Skip to content

Toggle service links

You are here

  1. Home
  2. Support and carers
  3. Technology and telecare

Technology and telecare

The following resources examine the use of telecare, technology, telematics, robotics, electronic tracking etc. and applications for carers and those they support.

Click on the title of any resource to find out more about the source of the information such as the type of reference, ISBN/ISSN, publication year, keywords. A number of these fields can be used to find further resources i.e. with the same keywords, or by the same author using the links on the right-hand side and within the Key Information box.

You can also click on an author's name in the list below to find further resources by that author, and use the DOI and other links to access the original source material (note: some source materials require subscription or permission to access).
 

Family caregiver support—a facilitator to empower family caregivers

Background: Mental disorders are highly prevalent, placing an enormous burden on individuals, society and economy. Research shows that family members who provide care to individuals with chronic or disabling mental conditions are themselves at risk. As a response to this problem, the project 'Family Caregiver Support - Strategies and tools to promote the mental and emotional health of caregivers' emerged, funded by Erasmus + Program and carried out by 8 European partners including ESS|P.PORTO. Objectives: To empower family members as caregivers and to give them access to relevant medical information and to psychological support for their own needs. Methods: A Guide and a Resource Pack concerning 9 important mental health disorders were developed. An interactive e-platform and a mobile App were developed to make available these materials. Validation of the products was carried out, in each country, by caregivers and health/social care professionals through online questionnaires. Data were collected and processed in an anonymous manner, and the confidentiality was ensured. Results: In Portugal, 98% of respondents (25 caregivers/citizens interested on subject, and 25 health/social care professionals), consider the accessibility and attractivity of the platform very good or excellent; and more than 90% consider materials very effective for the caregiver's empowerment. Some issues were identified to add to Resource Pack. Conclusions: Data from partners is being processed but there is already strong evidence of the usability and efficacy of the project's outcome, and a strong contribution was done for adult education concerning physical, mental and emotional health promotion of family caregivers. 

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Family Caregiver Needs and Preferences for Virtual Training to Manage Behavioral and Psychological Symptoms of Dementia: Interview Study

Background: Behavioral and psychological symptoms of dementia (BPSD) are associated with increased stress, burden, and depression among family caregivers of people with dementia. STAR-Caregivers Virtual Training and Follow-up (STAR-VTF) is adapted from an evidence-based, in-person program that trains family caregivers to manage BPSD. We used a human-centered design approach to obtain feedback from family caregivers about STAR-VTF. The program will be evaluated using a pragmatic randomized trial. Objective: The objective of the study was to understand the needs of family caregivers for improving BPSD management and the extent to which caregivers perceived that STAR-VTF could address those needs. Methods: Between July and September 2019, we conducted 15 semistructured interviews with family caregivers of people with dementia who receive care at Kaiser Permanente Washington in the Seattle metropolitan area. We identified participants from electronic health records, primarily based on a prescription for antipsychotic medication for the person with dementia (a proxy for caregivers dealing with BPSD). We showed caregivers low-fidelity prototypes of STAR-VTF online self-directed materials and verbally described potential design elements. We obtained caregiver feedback on these elements, focusing on their needs and preferences and perceived barriers to using STAR-VTF. We used a hybrid approach of inductive and deductive coding and aggregated codes to develop themes. Results: The idea of a virtual training program for learning to manage BPSD appealed to caregivers. They said health care providers did not provide adequate education in the early disease stages about the personality and behavior symptoms that can affect people with dementia. Caregivers found it unexpected and frustrating when the person with dementia began experiencing BPSD, symptoms they felt unprepared to manage. Accordingly, caregivers expressed a strong desire for the health care organization to offer programs such as STAR-VTF much sooner. Caregivers had already put considerable effort into problem solving challenging behaviors. They anticipated deriving less value from STAR-VTF at that point. Nonetheless, many were interested in the virtual aspect of the training due to the convenience of receiving help from home and the perception that help from a virtual program would be timelier than traditional service modalities (eg, face to face). Given caregivers’ limited time, they suggested dividing the STAR-VTF content into chunks to review as time permitted. Caregivers were interested in having a STAR-VTF provider for additional support in managing challenging behaviors. Caregivers reported a preference for having the same coach for the program duration. Conclusions: Caregivers we interviewed would likely accept a virtual training program such as STAR-VTF to obtain information about BPSD and receive help managing it. Family caregivers anticipated deriving more value if STAR-VTF was offered earlier in the disease course.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Family Caregiver Access of Online Medical Records: Findings from the Health Information National Trends Survey

Over 40 million Americans provide unpaid support to an adult relative for tasks including accompanying them to doctor visits and/or supporting them in medical decisions. Over the past several years—and particularly amid COVID-19—there has been increasing interest and demand for caregivers to be more involved in communication with providers to support patient engagement and patient-centered care as evidenced by recent state and federal policy initiatives to expand support to caregivers. One way to improve communication between caregivers and providers is through an online medical record (patient portal), which enables patients to acquire important health information and communicate with medical providers. However, caregivers’ access to adult care recipients’ portals is limited and varies across healthcare organizations and states. The objective of this study was to determine the relationship between socio-demographic attributes and responsibilities of caregivers and likelihood of (a) communicating with recipients’ providers and (b) accessing recipients’ online records.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Factors Associated With Intention to Adopt mHealth Apps Among Dementia Caregivers With a Chronic Condition: Cross-sectional, Correlational Study

Background: In the United States, nearly 80% of family caregivers of people with dementia have at least one chronic condition. Dementia caregivers experience high stress and burden that adversely affect their health and self-management. mHealth apps can improve health and self-management among dementia caregivers with a chronic condition. However, mHealth app adoption by dementia caregivers is low, and reasons for this are not well understood. Objective: The purpose of this study is to explore factors associated with dementia caregivers’ intention to adopt mHealth apps for chronic disease self-management. Methods: We conducted a cross-sectional, correlational study and recruited a convenience sample of dementia caregivers. We created a survey using validated instruments and collected data through computer-assisted telephone interviews and web-based surveys. Before the COVID-19 pandemic, we recruited dementia caregivers through community-based strategies, such as attending community events. After nationwide closures due to the pandemic, the team focused on web-based recruitment. Multiple logistic regression analyses were used to test the relationships between the independent and dependent variables. Results: Our sample of 117 caregivers had an average age of 53 (SD 17.4) years, 16 (SD 3.3) years of education, and 4 (SD 2.5) chronic conditions. The caregivers were predominantly women (92/117, 78.6%) and minorities (63/117, 53.8%), experienced some to extreme income difficulties (64/117, 54.7%), and were the child or child-in-law (53/117, 45.3%) of the person with dementia. In logistic regression models adjusting for the control variables, caregiver burden (odds ratio [OR] 1.3, 95% CI 0.57-2.8; P=.57), time spent caregiving per week (OR 1.7, 95% CI 0.77-3.9; P=.18), and burden of chronic disease and treatment (OR 2.3, 95% CI 0.91-5.7; P=.08) were not significantly associated with the intention to adopt mHealth apps. In the final multiple logistic regression model, only perceived usefulness (OR 23, 95% CI 5.6-97; P<.001) and the interaction term for caregivers’ education and burden of chronic disease and treatment (OR 31, 95% CI 2.2-430; P=.01) were significantly associated with their intention to adopt mHealth apps. Perceived ease of use (OR 2.4, 95% CI 0.67-8.7; P=.18) and social influence (OR 1.8, 95% CI 0.58-5.7; P=.31) were not significantly associated with the intention to adopt mHealth apps. Conclusions: When designing mHealth app interventions for dementia caregivers with a chronic condition, it is important to consider caregivers’ perceptions about how well mHealth apps can help their self-management and which app features would be most useful for self-management. Caregiving factors may not be relevant to caregivers’ intention to adopt mHealth apps. This is promising because mHealth strategies may overcome barriers to caregivers’ self-management. Future research should investigate reasons why caregivers with a low education level and low burden of chronic disease and treatment have significantly lower intention to adopt mHealth apps for self-management.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Factors associated with caring behaviors of family caregivers for patients receiving home mechanical ventilation with tracheostomy: A cross-sectional study

Background: The number of patients on home mechanical ventilation (HMV) worldwide has been steadily rising as medical technological advanced. To ensure the safety and quality care of the patients receiving HMV with tracheostomy, caring behavior of family caregivers is critical. However, studies on caring behavior of family caregivers and its associated factors were remained unexplored. This study aimed to describe the caring behaviors of family caregivers for patients receiving home mechanical ventilation with tracheostomy and to identify factors associated with their caring behaviors. Methods: This was a cross-sectional study for 95 family caregivers for patients with invasive home mechanical ventilation in South Korea. Caring behaviors were assessed by the Caring Behavior Scale with 74 items with 5-point Likert scale. Data were analyzed using multiple regression analysis. Results: Caring behaviors score of caregivers was 304.68±31.05 out of 370. They were significantly associated with knowledge on emergency care (β = 0.22, p = .011), number of required instruments for care (β = 0.21, p = .010), frequency of home visit care (β = 0.19, p = .017), experience of emergency situation for the last six months (β = 0.19, p = .009) and activities of daily living of patient (β = 0.27, p = .002). Conclusion: Development of standardized multidisciplinary discharge education for improving the caring capacity of caregivers is required for successful and healthy application of home mechanical ventilation.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

An exploration of the experiences of informal carers supporting a relative living with dementia during and after the move to technology-enriched supported accommodation

Objectives: The aim of this study was to explore the experiences of family carers supporting a relative living with dementia during and after the move to technology-enriched supported accommodation (TESA). The paper explores the informal carers (ICs) roles, the factors prompting the move to TESA, alongside their perceptions of their relatives' experience of the move and of life in a technology-enriched environment. Methods: Within a qualitative study 25 semi-structured interviews were conducted with ICs and data were analysed following a thematic approach. Results: Four themes were identified, reflecting the shift in roles and identity of both ICs and persons living with dementia. The move to TESA was linked to a perceived reduction in care-giving pressures, with positive outcomes reported for both the ICs and the people living with dementia. Smart home technologies in the facilities did not appear to impact on the decision-making during transition, however, they were valued as part of the lived experience for the people living with dementia within the TESA facilities. Conclusions: These findings are relevant to policy makers, commissioners and providers of services to highlight the engagement of all stakeholders in the provision of care for people living with dementia and their families early from diagnosis in order to facilitate person-centred practices in community settings.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

The Experiences of Family Members of Ventilated COVID-19 Patients in the Intensive Care Unit: A Qualitative Study

Background: Visitor restrictions caused challenges for family members when their loved ones had coronavirus disease (COVID-19) and were ventilated. Limited studies have reported on family members' experiences and support needs. Aim: To explore the experiences and support needs of family members of ventilated COVID-19 patients in the intensive care unit (ICU). Design: Exploratory, qualitative design, using in-depth individual telephone interviews, and analyzed using thematic analysis. Setting/Participants: Ten family members of adult COVID-19 patients in the ICU. Result: Seven key themes represented family members' experiences: (a) reactions to the COVID-19 diagnosis, (b) COVID-19 as a destabilizing force on the family unit, (c) COVID-19's effects on bereavement outcomes, (d) desperately seeking information, (e) family member needs, (f) conflicting feelings about video calls, and (g) appreciation of care. Family members' feelings about the patient's diagnosis and how the virus was contracted exacerbated their stress and anxiety. They struggled to feel informed about care that they could not witness and had difficulty understanding information. Family members reported that video calls were unhelpful. While these experiences made them question the quality of care, they expressed their appreciation of the frontline healthcare providers taking care of their loved ones. Conclusion: The stress and uncertainty of family members of critically ill patients with COVID-19 were influenced by their inability to feel connected to the patient and informed about care. Healthcare providers should assess each individual family's burden and preferences, and this should include establishing structured, timely, and consistent communication regarding patient care during the pandemic including early referral to palliative care.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

The everyday life situation of caregivers to family members who have had a stroke and received the rehabilitation intervention F@ce in Uganda

Background: Stroke is increasing in Africa and consequences such as limitations in the performance of activities in everyday life persist a long time. A family member might need to care for and assist the person who has had a stroke. The life situation of these caregivers thereby changes, which could lead to increased workload and new responsibilities in caring for which they lack but request knowledge. During the F@ce rehabilitation program, the caregivers received counseling, which is uncommon in the African context. The aim of the study was twofold; (1) to investigate the perceived caregiver burden and life satisfaction and, (2) to explore and describe the life situation for caregivers to persons that have had a stroke and received the mobile phone supported rehabilitation F@ce in urban areas in Uganda. Method: A mixed method design was used. Twelve caregivers took part in a semi-structured interview regarding their everyday life situation and responded to questionnaires on caregiver burden and life satisfaction. Latent qualitative content analysis was used to analyse the interviews. Results: Five categories were identified in the caregivers’ experiences of their life situation: Feels obligated but is just a natural commitment; a tightly scheduled everyday life; being the supporting relative; the caregivers´ approach as rehabilitators; and being supported by the rehabilitation intervention. The caregivers rated relatively high on the Caregiver Burden Scale and two thirds of the sample rated their satisfaction with life as a whole as dissatisfying. Further ratings on the Life Satisfaction checklist revealed that the financial, vocational, leisure and family situations were dissatisfying. Conclusions: Even if it was viewed as a natural commitment to be a caregiver when a family member had had a stroke, the life situation changed substantially for those who took on the caregiving role. Caregiving responsibilities were challenging as well as a heavy workload and a strained financial situation as many were giving up on jobs. The participants felt burdened and rated a low life satisfaction. The F@ce intervention was, however, expressed as valued and involved support and advice in their caregiving situation as well as information on stroke which relieved stress among them.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Evaluating the provision of Further Enabling Care at Home (FECH+) for informal caregivers of older adults discharged home from hospital: protocol for a multicentre randomised controlled trial

Introduction: There are personal and societal benefits from caregiving; however, caregiving can jeopardise caregivers’ health. The Further Enabling Care at Home (FECH+) programme provides structured nurse support, through telephone outreach, to informal caregivers of older adults following discharge from acute hospital care to home. The trial aims to evaluate the efficacy of the FECH+ programme on caregivers’ health-related quality of life (HRQOL) after care recipients’ hospital discharge. Methods and analysis: A multisite, parallel-group, randomised controlled trial with blinded baseline and outcome assessment and intention-to-treat analysis, adhering to Consolidated Standards of Reporting Trials guidelines will be conducted. Participants: (N=925 dyads) comprising informal home caregiver (18 years or older) and care recipient (70 years or older) will be recruited when the care recipient is discharged from hospital. Caregivers of patients discharged from wards in three hospitals in Australia (one in Western Australia and two in Queensland) are eligible for inclusion. Participants will be randomly assigned to one of the two groups. The intervention group receive the FECH+ programme, which provides structured support and problem-solving for the caregiver after the care recipient’s discharge, in addition to usual care. The control group receives usual care. The programme is delivered by a registered nurse and comprises six 30–45 min telephone support sessions over 6 months. The primary outcome is caregivers’ HRQOL measured using the Assessment of Quality of Life—eight dimensions. Secondary outcomes include caregiver preparedness, strain and distress and use of healthcare services. Changes in HRQOL between groups will be compared using a mixed regression model that accounts for the correlation between repeated measurements. Ethics and dissemination: Participants will provide written informed consent. Ethics approvals have been obtained from Sir Charles Gairdner and Osborne Park Health Care Group, Curtin University, Griffith University, Gold Coast Health Service and government health data linkage services. Findings will be disseminated through presentations, peer-reviewed journals and conferences.Trial registration number ACTRN12620000060943.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Evaluating service user & carer experience of videoconferencing software during COVID-19 pandemic

Aims: To evaluate service user and carer experience of use of videoconferencing software (Microsoft Teams) during MDT meetings. To identify specific areas for improvement. To make changes based on these recommendations. Method: 2 surveys were distributed to inpatients and their carers on a functional Older Adults inpatient ward (n = 21), including quantitative and qualitiative questions. The results from these were compiled, and on review, mutliple recommendations for improvement were made. Result: 90% of service users find it helpful to have family present over video conferencing software during their MDT meetings, and 91% of carers feel involved and able to contribute when they do join in this way. 81% of carers have the technology available at home to use such software, but only 55% of them feel confident using it. 73% need more information on its use. 60% of carers referenced poor staff skills with software as a barrier to its use, and 60% referenced poor organisation of meetings. 2 service users raised issue with the size of a small laptop screen not allowing them to see who was actually present over MS Teams, although none were concerned with issues around confidentiality and the use of such softwareSeveral service users, carers and members of community teams identified poor sound quality as an issue, both when joining over the software, and when present in the room. Conclusion: Widespread use of videoconferencing software such as MS Teams is likely to continue beyond the end of the COVID-19 pandemic. Through discussion with the ward team, the IT department, the training department, and the local council, multiple changes were made to the service, as below. These form a recommended list of areas for improvement in other services. Availability of videoconferencing equipment (in addition to laptop), dedicated videoconferencing microphone/speaker to improve sound quality, display screen, webcam, organisation of meetings, designating a chairperson to admit and introduce all participants, designating a meeting organiser to invite all necessary participants, staff skills, local audit of staff familiarity with software, introduction of mandatory training for staff on use of software, carer skills & access to equipment, information and support available from well-trained staf, liaison with other organisations including council and third sector about availablity of equipment loans and training for carers

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Engaging carers in co-design: Development of the carer readiness tool

Introduction: The Carer Support Unit (CSU) of the Central Coast Local Health District (CCLHD), NSW, Australia, developed, trialled and implemented a Carer Readiness Tool (CRT) to help carers gauge their readiness to care at home, highlight to hospital staff areas for additional support for carers, and provide evidence of carer engagement in discharge planning. Methods: A rigorous co-design process was followed with carer consultation at key milestones in development of the CRT. The tool was piloted in two cancer/chronic renal disease inpatient units commencing November 2019. Results: The CRT was well-received by carers who appreciated the opportunity to complete the tool in their own time, not in front of the patient. Positive feedback was received from clinicians, including the breadth of the CRT’s content which contributed to better discharge planning. The need to manually incorporate a hard copy form into the electronic medical record is a limitation of the CRT. Conclusion: The CRT is context-specific and fit for purpose. During the development of the CRT, the project team focused on the face validity and usefulness of the tool. The next stage of the project will be formal evaluation of the tool to measure its impact. 

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Electronic Health Record Portal Use by Family Caregivers of Patients Undergoing Hematopoietic Cell Transplantation: United States National Survey Study

Background: As family caregivers of patients undergoing hematopoietic cell transplantation have multifaceted caregiving responsibilities (such as medical, household, financial) of long duration, they also have multiple physical, social, psychological, and informational needs. Objective: This study explored the prevalence of electronic health record patient portal use by family caregivers for managing both their own and their hematopoietic cell transplantation care recipient’s health, as well as potential factors associated with portal use. Methods: An electronic caregiver health survey, first developed via cognitive interviewing methods of hematopoietic cell transplantation caregivers, was distributed nationally (in the United States) by patient advocacy organizations to family caregivers of hematopoietic cell transplantation patients. It was used to assess self-reported caregiver demographics, caregiving characteristics, depression and anxiety with the Patient Health Questionnaire–4, coping with the Brief COPE, and caregiver portal use to manage care recipient’s and their own health. Results: We found that 77% of respondents (720/937) accessed electronic health record patient portals for their care recipients, themselves, or both. Multivariate models indicated use of care recipient electronic health record portals by caregivers was more likely with young, White, married, low-income caregivers caring for a parent, residing with the care recipient, and experiencing more caregiver depression. Caregiver use of their own electronic health record portal was more likely with young, White, high-income caregivers caring for a parent and experiencing chronic medical conditions of their own. Partially due to multicollinearity, anxiety and coping did not contribute independently to this model. Conclusions: Findings from the survey could open avenues for future research into caregiver use of technology for informational support or intervention, including wearables and mobile health. International Registered Report Identifier (IRRID): RR2-10.2196/4918

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Effectiveness of a telephone intervention based on motivational health coaching for improving the mental health of caregivers of people with dementia: A randomised controlled trial

Objectives: Caring for a family member with dementia is considered one of the activities with the greatest negative impact on a person's mental health. Developing long‐lasting and effective strategies is a challenge for caregivers. This study sought to evaluate the impact of an intervention based on a programme of motivational coaching delivered by telephone in a group of caregivers of patients with dementia compared to a control group. Methods: A randomised controlled trial with a control group and an intervention group. (CONSORT guidelines were used). Telephone calls were made during six weeks, involving a process of coaching and motivational interviews. The following variables were measured in caregivers: self‐efficacy of caring, depression, perceived stress, frequency of problematic behaviours and dysfunctional thoughts. Assessments were conducted at three time points: baseline, post‐intervention and three months’ post‐intervention. Results: In total, 106 caregivers participated (53 subjects in the control group and 53 in the intervention group). Statistically significant differences (ANCOVA) were found between both groups for the self‐efficacy and stress variables, with improved results in the intervention group (p < .01). Furthermore, statistically significant differences were found in the intervention group between the baseline and post‐intervention assessments, with improvements in self‐efficacy, decreased stress and decreased dysfunctional thoughts (p < .05). The results were maintained over time for both groups. Conclusions: An intervention based on telephone calls using a health coaching approach with motivational interviewing appears to be effective for the improvement of self‐efficacy and mental health of caregivers of people with moderate dementia. Furthermore, these effects appear to be maintained over time.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Effectiveness of a digitally supported care management programme to reduce unmet needs of family caregivers of people with dementia: study protocol for a cluster randomised controlled trial (GAIN)

Background: Up to two-thirds of dementia care is provided by family caregivers who often experience high burden, little support and adverse health outcomes. Enabling and supporting family caregivers to provide care at home prevents early institutionalisation of the person with dementia and alleviates the economic burden of dementia in the long term. General practitioners (GPs), as the first point of contact, have a key role in identifying and managing burden and care needs of family caregivers. However, in routine care, this opportunity is often limited by time constraints and even if caregiver needs are recognised, detailed information about regionally available support and advice on healthcare services is often lacking.

Methods: This is a cluster randomised, controlled trial investigating the clinical use and cost-effectiveness of a digitally supported care management programme for caregivers of people with dementia (PwD). Five hundred family caregivers will be randomised at GP offices, specialist practices and memory clinics, with about n=250 participants per arm. Participants are eligible if they are the primary family caregiver of a PwD, are at least 18 years of age and provide informed consent. Participants in the intervention group will receive an individualised care management plan, which will be carried out by qualified study nurses in collaboration with the treating GP. All participants will receive a baseline assessment and a 6-months follow-up assessment. Participants in the wait-list control group will receive usual care. Starting at the 6 months’ follow-up, the former controls will also receive an individualised management plan. Primary outcomes are the number of unmet needs (incl. the Camberwell Assessment of Need for the Elderly, CANE) and health-related quality of life (EQ-5D-5L) at 6 months. Secondary outcomes include caregiver burden (Zarit Burden Interview, ZBI), social support (Lubben Social Network Scale, LSNS), the use of medical and non-medical services (Questionnaire for the Use of Medical and Non-Medical Services, FIMA) and resource utilisation (Resource Utilisation in Dementia, RUD). The primary analysis will be based on intention-to-treat. Between- and within-group analyses and a cost-effectiveness analysis will be conducted to estimate the effect of the tablet PC-based care management programme. This trial is funded by the German Federal Joint Committee (G-BA) Innovation Fund. Discussion: The findings of this trial will be useful in informing and improving current healthcare system structures and processes to support family dementia caregivers within routine care practices.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

The effect of the virtual social network-based psycho-education on the hope of family caregivers of clients with severe mental disorders

Background: Psycho-education may have a positive effect on family caregivers of clients with mental disorders, and promote positive psychological states such as hope. The present study aims to investigate the effect of virtual social network-based psycho-education on the hope of family caregivers of clients with severe mental disorders. Method: This study is a quasi-experimental research with a control and experimental groups. The participants of the study were 72 family caregivers of clients with severe mental disorders (36 in each group). Data were collected using demographic questionnaire and Adult Hope Scale before the study, immediately after the end of the training (first post-test), and 4 weeks afterwards (second post-test). The experimental group received psycho-education through Telegram App for four weeks. Results: The results of the demographic questionnaire showed that both groups were homogeneous. The results of the Adult Hope Scale indicated that the mean score of both control and experimental groups were statistically significant and increased in the experimental group (P < 0.001). In addition, the changes of hope score in the experimental group were statistically significant in the first post-test than the pre-test, and in the second post-test than the first post-test and pre-test (P < 0.001). Conclusions: The findings of this study suggested that virtual social network-based psycho-education promotes the hopes of the family caregivers of clients with severe mental disorders. Due to the low cost and fast access of people to virtual networks, the content of this educational program can be widely used for family caregivers. 

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Does the advice requested by carers of people who live with dementia reflect the level of commissioned post-diagnostic support? A retrospective evaluation of calls to the Me2U dementia day centre 24-hour advice line

Aims: The aim was to examine the reasons for advice requests by carers of people who live with dementia (PLWD) that attend the Me2u dementia day centre in order to identify key explanatory themes. We hypothesised that requests were related mainly to coordinating care and clinical issues due to limited post-diagnostic support (PDS) in our area. Background: The Me2u dementia day centre (Merseyside) cares for PLWD and also supports carers. As part of the service, a 24-hour advice line is included for PLWD and their carers who attend the centre. Locally, there is limited PDS and most carers navigate the health and social care system alone mirroring the findings by the National Collaborating Centre for Mental Health (NCCMH). Method: We undertook a retrospective evaluation of 244 advice calls, from 64 carers, between 01/06/2019 and 31/12/2019. We analysed time of call, type of advice, type of dementia, age and whether the advice was for the PLWD or for the carer. Results: Of the 244 calls, the most common time to call was between 09.00 - 14.00 (n = 168; (68.8%) peak 09.00 - 10.00 (n = 38). Average age of the person about whom the advice was sought was 79.08 years. 91.4% of the advice calls related to PLWD (most common dementia Alzheimer's) and 8.6% to the carer only. The mean number of calls per person was 3.8 (range 1–24).Advice data were grouped into 9 broad themes namely, related to symptoms/behaviour (32.79%, n = 80), request for Me2u to coordinate care (20.08%, n = 49), general advice (14.75%, n = 36), personal care (9.42%, n = 23), carer only advice (8.60%, n = 21), social issues (6.14%, n = 15), social care (4.50%, n = 11), safeguarding (2.46%, n = 6), non-health and social care issue (1.23%, n = 3).ConclusionReasons for limited/poor PDS given by the NCCMH are; absence of named coordinators of care, over-reliance on families and carers to manage and facilitate appointments, poor recognition and management of comorbidities. This data show that 52.87% of calls were for clinical advice and coordination of care reflecting NCCMH findings. The interventions post-call reduced the impact on providers of urgent care. Conclusions: These findings provide support for the provision of a [24-hour] advice line as a routine part of post-diagnostic support services, especially in areas that have limited or poor PDS. Commissioners of PDS services in areas that have limited or poor PDS should make this a priority to prevent unplanned admissions to hospital and carer breakdown.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

A Digital Mobile Community App for Caregivers in Singapore: Predevelopment and Usability Study

Background: With increasing life expectancy and aging populations, the global prevalence of chronic diseases and the long-term care required for people with comorbidities is rising. This has led to an ever-growing need for caregiving. Previous literature has shown that caregivers face problems of isolation and loneliness. However, many health organizations mainly focus their efforts on in-person community groups that require participants to meet physically. This is not always convenient or accessible for caregivers who are often juggling caring for their care recipient with family and work responsibilities. Objective: With medical advancements such as the proliferation of mobile phones and internet technology, caregivers may have opportunities for easier access to resources and support. Technological innovations could help empower the caregiving community to seek assistance for improving their quality of life at their convenience. A community network app called Caregivers’ Circle was conceptualized in response to the needs of the caregivers on a day-to-day caregiving journey. This paper traces the predevelopment inquiry and technical details of this app to provide a clear understanding of its implementation along with a usability study to gauge user opinion of the app within Singapore. Methods: A predevelopment survey was conducted to identify specific needs of caregivers and gaps in the currently available web-based community networks. The survey consisted of questions on demographical data, health-related issues of the care recipient, mental and physical health–related issues of the caregiver, digital media use, information seeking, and support. This pre–app development survey was completed by 103 caregivers. Qualitative enquiries were also conducted with caregivers within Singapore to identify issues related to caregiving, support provided, and what caregivers would want from a caregiving mobile app. Results: From the feedback garnered from the caregivers, the developers were able to identify several caregivers’ needs and gaps within the current support networks. This feedback was integrated into the mobile app called Caregivers’ Circle upon development. The features of this app include a public forum for community discussions, a marketplace to buy and sell items, care groups to hold private discussions with friends or other users of the app, and a friends feature to search and add new caregiving friends. Conclusions: In general, the caregivers liked the Caregivers’ Circle app and were confident that this app could help them have a better quality of life. The Caregivers’ Circle app is unique in its integrated approach. The integration of many features that caregivers need on a daily basis into an easy app can save their time as well as help them navigate their life smoothly.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Determinants of acceptance of patients with heart failure and their informal caregivers regarding an interactive decision-making system: a qualitative study

Objective: Heart failure is a growing challenge to healthcare systems worldwide. Technological solutions have the potential to improve the health of patients and help to reduce costs. Acceptability is a prerequisite for the use and a successful implementation of new disruptive technologies. This qualitative study aimed to explore determinants that influence the acceptance of patients and their informal caregivers regarding a patient-oriented digital decision-making solution—a doctor-at-home system. Design: We applied a semistructured design using an interview guide that was based on a theoretical framework influenced by established acceptance theories. The interviews were analysed using a content analysis. Setting: A multicentred study in four European countries.ParticipantsWe interviewed 49 patients and 33 of their informal caregivers. Most of the patients were male (76%) and aged between 60 and 69 years (43%). Informal caregivers were mostly female (85%). The majority of patients (55%) suffered from heart failure with mild symptoms. Results: Four main categories emerged from the data: needs and expectations, preferences regarding the care process, perceived risk and trust. Participants expressed clear wishes and expectations regarding a doctor-at-home, especially the need for reassurance and support in the management of heart failure. They were receptive to changes to the current healthcare processes. However, trust was identified as an important basis for acceptance and use. Finally, perceived risk for decision-making errors is a crucial topic in need of attention. Conclusion: Patients and informal caregivers see clear benefits of digitalisation in healthcare. They perceive that an interactive decision-making system for patients could empower and enable effective self-care. Our results provide important insights for development processes of patient-centred decision-making systems by identifying facilitators and barriers for acceptance. Further research is needed, especially regarding the influence and mitigation of patients and informal caregivers’ perceived risks.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Design and Evaluation of a Novel Mobile Phone Application to Improve Palliative Home-Care in Resource-Limited Settings

Context: Mobile health (mHealth) provides an opportunity to use internet coverage in low- and middle-income countries to improve palliative care access and quality. Objectives: This study aimed to design a mobile phone application (app) to enable or improve communication between family caregivers, community caregivers, and palliative care teams; to evaluate its acceptability, processes, and mechanisms of action; and to propose refinements. Methods: A codesign process entailed collaboration between a Project Advisory Group and collaborators in India, Uganda, and Zimbabwe. We then trained community and family caregivers to use an app to communicate patient-reported outcomes to their palliative care providers each week on a data dashboard. App activity was monitored, and qualitative in-depth interviews explored experience with the app and its mechanisms and impact. Results N = 149 caregivers participated and uploaded n = 837 assessments of patient-reported outcomes. These data were displayed to the palliative care team on an outcomes dashboard on n = 355 occasions. Results: Qualitative data identified: 1) high acceptability and data usage; 2) improved understanding by team members of patient symptoms and concerns; 3) a need for better feedback to caregivers, for better prioritisation of patients according to need, for enhanced training and support to use the app, and for user-led recommendations for ongoing improvement. Conclusion: An outcomes-focused app and data dashboard are acceptable to caregivers and health-care professionals. They are beneficial in identifying, monitoring, and communicating patient outcomes and in allocating staff resource to those most in need.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Dementia Caregivers' Experiences and Reactions to Remote Activity Monitoring System Alerts

Background: Technology-based tools, including remote activity monitoring (RAM) systems, have been proposed as valuable aids for family caregivers of people with dementia. Previous analyses have shown limited effects of these systems and highlighted a number of barriers, including false alarms. Methods: We used data from an ongoing embedded mixed method randomized controlled intervention to describe patterns of alerts and their association with receipt of the RAM system and caregiver outcomes. Quantitative analyses showed a modest positive association between the number of alerts during the first month and system review score. In addition, qualitative results illustrated the importance of alert context, including utility, accuracy, and type of alert delivery. Conclusions: These findings highlight the relevance of early alerts to engagement with and perceived benefit from the RAM system. 

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Decision Making When Cancer Becomes Chronic: Needs Assessment for a Web-Based Medullary Thyroid Carcinoma Patient Decision Aid

Background: In cancers with a chronic phase, patients and family caregivers face difficult decisions such as whether to start a novel therapy, whether to enroll in a clinical trial, and when to stop treatment. These decisions are complex, require an understanding of uncertainty, and necessitate the consideration of patients’ informed preferences. For some cancers, such as medullary thyroid carcinoma, these decisions may also involve significant out-of-pocket costs and effects on family members. Providers have expressed a need for web-based interventions that can be delivered between consultations to provide education and prepare patients and families to discuss these decisions. To ensure that these tools are effective, usable, and understandable, studies are needed to identify patients’, families’, and providers’ decision-making needs and optimal design strategies for a web-based patient decision aid. Objective: Following the international guidelines for the development of a web-based patient decision aid, the objectives of this study are to engage potential users to guide development; review the existing literature and available tools; assess users’ decision-making experiences, needs, and design recommendations; and identify shared decision-making approaches to address each need. Methods: This study used the decisional needs assessment approach, which included creating a stakeholder advisory panel, mapping decision pathways, conducting an environmental scan of existing materials, and administering a decisional needs assessment questionnaire. Thematic analyses identified current decision-making pathways, unmet decision-making needs, and decision support strategies for meeting each need. Results: The stakeholders reported wide heterogeneity in decision timing and pathways. Relevant existing materials included 2 systematic reviews, 9 additional papers, and multiple educational websites, but none of these met the criteria for a patient decision aid. Patients and family members (n=54) emphasized the need for plain language (46/54, 85%), shared decision making (45/54, 83%), and help with family discussions (39/54, 72%). Additional needs included information about uncertainty, lived experience, and costs. Providers (n=10) reported needing interventions that address misinformation (9/10, 90%), foster realistic expectations (9/10, 90%), and address mistrust in clinical trials (5/10, 50%). Additional needs included provider tools that support shared decision making. Both groups recommended designing a web-based patient decision aid that can be tailored to (64/64, 100%) and delivered on a hospital website (53/64, 83%), focuses on quality of life (45/64, 70%), and provides step-by-step guidance (43/64, 67%). The study team identified best practices to meet each need, which are presented in the proposed decision support design guide. Conclusions: Patients, families, and providers report multifaceted decision support needs during the chronic phase of cancer. Web-based patient decision aids that provide tailored support over time and explicitly address uncertainty, quality of life, realistic expectations, and effects on families are needed.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Cost‐effectiveness of a telehealth intervention for in‐home dementia care support: Findings from the FamTechCare clinical trial

Background: Determining the cost‐effectiveness of technological interventions is a crucial aspect in assuring these interventions can be adopted. The FamTechCare intervention is an innovative telehealth support that links family caregivers of persons living with dementia to tailored feedback from dementia care experts based on caregiver‐initiated video recordings of challenging care situations. The FamTechCare intervention has demonstrated significant reductions in caregiver depression and increases in caregiver competence when compared to standard telephone support. The purpose of this article is to report on the cost‐effectiveness of the FamTechCare telehealth intervention. Methods: Process‐based costing and a cost‐effectiveness analysis using the incremental cost‐effectiveness ratio (ICER) was completed with 68 caregiver and person living dementia with dyads. Results: The cost of the 12‐week FamTechCare telehealth intervention was found to be greater ($48.43 per dyad per week) due to the telehealth equipment, recording application, and expert panel time compared with the telephone support intervention ($6.96 per dyad per week). The ICER was $18.51 for caregiver depression and $36.31 for caregiver competence indicating that it cost no more than $36.38 per dyad per week over 12 weeks to achieve significant improvement in depression and competence in the FamTechCare caregivers compared to the telephone support caregivers. Conclusion: The FamTechCare intervention appears to be cost‐effective when compared to the telephone support intervention and remains near the willingness‐to‐pay threshold for caregivers providing in‐home dementia care support.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Construction and validation of self-care educational technology for caregivers

OBJECTIVES: to build and validate educational self-care technology for informal caregivers. METHODS: methodological study, anchored in the Delphi technique, carried out in a municipality in the state of Paraná, Brazil, between September 2018 and November 2019. It was developed in three stages: situational diagnosis; elaboration of educational technology; content and appearance validation by expert judges and informal caregivers, using the content validity index and coefficient of variation. RESULTS: after the steps of the methodological process, an educational technology called "Taking Care of Those Who Care" was produced, as an information tool that deals with the self-care of informal caregivers, receiving a content validity index above 0.86 and a variation coefficient. below 20% on all items. CONCLUSIONS: the educational technology was built and evaluated with satisfactory rates by the specialists and target audience, showing a high correlation of agreement, characterizing it as adequate and informative to informal caregivers.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

A Conceptual Model to Improve Care for Individuals with Alzheimer's Disease and Related Dementias and Their Caregivers: Qualitative Findings in an Online Caregiver Forum

Background: As the population rapidly ages, a growing number of families are engaging in care for individuals living with Alzheimer's disease and related dementias (ADRD). The perceived challenges and burdens that face informal caregivers are enormous. Objective: The objective of this study was to 1) explore from the family caregivers' perspective, the daily lives of individuals living with ADRD, and the challenges family caregivers encounter when caring for a family member with ADRD; and 2) to develop a comprehensive model with the endeavor to improve care for individuals with ADRD and their family caregivers. Methods: Posts were extracted from the ALZConnected online caregiving forum in May 2019. Guided by a triangular model focused on Caregiver, Individual with ADRD, and Context of Care, two researchers independently analyzed 654 posts with a combination of deductive and inductive thematic analysis approach. Researchers all agreed on finalized codes and themes. Results: Thematic analysis resulted in four themes: Individual with ADRD, Caregiver, Dynamic between Caregiver and Individual with ADRD, and Context of Care. The most frequently discussed topics among caregivers were informational and emotional support for caregivers, and the capabilities and functioning of individuals with ADRD. Conclusion: Online forums provide a valuable platform for caregivers to support each other informationally and emotionally, share care strategies, and navigate caregiving burdens. An expanded model was derived to support a comprehensive and dynamic approach to improve care for both caregivers and individuals with ADRD. The unique nature of the caregiver forum data is worthy of further data mining using a novel analysis approach. 

Access source material through DOI
Original source (some source materials require subscription or permission to access)

A concept analysis of health communication in a home environment: Perspectives of older persons and their informal caregivers

Background: Health communication (HC) is a vast research field focusing on changing health behaviours, and rapidly evolving technology is creating different ways and possibilities to reach target groups and audiences. In the context of home care, a deeper understanding of HC is lacking, specifically for older persons with care needs and their informal caregivers. The aim of this concept analysis is to identify and construct the meaning of HC from the perspective of older persons in need of care in the home environment and their informal caregivers. Materials and methods: This study utilised Rogers’ (2000) Evolutionary Concept Analysis Method (EMCA) to create and construct a meaning of the concept of HC. The EMCA was based on a systematic literature review of scientific articles, using CINAHL, Pubmed and Inspec (2000‐2017). A total of 29 articles were retrieved and analysed. Results: The identified attributes of the concept were as follows: resources of the recipient, influence on decisions and advantages of tailored information. HC was described as both contributing to knowledge as well as being overwhelming where habits and resources influenced the use of information. The attributes led to the following descriptive definition of HC: ‘Tailored HC, based on needs and resources of the recipient influence care decisions’. The home environment influenced HC by habits and interactions between older persons and their informal caregivers. Conclusions: The home environment influenced HC in terms of social aspects of interactions and habits and between the older person and the informal caregiver. Tailored information with the use of technology contributed to knowledge in care of older persons and their informal caregivers. HC was shown to contribute to improve care for older people in their home environment.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Comparison of Traditional Videos With Telenovelas for Hospice Family Caregivers Education

Background: While research has shown that hospice family caregivers (HFCG) seek additional information related to patient care, pain and symptom management, and self-care, it is unknown how the use of telenovela videos for education in hospice would be received by HFCG. Objective: To explore HFCG perceived benefits and challenges with the use of telenovelas as compared to traditional educational videos during online support group. Methods: A mixed methods study with a concurrent triangulated design that analyzed qualitative interviews and YouTube analytics report to identify how viewers responded (number of views and their feedback) to telenovela videos as compared to traditional educational videos. Results: Among 39 (n = 39) HFCGs, most participants were female (80%) of White/Caucasian race, with more than high school education (85%) and they were adult children of hospice cancer patient (49%). Comparing HFCG that viewed traditional videos with HFCG that viewed telenovela videos, the telenovela video was watched more (12% longer viewing duration) and caregivers reported better content recall with informative benefits, more follow up actions and reflection about their own hospice experience. Conclusion: Caregiver feedback indicated that watching the telenovela was engaging, acceptable and produced more conversations about patient care, than watching a non-telenovela format video. Further research is needed to test telenovela efficacy in enhancing HFCG outcomes.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Co-designing a dashboard of predictive analytics and decision support to drive care quality and client outcomes in aged care: a mixed-method study protocol

Introduction: There is a clear need for improved care quality and quality monitoring in aged care. Aged care providers collect an abundance of data, yet rarely are these data integrated and transformed in real-time into actionable information to support evidence-based care, nor are they shared with older people and informal caregivers. This protocol describes the co-design and testing of a dashboard in residential aged care facilities (nursing or care homes) and community-based aged care settings (formal care provided at home or in the community). The dashboard will comprise integrated data to provide an ‘at-a-glance’ overview of aged care clients, indicators to identify clients at risk of fall-related hospitalisations and poor quality of life, and evidence-based decision support to minimise these risks. Longer term plans for dashboard implementation and evaluation are also outlined. Methods: This mixed-method study will involve (1) co-designing dashboard features with aged care staff, clients, informal caregivers and general practitioners (GPs), (2) integrating aged care data silos and developing risk models, and (3) testing dashboard prototypes with users. The dashboard features will be informed by direct observations of routine work, interviews, focus groups and co-design groups with users, and a community forum. Multivariable discrete time survival models will be used to develop risk indicators, using predictors from linked historical aged care and hospital data. Dashboard prototype testing will comprise interviews, focus groups and walk-through scenarios using a think-aloud approach with staff members, clients and informal caregivers, and a GP workshop. Ethics and dissemination: This study has received ethical approval from the New South Wales (NSW) Population & Health Services Research Ethics Committee and Macquarie University’s Human Research Ethics Committee. The research findings will be presented to the aged care provider who will share results with staff members, clients, residents and informal caregivers. Findings will be disseminated as peer-reviewed journal articles, policy briefs and conference presentations.

Original source (some source materials require subscription or permission to access)

Co-design and development of online video resources about immunotherapy with patients and their family

Background: Patients receiving novel treatments like immune checkpoint inhibitor therapy (ICI or immunotherapy) to treat their cancer require comprehensive information so they know what to expect and to encourage the identification and reporting of possible side-effects. Videos using patient stories can be reassuring and an effective method for conveying health information. Objective: The objective of this study was to use a co-design process to develop video resources about immunotherapy to identify a) the key informational and supportive care needs of patients and family carers and b) topics clinicians recommended be addressed during pre-treatment nurse-led education. Patient involvement: Experience Based Co-design (EBCD) provided the framework for video development, to facilitate patient and carer involvement in every stage of research design and implementation, and video design and development. Methods: Data were collected and used in four stages: 1) qualitative interviews, 2) co-design workshop, 3) filming plan and 4) feedback and editing. Results: Thirty-five individuals contributed to the development of a suite of five videos called “Immunotherapy: What to Expect”. Videos covered general treatment information, preparation for infusion, potential side-effects, balancing lifestyle with treatment and seeking support. Video run time ranges from 6 to 15 min. Discussion: The EBCD process ensured that videos were developed to meet patient and carer identified needs associated with commencing and managing ICI therapy. The structure of EBCD in facilitating patient and carer involvement throughout the research and video development process ensured transparency throughout the project, and continuity of message, scope and outcomes. Practical Value: EBCD is a useful framework for developing patient-centred health resources. The videos developed are now available for patients and carers via YouTube, and provide education and support tailored to this groups’ needs regarding ICI therapy for cancer.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

A cluster randomized controlled trial comparing Virtual Learning Collaborative and Technical Assistance strategies to implement an early palliative care program for patients with advanced cancer and their caregivers: a study protocol

Background: Virtual Learning Collaboratives (VLC), learning communities focused on a common purpose, are used frequently in healthcare settings to implement best practices. Yet, there is limited research testing the effectiveness of this approach compared to other implementation strategies. This study evaluates the effectiveness of a VLC compared to Technical Assistance (TA) among community oncology practices implementing ENABLE (Educate, Nurture, Advise, Before Life Ends), an evidence-based, early palliative care telehealth, psycho-educational intervention for patients with newly diagnosed advanced cancer and their caregivers. Methods: Using Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) and Proctor’s Implementation Outcomes Frameworks, this two-arm hybrid type-III cluster-randomized controlled trial (RCT) will compare two implementation strategies, VLC versus TA, among the 48 National Cancer Institute Community Oncology Research Program (NCORP) practice clusters that have not historically provided palliative care to all patients with advanced cancer. Three cohorts of practice clusters will be randomized to the study arms. Each practice cluster will recruit 15–27 patients and a family caregiver to participate in ENABLE. The primary study outcome is ENABLE uptake (patient level), i.e., the proportion of eligible patients who complete the ENABLE program (receive a palliative care assessment and complete the six ENABLE sessions over 12 weeks). The secondary outcome is overall program implementation (practice cluster level), as measured by the General Organizational Index at baseline, 6, and 12 months. Exploratory aims assess patient and caregiver mood and quality of life outcomes at baseline, 12, and 24 weeks. Practice cluster randomization will seek to keep the proportion of rural practices, practice sizes, and minority patients seen within each practice balanced across the two study arms. Discussion: This study will advance the field of implementation science by evaluating VLC effectiveness, a commonly used but understudied, implementation strategy. The study will advance the field of palliative care by building the capacity and infrastructure to implement an early palliative care program in community oncology practices. Trial registration Clinicaltrials.gov. NCT04062552; Pre-results. Registered: August 20, 2019. https://clinicaltrials.gov/ct2/show/NCT04062552?term=NCT04062552&draw=2&rank=1

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Chatbots to Support People With Dementia and Their Caregivers: Systematic Review of Functions and Quality

Background: Over the past decade, there has been an increase in the use of information technologies to educate and support people with dementia and their family caregivers. At the same time, chatbot technologies have become increasingly popular for use by the public and have been identified as having benefits for health care delivery. However, little is known about how chatbot technologies may benefit people with dementia and their caregivers. Objective: This study aims to identify the types of current commercially available chatbots that are designed for use by people with dementia and their caregivers and to assess their quality in terms of features and content. Methods: Chatbots were identified through a systematic search on Google Play Store, Apple App Store, Alexa Skills, and the internet. An evidence-based assessment tool was used to evaluate the features and content of the identified apps. The assessment was conducted through interrater agreement among 4 separate reviewers. Results: Of the 505 initial chatbots identified, 6 were included in the review. The chatbots assessed varied significantly in terms of content and scope. Although the chatbots were generally found to be easy to use, some limitations were noted regarding their performance and programmed content for dialog. Conclusions: Although chatbot technologies are well established and commonly used by the public, their development for people with dementia and their caregivers is in its infancy. Given the successful use of chatbots in other health care settings and for other applications, there are opportunities to integrate this technology into dementia care. However, more evidence-based chatbots that have undergone end user evaluation are needed to evaluate their potential to adequately educate and support these populations.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Characterizing Dementia Caregivers’ Information Exchange on Social Media: Exploring an Expert-Machine Co-development Process

Background: Social media platforms have introduced new opportunities for supporting family caregivers of persons with Alzheimer’s disease and related dementias (ADRD). Existing methods for exploring online information seeking and sharing (i.e., information exchange) involve examining online posts via manual analysis by human experts or fully automated data-driven exploration through text classification. Both methods have limitations. Design: In this paper, we propose an innovative expert–machine co-development (EMC) process that enables rich interactions and co-learning between human experts and automatic algorithms. Results: By applying the EMC in analyzing ADRD caregivers’ online behaviors, we illustrate steps required by the EMC, and demonstrate its effectiveness in enhancing human experts’ representations of ADRD caregivers’ online information exchange and developing more accurate automatic classification models for ADRD caregivers’ information exchange.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Carers' involvement in telecare provision by local councils for older people in England: perspectives of council telecare managers and stakeholders

Background: This paper explores telecare manager and other 'stakeholder' perspectives on the nature, extent and impact of family and other unpaid/informal carers' involvement in the provision of telecare equipment and services for older people. Methods: Data used in the paper are derived from a larger study on telecare provision by local councils in England. The paper aims to add to the growing evidence about carers' engagement with electronic assistive technology and telecare, and considers this in the context of typologies of professionals' engagement with carers. How carers are involved in telecare provision is examined primarily from the perspectives of senior managers responsible for telecare services who responded to an online survey and/or were interviewed in 2016 as part of a wider study. The perspectives of three unpaid carers were captured in a separate strand of the main study, which comprised more detailed case study interviews within four selected councils. Thematic and comparative analysis of both qualitative and quantitative survey data revealed the varied involvements and responsibilities that carers assumed during the telecare provision process, the barriers that they needed to overcome and their integration in local council strategies. Results: Findings are discussed in the context of Twigg and Atkin's typology of carer support. They suggest that carers are mainly perceived as 'resources' and involvement is largely taken for granted. There are instances in which carers can be seen as 'co-workers': this is mainly around responding to alerts generated by the telecare user or by monitored devices, but only in those councils that fund response services. Though some participants felt that telecare devices could replace or 'supersede' hands-on care that involved routine monitoring of health and wellbeing, it was also acknowledged that its use might also place new responsibilities on carers. Furthermore, the study found that meeting carers' own rights as 'co-clients' was little acknowledged.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Caregiving during the Time of COVID-19: A Multi-State Qualitative Study of Family Caregiver Experiences and Decision-Making

Research Objective: COVID-19 poses unique challenges to family caregivers. This study explores how family caregivers for older adults with cognitive impairments experience and make decisions about caregiving during a global pandemic. Study Design: Using purposive sampling, family caregivers participated in open-ended qualitive interviews (2019–2020), until thematic saturation was reached. Questions broadly examined caregivers' experiences and decisions, focusing on decisions made around type of care setting. Questions about responses to the Pandemic were added as events unfolded. States were selected to represent variation in Home and Community Based Service (HCBS) expenditures as a percentage of total Medicaid long-term services and support expenditures. They include; Arkansas, Florida, Illinois, Minnesota, New York, North Carolina, and Oregon. All participants were actively involved in the care of someone with dementia or another cognitive impairment over the age of 60. Population Studied 63 family caregivers were interviewed across eight states. About 89% of participants were female, 78% white, 10% black, 5% Asian, 3% biracial, 2% Native American. 36% of respondents reported that those they care for receive Medicaid. Principal Findings: This analysis focused on several COVID-related caregiver decisions: changes in care, challenges with care utilization and access, and policies or changes in care that were helpful during the pandemic were of focus. Four key themes emerged. First, family caregivers experienced communication challenges with long term care facilities often due to COVID-19 restriction policies. They reported an inability to asses care quality, participate in medical appointments, or communicate with their loved ones. Second, some families chose to cease the care supports they were receiving. Participants cited concern about the virus itself, and about indirect pandemic effects such as their loved ones experiencing confusion, loneliness, and poor care. Third, many respondents expressed the desire to avoid future nursing care, and expressed hesitancy towards seeking HCBS until the pandemic is curbed. Finally, many caregivers reported that telemedicine and other remote health care interventions improved their workload and service access. Conclusions: We examined how the pandemic has impacted decision-making among caregivers of older adults with cognitive impairments. Family caregivers experienced significant concern about COVID-19 itself, and about the indirect consequences of caregiving caused by the pandemic. Caregivers have also shown flexibility and adaptability in ceasing selected services, contingently continuing services, and utilizing telemedicine and other remote healthcare interventions to protect their loved ones. Many family caregivers utilized remote health care interventions such telemedicine, no-contact prescription and grocery delivery. Such measures improved service access and reduced caregiver workload. Implications for Policy or Practice Given the persistent challenges posed by COVID-19, long term service organizations have an opportunity to enhance their policies to meet the needs of caregivers and those they care for. First, there is a need to expand and continue telemedicine and other remote healthcare interventions, while adapting these technologies to the needs of families. Second, bolstering communication supports when on lock down in nursing facilities may reduce confusion and feelings of isolation. Finally, procedures are needed for safe and trusted pathways to utilize HCBS and nursing care during a pandemic including sufficient PPE, increased staffing, and utilization of evidence-based protocols. 

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Caregiver Response to an Online Dementia and Caregiver Wellness Education Platform

Background: Web-based educational interventions are emerging as a potential solution to improve caregiver dementia knowledge and overall well-being. Objective: To assess the feasibility of delivering a web-based intervention for dementia caregivers by examining: 1) engagement with the online platform, 2) skill implementation, and 3) changes on outcome metrics over the 30-day study period. Methods: Enrolled participants were onboarded by a trained research coordinator and provided 24/7 access to the platform over 30 days. At study onset and completion, caregivers completed assessments of care recipient dementia severity and neuropsychiatric symptoms along with instruments which measured dementia knowledge, caregiver burden, and carer experience. Results: Of 84 referrals, 60 caregivers met study inclusion criteria and 55 completed pre and post study measures. Caregivers completed an average of 8 hours of learning over the 30-day web-based intervention, with 84.4%of participants reporting using at least one skill they learned from the online platform. Eighty-nine percent of participants reported high satisfaction with the web-based educational intervention. There were small effect sizes for decreases in NPIQ neuropsychiatric symptom severity and caregiver distress scores from pre- to post-intervention. Small effect sizes were observed for changes in caregiver burden from pre- to post-intervention among caregivers who perceived their care recipient as having high global deterioration. Conclusion: Findings show online educational programs are feasible for informal family caregivers of dementia and have perceived value. Future studies should address caregiver response to online education in less severe versus more severe care recipients, and explore the value of caregiver online platforms in diverse caregiver samples. 

Original source (some source materials require subscription or permission to access)

Acceptance and commitment therapy for fatigue interference in advanced gastrointestinal cancer and caregiver burden: protocol of a pilot randomized controlled trial

Background: Fatigue interference with activities, mood, and cognition is one of the most prevalent and bothersome concerns of advanced gastrointestinal (GI) cancer patients. As fatigue interferes with patient functioning, family caregivers often report feeling burdened by increasing responsibilities. Evidence-based interventions jointly addressing cancer patient fatigue interference and caregiver burden are lacking. In pilot studies, acceptance and commitment therapy (ACT) has shown promise for addressing symptom-related suffering in cancer patients. The current pilot trial seeks to test a novel, dyadic ACT intervention for both advanced GI cancer patients with moderate-to-severe fatigue interference and their family caregivers with significant caregiving burden or distress. Methods: A minimum of 40 patient-caregiver dyads will be randomly assigned to either the ACT intervention or an education/support control condition. Dyads in both conditions attend six weekly 50-min telephone sessions. Outcomes are assessed at baseline as well as 2 weeks and 3 months post-intervention. We will evaluate the feasibility, acceptability, and preliminary efficacy of ACT for improving patient fatigue interference and caregiver burden. Secondary outcomes include patient sleep interference and patient and caregiver engagement in daily activities, psychological flexibility, and quality of life. We will also explore the effects of ACT on patient and caregiver physical and mental health service use. Discussion: Findings will inform a large-scale trial of intervention efficacy. Results will also lay the groundwork for further novel applications of ACT to symptom interference with functioning and caregiver burden in advanced cancer. Trial Registration ClinicalTrials.gov, NCT04010227. Registered 8 July 2019.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Business Models of eHealth Interventions to Support Informal Caregivers of People With Dementia in the Netherlands: Analysis of Case Studies

Background: In academic research contexts, eHealth interventions for caregivers of people with dementia have shown ample evidence of effectiveness. However, they are rarely implemented in practice, and much can be learned from their counterparts (commercial, governmental, or other origins) that are already being used in practice. Objective: This study aims to examine a sample of case studies of eHealth interventions to support informal caregivers of people with dementia that are currently used in the Netherlands; to investigate what strategies are used to ensure the desirability, feasibility, viability, and sustainability of the interventions; and to apply the lessons learned from this practical, commercial implementation perspective to academically developed eHealth interventions for caregivers of people with dementia. Methods: In step 1, experts (N=483) in the fields of dementia and eHealth were contacted and asked to recommend interventions that met the following criteria: delivered via the internet; suitable for informal caregivers of people with dementia; accessible in the Netherlands, either in Dutch or in English; and used in practice. The contacted experts were academics working on dementia and psychosocial innovations, industry professionals from eHealth software companies, clinicians, patient organizations, and people with dementia and their caregivers. In step 2, contact persons from the suggested eHealth interventions participated in a semistructured telephone interview. The results were analyzed using a multiple case study methodology. Results: In total, the response rate was 7.5% (36/483), and 21 eHealth interventions for caregivers of people with dementia were recommended. Furthermore, 43% (9/21) of the interventions met all 4 criteria and were included in the sample for the case study analysis. Of these 9 interventions, 4 were found to have developed sustainable business models and 5 were implemented in a more exploratory manner and relied on research grants to varying extents, although some had also developed preliminary business models. Conclusions: These findings suggest that the desirability, feasibility, and viability of eHealth interventions for caregivers of people with dementia are linked to their integration into larger structures, their ownership and support of content internally, their development of information and communication technology services externally, and their offer of fixed, low pricing. The origin of the case studies was also important, as eHealth interventions that had originated in an academic research context less reliably found their way to sustainable implementation. In addition, careful selection of digital transformation strategies, more intersectoral cooperation, and more funding for implementation and business modeling research are recommended to help future developers bring eHealth interventions for caregivers of people with dementia into practice.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

"At the End We Feel Forgotten": Needs, Concerns, and Advice from Blogs of Dementia Family Caregivers

Background: Illness blogs have been used by many individuals to describe their experiences, share knowledge, and gather support. The purpose of this study was to identify needs, concerns, and advice from the blogs of caregivers caring for a person with dementia at the end of life (EOL). Design: A qualitative thematic analysis was performed of 192 blog postings from six dementia family caregivers during the EOL. A Google search using a systematic identification method was followed. Caregivers were females caring for mothers (n = 5) and husbands (n = 1). Results: Themes varied by EOL stage within the contextual environment of Grief/Loss, Family, and Spirituality. Pre-death themes were Care Transitions and Quality; dying were Physical and Emotional Aspects; and post-death were Relief and Remembering. Four additional themes transitioned across stages: Decision-Making, Health Care Providers, Advice, and Caregiver Support. Conclusions: Findings suggest caregiver needs, concerns, and advice vary by EOL stage. Implications for tailored interventions should be considered.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Assistive technologies for children with cognitive and/or motor disabilities: interviews as a means to diagnose the training needs of informal caregivers

Purpose: The present study seeks to survey information and training needs of informal caregivers related to the use of assistive technologies at home, so as to, in the near future, try to meet them. Therefore, the full aim of this study is to contribute to reducing technology abandonment and to enhancing its use in the family setting by children with cognitive and/or motor limitations. Materials and methods: Content analysis of a set of ten interviews with informal caregivers of children and youngsters with cognitive and/or motor disabilities. Results: Assistive technologies open a wide range of opportunities, mostly to students whose learning skills diverge from standard development. They promote communication, independence as well as inclusion of children with cognitive and/or motor disabilities. Despite the human and material resources available, the implementation of assistive technologies in many family settings is still a struggling task. The results reveal a perspective on (i) the interaction between those caregivers and their children, (ii) children’s skills in using assistive technology, (iii) caregivers’ digital literacy and (iv) their training needs. Conclusions: The present paper highlights the fact that carrying out interviews with informal caregivers leads to obtaining significant data for a diagnosis of the use of assistive technologies in the family setting and to assess the needs of informal caregivers. From this study, the need to provide caregivers with further training on assistive technologies emerges as preponderant, and to improve caregivers’ skills in the search for and access to practical information.Implication for Rehabilitation Cognitive and/or motor disabilities impact on communication, independence and also on the full inclusion of children, especially when efforts developed at school do not have any follow up at home. Endowing informal caregivers with the knowledge and skills to use assistive devices with their children is a step forward to their full development. Interviews conducted with informal caregivers are a means to gaining insights into understanding the reasons behind assistive technology abandonment at home. 

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Adapting the telephone assessment and skill‐building kit to the telehealth technology preferences of stroke family caregivers

Background: Family caregivers exhibit a wide variety of needs and concerns while providing care to stroke survivors after discharge to the home setting. Methods: We report the results of two related studies utilizing a multimethod design in which stroke family caregivers (N = 12; N = 10) were interviewed using open‐ended questions, followed by written caregiver ratings regarding the types of telehealth technologies they preferred for the telephone assessment and skill‐building kit (TASK III). Findings: Qualitative data were analyzed using content analysis procedures with a provisional "start list" of codes in a matrix template based on the types of telehealth technologies in the rating forms. Descriptive statistics were used to analyze ratings with response scales ranging from 1 = strongly disagree to 5 = strongly agree. Average ratings for the telehealth technologies for the TASK III resource guide were obtained for the mailed hard copy binder (M = 3.58–4.13; SD = 0.35–1.00), an interactive website (https://www.task3web.com/; M = 3.86–4.17; SD =.72–1.07), an eBook (M = 3.17–3.67; SD = 0.84–1.17), and a USB drive (M = 3.75–4.00; SD =.82–.96). Average ratings for the telehealth technologies for the TASK III calls with the nurse were obtained for the use of a telephone (M = 4.36–5.00; SD = 0.00–0.89), FaceTime on an iOS device (e.g., iPhone or iPad; M = 3.73–4.40; SD = 0.79–0.98), or online videoconferencing (M = 3.17–3.50; SD = 0.82–1.47). Qualitative data revealed a wide variety of preferences for each type of telehealth technology, with advantages and disadvantages of each. Conclusion: The findings underscored the importance of offering multiple telehealth technology options to stroke family caregivers. Future studies are recommended that employ randomized control trial methodology to test theoretically‐based interventions that are based on stroke family caregiver preferences for telehealth technologies.

Access source material through DOI

Adapting ENABLE for patients with advanced cancer and their family caregivers in Singapore: a qualitative formative evaluation

Background: ENABLE (Educate, Nurture, Advise, Before Life Ends) is a nurse coach-led, early palliative care model for patients with advanced cancer and their family caregivers. Content covered includes problem-solving, advance care planning, symptom management and self-care. The aim was to evaluate the cultural acceptability of ENABLE among patients with advanced cancer and their caregivers in Singapore and identify modifications for an adapted ENABLE-SG model. Methods: Qualitative formative evaluation with a thematic analysis approach in two hospitals in Singapore, involving patients (n = 10), family caregivers (n = 11) and healthcare professionals (n = 10) who care for patients with advanced cancer. Semi-structured interviews were conducted to explore (i) the main needs and challenges facing individuals with advanced cancer and their family caregivers; (ii) patient involvement in healthcare decision making; and (iii) content and delivery of ENABLE. Results: While physical needs were largely well met, participants expressed that psychosocial care was delivered too late in the illness trajectory. Healthcare decision making approaches varied from a patient-centred shared decision-making model to a family-centred model where patients may not know their cancer diagnosis and prognosis. The content was considered to be relevant, comprehensive and practical; financial assistance, adjustment to body image, and evaluation of complementary therapy were also recommended. Face-to-face rather than telephone sessions were preferred to facilitate rapport building. Conclusions: ENABLE was broadly acceptable with some modifications, including adjusting the content to ensure it can be delivered even if the patient is not fully aware of cancer diagnosis and delivering the first session face-to-face with flexibility for subsequent sessions.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Using an Electronic App to Promote Home-Based Self-Care in Older Patients With Heart Failure: Qualitative Study on Patient and Informal Caregiver Challenges

Background: Heart failure (HF) affects many older individuals in North America, with recurrent hospitalizations despite postdischarge strategies to prevent readmission. Proper HF self-care can potentially lead to better clinical outcomes, yet many older patients find self-care challenging. Mobile health (mHealth) apps can provide support to patients with respect to HF self-care. However, many mHealth apps are not designed to consider potential patient barriers, such as literacy, numeracy, and cognitive impairment, leading to challenges for older patients. We previously demonstrated that a paper-based standardized diuretic decision support tool (SDDST) with daily weights and adjustment of diuretic dose led to improved self-care.; Objective: The aim of this study is to better understand the self-care challenges that older patients with HF and their informal care providers (CPs) face on a daily basis, leading to the conversion of the SDDST into a user-centered mHealth app.; Methods: We recruited 14 patients (male: 8/14, 57%) with a confirmed diagnosis of HF, aged ≥60 years, and 7 CPs from the HF clinic and the cardiology ward at the Hamilton General Hospital. Patients were categorized into 3 groups based on the self-care heart failure index: patients with adequate self-care, patients with inadequate self-care without a CP, or patients with inadequate self-care with a CP. We conducted semistructured interviews with patients and their CPs using persona-scenarios. Interviews were transcribed verbatim and analyzed for emerging themes using an inductive approach.; Results: Six themes were identified: usability of technology, communication, app customization, complexity of self-care, usefulness of HF-related information, and long-term use and cost. Many of the challenges patients and CPs reported involved their unfamiliarity with technology and the lack of incentive for its use. However, participants were supportive and more likely to actively use the HF app when informed of the intervention's inclusion of volunteer and nurse assistance.; Conclusions: Patients with varying self-care adequacy levels were willing to use an mHealth app if it was simple in its functionality and user interface. To promote the adoption and usability of these tools, patients confirmed the need for researchers to engage with end users before developing an app. Findings from this study can be used to help inform the design of an mHealth app to ensure that it is adapted for the needs of older individuals with HF. 

Access source material through DOI

Telebehavioral Interventions for Family Caregivers of Individuals With Traumatic Brain Injury: A Systematic Review

Objective: To identify and examine research on telebehavioral interventions that support family caregivers of individuals with traumatic brain injury (TBI). Methods: A systematic review using the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. Studies published between 1999 and 2019 were identified through CINHAL, EMBASE, ERIC, PsycINFO, PubMed, Scopus, and Web of Science. Results: Twelve studies met inclusion criteria; 3 used quasi-experimental designs, 7 were randomized controlled trials (RCTs) with 1-group comparison, 1 was RCT with a 2-group comparison, and 1 was RCT with a 3-group comparison. Outcomes primarily focused on caregiver depression, distress, self-efficacy, anxiety, stress, burden, and problem solving. Eleven studies found significant differences between the intervention and control groups on at least 1 outcome indicator, and 10 of these reported effect sizes supporting clinical significance. However, studies lacked data on caregiver and injury characteristics, and most studies lacked diverse study samples that may contribute to psychosocial outcomes. Nearly all studies demonstrated methodological bias (PEDro-P M = 5.5). Conclusions: Caregiver psychosocial outcomes following telebehavioral interventions were generally positive, but caution should be used when generalizing outcomes due to lack of sample diversity. Additional research is needed to assess how caregiver demographics and injury severity moderate caregiver outcomes.

Access source material through DOI

Smartphone-Enabled, Telehealth-Based Family Conferences in Palliative Care During the COVID-19 Pandemic: Pilot Observational Study

Background: In the palliative care setting, infection control measures implemented due to COVID-19 have become barriers to end-of-life care discussions (eg, discharge planning and withdrawal of life-sustaining treatments) between patients, their families, and multidisciplinary medical teams. Strict restrictions in terms of visiting hours and the number of visitors have made it difficult to arrange in-person family conferences. Phone-based telehealth consultations may be a solution, but the lack of nonverbal cues may diminish the clinician-patient relationship. In this context, video-based, smartphone-enabled family conferences have become important. Objective: We aimed to establish a smartphone-enabled telehealth model for palliative care family conferences. Our model integrates principles from the concept of shared decision making (SDM) and the value, acknowledge, listen, understand, and elicit (VALUE) approach. Methods: Family conferences comprised three phases designed according to telehealth implementation guidelines-the previsit, during-visit, and postvisit phases. We incorporated the following SDM elements into the model: "team talk," "option talk," and "decision talk." The model has been implemented at a national cancer treatment center in Taiwan since February 2020. Results: From February to April 2020, 14 telehealth family conferences in the palliative care unit were analyzed. The patients' mean age was 73 (SD 10.1) years; 6 out of 14 patients (43%) were female and 12 (86%) were married. The primary caregiver joining the conference virtually comprised mostly of spouses and children (n=10, 71%). The majority of participants were terminally ill patients with cancer (n=13, 93%), with the exception of 1 patient with stroke. Consensus on care goals related to discharge planning and withdrawal of life-sustaining treatments was reached in 93% (n=13) of cases during the family conferences. In total, 5 families rated the family conferences as good or very good (36%), whereas 9 were neutral (64%). Conclusions: Smartphone-enabled telehealth for palliative care family conferences with SDM and VALUE integration demonstrated high satisfaction for families. In most cases, it was effective in reaching consensus on care decisions. The model may be applied to other countries to promote quality in end-of-life care in the midst of the COVID-19 pandemic.

Access source material through DOI

Remote Monitoring Technologies in Dementia Care: An Interpretative Phenomenological Analysis of Family Caregivers' Experiences

The desire to maintain an independent lifestyle is one shared by an increasing number of older adults. Adult children, spouses, siblings, and other relatives, also known as family caregivers, play an integral role in helping their loved ones maintain independence. Remote monitoring technologies (RMTs) such as wearable sensors, mobile emergency devices, smartphone apps, and webcams can be used to monitor, sense, record, and communicate a person's daily activities. However, understanding is limited of the family caregiver's needs and perceptions of RMTs used in a home-based setting. The purpose was to explore how family caregivers perceive RMTs and their use for monitoring and supporting their care recipients who choose to live independently. We used a survey to capture some basic characteristics of family caregivers, what they know about RMTs, and to recruit interview participants. We conducted semi-structured interviews with four participants who shared the commonality of caring for a relative with dementia. We reported the survey data using descriptive statistics and we applied interpretative phenomenological analysis (IPA) to analyze and report results from the interviews. Four themes emerged including the unique relationships that exist in family care, the risk-benefit conundrum that accompanies benefits and tradeoffs of RMT use, human-technology interaction and usability, and the importance of creating tailored solutions to facilitate RMT adoption and use. Our findings provide insight into factors impacting adoption and use.

Original source (some source materials require subscription or permission to access)

Promoting Health and Well-Being Through Mobile Health Technology (Roadmap 2.0) in Family Caregivers and Patients Undergoing Hematopoietic Stem Cell Transplantation: Protocol for the Development of a Mobile Randomized Controlled Trial

Background: Cancer patients who undergo allogeneic hematopoietic stem cell transplantation are among the most medically fragile patient populations with extreme demands for caregivers. Indeed, with earlier hospital discharges, the demands placed on caregivers continue to intensify. Moreover, an increased number of allogeneic hematopoietic stem cell transplantations are being performed worldwide, and this expensive procedure has significant economic consequences. Thus, the health and well-being of family caregivers have attracted widespread attention. Mobile health technology has been shown to deliver flexible, and time- and cost-sparing interventions to support family caregivers across the care trajectory. Objective: This protocol aims to leverage technology to deliver a novel caregiver-facing mobile health intervention named Roadmap 2.0. We will evaluate the effectiveness of Roadmap 2.0 in family caregivers of patients undergoing hematopoietic stem cell transplantation. Methods: The Roadmap 2.0 intervention will consist of a mobile randomized trial comparing a positive psychology intervention arm with a control arm in family caregiver-patient dyads. The primary outcome will be caregiver health-related quality of life, as assessed by the PROMIS Global Health scale at day 120 post-transplant. Secondary outcomes will include other PROMIS caregiver- and patient-reported outcomes, including companionship, self-efficacy for managing symptoms, self-efficacy for managing daily activities, positive affect and well-being, sleep disturbance, depression, and anxiety. Semistructured qualitative interviews will be conducted among participants at the completion of the study. We will also measure objective physiological markers (eg, sleep, activity, heart rate) through wearable wrist sensors and health care utilization data through electronic health records. Results: We plan to enroll 166 family caregiver-patient dyads for the full data analysis. The study has received Institutional Review Board approval as well as Code Review and Information Assurance approval from our health information technology services. Owing to the COVID-19 pandemic, the study has been briefly put on hold. However, recruitment began in August 2020. We have converted all recruitment, enrollment, and onboarding processes to be conducted remotely through video telehealth. Consent will be obtained electronically through the Roadmap 2.0 app. Conclusions: This mobile randomized trial will determine if positive psychology-based activities delivered through mobile health technology can improve caregiver health-related quality of life over a 16-week study period. This study will provide additional data on the effects of wearable wrist sensors on caregiver and patient self-report outcomes.

Access source material through DOI

Online resources for family caregivers of cognitively competent patients: A review of user-driven reputable health website content on caregiver communication with health professionals

Objective: Most patients want their family involved in consultations and decisions, however some family caregivers report feeling overwhelmed and unsure of their role. As caregivers are increasingly looking to medical websites for guidance, this study aimed to review reputable web-resources available to inform family caregivers on how to be involved in medical consultations and decisions. Methods: Google searches were performed using lay search strings, to imitate how a cancer caregiver may locate information. Relevant webpages were included if they were directed at caregivers and from a reputable health organisation. Qualitative content analyses were performed on the included webpages. Results: 22 webpages were included and 8 were directed at caregivers of cancer patients. Six key categories of information were identified: preparing for consultations, helping during consultations, advocating for the patient, decision-making, communicating in hospital settings, and communicating with family and friends. Conclusion: A range of online resources were found to guide family caregivers, particularly cancer caregivers, on involvement in consultations. However, few provided information to caregivers on complex situations such as treatment decision-making, advocating for patient's needs, and communicating in a hospital setting. Practice Implications: Clinicians can actively refer family caregivers to online resources that support caregiver communication in medical settings. 

Access source material through DOI

A Novel Educational Prescription Web-Based Application to Support Education for Caregivers of People Living With Dementia: Development and Usability Study With Clinicians

Background: It is estimated that 564,000 Canadians are currently living with dementia and there are approximately 486,000 to 1.1 million informal family/friend caregivers. Family/friend caregivers often receive little to no education or training about dementia but are expected to provide ongoing support for a complex condition. Web-based family/friend caregiver interventions may be helpful, but little is known about how best to implement them.; Objective: The objectives of this study were to 1) design and develop a novel education prescription application to help scale and spread web-based dementia education to family/friend caregivers, 2) conduct user testing, and 3) conduct a larger-scale field trial.; Methods: A novel education prescription web-based application was designed and developed. Initial user testing used task completion and the "think aloud" technique with a small sample of representative clinicians who work with people living with dementia and family/friend caregivers. Following iterative incorporation of feedback, a larger field trial was conducted with a convenience sample of clinicians. Account invitations were sent to 55 clinicians and, following a 2-month trial period, surveys were administered to participants including the System Usability Scale and the Net Promoter Score.; Results: During the initial user testing phase, participants (N=7) from representative disciplines easily completed associated tasks, and had very positive feedback with respect to the usability of the application. The System Usability Scale score during this phase was 91.4. Suggestions from feedback were incorporated into the application. During the larger field trial phase, participants (total N=55; activated account n=17; did not activate account n=38) were given access to the iGeriCare education prescription application. During this period, 2 participants created educational prescriptions; a total of 3 educational prescriptions were sent. Survey completers who did not activate their account (n=5) identified that their lack of use was due to time constraints, competing priorities, or forgetting to use the application. Survey completers who activated their account (n=5) identified their lower use was due to lack of time, lack of eligible family/friend caregivers during trial period, and competing priorities due to the COVID-19 pandemic. The System Usability Scale score during this phase was 78.75, and the Net Promoter Score was 50.; Conclusions: Study findings indicate a generally positive response for the usability of a web-based application for clinicians to prescribe dementia education to family/friend caregivers. The dissonance between the promising data and widespread enthusiasm for the design and purpose of the education prescription application found in the initial user testing phase and subsequent lack of significant adoption in the field trial represents both an important lesson for other novel health technologies and a potential area for further investigation. Further research is required to better understand factors associated with implementation of this type of intervention and impact on dissemination of education to family/friend caregivers. 

Access source material through DOI

The necessity for sustainable intervention effects: lessons-learned from an experience sampling intervention for spousal carers of people with dementia

Caring for a person with dementia can be challenging over the years. To support family carers throughout their entire caregiving career, interventions with a sustained effectivity are needed. A novel 6-week mobile health (mHealth) intervention using the experience sampling method (ESM) showed positive effects on carers' well-being over a period of 2 months after the intervention. In this study, the effects after 6 months of the selfsame intervention were examined to evaluate the sustainability of positive intervention effects. The 6-week mHealth intervention consisted of an experimental group (ESM self-monitoring and personalized feedback), a pseudo-experimental group (ESM self-monitoring without feedback), and a control group (providing regular care without ESM self-monitoring or feedback). Carers' sense of competence, mastery, and psychological complaints (depression, anxiety and perceived stress) were evaluated pre- and post-intervention as well as at two follow-up time points. The present study focuses on the 6-month follow-up data (n = 50). Positive intervention effects on sense of competence, perceived stress, and depressive symptoms were not sustained over 6-month follow-up. The benefits of this mHealth intervention for carers of people living with dementia were not sustained over a long time. Similarly, other psychosocial interventions for carers of people with dementia rarely reported long-lasting effects. In order to sustainably contribute to carers' well-being, researchers and clinicians should continuously ensure flexible adjustment of the intervention and consider additional features such as ad-hoc counseling options and booster sessions. In this regard, mHealth interventions can offer ideally suited and unique opportunities.

Access source material through DOI

LEAVES (optimizing the mentaL health and resiliencE of older Adults that haVe lost thEir spouSe via blended, online therapy): Proposal for an Online Service Development and Evaluation

Background: Loss of a spouse is a frequent occurrence in later life. While most older adults successfully process this loss and will return to a normal life, about 10% of the individuals are unable to cope, and progress to prolonged grief (PG). PG, in turn, can result in mental and physical problems including poor sleep, cardiovascular problems, depression, and suicidal tendencies. Objective: LEAVES (optimizing the mentaL health and resiliencE of older Adults that haVe lost thEir spouSe via blended, online therapy) is an online bereavement program that will support the prevention and treatment of PG, so that elderly mourners can continue to lead an active, meaningful, and dignified life. LEAVES will cater to secondary end users (eg, family, informal caregivers) by reducing stress. Methods: LEAVES will help older adults to process the loss of a spouse in an online environment, which consists of (1) an existing online grief self-help program LIVIA, (2) the Before You Leave program that allows for storing personal memories, (3) a virtual agent platform, and (4) an accessible front-end design. LEAVES can detect persons at risk for complications, reveal negative trends in their emotional life, and act to counter such trends. The service relies on online support whenever possible but is blended with telephone or face-to-face counseling when necessary. Results: The project will take place between February 2020 and January 2023 and includes a real-life evaluation in which 315 end users will use the service across 3 countries (the Netherlands, Portugal, and Switzerland). The evaluation of LEAVES will focus on clinical effect, its business case, and technology acceptance. The results will pave the way for smooth integration into existing care paths and reimbursement schemes. Conclusions: The LEAVES service aims to soften the mourning process, prevents depression or social isolation, strengthens widow(er)s resilience and well-being, and quickens one's return to societal participation.

Access source material through DOI

Exploring perceptions toward home-care robots for older people in Finland, Ireland, and Japan: A comparative questionnaire study

Purpose: To clarify potential users' perceptions toward the development and social implementation of home-care robots in Japan, Ireland, and Finland. Methods: Unsigned, self-administered questionnaires were distributed to adults aged 65 or older, family caregivers, and home-care/health and social care professionals (HSCPs). A total of 1004 responses were collected. Results: In Japan, many people were already familiar with robots in their daily lives. The most notable finding about their perspectives on home-care robots was related to safety. Moreover, 93.7 % of the Japanese respondents said, "If the user cannot decide whether to use a home-care robot, family members who know the user well should decide," followed by 76.4 % in Ireland and 83.1 % in Finland (p < .001). In Ireland, 81.8 % of the respondents said, "I want to help other people and society by participating in the research and development of home-care robots" (Japan: 69.9 %; Finland: 67.5 %) (p = .006). In Finland, many people had a negative impression of robots compared to the other two countries. Finland had the highest percentage (75.4 %) of respondents who said, "Health care professionals should be allowed to use secondary information collected by a home-care robot" (Japan and Ireland: 64 %) (p = .024). Moreover, Ireland and Finland emphasized the need to guarantee the entitlement to receive human care. Conclusions: Devising optimal strategies for the development and social implementation of home-care robots by incorporating various perspectives while valuing human dignity will require examination of each country's characteristics with respect to history, culture, policies, and values related to robots.

Access source material through DOI

Exploring interface design to support caregivers' needs and feelings of trust in online content

Introduction: Family caregivers of people living with dementia require a range of accurate, current, and reliable information throughout the care trajectory. Much of this information is available online, however it can be difficult for caregivers to identify and decide what content is relevant to them. Little is known about how online design cues impact family caregivers' decision to assess how trustworthy information is and whether to engage with it.; Methods: Our exploratory research focused on the interface design of CARE-RATE, an online search tool intended to support more effective information searches for family caregivers seeking dementia care-related resources. Data from focus groups were coupled with design literature to inform the development of three mockups that were evaluated by seven dementia caregiver experts.; Results: Participants preferred a search bar design because of its simplicity, familiarity, and functionality. Design elements that impact trust included logos from reputable organizations, transparency of content author, and ratings from other caregivers.; Conclusion: Feelings of trust regarding information, including the ability to ascertain trustworthiness, is a major aspect of caregivers' willingness to engage with online content. Transparency and familiarity appear to be key elements that impact caregivers' trust in online information, which agrees with current web design research. 

Access source material through DOI

Exploring dementia family caregivers' everyday use and appraisal of technological supports

• Family dementia caregivers described use of several everyday technologies. • In this sample, common technology use patterns were shaped by the caregiving need. • Perceived utility, existing familiarity, and social resources promoted technology use. • Caregiver perspectives must be harnessed in the design and delivery of technology.

Family caregivers provide the majority of care for people with dementia, often balancing multiple caregiving roles. Technology-based interventions have demonstrated strong potential for supporting family caregivers in navigating these roles, yet translational uptake of these interventions remains limited. A comprehensive understanding of how caregivers engage and evaluate everyday technological supports is necessary to foster broader adoption. Through semi-structured interviews with 20 caregivers, the present study aimed to explore caregivers' everyday use and appraisal of technological supports. We found that caregivers use specific technological supports to meet specific caregiving needs (e.g. coordination, information seeking, direct care), and exhibit unique technology use patterns (e.g. trial-and-error) shaped by the caregiving need. Caregivers shared positive appraisals of technological supports for caregiving, citing the role of perceived utility, existing familiarity, and social resources in their acceptance and uptake. These findings illustrate important perspectives regarding everyday technology with immediate relevance for intervention design and functionality.

Access source material through DOI

The essential needs for home-care robots in Japan

Purpose This study aims to compare the level of needs for home-care robots amongst older adults, family caregivers and home-care staff and clarify the factors constituting these needs. Design/methodology/approach A cross-sectional, anonymous questionnaire survey was administered. It included 52 items related to needs for home-care robots rated on a four-point Likert scale. Means and standard deviations were calculated, and the Kruskal-Wallis test was performed for each item. Factor analysis was conducted on the needs of home-care staff. Findings Responses from 79 older adults, 54 family caregivers and 427 home-care staff were analysed. For all three groups, the level of agreement was high for the following needs: to inform family and support personnel immediately when older adults fall, about their location in case of natural disasters and about mismanagement of fire by older adults with dementia. For family caregivers and home-care staff, the level of need concerning monitoring was higher than for older adults. Extracted using factor analysis, the six factors representing the essential needs for home-care robots were risk minimisation, daily monitoring of the physical condition, supporting activities of daily living (ADL) and instrumental ADL, pre-empting problems, communication and miscellaneous support. Originality/value The results showed that the education of caregivers and the co-design process of robot development should involve home-care staff, older adults and family caregivers, which are important for making decisions about the use of home-care robots for older adults.

Access source material through DOI

Effectiveness of online dementia caregivers training programs: A systematic review

• Online interventions improve the condition and preparedness of caregivers, but future evaluations should consider study designs with multiple time points, control groups, and content that is personalized and interactive. • Results are encouraging that the training programs included in this systematic review improved caregiver knowledge, self-efficacy, anxiety, depression, caregiver burden and satisfaction. • Results, however, were less consistent when evaluating competency, stress, and care recipient status.

Over the next thirty years, Alzheimer's disease rates will increase alongside global aging. With the anticipated increase in demand, knowledgeable and skilled dementia caregivers will be in need across the long-term care spectrum. This study is a systematic review of online dementia-based training programs for formal and informal caregivers conducted to analyze evidence for using online training programs. We used the Preferred Reporting Items for Systematic Reviews (PRISMA) method. Methodological quality was assessed by the Cochrane Collaboration Back Review Group criteria. No previously published systematic review has analyzed online dementia training programs among both formal and informal caregivers. A systematic search of Web of Science, PsychInfo, and PubMed resulted in a final sample of (N = 19) studies. Results suggest that online interventions improve the condition and preparedness of caregivers, but future evaluations should consider study designs with multiple time points, control groups, and content that is personalized and interactive.

Access source material through DOI

Digital Technology, Health and Well-Being and the Covid-19 Pandemic: It's Time to Call Forward Informal Carers from the Back of the Queue

Objective: To describe the current challenges of family caregivers during and beyond the COVID-19 pandemic, the need for future digital innovations including involvement from professional nursing roles.; Data Sources: Review of recent literature from PubMed and relevant health and care reports.; Conclusion: The COVID-19 pandemic has caused monumental disruption to health care delivery and care. Caregivers face unprecedented levels of uncertainty: both for the people they care for and for their own health and well-being. Given that many carers face poor health and well-being, there is a significant risk that health inequalities will be increased by this pandemic, particularly for high-risk groups. Innovations including those supported and delivered by digital health could make a significant difference but careful planning and implementation is a necessity for widespread implementation.; Implications for Nursing Practice: Carers need to be championed in the years ahead to ensure they do not become left at the "back of the queue" for health and well-being equity. This situation has been exacerbated by the COVID-19 pandemic. Disruptive change to health and social care is now required where digital health solutions hold considerable promise, yet to be fully realized. 

Access source material through DOI

Development of a Daily Use Caregiver Sleep Survey (DUCSS) A Mixed-Method Design

Dementia caregiving is associated with depression, stress, and sleep disturbance. A daily use caregiver sleep survey (DUCSS) was developed to evaluate caregiver sleep. The tool was distributed to 24 informal caregivers and validated using the Rasch model, which indicated that the 17-item survey produced sleep quality measures of sufficient reliability for both group-level and individual-level comparisons (reliability = .87). The sample size was sufficient to provide precise measures of the item's position along the scale (item difficulty) (reliability = .85), so outcomes associated with sleep quality levels could be evaluated. We observed that the structure of the instrument is unidimensional, meaning the wording does not contain systematic biases peripheral to sleep quality. DUCSS is a useful tool for caregiver assessment and monitoring.

Access source material through DOI

Designing virtual communities of practice for informal caregivers of Alzheimer's patients: An integrative review

The main aim of this study is to review the literature to show how ideas around virtual communities of practice (VCoP) offer a model for supporting informal caregivers of Alzheimer's patients (caregivers) to learn how to deal with caregiving demands. Caregivers are individuals who have a significant personal relationship with and provide a broad range of unpaid assistance to an older person or an adult with a chronic or disabling condition outside of a professional or formal framework. This review will examine the current evidence on the needs of caregivers, identify dimensions to be considered in VCoP design and suggest further directions of research. The investigation is an integrative review that builds a bridge between different areas of work. The outcome is eleven dimensions for the design of successful VCoPs for caregivers: Network Structure, Technology, Moderator, Scale, Alignment, Community Design, Sense of Trust, Knowledge Sharing, Sustainability, Ethics and Evaluation. In addition, we propose a Tree Metaphor to present our research results. Well-designed interventions based on VCoP principles have the potential of addressing caregivers' needs. 

Access source material through DOI

Co-Design to Support the Development of Inclusive eHealth Tools for Caregivers of Functionally Dependent Older Persons: Social Justice Design

Background: eHealth can help reduce social health inequalities (SHIs) as much as it can exacerbate them. Taking a co-design approach to the development of eHealth tools has the potential to ensure that these tools are inclusive. Although the importance of involving future users in the development of eHealth tools to reduce SHIs is highlighted in the scientific literature, the challenges associated with their participation question the benefits of this involvement as co-designers in a real-world context. Objective: On the basis of Amartya Sen's theoretical framework of social justice, the aim of this study is to explore how co-design can support the development of an inclusive eHealth tool for caregivers of functionally dependent older persons. Methods: This study is based on a social justice design and participant observation as part of a large-scale research project funded by the Ministry of Families as part of the Age-Friendly Quebec Program (Quebec Ami des Aines). The analysis was based on the method developed by Miles and Huberman and on Paille's analytical questioning method. Results: A total of 78 people participated in 11 co-design sessions in 11 Quebec regions. A total of 24 preparatory meetings and 11 debriefing sessions were required to complete this process. Co-designers participated in the creation of a prototype to support the search for formal services for caregivers. The majority of participants (except for 2) significantly contributed to the tool's designing. They also incorporated conversion factors to ensure the inclusiveness of the eHealth tool, such as an adequate level of digital literacy and respect for the caregiver's help-seeking process. In the course of the experiment, the research team's position regarding its role in co-design evolved from a neutral posture and promoting co-designer participation to one that was more pragmatic. Conclusions: The use of co-design involving participants at risk of SHIs does not guarantee innovation, but it does guarantee that the tool developed will comply with their process of help-seeking and their literacy level. Time issues interfere with efforts to carry out a democratic process in its ideal form. It would be useful to single out some key issues to guide researchers on what should be addressed in co-design discussions and what can be left out to make optimal use of this approach in a real-world context.

Access source material through DOI

Caregiver satisfaction with a video telehealth home safety evaluation for dementia

Family caregivers are vital to telehealth-delivered dementia care. The objective of this mixed methods descriptive study conducted in the VA Bedford Healthcare System was to examine caregiver satisfaction with a video telehealth dementia home safety occupational therapy evaluation. Ten caregivers of Veterans with dementia participated. Ratings of caregiver satisfaction, measured by nine Likert scale items including ability to see and hear, were examined in relation to person and visit-related contextual factors extracted from research assistants' field notes, to develop an in-depth understanding of caregiver experience. Person factors included caregiver age and gender and Veteran cognitive status. Visit-related contextual factors included occurrence of technical glitches. Caregiver visit satisfaction was overall positive, with exceptions related to technological glitches and the presence of the person with dementia during the visit. Veteran cognitive status appeared to influence caregiver satisfaction. Implications of the study are that proactively addressing technical glitches and incorporating dementia stage-specific approaches may optimize caregivers' telehealth experience.

Access source material through DOI

Can caregivers trust information technology in the care of their patients? A systematic review

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) requires that healthcare providers allow patients to engage in their healthcare by allowing access to their health records. Often patients need informal caregivers including family members or others to help them with their care. This paper explores whether trust is a key factor for informal caregivers' decision to use health information technologies (HIT) including electronic health records (EHR), patient portals, mobile apps, or other devices to care for their patient. Six reviewers conducted a comprehensive search of four literature databases using terms that pertained to a caregiver and trust to investigate the role trust plays when caregivers use HIT. While trust is a key factor for the use of HIT, it the researchers only identified ten articles that met the research question thresholds. Four main topics of trust surfaced including perceived confidentiality, perceived security, technological malfunction, and trustworthiness of the information. Trust is a critical factor for informal caregivers when using HIT to assist in the care of their patient (child, loved one, parent, or acquaintance). Based on the findings, it is clear that more research on the use of HIT by caregivers is needed.

Access source material through DOI

Ambient assisted living technology-mediated interventions for older people and their informal carers in the context of healthy ageing: A scoping review

Background and Aims: There is a growing demand for health and social care services to provide technology-mediated interventions that promote the health and well-being of older people with health or care needs and of their informal carers. The objectives of this study were to scope and review the nature and extent of prior intervention studies involving ambient assisted living technology-mediated interventions for older people and their informal carers, and how and in what ways (if any) the goals and aims of these interventions reflected the domains of the World Health Organization framework for healthy ageing.; Methods: We conducted a scoping review. Data were collected between June and October 2018 with an updated search in October 2020. A total of 85 articles were eligible for inclusion.; Results: Nine categories described the aims and content of the included studies. The healthy ageing domain "Ability to meet basic needs" was mirrored in four categories, whereas "Ability to contribute to society" was not addressed at all.; Conclusion: The ways in which domains of healthy ageing are mirrored suggest that there is an emphasis on individual factors and individual responsibility, and a lack of attention given to broader, environmental factors affecting healthy ageing. Only a few of the studies used a dyadic approach when assessing health outcomes concerning older people and their informal carers. 

Access source material through DOI

Young adult cancer caregivers' use of social media for social support

Objective: To describe how young adult cancer caregivers (YACC) use social media for social support during a cancer experience. Methods: Eligible YACC were 18 to 39 years, used Facebook and/or Instagram at least once per week, and cared for an adult cancer patient diagnosed 6 months to 5 years prior (N = 34). Recruitment of a cross-sectional sample occurred through oncology clinics in Utah and online advertising by caregiving and cancer organizations from September 2017 to June 2018. Semi-structured telephone interviews were recorded, transcribed, iteratively coded, and qualitatively analyzed, yielding four categories concerning how YACC use social media. Results: Caregivers were most commonly spouses aged 29 years on average (range 21-38); cancer patients were 37 years (range 19-76). Analysis yielded four distinct yet related categories: Category 1: Posting about cancer on social media often begins as a strategy for YACC to efficiently provide updates about the cancer patient. Category 2: Caregivers who actively post on social media experience a variety of different functional social supports to which they otherwise would not have access. Category 3: Posting about cancer online presents an opportunity for negative consequences. Category 4: Potential for negative consequences influences how some caregivers use social media. Conclusions: Supportive services, including social media-based supports, are needed for YACC in formats that are convenient for them as they balance their caretaking duties with their daily lives.

Access source material through DOI

Why Older Adults and Their Children Disagree About In-Home Surveillance Technology, Sensors, and Tracking

Background and Objectives Despite the surveilling nature of technologies that allow caregivers to remotely monitor location, movements, or activities, the potential differences in comfort with remote monitoring between caregivers and care recipients have not been examined in depth. On the dyad and aggregate level, we compare preferences of older adult women and their adult children for three remote monitoring technologies. Their assessments of each technology's impact on privacy, safety, independence, freedom, relationship with family member, social life, and identity are also compared. Research Design and Methods This dyadic study used cognitive-based interview probing and value-centered design methods. Twenty-eight individual, in-depth, structured interviews were conducted with 18 women who are Meals on Wheels clients and 10 of their adult children. Results Meals on Wheels participants reported multiple chronic conditions and an average of 1.7 ADL and 3.3 IADL difficulties; two thirds were enrolled in Medicaid. Adult children preferred each technology more than their mothers did and underestimated both their mothers' ability to comprehend the functions of the technologies and the importance of engaging them fully in decision making. Most were confident that they could persuade their mothers to adopt. For both groups, privacy was the most-cited concern, and participants perceived significant overlap between values of privacy, independence, identity, and freedom. Discussion and Implications Studying privacy in isolation overlooks privacy's instrumental role in enabling other values. Shared decision-making tools are needed to promote remote monitoring use consistent with older adults' values and to prevent conflict and caregiver overreach.

Access source material through DOI

Understanding the Experience of Cancer Pain From the Perspective of Patients and Family Caregivers to Inform Design of an In-Home Smart Health System: Multimethod Approach

Background: Inadequately managed pain is a serious problem for patients with cancer and those who care for them. Smart health systems can help with remote symptom monitoring and management, but they must be designed with meaningful end-user input.; Objective: This study aims to understand the experience of managing cancer pain at home from the perspective of both patients and family caregivers to inform design of the Behavioral and Environmental Sensing and Intervention for Cancer (BESI-C) smart health system.; Methods: This was a descriptive pilot study using a multimethod approach. Dyads of patients with cancer and difficult pain and their primary family caregivers were recruited from an outpatient oncology clinic. The participant interviews consisted of (1) open-ended questions to explore the overall experience of cancer pain at home, (2) ranking of variables on a Likert-type scale (0, no impact; 5, most impact) that may influence cancer pain at home, and (3) feedback regarding BESI-C system prototypes. Qualitative data were analyzed using a descriptive approach to identity patterns and key themes. Quantitative data were analyzed using SPSS; basic descriptive statistics and independent sample t tests were run.; Results: Our sample (n=22; 10 patient-caregiver dyads and 2 patients) uniformly described the experience of managing cancer pain at home as stressful and difficult. Key themes included (1) unpredictability of pain episodes; (2) impact of pain on daily life, especially the negative impact on sleep, activity, and social interactions; and (3) concerns regarding medications. Overall, taking pain medication was rated as the category with the highest impact on a patient's pain (=4.79), followed by the categories of wellness (=3.60; sleep quality and quantity, physical activity, mood and oral intake) and interaction (=2.69; busyness of home, social or interpersonal interactions, physical closeness or proximity to others, and emotional closeness and connection to others). The category related to environmental factors (temperature, humidity, noise, and light) was rated with the lowest overall impact (=2.51). Patients and family caregivers expressed receptivity to the concept of BESI-C and reported a preference for using a wearable sensor (smart watch) to capture data related to the abrupt onset of difficult cancer pain.; Conclusions: Smart health systems to support cancer pain management should (1) account for the experience of both the patient and the caregiver, (2) prioritize passive monitoring of physiological and environmental variables to reduce burden, and (3) include functionality that can monitor and track medication intake and efficacy; wellness variables, such as sleep quality and quantity, physical activity, mood, and oral intake; and levels of social interaction and engagement. Systems must consider privacy and data sharing concerns and incorporate feasible strategies to capture and characterize rapid-onset symptoms. 

Access source material through DOI

A technology-enhanced model of care for transitional palliative care versus attention control for adult family caregivers in rural or medically underserved areas: study protocol for a randomized controlled trial

Background: Transitioning care from hospital to home is associated with risks of adverse events and poor continuity of care. These transitions are even more challenging when new approaches to care, such as palliative care, are introduced before discharge. Family caregivers (FCGs) are expected to navigate these transitions while also managing care. In addition to extensive caregiving responsibilities, FCGs often have their own health needs that can inhibit their ability to provide care. Those living in rural areas have even fewer resources to meet their self-care and caregiving needs. The purpose of this study is to test the efficacy and cost-effectiveness of an intervention to improve FCGs' health and well-being. The intervention uses video visits to teach, guide, and counsel FCGs in rural areas during hospital-to-home transitions. The intervention is based on evidence of transitional and palliative care principles, which are individualized to improve continuity of care, provide caregiver support, enhance knowledge and skills, and attend to caregivers' health needs. It aims to test whether usual care practices are similar to this technology-enhanced intervention in (1) caregiving skills (e.g., caregiving preparedness, communication with clinicians, and satisfaction with care), (2) FCG health outcomes (e.g., quality of life, burden, coping skills, depression), and (3) cost. We describe the rationale for targeting rural caregivers, the methods for the study and intervention, and the analysis plan to test the intervention's effect. Methods: The study uses a randomized controlled trial design, with FCGs assigned to the control condition or the caregiver intervention by computer-generated lists. The intervention period continues for 8 weeks after care recipients are discharged from the hospital. Data are collected at baseline, 2 weeks, 8 weeks, and 6 months. Time and monetary costs from a societal perspective are captured monthly. Discussion: This study addresses 2 independent yet interrelated health care foci-transitional care and palliative care-by testing an intervention to extend palliative care practice and improve transition management for caregivers of seriously ill patients in rural areas. The comprehensive cost assessment will quantify the commitment and financial burden of FCGs. Trial Registration: ClinicalTrials.gov NCT03339271 . Registered on 13 November 2017. Protocol version: 11. 

Access source material through DOI

TALKING TIME: A pilot randomized controlled trial investigating social support for informal caregivers via the telephone

Background: Caring for people with dementia at home requires considerable time, organization and commitment. Therefore, informal caregivers of people with dementia are often overburdened. This study examined the effects of the telephone-based Talking Time intervention, which is an approach used to strengthen the psychological health-related quality of life (HRQoL) and social support of informal caregivers of people with dementia living at home. Methods: This study was a Medical Research Council framework phase two randomized controlled trial. The intervention consisted of a preliminary talk, information booklet, six structured telephone-based support group meetings and a structured written self-evaluation of each support group meeting. The control participants performed their usual individual self-organized care. After completing the data collection, the control group received the Talking Time intervention for fidelity reasons. The primary outcome was the self-rated psychological HRQoL of the informal caregivers, which was measured with the mental component summary of the General Health Survey Questionnaire Short Form 12 (SF-12). Results: Thirty-eight informal caregivers and their relatives were included and allocated to the intervention or control groups (n = 19 each). After 3 months, the Talking Time intervention group demonstrated an increase in the self-rated psychological HRQoL scores, whereas the scores decreased in the control group. However, the standardized effect size of 1.65 (95% Confidence Interval, - 0.44 - 3.75) was not significant. Additionally, the secondary outcomes demonstrated no significant results. The differences between the groups in most outcomes were in the expected direction. No adverse effects were identified due to the intervention. Conclusions: The Talking Time intervention is feasible and shows nonsignificant promising results with regard to the self-rated psychological HRQoL. After further adjustment, the intervention needs to be evaluated in a full trial. Trial Registration: Clinical Trials: NCT02806583 , June 9, 2016 (retrospectively registered).

Access source material through DOI

A Smart Health Platform for Measuring Health and Well-Being Improvement in People With Dementia and Their Informal Caregivers: Usability Study

Background: Dementia is a neurodegenerative chronic condition characterized by a progressive decline in a person's memory, thinking, learning skills, and the ability to perform activities of daily living. Previous research has indicated that there are many types of technology interventions available in the literature that have shown promising results in improving disease progression, disease management, and the well-being of people with dementia (PwD) and their informal caregiver, thus facilitating dementia care and living. Technology-driven home care interventions, such as Connected Health (CH), could offer a convenient and low-cost alternative to traditional home care, providing an informal caregiver with the support they may need at home while caring for a PwD, improving their physical and mental well-being.; Objective: This study aimed (1) to create a multidimensional profile for evaluating the well-being progression of the PwD-informal caregiver dyad for a year during their use of a CH platform, designed for monitoring PwD and supporting their informal caregivers at home, and (2) to conduct a long-term follow-up using the proposed well-being profile at different time-interval evaluations.; Methods: The PwD-informal caregiver well-being profile was created based on the World Health Organization International Classification of Functioning considering the following outcomes: functional status, cognitive status, and quality of life for the PwD and mental well-being, sleeping quality, and burden for the informal caregiver. Over a year, comprehensive assessments of these outcomes were conducted every 3 months to evaluate the well-being of PwD-informal caregivers, using international and standardized validated questionnaires. Participants' demographic information was analyzed using descriptive statistics and presented as means and SDs. A nonparametric Friedman test was used to analyze the outcome changes and the progression in the PwD-caregiver dyads and to determine if those changes were statistically significant.; Results: There were no significant changes in the well-being of PwD or their caregivers over the year of follow-up, with the majority of the PwD-caregiver dyads remaining stable. The only instances in which significant changes were observed were the functional status in the PwD and sleep quality in their caregivers. In each of these measures, post hoc pairwise comparisons did not indicate that the changes observed were related to the deployment of the CH platform.; Conclusions: The follow-up of this population of PwD and their informal caregivers has shown that disease progression and physical and mental well-being do not change significantly during the time, being a slow and gradual process. The well-being profile created to analyze the potential impact of the CH platform on the PwD-informal caregiver dyad well-being, once validated, could be used as a future tool to conduct the same analyses with other CH technologies for this population.; International Registered Report Identifier (irrid): RR2-10.2196/13280. 

Access source material through DOI

Review and Selection of Online Resources for Carers of Frail Adults or Older People in Five European Countries: Mixed-Methods Study

Background: Informal carers have a crucial role in the care of older people, but they are at risk of social isolation and psychological exhaustion. Web-based services like apps and websites are increasingly used to support informal carers in addressing some of their needs and tasks, such as health monitoring of their loved ones, information and communication, and stress management. Despite the growing number of available solutions, the lack of knowledge or skills of carers about the solutions often prevent their usage.; Objective: This study aimed to review and select apps and websites offering functionalities useful for informal carers of frail adults or older people in 5 European countries (Cyprus, Greece, Italy, Portugal, and Sweden).; Methods: A systematic online search was conducted from January 2017 to mid-March 2017 using selected keywords, followed by an assessment based on a set of commonly agreed criteria and standardized tools. Selected resources were rated and classified in terms of scope. Focus groups with informal carers were conducted to validate the list and the classification of resources. The activities were conducted in parallel in the participating countries using common protocols and guidelines, a standardization process, and scheduled group discussions.; Results: From a total of 406 eligible resources retrieved, 138 apps and 86 websites met the inclusion criteria. Half of the selected resources (109/224, 48.7%) were disease-specific, and the remaining resources included information and utilities on a variety of themes. Only 38 resources (38/224, 17.0%) were devoted specifically to carers, addressing the management of health disturbances and diseases of the care recipient and focusing primarily on neurodegenerative diseases. Focus groups with the carers showed that almost all participants had no previous knowledge of any resource specifically targeting carers, even if interest was expressed towards carer-focused resources. The main barriers for using the resources were low digital skills of the carers and reliability of health-related apps and websites. Results of the focus groups led to a new taxonomy of the resources, comprising 4 categories: carer's wellbeing, managing health and diseases of the care recipient, useful contacts, and technologies for eldercare.; Conclusions: The review process allowed the identification of online resources of good quality. However, these resources are still scarce due to a lack of reliability and usability that prevent users from properly benefiting from most of the resources. The involvement of end users provided added value to the resource classification and highlighted the gap between the potential benefits from using information and communication technologies and the real use of online resources by carers.

Access source material through DOI

Quality of Care Perceived by Older Patients and Caregivers in Integrated Care Pathways With Interviewing Assistance From a Social Robot: Noninferiority Randomized Controlled Trial

Background: Society is facing a global shortage of 17 million health care workers, along with increasing health care demands from a growing number of older adults. Social robots are being considered as solutions to part of this problem.Objective: Our objective is to evaluate the quality of care perceived by patients and caregivers for an integrated care pathway in an outpatient clinic using a social robot for patient-reported outcome measure (PROM) interviews versus the currently used professional interviews. Methods: A multicenter, two-parallel-group, nonblinded, randomized controlled trial was used to test for noninferiority of the quality of care delivered through robot-assisted care. The randomization was performed using a computer-generated table. The setting consisted of two outpatient clinics, and the study took place from July to December 2019. Of 419 patients who visited the participating outpatient clinics, 110 older patients met the criteria for recruitment. Inclusion criteria were the ability to speak and read Dutch and being assisted by a participating health care professional. Exclusion criteria were serious hearing or vision problems, serious cognitive problems, and paranoia or similar psychiatric problems. The intervention consisted of a social robot conducting a 36-item PROM. As the main outcome measure, the customized Consumer Quality Index (CQI) was used, as reported by patients and caregivers for the outpatient pathway of care. Results: In total, 75 intermediately frail older patients were included in the study, randomly assigned to the intervention and control groups, and processed: 36 female (48%) and 39 male (52%); mean age 77.4 years (SD 7.3), range 60-91 years. There was no significant difference in the total patient CQI scores between the patients included in the robot-assisted care pathway (mean 9.27, SD 0.65, n=37) and those in the control group (mean 9.00, SD 0.70, n=38): P=.08, 95% CI -0.04 to 0.58. There was no significant difference in the total CQI scores between caregivers in the intervention group (mean 9.21, SD 0.76, n=30) and those in the control group (mean 9.09, SD 0.60, n=35): P=.47, 95% CI -0.21 to 0.46. No harm or unintended effects occurred. Conclusions: Geriatric patients and their informal caregivers valued robot-assisted and nonrobot-assisted care pathways equally.Trial Registration: ClinicalTrials.gov NCT03857789; https://clinicaltrials.gov/ct2/show/NCT03857789.

Access source material through DOI

Pilot Study of a Video-Based Educational Program to Reduce Family Violence for Parents of Adult Children with Schizophrenia

This pilot study evaluated a video-based educational program for improving communication skills and reducing family violence between parents and their adult children with schizophrenia. We used a one group pretest-posttest design. The program included a main 90-min video and six stories, each 20–30 min long. We made assessments at baseline and program completion (three months after baseline). Sixty-six parent participants completed the intervention. The average frequency of acts of family violence significantly decreased from 11.4 (SD = 26.2) at pretest to 5.1 (SD = 13.2) at posttest (p = 0.016). Our findings showed significant improvements regarding expressed emotion, psychological distress, family empowerment, and hope, demonstrating preliminary positive results for this video-based educational program. The program was shown to be feasible for support/educational groups of family members of adults with mental disorders to deliver and may also be useful for practitioner-led educational groups for families in public health centers or medical settings to offer. 

Access source material through DOI

Pilot study of a telehealth perioperative physical activity intervention for older adults with cancer and their caregivers

Background: Older adults undergoing cancer surgery are at greater risk for poor postoperative outcomes. Caregivers also endure significant burden. Participation in perioperative physical activity may improve physical functioning and enhance overall well-being for both patients and caregivers. In this study, we assessed the feasibility of a personalized telehealth intervention to enhance physical activity for older (≥ 65 years) gastrointestinal (GI) and lung cancer surgery patients/caregivers. Methods: Participants completed four telehealth sessions with physical therapy/occupational therapy (PT/OT) before surgery and up to 2 weeks post-discharge. Outcomes included preop geriatric assessment, functional measures, and validated measures for symptoms and psychological distress. Pre/post-intervention trends/trajectories for outcomes were explored. Results: Thirty-four patient/caregiver dyads (16, GI; 18, lung) were included. Accrual rate was 76% over 8 months; retention rate was 88% over 2 months. Median for postop of a 6-min walk test, timed up and go, and short physical performance battery test scores improved from baseline to postop. Participant satisfaction scores were high. Conclusion: Our conceptually based, personalized, multimodal, telehealth perioperative physical activity intervention for older patient/caregiver dyads is feasible and acceptable. It offers an opportunity to improve postoperative outcomes by promoting functional recovery through telehealth, behavior change, and self-monitoring approaches. Trial Registration: ClinicalTrials.gov Identifier: NCT03267524.

Access source material through DOI

Perspectives on Components of an Online Training and Support Program for Dementia Family Caregivers in India: A Focus Group Study

There is a considerable need for support interventions for caregivers of people with dementia in developing countries, such as India. The purpose of the study was to identify the components and understand the acceptability of an online training and support program for dementia caregivers in India. Three focus group discussions were carried out with dementia caregivers (2) and health professionals (1) to understand the requirements of an online training and support program from their perspective. The commonly recurring themes were identified and defined using thematic content analysis. The expectations from an online training and support program were wide-ranging from information about identification and management of dementia to support caregiver well-being. Use of simple language, cultural relevance, and an interactive design were suggestions to facilitate the use of the support program. Lack of time, difficulty in accessing the internet, lack of awareness about the portal, difficulty in reaching the rural population were anticipated as challenges in using the program. The study highlights the requisite components of a first of its kind online training and support program in India by integrating the experiences, motivations, challenges, and expectations of caregivers and professionals involved in dementia care. The focus group discussions in the current study provide a road map for the development of an online caregiver training and support program underlying the perspectives of the stakeholders for the consolidation of an effective dementia care program for lower resourced settings. 

Access source material through DOI

A Personalized Voice-Based Diet Assistant for Caregivers of Alzheimer Disease and Related Dementias: System Development and Validation

Background: The world's aging population is increasing, with an expected increase in the prevalence of Alzheimer disease and related dementias (ADRD). Proper nutrition and good eating behavior show promise for preventing and slowing the progression of ADRD and consequently improving patients with ADRD's health status and quality of life. Most ADRD care is provided by informal caregivers, so assisting caregivers to manage patients with ADRD's diet is important. Objective: This study aims to design, develop, and test an artificial intelligence-powered voice assistant to help informal caregivers manage the daily diet of patients with ADRD and learn food and nutrition-related knowledge. Methods: The voice assistant is being implemented in several steps: construction of a comprehensive knowledge base with ontologies that define ADRD diet care and user profiles, and is extended with external knowledge graphs; management of conversation between users and the voice assistant; personalized ADRD diet services provided through a semantics-based knowledge graph search and reasoning engine; and system evaluation in use cases with additional qualitative evaluations. Results: A prototype voice assistant was evaluated in the lab using various use cases. Preliminary qualitative test results demonstrate reasonable rates of dialogue success and recommendation correctness. Conclusions: The voice assistant provides a natural, interactive interface for users, and it does not require the user to have a technical background, which may facilitate senior caregivers' use in their daily care tasks. This study suggests the feasibility of using the intelligent voice assistant to help caregivers manage patients with ADRD's diet.

Access source material through DOI

Perceived Need and Acceptability of an App to Support Activities of Daily Living in People With Cognitive Impairment and Their Carers: Pilot Survey Study

Background: Modern technologies, including smartphone apps, have the potential to assist people with cognitive impairment with activities of daily living, allowing them to maintain their independence and reduce carer burden. However, such tools have seen a slow rate of uptake in this population, and data on the acceptability of assistive technologies in this population are limited.; Objective: This pilot study included older adults with cognitive impairment and their carers, and explored the perceived needs for and acceptability of an app that was designed to be a simple assistive tool for activities of daily living. In particular, this study aimed to assess the acceptability of common app functions such as communication, reminder, navigation, and emergency tools in this population, and to compare patients' and carers' responses to them.; Methods: A total of 24 German participants with mild cognitive impairment or dementia and their family carers separately completed two short questionnaires. The first questionnaire asked the participants with cognitive impairment and their carers to self-rate the patients' cognitive impairment levels and affinity to technology. Following a demonstration of the app, participants rated the usability and acceptability of the app and its functions in a second questionnaire.; Results: Participants rated themselves as much less cognitively impaired than their carers did (P=.01), and insight into the level of support they received was low. The majority of the participants (19/24, 79%) and their carers (20/24, 83%) had low affinity to technology, and even after the demonstration, 63% (15/24) of the participants had low interest in using the app. A breakdown of acceptability responses by app function revealed that participants were more amenable to the reminder function, the emergency feature, and a wearable form of the app. Features that centered around carers monitoring participants' movements were reported to be less acceptable to participants.; Conclusions: This study highlights the importance of focusing on acceptability and the consumer's perceptions in the development of assistive technology for older adults with cognitive impairment. Participants showed an aversion to functions they perceived as eroding their independence, while functions that more closely aligned with independence and autonomy were perceived as more acceptable.

Access source material through DOI

Older Adult Caregivers' Experiences in an Online, Interactive Mindfulness Intervention

Background.: While today's older adults experience longevity, they often manage several chronic conditions and increasingly serve as informal caregivers for aging parents, children with life-long disabilities, and spouses. Older adult caregivers managing personal chronic illness often experience significant psychosocial hardships. Objective.: The primary purpose of this study was to explore the experiences of older adult caregivers in an online, interactive mindfulness intervention. Methods.: Self-reported older caregivers who participated in an online-based mindfulness program (n = 20) were recruited for semi-structured interviews. Participants were asked to provide feedback about any previous experience with mindfulness and/or meditation, hopes or goals held prior to the start of the program, desired expectations, motivation for joining, impressions of sessions, most beneficial topics, potential application of content, and any perceived effects. Participants' responses were analyzed using qualitative content analysis. Results.: Five themes emerged from the analysis: Managing the Comprehensive Effects of Caregiving, Openness to Meditation and Mindfulness, Course Engagement and Incremental Growth, Building Rapport through Shared Experiences, and Ongoing Application and Opportunities for Refinement. Participants reported both short-term post-exercise benefits such as increased calm, relaxation, and stress relief, as well as long-term positive outcomes. Notably, participants found the program's unique interactive feature to be particularly beneficial as a form of perceived social support. Conclusions.: Caregivers for older adults may derive benefit and potentially experience reduced subjective caregiver burden as a result of participating in a Mindfulness-Based Stress Reduction (MBSR) program, particularly when the program is augmented with a self-compassion approach and perceived social support.

Access source material through DOI

Mobile applications for managing symptoms of patients with cancer at home: A scoping review

Background Education plays an important role in cancer symptom management for patients and their families. With the advancement of information and communication technology, there may be additional evidence for the use of mobile apps to support patient and family education. Purpose The purpose of this review was to explore and synthesize scientific literature about cancer symptom management mobile apps that can be used by patients and their families. Methods This review adopted a scoping review study framework, using electronic databases including EBSCO, PubMed, ProQuest, Science Direct, and Google Scholar using search keywords: ‘caregiver family’, ‘mobile application’, ‘symptom management’ and ‘palliative care’. Of a total of 2633 papers found, 11 papers were selected. Findings Assessment tools are a major component of mobile apps in reporting and assessing symptoms to provide appropriate education. The information in mobile apps is delivered through various mediums that include modules, videos, avatars and cultural integration features. Conclusion Mobile apps can improve provision of palliative care in several ways, most importantly by increasing the knowledge of the patient's family to manage cancer symptoms. Nurses are expected to play an active role in finding and utilizing appropriate mobile apps to assist families in managing a patient's symptoms at home.

Access source material through DOI

Long-Term Socioeconomic Impact of Informal Care Provided to Patients with Pacemakers: Remote vs. Conventional Monitoring

The impact of informal care immediately after pacemaker (PM) implantation has been well established; however, not much is known about its long-term effects. The present study compared personal characteristics, associated problems, workloads, time, and costs related to informal care provided to patients with PM under remote monitoring (RM) vs. conventional monitoring (CM) in the hospital, five years after implantation. The PONIENTE study was a controlled, non-randomized or masked clinical trial conducted with information obtained from the perspective of informal caregivers. Data were collected at 12 and 60 months after PM implantation. The patients in the study were assigned to two different groups: remote monitoring (RM) and conventional monitoring (CM). The "Disability, personal autonomy, and dependency situations survey" (EDAD) was administered to collect information on sociodemographic characteristics, time, care difficulties, health status, professional aspects, and impact on economic, family, or leisure aspects of the main caregivers providing care to patients with pacemakers. After five years, 55 patients completed the study (RM = 21; CM = 34). The average age was 63.14 years (SD = 14.90), 96% of them were women, and the most predominant marital status was married (72%). Informal caregivers lived in the homes of the patients in 70% of cases, and 88% indicated that they had to provide care six to seven days a week. The average cost per patient during the monitoring period studied was 13.17% lower in the RM group than in the CM group, and these differences were not statistically significant ( p = 0.35). This study found similar results in the two groups under study with respect to sociodemographic characteristics, workload, time, and problems associated with health, leisure and family members. The costs associated with care were higher in the CM group; however, these differences were not statistically significant.

Access source material through DOI

The key aspects of online support that older family carers of people with dementia want at the end of life: A qualitative study

Objectives: Family carers towards the end of life face a range of difficult challenges and have high levels of support needs. The aim of this study was to explore the challenges carers of people with dementia face towards the end of life and the support needs which could be addressed by online support. Methods: Qualitative study using semi-structured interviews with 23 current and former family carers of people with dementia in England in 2016–2017. Interviews were analysed using thematic analysis methods. Results: Most carers interviewed had positive views of receiving support online via a website. Participants described a series of challenges they felt online support could address and help support them with when caring for someone with dementia towards the end of life: 1) feeling prepared and equipped; 2) feeling connected and supported; 3) balancing their own needs with those of the individual; and 4) maintaining control and being the co-ordinator of care. However many valued a mix of technology and human interaction in receiving support. Conclusions: This study has identified the key challenges for carers at the end of life that could be met by online support. Online support offers a source of support to supplement face-to-face contact, as many carers still wish to talk to someone in person. This could help alleviate pressures which health and social care systems currently face.

Access source material through DOI

Internet-Based Supportive Interventions for Family Caregivers of People With Dementia: Systematic Review and Meta-Analysis

Background: Caring for people with dementia is perceived as one of the most stressful and difficult forms of caring. Family caregivers always experience high levels of psychological burden and physical strain, so effective and practical support is essential. Internet-based supportive interventions can provide convenient and efficient support and education to potentially reduce the physical and psychological burden associated with providing care. Objective: This review aimed to (1) assess the efficacy of internet-based supportive interventions in ameliorating health outcomes for family caregivers of people with dementia, and (2) evaluate the potential effects of internet-based supportive intervention access by caregivers on their care recipients. Methods: An electronic literature search of the PubMed, EMBASE, Web of Science, CINAHL, Cochrane Library, and PsycINFO databases was conducted up to January 2020. Two reviewers (ML and YZ) worked independently to identify randomized controlled trials (RCTs) that met the inclusion criteria and independently extracted data. The quality of the included RCTs was evaluated using the approach recommended by the Cochrane Handbook for Systematic Reviews of Interventions. Standardized mean differences (SMDs) with 95% CIs were applied to calculate the pooled effect sizes. Results: In total, 17 RCTs met the eligibility criteria and were included in this systematic review. The meta-analysis showed that internet-based supportive interventions significantly ameliorated depressive symptoms (SMD=-0.21; 95% CI -0.31 to -0.10; P<.001), perceived stress (SMD=-0.40; 95% CI -0.55 to -0.24; P<.001), anxiety (SMD=-0.33; 95% CI -0.51 to -0.16; P<.001), and self-efficacy (SMD=0.19; 95% CI 0.05-0.33; P=.007) in dementia caregivers. No significant improvements were found in caregiver burden, coping competence, caregiver reactions to behavioral symptoms, or quality of life. Six studies assessed the unintended effects of internet-based supportive intervention access by caregivers on their care recipients. The results showed that internet-based supportive interventions had potential benefits on the quality of life and neuropsychiatric symptoms in care recipients. Conclusions: Internet-based supportive interventions are generally effective at ameliorating depressive symptoms, perceived stress, anxiety, and self-efficacy in dementia caregivers and have potential benefits on care recipients. Future studies are encouraged to adopt personalized internet-based supportive interventions to improve the health of family caregivers and their care recipients. Trial Registration: PROSPERO CRD42020162434; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=162434.

Access source material through DOI

Implementation of e-mental health interventions for informal caregivers of adults with chronic diseases: a protocol for a mixed-methods systematic review with a qualitative comparative analysis

Introduction: Informal caregivers provide the majority of care to individuals with chronic health conditions, benefiting the care recipient and reducing use of formal care services. However, providing informal care negatively impacts the mental health of many caregivers. E-mental health interventions have emerged as a way to provide accessible mental healthcare to caregivers. Much attention has been given to reviewing the effectiveness and efficacy of such interventions, however, factors related to implementation have received less consideration. Therefore, this mixed-methods systematic review will aim to examine factors associated with the effectiveness and implementation of e-mental health interventions for caregivers.; Methods and Analysis: Eligible studies published since 1 January 2007 will be searched for in several electronic databases (CINAHL Plus with Full Text, the Cochrane Library, EMBASE, PsycINFO, PubMed and Web of Science), clinical trial registries and OpenGrey, with all screening steps conducted by two independent reviewers. Studies will be included if they focus on the implementation or effectiveness of e-mental health interventions designed for informal adult caregivers of adults with cancer, heart disease, stroke, diabetes, dementia or chronic obstructive pulmonary disease. Pragmatic randomised controlled trials quantitatively reporting on caregiver anxiety, depression, psychological distress or stress will be used for a qualitative comparative analysis to identify combinations of conditions that result in effective interventions. Qualitative and quantitative data on implementation of e-mental health interventions for caregivers will be integrated in a thematic synthesis to identify barriers and facilitators to implementation. These results will inform future development and implementation planning of e-mental health interventions for caregivers.; Ethics and Dissemination: Ethical approval is not required for this study as no primary data will be collected. Results will be disseminated in the form of a scientific publication and presentations at academic conferences and plain language summaries for various stakeholders.; Prospero Registration Number: CRD42020155727. 

Access source material through DOI

The impact of assistive technology on burden and psychological well-being in informal caregivers of people with dementia (ATTILA Study)

Introduction: Assistive technology and telecare (ATT) may alleviate psychological burden in informal caregivers of people with dementia. This study assessed the impact of ATT on informal caregivers' burden and psychological well-being.; Methods: Individuals with dementia and their informal caregivers were recruited to a randomized-controlled trial assessing effectiveness of ATT. Caregivers were allocated to two groups according to their cared-for person's randomization to a full or basic package of ATT and were assessed on caregiver burden, state anxiety, and depression. Caregivers' data from three assessments over 6 months of the trial were analyzed.; Results: No significant between- or within-group differences at any time point on caregivers' burden, anxiety, and depression levels were found.; Discussion: Full ATT for people with dementia did not impact caregivers' psychological outcomes compared to basic ATT. The length of follow up was restricted to 6 months. 

Access source material through DOI

Feasibility-Usability Study of a Tablet App Adapted Specifically for Persons with Cognitive Impairment-SMART4MD (Support Monitoring and Reminder Technology for Mild Dementia)

Population ageing within Europe has major social and economic consequences. One of the most devastating conditions that predominantly affects older people is dementia. The SMART4MD (Support Monitoring and Reminder Technology for Mild Dementia) project aims to develop and test a health application specifically designed for people with mild dementia. The aim of this feasibility study was to evaluate the design of the SMART4MD protocol, including recruitment, screening, baseline examination and data management, and to test the SMART4MD application for functionality and usability before utilization in a full-scale study. The feasibility study tested the protocol and the app in Spain and Sweden. A total of nineteen persons with cognitive impairment, and their informal caregivers, individually performed a task-based usability test of the SMART4MD app model in a clinical environment, followed by four-week testing of the app in the home environment. By employing a user-centered design approach, the SMART4MD application proved to be an adequate and feasible interface for an eHealth intervention. In the final usability test, a score of 81% satisfied users was obtained. The possibility to test the application in all the procedures included in the study generated important information on how to present the technology to the users and how to improve these procedures.

Access source material through DOI

Feasibility of ActivABLES to promote home-based exercise and physical activity of community-dwelling stroke survivors with support from caregivers: A mixed methods study

Background: Technical applications can promote home-based exercise and physical activity of community-dwelling stroke survivors. Caregivers are often able and willing to assist with home-based exercise and physical activity but lack the knowledge and resources to do so. ActivABLES was established to promote home-based exercise and physical activity among community-dwelling stroke survivors, with support from their caregivers. The aim of our study is to investigate the feasibility of ActivABLES in terms of acceptability, demand, implementation and practicality. Methods: A convergent design of mixed methods research in which quantitative results were combined with personal experiences of a four-week use of ActivABLES by community-dwelling stroke survivors with support from their caregivers. Data collection before, during and after the four-week period included the Berg Balance Scale (BBS), Activities-Specific Balance Confidence Scale (ABC), Timed-Up-and-Go (TUG) and Five Times Sit to Stand Test (5xSST) and data from motion detectors. Semi-structured interviews were conducted with stroke survivors and caregivers after the four-week period. Descriptive statistics were used for quantitative data. Qualitative data was analysed with direct content analysis. Themes were identified related to the domains of feasibility: acceptability, demand, implementation and practicality. Data was integrated by examining any (dis)congruence in the quantitative and qualitative findings. Results: Ten stroke survivors aged 55-79 years participated with their informal caregivers. Functional improvements were shown in BBS (+ 2.5), ABC (+ 0.9), TUG (- 4.2) and 5xSST (- 2.7). More physical activity was detected with motion detectors (stand up/sit down + 2, number of steps + 227, standing + 0.3 h, hours sitting/lying - 0.3 h). The qualitative interviews identified themes for each feasibility domain: (i) acceptability: appreciation, functional improvements, self-initiated activities and expressed potential for future stroke survivors; (2) demand: reported use, interest in further use and need for follow-up; (3) implementation: importance of feedback, variety of exercises and progression of exercises and (4) practicality: need for support and technical problems. The quantitative and qualitative findings converged well with each other and supported the feasibility of ActivABLES. Conclusions: ActivABLES is feasible and can be a good asset for stroke survivors with slight or moderate disability to use in their homes. Further studies are needed with larger samples.

Access source material through DOI

The Feasibility and Utility of a Personal Health Record for Persons With Dementia and Their Family Caregivers for Web-Based Care Coordination: Mixed Methods Study

Background: Managing the complex and long-term care needs of persons living with Alzheimer disease and related dementias (ADRD) can adversely impact the health of informal caregivers and their care recipients. Web-based personal health records (PHRs) are one way to potentially alleviate a caregiver's burden by simplifying ADRD health care management.; Objective: This study aimed to evaluate Personal Health Record for Persons with Dementia and Their Family Caregivers (PHR-ADRD), a free web-based information exchange tool, using a multiphase mixed methods approach.; Methods: Dementia caregivers (N=34) were surveyed for their well-being and perceptions of PHR-ADRD feasibility and utility at 6 and 12 months using close- and open-ended questions as well as a semistructured interview (n=8). Exploratory analyses compared participants' characteristics as well as PHR-ADRD use and experiences based on overall favorability status.; Results: Feasibility and utility scores decreased over time, but a subset of participants indicated that the system was helpful. Quantitative comparisons could not explain why some participants indicated favorable, neutral, or unfavorable views of the system overall or had not engaged with PHR-ADRD. Qualitative findings suggested that technology literacy and primary care provider buy-in were barriers. Both qualitative and qualitative findings indicated that time constraints to learn and use the system affected most participants.; Conclusions: Development and dissemination of PHRs for family caregivers of persons with ADRD should aim to make systems user-friendly for persons with limited time and technological literacy. Establishing health care provider buy-in may be essential to the future success of any PHR system. 

Access source material through DOI

The evidence supporting educational videos for patients and caregivers receiving hospice and palliative care: A systematic review

Objective: The purpose of this study is to explore the evidence surrounding educational videos for patients and family caregivers in hospice and palliative care. We ask three research questions: 1. What is the evidence for video interventions? 2. What is the quality of the evidence behind video interventions? 3. What are the outcomes of video interventions? Methods: The study is a systematic review, following Preferred Reporting Items for Systematic reviews and Meta-Analysis (PRISMA) guidelines. Researchers systematically searched five databases for experimental and observational studies on the evidence supporting video education for hospice and palliative care patients and caregivers, published in 1969-2019. Results: The review identified 31 relevant articles with moderate-high quality of evidence. Most studies were experimental (74 %), came from the United States (84 %) and had a mean sample size of 139 participants. Studies showed that video interventions positively affect preferences of care and advance care planning, provide emotional support, and serve as decision and information aids. Conclusion: A strong body of evidence has emerged for video education interventions in hospice and palliative care. Additional research assessing video interventions' impact on clinical outcomes is needed. Practice Implications: Videos are a promising tool for patient and family education in hospice and palliative care.

Access source material through DOI

Elements of Family, Social Relationships, and Caregiving in Palliative Care mHealth: A Scoping Review (GP781)

Objectives: • Identify research-based and commercial mobile applications currently available to support palliative and end of life care. • Evaluate the utility of current palliative care and end of life mobile applications for families and caregiving support among diverse populations.  Importance: Mobile health (mHealth) can increase access to and awareness of palliative and end of life (PCEOL) care among patients, families, and caregivers from diverse backgrounds.  Objective(s): The objective of this scoping review is to describe the inclusion and features for family, social relationships, and caregivers in PCEOL-specific mHealth.  Method(s): We conducted a systematic search of PCEOL mHealth that included: 1) research-based mobile applications (apps) from PubMed, PsycINFO, and Web of Science published between 1/1/10-3/31/19, and 2) commercially available apps for iPhone, Google Play, and Amazon Appstore in April 2019. Apps were included if they focused on at least one element of PCEOL and targeted adults with serious life-limiting illness and/or their family and caregivers. Two reviewers independently assessed abstracts, app titles, and descriptions against the inclusion and exclusion criteria.  Findings: Overall, 10 articles describing 9 individual research-based apps and 22 commercially available apps were identified (N=32). Apps targeted symptom management (74.2%) followed by decision support (19.4%) and bereavement or grief (16.1%). Commercially available apps were designed for both patients and family caregivers (n=9/22, 40.9%), while research apps were designed for patient use (n=8/9, 88.9%). Features allowing the patient to share app-generated materials, e.g., advanced care directives or legacy projects, via email or text were the most common patient-caregiver features (n=10/22, 45.5%). Only 2/32 (6.3%) of apps considered contextual factors such as marriage, social isolation, or socioeconomic status of the patient or family caregivers.  Conclusion(s): Results suggest there is an emerging presence of apps for patients and caregivers dealing with serious illness, yet there are many needs for developers and researchers to address.  Impact: Additional research is needed for apps that embrace a team approach to information sharing, target family and caregiver specific issues, promote access to palliative care, and comprehensively address palliative needs.

Access source material through DOI

Efficacy of a Smartphone App Intervention for Reducing Caregiver Stress: Randomized Controlled Trial

Background: Caregivers play a pivotal role in maintaining an economically viable health care system, yet they are characterized by low levels of psychological well-being and consistently report unmet needs for psychological support. Mobile app-based (mobile health [mHealth]) interventions present a novel approach to both reducing stress and improving well-being.; Objective: This study aims to evaluate the effectiveness of a self-guided mobile app-based psychological intervention for people providing care to family or friends with a physical or mental disability.; Methods: In a randomized, single-blind, controlled trial, 183 caregivers recruited through the web were randomly allocated to either an intervention (n=73) or active control (n=110) condition. The intervention app contained treatment modules combining daily self-monitoring with third-wave (mindfulness-based) cognitive-behavioral therapies, whereas the active control app contained only self-monitoring features. Both programs were completed over a 5-week period. It was hypothesized that intervention app exposure would be associated with decreases in depression, anxiety, and stress, and increases in well-being, self-esteem, optimism, primary and secondary control, and social support. Outcomes were assessed at baseline, postintervention, and 3-4 months postintervention. App quality was also assessed.; Results: In total, 25% (18/73) of the intervention participants were lost to follow-up at 3 months, and 30.9% (34/110) of the participants from the wait-list control group dropped out before the postintervention survey. The intervention group experienced reductions in stress (b=-2.07; P=.04) and depressive symptoms (b=-1.36; P=.05) from baseline to postintervention. These changes were further enhanced from postintervention to follow-up, with the intervention group continuing to report lower levels of depression (b=-1.82; P=.03) and higher levels of emotional well-being (b=6.13; P<.001), optimism (b=0.78; P=.007), self-esteem (b=-0.84; P=.005), support from family (b=2.15; P=.001), support from significant others (b=2.66; P<.001), and subjective well-being (b=4.82; P<.001). On average, participants completed 2.5 (SD 1.05) out of 5 treatment modules. The overall quality of the app was also rated highly, with a mean score of 3.94 out of a maximum score of 5 (SD 0.58).; Conclusions: This study demonstrates that mHealth psychological interventions are an effective treatment option for caregivers experiencing high levels of stress. Recommendations for improving mHealth interventions for caregivers include offering flexibility and customization in the treatment design.; Trial Registration: Australian New Zealand Clinical Trial Registry ACTRN12616000996460; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=371170. 

Access source material through DOI

Effects of Early Palliative Care for Family Caregivers of Persons with Advanced Heart Failure: The ENABLE CHF-PC Randomized Controlled Trial (CS201A)

Objectives: • Explain the experience and tasks undertaken by family caregivers of patients with advanced heart failure. • Summarize results and implications of the ENABLE CHF-PC trial for family caregivers.  Importance: Family caregivers (CGs) provide high levels of care to persons with advanced heart failure and are at high risk for distress and poor quality of life (QoL).  Objective(s): Determine the effect of a nurse-led palliative care telehealth intervention (ENABLE CHF-PC) on advanced heart failure CGs QoL and mood over 16 weeks.  Method(s): Intervention versus usual care single-blind randomized controlled trial (August 2016-October 2018; ClinicalTrials.gov: NCT02505425). Family caregivers of patients with NYHA Class III/IV heart failure were recruited from outpatient heart failure clinics at a large academic tertiary care medical center and a Veterans Affairs Medical Center. Intervention-group caregivers received four weekly psychosocial and problem-solving support telephonic sessions facilitated by a trained nurse coach plus monthly follow-up for 48 weeks. The primary outcomes were QoL (Bakas Caregiving Outcomes Scale [BCOS]), mood (Hospital Anxiety and Depression Scale [HADS]), and burden (Montgomery-Borgatta Caregiver Burden scale [MBCB]) over 16 weeks.  Results: Of 159 CGs randomized to ENABLE CHF-PC (n=83) or usual care (n=76), mean age was 57.9, 85.4% were female, 51.9% were African American, and 65.2% were the patient's spouse/partner. Over 16 weeks, the mean BCOS score improved 0.7 points (SE=1.7) in the intervention arm and 1.1 points (SE=1.6) in the usual care arm (difference, -0.4; 95% CI, -5.1-4.3; d=-0.03). No relevant between-group differences were observed for HADS-anxiety (d=-0.02), HADS-depression (d=0.03), and the MBCB scale (d range: -0.18-0.0). P-values for all outcomes were >.05.  Conclusion(s): This 2-site randomized controlled trial of the ENABLE CHF-PC intervention for family caregivers of advanced heart failure patients, over half of whom were African-Americans and most of whom were not distressed at baseline, did not demonstrate clinically improved QoL, mood, or burden compared to usual care over 16 weeks.  Impact: Future interventions should target distressed family caregivers and assess effects on patient outcomes.

Access source material through DOI

Effects of a Video-based Intervention on Caregiver Confidence for Managing Dementia Care Challenges: Findings from the FamTechCare Clinical Trial

The Supporting Family Caregivers with Technology trial tested the FamTechCare video support intervention against telephone support. Dementia caregivers' video-recorded challenging care encounters and an interdisciplinary team provided tailored feedback. This paper reports on the effects of the intervention on caregiver confidence in managing priority challenges, a secondary outcome of this non-blinded parallel randomized controlled trial. Caregiver/person living with dementia dyads were randomized to the experimental FamTechCare video support (n = 43) or attention control telephone support (n = 41) groups. Caregivers providing in-home care to a person living with mild or more severe dementia were eligible. Caregivers identified three priority challenges using the Caregiver Target Problems Questionnaire and rated the frequency and severity of each challenge and their confidence managing the challenge at baseline and 3-months. Challenges were classified using the FamTechCare Technology-supported Dementia Care Typology. Effects on confidence were compared between groups using the Wilcoxon rank-sum test and within groups using the Wilcoxon signed-rank test. Caregiver priority challenges included managing dementia behaviors, understanding disease expectations, and performing activity of daily living care. Improvements were observed across the three categories in both groups; however, not all changes were statistically significant. No significant differences were identified between groups. Caregivers in the FamTechCare group reported benefit across all priority challenges including managing dementia behaviors, understanding disease expectations, and performing activity of daily living care. Innovative technology provides new opportunities to support family caregivers in dementia home care. Video-recording can be used to enhance support for family caregivers facing care challenges.

Access source material through DOI

The effect of a comprehensive mobile application program (CMAP) for family caregivers of home‐dwelling patients with dementia: A preliminary research

Aim: The purpose of this study was to evaluate the effect of a comprehensive mobile application program in managing behavior and psychological symptoms of home‐dwelling patients with dementia in South Korea. Methods: A nonequivalent control group pretest‐posttest design was conducted. A total of 26 family caregivers participated in this study. The application program consists of understanding of dementia, interventions, communication skills, coping methods, and bulletin boards. Data collection was performed from July 9, 2018, to October 4, 2018. Family caregivers' fatigue, sleep, and burden and patients with behavioral and psychological symptoms of dementia were measured. For data analysis, descriptive statistics, independent t tests, Mann–Whitney U test, repeated measures analysis of variance, and Friedman test were used. Results: The application program offered environmental management in an intervention using communication skills and coping methods, depending on the behavioral and psychological symptom type. The results showed significant differences between the two groups in family caregivers' fatigue (F = 11.24, p =.003) and burden (χ2 = 10.55, p =.005). Conclusion: The findings showed the application program improved family caregivers' fatigue and burden. It also suggested there is a need to develop a wandering persons location program to improve family caregivers' stress and patients' behavioral problems in future studies.

Access source material through DOI

Evaluation of 1-Year in-Home Monitoring Technology by Home-Dwelling Older Adults, Family Caregivers, and Nurses

Introduction: Population aging is increasing the needs and costs of healthcare. Both frailty and the chronic diseases affecting older people reduce their ability to live independently. However, most older people prefer to age in their own homes. New development of in-home monitoring can play a role in staying independent, active, and healthy for older people. This 12-month observational study aimed to evaluate a new in-home monitoring system among home-dwelling older adults (OA), their family caregivers (FC), and nurses for the support of home care. Methods: The in-home monitoring system evaluated in this study continuously monitored OA's daily activities (e.g., mobility, sleep habits, fridge visits, door events) by ambient sensor system (DomoCare (R)) and health-related events by wearable sensors (Activity tracker, ECG). In the case of deviations in daily activities, alerts were transmitted to nurses via email. Using specific questionnaires, the opinions of 13 OA, 13 FC, and 20 nurses were collected at the end of 12-months follow-up focusing on user experience and the impact of in-home monitoring on home care services. Results: The majority of OA, FC, and nurses considered that in-home sensors can help with staying at home, improving home care and quality of life, preventing domestic accidents, and reducing family stress. The opinion tended to be more frequently favorable toward ambient sensors (76%; 95% CI: 61-87%) than toward wearable sensors (Activity tracker: 65%; 95% CI: 50-79%); ECG: 60%; 95% CI: 45-75%). On average, OA (74%; 95% CI: 46-95%) and FC (70%; 95% CI: 39-91%) tended to be more enthusiastic than nurses (60%; 95% CI: 36-81%). Some barriers reported by nurses were a fear of weakening of the relationship with OA and lack of time. Discussion/Conclusion: Overall, the opinions of OA, FC, and nurses were positively related to in-home sensors, with nurses being less enthusiastic about their use in clinical practice.

Access source material through DOI

Development and Field Testing of a Long-Term Care Decision Aid Website for Older Adults: Engaging Patients and Caregivers in User-Centered Design

Background and Objectives Decisions about long-term care and financing can be difficult to comprehend, consider, and communicate. In a previous needs assessment, families in rural areas requested a patient-facing website; however, questions arose about the acceptability of an online tool for older adults. This study engaged older adults and family caregivers in (a) designing and refining an interactive, tailored decision aid website, and (b) field testing its utility, feasibility, and acceptability. Research Design and Methods Based on formative work, the research team engaged families in designing and iteratively revising paper drafts, then programmed a tailored website. The field test used the ThinkAloud approach and pre-/postquestionnaires to assess participants' knowledge, decisional conflict, usage, and acceptability ratings. Results Forty-five older adults, family members, and stakeholders codesigned and tested the decision aid, yielding four decision-making steps: Get the Facts , What Matters Most, Consider Your Resources, and Make an Action Plan. User-based design and iterative storyboarding enhanced the content, personal decision-making activities, and user-generated resources. Field-testing participants scored 83.3% correct on knowledge items and reported moderate/low decisional conflict. All (100%) were able to use the website, spent an average of 26.3 min, and provided an average 87.5% acceptability rating. Discussion and Implications A decision aid website can educate and support older adults and their family members in beginning a long-term care plan. Codesign and in-depth interviews improved usability, and lessons learned may guide the development of other aging decision aid websites. 

Access source material through DOI

Co‐designing technology with people with dementia and their carers: Exploring user perspectives when co‐creating a mobile health application

Aims To explore the perspectives of those involved in co‐designing a mobile application with people with dementia and their carers. Background People with dementia suffer physical and psychological problems as their illness progresses and require a range of health and social care services to meet their needs. Mobile applications are being developed to support individuals to manage long‐term conditions, but patients and carers are not always involved in designing this technology, which can lead to poor quality health apps. A digital initiative was launched to involve people with dementia and their carers in creating a mobile app that would support communication and enable them to share memories together. Design An exploratory, descriptive approach was used. Methods In‐depth interviews with people with dementia, their carers, and others involved in co‐creating a mobile health application were conducted. Data analysis was undertaken using the framework approach. Results The views of people with dementia, their carers, and project staff were similar regarding the complexity of the co‐design process, and the value the mobile app had for people with dementia and their families. Being involved in co‐production seemed to have numerous benefits for people with dementia and their carers as they gained new knowledge and skills, friendships, and a sense of achievement in creating a unique app that would benefit many people. The app also appeared useful in stimulating memory and cognitive function, aiding communication, and providing a sense of normalcy for people living with dementia and their carers. Conclusion Mobile health applications can facilitate interaction between people with dementia and their carer network that could improve their quality of life. Further research on which co‐design process is best suited to people with dementia and whether technology created via this participatory method is more effective or not in improving health outcomes is required.Implications for practiceNurses should have knowledge of and education about technology and how it can promote health and wellbeing of persons with dementia. Nurses who care for people with dementia and their families should support them in taking part in or leading the design of technologies that meet their needs. Participatory design methods should be taught in nursing education so the profession can provide guidance to patients and their families on co‐creating health products and services

Access source material through DOI

Challenges and Recommendations for the Deployment of Information and Communication Technology Solutions for Informal Caregivers: Scoping Review

Background: Information and communication technology (ICT)-based solutions have the potential to support informal caregivers in home care delivery. However, there are many challenges to the deployment of these solutions.; Objective: The aim of this study was to review literature to explore the challenges of the deployment of ICT-based support solutions for informal caregivers and provide relevant recommendations on how to overcome these challenges.; Methods: A scoping review methodology was used following the Arksey and O'Malley methodological framework to map the relevant literature. A search was conducted using PubMed, IEEE library, and Scopus. Publication screening and scrutiny were conducted following inclusion criteria based on inductive thematic analysis to gain insight into patterns of challenges rising from deploying ICT-based support solutions for informal caregivers. The analysis took place through an iterative process of combining, categorizing, summarizing, and comparing information across studies. Through this iterative process, relevant information was identified and coded under emergent broader themes as they pertain to each of the research questions.; Results: The analysis identified 18 common challenges using a coding scheme grouping them under four thematic categories: technology-related, organizational, socioeconomic, and ethical challenges. These range from specific challenges related to the technological component of the ICT-based service such as design and usability of technology, to organizational challenges such as fragmentation of support solutions to socioeconomic challenges such as funding of technology and sustainability of solutions to ethical challenges around autonomy and privacy of data. For each identified challenge, recommendations were created on how to overcome it. The recommendations from this study can provide guidance for the deployment of ICT-based support solutions for informal caregivers.; Conclusions: Despite a growing interest in the potential offered by ICT solutions for informal caregiving, diverse and overlapping challenges to their deployment still remain. Designers for ICTs for informal caregivers should follow participatory design and involve older informal caregivers in the design process as much as possible. A collaboration between designers and academic researchers is also needed to ensure ICT solutions are designed with the current empirical evidence in mind. Taking actions to build the digital skills of informal caregivers early in the caregiving process is crucial for optimal use of available ICT solutions. Moreover, the lack of awareness of the potential added-value and trust toward ICT-based support solutions requires strategies to raise awareness among all stakeholders-including policy makers, health care professionals, informal caregivers, and care recipients-about support opportunities offered by ICT. On the macro-level, policies to fund ICT solutions that have been shown to be effective at supporting and improving informal caregiver health outcomes via subsidies or other incentives should be considered. (©Alhassan Yosri Ibrahim Hassan. Originally published in JMIR Aging (http://aging.jmir.org), 29.07.2020.)

Access source material through DOI

Care of family caregivers of persons with dementia (CaFCa) through a tailor-made mobile app: study protocol of a complex intervention study

Background: Globally, family members account for the main source of caregiving of persons with dementia living at home. Providing care to family members with dementia often has negative health consequences for caregivers such as stress, depression and low quality of life. Yet, formal support for family caregivers (FCs) is limited. Telehealth technology has the potential to provide health care and social support to FCs. This study aims to assess the effectiveness of providing support by healthcare professionals (HPs) through a mobile app in reducing stress, depressive symptoms and loneliness, and improving mental health and quality of life of FCs of persons with dementia. Methods: Using a pragmatic intervention design, this study will use pre- and post-intervention assessment to evaluate the effectiveness of the proposed intervention in a sample of 78 FCs of persons with dementia (PWD). The intervention will be implemented by approximately 5 HPs specialized in dementia care based in the municipalities in Sweden. The main thrust of the intervention is to provide professional support, with help of an interactive mobile app, to family members in their caregiving role for PWDs. Qualitative interviews with HPs and FCs form the groundwork of the development of the mobile app. By using the app on smart phone or tablet, the FC, in groups of 8-10, will communicate with peers and a HP exchanging ideas on how to deal with PWD's behavioral and cognitive changes and get support. They will also be able to discuss stressful events and access mindfulness exercises focused on themselves. Quantitative data will be collected before and at three time points after the 8-week intervention to assess changes in the health outcomes of the FCs. In-depth interviews will be conducted after the intervention to capture the experiences of FCs and HPs regarding the ease of use and acceptability of the app.Discussion: This tailor-made mobile app has the high potential to be a practical platform for supporting FCs to alleviate stress and improve mental health irrespective of distance to the nearest health care or social service center.Trial Registration: ISRCTN, ISRCTN46137262 . Registered 10 October 2019.

Access source material through DOI

Attitudes of Professional Caregivers and Family Members Regarding the Use of Monitoring Devices to Improve Assessments of Pain and Discomfort During Continuous Sedation Until Death

Context: Assessing consciousness and pain during continuous sedation until death (CSD) by behavior-based observational scales alone has recently been put into question. Instead, the use of monitoring technology has been suggested to make more objective and reliable assessments. Insights into which factors influence attitudes toward using these monitoring devices in a context of CSD is a first step in formulating recommendations to inform future practice. Objectives: The aim of this study was to find out what influences professional caregivers' and family members' (FMs) attitudes regarding the use of monitors during CSD. Methods: We conducted semistructured face-to-face interviews with 20 professional caregivers and 15 FMs, who cared for a patient or had an FM, respectively, who took part in a study using monitoring devices. Recruitment took place in an academic hospital, a locoregional hospital, and two nursing homes, all located in Belgium. Two researchers independently analyzed the data, using grounded theory to inductively develop a model that represents the emerging attitude toward use of monitors during CSD. Results: Our model shows that the emerging attitudes toward using monitors during CSD is determined by view on CSD, desire for peace of mind, emotional valence attached to using monitors, and the realization that the sole use of behavior-based observational measures could be unreliable in a CSD context. We identified several facilitators and barriers to inform future implementation strategies. Conclusion: Most participants had no objections, and all participants found the use of monitoring devices during CSD feasible and acceptable. We identified a number of facilitators and barriers and suggested that being aware that care can be improved, good communication, shared decision making, and continuing professional education can overcome the identified barriers. We suggest future research would focus on developing implementation strategies and guidelines for introducing objective monitoring devices in diverse palliative care settings. 

Access source material through DOI

Assessing a WeChat-Based Integrative Family Intervention (WIFI) for Schizophrenia: Protocol for a Stepped-Wedge Cluster Randomized Trial

Background: Schizophrenia is a persistent and debilitating mental illness, and its prognosis depends largely on supportive care and systematic treatment. In developing countries like China, families constitute the major caregiving force for schizophrenia and are faced with many challenges, such as lack of knowledge, skills, and resources. The approach to support family caregiving in an accessible, affordable, feasible, and cost-effective way remains unclear. The wide-spread use of WeChat provides a promising and cost-effective medium for support.; Objective: We aim to present a protocol for assessing a WeChat-based integrative family intervention (WIFI) to support family caregiving for schizophrenia.; Methods: We will develop a WIFI program that includes the following three core components: (1) psychoeducation (WeChat official account), (2) peer support (WeChat chat group), and (3) professional support (WeChat video chat). A rigorous stepped-wedge cluster randomized trial will be used to evaluate the implementation, effectiveness, and cost of the WIFI program. The WIFI program will be implemented in 12 communities affiliated with Changsha Psychiatric Hospital through the free medicine delivery process in the 686 Program. The 12 communities will be randomized to one of four fixed sequences every 2 months during an 8-month intervention period in four clusters of three communities each. Outcomes will be assessed for both family caregivers and people with schizophrenia. Family caregivers will be assessed for their knowledge and skills about caregiving, social support, coping, perceived stigma, caregiver burden, family functioning, positive feelings, and psychological distress. People with schizophrenia will be assessed for their symptoms, functioning, quality of life, recovery, and rehospitalization. Cost data, such as intervention costs, health care utilization costs, and costs associated with lost productivity, will be collected. Moreover, we will collect process data, including fidelity and quality of program implementation, as well as user attitude data. Treatment effects will be estimated using generalized linear maximum likelihood mixed modeling with clusters as a random effect and time as a fixed effect. Cost-effectiveness analysis will be performed from the societal perspective using incremental cost-effectiveness ratios. Qualitative analysis will use the grounded theory approach and immersion-crystallization process.; Results: The study was funded in August 2018 and approved by the institutional review board on January 15, 2019. Preliminary baseline data collection was conducted in May 2019 and completed in September 2019. The WIFI program is expected to start in September 2020.; Conclusions: This is the first study to assess a WeChat-based mHealth intervention to support family caregiving for schizophrenia in China. The innovative study will contribute to the development of a more cost-effective and evidence-based family management model in the community for people with schizophrenia, and the approach could potentially be integrated into national policy and adapted for use in other populations.; Trial Registration: ClinicalTrials.gov NCT04393896; https://clinicaltrials.gov/ct2/show/NCT04393896.; International Registered Report Identifier (irrid): PRR1-10.2196/18538. (©Yu Yu, Tongxin Li, Shijun Xi, Yilu Li, Xi Xiao, Min Yang, Xiaoping Ge, Shuiyuan Xiao, Jacob Tebes. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 25.08.2020.)

Access source material through DOI

Introducing the Video call to facilitate the communication between health care providers and families of patients in the intensive care unit during COVID-19 pandemia

Effective communication improves family satisfaction, trust in ICU physicians, clinical decision-making and psychological well-being being of family members (Lilly et al., 2000; Wood, 2018). Complete isolation due to the COVID-19 pandemic restrictions disables clinician-family meetings and the limitations of hospital visitation policies do not permit caregivers to be near their loved ones, with the risk of leaving them without any form of trusted representation and advocacy. Always be open minded to new ways of acting your mission.

Access source material through DOI

A Systematic Review of Home-Setting Psychoeducation Interventions for Behavioral Changes in Dementia: Some Lessons for the COVID-19 Pandemic and Post-Pandemic Assistance

Background Impacts of social isolation measures imposed by COVID-19 Pandemic on mental health and quality of life of older adults living with dementia and their caregivers remain unexplored. Studies have shown that psychoeducational and psychosocial interventions can manage behavioral and psychological symptoms in dementia (BPSD) and reduce the emotional burden on family members when applied in home-setting scenarios. Method a comprehensive systematic review of useful interventions for easing the BPSD burden in patients with dementia (PwD) and their caregivers in the context of COVID-19 quarantine was performed from January 2010 to March 2020. Results From a total of 187 articles retrieved from electronic databases (MEDLINE, LILACS, Cochrane and SCOPUS), 43 studies were eligible for this review. Most of the psychosocial and psychoeducational interventions described were person-centered strategies based on the cognitive-behavioral approach or informational tools to enhance care providers' knowledge of dementia. Most studies achieved successful results in handling BPSD and mood-anxiety symptoms of care providers, contributing to an overall improvement in dyad life quality. Conclusion Evidence from the last few years suggest that low-cost techniques, tailored to the dyad well-being, with increasing use of technology through friendly online platforms and application robots, can be an alternative to conventional assistance during COVID-19 Pandemic. Nevertheless, the world's current experience regarding the duration of the COVID-19 Pandemic and its effects on the cognition, behavior, and life quality of PwD will demand research on preventive and protective factors of dementia and the pursue of efficient interventions in different scenarios.

Access source material through DOI

Sex and gender differences in technology needs and preferences among informal caregivers of persons with dementia

Background: Dementia is a major public health concern associated with significant caregiver demands and there are technologies available to assist with caregiving. However, there is a paucity of information on caregiver needs and preferences for these technologies, particularly from a sex and gender perspective. To address this gap in research, the objectives of this study are to examine (1) the knowledge of technology, (2) perceived usefulness of technology, (3) feature preferences when installing and using technology and (4) sex and gender influences on technology needs and preferences among family caregivers of persons with dementia (PWD) across North America. Methods: A secondary analysis was conducted on an existing cross-sectional survey with family caregivers of PWDs. Respondents were recruited through the Alzheimer Society of Canada, the Victorian Order of Nurses and Adult Day Programs and other Canadian health care provision institutes. Descriptive statistics, bivariate and multivariate analyses were used to describe the study sample, uncover differences between male and female caregivers and examine sex and gender influences on caregivers' technology needs and preferences. Results: A total of 381 eligible responses were received over a nine month data collection period. The majority of respondents did not know much about and never used any technologies to assist with caregiving. "Being easy to install", "easy to learn how to use" and "cost" were identified as the most important features when purchasing and setting up technology, while "reliability" was identified as the most important feature when using technology. Most respondents were willing to pay up to $500 to acquire individual technologies. Controlling for other socio-demographic variables, female respondents were more likely to have some or more knowledge about technology for caregiving while male respondents were more willing to pay higher amounts for these technologies compared to their female counterparts. Conclusions: As one of the first studies of its kind, our findings represent a step towards the incorporation of sex and gender considerations such as cost and reliability in technology design and promotion for caregivers. Future efforts are warranted to establish an in-depth understanding of sex and gender influences in relation to other social and environmental factors..

Access source material through DOI

Emerging Issues of Intelligent Assistive Technology Use Among People With Dementia and Their Caregivers: A U.S. Perspective

The increasing number of older adults with cognitive deficits, including dementia, poses a major challenge for public health in the United States. At the same time, the limited number of informal and professional caregivers available to support this rapidly growing population is of mounting concern. Not only does population aging limit the number of potential caregivers, but extant caregivers often lack skills to provide quality care. The integration of intelligent assistive technologies (IAT), including devices, robotics and sensors in many forms, into eldercare, may offer opportunities to reduce caregiver burden and enhance healthcare services while improving the quality of life among older adults with mild to severe cognitive deficits. However, many caregivers and their care recipients lack access to these technologies. The reasons for this reduced access are multifactorial, including the digital divide, sociocultural factors, and technological literacy. This mini review investigates the emerging use of IAT available to caregivers and older adults with cognitive deficits and explores the challenges in socioeconomic status and technological literacy as well as ethical and legal implications that should be considered in the design and development of IAT for older adults with cognitive deficits. Drawing from existing literature, it will suggest frameworks for design and adoption aimed at increased and equitable access for this vulnerable population. 

Access source material through DOI

Perceptions About Technologies That Help Community-Dwelling Older Adults Remain at Home: Qualitative Study

BACKGROUND: The population of Europe is aging rapidly. Most community-dwelling older adults (CDOAs) want to remain in their homes, particularly those experiencing functional decline. Politicians and academics repeatedly praise technological instruments for being the preferred solution for helping older adults with deteriorating health to remain at home. OBJECTIVE: This study aimed to understand the perceptions of CDOAs and their informal caregivers (ICs) and professional caregivers (PCs) about technologies that can help keep older adults at home. METHODS: This qualitative study used personal interviews, focus groups, and photo-elicitation interviews to better understand the perceptions of a convenience sample of 68 CDOAs, 21 ICs, and 32 PCs. RESULTS: A fraction of CDOAs did not perceive technological instruments to be a very useful means of helping them remain at home. However, the ICs and PCs were more positive. The CDOAs preferred and were more willing to adopt technologies related to their mobility and safety and those that would help slow down their cognitive decline. The ICs preferred technological aids that assist in the activities of daily living as well as safety-related technologies for detecting falls and helping to locate disoriented older adults. The PCs preferred integrated communication and information systems to improve collaboration between all stakeholders, housing equipped with technologies to manage complex care, high-performance ancillary equipment to transfer people with reduced mobility, and surveillance systems to ensure safety at home. CONCLUSIONS: Although our study reports that CDOAs have limited interest in innovative technologies to help them remain at home, their technological skills will undoubtedly improve in the future, as will those of ICs and PCs. Technological tools will play an increasingly important role in home health care. ©Henk Verloo, Thomas Kampel, Nicole Vidal, Filipa Pereira. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 04.06.2020.

Access source material through DOI

Analysis of the Components of a Cognitive-Behavioral Intervention for the prevention of Depression Administered via Conference Call to Nonprofessional Caregivers: A Randomized Controlled Trial

Effective and accessible interventions for indicated prevention of depression are necessary and lacking, especially for informal caregivers. Although telephone-based interventions could increase the accessibility for caregivers, randomized controlled trials are scarce, with no examination of prevention to date. Moreover, the efficacy of specific therapeutic components in preventive cognitive-behavioral programs is unknown. The main objective of this study was to evaluate the efficacy of a telephone-administered psychological preventive intervention in informal caregivers with high depressive symptoms. A total of 219 caregivers were randomized to a cognitive-behavioral conference call intervention (CBCC, n = 69), a behavioral-activation conference call intervention (BACC, n = 70), or a usual care control group (CG, n = 80). Both interventions consisted of five 90-minute group sessions. At the post-intervention, incidence of depression was lower in CBCC and BACC compared to CG (1.5% and 1.4% vs. 8.8%). Relative risk was 0.17 for the CBCC and 0.16 for the BACC, and the number-needed-to-treat was 14 in both groups. Depressive symptoms were significantly lower in BACC and BACC groups compared to CG (d = 1.16 and 1.29), with no significant differences between CBCC and BACC groups. The conference call intervention was effective in preventing depression and the behavioral-activation component (BACC) was comparable to the CBCC intervention.

Access source material through DOI

The relationship between engagement in online support groups and social isolation among military caregivers: Longitudinal questionnaire study

Background: There is a lack of research on the effectiveness of online peer support groups for reducing social isolation and depressive symptoms among caregivers, and previous research has mixed results. Objective: This study aimed to test whether military caregivers who joined a new online peer support community or engaged with an existing online community experienced decreased perceived social isolation and improved depressive symptoms over 6 months. Methods: We conducted a longitudinal study of 212 military caregivers who had newly joined an online community and those who were members of other military caregiver groups. Multiple indicators of perceived social isolation and depressive symptoms were assessed at baseline and at 3 and 6 months. Results: Compared with caregivers in the comparison group, caregivers who joined the new group experienced less perceived social isolation at 3 months (eg, number of caregivers in social network [unstandardized regression coefficients] b=0.49, SE 0.19, 95% CI 0.87 to 0.02), but this effect did not persist at 6 months. Those who engaged more with new or existing groups experienced less perceived social isolation over time (eg, number of caregivers in social network b=0.18, SE 0.06, 95% CI 0.02 to 0.27), and this relationship was mediated by increased interactions with other military caregivers (95% CI 0.0046 to 0.0961). Engagement with an online group was not associated with improvements in depressive symptoms. Conclusions: Online communities might help reduce social isolation when members engage with the group, but more intensive treatment is needed to improve depressive symptoms. 

Access source material through DOI

Reduced family care burden by using a communication robot: Case report

Here, we report that the use of a baby‐type robot (Smibi; Togo Seisakusyo, Aichi‐gun, Japan) helped improve the healing process and reduce the care burden of an aged woman undergoing home‐visit rehabilitation.

Access source material through DOI

Carers’ experience of using assistive technology for dementia care at home: a qualitative study

OBJECTIVE: Assistive technology (AT) can help carers (family, friends and neighbours) and people with dementia to stay well and safely at home. There are important gaps in what we know about experience of using AT from the perspective of carers of persons with dementia. This study investigates carers' experience of using AT in supporting and caring for persons with dementia who live at home. DESIGN: Qualitative phenomenological study with semi-structured interviews to achieve data saturation and thematic analysis to identify key themes. SETTING: Community-based within the UK. PARTICIPANTS: Twenty-three (14 women, nine men) adult carers of persons with dementia who have used at least one AT device. RESULTS: All participants reported benefiting to varying degrees from using AT. There were five themes and 18 subthemes that highlighted reasons for using AT and use of AT over time. Providing care for a person with dementia, motivation for using AT, changes to roles and routines, carer knowledge and skills for using AT and social, environmental and ethical considerations were the main themes. This study showed that AT can provide reassurance and support for carers of persons with dementia but there are difficulties with acquiring and continued use of AT as dementia progresses. CONCLUSIONS: Carers consider AT as an adjunct to care they provided in caring for a person with dementia. Use of AT should be considered in the personal, social and environmental context of persons with dementia and their carers. Further research and policy interventions are needed to address best use of resources and guidance on data sharing and data protection while using AT.

Access source material through DOI

COPe-support-a multi-component digital intervention for family carers for people affected by psychosis: study protocol for a randomized controlled trial

Background Psychosis often causes significant distress and impacts not only in the individuals, but also those close to them. Many relatives and friends ('carers') provide long-term support and need resources to assist them. We have co-produced a digital mental health intervention called COPe-support (Carers fOr People with Psychosis e-support) to provide carers with flexible access to high quality psychoeducation and interactive support from experts and peers. This study evaluates the effectiveness of COPe-support to promote mental wellbeing and caregiving experiences in carers. Methods This study is a single-blind, parallel arm, individually randomized controlled trial (RCT) comparing COPe-support, with attention control. Both groups continue to receive usual care. COPe-support provides interactive web-based psychoeducation on psychosis-related issues, wellbeing-promotion and network support through forums. The attention-control is a non-interactive online information resource pack. Carers living in England are eligible if they provide at least weekly support to a family member or close friend affected by psychosis, and use internet communication (including emails) daily. All trial procedures are run online, including collection of outcome measurements which participants will directly input into our secure platform. Following baseline assessment, a web-based randomization system will be used to allocate 360 carers to either arm. Participants have unlimited access to the allocated condition for 40 weeks. Data collection is at three time points (10, 20, and 40 weeks after randomization). Analyses will be conducted by trial statisticians blinded to allocation. The primary outcome is mental wellbeing measured by Warwick Edinburgh Mental Wellbeing Scale (WEMWBS), at 20 weeks. As well as an intention-to-treat analysis, a complier average causal effect (CACE) analysis will be conducted to estimate the intervention effect in participants who have accessed COPe-support content twice or more. The secondary objectives and analysis will examine other health and caregiving-related outcomes and explore mechanisms. In a process evaluation, we will interview 20% of the intervention arm participants regarding the acceptability of COPe-support. We will explore in detail participants' usage patterns. Discussion The results of this trial will provide valuable information about the effectiveness of COPe-support in promoting wellbeing and caregiving experiences in carers.

Access source material through DOI

Online interventions geared toward increasing resilience and reducing distress in family caregivers

Purpose of review Family caregivers of patients with cancer often spend a great deal of effort on physically and emotionally demanding work while taking care of patients. However, the majority of caregivers are not properly equipped for their role as caregivers, which may lead to increased distress in both caregivers and patients. Herein, we reviewed the recent literature (last 3 years) examining online interventions that seek to support caregiver resilience and decrease distress. Recent findings Our search identified interventions involving three main themes: informational support, positive activities, and social support. These are mostly in the form of web-based tools and mobile apps targeting both usability and quality of life. Social network services are also considered in this review as a new environment for caregivers to connect with other individuals with lived experience in similar circumstances.SummaryExisting studies on online interventions to support caregivers is still at a formative development stage and pilot tests of feasibility, rather than a substantive body of randomized controlled trials to assess the impact in different user populations, or to determine specific factors that impact caregiver distress level or resilience. More research is needed to further assess the long-term effects of online interventions on caregiver stress and resilience. Also, the role of different types of social network services and new forms of interaction, such as conversational agents, has not yet been fully investigated in caregiver populations. Future research should strive to seek new modes of providing services that may present novel opportunities to enhance caregiver resilience and reduce distress. 

Access source material through DOI

Care organising technologies and the post-phenomenology of care: An ethnographic case study

Care organising technologies are software applications that are intended primarily for informal carers, to help organise, document and coordinate caring work. These may be purchased privately or provided as part of state support. Take-up to date remains low. Based on empirical case studies of three such technologies and drawing on post-phenomenology and political science, we examined people's experience of caring when caring technologies find a way into their lives. Our findings show how care organising technologies have evolved in a political context that assumes informal support will supplement and sometimes substitute for state support. Technologies were largely designed to foreground the technical and organisational aspects of care such as planning meals, coordinating medication, and allocating and monitoring tasks among carers. For carers, the result was often a flattening of the landscape of care such that the socio-emotional work of caring was rendered invisible and relations between cared-for and caregiver were configured in narrow transactional terms. For a small number of carers, the focus on tasks was out of tune with their (often emotionally charged) experiences of care and led to active rejection of the technology. However, we also found examples of caregivers and the individuals they cared for using technologies adaptively to facilitate and embed existing care relationships. In these examples, the material/technical, socio-emotional and bodily aspects of caring were interwoven with the situated context of close, unique and evolving relationships. We conclude that the design and development of caring technologies would benefit by being informed by a broader orientation of caring as a relational practice. 

Access source material through DOI

The development of a web-based resource to provide information and psychosocial support to informal cancer carers in hospitals in Vietnam

Objective: Vietnam, like many low/middle income countries, lacks the infrastructure to provide information and psychosocial support to cancer patients and their carers. We undertook a codesign process to develop a web resource to inform and support carers. Methods: Cancer carers and health care professionals' perspectives regarding information and support needs and the content and delivery of web-based supports, were explored via five focus groups (n = 39) and semistructured interviews (n = 4) in Vietnam in 2018. Focus groups and interviews were transcribed verbatim and analyzed using thematic analysis. Resource components were verified at two joint stakeholder workshops attended by 40 participants. Results: The development of a web-based resource was identified as an urgent need. A web-based resource was viewed as a suitable interface to provide support across regions in a sustainable way. The structure of the resource should include peer-led videoed advice, signposting to services and include official endorsement. The potential resource components identified includes (a) cancer causes and consequences; (b) hospital administration, treatment processes, and prices; (c) daily living; (d) emotional and supportive information; (e) skills training; and (f) nutrition and traditional medicine. Conclusion: The development of a web-based resource to deliver information and psychosocial supports to cancer carers and by-proxy patients is an urgent requirement in Vietnam. Next steps will include resource development and testing the resources ability to address the unmet needs of cancer carers and patients. A web-based resource to support cancer carers has the potential for application to other developing countries. 

Access source material through DOI

Digital Mental Health Tools for Caregivers of Older Adults-A Scoping Review

Aim: Informal caregivers have an important role in bridging the gap between the assistance care recipients need and what can be provided by the health care systems across Europe. The burden of the caregiving role places a significant threat to caregiver health, and the vast majority of caregiver's report stress and emotional strain, depression, and increased rates of chronic diseases. In line with this, strengthening the caregiver's mental health is one of the main goals for optimal caregiving. Caregivers already struggle with the demand of their role while coping with health problems, social, family, and work obligations. The solution for the caregiver's mental health needs to be accessible, low cost, and time-effective. This scoping review investigates digital mental health tools available as a mean of supporting the mental health of caregivers. Method: Databases searched include Summon search box, the Cochrane Library, and PubMed. Three groups of keywords were combined: relating to digital mental health interventions for caregivers, digital mental health interventions and stress in elderly care, and digital mental health interventions and burden in elderly care. Results: Caregivers reported that digital mental health tools have an overall positive role in their health. Coping skills, emotion regulation, skill building, and education are found to be important aspects of digital mental health tools. There was a noted lack of digital mental health apps available specifically for the caregiver of older adults. Furthermore, the digital mental health tools, divided into three categories in this review, focused either on building skills or educating caregivers and assisting with the duties rather than the mental health of the caregiver itself. As repeatedly suggested in the reviewed studies, digital mental health interventions overall contribute to reducing the caregiver burden with a limitation of addressing one aspect of caregiver needs -i.e., specific coping skills or education regarding illnesses such as Alzheimer's disease and Dementia. The lack of all-encompassing, data and theory-driven digital mental health tools for addressing and supporting the caregiver's mental health is evident.

Access source material through DOI

Development of a mobile app for family members of Veterans with PTSD: identifying needs and modifiable factors associated with burden, depression, and anxiety

Family members of Veterans with posttraumatic stress disorder (PTSD) face high levels of burden that are poorly addressed by existing mental health services. Widely distributed mobile interventions could play a role in addressing these unmet needs. The purpose of this study was to characterize caregiver burden in those seeking a mobile app for self-management of stress symptoms and to develop a model to guide mobile interventions for family members. Those living with a Veteran with PTSD (n = 212) and interested in using a mobile intervention agreed to participate. The majority reported moderate-to-severe levels of depression (60%) and/or caregiver burden (59%). Relationship quality, communication, and self-efficacy for caregiving were the strongest predictors of negative outcomes (p’s <.001), and qualitative results identified several additional unmet needs (e.g. relationship concerns, safety concerns). This study identifies potential mechanisms by which a mobile app could improve family functioning in the context of PTSD.

Access source material through DOI

Telepresence robots: Encouraging interactive communication between family carers and people with dementia

Objective: The aim of the study was to explore the feasibility of using telepresence robots to encourage interactive communication in dementia care, from the perspective of family carers. Methods: Qualitative findings from semi-structured interviews with six family carers. Results: Generally, family carers reported a feeling of presence and connectedness when talking to their family member via the telepresence robots. They reported the robots as helping to enhance longer conversations and social connection with their family member. Conclusion: Telepresence may offer potential to encourage social connection, in particular where families are unable to make regular visits to the nursing home.

Access source material through DOI

Communicative Care in Online Forums: How Burdened Informal Caregivers Seek Mediated Social Support

Health care in aging societies increasingly demands that relatives, partners, or friends provide informal care for loved ones at their end of life. Yet, being an informal caregiver involves significant health threats caused by so-called caregiver burden. To cope with the broad spectrum of challenges, informal caregivers seek social support in the care relationship network emerging around a (future) patient. However, obtaining social support is not limited to offline contexts. Members of online communities also provide experiential knowledge and social support. To explore how informal caregivers seek and provide social support online and how this is interrelated with their care relationship networks, we conducted a qualitative content analysis of 75 threads about advance care planning from German online forums (2003-2017). Our findings show that informal caregivers rely on what we conclusively coined communicative care (i.e., informational and emotional support in burdensome care situations), often in response to impaired offline relationships within care relationship networks.

Original source (some source materials require subscription or permission to access)

Care providers’ and patients’ attitudes toward using electronic-patient reported outcomes to support patients with traumatic brain injury: a qualitative study (PRiORiTy)

Objectives: To (a) identify residual symptoms and deficits resulting from a traumatic brain injury (TBI) and impact on patients’ and their families’ quality of life; (b) explore views and experience of care providers, researchers, patients, and carers of using PROMs; and (c) explore their attitudes toward reporting symptoms and impacts on an electronic platform. Methods: Qualitative semi-structured interviews with people with TBI and their carers; health-care professionals, researchers, and third sector staff members working with people with TBI. Results: Symptoms and long-term impacts of TBI included cognitive problems, difficulties functioning, anxiety, and depression. PROMs were seen as improving knowledge of residual symptoms and their impact post-TBI but not always accurately reflecting patients’ residual problems. Challenges to completing PROMs were cognitive impairment and lack of insight into condition. Perceived advantages of an electronic platform included easy data collection; flexibility; improving workflow; and the ability to send/ receive feedback and reminders easily. Suggested features of an electronic platform included simple layout, lay language, short questions, few items on the screen, and capability to send/receive feedback and additional information. Conclusion: There is a demand for reporting symptoms and their impact electronically, providing the layout is kept simple and feedback from clinicians is provided. 

Access source material through DOI

Caring4Dementia: A mobile application to train people caring for patients with dementia

Dementia is a term used when the brain functionality reduces in terms of behaviour, memory and thinking clearly for daily activities. In the early stages, memory impairment limits the memory processes in patients with dementia (PwD). In advanced stages, it affects the PwD’s autonomy when performing complex daily activities such as PwD’s interaction and communication with people around them. Dementia is becoming one of the major causes of disability and dependency among older people worldwide. It affects the ability of an individual to reason with and to understand others, which creates difficulties in communication between the family caregivers and PwDs. Thus, there is a need for a platform to help family caregivers to communicate with the PwDs efficiently. One of the helpful tools to work with is a mobile application (app). Mobile apps can be widely available and easy to use for the people caring for PwDs. This paper describes the development of a mobile app for people interacting with PwDs. The app contains different scenarios related to daily activities that are usually performed by PwDs. Each scenario includes a set of options for the users and asks them to choose the option in response to the corresponding daily activity. Having chosen the option, the app provides the user with comments which are already included in the app for each scenario. The comments were developed by the research team in partnership with clinicians having more than 5 years of experience with PwDs. Caring4Dementia app can address the communication problem by providing (1) specific knowledge about the PwD’s condition cognitive performance evaluation, and monitoring, and (2) educating on appropriate behaviour to adopt while facing communication challenges associated with dementia. The theoretical framework of a communication training app introduced in the present paper will direct the future empirical investigations where the effectiveness of the app will be compared to the effectiveness of currently existing methods. 

Access source material through DOI

Technology and Caregiving: Emerging Interventions and Directions for Research

An array of technology-based interventions has increasingly become available to support family caregivers, primarily focusing on health and well-being, social isolation, financial, and psychological support. More recently the emergence of new technologies such as mobile and cloud, robotics, connected sensors, virtual/augmented/mixed reality, voice, and the evermore ubiquitous tools supported by advanced data analytics, coupled with the integration of multiple technologies through platform solutions, have opened a new era of technology-enabled interventions that can empower and support family caregivers. This paper proposes a conceptual framework for identifying and addressing the challenges that may need to be overcome to effectively apply technology-enabled solutions for family caregivers. The paper identifies a number of challenges that either moderate or mediate the full use of technologies for the benefit of caregivers. The challenges include issues related to equity, inclusion, and access; ethical concerns related to privacy and security; political and regulatory factors affecting interoperability and lack of standards; inclusive/human-centric design and issues; and inherent economic and distribution channel difficulties. The paper concludes with a summary of research questions and issues that form a framework for global research priorities.

Access source material through DOI

The care capacity goals of family carers and the role of technology in achieving them

Background: As global populations age, governments have come to rely heavily on family carers (FCs) to care for older adults and reduce the demands made of formal health and social care systems. Under increasing pressure, sustainability of FC's unpaid care work has become a pressing issue. Using qualitative data, this paper explores FCs' care-related work goals, and describes how those goals do, or do not, link to technology. Methods: We employed a sequential mixed-method approach using focus groups followed by an online survey about FCs' goals. We held 10 focus groups and recruited 25 FCs through a mix of convenience and snowball sampling strategies. Carer organizations helped us recruit 599 FCs from across Canada to complete an online survey. Participants' responses to an open-ended question in the survey were included in our qualitative analysis. An inductive approach was employed using qualitative thematic content analysis methods to examine and interpret the resulting data. We used NVIVO 12 software for data analysis. Results: We identified two care quality improvement goals of FCs providing care to older adults: enhancing and safeguarding their caregiving capacity. To enhance their capacity to care, FCs sought: 1) foreknowledge about their care recipients' changing condition, and 2) improved navigation of existing support systems. To safeguard their own wellbeing, and so to preserve their capacity to care, FCs sought to develop coping strategies as well as opportunities for mentorship and socialization. Conclusions: We conclude that a paradigm shift is needed to reframe caregiving from a current deficit frame focused on failures and limitations (burden of care) towards a more empowering frame (sustainability and resiliency). The fact that FCs are seeking strategies to enhance and safeguard their capacities to provide care means they are approaching their unpaid care work from the perspective of resilience. Their goals and technology suggestions imply a shift from understanding care as a source of 'burden' towards a more 'resilient' and 'sustainable' model of caregiving. Our case study findings show that technology can assist in fostering this resiliency but that it may well be limited to the role of an intermediary that connects FCs to information, supports and peers. 

Access source material through DOI

Does Telehealth Delivery of a Dyadic Dementia Care Program Provide a Noninferior Alternative to Face-To-Face Delivery of the Same Program? A Randomized, Controlled Trial

Objective: This study aimed to determine whether delivery of a dyadic intervention using telehealth was noninferior to delivery of the same program using traditional face-to-face delivery through home visits. Design: We conducted a noninferiority randomized controlled trial. Participants: Participants had a diagnosis of dementia, were living in the community, and had an informal caregiver who reported difficulties in managing activities of daily living or behavioral symptoms. Intervention: Participants were randomized to receive either telehealth or home visit delivery of the same intervention program. Measurements: The primary outcome was the Caregiving Mastery Index, secondary outcomes included caregiver's perceptions of change, activities of daily living function, and type and frequency of behavioral symptoms of persons living with dementia. Therapists delivering the intervention recorded the time spent delivering the intervention as well as travel time. Results: Sixty-three dyads were recruited and randomized. Both groups reported improvements for the primary outcome, however, these were not statistically significant. There were no significant differences between groups for the primary outcome (mean difference 0.09 (95% confidence interval −1.26 to 1.45) or the secondary outcomes at 4 months. Both groups reported significant improvements in caregiver's perceptions of change. The amount of time spent delivering the content of the program was similar between groups, however offering the intervention via telehealth significantly reduced travel time (mean 255.9 minutes versus mean 77.2 minutes, p <0.0001). Conclusion: It is feasible to offer dyadic interventions via telehealth and doing so reduces travel time and results in similar benefits for families. 

Access source material through DOI

Online Self-Management Support for Family Caregivers Dealing With Behavior Changes in Relatives With Dementia (Part 2): Randomized Controlled Trial

BACKGROUND: Online contacts with a health professional have the potential to support family caregivers of people with dementia. OBJECTIVE: The goal of the research was to study the effects of an online self-management support intervention in helping family caregivers deal with behavior changes of a relative with dementia. The intervention-involving among others personal email contacts with a dementia nurse-was compared with online interventions without these email contacts. METHODS: A randomized controlled trial was conducted with 81 family caregivers of people with dementia who live at home. Participants were randomly assigned to a (1) major self-management support intervention consisting of personal email contacts with a specialist dementia nurse, online videos, and e-bulletins; (2) medium intervention consisting only of online videos and e-bulletins; or (3) minor intervention consisting of only the e-bulletins. The primary outcome was family caregivers' self-efficacy in dealing with behavior changes of the relative with dementia. Secondary outcomes were family caregivers' reports of behavior problems in the people with dementia and the quality of the relationship between the family caregiver and the person with dementia. Measurements were performed at the baseline and at 6 (T1) and 12 weeks (T2) after the baseline. A mixed-model analysis was conducted to compare the outcomes of the 3 intervention arms. RESULTS: Family caregivers participating in the major intervention involving email contacts showed no statistically significant differences in self-efficacy after the intervention compared with the minor intervention involving only e-bulletins (difference -0.02, P=.99). In the adjusted analysis, the medium intervention (involving videos and e-bulletins) showed a negative trend over time (difference -4.21, P=.09) and at T1 (difference -4.71, P=.07) compared with the minor intervention involving only e-bulletins. No statistical differences were found between the intervention arms in terms of the reported behavior problems and the quality of the relationship between the family caregiver and the person with dementia. CONCLUSIONS: The expectation that an online self-management support intervention involving email contacts would lead to positive effects and be more effective than online interventions without personal email contacts was not borne out. One explanation might be related to the fact that not all family caregivers who were assigned to that intervention actually made use of the opportunity for personal email contact. The online videos were also not always viewed. To obtain more definite conclusions, future research involving extra efforts to reach higher use rates is required. TRIAL REGISTRATION: Netherlands Trial Registry NTR6237; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6237 (Archived by WebCite at http://www.webcitation.org/6v0S4fxTC). INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/resprot.8365. ©Judith G Huis in het Veld, Bernadette M Willemse, Iris FM van Asch, Rob BM Groot Zwaaftink, Paul-Jeroen Verkade, Jos WR Twisk, Renate Verkaik, Marco M Blom, Berno van Meijel, Anneke L Francke. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 25.02.2020.

Access source material through DOI

Stress in the volunteer caregiver: Human-centric technology can support both caregivers and people with dementia

Background and Objectives: Currently, one in eight people over the age of 65 have dementia, and approximately 75% of caregiving is provided by volunteer family members with little or no training. This study aimed to quantify points of stress for home-based caregivers with the aim of reducing stress for them while concurrently supporting quality of life for the people with dementia whom they cared for. The overreaching purpose was to increase our knowledge of the caregiver stress burden and explore potential technologies and behaviors to ease it. Materials and Methods: We interviewed home-based and professional caregivers regarding causes of emotional and physical stress and methods they used to alleviate it. Results: This study found that: (1) dementia symptoms created a burden of stress for home-based caregivers primarily in the areas of medication management, memory loss, hygiene care and disruptive behaviors; (2) home-based caregivers identified “finding available resources” as the most important source of stress relief; (3) a minority of home-based caregivers possessed a resource network and knew how to find resources but all professional caregivers were able to find resources and support; (4) home-based caregivers combated dementia symptoms with positive distractions and human touch with little use of technology, since it was mostly unknown; and 5) facility-based caregivers were knowledgeable and readily used dementia-based technology. Conclusion: Since professional caregivers have access to technological resources that our home-based caregivers lack, one might logically conclude that we should transfer technology used by professionals to those with dementia. However, great caution needs to be in place before we take that step. Successful technology should address the human experience as home-based caregivers try to use new technologies. Human-centric technology addresses the needs of both people with dementia and the home-based caregiver. 

Access source material through DOI

Effect of education and telephone counseling on caregiver strain and unmet needs in family caregivers and self-care behaviors in patients with cancer: A randomized clinical trial

Background: Cancer treatment has been increasingly fulfilled on an outpatient basis by family caregivers. The variety and severity of caregivers' responsibilities expose them to physical and mental risks. Investigating the effect of education and telephone counseling on patient and family outcomes requires performing further studies. Aim: This study aimed to determine the effect of education and telephone counseling on caregiver strain and unmet needs in family caregivers and self-care behaviors in cancer patients. Method: The present randomized controlled trial was conducted on 60 caregivers-cancer patients referred to urban health education clinics in northeastern Iran within 2018-2019. A 20-minute face-to-face training session was held for the caregivers of cancer patients, and seven training pamphlets were given to the caregivers. Moreover, the intervention group received four telephone counseling sessions during three courses of chemotherapy. The strain and unmet needs of caregivers were measured by the Zarit Burden Interview and Supportive Care Needs Survey-Partners and Caregivers questionnaires, respectively. The patient self-care was assessed by the Nail Self-care Diary questionnaire. The data were analyzed by SPSS software (version 16) using an independent t-test and paired t-test. Results: The mean values of caregivers' age were 38.9±12.7 and 37.7±8.6 years in the intervention and control groups, respectively. The results of the independent t-test showed no statistically significant difference between the two groups (P=0.42). The results also revealed that the mean scores of caregiver strain and unmet needs decreased following the intervention, and the mean scores of self-care behaviors increased in the intervention group after the intervention (P=0.001). Implications for Practice: Education and telephone counseling can simultaneously help to follow up problems, improve self-care behaviors in cancer patients, alleviate the caregiver strain, and meet the needs of family caregivers. 

Access source material through DOI

The ResidentialCare Transition Module: A single-blinded randomized controlled evaluation of a telehealth support intervention for family caregivers of persons with dementia living in residential long-term care

Background: Families do not fully disengage from care responsibilities following relatives' admissions to residential long-term (RLTC) care settings such as nursing homes. Caregiver stress, depression, or other key outcomes remain stable or sometimes increase following a relative's RLTC entry. Some interventions have attempted to increase family involvement after institutionalization, but few rigorous studies have demonstrated whether these interventions are effective in helping families navigate the potential emotional and psychological upheaval presented by relatives' transitions to RLTC environments. The Residential Care Transition Module (RCTM) provides six formal sessions of consultation (one-to-one and family sessions) over a 4-month period to family caregivers who have admitted a relative to a RLTC setting. Methods: In this embedded mixed methods randomized controlled evaluation, family members who have admitted a cognitively impaired relative to a RLTC setting are randomly assigned to the RCTM (n = 120) or a usual care control condition (n = 120). Primary outcomes include reductions in family members' primary subjective stress and negative mental health outcomes; secondary role strains; and residential care stress. The mixed methods design will allow for an analysis of intervention action mechanisms by "embedding" qualitative components (up to 30 semi-structured interviews) at the conclusion of the 12-month evaluation. Discussion: This evaluation will fill an important clinical and research gap by evaluating a psychosocial intervention designed for families following RLTC admission that determines whether and how the RCTM can help families better navigate the emotional and psychological challenges of residential care transitions. Trial registration: ClinicalTrials.gov (NCT02915939, prospectively registered). 

Access source material through DOI

Potential for Digital Monitoring to Enhance Wellbeing at Home for People with Mild Dementia and Their Family Carers

Digital technologies have the potential to assist people with dementia to monitor day to day activities and mitigate the risks of living independently. This purposive pilot study surveyed participants for frailty, wellbeing, and perceived carer burden using the 3Rings(TM) digital plug. 30 paired participants used the digital device for four months. People with dementia reported a decline in wellbeing and increased frailty. Family carers reported a decline in wellbeing but 18 reported a reduction in burden. The use of digital monitoring by family carers demonstrated a reduction in their perceived burden and the device was acceptable to people with mild dementia living alone.

Access source material through DOI

eHealth Education: Methods to Enhance Oncology Nurse, Patient, and Caregiver Teaching

BACKGROUND: eHealth can enhance the delivery of clinical cancer care by offering unique education opportunities for oncology nurses, patients, and family caregivers throughout the cancer trajectory. OBJECTIVES: This article reviews eHealth technology that can be applied to oncology education, such as mobile health applications, text messaging, web-based education, and audio- and videoconferencing. METHODS: Case studies provide exemplars of eHealth technologies used for delivering oncology education to nurses, patients, and caregivers. FINDINGS: By using eHealth technologies to obtain and provide education, oncology nurses are well positioned to improve the lives of patients and caregivers.

Access source material through DOI

Effects of a Telehealth Early Palliative Care Intervention for Family Caregivers of Persons With Advanced Heart Failure: The ENABLE CHF-PC Randomized Clinical Trial

Importance: Family caregivers of persons with advanced heart failure perform numerous daily tasks to assist their relatives and are at high risk for distress and poor quality of life. Objective: To determine the effect of a nurse-led palliative care telehealth intervention (Educate, Nurture, Advise, Before Life Ends Comprehensive Heart Failure for Patients and Caregivers [ENABLE CHF-PC]) on quality of life and mood of family caregivers of persons with New York Heart Association Class III/IV heart failure over 16 weeks. Design, Setting, and Participants: This single-blind randomized clinical trial enrolled caregivers aged 18 years and older who self-identified as an unpaid close friend or family member who knew the patient well and who was involved with their day-to-day medical care. Participants were recruited from outpatient heart failure clinics at a large academic tertiary care medical center and a Veterans Affairs medical center from August 2016 to October 2018. Intervention: Four weekly psychosocial and problem-solving support telephonic sessions lasting between 20 and 60 minutes facilitated by a trained nurse coach plus monthly follow-up for 48 weeks. The usual care group received no additional intervention. Main Outcomes and Measures: The primary outcomes were quality of life (measured using the Bakas Caregiver Outcomes Scale), mood (anxiety and/or depressive symptoms measured using the Hospital Anxiety and Depression Scale), and burden (measured using the Montgomery-Borgatta Caregiver Burden scales) over 16 weeks. Secondary outcomes were global health (measured using the PROMIS Global Health instrument) and positive aspects of caregiving. Results: A total of 158 family caregivers were randomized, 82 to the intervention and 76 to usual care. The mean (SD) age was 57.9 (11.6) years, 135 (85.4%) were female, 82 (51.9%) were African American, and 103 (65.2%) were the patient's spouse or partner. At week 16, the mean (SE) Bakas Caregiver Outcomes Scale score was 66.9 (2.1) in the intervention group and 63.9 (1.7) in the usual care group; over 16 weeks, the mean (SE) Bakas Caregiver Outcomes Scale score improved 0.7 (1.7) points in the intervention group and 1.1 (1.6) points in the usual care group (difference, -0.4; 95% CI, -5.1 to 4.3; Cohen d = -0.03). At week 16, no relevant between-group differences were observed between the intervention and usual care groups for the Hospital Anxiety and Depression Scale anxiety measure (mean [SE] improvement from baseline, 0.3 [0.3] vs 0.4 [0.3]; difference, -0.1 [0.5]; d = -0.02) or depression measure (mean [SE] improvement from baseline, -0.2 [0.4] vs -0.3 [0.3]; difference, 0.1 [0.5]; d = 0.03). No between-group differences were observed in the Montgomery-Borgatta Caregiver Burden scales (d range, -0.18 to 0.0). Differences in secondary outcomes were also not significant (d range, -0.22 to 0.0). Conclusions and Relevance: This 2-site randomized clinical trial of a telehealth intervention for family caregivers of patients with advanced heart failure, more than half of whom were African American and most of whom were not distressed at baseline, did not demonstrate clinically better quality of life, mood, or burden compared with usual care over 16 weeks. Future interventions should target distressed caregivers and assess caregiver effects on patient outcomes. Trial Registration: ClinicalTrials.gov Identifier: NCT02505425.

Access source material through DOI

Perceptions on connecting respite care volunteers and caregivers

The most common requirement for informal caregivers is to experience a respite or temporary break from their caregiving routine. Some initiatives have been undertaken to provide respite care through volunteer providers. We report on a qualitative study carried out in Santiago, Chile, to learn about the willingness of potential volunteers to provide respite care for bedridden older persons, as well as their willingness to use information and communication technologies (ICT) to connect to caregivers in a low-income neighbourhood within their own geographic district. A trustworthy institution that mediates the volunteer–caregiver relationship is considered to be important by potential volunteers. Potential volunteers were found to be willing to use ICT to provide respite care, sharing basic information about themselves. However, they were also aware of the digital skill gap that may exist between them and the caregivers and were distrustful of unknown websites that could connect them to care recipients. 

Access source material through DOI

Supporting patients and carers affected by pancreatic cancer: A feasibility study of a counselling intervention

Purpose: Patients with pancreatic cancer have extremely high unmet psychological and physical needs. Family carers of these patients have even higher levels of distress than patients. Our purpose was to assess the feasibility and acceptability of a counselling intervention in patients diagnosed with pancreatic cancer and their carers. Methods: We conducted a single-arm feasibility study of the PREPARES (Patients and RElatives affected by PAncreatic cancer: Referral, Education and Support) pilot intervention. Patient and carer participants received up to nine counselling sessions delivered by a trained nurse via telephone and/or telehealth technology. The intervention, informed by self-efficacy theory, involved components to assess and address care needs, and provide feedback to clinicians. Feasibility was measured using participation and retention rates. Participants completed semi-structured interviews at the end of the intervention about acceptability. These were analysed using thematic analysis. Results: Twelve people participated: five patients and seven carers (38% and 50% participation rates respectively). Most participants (eight) completed all nine counselling sessions; two chose to receive fewer sessions and two were discontinued requiring more intensive psychiatric support. The intervention was highly acceptable. Participants unanimously preferred the telephone over video-conferencing and to receive counselling separately from their carer/patient. The main perceived benefits were emotional support, the nurse-counsellors’ knowledge, care coordination and personalised care. Suggested improvements included a welcome pack about their nurse-counsellor and that sessions should continue beyond nine sessions if required. Conclusions: The PREPARES intervention was feasible and highly acceptable. This low-cost intervention provided much-needed support to people affected by this devastating disease.

Access source material through DOI

Increasing preparedness for caregiving and death in family caregivers of patients with severe illness who are cared for at home - study protocol for a web-based intervention

Background Family caregivers of patients with severe illness and in need for a palliative care approach, face numerous challenges and report having insufficient preparedness for the caregiver role as well as a need for information and psychosocial support. Preparing to care for a severely ill family members also means becoming aware of death. Feelings of being prepared are associated with positive aspects and regarded protective against negative health consequences. Methods The study adheres to the SPIRIT-guidelines (Supplementary 1), uses a pre-post design and include a web-based intervention. Inclusion criteria are; being a family caregiver of a patient with severe illness and in need of a palliative care approach. The intervention which aims to increase preparedness for caregiving and death is grounded in theory, research and clinical experience. The topics cover: medical issues, symptoms and symptom relief; communication within the couple, how to spend the time before death, being a caregiver, planning for the moment of death and; considerations of the future. The intervention is presented through videos and informative texts. The website also holds an online peer-support discussion forum. Study aims are to: evaluate feasibility in terms of framework, content, usage and partners' experiences; explore how the use of the website, influences family caregivers' preparedness for caregiving and death; explore how the use of the website influences family caregivers' knowledge about medical issues, their communication with the patient and their considerations of the future; and to investigate how the family caregivers' preparedness for caregiving and death influences their physical and psychological health and quality of life 1 year after the patient's death. Data will be collected through qualitative interviews and a study-specific questionnaire at four time-points. Discussion This project will provide information about whether support via a website has the potential to increase preparedness for caregiving and death and thereby decrease negative health consequences for family caregivers of patients affected by severe illness. It will provide new knowledge about intervention development, delivery, and evaluation in a palliative care context. Identification of factors before death and their association with family caregivers' preparedness and long-term health may change future clinical work.

Access source material through DOI

Voice‐Controlled Intelligent Personal Assistants to Support Aging in Place

BACKGROUND/OBJECTIVES: Many older adults wish to age in place, and voice‐controlled intelligent personal assistants (VIPAs; eg, Amazon Echo and Google Home) potentially could support unmet home needs. No prior studies have researched the real‐world use of VIPAs among older adults. We sought to explore how older adults and caregivers utilize VIPAs. DESIGN/MEASUREMENT: Retrospective review of all verified purchase reviews of the Amazon Echo posted on Amazon.com between January 2015 and January 2018, with filtering for health‐related older adult key words. Open‐ended reviews were qualitatively analyzed to identify relevant themes. RESULTS: On retrieval, there were 73 549 reviews; and with subsequent key word filtering, 125 total reviews were subsequently analyzed. Five major themes were identified: (1) entertainment ("For two very senior citizens...we have really had fun with Echo. She tells us jokes, answers questions, plays music.); (2) companionship ("A senior living alone...I now have Alex to talk to."); (3) home control; (4) reminders ("I needed something that would provide me with information I couldn't remember well, such as the date, day, or my schedule...I highly recommend for anyone with memory challenges"); and (5) emergency communication. Several felt it reduced burdening caregivers. "...You also feel guilt from fear of overburdening your caregivers. Alexa has alleviated much of this." Specifically, caregivers found that: "By making playlists of songs from her youth whoever is providing care, family or professional caregiver, can simply request the right song for the moment in order to sooth, redirect, or distract Mom." Alternatively, negative reviewers felt the VIPA misunderstood them or could not adequately respond to specific health questions. CONCLUSION: VIPAs are a low‐cost artificial intelligence that can support older adults in the home and potentially reduce caregiver burden. This study is the first to explore VIPA use among older adults, and further studies are needed to examine the direct benefits of VIPAs in supporting aging in place.

Access source material through DOI

Use and impact of virtual reality simulation in dementia care education: A scoping review

Background: Communication and empathy are considered as key competences in the care of persons with dementia. Virtual reality might be an effective intervention to train informal and professional caregivers of persons with dementia in order to improve their communication skills and empathy.; Objectives: The aim of this study was to map the use and impact of virtual reality simulation in dementia care education.; Method: A scoping review was performed. Studies with all types of qualitative or quantitative design published since 2007 in English, French or German were included if a virtual reality intervention was examined in a dementia care education setting (e.g. nursing school, caregiver training). The literature search was conducted in six databases (MEDLINE, CINAHL, PsycINFO, Web of Science Core Collection, ERIC, and Inspec), including an additional hand search as well as backward and forward citation tracking of included studies. Charted data was narratively reported by clustering results according to study characteristics and impact of virtual reality.; Results: The review process resulted in the inclusion of six studies published between 2012 and 2017. Two of them are ongoing studies. Three studies had a one group pre-post-test design and in one study a post-test only design was applied. The samples consisted of caregivers of people with dementia as well as students and varied in size between seven and 126. Eight different outcomes were measured, e.g. empathy, competence, and stress. Interventions resulted in improvements of caregivers' and students' empathy and competences among other outcomes.; Conclusions: No studies with controlled design and group comparisons are available yet. There are some indications that virtual reality might be an effective intervention to train caregivers of persons with dementia. Little is known about the use and impact of virtual reality in dementia-related education. Since studies are rare and do not address effectiveness, the findings of this review can substantially contribute to guide further research on this topic.

Access source material through DOI

A Tablet App Supporting Self-Management for People With Dementia: Explorative Study of Adoption and Use Patterns

Background: Assistive technology (AT) is rapidly emerging within dementia care and support. One area of AT application is support of people with dementia in compensating for cognitive symptoms and thereby promoting their self-management. There is, however, little evidence for the applicability, usability, and effectiveness of AT for people with dementia, and there is a need to identify factors that can promote adoption.; Objective: This study aimed to (1) evaluate the applicability and usability of an app, tailor-made for people with dementia; (2) explore factors affecting adoption; (3) explore the possible influence of caregiver involvement; and (4) contribute to process evaluation of the intervention.; Methods: The ReACT (Rehabilitation in Alzheimer's disease using Cognitive support Technology) app was designed as a holistic solution to support memory and structure in daily living. Persons with dementia had access to a personal user account, and family caregivers were given a parallel login. Written and Web-based materials were provided to support self-applied implementation. A mixed methods design was applied to explore adoption and use patterns, including background and disease-related data, qualitative data from a survey, and log data. Adoption was defined as the use of the app over a period of ≥90 days.; Results: Data from 112 participants and 98 caregivers were included. Shorter time from diagnosis (U=595; P=.046; r=0.19) and caregiver activating the app (P=.02) had a significant impact on the participant adoption status. Logistic regression analysis showed that if caregivers had activated the app, the participant was five times more likely to become an adopter (odds ratio 5.1, 95% CI 1.29-19.99; P=.02). However, the overall predictive power was low, and there was a wide variation in background and disease-related characteristics among adopters. The level of experience and skills in tablet use were not significantly different between adopters and nonadopters. Adopters generally rated the app high on usefulness, satisfaction, and ease of use (rated on the USEdem questionnaire). Their scores were significantly higher compared with nonadopters (U=5.5; P=.02; r=0.64). Analysis of use patterns showed that all functionalities of the app were used among adopters.; Conclusions: For participants who became adopters, the ReACT app and the methods for self-applied implementation were applicable. However, the results were also in accordance with the well-known challenges of nonadoption and nonadherence to digital health interventions. The study provided insight into the importance of timely introduction and caregiver support for adoption of AT among people with dementia. It also underlined the high complexity of personal and contextual factors that influence adoption. These complex factors need to be considered when designing and implementing AT for people with dementia.

Access source material through DOI

Systematic Review of Technology-Based Interventions Targeting Chronically Ill Adults and Their Caregivers

The purpose of this systematic review is to synthesize the study design features as well as the attributes and outcomes of technology-based health interventions targeting chronically ill adults and their family caregivers. Twenty papers representing 19 studies met the inclusion criteria. Various theoretical foundations or approaches guided the interventions in 11 studies. Interventions either aimed to support patient self-management and improve patient outcomes or enhance shared illness management and improve patient and caregiver outcomes. The interventions included educational, behavioral, and support components and were delivered using various technologies ranging from text messaging to using the Internet. Overall, patients and caregivers expressed improvements in self-management outcomes (or support) and quality of life. Interventions with a dyadic focus reported on interpersonal outcomes, with improvements noted mostly in patients. This review captures an emerging area of science, and findings should be interpreted in light of the methodological limitations of the included studies.

Access source material through DOI

Online training and support program (iSupport) for informal dementia caregivers: protocol for an intervention study in Portugal

Background: Informal caregivers (IC) of people with dementia (PwD) are at greater risk of developing physical and mental health problems when compared to the general population and to IC of people with other chronic diseases. Internet-based interventions have been explored for their potential to minimize the negative effects of caring, accounting for their ubiquitous nature, convenient delivery, potential scalability and presumed (cost) effectiveness. iSupport is a self-help online program developed by the World Health Organization (WHO) to provide education, skills training and support to IC of PwD. This paper describes the design of an intervention study aimed at determining the effectiveness of a Portuguese culturally adapted version of iSupport on mental health and other well-being outcomes.; Methods: The study follows an experimental parallel between-group design with two arms: access to the five modules and twenty-three lessons of "iSupport" for three months (intervention group); or access to an education-only e-book (comparison group). One hundred and eighty four participants will be recruited by referral from national associations. Inclusion criteria are: being 18 years or older and provide e-consent; being a self-reported non-paid caregiver for at least six months; of a person with a formal diagnosis of dementia; being skilled to use internet; and experience a clinically relevant level of burden (≥ 21 on Zarit Burden Interview) or depression or anxiety symptoms (≥ 8 on Hospital Anxiety and Depression Scale). Data is collected online, resorting to self-administered instruments, at baseline, 3 and 6 months after baseline. The primary outcome is caregiver burden, measured by the Zarit Burden Interview. Symptoms of depression and anxiety, quality of life, positive aspects of caregiving and general self-efficacy are secondary study outcomes. The data analysis will follow an Intention-to-treat (ITT) protocol.; Discussion: This protocol is an important resource for the many organizations in several countries aiming to replicate iSupport. Findings from this intervention study will offer evidence to bolster an informed decision making on scaling up iSupport as a new intervention program with minimal costs aimed at minimizing the psychological distress of IC of PwD in Portugal and elsewhere.; Trial Registration: ClinicalTrials.gov, NCT04104568. Registered 26 September 2019.;

Access source material through DOI

Online social support groups for informal caregivers of hospice patients with cancer

Purpose: Social support is an important factor in reducing caregiver burden, however, accessing social support via traditional means is often challenging for family caregivers of hospice patients. Online support groups may offer an effective solution. The present study sought to understand dynamics of online social support among family and other informal (e.g., friends) caregivers of hospice cancer patients in an online social support group. The primary aim of the study was to identify types of online social support and support-seeking behaviors, with a secondary aim to understand informal hospice caregivers’ preferences for social support. Method: Data used in this study were collected as part of a federally funded randomized clinical trial of an informal hospice cancer caregiver support intervention. Findings are based on directed and conventional content analysis of support group members' posts and comments—including text and images—and a sample of caregivers’ exit interviews. Results: Analyses demonstrated that the majority of online support provided by group members was emotional support, followed by companionship support, appraisal support, and informational support. Instrumental support was rarely provided. Support was primarily elicited in an indirect manner through self-disclosure and patient updates, with few overt requests for support. Conclusions: Findings suggest online social support groups can be a valuable resource for informal caregivers who are in need of emotional support and lack the ability to access face-to-face support groups. Clinical implications of this research to healthcare systems regarding the importance of incorporating nurses and other medical professionals as co-facilitators of online support groups are discussed. 

Access source material through DOI

medAR: An augmented reality application to improve participation in health‐care decisions by family‐based intervention

[...]I would like to revise his statement slightly, to read: ‘We acknowledge that family and significant others can play a significant role in the process of decision making in some patients from non‐Western or Western cultural backgrounds more or less.’ [my emphasis]. [...]we equally know that doctors do not fulfil the obligation of medical information provision from the perspective of Chinese patients. If a couple of users open the phone app medAR at the same time, one can experience AR through scanning the marker in another phone Then in family caregivers of cesarean section maternity, six participators (control group) received symptomatic treatment, normal health care and communication as usual, meanwhile they were compared with five participators (medAR group) who experienced medAR and received the same treatment as control group.

Access source material through DOI

"It's Like a Cyber-Security Blanket": The Utility of Remote Activity Monitoring in Family Dementia Care

Technologies have emerged that aim to help older persons with Alzheimer's disease and related dementias (ADRDs) remain at home while also supporting their caregiving family members. However, the usefulness of these innovations, particularly in home-based care contexts, remains underexplored. The current study evaluated the acceptability and utility of an in-home remote activity monitoring (RAM) system for 30 family caregivers of persons with ADRD via quantitative survey data collected over a 6-month period and qualitative survey and interview data collected for up to 18 months. A parallel convergent mixed methods design was employed. The integrated qualitative and quantitative data suggested that RAM technology offered ongoing monitoring and provided caregivers with a sense of security. Considerable customization was needed so that RAM was most appropriate for persons with ADRD. The findings have important clinical implications when considering how RAM can supplement, or potentially substitute for, ADRD family care.

Access source material through DOI

Feasibility of Tele-Prompt: A tablet-based prompted voiding intervention to support informal caregivers of older adults with urinary incontinence

Urinary incontinence (UI) is a highly prevalent condition, burdening older adults and their informal caregivers. This study explored the development and feasibility of a 6-week evidence-based, educational/skill building program delivered via tablet-personal computer aimed at developing informal caregiver UI knowledge; and enhancing informal caregiver skill set in prompted voiding and toileting strategies. Caregivers also received individualized weekly coaching sessions from a nurse expert. Feasibility and preliminary efficacy were tested in three caregiver/care-recipient dyads. Recruitment of eligible participants through community-based resources was a challenge to feasibility. Most caregivers found the technology acceptable, but adherence to prompted voiding was inconsistent. All caregivers rated the intervention highly, reported improvements in their care-recipient's urine leakage, found access to a UI expert beneficial, and would recommend it to a friend. The results suggest that the tablet-facilitated intervention was feasible and acceptable to informal caregivers and showed promise for improving both caregiver and care recipient outcomes.

Access source material through DOI

Elements of Social Convoy Theory in Mobile Health for Palliative Care: Scoping Review

Background: Mobile health (mHealth) provides a unique modality for improving access to and awareness of palliative care among patients, families, and caregivers from diverse backgrounds. Some mHealth palliative care apps exist, both commercially available and established by academic researchers. However, the elements of family support and family caregiving tools offered by these early apps is unknown.; Objective: The objective of this scoping review was to use social convoy theory to describe the inclusion and functionality of family, social relationships, and caregivers in palliative care mobile apps.; Methods: Using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Review guidelines, a systematic search of palliative care mHealth included (1) research-based mobile apps identified from academic searches published between January 1, 2010, and March 31, 2019 and (2) commercially available apps for app stores in April 2019. Two reviewers independently assessed abstracts, app titles, and descriptions against the inclusion and exclusion criteria. Abstracted data covered app name, research team or developer, palliative care element, target audience, and features for family support and caregiving functionality as defined by social convoy theory.; Results: Overall, 10 articles describing 9 individual research-based apps and 22 commercially available apps were identified. Commercially available apps were most commonly designed for both patients and social convoys, whereas the majority of research apps were designed for patient use only.; Conclusions: Results suggest there is an emerging presence of apps for patients and social convoys receiving palliative care; however, there are many needs for developers and researchers to address in the future. Although palliative care mHealth is a growing field, additional research is needed for apps that embrace a team approach to information sharing, target family- and caregiver-specific issues, promote access to palliative care, and are comprehensive of palliative needs.

Access source material through DOI

Caring Near and Far by Connecting Community-Based Clients and Family Member/Friend Caregivers Using Passive Remote Monitoring: Protocol for a Pragmatic Randomized Controlled Trial

Background: Significant chronic disease challenges exist among older adults. However, most older adults want to remain at home even if their health conditions challenge their ability to live independently. Yet publicly funded home care resources are scarce, private home care is expensive, and family/friend caregivers have limited capacity. Many older adults with chronic illness would require institutional care without the support from family member/friend caregivers. This role raises the risk of physical health problems, stress, burnout, and depression. Passive remote monitoring (RM), the use of sensors that do not require any action by the individual for the system to work, may increase the older adult's ability to live independently while also providing support and peace of mind to both the client and the family member/friend caregiver.; Objective: This paper presents the protocol of a study conducted in two provinces in Canada to investigate the impact of RM along with usual home care (the intervention) versus usual home care alone (control) on older adults with complex care. The primary outcome for this study is the occurrence of and time to events such as trips to emergency, short-term admission to the hospital, terminal admission to the hospital awaiting admission to long-term care, and direct admission to long-term care. The secondary outcomes for this study are (1) health care costs, (2) client functional status and quality of life in the home, (3) family/friend caregiver stress, and (4) family/friend caregiver functional health status.; Methods: The design for this study is an unblinded pragmatic randomized controlled trial (PRCT) with two parallel arms in two geographic strata (Ontario and Nova Scotia). Quantitative and qualitative methodologies will be used to address the study objectives. This PRCT is conceptually informed by the principles of client-centered care and viewing the family as the client and aims at providing supported self-management.; Results: This study is supported by the Canadian Institutes for Health Research. A primary completion date is anticipated in fall 2022.; Conclusions: Findings from this real-world rigorous randomized trial will support Canadian decision-makers, providers, and clients and their caregivers in assessing the health, well-being, and economic benefits and the social and technological challenges of integrating RM technologies to support older adults to stay in their home, including evaluating the impact on the burden of care experienced by family/friend caregivers. With an aging population, this technology may reduce institutionalization and promote safe and independent living for the elderly as long as possible.; Trial Registration: International Standard Randomised Controlled Trial Number (ISRCTN) 79884651; http://www.isrctn.com/ISRCTN79884651.; International Registered Report Identifier (irrid): DERR1-10.2196/15027.

Access source material through DOI

Effectiveness of health web-based and mobile app-based interventions designed to improve informal caregiver's well-being and quality of life: A systematic review

Background: Internet-based interventions can help empower caregivers of people with chronic diseases and can develop solutions to decrease the physical and psychological consequences resulting from caregiving. Objective: Analysing the effectiveness of health web-based and/or mobile app-based interventions with regard to the level of well-being and quality of life of informal caregivers in charge of people with chronic diseases. Materials and methods: Systematic review of the following databases: Pubmed, Apa PsycINFO, ProQuest Health & Medical Complete and Scopus. Quality standards established by PRISMA and Joanna Briggs Institute Systematic Review Approach have been followed. The two phases of the selection process were carried out independently and a cross-case comparative analysis by three reviewers. Results: A total of 17 studies met inclusion criteria. The analysis shows that almost all studies involved web-based interventions with the exception of one which concerned a mobile app-based intervention. Most of them prove their effectiveness in the overall well-being of the caregiver and more specifically in the mental dimension, highlighting a decrease in caregivers’ anxiety and/or distress, depression symptoms and sense of competence. Conclusions: The findings support that web-based interventions have an impact mainly on caregivers’ well-being. Nevertheless, other dimensions that are necessary for caregiving, such as physical, mental and social dimension, have been scarcely explored. More studies on mobile app-based interventions are needed to know their effectiveness. 

Access source material through DOI

Cloud and Internet of Things Technologies for Supporting In-House Informal Caregivers: A Conceptual Architecture

Persons in a situation of dependency, or independent but with deficiencies in their autonomy, have specific needs for a better management of their long-term care. New sensing technologies based on real-time location systems, mobile apps, the Internet-of-Things (IoT) paradigm and cloud systems can be used to collect and process information about their activity and their environment in a continuous and truthful way. In this chapter, we analyse current solutions available to support informal caregivers and propose an innovative framework based on the integration of existing IoT products and services of cloud architectures. From the technological point of view, the system we propose is focused on the integration and combination of technologies for providing support for the informal caregiver in long-term care. The differential factor of these technologies is the customization level according to the specific context of the end-users. The main contribution of the proposed systems relies on the intelligence and the management of recorded events to create complex and reliable alerts, and its ability to configure multiple end-user instances and configurations (e.g.: needs, countries, regions, cultures). These type of systems should be sustainable and efficient, and that is why the inclusion of cloud technologies can grant its flexibility and scalability. 

Access source material through DOI

An Informal Carer Hub to Support Carers Looking After COPD Patients in the UK and Netherlands

In the UK, about 3 million people live with Chronic Obstructive Pulmonary Disease (COPD). Informal carers such as family and friends play a vital role in promoting well-being among older adults suffering from COPD. However, difficulties experienced by caregivers are increasing and affecting their quality of life. New technologies and innovations such as m-health have the potential in reducing the burden of these carers. In this paper, we propose an informal carer hub (ICH), which is part of the WELCOME EU project to help informal carers better manage COPD patients in two European countries: the UK and the Netherlands. The acceptability of the system has been tested by making use of a modified version of the technology acceptance model (TAM 3). The aim of this study was to ensure that the proposed informal carer application is easy to learn, effective to use and acceptable from the informal carers’ perspectives. 

Access source material through DOI

Using telehealth in motor neuron disease to increase access to specialist multidisciplinary care: a UK-based pilot and feasibility study

Objectives: Care of patients with motor neuron disease (MND) in a specialist, multidisciplinary clinic is associated with improved survival, but access is not universal. We wanted to pilot and establish the feasibility of a definitive trial of a novel telehealth system (Telehealth in Motor neuron disease, TiM) in patients with MND.; Design: An 18-month, single-centre, mixed-methods, randomised, controlled pilot and feasibility study.; Intervention: TiM telehealth plus usual care versus usual care.; Setting: A specialist MND care centre in the UK.; Participants: Patients with MND and their primary informal carers.; Primary and Secondary Outcome Measures: Recruitment, retention and data collection rates, clinical outcomes including participant quality of life and anxiety and depression.; Results: Recruitment achieved the target of 40 patients and 37 carers. Participant characteristics reflected those attending the specialist clinic and included those with severe disability and those with limited experience of technology. Retention and data collection was good. Eighty per cent of patients and 82% of carer participants reported outcome measures were completed at 6 months. Using a longitudinal analysis with repeated measures of quality of life (QoL), a sample size of 131 per arm is recommended in a definitive trial. The methods and intervention were acceptable to participants who were highly motivated to participate to research. The low burden of participation and accessibility of the intervention meant barriers to participation were minimal. However, the study highlighted difficulties assessing the associated costs of the intervention, the challenge of recruitment in such a rare disease and the difficulties of producing rigorous evidence of impact in such a complex intervention.; Conclusion: A definitive trial of TiM is feasible but challenging. The complexity of the intervention and heterogeneity of the patient population means that a randomised controlled trial may not be the best way to evaluate the further development and implementation of the TiM.; Trial Registration Number: ISRCTN26675465.

Access source material through DOI

Using sensor-based technology for safety and independence - the experiences of people with dementia and their families

Background: The majority of people with dementia prefer to live independently and safely in their own home cared for by their family members. Much effort has been invested in the development of technology, such as sensor-based networks. Many challenges remain, in particular gaining more knowledge about their experiences and perceived benefits. This study aimed to explore experiences, needs and benefits with using sensor-based technology for safety and independence in the homes of people with dementia and their family members.; Methods: This study is part of the TECH@HOME project, aiming to evaluate the effects of sensor-based technology on independence among people with dementia and caregiver stress among their family members. This study applied an inductive, qualitative approach with semi-structured interviews of people with dementia (n = 9) and family members (n = 21). The participants were interviewed between June and September 2018 after using the technology for at least 6 months. The interviews were analysed with manifest content analysis.; Results: Our findings highlighted that technology was considered as a precaution and a safety measure that could provide a sense of having control of the everyday life of the person with dementia. Understanding and acceptance of the technology were as important, together with the reliability of the technology. Ethical dilemmas related to the monitoring of the person with dementia in the home were also raised.; Conclusion: This study provides insights into how people with dementia and family members experience and benefit from using sensor-based technology in their own homes. The knowledge generated is essential for healthcare professionals and policymakers developing and implementing care and service systems including technology, as well as for the industry.

Access source material through DOI

Typology of Technology-Supported Dementia Care Interventions From an In-Home Telehealth Trial

Identifying the needs of dementia caregivers is critical for supporting dementia home care. This study identified a typology of expert interventions delivered to dementia caregivers during an innovative telehealth trial that used in-home video recordings to directly observe care challenges. Qualitative content analysis was used to analyze narrative notes describing interventions that were developed based on video data submitted by 33 caregiver–care recipient dyads. Two major themes emerged: education and skills for dementia care and caregiver support. Ten subthemes included education and skills related to: behavioral and psychological symptoms of dementia, disease expectations, safety, activities of daily living, medical care optimization, and medication utilization and caregiver support related to: respite, positive reinforcement, social and financial support, and self-care. Families providing in-home dementia care experience a wide range of care challenges. By using video data, dementia care experts were able to witness and evaluate challenging care situations and provide individualized feedback. 

Access source material through DOI

Telephone-based behavioral activation intervention for dementia family caregivers: Outcomes and mediation effect of a randomized controlled trial

Objectives: The study examined the effects of a telephone-administered psycho-education with behavioral activation intervention (TBA) for family caregivers of person's with Alzheimer's dementia to reduce levels of depressive symptoms and burden and to enhance relationship satisfaction with the care-recipient METHODS: A double-blinded randomized trial compared TBA with telephone-based psycho-education with general monitoring (TGM). Ninety-six dementia caregivers were randomized. Both conditions received four weekly psycho-education sessions led by a social worker. TBA participants then received eight bi-weekly behavioral activation practice sessions delivered by paraprofessionals. TGM participants received eight bi-weekly monitoring sessions by paraprofessionals.; Results: As compared to TGM, TBA participants reported significantly larger reductions in depressive symptoms and burden and larger improvement in relationship satisfaction. Self-efficacy for controlling upsetting thoughts was found to have a partial meditation effect between TBA and the reduction of depressive symptoms. Qualitative feedback suggested that TBA participants expressed unique gains in awareness and developing new ways of reappraising the caregiving situation.; Conclusion: TBA was an effective intervention to reduce depressive symptoms and burden as well as to enhance relationship satisfaction in dementia caregivers.; Practice Implications: The use of telephone and trained paraprofessionals can enhance the accessibility and sustainability of behavioral activation intervention for dementia family caregivers.

Access source material through DOI

Telemedically augmented palliative care : Empowerment for patients with advanced cancer and their family caregivers

Background: Studies have shown that initiating early palliative care of patients with end-stage cancer can improve their quality of life and decrease symptoms of depression. The challenge is to find an effective way to care for these patients while minimizing the burden on healthcare resources. Telemedicine can play a vital role in solving this problem.; Methods: A user-friendly telemedical device enabling patients encountering medical problems to send a direct request to a palliative care team was developed. A controlled feasibility study was conducted by assigning 15 patients with advanced cancer and their family caregivers to receive either standard palliative care or telemedically augmented palliative care. Th quality of life (QoL) was assessed using standardized validated questionnaires as well as frequency and duration of hospital admissions and user satisfaction. The primary goal of this study was to increase the QoL of patients and their family caregivers. The secondary goal of this study was to decrease the frequency and duration of hospital admissions.; Results: This study showed a good feasibility despite the low overall willingness to participate in a relatively "technical" trial. The hospital anxiety and depression scale (HADS) was significantly lower in the intervention group, suggesting an improved quality of life. Although a decrease in the number of hospital admissions could not be shown, the user satisfaction was very good.; Conclusion: Telemedicine could be a useful tool to enhance the general well-being of palliative oncology patients. Now that the feasibility of this approach has been confirmed, larger studies are needed to verify its positive impact on the QoL.

Access source material through DOI

Supporting Family Caregivers With Technology for Dementia Home Care: A Randomized Controlled Trial

Background and Objectives: The number of persons living with dementia (PLWD) in the United States will reach 16 million by 2050. Behavioral and psychological symptoms of dementia challenge family caregivers and contribute to negative caregiver outcomes such as burden and depression. Available technology can support the delivery of effective interventions to families providing dementia care at home. The Supporting Family Caregivers with Technology for Dementia Home Care (FamTechCare) randomized controlled trial evaluated the effects of a telehealth intervention on caregiver outcomes.; Research Design and Methods: The FamTechCare intervention provides tailored dementia-care strategies to in-home caregivers based on video recordings caregivers submit of challenging care situations. An expert team reviews the videos and provides individualized interventions weekly for the experimental group. In the telephone-support attention control group, caregivers receive feedback from an interventionist via the telephone based on caregiver retrospective recall of care challenges. Effects of the intervention on caregiver outcomes, including burden, depression, sleep disturbance, competence, desire to institutionalize the PLWD, and caregiver reaction to behavioral symptoms were evaluated by fitting linear mixed regression models to changes in the outcomes measured at 1 and 3 months.; Results: FamTechCare caregivers (n = 42) had greater reductions in depression (p = .012) and gains in competence (p = .033) after 3 months compared to the attention control group (n = 41). Living in rural areas was associated with a reduction in depression for FamTechCare caregivers (p = .002). Higher level of education was associated with greater improvements or lesser declines in burden, competence, and reaction to behavioral symptoms for both the FamTechCare and attention control caregivers.; Discussion and Implications: This research demonstrated benefits of using available technology to link families to dementia care experts using video-recording technology. It provides a foundation for future research testing telehealth interventions, tailored based on rich contextual data to support families, including those in rural or remote locations.

Access source material through DOI

Secure Messaging with Physicians by Proxies for Patients with Diabetes: Findings from the ECLIPPSE Study

Background: Little is known about patients who have caregiver proxies communicate with healthcare providers via portal secure messaging (SM). Since proxy portal use is often informal (e.g., sharing patient accounts), novel methods are needed to estimate the prevalence of proxy-authored SMs.; Objective: (1) Develop an algorithm to identify proxy-authored SMs, (2) apply this algorithm to estimate predicted proxy SM (PPSM) prevalence among patients with diabetes, and (3) explore patient characteristics associated with having PPSMs.; Design: Retrospective cohort study.; Participants: We examined 9856 patients from Diabetes Study of Northern California (DISTANCE) who sent ≥ 1 English-language SM to their primary care physician between July 1, 2006, and Dec. 31, 2015.; Main Measures: Using computational linguistics, we developed ProxyID, an algorithm that identifies phrases frequently found in registered proxy SMs. ProxyID was validated against blinded expert categorization of proxy status among an SM sample, then applied to identify PPSM prevalence across patients. We examined patients' sociodemographic and clinical characteristics according to PPSM penetrance, "none" (0%), "low" (≥ 0-50%), and "high" (≥ 50-100%).; Key Results: Only 2.3% of patients had ≥ 1 registered proxy-authored SM. ProxyID demonstrated moderate agreement with expert classification (Κ = 0.58); 45.7% of patients had PPSMs (40.2% low and 5.5% high). Patients with high percent PPSMs were older than those with low percent and no PPSMs (66.5 vs 57.4 vs 56.2 years, p < 0.001) had higher rates of limited English proficiency (16.1% vs 3.2% vs 3.5%, p < 0.05), lower self-reported health literacy (3.83 vs 4.43 vs 4.44, p < 0.001), and more comorbidities (Charlson index 3.78 vs 2.35 vs 2.18, p < 0.001).; Conclusions: Among patients with diabetes, informal proxy SM use is more common than registered use and prevalent among socially and medically vulnerable patients. Future research should explore whether proxy portal use improves patient and/or caregiver outcomes and consider policies that integrate caregivers in portal communication.

Access source material through DOI

The role of internet-based digital tools in reducing social isolation and addressing support needs among informal caregivers: a scoping review

Background: In Canada, 8.1 million people informally provide care without payment, primarily to family members; 6.1 million of them are employed at a full-time or part-time job. Digital technologies, such as internet-based tools, can provide informal caregivers' access to information and support. This scoping review aimed to explore the role of internet-based digital tools in reducing social isolation and addressing support needs among informal caregivers.; Methods: A systematic search for relevant peer-reviewed literature was conducted of four electronic databases, guided by Arksey and O'Malley's framework. An extensive search for relevant grey literature was also conducted.; Results: The screening process yielded twenty-three papers. The following themes were generated from the reviewed studies: searching for and receiving support; gaining a sense of social inclusion and belonging; and benefits and challenges of web-based support. The studies noted that, to connect with peers and obtain social support, informal caregivers often turn to online platforms. By engaging with peers in online communities, these caregivers reported regaining a sense of social inclusion and belonging.; Conclusions: The findings suggest that internet-based digital tools can be a cost-effective and convenient way to develop programs that help unpaid caregivers form communities, gain support, and access resources. Service providers can leverage digital tools to deliver support to caregivers within online communities.

Access source material through DOI

Process Evaluation of Nurse-Led Online Self-Management Support for Family Caregivers to Deal With Behavior Changes of a Relative With Dementia (Part 1): Mixed Methods Study

Background: Coping with behavioral changes is a daily challenge for family caregivers in all phases of dementia, and assistance is needed for it. An online self-management support intervention was therefore developed and conducted involving the following elements: (1) email contact with a specialized dementia nurse, (2) online videos, and (3) e-bulletins containing information about behavior changes and how to manage them.; Objective: The aim of this study was to understand (1) family caregivers' actual use of various elements of the online self-management support, (2) family caregivers' evaluation and satisfaction with the various elements, and (3) nurses' usage and evaluations of the online support through the tailored email contacts.; Methods: A mixed methods design was used in this process evaluation, combining quantitative and qualitative methods including analyses of dementia nurses' registration forms, the number of clicks on online videos and e-bulletins, evaluation questions answered by family caregivers in a survey questionnaire, semistructured interviews with family caregivers and nurses, and analysis of the content of the email contacts.; Results: The actual use of various elements of the online self-management support by family caregivers varied: 78% (21/27) of family caregivers had an email contact with the specialist nurse, 80% (43/54) of family caregivers clicked on an online video, and 37% (30/81) clicked on an e-bulletin. Family caregivers showed positive evaluations and satisfaction. The tailor-made approach in the personal email contacts in particular was valued by the family caregivers. Nurses' evaluations about providing self-management support online were mixed as it was a relatively new task for them.; Conclusions: An important insight is that not all participants made optimum use of the various elements of the intervention. Nurses also said that the email contacts were more often used to express feelings about coping with behavioral changes. More research is needed to investigate the reasons why people accept, adopt, and adhere to online interventions to reduce cases where they are not used and to back them up appropriately with tailored (online) information and advice for their personal situations.

Access source material through DOI

A Pilot Trial of Online Training for Family Well-Being and Veteran Treatment Initiation for PTSD

Introduction: Family members are important supports for veterans with Posttrauamtic Stress Disroder (PTSD), but they often struggle with their own distress and challenges. The Veterans Affairs-Community Reinforcement and Family Training (VA-CRAFT) website was designed to teach family members of veterans with PTSD effective ways to interact with their veterans to encourage initiation of mental health services as well as to care for themselves and improve their relationships. This article presents a pilot investigation of VA-CRAFT.; Materials and Method: Spouse/partners of veterans who had screened positive for PTSD but were not in mental health treatment were randomized to either use the VA-CRAFT website (n = 22) or to a waitlist control condition (n = 19) for 3 months. Veteran mental health service initiation was assessed posttreatment. Spouse/partner distress, caregiver burden, quality of life, and relationship quality were assessed pre and posttreatment. The study was approved by the Minneapolis VA Health Care System Institutional Review Board (IRB).; Results: Differences between groups on veteran treatment initiation were small (Phi = 0.17) and not statistically significant. VA-CRAFT participants reported large and statistically significantly greater decreases in overall caregiver burden (η2 = 0.10) and objective caregiver burden (η2 = 0.14) than control participants. Effects were larger for those with greater initial distress. Effects sizes for other partner outcomes were negligible (η2 = 0.01) to medium (η2 = 0.09) and not statistically significant. Postintervention interviews suggested that only 33% of the VA-CRAFT participants talked with their veterans about starting treatment for PTSD during the trial.; Conclusion: Results from this pilot trial suggest that VA-CRAFT holds initial promise in reducing caregiver burden and as such it could be a useful resource for family members of veterans with PTSD. However, VA-CRAFT does not enhance veteran treatment initiation. It may benefit from enhancements to increase effectiveness and caregiver engagement.

Access source material through DOI

Patients' perspectives of multidisciplinary home-based e-Health service delivery for motor neurone disease

Purpose: To explore the views of people with motor neurone disease (MND) on the barriers, facilitators and potential benefits of using home-based e-Health service delivery (telehealth) to access MND multidisciplinary clinic care. Methods: Twelve patients from three MND multidisciplinary clinics and an MND support association group completed a survey of information technology (IT) use and participated in interviews, to gather participants' experiences and perceptions of home-based telehealth for MND clinic care. Survey data were analyzed descriptively, with interview data analyzed using a stepwise inductive approach. Results: Surveys revealed that participants used IT to communicate with family and friends, but were less likely to use the phone, email or videoconferencing with health professionals. Two themes of participants' use of IT in MND care reflected their experiences of MND care; and personal preferences for modes of healthcare delivery. Participants were willing to use telehealth for MND care, with family members acting as patients' main support for telehealth participation. Nevertheless, participants preferred face-to-face contact with the MND clinic team in the initial and early stages of the disease. Conclusions: People living with MND may wish to participate in individual care planning to facilitate their access to a variety of e-Health service modalities. Additionally, individual care planning may allow healthcare professionals to deliver e-Health-based care, such as telehealth, to increase the scope of care provided. Research to ascertain the views of health professionals and family members as co-participants in service delivery via telehealth is needed to fully assess the potential contribution of e-Health. People living with MND face a range of barriers to attending specialized multidisciplinary care, including fatigue, caregiver availability and logistical challenges to travel. Patients have indicated willingness to use e-Health applications to improve their access to care. Use of telehealth could expand service delivery to people with MND living long distances from multidisciplinary clinics, and increase the patient-centred focus of care by tailoring care planning. By offering telehealth services routinely, MND multidisciplinary clinics could also improve the quality and timelines of services offered.

Access source material through DOI

An Online Minimally Guided Intervention to Support Family and Other Unpaid Carers of People With Dementia: Protocol for a Randomized Controlled Trial

Background: About three-quarters of people with dementia live in their own homes, with help from family members and/or other unpaid carers, such as friends or neighbors. Often, unpaid carers themselves experience negative consequences, such as stress, burden, and symptoms of depression or anxiety. Research has shown that these consequences can be alleviated by psychosocial and psychological interventions. Moreover, there are indications that those interventions can be effective when offered online.; Objective: This paper describes the protocol of a randomized controlled trial (RCT) that will take place in the Netherlands to evaluate the effectiveness of iSupport, a minimally guided, internet-based intervention to improve carers' mental health and coping resources.; Methods: A superiority two-arm RCT comparing the effects of the online support program with a waiting list control condition will be carried out in the Netherlands. The iSupport intervention was developed by the World Health Organization and is based on cognitive behavioral therapy principles. It has five main themes divided into 23 lessons. Carers can pick and choose which lessons they want to complete. We aim to recruit 200 unpaid carers. The experimental group (n=100) will be provided with access to the intervention for 3 months following randomization; those in the waiting list control group (n=100) will be granted access to the intervention after 3 months. Assessments will be conducted at baseline (T0), 3 months after baseline (post intervention, T1), and 6 months after baseline (follow-up, T2). The primary outcome is perceived stress, measured by the Perceived Stress Scale. Secondary outcomes are symptoms of depression and anxiety, caregiver burden, sense of competence, self-efficacy, mastery, and carers' attitudes toward dementia and their person-centered approach (ie, to what extent carers tailor the provided care to the interest, needs, and history of the person with dementia).; Results: Recruitment for the trial started in January 2019. As of July 2019, we have enrolled 120 participants. Data collection is expected to be completed by March 2020. Once all the data have been collected, we will conduct the data analyses between April and May 2020. We aim to publish our results in a manuscript by June 2020.; Conclusions: Online interventions have shown promising results in improving the mental health of carers of people with dementia. Additionally, online interventions may overcome accessibility barriers. If successful, this intervention will have important potential for implementation as a public health intervention, since costs and support by trained staff are minimal.; Trial Registration: Netherlands Trial Register (NTL) NL6417; https://www.trialregister.nl/trial/6417.; International Registered Report Identifier (irrid): DERR1-10.2196/14106.; ©Ángel C Pinto-Bruno, Anne Margriet Pot, Annet Kleiboer, Rose-Marie Droes, Annemieke van Straten. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 10.10.2019.

Access source material through DOI

Needs of people with dementia and their informal caregivers concerning assistive technologies: A scoping review

Background and objective: Assistive technologies might be a suitable option for supporting people with dementia and their informal caregivers. To avoid "one-fits-all"-solutions and to design useful technologies, it is essential to consider the end-users' needs. The objective of this review was to examine the needs of people with dementia and their informal caregivers with regard to assistive technologies. Methods: We conducted a scoping review based on a comprehensive literature search in databases, handsearching, and free web searching. Additionally, we performed citation tracking of included studies. We included all types of study designs. Two researchers independently selected the studies. The results were thematically categorised by two researchers. Results: The search yielded 7160 references. 18 of 24 included studies were qualitative. The studies had been conducted in 13 different countries, mostly in Europe. The sample size ranged between two and 270 participants. Most of the studies involved people with dementia as well as informal caregivers. The analysis resulted in eleven themes. The themes could be assigned to three domains: "needed technologies", "characteristics of needed technologies", and "information about technologies". Conclusions: The results might guide future usage, development and research addressing end users' needs with regard to assistive technologies.

Access source material through DOI

A Mobile Health App (Roadmap 2.0) for Patients Undergoing Hematopoietic Stem Cell Transplant: Qualitative Study on Family Caregivers' Perspectives and Design Considerations

Background: Hematopoietic stem cell transplantation (HCT), also referred to as blood and marrow transplantation (BMT), is a high-risk, but potentially curative therapy for a number of cancer and noncancer conditions. BMT Roadmap (Roadmap 1.0) is a mobile health app that was developed as a family caregiver-facing tool to provide informational needs about the health status of patients undergoing inpatient HCT.; Objective: This study explored the views and perceptions of family caregivers of patients undergoing HCT and their input regarding further technology development and expansion of BMT Roadmap into the outpatient setting (referred to as Roadmap 2.0).; Methods: Semistructured qualitative interviews were conducted among 24 family caregivers. Questions were developed from existing literature coupled with prior in-depth observations and interviews in hospital-based settings to explore the study objectives. Participants were recruited during routine outpatient clinic appointments of HCT patients, and all interviews were conducted in the participants' homes, the setting in which Roadmap 2.0 is intended for use. A thematic analysis was performed using a consistent set of codes derived from our prior research. New emerging codes were also included, and the coding structure was refined with iterative cycles of coding and data collection.; Results: Four major themes emerged through our qualitative analysis: (1) stress related to balancing caregiving duties; (2) learning and adapting to new routines (resilience); (3) balancing one's own needs with the patient's needs (insight); and (4) benefits of caregiving. When caregivers were further probed about their views on engagement with positive activity interventions (ie, pleasant activities that promote positive emotions and well-being such as expressing gratitude or engaging in activities that promote positive thoughts, emotions, and behaviors), they preferred a "menu" of positive activities to help support caregiver health and well-being.; Conclusions: This study involved family caregivers as participants in the development of new components for Roadmap 2.0. Our research provided a further understanding of the many priorities that hematopoietic stem cell transplant family caregivers face while maintaining balance in their lives. Their schedules can often be unpredictable, even more so once the patient is discharged from the hospital. Our findings suggest that expanding Roadmap 2.0 into the outpatient setting may provide critical caregiver support and that HCT caregivers are interested in and willing to engage in positive activities that may enhance well-being and attenuate the stress associated with caregiving.; International Registered Report Identifier (irrid): RR2-10.2196/resprot.4918

Access source material through DOI

An Investigation of the Interaction Patterns of Peer Patrons on an Online Peer-Support Portal for Informal Caregivers of Alzheimer's Patients

Online peer support portals are an effective way for informal caregivers to obtain support from the comfort of their homes. Having realized a dearth of research focusing on users of healthcare peer-support portals, this study focused on top contributors, termed as 'peer patrons', on one such portal. In order to understand their contribution in helping caregivers cope with their situation and to investigate any unique patterns of interaction, a qualitative thematic analysis was carried out on 1405 openly available comments on an online peer support group for informal caregivers of Alzheimer's patients. The analysis revealed five themes related to content of peer patrons' interaction with other portal members - Advice provider, information source, shoulder to cry on, portal star, and caregiver advocate. An additional theme related to the structure of the responses by peer patrons was also uncovered. In order to explain their contribution to these portals, parallels were drawn between the Stress and Coping model as applied to Dementia caregivers to show that peer patrons may be contributing towards caregivers' coping mechanisms. 

Access source material through DOI

Informal Caregiver Decision-Making Factors Associated With Technology Adoption and Use in Home Healthcare: A Systematic Scoping Review

Technology systems to alleviate the burden of caregiving are increasing in use. The home is a unique place where chronic disease management is often performed by informal caregivers, yet how caregivers make decisions about adopting a specific technology has not been thoroughly explored. This systematic scoping review mapped evidence on decision-making factors associated with technology adoption and use by caregivers of patients receiving care at home. We followed the recommendations developed by members of the Joanna Briggs Institute. Four electronic databases (PubMed, Medline, CINAHL, and Embase) were searched using both medical subject headings (MeSH terms) and key words. A total of six papers were included for data synthesis. Factors such as information, comprehension, motivation, time, perceived burden, and perceived caregiving competency were found to affect adoption of technology. There are other factors uniquely springing from the patient and technology, as well as shared issues between caregivers and patient, and caregivers and technology. Although some factors depend on technology type and patient diagnosis, there were some common factors across the research. Those factors can be carefully considered in referring technology use for caregivers. More focused study in this underinvestigated area is much needed.

Access source material through DOI

Implementation and feasibility considerations of an avatar-based intervention for military family caregivers

Objective: Military family caregivers (MFCGs) are a growing population with well-being and quality of life (QOL) challenges. New technologies can help meet their needs while minimizing disruption to caregiving responsibilities. Preliminary research needs to address intervention implementation challenges before larger-scale efficacy studies are conducted. This study aimed to evaluate the feasibility of implementing an avatar-based intervention and preliminarily investigate outcomes.; Methods: One-hundred twenty-four MFCGs were recruited to participate in this feasibility study. Sixty-four MFCGs completed the intervention. Data were analyzed using repeated-measures analysis of variance to assess 3- and 6-month differences.; Results: Meeting the a priori goal of 50 MFCGs completing the program supported feasibility. Preliminary results indicated significant reductions in depression, anxiety, and somatic symptoms, and significant improvements in physical health and overall QOL.; Conclusions: Findings support for the feasibility of implementing an avatar-based intervention for MFCGs and present promising findings related to improving caregiver well-being and overall QOL.

Access source material through DOI

A feasibility study comparing a web‐based intervention to a workshop intervention for caregivers of adults with eating disorders

Objective: To assess for the validity of a future trial, the current feasibility study aimed to compare the feasibility and efficacy of a web‐ and workshop‐based education intervention for caregivers of adults with eating disorders. Methods: Psychoeducation was provided to caregivers, who were randomly assigned to a web or workshop condition. Independent samples t tests were conducted to analyse the between‐group effect sizes for intervention condition with regard to change over time. A random selection of participants from each intervention provided qualitative feedback about their experiences. Results: Overall, participants reported positive experiences in both education interventions. From baseline to the end of intervention, small between‐group effect sizes were observed for changes in caregiver accommodation, problem‐solving abilities, the quality of psychological health, and the quality of social relationships, favouring the web‐based intervention, and changes in expressed emotion in the family context, caregiver burden, perceived stress, and the quality of the environment, supporting the workshop intervention. Conclusions: There was a difference in initial feasibility of the web intervention. A future large‐scale trial of these interventions is supported by the results of this feasibility study.

Access source material through DOI

Family carers' perspectives of managing activities of daily living and use of mHealth applications in dementia care: A qualitative study

Aim: To examine the needs, barriers and challenges experienced by family carers of people with dementia concerning the management of their care recipients' functional disabilities, and their experiences and opinions of using mobile health (mHealth) applications in health information seeking.; Background: Functional disability is a significant problem among people with dementia and management can be challenging for family carers. Evidence suggests that mHealth applications can support knowledge needs of patients and families.; Design: A qualitative descriptive exploratory study.; Methodology: In-depth interviews were conducted with a purposive sample of family carers using a semi-structured interview guide. An inductive thematic analysis method was used. The COREQ reporting guideline was followed.; Results: Five spousal and five child carers participated in this study. Four key themes were identified: (a) Challenges faced that contribute to psychological distress and burden; (b) Essential role of support systems in dementia care; (c) Information and educational needs of family carers, and (d) Experiences and attitudes of mHealth applications as an educational and supportive resource.; Conclusion: Providing functional care is demanding, challenging and stressful, and leads to carer burden. The complexity of dementia is a barrier in the organisation of functional care and access to a support network is vital to care provision. The information needs of family carers can potentially be addressed through an mHealth application.; Relevance To Clinical Practice: This study provides important information on family carers' needs, and the barriers and challenges related to functional care for people with dementia. Findings from this study can assist nurses and other health professionals in the planning of educational and supportive programs for family carers. Furthermore, the use of mHealth applications could positively contribute to the delivery of these programs.

Access source material through DOI

Factors influencing engagement in an online support group for family caregivers of individuals with advanced cancer

Objective: To explore factors that influenced engagement in an online support group (OSG) for family caregivers of hospice patients with cancer. Design: Secondary qualitative data analysis. Sample: 58 family caregivers of hospice patients with advanced cancer. Methods: Template analysis of individual family caregiver interviews. Findings: Emotional isolation and caregiving downtime positively influenced engagement, while reluctance to share personal information, a short timeframe of participation in the OSG, and caregiving commitments were negatively influential. While the group facilitation and secure privacy settings of the OSG were viewed positively, reactions to the OSG platform and group tone were mixed. Information on pain and the dying process was found to be particularly engaging. Practice implications: Providers offering OSGs for family caregivers should maximize factors that promote meaningful member engagement, responding to changes in activity and tone over time.

Access source material through DOI

Factors associated with willingness to use eRehabilitation after stroke: A cross-sectional study among patients, informal caregivers and healthcare professionals

Objective: Despite the increasing availability of eRehabilitation, its use remains limited. The aim of this study was to assess factors associated with willingness to use eRehabilitation.; Design: Cross-sectional survey.; Subjects: Stroke patients, informal caregivers, health-care professionals.; Methods: The survey included personal characteristics, willingness to use eRehabilitation (yes/no) and barriers/facilitators influencing this willingness (4-point scale). Barriers/facilitators were merged into factors. The association between these factors and willingness to use eRehabilitation was assessed using logistic regression analyses.; Results: Overall, 125 patients, 43 informal caregivers and 105 healthcare professionals participated in the study. Willingness to use eRehabilitation was positively influenced by perceived patient benefits (e.g. reduced travel time, increased motivation, better outcomes), among patients (odds ratio (OR) 2.68; 95% confidence interval (95% CI) 1.34-5.33), informal caregivers (OR 8.98; 95% CI 1.70-47.33) and healthcare professionals (OR 6.25; 95% CI 1.17-10.48). Insufficient knowledge decreased willingness to use eRehabilitation among patients (OR 0.36, 95% CI 0.17-0.74). Limitations of the study include low response rates and possible response bias.; Conclusion: Differences were found between patients/informal caregivers and healthcare professionals. However, for both groups, perceived benefits of the use of eRehabilitation facilitated willingness to use eRehabilitation. Further research is needed to determine the benefits of such programs, and inform all users about the potential benefits, and how to use eRehabilitation.

Access source material through DOI

Personalisation, customisation and bricolage: how people with dementia and their families make assistive technology work for them

Assistive technologies (ATs) are being 'mainstreamed' within dementia care, where they are promoted as enabling people with dementia to age in place alongside delivering greater efficiencies in care. AT provision focuses upon standardised solutions, with little known about how ATs are used by people with dementia and their carers within everyday practice. This paper explores how people with dementia and carers use technologies in order to manage care. Findings are reported from qualitative semi-structured interviews with 13 people with dementia and 26 family carers. Readily available household technologies were used in conjunction with and instead of AT to address diverse needs, replicating AT functions when doing so. Successful technology use was characterised by 'bricolage' or the non-conventional use of tools or methods to address local needs. Carers drove AT use by engaging creatively with both assistive and everyday technologies, however, carers were not routinely supported in their creative engagements with technology by statutory health or social care services, making bricolage a potentially frustrating and wasteful process. Bricolage provides a useful framework to understand how technologies are used in the everyday practice of dementia care, and how technology use can be supported within care. Rather than implementing standardised AT solutions, AT services and AT design in future should focus on how technologies can support more personalised, adaptive forms of care.

Access source material through DOI

Family carer and professional perceptions of the use of telehealth methodology for behavioural support for people with intellectual/developmental disabilities in the uk

Introduction: The use of telehealth to provide behavioural services for people with intellectual/developmental disabilities (IDD) is increasing. However, there are no prospective evaluations of stakeholder perspectives relating to this, which may have implications for uptake of such services. This study aimed to identify factors influencing family carer and professional willingness to use telehealth for behavioural support in the UK. Methods: A Delphi consultation was conducted in four rounds with two panels (professionals and family carers), aiming to reach consensus on the most influential advantages and disadvantages/barriers to participant's willingness to use telehealth. Results: Thirty‐six and 22 items reached consensus as being influential for professionals and family carers respectively. Factors identified by each panel differed, with professionals focusing on the logistics of support whilst family carers highlighted factors relating to the quality of support. A common solution to the barriers identified related to combining in‐person and telehealth methodology. Implications: A range of factors were identified that are influential to professional and family carer willingness to use telehealth for behavioural support. These factors suggest advantages to maximise and barriers to overcome in order to increase uptake of telehealth services in this field.

Access source material through DOI

Caring for Alzheimer’s disease caregivers: A qualitative study investigating opportunities for exergame innovation

The number of informal caregivers for family members with Alzheimer’s Disease (AD) is rising dramatically in the United States. AD caregivers disproportionately experience numerous health problems and are often isolated with little support. An active lifestyle can help prevent and mitigate physical and psychological health concerns amongst AD caregivers. Research has demonstrated how pervasive exergames can encourage physical activity (PA) in the general population, yet little work has explored how these tools can address the significant PA barriers that AD caregivers face. To identify opportunities for design, we conducted semi-structured interviews and participatory design sessions with 14 informal caregivers of family members with AD. Our findings characterize how becoming an AD caregiver profoundly impacts one’s ability to be active, perspectives on being active, and the ways that exergames might best support this population. We discuss implications for design and how our findings challenge existing technological approaches to PA promotion. 

Access source material through DOI

Nurses striving to provide caregiver with excellent support and care at a distance: a qualitative study

BACKGROUND: In Norway, changes in life expectancy have led to increased attention to older people who are ageing at home, by means of home care services, adapted technology and informal caregivers. The caring situation has become difficult for many caregivers. The use of telecare has now offered them the possibility to receive support at home. The purpose of this study was to explore how nurses provide support and care at a distance, using a web camera and a web forum in a closed telecare network for caregivers to persons suffering from stroke and dementia. METHODS: The study had an explorative design with a qualitative approach. The data sources consisted of interviews with nurses and excerpts from posts in a closed telecare network. Content analysis was used to analyse the text from the interviews and the text from the web forum. RESULTS: The main theme, "Balancing asymmetric and symmetric relationships" described nurses' relationship with caregiver. Two categories, "Balancing personal and professional qualities" and "Balancing caregivers' dependence versus independence" were identified. The first describing the tension in their dialogue, the second describing how nurses provided the caregivers with a sense of security as well as strengthening them to master their daily lives. CONCLUSIONS: The nurses provided long distance support and care for the caregivers, by using computer-meditated communication. This communication was characterized by closeness as well as empathy. To strengthen the caregivers' competence and independence, the nurses were easy accessible and provided virtual supervision and support. This study increases the knowledge about online dialogues and relationship between nurses and caregivers. It contributes to knowledge about balancing in the relationship, as well as knowledge about bridging the gap between technologies and nursing care as potential conflicting dimensions. Maintenance of ethical principles are therefore critical to be aware of.

Access source material through DOI

Incorporating Community Partners, Family Caregiver Participants, an Interprofessional Researcher Team, and a Technology Company to Build and Evaluate an App

Family caregivers are the backbone of most health-care systems; intensively relied upon, yet their needs go mainly ignored. Technology has the potential to reach family caregivers and create accessible solutions to meet their complex needs. Creating a feasible, acceptable, and effective “app” requires the application of innovative qualitative methods. We combined methodologies including “agile methodology” that requires the continuous integration and involvement of the research team, caregiver participants, community partners, and a technology company, in our effort to develop the app. A “design thinking model” identified the first step to understand and empathize with caregivers while learning about the problem. We completed four focus groups with older adults to explore their needs and experiences. We discovered that caregivers have many roles and vary in their use of smartphone technology. They wanted reputable information, opportunities to stay close to their care receiver, and information on how to improve their abilities. We discovered unexpected themes and ideas to guide development of the app. Engaging the app developer and the community partner maintained the integrity of the agile methodology. We incorporated quantitative measures of depression and social support to provide evidence for the effectiveness of the app. The app has the potential to support family caregivers in real time and meet their needs in ways not yet readily available. Qualitative research can change the world. The need to listen, empathize, and understand the experience of the users of our research has never been greater.

Access source material through DOI

The project ENABLE Cornerstone randomized pilot trial: Protocol for lay navigator-led early palliative care for African-American and rural advanced cancer family caregivers

Background: Patients newly-diagnosed with advanced cancer often rely on family caregivers to provide daily support to manage healthcare needs and maintain quality of life. Early telehealth palliative care has been shown to effectively provide an extra layer of support to family caregivers, however there has been little work with underserved populations, especially African-Americans and rural-dwellers. This is concerning given the lack of palliative care access for these underserved groups. Study design: Single-site, small-scale pilot randomized controlled trial (RCT) of Project ENABLE (Educate, Nurture, Advise, Before Life Ends) Cornerstone, a lay navigator-led, early palliative care coaching intervention for family caregivers of African-American and rural-dwelling patients with newly-diagnosed advanced cancer. Family caregivers are paired with a trained lay navigator overseen by specialist palliative care clinicians and receive a series of brief in-person and telehealth sessions focusing on stress management and coping, caregiving skills and organization, getting help, self-care, and preparing for the future/advance care planning. This pilot trial is assessing acceptability of the intervention, feasibility of recruitment and data collection procedures, and preliminary efficacy compared to usual care on caregiver and patient quality of life and mood over 24 weeks. Conclusion: Once acceptability and feasibility are determined and issues addressed, the ENABLE Cornerstone intervention for underserved family caregivers of persons with advanced cancer will be primed for a fully powered efficacy RCT. Given its use of lay navigators and telehealth delivery, the intervention is potentially highly scalable and capable of overcoming many of the geographic, human resource, and cultural obstacles to accessing early palliative care support.

Access source material through DOI

Development of a Caregivers' Support Platform (Connected Health Sustaining Home Stay in Dementia): Protocol for a Longitudinal Observational Mixed Methods Study

Background: Dementia disease is a chronic condition that leads a person with dementia (PwD) into a state of progressive deterioration and a greater dependence in performing their activities of daily living (ADL). It is believed nowadays that PwDs and their informal caregivers can have a better life when provided with the appropriate services and support. Connected Health (CH) is a new technology-enabled model of chronic care delivery where the stakeholders are connected through a health portal, ensuring continuity and efficient flow of information. CH has demonstrated promising results regarding supporting informal home care and Aging in Place, and it has been increasingly considered by researchers and health care providers as a method for dementia home care management. Objective: This study aims to describe the development and implementation protocol of a CH platform system to support informal caregivers of PwDs at home. Methods: This is a longitudinal observational mixed methods study where quantitative and qualitative data will be combined for determining the utility of the CH platform for dementia home care. Dyads, consisting of a PwD and their informal caregiver living in the community, will be divided into 2 groups: the intervention group, which will receive the CH technology package at home, and the usual care group, which will not have any CH technology at all. Dyads will be followed up for 12 months during which they will continue with their traditional care plan, but in addition, the intervention group will receive the CH package for their use at home during 6 months (months 3 to 9 of the yearly follow-up). Further comprehensive assessments related to the caregiver's and PwD's emotional and physical well-being will be performed at the initial assessment and at 3, 6, 9, and 12 months using international and standardized validated questionnaires and semistructured individual interviews. Results: This 3-year funded study (2016-2019) is currently in its implementation phase and is expected to finish by December 2019. We believe that CH can potentially change the PwD current care model, facilitating a proactive and preventive model, utilizing self-management-based strategies, and enhancing caregivers' involvement in the management of health care at home for PwDs. Conclusions: We foresee that our CH platform will provide knowledge and promote autonomy for the caregivers, which may empower them into greater control of the care for PwDs, and with it, improve the quality of life and well-being for the person they are caring for and for themselves through a physical and cognitive decline predictive model. We also believe that facilitating information sharing between all the PwDs' care stakeholders may enable a stronger relationship between them, facilitate a more coordinated care plan, and increase the feelings of empowerment in the informal caregivers.

Access source material through DOI

eHealth interventions to support caregivers of people with dementia may be proven effective, but are they implementation-ready?

Objectives: A variety of health services delivered via the Internet, or “eHealth interventions,” to support caregivers of people with dementia have shown evidence of effectiveness, but only a small number are put into practice. This study aimed to investigate whether, how and why their implementation took place. Methods: This qualitative study followed up on the 12 publications included in Boots et al.'s (2014) widely cited systematic review on eHealth interventions for informal caregivers of people with dementia, in order to explore further implementation into practice. Publicly available online information, implementation readiness (ImpRess checklist scores), and survey responses were assessed. Findings: Two interventions were freely available online, two were available in a trial context, and one was exclusively available to clinical staff previously involved in the research project. The remaining seven were unavailable. All scores on the ImpRess checklist were at 50% or lower of the total, indicating that the interventions were not ready to implement at the time of the Boots et al. (2014) review, though some interventions were scored as more implementation-ready in subsequent follow-up publications. Responses to the survey were received from six out of twelve authors. Key learnings from the survey included the importance of the involvement of stakeholders at all stages of the process, as well as the flexible adaptation and commercialization of the intervention. Conclusions: In general, low levels of implementation readiness were reported and often the information necessary to assess implementation readiness was unavailable. The only two freely available interventions had long-term funding from aging foundations. Authors pointed to the involvement of financial gatekeepers in the development process and the creation of a business model early on as important facilitators to implementation. Future research should focus on the factors enabling sustainable implementation.

Access source material through DOI

Older adult caregivers of their spouses with acquired late-life disability: examining the effectiveness of an internet-based meditation program in mitigating stress and promoting wellbeing

This article reports a study examining the impact of an internet-based meditation program in mitigating stress and promoting wellbeing among older adult caregivers of their spouses with acquired late-life disability in Central Europe and South Asia compared to leisure. Posttest (T2) the meditation cohort exhibited lower caregiver burden and psychological distress, improved responses to care challenges, and greater wellbeing compared to the leisure group. South Asians, women, middle class, college educated, whose spouses had locomotor and sensory disabilities and lived as a couple alone, reported lesser caregiving burden, improved responses to care challenges, lesser distress and greater wellbeing at T2. Meditation lessons attended and self-practice mediated the relationship between demographic predictors and outcomes and self-practice had the largest positive impact. Meditation influenced certain aspects of caregiver wellbeing more such as self-care and certain specific aspects of wellbeing. Internet-based caregiver interventions are evidence as useful for social work with older caregivers.

Access source material through DOI

Web-based interventions to improve mental health in home caregivers of people with dementia: Meta-analysis

Background: Dementia is a major cause of disability and dependency in older adults worldwide. It is often accompanied by general psychological distress, such as depression and anxiety symptoms, among caregivers of people with dementia (PwD). The physical and mental health of the caregiver is a prerequisite and a promise to help PwD continue to live as long and as well as possible. Web-based interventions can provide convenient and efficient support and an education tool to potentially reduce the negative outcomes associated with providing care. Objective: The aim of this study was to examine the effect of internet-based interventions on the mental health outcomes of family caregivers of PwD and to explore which components of the Web-based interventions play an important role. Methods: A comprehensive literature search was conducted in PubMed, Excerpta Medica dataBASE, PsycINFO, Cochrane Database, and the Cumulative Index to Nursing and Allied Health Literature using relevant terms such as Web-based and caregiver as keywords, covering all studies published before June 2018. A total of 2 reviewers independently reviewed all published abstracts, according to established inclusion and exclusion criteria. We extracted information about the participants, interventions, and results and reviewed article quality in terms of the randomized trial methods, using the approach recommended by the Cochrane Handbook for Systematic Reviews of Interventions. Results: A total of 815 caregivers participated in 6 studies, with 4 of the studies using depression as an outcome. The analysis found that depression scores dropped an average of 0.23 (95% CI -0.38 to -0.07; P<.01) after Web-based interventions. In 2 studies of caregivers who were experiencing anxiety symptoms, the average score for anxiety dropped by 0.32 points (95% CI -0.50 to -0.14; P<.01). However, in terms of coping, pain, and stress, the Web-based interventions showed a poor effect. On the whole, the addition of professional psychological support on the basis of education can improve caregivers' mental health. Conclusions: Internet-based interventions were generally effective at reducing anxiety and depression in dementia caregivers, although negative results were found in some studies. As for burden and stress, further research is required. 

Access source material through DOI

Extending a Knowledge-Based System with Learning Capacity

Informal caregivers often complain about missing knowledge. A knowledge-based personalized educational system is developed, which provides caregiving relatives with the information needed. Yet, evaluation against domain experts indicated, that parts of the knowledge-base are incorrect. To overcome these problems the system can be extended by a learning capacity and then be trained further utilizing feedback from real informal caregivers. To extend the existing system an artificial neural network was trained to represent a large part of the knowledge-based approach. This paper describes the found artificial neural network's structure and the training process. The found neural network structure is not deep but very wide. The training terminated after 374.700 epochs with a mean squared error of 7.731 ∗ 10-8 for the end validation set. The neural network represents the parts of the knowledge-based approach and can now be retrained with user feedback, which will be collected during a system test in April and May 2019.

Access source material through DOI

How to improve eRehabilitation programs in stroke care? A focus group study to identify requirements of end-users

Background: A user-centered design approach for eHealth interventions improves their effectiveness in stroke rehabilitation. Nevertheless, insight into requirements of end-users (patients/informal caregivers and/or health professionals) for eRehabilitation is lacking. The aim of this study was to identify end-user requirements for a comprehensive eHealth program in stroke rehabilitation. Methods: Eight focus groups were conducted to identify user requirements; six with patients/informal caregivers and two with health professionals involved in stroke rehabilitation (rehabilitation physicians, physiotherapists, occupational therapists, psychologists, team coordinators, speech therapist). The focus groups were audiotaped and transcribed in full. Direct content analysis was used to identify the end-user requirements for stroke eHealth interventions concerning three categories: accessibility, usability and content. Results: In total, 45 requirements for the accessibility, usability and content of a stroke eRehabilitation program emerged from the focus groups. Most requirements concerned content (27 requirements), followed by usability (12 requirements) and accessibility (6 requirements). Patients/informal caregivers and health professionals each identified 37 requirements, respectively, with 29 of them overlapping. Conclusions: Requirements between stroke patients/informal caregivers and health professionals differed on several aspects. Therefore, involving the perspectives of all end users in the design process of stroke eRehabilitation programs is needed to achieve a user-centered design. Trial registration: The study was approved by the Medical Ethical Review Board of the Leiden University Medical Center [P15.281].

Access source material through DOI

Virtual Patient Interaction via Communicative Acts

In the context of assisting informal caregivers of Alzheimer Disease patients, this article presents the design and preliminary implementation of a serious game in which two agents a user-controlled caregiver and a virtual patient communicate via specifically-designed dialog acts, reflecting both pedagogically appropriate and inappropriate behaviors. 

Access source material through DOI

Multi-part quality evaluation of a customized mobile application for monitoring elderly patients with functional loss and helping caregivers

Background: The challenges faced by caregivers of the elderly with chronic diseases are always complex. In this context, mobile technologies have been used with promising results, but often have restricted functionality, or are either difficult to use or do not provide the necessary support to the caregiver - which leads to declining usage over time. Therefore, we developed the Mobile System for Elderly Monitoring, SMAI. The purpose of SMAI is to monitor patients with functional loss and to improve the support to caregivers' communication with the health team professionals, informing them the data related to the patients' daily lives, while providing the health team better tools. Method: SMAI is composed of mobile applications developed for the caregivers and health team, and a web portal that supports management activities. Caregivers use an Android application to send information and receive care advice and feedback from the health team. The system was constructed using a refinement stage approach. Each stage involved caregivers and the health team in prototype release-test-assessment-refinement cycles. SMAI was evaluated during 18 months. We studied which features were being used the most, and their use pattern throughout the week. We also studied the users' qualitative perceptions. Finally, the caregiver application was also evaluated for usability. Results: SMAI functionalities showed to be very useful or useful to caregivers and health professionals. The Focus Group interviews reveled that among caregivers the use of the application gave them the sensation of being connected to the health team. The usability evaluation identified that the interface design and associated tasks were easy to use and the System Usability Scale, SUS, presented very good results. Conclusions: In general, the use of SMAI represented a positive change for the family caregivers and for the NAI health team. The overall qualitative results indicate that the approach used to construct the system was appropriate to achieve the objectives. 

Access source material through DOI

Informal carers' experience of assistive technology use in dementia care at home: A systematic review

Background: Dementia is a health and care priority globally. Caring for persons with dementia is a challenge and can lead to negative psychological, physiological and financial consequences for informal carers. Advances in technology have the potential to assist persons with dementia and their carers, through assistive technology devices such as electronic medication dispensers, robotic devices trackers and motion detectors. However, little is known about carers' experience and the impact of these technologies on them. This review aims to investigate the outcomes and experience of carers of persons with dementia, who live at home and use assistive technology. Methods: A systematic search in seven databases and manual searches were carried out using pre-defined inclusion and exclusion criteria to identify studies on carers of persons with dementia involving the use of assistive technology. The search identified 56 publications with quantitative, qualitative and mixed-method designs. Results: The studies reported positive and negative findings and focused on a wide variety of assistive technology devices. There were large differences in the uses of assistive technology, outcome measures used and the quality of studies. Knowledge and acceptance, competence to use and ethical issues when using assistive technology were themes that emerged from the studies. Carers generally appreciated using assistive technology and their experience of use varied. Conclusions: The intention of this systematic review is to list and classify the various types of assistive technology used by carers of persons with dementia and explores the positive and negative aspects, knowledge, acceptance and ethical issues in the use of assistive technology by carers of persons with dementia. We recommend the use of a standard and person-centred system of classifying and naming assistive technology devices and systems and for future research efforts in assistive technology to incorporate a family/carer centred model. Systematic review registration: PROSPERO - CRD42017082268.

Access source material through DOI

Usability evaluation of an eHealth intervention for family carers of individuals affected by psychosis: A mixed-method study

Background: Existing research suggests that eHealth interventions targeting family carers of individuals with long-term illness offer a promising approach to care delivery. In particular, digital psychoeducational interventions with interactive psychosocial support are well-received with high rates of satisfaction and acceptability. However, development of such interventions for psychosis carers is lacking. We developed a multi-component eHealth intervention specifically for carers of individuals affected by psychosis, called COPe-support (Carers fOr People with Psychosis e-support). Objective: Using mixed methods to evaluate usability, system heuristics and perceived acceptability, we conducted a usability study to establish the suitability of the intervention prototype for the target user group. Methods: Twenty-three carers were recruited to the study and participated in a think-aloud test or a remote online trial of the intervention. Qualitative feedback, post-use System Usability Scale (SUS) scores, and real-world usage data collected from the tests were analysed. These were also supplemented with heuristic evaluation data provided by an independent eLearning technology expert. Results: Participants evaluated the intervention content as useful and helpful, and indicated that the system had satisfactory usability with a mean SUS score of 73%, above the usability quality benchmark threshold. Study results identified some minor usability issues, which were corroborated with the eLearning expert’s heuristic evaluation findings. We used these results to refine the COPe-support intervention. Conclusions: The usability study with end-users and service providers identified real-life usage and usability issues. The study results helped us refine COPe-support and its delivery strategy before its launch as part of a large-scale clinical trial. 

Access source material through DOI

Offspring Caregivers of Chinese Women with Breast Cancer: Their Social Support Requests and Provision on Social Media

Background: Although a number of studies have examined social support needs among women with breast cancer, little attention has been paid to the burden and needs for social support among their family caregivers, who often report mental and physical problems associated with caregiving. Objective: This study aims to examine the role of social media in providing social support for offspring caregivers of breast cancer patients. Methods: A peer support group, "Having a breast cancer patient in my family," was created on Douban (www.douban.com), one of China's most popular social media sites, to provide social support to family caregivers of women with breast cancer. We analyzed the content of 784 messages in the discussion threads where the latest update fell between January 2017 and July 2017. Results: The results revealed that the majority of messages (n = 690, 88.0%) provided or requested social support, and more than 64.5% of these messages (n = 445) were posted by caregivers who were offspring of the cancer patients. The results also suggested that these caregivers requested and provided informational support more frequently than they did emotional and instrumental support. Conclusions: This study suggests that social media could be a plausible platform for offspring caregivers of breast cancer patients to share caregiving experiences, access informational resources for their care recipients, gain knowledge about breast cancer prevention, and obtain emotional encouragement. Theoretical as well as practical implications are discussed.

Access source material through DOI

Increasing Caregiver Access to Programming: A Qualitative Exploration of Caregivers' Experience of a Telehealth Powerful Tools for Caregivers Program

Family caregivers can benefit from education-based wellness programs, but many face barriers to attending such programs. The purpose of this research was to explore telehealth as a delivery format for an education-based caregiver wellness program. This qualitative research examined the caregiver experience of a specific program called Powerful Tools for Caregivers (PTC). The traditionally in-person program was delivered via telehealth in four states. Twelve caregivers participated in focus groups the week after completing the telehealth PTC program. Three major themes emerged from the focus groups: Knowledge Gained, Interrelatedness, and Technology Pros and Cons. All affirmed a positive experience of the telehealth delivered PTC program. Participants expressed gratitude for the opportunity to participate in the program and knowledge gained including relaxation techniques, communication skills, resources to support caregiving, and goal setting for self-care. Furthermore, participants were appreciative of the opportunity to connect with other caregivers from the comfort of their home.

Access source material through DOI

Development of an eHealth information resource for family carers supporting a person receiving palliative care on the island of Ireland

Background: Many people receiving palliative care wish to die at home. Often, support from family or friends is key to ensuring that this wish is fulfilled. However, carers report feeling underprepared to undertake this role. This paper describes the process of developing a consensus and evidence based website to provide core information to help people support someone receiving palliative care on the island of Ireland. Methods: The project comprised three phases: (1) a review of systematic reviews facilitated the identification of core information needs; (2) content was developed in collaboration with a Virtual Reference Group (VRG) comprising patients, carers and professionals; and, (3) subject experts within the project team worked with a web developer to précis the agreed content and ensure it was in a format that was appropriate for a website. Members of the VRG were then invited to test and approve the website before it was made available to the general public. Results: Nineteen systematic reviews identified nine consensus areas of core information required by carers; a description of palliative care; prognosis and treatment of the condition; medication and pain management; personal care; specialist equipment; locally available support services; what to do in an emergency; nutrition; and, support for the carer. This information was shared with the VRG and used to develop website content. Conclusions: We engaged with service users and professionals to develop an evidence-based website addressing the agreed core information needs of non-professional carers who wish to provide palliative care to a friend or relative. 

Access source material through DOI

Health coaching to improve self-care of informal caregivers of adults with chronic heart failure – iCare4Me: Study protocol for a randomized controlled trial

Background: Persons with chronic heart failure are living longer. These patients typically live in the community and are cared for at home by informal caregivers. These caregivers are an understudied and stressed group. Methods: We are conducting a two-arm, randomized controlled trial of 250 caregivers of persons with chronic heart failure to evaluate the efficacy of a health coaching intervention. A consecutive sample of participants is being enrolled from both clinic and hospital settings at a single institution affiliated with a large medical center in the northeastern US. Both the intervention and control groups receive tablets programmed to provide standardized health information. In addition, the intervention group receives 10 live coaching sessions delivered virtually by health coaches using the tablets. The intervention is evaluated at 6-months, with self-care as the primary outcome. Cost-effectiveness of the intervention is evaluated at 12-months. We are also enrolling heart failure patients (dyads) whenever possible to explore the effect of caregiver outcomes (self-care, stress, coping, health status) on heart failure patient outcomes (number of hospitalizations and days in the hospital) at 12-months. Discussion: We expect the proposed study to require 5 years for completion. If shown to be efficacious and cost-effective, our virtual health coaching intervention can easily be scaled to. support millions of caregivers worldwide.

Access source material through DOI

mHealth applications as an educational and supportive resource for family carers of people with dementia: An integrative review

Family carers encounter several challenges related to caring for people with dementia, and they need support in managing care recipients’ health needs. This study aims to identify, appraise and synthesise the existing evidence on the use of mHealth/smartphone applications as an educational and supportive resource for family carers of people with dementia. An integrative literature review approach was used. Seven databases were searched. The search generated 117 articles, with seven meeting the inclusion criteria. Three categories and their attendant sub-categories emerged from the literature. The categories are ‘carer support’, ‘evaluation strategies’ and ‘barriers and challenges’. mHealth applications appear to be a feasible intervention for family carers of people with dementia despite the limited available research and barriers for their development and implementation. Further research on mHealth applications with strong methodological rigour and more research on mHealth applications as an educational and supportive resource for carers of people with dementia are needed.

Access source material through DOI

The design and methodology of a usability protocol for the management of medications by families for aging older adults

BACKGROUND: Health research apps often do not focus on usability as a design priority. This is problematic when the population of interest is disproportionately underrepresented as users of mobile apps, especially observed with aging older adults (> = 75). Challenges with the adoption of health information technology (HIT) among this group are exacerbated by poor design and user interface/experience (UI/UX) choices. This protocol describes the testing and evaluation process of one HIT app for the family-based collaboration platform InfoSAGE. METHODS: We aim to recruit twenty subjects from both informal family-caregivers and aging older adults to examine the usability of the InfoSAGE mobile medication manager. Participants will be audio and visually recorded, in addition to the use of screen capture recordings, while 'thinking aloud' as they complete eight common use-case scenarios. Multiple independent reviewers will code video and audio recordings for thematic analysis and use problems will be evaluated. Success and failure of each scenario will be determined by completion of sub-events. Time-to-complete analysis will be used to ascertain the learning curve associated with the app. DISCUSSION: Frequently observed problem areas will be used as the basis of further evolution of the app, and will further inform generalized recommendations for the design of HIT apps for research and public use. This study aims to improve the model of development for dual user populations with dissimilar technological literacy to improve retention and use. Results of this study will form the foundation of a design framework for mobile health apps.

Access source material through DOI

iSupport: a WHO global online intervention for informal caregivers of people with dementia

The development of iSupport was funded by a grant from the Alzheimer Association US, the Ministry of Health, Welfare and Sport in the Netherlands, and Alzheimer Disease International. The authors alone are responsible for the views expressed in this letter and they do not necessarily represent the views, decisions or policies of the institutions with which they are affiliated. The iSupport development team included E. Albanese, N. Batsch, U. Baruah, K. Edwards, K. Egan, D. Gallagher‐Thompson, M. Guerra, J. Holroyd‐Leduc, T. Kwok, K. Mehta, M. Prins, S. Loganathan, I. Rosier, P. Shivakumar, I. van Asch, M. Varghese, H. Wang, B. Willemse, M. Wortmann and L. Xiao. The WHO Secretariat included A. Brunier, K. Carswell, T. Dua, A.M. Pot, D. Rekve, K. Seeher, M. van Ommeren, S. Saxena and D. Zandi.

Access source material through DOI

Incorporating Facebook into Nonprofit Supports for Family Caregivers: Reflections on its Value and Relevance

Social media has a role in the lives of many family carers. We present a case study of Facebook (FB) use in Care Alliance Ireland, a small Irish not-for-profit carer support organization. In 2012, in its role as coordinator of National Carers Week, Care Alliance Ireland set up a Facebook page to increase reach and awareness of the week amongst family caregivers who used Facebook. Philanthropic donations in the early years of FB use enabled the large-scale and relatively efficient recruitment of followers through targeted social media ads. By July 2018, the organization’s FB page had secured upwards of 18,500 followers, over 75% of whom report as being either current or former family carers. This article posits that regular, considered, and varied posts offer a level of support and affirmation for the caring role that has a large reach, is cost effective, and represents an effective quasi-social work intervention. 

Access source material through DOI

Randomized controlled trial of a facilitated online positive emotion regulation intervention for dementia caregivers

Objective: To test the effects of Life Enhancing Activities for Family Caregivers (LEAF), a 6-week positive emotion regulation intervention, on outcomes of positive emotion, depression, anxiety, and physical health as measured by the Patient-Reported Outcomes Measurement Information System® (PROMIS®). Method: A randomized controlled trial (N 170) comparing LEAF (N 86) to an emotion reporting/waitlist condition (N 84) in dementia caregivers. LEAF was individually delivered online by trained facilitators. Participants in the control condition completed daily online emotion reports and then crossed over into the intervention condition after 6 weeks. The study was registered with Clinicaltrials. gov (NCT01825681) and funded by R01NR014435. Results: Analyses of difference in change from baseline to 6 weeks demonstrated significantly greater decreases in PROMIS® depression (d <.25; p.02) and Quality of Life in Neurological Disorders (NeuroQOL) anxiety (d <.33; p-.01), as well as improvements in PROMIS® physical health (d.24; p.02) in the intervention condition compared to the emotion reporting/waitlist control. The intervention also showed greater improvements in positive emotion (d.58; p-.01) and positive aspects of caregiving (d.36; p-.01). Increases in positive emotion significantly mediated the effect of LEAF on depression over time. Conclusions: This randomized controlled trial of the online-facilitated positive emotion regulation intervention in dementia caregivers demonstrated small to medium effect sizes on caregiver well-being and shows promise for remotely delivered programs to improve psychological well-being in caregivers of people with dementia and other chronic illnesses. 

Access source material through DOI

An evaluation of the suitability, readability, quality, and usefulness of online resources for family caregivers of patients with cancer

Objective: Evaluate the suitability, readability, quality, and usefulness of publicly available online resources for cancer caregivers. Methods: Resources identified through a Google search and environmental scan were evaluated using the Suitability Assessment of Materials (SAM), an online readability text analysis tool, the DISCERN (quality), and caregivers' unmet needs checklist (usefulness). Descriptive analyses and cluster analysis to identify the group of resources with the highest SAM and DISCERN scores were performed. Results: 55 resources were evaluated. The suitability of 48/55 (87%) resources were categorized as adequate (SAM scores 40–69), with no resources ranking in the superior category (SAM scores > 70%). The readability of 51/55 (93%) resources exceeded 9th grade reading level. The mean quality score as a percentage was 49% (SD 11.5). On average resources addressed 9.9/33 unmet needs (SD = 5.8). A high-quality cluster was identified and included 15 (27%) websites. Conclusion: Online resources for cancer caregivers are not optimal in terms of their suitability, readability, quality, and usefulness. The highest ranked resources include, Cancer Council Australia's booklet, Caring for Someone with Cancer, and the American Cancer Society's webpages, Caregivers and Families. Practice implications: Study findings will allow healthcare professionals to better address cancer caregivers’ needs by recommending the most optimal resources. 

Access source material through DOI

Online information and support for carers of people with young-onset dementia: A multi-site randomised controlled pilot study

OBJECTIVES: The European RHAPSODY project sought to develop and test an online information and support programme for caregivers of individuals diagnosed with young onset dementia. The objectives were to assess user acceptability and satisfaction with the programme and to test outcome measures for a larger effectiveness study. DESIGN: A pilot randomised controlled trial in England, France, and Germany was conducted with 61 caregivers for adults with young onset Alzheimer's disease or frontotemporal degeneration. Evaluations at baseline, week 6, and week 12 assessed user acceptability and satisfaction. Use of the programme was measured from online back-end data. Qualitative feedback on user experiences was collected via semi-structured interviews. Measures of caregiver well-being (self-efficacy, stress, burden, frequency of patient symptoms, and caregiver reactions) were explored for use in a subsequent trial. RESULTS: Participants logged in online on average once a week over a 6-week period, consulting approximately 31% of programme content. Seventy percent of participants described the programme as useful and easy to use. Eighty-five percent expressed intent to use the resource in the future. Reductions in reported levels of stress and caregivers' negative reactions to memory symptoms were observed following use of the programme. CONCLUSIONS: Results indicated that the RHAPSODY programme was acceptable and useful to caregivers. The programme may be complementary to existing services in responding to the specific needs of families affected by young onset dementia. Distribution of the programme is underway in England, France, Germany, and Portugal.

Access source material through DOI

Evaluating User Engagement with a Reminiscence App Using Cross-Comparative Analysis of User Event Logs and Qualitative Data

The aim of this study was to evaluate the usage of a reminiscence app by people living with dementia and their family carers, by comparing event log data generated from app usage alongside the qualitative experience of the process. A cross-comparative analysis of electronic event logging data with qualitative interview data was conducted. Electronic event logging data were obtained for 28 participating dyads (n = 56) and the interview sample comprised 14 people living with dementia and 16 family carers (n = 30). A thematic analysis framework was used in the analysis of interview transcripts and the identification of recurrent themes. The cross-comparison of electronic event log data and qualitative data revealed 25 out of 28 dyads regularly engaged with a reminiscence app, with the analysis of usage patterns revealing four clusters classifying different levels of user engagement. The cross-comparison of data revealed that the nature of the relationship was a significant factor in ongoing user engagement. The comparative analysis of the electronic event logs as "ground truth" in combination with the qualitative lived experience can provide a deeper understanding on the usage of a reminiscence app for those living with dementia and their family carers. This work not only shows the benefits of using automated event log data mining but also shows its clear limitations without using complementary qualitative data analysis. As such, this work also provides key insights into using mixed methods for evaluating human-computer interaction technologies.

Access source material through DOI

Recruitment of caregivers into health services research: Lessons from a user-centred design study

Background: With patient and public engagement in many aspects of the healthcare system becoming an imperative, the recruitment of patients and members of the public into service and research roles has emerged as a challenge. The existing literature carries few reports of the methods – successful and unsuccessful – that researchers engaged in user-centred design (UCD) projects are using to recruit participants as equal partners in co-design research. This paper uses the recruitment experiences of a specific UCD project to provide a road map for other investigators, and to make general recommendations for funding agencies interested in supporting co-design research. Methods: We used a case study methodology and employed Nominal Group Technique (NGT) and Focus Group discussions to collect data. We recruited 25 family caregivers. Results: Employing various strategies to recruit unpaid family caregivers in a UCD project aimed at co-designing an assistive technology for family caregivers, we found that recruitment through caregiver agencies is the most efficient (least costly) and effective mechanism. The nature of this recruitment work – thetimeandcompromises it requires – has, we believe, implications for funding agencies who need to understand that working with caregivers agencies, requires a considerable amount of time for building relationships, aligning values, and establishing trust. Conclusions: In addition to providing adaptable strategies, the paper contributes to discussions surrounding how projects seeking effective, meaningful, and ethical patient and public engagement are planned and funded. We call for more evidence to explore effective mechanisms to recruit family caregivers into qualitative research. We also call for reports of successful strategies that other researchers have employed to recruit and retain family caregivers in their research.

Access source material through DOI

Information, communication, and online tool needs of Hispanic family caregivers of individuals with Alzheimer’s disease and related dementias

Purpose: To identify the information and communication needs of Hispanic family caregivers for individuals with Alzheimer’s Disease and Related Dementias (ADRD) and the manner in which online tools may meet those needs. Methods: We conducted 11 participatory design sessions with 10 English- and 14 Spanish-speaking urban-dwelling Hispanic family caregivers and gathered data using a survey, collage assemblage, and audio and video recordings. Four investigators analyzed transcripts of audio recordings with a coding framework informed by several conceptual models. Results: Participants had an average age of 59.7 years, were mostly female (79.2%), and had cared for a family member with ADRD for an average of 6.5 years. All participants accessed the Internet at least once a week with 75% ≥ daily. Most used the Internet to look up health information. All participants reported caregiver attributes including awareness of the disease symptoms or behaviors. The majority reported information needs/tasks (91.7%), communication needs/tasks (87.5%), and need for online tools (79.2%). Conclusion: Hispanic caregivers of individuals with ADRD reported key information and communication needs/tasks. Only Spanish-speaking participants reported Internet and technology use deficits suggesting the requirement for further technology support. Data show a need for online tools to meet the needs of caregivers. 

Access source material through DOI

Using Video Feedback at Home in Dementia Care: A Feasibility Study

Video feedback at home (VFH) aims to improve the well-being of informal caregivers and persons with dementia by training the caregiver to communicate successfully. This feasibility study had 2 aims: (1) to investigate possible effects regarding VFH, caregiver self-efficacy and the burden experienced, and the frequency of challenging behavior in persons with dementia, and (2) to perform a process evaluation of barriers and facilitators regarding the use of VFH. The respondents were caregivers of home-dwelling persons with dementia participating in VHF (N = 10), a group of caregivers who declined participating in VFH (N = 18), stakeholders (N = 6), and field experts (N = 55). The assessments performed were Positive and Negative Affect Scales, Cohen-Mansfield Agitation Inventory, Sense of Competence Scale, semistructured interviews, and questionnaires. Results demonstrated that caregivers were satisfied with VFH and that various (sub)scores on questionnaires improved. Caregivers mentioned a reluctance toward being filmed and both caregivers and referrers were unfamiliar with VFH. Recommendations have been made for health-care professionals and researchers to overcome these barriers.

Access source material through DOI

Co-construction of an Internet-based intervention for older assistive technology users and their family caregivers: stakeholders’ perceptions

Purpose: Providing care to older adults using assistive technology can be challenging for family caregivers. To inform the development of an Internet-based intervention, this study aimed to identify older assistive technology users and family caregivers’ needs related to assistive technology procurement, and to explore how to offer remote support through an Internet-based intervention. Methods: Based on an iterative user-centered design approach, 30 semi-structured interviews were conducted with stakeholders about their experiences with assistive technology procurement/attribution and their perceptions of a proposed intervention. A modified content analysis approach was used, with a mix of emerging and a priori concepts. Results: Participants view assistive technology procurement as an ongoing cyclical process, with potential unmet needs at key moments before and after assistive technology procurement. Assistive technology user-family caregiver dyads needs focus on assistive technology information, access, assistive technology-person-context match, training and support. While participants felt there were benefits to the proposed intervention they also identified potential implementation barriers. Conclusion: Assistive technology Internet-based interventions dedicated to family caregivers should ensure systematic and tailored follow-up while integrating some form of human support. This study guides the prototype design of the proposed intervention towards a graded support approach, empowering assistive technology users and family caregivers to resolve assistive technology-related challenges. Implication for rehabilitation Providing home-based care to older adults using assistive technology (e.g., mobility aids, communication aids) can be challenging for family caregivers. Using a user-centered design approach, an Internet-based intervention is under development to support older assistive technology users and their family caregivers. Through interviews with diverse stakeholders, this study explores unmet needs related to assistive technology procurement and perceptions about the proposed intervention. 

Access source material through DOI

Can brief telephone interventions reduce caregiver burden and depression in caregivers of people with cognitive impairment? - Long-term results of the German day-care study (RCT)

Background: Day-care and telephone counseling have been discussed as effective support measures for caregivers of people with cognitive impairment. Methods: In a two-arm cluster-randomized trial involving multicomponent therapy for cognitively impaired persons in day-care centers and telephone counseling for their caregivers versus treatment as usual (TAU), we investigated long-term effects on caregivers' burden and depressiveness. Person-caregiver dyads involving home-dwelling persons with MCI, mild dementia, or moderate dementia were eligible. Day-care centers were randomized into an intervention group (IG) or a control group (CG). Outcome assessors were blinded. Out of 359 caregivers who had completed a 6-month intervention phase (nIG = 205, nCG = 154), a total of 304 of them were available at the 12-month follow-up (nIG = 173, nCG = 131). Instruments for assessing were the Burden Scale for Family Caregivers - short version (BSFC-s) (caregiver burden) and the Well-Being Index Score (WHO-5) (depressiveness). Mixed ANOVAs were used for the main analyses; descriptive statistics and subgroup analyses were additionally performed; secondary analyses involved multiple linear regressions for the main outcomes that were significant in the unadjusted main analysis. Results: At follow-up, crude mean differences showed a nonsignificant advantage for the IG in caregiver burden [IG: -.20 (SD = 5.39) vs. CG:.76 (SD = 5.49), p =.126, d =.177] and depressiveness (reverse scored) [IG: -.05 (SD = 5.17) vs. CG: -.98 (SD = 5.65), p =.136, d =.173]. For caregiver burden, a mixed ANOVA resulted in significant main effects of group (F (1, 302) = 4.40; p =.037) and time (F (1.88, 568.96) = 3.56; p =.032) but not a significant interaction. The largest effects were found for the "mild dementia" subgroup (d =.443 for caregiver burden and d =.520 for depressiveness). Discussion: Positive long-term effects of a combined intervention involving telephone counseling for caregivers and multicomponent activation for patients were observed especially for mild dementia. However, the treatment effects washed out after the intervention ended. Trial registration: ISRCTN16412551 (date: 30 July 2014, retrospectively). 

Access source material through DOI

Designing and developing a co-produced theoretical and evidence-based online support for family caregivers of people with dementia at the end of life

Background: Caring for someone with dementia can be physically and emotionally difficult. Acting as a caregiver can make it difficult to access sources of support, particularly in the later stages of dementia. This paper reports the development and presents the targets (subject areas) and components of a prototype website to support family caregivers of a person with dementia towards the end of life. Methods: Adopting an iterative approach and co-production methods the development process consisted of four stages: Stage1-Synthesis of data: Three sources of data (interviews, systematic review and theory) were synthesised using tabulation, to identify the targets of the prototype; Stage2-Identifying intervention targets and components: A research development group (health practitioners, a family caregiver and academic experts) met to discuss the development, using a modified nominal group process, refining the synthesis from stage 1; Stage3-Developing the intervention prototype: An outline of the prototype was developed based on stage 1 and 2; and Stage4-User testing: Interviews with caregivers testing the prototype website. Results: Qualitative interviews with caregivers identified four targets for the intervention: 1) feeling prepared and equipped; 2) feeling connected and supported; 3) valuing themselves as a caregiver and as an individual; 4) maintaining control of the caring situation and being the coordinator of care. The systematic review provided evidence on how and what components could address these targets, including providing information, peer support, contact with professionals, and psychological support. Theory helped to narrow the focus within each of these targets. Active discussion with the research development group and end users provided an outline of the prototype website. The prototype website presented addresses these targets with written information, videos from other caregivers, and peer and professional support sections. The subject areas covered included expectations at the end of life, support with day-to-day caring, care planning, and communication. Conclusions: This paper provides a detailed account of the development process of a prototype website for caregiver support. The transparent methodology and key lessons learnt from developing the prototype should help those who are developing similar interventions, across complex, progressive conditions and not just limited to dementia. 

Access source material through DOI

Assistive robots for socialization in elderly people: results pertaining to the needs of the users

Background/aim: Technological solutions can support the elderly, improve their quality of life and reduce isolation and loneliness. The Euro-Japan ACCRA (Agile Co-Creation for Robots and Aging) project has the objective of building a reference co-creation methodology for the development of robotic solutions for ageing. The aim of this study is to provide a pilot qualitative analysis of the real needs of elderly people and their caregivers when exposed to conversational activities with robots and to identify priority needs that should be developed from end-user perspectives. Methods: A qualitative research design was adopted to define a pre-structured questionnaire that was administered to the elderly taking part in the piloting sessions. Three groups of end-users were included: subjects with an age ≥ 60 years, informal caregivers and formal caregivers. Results: The interviews were carried out in Italy and Japan. A total of 17 elderly and 36 caregivers were recruited. Common needs in the two sites were categorized into 3 groups: Communication; Emotion Detection and Safety. General robot acceptance level is good and perception is positive among participants in the pilot sites. Conclusion: A positive perception of the elderly on the application of a robotic solution was found and many are the needs that could be addressed by an appropriate and careful robotic development taking into account the real needs and capabilities of the involved subjects. 

Access source material through DOI

Give me a break: Design for communication among family caregivers and respite caregivers

This study focuses on solutions to issues that arise from gaps in communication between primary family caregivers of older adults and respite caregivers. We collected data through 18 semi-structured interviews with primary family and respite caregivers and qualitatively analyzed the interviews to extract common needs. Participants identified three main needs that our designs address: building trust through status updates, learning routines & care management, and accessing technology. Based on those needs, we designed a prototype of an application which connects primary family caregivers with respite caregivers and facilitates communication between the involved parties. This design can serve as a framework for future work designed to improve elder care in general, the well-being of caregivers, and the efectiveness of respite care. 

Access source material through DOI

Utilizing the Advances in Digital Health Solutions to Manage Care in Cancer Patients

In recent years, the clinical context for cancer has changed, and it is now characterized by extended survival rates and more diverse and complex cancer trajectories and symptomatology. The changes in the landscape of cancer care also include a shift towards the home setting or the outpatient setting with an increased amount of care being delivered at home or transferred to the patients themselves and their family caregivers. These changes have also impacted the type and amount of information required by the patients and their caregivers as well as the type of care needs that are to be addressed by health-care professionals. Finally, the transitions within the health-care setting might also create a caring gap that the patient is left to deal with independently or with minimal support. These changes have led to the emergence of innovative digital/technological solutions for supporting patients during their cancer care continuum.

Access source material through DOI

Internet use for family carers of people with intellectual disabilities: A literature review and thematic synthesis

Being a family carer can be rewarding but can also lead to mental and physical exhaustion as well as feelings of social exclusion and isolation. Research has shown that the use of the Internet and online forums can provide an immediate place to find information and reassurance and that forum use can be an empathetic place to share experiences and seek emotional support. This article details a systematic literature search of research on carers of people with intellectual disabilities and/or autism using the Internet. A thematic synthesis of the resulting papers identified that online forums give carers a sense of agency by providing a place to go for informational support that may not be elsewhere. Carers also enjoyed the safe community of solidarity and emotional support that online forums provide. An important finding is the lack of published papers in this area with the inclusion of just eight papers.

Access source material through DOI

In Their Own Words: Experiences of Caregivers of Adults With Cancer as Expressed on Social Media

PURPOSE: To explore caregivers' writings about their experiences caring for adult individuals with cancer on a social media health communication website. PARTICIPANTS & SETTING: Journal entries (N = 392) were analyzed for 37 adult caregivers who were posting on behalf of 20 individuals with cancer. CaringBridge is a website used by patients and informal caregivers to communicate about acute and chronic disease. METHODOLOGIC APPROACH: A retrospective descriptive study using qualitative content analysis of caregivers' journal entries from 2009 to 2015. FINDINGS: Major categories identified in caregivers' online journals included patient health information, cancer awareness/advocacy, social support, caregiver burden, daily living, emotions (positive and negative), and spirituality. IMPLICATIONS FOR NURSING: Nurses often recommend using social media as a communication strategy for patients with cancer and their caregivers. The findings from this study provide potential guidance nurses may wish to offer caregivers. For example, nurses may talk with caregivers about how and what to post regarding treatment decisions. In addition, nurses can provide support for caregivers struggling with when and how often to communicate on social media.

Access source material through DOI

Closer: A videoconference intervention for distance caregivers of cancer patients

Distance caregivers (DCGs) represent a growing demographic. The emotional burden of caregiving for a family member with cancer is amplified by the logistical challenges of providing support from afar. DCGs feel higher levels of distress, anxiety, and depression compared with local caregivers. Videoconference technology may alleviate both the emotional and practical burdens faced by DCGs. This is an ongoing randomized controlled trial in 32 outpatient ambulatory clinics at a large, urban, comprehensive cancer center. To date, 332 patient‐DCG dyads have been enrolled. DCGs must have internet access and have been identified by the patient as a source of support. The intervention period is 4 months. DCGs are randomized to one of three arms: DCGs in Arm 1 receive four coaching sessions with an advanced practice nurse or social worker and four videoconference appointments during the oncologist‐patient office visit. DCGs in Arm 2 participate in four videoconference appointments with the oncologist and patient, and Arm 3 is the control group, which receives access to information through a website. Primary outcome variables are DCG distress, anxiety, depression, burden, self‐efficacy, and emotional support. These data are collected electronically at baseline, 4 months, and 6 months. Patient distress, anxiety, and depression are also assessed at these same intervals using brief in‐person interviews. The change in each of the DCG outcomes over time will be examined by a repeated measures analysis of covariance.

Access source material through DOI

Caregivers for the elderly in Thailand: development and evaluation of an online support system

Informal caregivers are playing a major role in helping elderly people with their activities in daily life. The purpose of this work is to develop an Online Support System for Elderly Care (OSSEC) to provide services for informal caregivers in Thailand. The system has six modules which are: patient and caregiver profile manager, elderly care recommender applying case-based reasoning, daily care plan manager, elderly care activity notifier, elderly care information resource locator and caregivers’ social interaction platform. We have established the utility of OSSEC in enhancing the knowledge and ability of informal caregivers and in reducing their stress. In particular, we measured quantitatively the usefulness of OSSEC and evaluated user satisfaction as well.

Access source material through DOI

Improving family caregiver and patient outcomes in lung cancer surgery: Study protocol for a randomized trial of the multimedia self-management (MSM) intervention

Objective: To describe the study protocol of the Multimedia Self-Management (MSM) intervention to prepare patients and family caregivers (FCGs) for lung cancer surgery.; Design: The study is a five-year, single site, randomized controlled trial of 160 lung cancer surgery FCG and patient dyads (320 total participants), comparing intervention and attention control arms.; Setting: One National Cancer-Institute (NCI) designated comprehensive cancer center in Southern California.; Participants: Patients who are scheduled to undergo lung cancer surgery and their FCGs are enrolled as dyads only.; Intervention: Based on the Chronic Care Self-Management Model (CCM), the intervention is a nurse-led, caregiver-based, multimedia care program for lung cancer surgery. Its primary focus is to help FCGs develop self-management skills related to their caregiving role through goal setting, proactive planning, building problem-solving skills, and accessing family support services. The intervention also supports dyads to prepare for surgery and post-operative recovery at home. It includes videos, print, web-based, and post-discharge telephone support.; Main Outcome Measures: FCG and patient psychological distress and QOL; FCG burden and preparedness for caregiving; FCG and patient healthcare resource use (in-home nursing care, urgent care/ER visits, readmissions).; Analysis: Repeated measures ANCOVA statistical design will be used, removing variances prior to examining mean squares for the group by occasion interactions, and co-varying the baseline scores. In addition, structured equation modeling (SEM) will assess whether mediating and moderating factors are associated with outcomes. ClinicalTrials.gov Identifier: NCT03686007.

Access source material through DOI

Informal carers' experience and outcomes of assistive technology use in dementia care in the community: a systematic review protocol

Background: Dementia is one of the greatest health and care priorities globally. Caring for persons with dementia is a challenge and often leads to negative psychological, physiological and financial consequences for informal carers (family members or friends). Many informal carers experience moderate to severe levels of burden. Advances in technology have the potential to assist persons with dementia and their carers, through assistive technology (AT) devices such as electronic medication dispensers, robotic devices and motion detectors. However, little is known about informal carers’ experience and the impact of these technologies on them. This review aims to investigate the outcomes and experience of carers of persons with dementia, who live at home and use AT. Method: MEDLINE, Embase, CINAHL, AMED, ALOIS, PsycINFO, Trial registries and OpenGrey databases will be searched for studies of any design that have investigated carer experience and/or outcomes of AT use for persons with dementia living at home. Manual searches from reference lists of relevant papers will also be undertaken. Outcomes of interest are carers’ self-reported outcomes (which include perceived burden, quality of life and wellbeing) and carer experiences (such as usefulness, benefits and disadvantages of AT and impact on caregiver/care receiver relationship). Two independent reviewers will screen identified papers with pre-defined eligibility criteria and extract data using a bespoke extraction form. Discrepancies will be resolved in discussion with a third reviewer. A synthesis of eligible studies and summary will be provided. Discussion: A systematic review of quantitative, qualitative and mixed methods evidence of informal carers’ experience of AT use in dementia in the community will be carried out. It is anticipated that this will highlight (1) investigations on impact of AT use on carers, (2) outcome measures and experience questionnaires that have been used and (3) the types of studies carried out so far on this topic. The results from the review will be presented in a summary matrix of common types (e.g. mobile phones, alarms) and uses (e.g. communication, safety, personal care) of AT in dementia care and also identify AT that is not usually available through government or health system funding

Access source material through DOI

The agency of patients and carers in medical care and self-care technologies for interacting with doctors

People living with Parkinson's disease engage in self-care for most of the time but, two or three times a year, they meet with doctors to re-evaluate the condition and adjust treatment. Patients and (informal) carers participate actively in these encounters, but their engagement might change as new patientcentred technologies are integrated into healthcare infrastructures. Drawing on a qualitative study that used observations and interviews to investigate consultations, and digital ethnography to understand interactions in an online community, we describe how patients and carers living with Parkinson's participate in the diagnosis and treatment decisions, engage in discussions to learn about certain topics, and address inappropriate medication. We contrast their engagement with a review of self-care technologies that support interactions with doctors, to investigate how these artefacts may influence the agency of patients and carers. Finally, we discuss design ideas for improving the participation of patients and carers in technology-mediated scenarios. 

Access source material through DOI

Acceptance and Commitment Therapy for Symptom Interference in Advanced Lung Cancer and Caregiver Distress: A Pilot Randomized Trial

Context: Advanced lung cancer patients typically have a poor prognosis and many symptoms that interfere with functioning, contributing to high rates of emotional distress in both patients and family caregivers. There remains a need for evidence-based interventions to improve functional outcomes and distress in this population.; Objectives: This pilot trial examined the feasibility and preliminary efficacy of telephone-based Acceptance and Commitment Therapy (ACT) for symptomatic, advanced lung cancer patients and their distressed family caregivers. Primary outcomes were patient symptom interference with functioning and patient and caregiver distress.; Methods: Symptomatic, advanced lung cancer patients and distressed caregivers (n=50 dyads) were randomly assigned to six sessions of ACT or an education/support condition. Patients completed measures of symptom interference and measures assessing the severity of fatigue, pain, sleep disturbance, and breathlessness. Patients and caregivers completed measures of distress and illness acceptance and struggle.; Results: The eligibility screening rate (51%) and retention rate (76% at 6 weeks post-intervention) demonstrated feasibility. No group differences were found with respect to patient and caregiver outcomes. Both groups showed a small, significant decrease in struggle with the illness over the study period, but did not show meaningful change in other outcomes.; Conclusion: Findings suggest that telephone-based ACT is feasible for many advanced lung cancer patients and caregivers, but may not substantially reduce symptom interference and distress. Low baseline levels of certain symptoms may have contributed to null findings. Next steps include applying ACT to specific, clinically meaningful symptom interference and varying intervention dose and modality.

Access source material through DOI

What Are the Characteristics of Caregivers Logging in for Support Services?

Background and Objectives: Online service delivery options have the potential to increase access to informational resources among caregivers to older adults. However, it is unknown which caregivers will use online-delivered services over usual service delivery modes (e.g., by phone) when both options are available in social service settings. This is important for service providers to know when making decisions that best serve their communities. Research Design and Methods: Guided by Andersen’s model of health service utilization, we used step-wise logistic regression models to compare the characteristics of caregivers who used an online information service called FCA CareJourney (FCA CJ) with those who accessed the same services using the usual mode of service delivery (N = 540). Online and usual-care services were available through two social service organizations in California. Results: In all, 13.7% of clients used FCA CJ to receive services online. Enabling characteristics were the main predictors of using online-delivered services. Caregivers employed part-time had 3.82 times the odds of using online-delivered services compared to those employed full-time (odds ratio [OR] = 3.82; 95% confidence interval [CI]: 1.58–9.22). Caregivers who learned about services from health care providers had 2.91 times the odds of using FCA CJ as those who learned about services through social services (OR = 2.91; 95% CI: 1.28–6.62). Even among those who learned about services online, 62.2% still accessed services using usual delivery modes. Discussion and Implications: Based on differences in the characteristics of caregivers using different service delivery modes and the low uptake of online-delivered services, we suggest online service delivery should supplement, not replace, usual delivery modes in social service settings. At the same time, user rates of online service delivery are likely modifiable. Given the potential for online-delivered programming to expand access to information services for caregivers, we recommend further examination into the effects of marketing online service delivery options to caregivers in novel ways

Access source material through DOI

Feasibility of e-Pain Reporter: A Digital Pain Management Tool for Informal Caregivers in Home Hospice

Informal hospice caregivers often have difficulty managing patient pain at home. We developed a digital application, e-Pain Reporter, for informal caregivers to record and providers to monitor patient pain and pain management. The purpose of this study was (1) to assess the feasibility of informal caregivers using the e-Pain Reporter for 9 days in home hospice by investigating recruitment and retention and caregiver satisfaction with and frequency of use of the e-Pain Reporter and (2) describe patient pain characteristics and caregiver's barriers to painmanagement and self-efficacy in providing patient care in the home. One-group pre-post design was used. Patient-caregiver dyads were recruited from 1 hospice agency. Caregivers were asked to report all patient pain and pain management using the e-Pain Reporter. Feasibility of the e-Pain Reporter was assessed by the average number of times caregivers recorded breakthrough and daily pain and caregiver satisfaction with the app. The 27-item Barriers Questionnaire II and 21-itemCaregiver Self-efficacy Scale were administered at baseline. Fourteen dyads enrolled, 2 patients died, and 12 dyads completed the study. Mean number of pain reports over 9 days was 10.5. Caregivers reported high overall satisfaction with the e-Pain Reporter. Barriers scores were moderately high, suggesting erroneous beliefs and misconceptions about pain reporting and use of analgesics, but self-efficacy in managing pain was also high (93% confidence). Findings suggest that the e-Pain Reporter is a feasible method to report and monitor caregiver management of pain at home. Caregiver high barriers and high overconfidence suggest the need for an educational component to the e-Pain Reporter to address misconceptions about pain and pain management.

Access source material through DOI

Hispanic Dementia Family Caregiver's Knowledge, Experience, and Awareness of Self-Management: Foundations for Health Information Technology Interventions

Purpose: As a first step toward developing a web-based Family-Health Information Management System intervention, we explored Hispanic dementia family caregiver's knowledge, use, and awareness of self-management principles and skills to address health and health care needs for themselves and the person with dementia (PWD). Method: Twenty caregivers and 11 caregiver counselors attended an English or Spanish language focus group ranging from 4 to 6 participants. We conducted a directed content analysis informed by Lorig and Holman's conceptualization of self-management. Results: A complement of six skills (i.e., problem solving, decision making, resource utilization, patient–provider partnership, action planning, and self-tailoring) to achieve one of three tasks (i.e., emotional, medical, and role management) can fully represent Hispanic dementia family caregivers' ability to self-manage health and health care needs. While not prominent in our study, caregivers and caregiver counselors pointed out existing and potential uses of personal consumer technology to schedule reminders and search for resources. Discussion: A broad conceptualization of self-management may be necessary to understand Hispanic dementia family caregiver's ability and needs to address emotional, medical, and role challenges of caregiving. Conclusions: These findings and advances in the use of consumer health information technology support the development of self-management caregiver interventions.

Access source material through DOI

Patient and caregiver preferences for the potential benefits and risks of a seizure forecasting device: A best–worst scaling

Background: Epilepsy is the 4th most common neurological disorder and is characterized by recurrent, unpredictable seizures. The ability to forecast seizures is a significant unmet need and would have a transformative effect on the lives of people living with epilepsy. In an effort to address this need, the Epilepsy Foundation has committed effort and resources to promote the development of seizure forecasting devices (SFD). Objective: To promote user-centered design of future SFD, we sought to quantify patient and caregiver preferences for the potential benefits and risks of SFD. Methods: A community-centered approach was used to develop a survey incorporating a novel best–worst scaling (BWS) to assess preferences for SFD. A main-effect orthogonal array was used to design and generate 18 "prototypes" that systematically varied across six attributes: seizure forecasting probability, seizure forecasting range, inaccuracy of forecasting, amount of time required to use the device, how the device is worn, and cost. The dependent variable was the attributes that respondents selected the best and worst in each profile, and a choice model was estimated using conditional logistic regression, which was also stratified and compared across patients and caregivers. Respondents also indicated that they would accept each of the prototype SFDs if it were real. These acceptance data and net monetary benefits (relative to the least preferred SFD) were explored. Results: There were 633 eligible respondents; 493 (78%) completed at least one task. Responses indicated that 346 (68%) had epilepsy, and 147 (29%) were primary caregivers or family members of someone with epilepsy. The data show that short forecasting range is the most favored among experimental attributes, followed by mid forecasting range and notification of high chance of seizure. Having the device implanted is the least favorable attribute. Stated preferences differed between patients and caregivers (p < 0.001) for range of forecasting and inaccuracy of device. Caregivers preferred any range of forecasting, regardless of length, more than patients. Patients cared less about inaccuracy of the device compared to caregivers. The groups also differ in impact of fear of having seizures (versus actually having seizures) (p = 0.034) and on device acceptance. The acceptance of devices ranged from 42.3% to 95%, with caregivers being more likely to use a device (p < 0.05) for the majority of device profiles. Acceptance of devices varied with net monetary benefit of the best device being $717.44 more per month relative to the least preferred device. Conclusion: Our finding extends previous calls for seizure forecasting devices by demonstrating the value that they might provide to patients and caregivers affected by epilepsy and the feature that might be most and least desirable. In addition to guiding device development, the data can help inform regulatory decisions makers.

  • The epilepsy community desires a seizure forecasting device that can accurately gauge the likelihood of a seizure
  • It is crucial to incorporate the patient voice in the development of seizure forecasting devices.
  • Preferences for and willingness to use a forecasting device differ between patients and caregivers.
Access source material through DOI

Pilot Test of a Computer-Based System to Help Family Caregivers of Dementia Patients

Background: Family members absorb much of the care of dementia patients. The burden of care substantially impacts caregivers' health, further straining our healthcare system. By 2050, the incidence of Alzheimer's disease will more than double, increasing the numbers of family caregivers proportionally. Interventions that reduce their burden are needed to preserve their health as well as the viability of the healthcare system.; Objective: This paper reports on the development and feasibility testing of a computer-based system intended to improve the lives of caregivers. D-CHESS (Dementia-Comprehensive Health Enhancement Support System) allows users to obtain information, communicate with other caregivers, get help with care decisions, and share information with experts.; Method: Thirty-one caregivers were randomly assigned to an intervention group receiving D-CHESS for 6 months or to a control group receiving a caregiving book. Surveys at 0, 2, 4, and 6 months evaluated caregiver burden, family conflict, satisfaction with decisions, social support, loneliness, anxiety, depression, and coping competence.; Results: Survey findings suggest D-CHESS participants may perform better on measures of social support, anxiety, loneliness, and coping competence; the groups were equivalent on caregiver burden, decision satisfaction, and depression, and the control group reported less family conflict than the intervention. D-CHESS use data suggested enhancements to system design and content to increase awareness and use of various features.; Conclusion: This study suggests that D-CHESS has potential to positively impact family caregivers and that the system merits further development and investigation with a full-scale clinical trial.

Access source material through DOI

Factors influencing the adoption of Smart Health technologies for people with dementia and their informal caregivers: Scoping review and design framework

Background: Smart Health technologies (s-Health technologies) are being developed to support people with dementia (PwD) and their informal caregivers at home, to improve care and reduce the levels of burden and stress they experience. However, although s-Health technologies have the potential to facilitate this, the factors influencing a successful implementation in this population are still unknown. Objective: The aim of this study was to review existing literature to explore the factors influencing PwD and their informal caregivers’ adoption of s-Health technologies for home care. Methods: Following the Arksey and O’Malley methodology, this study is a scoping review providing a narrative description of the scientific literature on factors influencing s-Health technology adoption for PwD and their informal caregivers. A search was conducted using PubMed, the Cochrane library, the IEEE library, and Scopus. Publications screening was conducted by 2 researchers based on inclusion criteria, and full-text analysis was then conducted by 1 researcher. The included articles were thematically analyzed by 2 researchers to gain an insight into factors influencing adoption that PwD and their informal caregivers have to encounter when using s-Health technologies. Relevant information was identified and coded. Codes were later discussed between the researchers for developing and modifying them and for achieving a consensus, and the researchers organized the codes into broader themes. Results: Emerging themes were built in a way that said something specific and meaningful about the research question, creating a list of factors influencing the adoption of s-Health technologies for PwD and their informal caregivers, including attitudinal aspects, ethical issues, technology-related challenges, condition-related challenges, and identified gaps. A design framework was created as a guide for future research and innovation in the area of s-Health technologies for PwD and their informal caregivers: DemDesCon for s-Health Technologies. DemDesCon for s-Health Technologies addresses 4 domains to consider for the design and development of s-Health technologies for this population: cognitive decline domain, physical decline domain, social domain, and development domain. Conclusions: Although s-Health technologies have been used in health care scenarios, more work is needed for them to fully achieve their potential for use in dementia care. Researchers, businesses, and public governments need to collaborate to design and implement effective technology solutions for PwD and their informal caregivers, but the lack of clear design guidelines seems to be slowing the process. We believe that the DemDesCon framework will provide them with the guidance and assistance needed for creating meaningful devices for PwD home care and informal caregivers, filling a much-needed space in the present knowledge gap.

Access source material through DOI

Providing Support for Caregiver Communication Burden: Assessing the Plain Language Planner Resource As a Nursing Intervention

Objective: To elicit informal caregiver feedback about an mHealth resource and it's potential as a nurse-delivered intervention for caregiver communication support.; Data Sources: Four focus groups with current oncology caregivers that involved caregiver use of the resource and response to a video demonstrating the resource as a nursing intervention. A brief assessment of the resource was collected for triangulation of data.; Conclusion: Caregivers rated the resource as overwhelmingly positive and reported that use of the resource gave an increased sense of preparedness. Caregivers shared ideas for future expansion of the resource, highlighted the need for user-responsive design, and described the need for a caregiver-centered tool.; Implications For Nursing Practice: Communicating complex terminology relating to treatment, side effects, and symptoms requires resources to meet health literacy needs. A nursing protocol for using the resource is provided based on feedback collected from caregivers.

Access source material through DOI

State of Caring 2019: A snapshot of unpaid care in the UK

Carers UK carried out an online survey between March and May 2019. A total of 8,069 carers and former carers responded to the survey – we have only included responses from the 7,525 people who are currently providing care in this report. Compared to the carer population as a whole, respondents to this survey were more likely to be female and caring for a high number of hours every week. Of respondents to the survey:

  • 73% live in England, 10% live in Scotland, 9% live in Northern Ireland, and 8% live in Wales.
  • 81% identify as female and 18% identify as male.
  • 24% consider themselves to have a disability.
  • 1% are aged 0–24, 4% are aged 25–34, 13% are aged 35–44, 30% are aged 45–54, 32% are aged 55– 64, 14% are aged 65–74, and 5% are aged 75 and over. 
  • 3% identified as lesbian, gay or bisexual.
  • 5% described their ethnicity as black or minority ethnic.
  • 20% also have childcare responsibilities for a non-disabled child under 18. 
  • 39% are in paid work. Of those, 47% work full-time and 53% part-time. 
  • 31% have been caring for 15 years or more, 15% for between 10–14 years, 24% for 5–9 years, 26% for 1–4 years, and just 4% have been caring for less than one year. 
  • 46% care for 90 or more hours every week, while 17% care for 50–89 hours, 23% care for 20–49 hours, and 13% care for 1–19 hours a week. 
  • Most (74%) care for one person, 20% care for two people, 5% for three people, and 2% care for four or more people. 

As not all respondents completed every questions in the survey, a number of the figures given in this report, including those presented in this Appendix, are based upon responses from fewer than 7,525 carers. This, together with the sample sizes of different groups, should be taken into consideration when reading the results.

Original source (some source materials require subscription or permission to access)

Innovative Tools to Support Family Caregivers of Persons with Cancer: The Role of Information Technology

Objectives: To describe the current evidence of studies examining the use of information technology for family caregivers of persons with cancer. We highlight emerging technologies and trends and discuss ethical and practical implications.; Data Sources: Review scientific studies and systematic reviews of technology use to support caregivers of persons with cancer.; Conclusion: The evidence base is growing; however, more studies are needed to test the effectiveness of technology.; Implications For Nursing Practice: Several tools have potential to provide support to family caregivers but the selection of such tools needs to address access, privacy, interoperability, and usability considerations.

Access source material through DOI

Process evaluation of a social support platform ‘Inlife’ for caregivers of people with dementia

Introduction Informal caregivers of persons with dementia have an increased risk of facing social isolation. Online social media interventions might offer a new opportunity to increase access to social support. An online social support platform, ‘Inlife’, was developed and launched in the Netherlands to enhance social support, positive interactions and information sharing in informal support networks. Objective A process evaluation was performed to evaluate the internal and external validity of the Inlife intervention. Methods Implementation, sampling and intervention quality were evaluated by both qualitative and quantitative methods. Analyses were performed using descriptive statistics and inductive content analysis. Analyses were conducted following participants' completion of the intervention after 16 weeks. Results The overall participation rate in the study was 27% (96/351). The Inlife intervention was generally well-received by the primary caregivers. Inlife facilitated empowerment, openness, involvement, and efficient care organization. Still, adherence was not optimal for all Inlife users. Determinants for Inlife use were identified on the level of the Inlife innovation, the users, and the socio-political context. Conclusions Inlife was evaluated as a useful instrument for efficient central care coordination and mutual involvement. This study emphasizes that the personal attitudes of the Inlife users to seek and provide support warrant attention, next to the characteristics of the actual Inlife innovation for optimal intervention uptake. Online and offline support might be integrated to raise awareness of caregiver social support needs and attitudes and provide insight into caregivers' available social capital. Trial registration Dutch trial register NTR6131, Registered on 20 October 2016.

  • Users found that Inlife increased empowerment, openness, involvement, and efficient care organization.
  • Lower adherence rates may have affected internal and external validity.
  • Determinants for Inlife use were found at the level of the innovation, the users, and the socio-political context.
  • Implementation strategies should focus on attitudes and barriers of Inlife’s users, as well as Inlife’s characteristics.
  • Offline guidance might be integrated to raise awareness of caregivers’ social capital, their support needs and barriers.
Access source material through DOI

Systematic review of patient and caregivers’ satisfaction with telehealth videoconferencing as a mode of service delivery in managing patients’ health

Telehealth is an alternative method of delivering health care to people required to travel long distances for routine health care. The aim of this systematic review was to examine whether patients and their caregivers living in rural and remote areas are satisfied with telehealth videoconferencing as a mode of service delivery in managing their health. A protocol was registered with PROSPERO international prospective register of systematic reviews (#CRD42017083597) and conducted in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. A systematic search of Ovid Medline, Embase, CINAHL, ProQuest Health Research Premium Collection, Joanna Briggs Institute and the Cochrane Library was conducted. Studies of people living in rural and remote areas who attended outpatient appointments for a health condition via videoconference were included if the studies measured patient and/or caregivers’ satisfaction with telehealth. Data on satisfaction was extracted and descriptively synthesised. Methodological quality of the included studies was assessed using a modified version of the McMaster Critical Review Forms for Quantitative or Qualitative Studies. Thirty-six studies of varying study design and quality met the inclusion criteria. The outcomes of satisfaction with telehealth were categorised into system experience, information sharing, consumer focus and overall satisfaction. There were high levels of satisfaction across all these dimensions. Despite these positive findings, the current evidence base lacks clarity in terms of how satisfaction is defined and measured. People living in rural and remote areas are generally satisfied with telehealth as a mode of service delivery as it may improve access to health care and avoid the inconvenience of travel.

Access source material through DOI

Towards sustainable family care: using goals to reframe the user-centred design of technologies to support carers

Technology has been identified as an important strategy in making caring sustainable. This article takes the design process for carer support technology as a lens on the divergent definitions that are in play when governments, technology developers and carers contemplate 'sustainability'. We argue that a central impediment to finding a productive point of overlap among the three perspectives is a predominant focus on carers' needs. We contrast this needs-based approach, and its focus on doing the tasks of care, with a goal-oriented approach focused on being in relationships. Reframing the conversation around goals is important to achieving truly sustainable caring.

Access source material through DOI

A forgotten Army: Coping as a carer

Unpaid carers are the backbone of our society who often go unrecognised for their dedication and compassion. They face a range of challenges as they attempt to juggle their work-life-care responsibilities. That’s why we decided to commission YouGov to conduct a UK-wide research project focused on identifying gaps in support and sought to understand the views of unpaid carers.

Key findings

The impacts of loneliness, poor mental and physical health, financial worries and a lack of flexibility to learn or train are placing unpaid carers under increasing strain.

  • Two thirds (64%) of carers were most likely to feel the effect of caring on their social life, causing loneliness, which most commonly manifested as a result of having less time to themselves (48%), socialising less (47%) and generally having less contact with others (41%).
  • The next most common impact was mental ill health (49%). This included increased stress (42%), anxiety (33%) and depression (27%).
  • Almost half (45%) mentioned impacts that caring had on their family life, most notably spending less time with family.
  • Two in five carers reported an impact of caring on their physical health, most often mentioning tiredness (35%), trouble in sleeping (28%) and reduced fitness (20%).
  • More than two in five (44%) unpaid carers noted the impact of caring on their financial situation. The qualitative phase of the research also revealed many hidden costs of caring, including paying for medical supplies and transport to and from appointments.
  • Three in ten unpaid carers aged 16-34 said that their education or training had been affected.

When carers were asked about their support needs, a sizable majority (74%) of carers felt that further support in some form would be useful to them, with a common desire for emotional support (33%). Carers also sought information and advice about the support available, respite care, and finances. Our report also found that there was a need for advice about maintaining good mental and emotional health, shining a light on the often unexpected levels of stress, isolation and despondency felt by unpaid carers.

Original source (some source materials require subscription or permission to access)

Caregiver Communication About Cancer: Development of a mhealth resource to support family caregiver communication burden

Objective: The aim of this study is to illustrate an evidence-based and theoretically informed mhealth resource (smartphone app) designed to provide communication support for informal cancer caregivers (friends or family members). Methods: An eight-step process was conducted: (a) review of existing print resources, (b) selection of theoretical framework for content development, (c) integration of stakeholder feedback and literacy assessment into an alpha print model, (d) review of existing mhealth resources, (e) development of prototype, (f) assessment of caregiver acceptability (n = 5), (g) assessment of quality and perceived impact by cancer providers (n = 26), and (h) acceptability testing with caregivers (n = 6). Results: Key stakeholders were integrated throughout development and user testing of this iOS smartphone app. The smartphone app consists of talking tips and resources for caregiver communication with the patient, family, far away family, and health care providers, as well as general information sharing features. Conclusions: This study demonstrates feasibility and development of an evidence-based and theory-driven mhealth resource to support caregiver communication about cancer. This is the first theory-driven mhealth application created to support the communication burden experienced by cancer caregivers. A larger study is needed to establish the efficacy of the app as an intervention for caregivers. 

Access source material through DOI

Feasibility and Acceptability of Distress Screening for Family Caregivers at a Cancer Surgery Center

OBJECTIVES: To determine the feasibility and acceptability of a validated electronic distress screening program for cancer caregivers. SAMPLE & SETTING: 17 informal caregivers presenting with a patient with cancer to an ambulatory cancer surgery center. METHODS & VARIABLES: Caregivers completed the CancerSupportSource®--Caregiver screening and a brief semistructured interview concerning the screening. RESULTS: Caregivers described the screening as straightforward and comprehensive. They endorsed concerns about their self-care needs but were most likely to request information or a referral for patient-focused concerns. Referrals generated from the program are likely viably addressed with existing supportive care resources. IMPLICATIONS FOR NURSING: Brief, caregiverfocused distress screening is perceived positively by caregivers. Caregivers indicated that they felt it validated the importance of their role and highlighted the hospital's efforts to continually improve care. This screening program may be particularly beneficial in ambulatory surgical centers to efficiently identify caregivers with concerns and provide a point of entry to remediate these concerns. 

Access source material through DOI

Using a six-step co-design model to develop and test a peer-led web-based resource (PLWR) to support informal carers of cancer patients

Objective: To co-design and test the acceptability of a peer-led web-based resource (PLWR) for cancer carers to provide practical and emotional advice on common issues. Methods: A six-step co-design model informed PLWR development. Content was developed through three cancer carer workshops and monthly meetings with an expert advisory team (n = 12). User-testing was conducted via web-based survey and telephone interview. Descriptive statistics and thematic analysis were utilised. Google analytics explored site visits, commonly used components, and time spent using the PLWR. Results: The PLWR was developed to deliver cancer carer information tailored to each stage of the illness trajectory regardless of cancer type, in the form of videoed personal experiences. From November to May 2018, there were 2789 unique visits to the PLWR with 743 returners. The majority of time was spent on the full unclipped peer stories (414 views), and diagnosis-specific information (159 views), with less time spent on bereavement, cancer treatment, or self-care (120 views each). Fifty-five individuals completed the resource evaluation, with 10 participating in telephone interviews. Fifty-four carers rated the resource as excellent, useful, and easy to use. The web-based videos were regarded as convenient as and less burdensome than written information. The resource provided relevant information, potentially reducing isolation and uncertainty. Conclusion: The content and design of the PLWR appear acceptable to cancer carers. The co-design model is an effective way to develop appropriate information for service users and could be utilised as a framework for development of other interventions in a variety of disease groups.

Access source material through DOI

Resources for the Family Caregiver: A Review of the Family Caregiver Alliance and the AARP Caregiving Resource Center

The rate of family caregiving is steadily increasing as baby boomers retire and their loved ones step into the role as family caregiver. Whether caregiving is a sudden or anticipated role, caregivers are often unsure of where to turn for information or aide, and face many challenges including stress, depression, anxiety, and financial burdens. Credible, easy, and useful online resources are abundant, and the Family Caregiver Alliance and the AARP Caregiving Resources Center are no exception. Each provide excellent starting points for caregivers new to the role, or seasoned caregivers seeking additional information. Other sources compliment these pivotal sites, but each can stand alone as a primary source for family caregiving information.

Access source material through DOI

Acceptance and treatment effects of an internet‐delivered cognitive‐behavioral intervention for family caregivers of people with dementia: A randomized‐controlled trial

Objectives: The study evaluated the efficacy of an internet‐delivered cognitive‐behavioral intervention for caregivers of people with dementia and examined acceptance of program characteristics. Method: Thirty‐nine caregivers (Mage = 62.11 ± 9.67, 78.4% female) were enrolled in a 2 × 3 randomized‐controlled trial (RCT) that compared an intervention and wait‐list control group. A cognitive‐behavioral intervention program was adapted for delivery via an internet platform. Participants exchanged eight weekly messages with a therapist. Results: Treatment satisfaction and acceptance of the program were high. Well‐being increased over the intervention duration and intervention group participants were better able to cope with the anticipated death of the care recipient and utilized more psychosocial resources after the intervention ended. Effects were not maintained until follow‐up and there were no treatment effects for depression and burden of care. Conclusions: Internet‐delivered cognitive‐behavioral interventions are suitable for caregivers. A larger RCT needs to investigate possible combinations of classic and internet‐delivered programs and confirm efficacy.

Access source material through DOI

Online Resources: What Family Carers Think

In 2018, a survey found that 82% of the Irish population, across all age groups, had used the internet in some way in the three months preceding the survey (Central Statistics Office, 2018). Ninety-seven percent of those aged between 16 and 29, and nearly half of those aged between 60 and 74, had done so. It is clear, then, that  increasingly the internet is becoming a tool that must be understood and utilised as a viable way to supplement supports for family carers.

In order to discover how family carers in Ireland are using – and could be using – online services and supports, Care Alliance Ireland (in consultation with the National Carers Week partner organisations) undertook a survey of Irish family carers in April 2019.

300 family carers responded online, and a summary of their responses are included here. The purpose of this report is to highlight how family carers are using the internet to connect with others, to get supports and information from not-for-profit and statutory agencies, and to manage their lives as family carers. It should be noted that this is not a representative sample of Irish family carers – the survey was administered online and disseminated via the National Carers Week Facebook page and other online channels.

Internet supports are not, of course, a substitute for significant one-to-one supports. There will always be a need for the timely and adequate provision of in-home respite, therapies and all the other supports which are necessary to create a positive environment for a family carer to provide the best possible care to a family member or friend. However, if used in conjunction with existing supports they can be a source of peer support and a way to tackle the social isolation and loneliness that many family carers experience – in particular in rural and geographically isolated locations.

Original source (some source materials require subscription or permission to access)

Longitudinal Outcomes Among Family Caregivers of Power Mobility Users

Objective: To examine the change over 1 year in the burden, wheelchair skills, social support, social participation, and mental health of family caregivers providing assistance to older adult powered wheelchair users.; Design: Longitudinal study.; Setting: Community.; Participants: Participants (N=35) included family caregivers (mean age ± SD=63.7±10.2y) who provided at least 2 hours of general care per week for a powered wheelchair user.; Intervention: Not applicable.; Main Outcome Measures: The Power Mobility Caregiver Assistive Technology Outcome Measure (frequency of care and subjective burden), the Wheelchair Skills Test Questionnaire for caregivers (wheelchair skills), the Interpersonal Support Evaluation List-6 (social support), the Late-Life Function and Disability Instrument (social participation), the Hospital Anxiety and Depression Scale (mental health). Measures were taken at baseline, 1, 3, 6, and 12 months. Descriptive statistics were calculated, and a linear mixed model was used to assess changes over time in the outcomes.; Results: The results showed that the caregivers helped on average with 3 powered wheelchair-related activities and 10 other caregiving activities. They also experienced moderate subjective burden and social participation and were within the normal range for depression and anxiety. Moreover, those outcomes remained stable over the 1-year study period. However, the wheelchair skills scores showed significant changes over time, as the scores improved during the first 6 months of the study.; Conclusion: Given that previous research indicated that subjective burden tends to decline over time among caregivers, the findings of stability in this study may reflect increasing needs among this population of caregivers, who may benefit from additional support and interventions. This would need further consideration.

Access source material through DOI

A Tablet App- and Sensor-Based Assistive Technology Intervention for Informal Caregivers to Manage the Challenging Behavior of People With Dementia (the insideDEM Study): Protocol for a Feasibility Study

Background: Despite the enormous number of assistive technologies (ATs) in dementia care, the management of challenging behavior (CB) of persons with dementia (PwD) by informal caregivers in home care is widely disregarded. The first-line strategy to manage CB is to support the understanding of the underlying causes of CB to formulate individualized nonpharmacological interventions. App- and sensor-based approaches combining multimodal sensors (actimetry and other modalities) and caregiver information are innovative ways to support the understanding of CB for family caregivers.; Objective: The main aim of this study is to describe the design of a feasibility study consisting of an outcome and a process evaluation of a newly developed app- and sensor-based intervention to manage CB of PwD for family caregivers at home.; Methods: In this feasibility study, we perform an outcome and a process evaluation with a pre-post descriptive design over an 8-week intervention period. The Medical Research Council framework guides the design of this feasibility study. The data on 20 dyads (primary caregiver and PwD) are gathered through standardized questionnaires, protocols, and log files as well as semistructured qualitative interviews. The outcome measures (neuropsychiatric inventory and Cohen-Mansfield agitation inventory) are analyzed by using descriptive statistics and statistical tests relevant to the individual assessments (eg, chi-square test and Wilcoxon signed-rank test). For the analysis of the process data, the Unified Theory of Acceptance and Use of Technology is used. Log files are analyzed by using descriptive statistics, protocols are analyzed by using documentary analysis, and semistructured interviews are analyzed deductively using content analysis.; Results: The newly developed app- and sensor-based AT has been developed and was evaluated until July in 2018. The recruitment of dyads started in September 2017 and was concluded in March 2018. The data collection was completed at the end of July 2018.; Conclusions: This study presents the protocol of the first feasibility study to encompass an outcome and process evaluation to assess a complex app- and sensor-based AT combining multimodal actimetry sensors for informal caregivers to manage CB. The feasibility study will provide in-depth information about the study procedure and on how to optimize the design of the intervention and its delivery.; International Registered Report Identifier (irrid): DERR1-10.2196/11630.

Access source material through DOI

Caring by telecare? A hermeneutic study of experiences among older adults and their family caregivers

Aims and Objectives: To obtain a deeper understanding of the persistent use of telecare for older adults and their family caregivers.; Background: Telecare is seen as part of the solution in home care services for ageing in place. Previous studies have shown that telecare is a complex intervention, and there is still a poor understanding of older adults' and their family caregivers' experience with the use of telecare.; Design: This study used a qualitative hermeneutic research approach.; Method: Interviews were conducted with 18 older adults and follow-up interviews were conducted with 15 participants after 5-6 months of use. In addition, interviews were conducted with seven close family caregivers. The COREQ checklist was used.; Results: The older adults expressed increased safety, security and independence. Although some of them experienced challenges, they continued to use the services. Furthermore, the findings revealed needs that telecare could not cover. Family caregivers reported that telecare eased their concern for a time. However, they felt increased responsibility which led to ambivalent feelings between wanting to comply with the older adults' desire to live at home and the stress and concern this caused.; Conclusion: Telecare does improve care offered by home care services. However, it must be considered in the context of assistance and other measures and be provided in response to each individual's specific needs. Family caregivers may benefit from telecare, but telecare may also add to their care burden.; Relevance To Clinical Practice: There is a need for increased knowledge and information about telecare and for follow-up from home care services. Family caregivers are important for promoting sustainable use, but a support system and better cooperation with home care services is needed.

Access source material through DOI

Caring for the person with cancer and the role of digital technology in supporting carers

Purpose: Informal carers may experience a range of unmet needs during the caring period and, at times, lack support to adequately manage care of the person with cancer and balance personal family and work commitments. The aim of this study was to understand the needs of informal carers of people with cancer and how digital technology may be used to address carers' needs.; Methods: Focus groups and semi-structured interviews were conducted with 45 carers. Carers discussed supports and services they used to address their needs, barriers to accessing support, and how digital technology could assist in meeting their needs.; Results: Carers used informal support such as friends and family and formal support including respite and community groups during the caring period. Barriers to accessing support included reluctance to seek external help, sensitivities associated with prioritising carers' needs over patients' needs, and the adequacy of information received. Technology was reported to have the potential to allow carers' privacy to seek support; however, carers' attitudes towards technology differed.; Conclusions: Carers require support during the caring period to help balance their own needs with the needs of the person receiving cancer treatment. Digital technology may provide an opportunity to deliver support to carers; however, further research is needed to assess the appropriateness of these interventions to inform improved health outcomes for this vulnerable group.

Access source material through DOI

Efficacy of Internet-Delivered Mindfulness for Improving Depression in Caregivers of People With Spinal Cord Injuries and Chronic Neuropathic Pain: A Randomized Controlled Feasibility Trial

Objectives: To explore the feasibility and efficacy of web-based mindfulness training for carers of people with spinal cord injury (SCI).; Design: Randomized controlled feasibility study with 3-month follow-up.; Setting: Community setting.; Participants: Spouses or family caregivers (N=55) of people with SCI and chronic neuropathic pain were recruited via the direct care team and advertisements. Participants were older than 18 years (no upper age limit), with Internet access for the duration of the study. Participants were randomly allocated to an 8-week online mindfulness training intervention (n=28), or to receive 8 weeks of psychoeducational materials on SCI and chronic pain (n=27).; Interventions: An established web-based, mindfulness training course was delivered over 8 weeks. Participants completed 10 minutes of mindfulness practices, twice per day, 6 days per week, totaling 960 minutes. The control group received a weekly e-mail with psychoeducational materials (based on the established elements) on SCI and pain for 8 weeks.; Main Outcome Measure: Depression severity.; Results: Mindfulness reduced depression severity more than psychoeducation at T2 (mean difference= -.891; 95% confidence interval,-1.48 to -.30) and T3 (mean difference=-1.96; 95% confidence interval, -2.94 to -.97). Mindfulness training also reduced anxiety at T2 (mean difference=-.888; 95% confidence interval, -1.40 to -.38) and T3 (mean difference=-2.44; 95% confidence interval, -3.20 to -1.69).; Conclusions: Results indicate that Internet-delivered mindfulness training offers unique benefits and is viable for caregivers of people with SCI and chronic neuropathic pain. Further work should explore the feasibility of combined education and mindfulness training incorporating both patient and caregiver, for optimum benefit.

Access source material through DOI

Six-Month Effectiveness of Remote Activity Monitoring for Persons Living With Dementia and Their Family Caregivers: An Experimental Mixed Methods Study

Background and Objectives This study aimed to evaluate if and how remote activity monitoring (RAM) improves caregiver outcomes for family members providing care for persons living with Alzheimer's disease or a related dementia (ADRD). Research Design and Methods We conducted an embedded experimental mixed methods study of 132 persons living with ADRD and their family caregivers (n = 64 randomly assigned to RAM treatment condition). In addition to baseline and 6-month quantitative survey data on context of care, primary objective stressors, resources, self-efficacy/competence, and distress collected from caregivers, 6-month RAM review checklists contained open-ended, qualitative information on perceived acceptability of the technology. Results The RAM system did not exert statistically significant effects on caregiving outcomes over a 6-month period. However, qualitative analyses identified several potential moderators of RAM technology effectiveness that were subsequently tested in post-hoc repeated measures analyses of variance. Caregivers who utilized RAM technology and cared for relatives with: (a) less severe cognitive impairment; and (b) difficulty navigating around the home were more likely to indicate statistically significant increases in competence and self-efficacy, respectively. Discussion and Implications We found that the early months spent calibrating and modifying RAM are potentially challenging for families, which may prevent this technology from improving caregiving outcomes during initial months of use. Remote activity monitoring may work optimally for caregivers of persons living with ADRD in specific situations (e.g. earlier stages of dementia; wandering risk), which suggests the need for appropriate needs assessments that can better target such innovations.

Access source material through DOI

Telephone interventions, delivered by healthcare professionals, for providing education and psychosocial support for informal caregivers of adults with diagnosed illnesses

Plain language summary

Background Caregivers providing care to a family member, friend, or neighbour experience the role in differing ways. Some caregivers may find themselves in a caring role for which they are ill prepared and professional support is essential. This review examined whether telephone support interventions delivered by healthcare professionals had positive benefits on a range of outcomes including quality of life, burden (the experience of strain or load), skill acquisition (e.g. problem‐solving), psychological health (e.g. depression), knowledge, physical health, family functioning, satisfaction, or cost, for unpaid caregivers in the community. A telephone support intervention is one that is delivered via the telephone and designed to provide knowledge, advice, or help to caregivers to enable them to manage their own well‐being or that of the person they care for. It is an easily accessible method of providing support irrespective of geographical location. Studies that compared telephone support to usual care or to non‐telephone‐based professional support interventions were included.

Study characteristics We included 21 studies involving 1,690 caregivers caring for persons with a range of diagnosed conditions. Caregiver ages ranged from 19 years to 87 years. Most were female and caring for a family member. The majority were spouses, in particular wives, except for one study that mainly focused on adult children. Most caregivers had greater than secondary school education. Eighteen studies reported funding from reputable sources.

Key results Nineteen studies (18 studies contributing data) compared telephone support interventions and usual care. Telephone support interventions probably have little or no effect on caregiver quality of life (4 studies, 364 caregivers) and may have little effect on burden (9 studies, 788 caregivers) compared to usual care on completion of the intervention. Although anxiety may be slightly reduced and preparedness to care slightly improved following the intervention, we are uncertain about the effects on depression and overall, telephone interventions may have little or no effect on the outcomes assessed by this review. High satisfaction with the intervention was reported in six studies that measured this outcome, but no comparative data from usual care groups was reported. Two studies compared telephone and non‐telephone‐based support interventions. There may be little or no evidence of an effect of telephone support when compared non‐telephone‐based support interventions for any reported outcome. No adverse events were measured or reported in any of the included studies.

Quality of evidence The quality of the evidence was assessed as very low to moderate across outcomes, thus reducing confidence in the findings. Many of the results were based on data from single studies with few participants. Larger well‐designed studies are required to determine the effects of telephone support interventions.

Access source material through DOI

Informal caregiving experiences in posttraumatic stress disorder: A content analysis of an online community

This study explored the experiences of individuals who self‐identify as providing support to a friend, family member, or significant other with posttraumatic stress disorder (PTSD). We analyzed and coded a total of 345 posts from an online support forum, with reference to 13 categories (finances, life interference, venting/emotional expression, maltreatment, sexual behavior, distress, prevented expression, physical health, communication, no personal space, isolation, and compassion fatigue). Categories for coding were established a priori and based on previous literature about caregiving and supporting. Results suggested that informal PTSD caregivers experience concerns involving interpersonal relations, emotional turmoil, and barriers to care for themselves and the individual they are caring for. This study provides a preliminary examination of the experiences and concerns of PTSD caregivers. Implications and suggestions for future research are discussed. 

Access source material through DOI

Evaluation of Technology-Based Interventions for Informal Caregivers of Patients With Dementia-A Meta-Analysis of Randomized Controlled Trials

Objective: The aim of this study was to estimate the efficacy of technology-based interventions for informal caregivers of people with dementia (PWD). Methods: PubMed, PsycINFO, and Cochrane Library databases were searched in August 2018, with no restrictions in language or publication date. Two independent reviewers identified 33 eligible randomized controlled trials (RCTs) conducting a technology-based intervention for informal carers of PWD. Meta-analyses for the outcome measures caregiver depression and caregiver burden were conducted with subgroup analyses according to mode of delivery (telephone, computer/web-based, combined interventions). To assess methodologic quality, the Cochrane risk-of-bias assessment was rated. Results: Meta-analyses revealed a small but significant postintervention effect of technology-based interventions for caregiver depression and caregiver burden. Combined interventions showed the strongest effects. Conclusion: Technology-based interventions have the potential to support informal caregivers of PWD. Because of advantages such as high flexibility and availability, technology-based interventions provide a promising alternative compared with "traditional services," e.g., those for people living in rural areas. More high-quality RCTs for specific caregiver groups are needed.

Access source material through DOI

Telephone-based aftercare groups for family carers of people with dementia: study protocol of the Talking Time - REHAB project

Background: More than one million people in Germany live with dementia. Most of these people are cared for at home in the family setting. Supporting and caring for people with dementia is time-consuming, and family carers often have high stress levels and are at an increased risk of becoming physically and mentally ill. Medical rehabilitation (rehab) helps to relieve family carers and provide them with strategies to cope with stress. The aim of this study is to improve the sustainability of a multimodal rehab program for family carers of people with dementia.; Research Question: can the effects of this rehab be maintained through telephone-based aftercare groups following the rehab program?; Methods: A prospective randomized controlled longitudinal trial is performed. The intervention group (IG) participates in telephone-based aftercare groups; the control group (CG) receives treatment as usual. For evaluation, a mixed-methods approach is used. The effects of the intervention are quantitatively evaluated by written questionnaires at four measuring points (pre- and post-rehab, as well as 6 and 12 months after the end of rehab).; Primary Outcome: participation (IMET).; Secondary Outcomes: Depressive Mood State CES-D, General Complaints SCL-90-R, Subjective Quality of Life WHOQUOL-BREF, Social Support F-SozU, performance in different areas of life, single scales, and support offers (single items). The intervention process is evaluated through qualitative interviews and focus groups with regard to the acceptance of and satisfaction with the aftercare offered; in addition, a health economic evaluation is performed using the EQ-5D questionnaire. Rehabilitants are included in the study (N = 103 each in the IG and CG) who, accompanied by their family members with dementia, participate in the rehab measure in Ratzeburg. The IG participates monthly in 6 telephone aftercare groups over a period of 6 months. Typical stress situations are discussed and worked on.; Discussion: Upon successful evaluation, the offer to participate in telephone-based aftercare groups can be firmly established in the participating rehab clinic. Through minor adjustments, the offer would also be suitable for carers of physically ill people and for non-nursing-specific rehabilitation indications.; Trial Registration: German Clinical Trials Register: DRKS00013736 , May 14, 2018.

Access source material through DOI

Brief telephone counselling is effective for caregivers who do not experience any major life events - caregiver-related outcomes of the German day-care study

Background: To date, there has been a dearth of scientifically tested, established intervention concepts focussed on supporting informal caregivers and embedded in routine health care structures. The aim of this study was to assess effects of a brief telephone intervention for caregivers of persons with cognitive impairment (PCIs) on caregivers' depressiveness and subjective burden.; Methods: A two-arm cluster-randomised controlled intervention study was carried out at 32 German day-care centres. During the six-month intervention period, informal caregivers in the intervention group (n = 205) received counselling in three phone calls focussed on stress reduction, development of self-management strategies, and how to deal with challenging behaviours. Both the control group (n = 154) and the intervention group were free to take part in any support programmes offered by the German Health Care System (TAU). Caregivers' subjective burden and depressiveness were measured with the Burden Scale for Family Caregivers - short version (BSFC-s) and the WHO-5 Well-Being Index (WHO-5). Outcomes were assessed by means of computer-assisted telephone interviews (CATIs) at baseline and at the end of the six-month intervention phase. Multiple regression analyses were used to show the influence of group allocation.; Results: After the intervention phase, group allocation was not found to significantly predict caregivers' subjective burden or depressiveness. The baseline scores (p < 0.001) were the only significant predictors of change in both outcomes. However, sensitivity analyses for caregivers who did not experience any events that they felt were major (in a negative or positive sense) during the six months (n = 271) showed that group allocation (p < 0.05) was a significant predictor of positive change in both outcomes (BSFC-s: Δ-1.3, [- 2.4, - 0.3], Cohen's d = 0.27; WHO-5: Δ1.5, [0.4, 2.7], Cohen's d = 0.26). Effect sizes were highest in the subgroup of caregivers of people with mild dementia (BSFC-s: Cohen's d = 0.43; WHO-5: Cohen's d = 0.42).; Conclusions: A "low-dose" psychoeducative telephone intervention designed to empower caregivers is effective, especially in an early stage, if the overlap between the effect of the intervention and the effect of events that are experienced as major events in the caregiver's life is considered.; Trial Registration: Identifier: ISRCTN16412551 (Registration date: 30 July 2014, registered retrospectively).

Access source material through DOI

Psychological outcomes of eCare technologies use for informal carers: A scoping study

Background The use of eCare technologies could address some of the challenges related to demographic changes and decreased care potential. However, little is known about eCare technologies' potential in relation to the psychological outcomes for informal carers. Research aim This study aims to provide an overview of the psychological outcomes of eCare technologies use for informal carers. Methodology A scoping study was done, where peer reviewed papers, written in English, investigating the use of eCare technologies in informal care and their psychological outcomes on informal carers, were included. Non-scientific studies, and studies which focused on psychological counselling or training through the Internet or phone, were excluded. The data search was conducted in Academic search complete, Scopus, ProQuest and Science Direct databases, from 12 October 2017 to 17 October 2017 and included 16 studies published since 2013. Results Six psychological outcomes were identified (peace of mind, reassurance, anxiety, depression, stress and burden). Out of those psychological outcomes, positive outcomes of eCare technologies use for informal carers were counted 37 times and negative outcomes only eight, suggesting a positive prevalent pattern of eCare technologies use for informal carers. Conclusion The outlined interplay between the positive and negative psychological outcomes suggest that the use of eCare technologies in informal care warrants further research, for instance whether the eCare technologies actually fulfil older people and informal carers' needs. 

Access source material through DOI
Original source (some source materials require subscription or permission to access)

An economic evaluation of a telephone outcall intervention for informal carers of cancer patients in Australia: An assessment of costs and quality-adjusted-life-years

Objective: Carers of people with cancer provide uncompensated care that is often physically, emotionally, and financially demanding, which results in neglect of their own health. This study's objective was to conduct an economic evaluation following a randomised control trial (RCT) involving a proactive telephone outcall intervention aimed at improving health outcomes among carers of cancer patients. Methods: The trial was a single-blind, multicentre, RCT conducted across four Australian health services, comprising three outcalls from trained Cancer Council 131120 (Cancer Council telephone and information support services) nurses compared with three phone call reminders of the availability of 131120 services (control group). Outcalls consisted of telephone contacts to the caregivers initiated by the Cancer Council nurses. The primary trial outcome was reduced carer burden. Health care resource use was measured using a resource use questionnaire (RUQ), and costs were presented in 2013 $(AUS). Quality-adjusted-life-years (QALYs) were also used as health outcomes. An incremental cost-effectiveness ratio (ICER) was calculated, with bootstrapping used to quantify sampling variability. A $50 000 per QALY-gained willingness-to-pay threshold was used. Sensitivity analyses were conducted. Results: Results showed that the total mean QALYs-gained were higher (0.02 QALYs, P = 0.01) in the control group, and total mean costs were lower in the control group ($477, P < 0.001) over the trial duration. The intervention group was dominated by the control group. Results were robust to sensitivity analyses. Conclusions: Results suggest policy makers should not adopt this intervention into routine health care in its current form. Further research into the efficacy and cost-effectiveness of telephone-based interventions for carers is required. 

Access source material through DOI

Development of an mHealth application for family carers of people with dementia: A study protocol

Background: The progressive and complex nature of dementia demands carers have specific knowledge and training. However, often carers do not have adequate knowledge and skills, particularly for functional disability care. Aim: This study aims to develop and test the feasibility of an educational and supportive mHealth/smartphone application that addresses the needs of family carers of people with dementia related to functional disability of care recipients. Methods: This mixed method study consists of three phases. In phase one, an online survey and individual interviews with carers will be conducted to assess their needs related to management of functional disability and the development of an mHealth application. Additionally, experts will be consulted to identify their opinions on application development. In phase two, using information from phase one, an mHealth application will be designed and developed. In phase three, a feasibility study will be conducted with carers to identify usability, user adherence, acceptance and experiences with the application. Discussion: This study will generate new knowledge about the needs of carers related to the management of functional disability of people with dementia and the use of smartphones for health-seeking behaviours, and will develop an mHealth application for carers to address the needs related to functional disability care. Conclusion: A mixed method study was designed to develop a user-centred educational and supportive mHealth app for family carers to address needs related to the functional disability of people with dementia consisting of three phases: needs assessment, the designing of the app and a feasibility study.

Access source material through DOI

Chronic Grief Management: A Live-Streaming Video, Group-Based Intervention for Family Caregivers of Individuals With Dementia in Long-Term Care

Family caregivers of individuals with Alzheimer's disease and related dementias (ADRD) experience long-term mental health effects. Although caregivers who place relatives in long-term care (LTC) experience increased depression, anxiety, and chronic grief post-placement, interventions to improve caregivers' mental health have focused mainly on in-home care. Current researchers previously tested a group-based Chronic Grief Management Intervention (CGMI) with ADRD caregivers of individuals in LTC, with significant effects on caregiver mental health outcomes. In the current study, researchers adapted the CGMI for synchronous online video using Adobe® ConnectTM and iPads® (Chronic Grief Management—A Live-Streaming, Online Intervention [CGMI-V]). Specific aims were to test feasibility of digital delivery of the CGMI-V and explore caregivers' online group experience. Researchers assessed participants at baseline for sociodemographic information and at the end of the program with a four-item satisfaction survey and focus group. Digital delivery of the CGMI-V was feasible and caregiver satisfaction was high.

Access source material through DOI

Lifeworld in co-designing with informal carers

Purpose: The purpose of this paper is to reflect on carers’ experiences of being involved in the development of a web-based support programme for carers of people with heart failure (CPwHF), and discuss the challenges related to their involvement in the development process. The focus was on the different phases in the project as well as the methodological challenges and opportunities that occurred in the user group sessions conducted. Design/methodology/approach: This research adopt an explorative design studying a co-design process to develop an information and communication technology based support programme for and with CPwHF. Habermas’ concepts of lifeworld and system are used as a theoretical framework to analyse the co-design process employed in the study. Findings: Reflecting on the co-design approach adopted, the findings highlight the methodological challenges that arise with carer involvement and the possible tensions that occur between researchers’ ambitions to include users in the design process, and the goal of developing a product or service, in the different phases of the design process. Originality/value: Findings highlight that there is a tension between the system and lifeworld in the co-design process which are not totally compatible. The paper highlights that there is a need to develop flexible and reflexive human-centred design methodologies, able to meet carers’ needs and ideas, and at the same time balance this with proposed research outcomes. 

Access source material through DOI

Delivering problem‐solving therapy to family caregivers of people with cancer: A feasibility study in outpatient palliative care

Objective In response to the well‐documented need for evidence‐based cancer caregiver support, we examined the feasibility of problem‐solving therapy for family caregivers of cancer patients receiving outpatient palliative care and investigated the impact of problem‐solving therapy on family caregivers' anxiety, depression, and quality of life. Methods We conducted a feasibility study of a structured problem‐solving therapy intervention delivered to family caregivers of cancer patients receiving outpatient palliative care from an academic health center in the Midwestern United States. Participants (N = 83) were randomly assigned to receive usual care or usual care plus a problem‐solving therapy intervention, which was delivered over three sessions via web‐based videoconferencing or telephone. Descriptive statistics were used to determine feasibility relative to recruitment, retention, and fidelity to core intervention components. Outcome data were analyzed using ordinary least squares multiple regression. Results Problem‐solving therapy for family caregivers of patients with cancer was found to be highly feasible in the outpatient palliative care setting. Caregivers who received problem‐solving therapy reported less anxiety than those who received only usual care (P = 0.03). No statistically significant differences were observed for caregiver depression (P = 0.07) or quality of life (P = 0.06). Conclusions Problem‐solving therapy is a feasible and promising approach to reducing cancer family caregivers' anxiety in the outpatient palliative care setting. Further testing in multiple sites is recommended.

Access source material through DOI

266User-Centered Design of a Mindfulness Application to Support Older Informal Carers

Background: Mindfulness-based interventions (MBIs) have grown in popularity in recent years and have been shown to reduce stress and increase quality of life among older informal carers. A digital application delivering MBIs has been iteratively designed based on user-centered designed principles and aims to support older informal carers to manage stress and sleep. We describe a qualitative study with older informal carers and the resulting digital application. Methods: A qualitative study with 20 older adults took place over a 2-year period. Requirements gathering consisted of focus groups, interviews, and usability testing with older adults and informal carers. A high-fidelity mock-up of an application was designed and user-testing sessions held with five participants to gauge usability and effectiveness. Results: Focus group participants felt stress reduction is a significant issue which affects overall wellbeing, with a consensus that stress can have an adverse effect on sleep. An overarching theme throughout the informal carer interviews was carer burden and the sense of being overwhelmed. The sense of constant worry was a theme that also emerged, which could be addressed by the present moment focus of mindfulness (Helmes & Ward 2015 https://doi.org/10.1080/13607863.2015.1111862, Visser et al. 2015 https://doi.org/10.1007/s12671-014-0311-5). Usability testing sessions revealed previously overlooked user experience and interface issues, including icons and data visualizations. Analyses of these user interactions and qualitative feedback allowed for further iterations in the design cycle, meeting guidelines for best practice in a user-centred design approach. Conclusion: Insights from the requirements gathering and testing sessions provided an understanding of parameters of health important to older adults, feelings towards selfmonitoring, preferences for data visualizations, and attitudes to MBIs. The resulting application has been designed for older informal carers to manage stress through MBIs as well as monitor activity and sleep through tracking, data visualizations and educational advice.

Access source material through DOI

Experiences of patients with stroke and their caregivers with caregiver-mediated exercises during the CARE4STROKE trial

Purpose: Caregiver-mediated exercises are a novel way of delivering augmented exercise therapy for patients with stroke, in which patients do additional therapeutic exercises together with a caregiver. This explorative qualitative study is part of the CARE4STROKE trial and focused on how participants manage these exercises together. The research questions were: (1) how do the patient-caregiver couples exercise together? and (2) what does exercising together bring about, besides more hours of practice?; Methods: Semi-structured interviews were conducted with patients and caregivers who participated in the CARE4STROKE intervention. Inductive thematic data analysis was applied.; Results: Seven patients and seven caregivers were interviewed. Three different role-dynamics were found during caregiver-mediated exercises: (1) patient in control, (2) in concert, and (3) the caregiver as informal carer. In addition, three themes were identified about what exercising together brings about: (a) tailor-made exercises through active involvement, (b) preparation for the home situation, and (c) opportunity to be involved.; Conclusion: Different role-dynamics are at play in caregiver-mediated exercises, and it is important for participating staff to be aware of their possible effects on the strain of patient or caregiver. Caregiver-mediated exercises were found to enhance individualization of the treatment plan and preparation for home discharge. Implications for rehabilitation Caregiver-mediated exercises, in which a caregiver does exercises with a patient, are currently under investigation as a new form of augmented exercise delivery after stroke Doing exercises together seems to make patient and caregivers actively involved in rehabilitation, which they appreciate, and which seems to help them prepare for the home situation Caregiver selection and monitoring role-dynamics during exercising is an important task of the rehabilitation team.

Access source material through DOI

Why the caregivers of bipolar patients need to be in constant touch with a physician: A qualitative study of text messages from patient caregivers to a physician

Background: The variety of caregiver's needs of bipolar patients signifies the importance of performing dedicated interventions to help this group of caregivers based on the cultural conditions of the country in which they live; the present study therefore seeks to address this issue through a different method. Methods: The families of 28 patients with bipolar disorder type 1 who were treated for at least two months by a single psychiatrist gradually entered the study over a six-month period. They received the phone number of the psychiatrist in attendance as soon as the patient was in remission according to the same psychiatrist's interview. A total of 1908 texts were sent and received and each family sent an average of 68.14 text messages during the three years, with the minimum being 40 and the maximum 83. All the text messages were transcribed verbatim and were evaluated by three faculty members through the qualitative content analysis method. Results: In this study we found three themes and there were some codes in each theme. 1. The first theme was "Training" which the caregivers requested advice about symptoms and tests, the course of the disease, assurance, medication side-effects and their management, how to stop smoking, how to control high-risk behaviors and double checking appointments with the physician, making for a total of 1079 text messages received. 2. The second theme was "Reporting" which contained a description of emergency symptoms and requesting advice, reporting response or no response to the medications, reporting medication adherence and dosage taken. 3. The third theme: "The expression of feelings" including the expression of gratitude, saying congratulations on national and other celebrations and expressing anger and hatred. Conclusion: Overall, the caregivers of patients with bipolar disorder have many needs; meeting these needs affects the patients' outcome and the caregivers, but requires a greater attention by the healthcare team and it is necessary for these needs to be evaluated in the context of each distinct country.

Access source material through DOI

Feasibility of implementing an electronic social support and resource visualization tool for caregivers in a neuro-oncology clinic

Purpose: The goals of this study were to assess the feasibility of a web-based application-electronic Social Network Assessment Program (eSNAP)-to automate the capture and visualization of family caregiver social network data of neuro-oncology patients. Methods: Caregivers were recruited from a neuro-oncology clinic at an NCI-designated comprehensive cancer center. Participants completed baseline questionnaires on a laptop in clinic assessing demographic characteristics. After baseline, participants were randomly assigned to either create a social network visualization using eSNAP (intervention) or to usual care (control) condition. Those who used eSNAP provided likeability/usability data. All participants were asked to complete follow-up questionnaires at 3 and 6 weeks after baseline to determine feasibility of longitudinal study. Results: We recruited 40 caregivers of patients with primary malignant brain tumor to participate in this study. Participants rated eSNAP usability and likeability highly, indicating that eSNAP would help them consider their available social support. At 3 weeks, 90% of participants completed questionnaires and 82.5% completed questionnaires at 6 weeks. Conclusions: There is a need to encourage family caregivers of patients with primary malignant brain tumor to engage their existing social network resources to help alleviate caregiver burden. Our findings suggest that our web-based application to address this issue is feasible to implement with high usability and likeability. This pilot study identified minor changes to the intervention to improve effectiveness and has implications for future research in this understudied population.Trial Registration: clinicaltrials.gov, protocol number NCT03026699.

Access source material through DOI

Outcomes of an electronic social network intervention with neuro-oncology patient family caregivers

Introduction: Informal family caregivers (FCG) are an integral and crucial human component in the cancer care continuum. However, research and interventions to help alleviate documented anxiety and burden on this group is lacking. To address the absence of effective interventions, we developed the electronic Support Network Assessment Program (eSNAP) which aims to automate the capture and visualization of social support, an important target for overall FCG support. This study seeks to describe the preliminary efficacy and outcomes of the eSNAP intervention.; Methods: Forty FCGs were enrolled into a longitudinal, two-group randomized design to compare the eSNAP intervention in caregivers of patients with primary brain tumors against controls who did not receive the intervention. Participants were followed for six weeks with questionnaires to assess demographics, caregiver burden, anxiety, depression, and social support. Questionnaires given at baseline (T1) and then 3-weeks (T2), and 6-weeks (T3) post baseline questionnaire.; Results: FCGs reported high caregiver burden and distress at baseline, with burden remaining stable over the course of the study. The intervention group was significantly less depressed, but anxiety remained stable across groups.; Conclusions: With the lessons learned and feedback obtained from FCGs, this study is the first step to developing an effective social support intervention to support FCGs and healthcare providers in improving cancer care.;

Access source material through DOI

Moving family interventions into the real world: What matters to oncology stakeholders?

Background: Family interventions targeting patients and/or informal caregivers are beneficial, but few have been integrated in oncology clinical care. Understanding diverse stakeholder perspectives may inform implementation and dissemination efforts.; Methods: We are currently conducting a randomized controlled trial of CareSTEPS, a telephone-based intervention for caregivers of advanced lung cancer patients. CareSTEPS seeks to improve caregiver and patient self-care behaviors, quality of life, and satisfaction with care. With an eye toward integrating CareSTEPS into clinical care, semi-structured interviews were conducted with 7 experts in integrated care [practice thought leaders] and 26 individuals representing different oncology stakeholder groups (i.e., potential end users of CareSTEPS including counselors, social workers, nurse specialists, and psychologists) [N = 13], decision-makers, including physicians and administrators [N = 6], and key dissemination partners, including representatives from cancer and caregiving advocacy groups [N = 7]). Questions focused on existing caregiver support services, barriers to integrating care for caregivers in routine patient care, and possible models for clinical uptake and dissemination. Interviews were transcribed and analyzed using directed content analysis.; Results: Stakeholders noted a mismatch between caregiver needs and services offered, and expressed interest in broader service offerings. Barriers for integrating caregiver support into clinical care included inadequate funding, lack of interdisciplinary training among providers, and concern that research-based interventions are often not flexible enough to roll out into clinical practice. To secure buy-in, stakeholders noted the importance of evaluating intervention cost, cost savings, and revenue generation. Possible avenues for dissemination, through bottom-up and top-down (e.g., policy change) approaches, were also discussed.; Conclusions: Findings highlight the importance of evaluating outcomes important to diverse oncology stakeholder groups to speed translation of research into practice. They also suggest that pragmatic trials are needed that allow for flexibility in the delivery of family interventions and that consider the resource limitations of clinical care.

Access source material through DOI

Information sharing across generations and environments (InfoSAGE): study design and methodology protocol

Background: Longevity creates increasing care needs for healthcare providers and family caregivers. Increasingly, the burden of care falls to one primary caregiver, increasing stress and reducing health outcomes. Additionally, little has been published on adults', over the age of 75, preferences in the development of health information sharing with family members using online platforms. This study aims to assess a novel, Internet based, family-centric communication and collaboration platform created to address the information needs of elders and their informal caregivers in a community setting.; Methods: This study is an internet-based, open prospective cohort study, enrolling dyad pairs of one adult over the age of 75 with one informal caregiver. Dyads will be offered to use the InfoSAGE online platform without prospective assignment. Participants will consent using an online process that enables participation from any location and shares important study and privacy details. The platform will enable the capture of search queries and tracking of functions such as tasks and discussions. Surveys every six months assess health status, health and social needs, and caregiver burden using validated instruments over a two-year period. We will use a mixed methods approach, utilizing qualitative survey data along with website usage analytic data.; Discussion: Analysis of the longitudinal usage and survey data will help to examine the patterns of family communication and health information seeking as the central older adult ages. We will use the study data to inform design recommendations relevant to a complex mixture of users, with special consideration to the needs of older adult users and potential physical limitations.

Access source material through DOI

Digital Technology for Caregivers of People With Psychosis: Systematic Review

Background: Psychotic disorders are severe mental health conditions that adversely affect the quality of life and life expectancy. Schizophrenia, the most common and severe form of psychosis affects 21 million people globally. Informal caregivers (families) are known to play an important role in facilitating patient recovery outcomes, although their own health and well-being could be adversely affected by the illness. The application of novel digital interventions in mental health care for patient groups is rapidly expanding; interestingly, however, far less is known about their role with family caregivers.; Objective: This study aimed to systematically identify the application of digital interventions that focus on informal caregivers of people with psychosis and describe their outcomes.; Methods: We completed a search for relevant papers in four electronic databases (EMBASE, MEDLINE, PsycINFO, and Web of Science). The search also included the Cochrane database and manual search of reference lists of relevant papers. The search was undertaken in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses reporting guidelines.; Results: The search identified 9 studies derived from 8 unique datasets. Most studies were assessments of feasibility and were undertaken in the United States. Interventions were predominately Web-based, with a focus on improving the caregivers' knowledge and understanding about psychosis.; Conclusions: This study offers preliminary support for the feasibility and acceptability of digital interventions for psychosis in informal caregiver populations. However, the findings underpin a clear need for greater development in the range of caregiver-focused digital approaches on offer and robust evaluation of their outcomes. The use of digital approaches with caregiver populations seemingly lags someway behind the significant developments observed in patient groups.

Access source material through DOI

The effects of information and communication technologies on informal caregivers of persons living with dementia: A systematic review

Introduction: Information and communication technology (ICT) has emerged as promising to support health care consumers, including informal caregivers. This systematic review seeks to evaluate the state of the science of ICT interventions on the health of informal dementia caregivers.; Methods: We searched PubMed, CINAHL, Web of Science, and PsycINFO using concepts associated with ICT, dementia, and caregiver. Studies were assessed using the Quality Assessment Tool for Quantitative Studies.; Results: We identified 657 full-text publications. After removal of duplicates and title, abstract, and full-text screening, the quality of 12 studies was assessed. Studies varied in technology, implementation, results, and intervention evaluation.; Discussion: The methodological quality of the ICT intervention studies among dementia family caregivers was moderate to strong, yet outcome measurement was not uniform. The evidence is strongest for various forms of telephone-based interventions. However, there is a need for research that includes heterogeneous participants based on gender, race, and ethnicity.;

Access source material through DOI

Utilizing Internet-based recruitment and data collection to access different age groups of former family caregivers

As Internet accessibility grows among adults in the United States, researchers' utilization of Internet-based surveys and recruitment strategies has increased, but there is a paucity of knowledge about their use in different age groups of former dementia caregivers. The purpose of this secondary analysis is to describe 1) the use of Internet-based recruitment in obtaining a sample inclusive of young and middle aged (age 18–64), young-old (age 65–74), and older-old (age 75 and older) former dementia caregivers and 2) the feasibility of collecting data using an online survey in young and middle aged, young-old, and older-old former dementia caregivers. Utilizing convenience sampling, a four-step recruitment strategy encompassing a combination of Internet-based and non-Internet-based recruitment strategies was employed. Participants (N = 171) completed an online survey. Older-old, young-old, and young and middle-aged participants comprised 9%, 30%, and 61% of the sample respectively. All age cohorts provided minimal missing data using an online survey, but older-old participants required 15 additional minutes to complete the survey than young-old participants. Both cohorts of older adults were directed to the survey less frequently through online referral sources than young and middle-aged participants, and no older-old participants were referred via Facebook. All three age cohorts consisted of mostly white women. Internet-based surveys and recruitment were feasible among the age groups but may present challenges for the older-old and minorities. Further research on Internet-based data collection and recruitment is indicated in minority and older-old caregivers, focusing on trust, educational and financial disparities, and technological proficiency as potential barriers. Highlights • Caregivers of all ages provided minimal missing data using an online survey, but the oldest experienced more survey fatigue. • Internet-based referral sources are more commonly used by young and middle-aged caregivers than older caregivers. • Facebook may not be useful in recruiting older-old former dementia caregivers. • Across all age groups, Internet-based recruitment may not be sufficient to access a sample diverse in race and ethnicity.

Access source material through DOI

Implications of the use of migrant care work and web-based services on family caregivers' health

This article illustrates the implications of two recent trends on family carers' health: the employment of home-based migrant care workers; and the provision of web-based supports. The main factors traditionally associated with carers' health are used to analyse the results of a six-country study via a multilevel linear regression. Attention will be dedicated to the role of migrant care workers, who are often hired by private households to provide eldercare. Finally, web-based services for carers will be investigated by considering InformCare, a recently implemented European platform tested on a sample of carers from three countries (Germany, Italy and Sweden).

Access source material through DOI

InformCare: the European information hub on family care

An increasing amount of research in Europe – and beyond – has focused on the development of innovative solutions for providing support services to family carers of frail older people. This is especially the case in terms of web-based programmes. [...] There is clearly a role for well-designed and robustly supported web-based support platforms like InformCare in helping to sustain carers, deliver policy aims and ensure carer access to information, advice and support.

Access source material through DOI

Acceptability to patients, carers and clinicians of an mHealth platform for the management of Parkinson's disease (PD_Manager): study protocol for a pilot randomised controlled trial

Background: Parkinson's disease is a degenerative neurological condition causing multiple motor and non-motor symptoms that have a serious adverse effect on quality of life. Management is problematic due to the variable and fluctuating nature of symptoms, often hourly and daily. The PD_Manager mHealth platform aims to provide a continuous feed of data on symptoms to improve clinical understanding of the status of any individual patient and inform care planning. The objectives of this trial are to (1) assess patient (and family carer) perspectives of PD_Manager regarding comfort, acceptability and ease of use; (2) assess clinician views about the utility of the data generated by PD_Manager for clinical decision making and the acceptability of the system in clinical practice.; Methods/design: This trial is an unblinded, parallel, two-group, randomised controlled pilot study. A total of 200 persons with Parkinson's disease (Hoehn and Yahr stage 3, experiencing motor fluctuations at least 2 h per day), with primary family carers, in three countries (110 Rome, 50 Venice, Italy; 20 each in Ioannina, Greece and Surrey, England) will be recruited. Following informed consent, baseline information will be gathered, including the following: age, gender, education, attitudes to technology (patient and carer); time since Parkinson's diagnosis, symptom status and comorbidities (patient only). Randomisation will assign participants (1:1 in each country), to PD_Manager vs control, stratifying by age (1 ≤ 70 : 1 > 70) and gender (60% M: 40% F). The PD_Manager system captures continuous data on motor symptoms, sleep, activity, speech quality and emotional state using wearable devices (wristband, insoles) and a smartphone (with apps) for storing and transmitting the information. Control group participants will be asked to keep a symptom diary covering the same elements as PD_Manager records. After a minimum of two weeks, each participant will attend a consultation with a specialist doctor for review of the data gathered (by either means), and changes to management will be initiated as indicated. Patients, carers and clinicians will be asked for feedback on the acceptability and utility of the data collection methods. The PD_Manager intervention, compared to a symptom diary, will be evaluated in a cost-consequences framework.; Discussion: Information gathered will inform further development of the PD_Manager system and a larger effectiveness trial.; Trial Registration: ISRCTN Registry, ISRCTN17396879 . Registered on 15 March 2017.;

Access source material through DOI

Fulfilling the psychological and information need of the family members of critically ill patients using interactive mobile technology: A randomised controlled trial

Background Intensive care nurses may have an important role in empowering families by providing psychological support and fulfilling the family's pivotal need for information. Aim To determine whether ‘education of families by tab’ about the patient’s condition was more associated with improved anxiety, stress, and depression levels than the ‘education of families by routine’. Research design A randomized control trial of 74 main family caregivers (intervention: 39; control: 35). Setting An adult intensive care unit. Main outcome measures Depression Anxiety Stress Scale, and Communication and Physical Comfort Scale. Results Although information need satisfaction was not significantly different between intervention and control groups, the former reported significantly better depression score on Depression Anxiety Stress Scale comparing to the control group (p<0.01;η2=0.09) with a medium effect size. Reduction of anxiety in the intervention group were clinically significant. Conclusion The results suggest that use of ‘education of family by tab’ is promising for intensive care nurses to provide psychological support for family members. More studies are needed to investigate this aspect of family care for better psychological support and information need satisfaction that contributes to the evidence-based practice of intensive care nursing.

Access source material through DOI

Using telepresence for social connection: views of older people with dementia, families, and health professionals from a mixed methods pilot study

Objectives: To explore the acceptability of telepresence robots in dementia care from the perspectives of people with dementia, family carers, and health professionals/trainees, and investigate the utility of a social presence assessment tool, the Modified-Temple Presence Inventory (Modified-TPI), for people with dementia. Method: A mixed-methods pilot study conducted in a social robotics laboratory. Three participant groups (n = 22)–dyads of people with dementia and their carers (n = 5 respectively), and health professionals/trainees (n = 12)–participated in individual one-off intervention sessions with the telepresence robot, Giraff, with follow-up interviews. Sessions covered how to use Giraff, followed by interactive practice in making a video-call involving conversation and manoeuvring of Giraff. Participants with dementia experienced receiving a call made by their carer; healthcare professionals/trainees experienced making and receiving a call. Outcomes of interest were sense of presence [Modified-TPI], affective response (International Positive and Negative Affect Schedule [I-PANAS-S]; Observable Displays of Affect Scale [ODAS]), and attitudes and reactions to Giraff (semi-structured interviews). Results: Participants reported a sense of authenticity and social connection through the experience. They indicated positive social presence through Giraff, and significantly higher positive (mean score 18.77; ±4.00) than negative affect (mean score 8.05; ±1.76) on the I-PANAS-SF, and on the facial display subscale of the ODAS (positive–mean score 15.50; ±3.51 versus negative–mean score 4.00; ±0.00). Conclusion: Telepresence has potential use in situations where people with dementia require social connection. Studies with larger sample sizes, varied characteristics, and cost-effectiveness analysis are needed to inform the application of telepresence in healthcare practice.

Access source material through DOI

Effects of a caregiver-inclusive assistive technology intervention: a randomized controlled trial

BACKGROUND: The principal aim of this study was to investigate whether a caregiver-inclusive assistive technology intervention improved older care recipients' functional autonomy and decreased the perceived burden of their family caregivers compared to customary care. METHODS: The study was a single-blind, mixed-methods, randomized controlled trial with baseline data collection and follow-ups at six, 22-, and 58-weeks after baseline evaluation, which was prospectively registered (ClinicalTrials.gov Identifier: NCT01640470. Registered 11/21/2011). Dyads comprising a care recipient and family caregiver were randomly assigned to either a caregiver-inclusive experimental group (N=44) or a customary-care comparison group (N=46). Eligible care recipients were aged >=55 years and had one or more limitations with mobility or daily activities, and family caregivers provided at least four hours per week of assistance. Outcome measures were administered to both groups at baseline and at the three follow-up time points. The data collectors were blinded regarding participants' intervention group. The primary outcome measures were the Functional Autonomy Measurement System to assess care recipients' functional performance, and the Caregiver Assistive Technology Outcome Measure to assess caregivers' burden. Qualitative interviews examined participants' perceptions of the caregiver-inclusive and customary care interventions. RESULTS: The experimental intervention addressed significantly more dyad-identified problematic activities, but caregiver involvement was evident in both groups and outcomes were not significantly different over time. In both groups, care recipients' functional autonomy declined significantly (P<.01), and caregivers' activity-specific and overall burden decreased significantly (P<.01). CONCLUSIONS: Given the unintended congruence between the caregiver-inclusive and customary care interventions, the overall findings lend support for the provision of assistive technology to reduce caregiver burden. 

Access source material through DOI

Digital support platform: a qualitative research study investigating the feasibility of an internet-based, postdiagnostic support platform for families living with dementia

OBJECTIVES: To establish the feasibility of the Digital Support Platform (DSP), an internet-based, postdiagnostic tool designed for families living with a diagnosis of dementia. DESIGN: Qualitative methods using normalisation process theory as an analysis framework for semistructured interview transcriptions. SETTING: A community care setting in the South-East Scotland. PARTICIPANTS: We interviewed ten dyads of people with Alzheimer's, vascular or mixed dementia (PWD), and their family carers, who had been given and had used the DSP for at least twomonths. RESULTS: Our analysis revealed that the DSP was predominantly understood and used by the carers rather than PWD, and was used alongside tools and methods they already used to care for their relative. The DSP was interpreted as a tool that may be of benefit to those experiencing later stages of dementia or with physical care needs. Carers stated that the DSP may be of benefit in the future, reflecting a disinclination to prepare for or anticipate for future needs, rather than focus on those needs present at the time of distribution. PWD spoke positively about an interest in learning to use technology more effectively and enjoyed having their own tablet devices. CONCLUSIONS: The DSP was not wholly appropriate for families living with dementia in its early stages. The views of carers confirmed that postdiagnostic support was valued, but emphasised the importance of tailoring this support to the exact needs and current arrangements of families. There may be a benefit to introducing, encouraging, providing and teaching internet-enabled technology to those PWD who do not currently have access. Training should be provided when introducing new technology to PWD. 

Access source material through DOI

A “separation of worlds”: The support and social networks of family carers of people with dementia at the end of life, and the possible role of the internet

Caring for someone with dementia is one of the most challenging caring roles; however, the demands of the role towards the end of life often mean carers are unable to maintain face-to-face support. The aim of this study was to: (a) Explore the experiences of older (over 65 years) family carers of people with dementia of support towards the end of life; (b) Explore with family carers the role of the internet as a support for them at the end of life. Semi-structured interviews were conducted, with purposive sampling from general practice and research networks to recruit 20 current and former family carers aged 65 and over in England (2016–2017). Interviews were audio-recorded, transcribed, and analysed using thematic analysis. An overarching theme of the “separation of worlds” (the internal caring world and the outside world of society) was identified, with four sub themes: (a) the support role of relationships and social networks; (b) loss as a consequence of caring; (c) reconstruction of life as a carer; and finally; (d) life within and beyond the computer screen. This study demonstrates the complexity of social support at the end of life for family carers depicted in a model of two worlds. The internet can be seen as a viable approach to help carers maintain existing networks, reconstruct networks they have lost or developing new networks to meet their new needs and circumstances as a carer. Future support interventions should focus on a mixed model of technology and human interaction. 

Access source material through DOI

The Roles of Telehealth Tools in Supporting Family Caregivers: Current Evidence, Opportunities, and Limitations

Family caregivers need more information and training on caregiving as well as supportive tools to facilitate stress management and enhance their coping skills. In addition, family caregivers need social support and practical assistance. Telehealth tools, broadly defined as technology-based tools that bridge geographic distance, can be a promising method to deliver interventions designed for family caregivers and enhance access to resources and support. Telehealth technologies are especially important for caregivers living in rural areas or providing remote caregiving.

Access source material through DOI

CareACT - internet-based intervention for enhancing the psychological well-being of elderly caregivers – a study protocol of a controlled trial

Background: The rapid increase in the number of elderly family caregivers underlines the need for new support systems. Internet-delivered psychological interventions are a potential approach, as they are easy to access for family caregivers who are often homebound with their care recipient. This study examines the relative effectiveness of an internet-based acceptance and commitment therapy (ACT) intervention or a standardized institutional rehabilitation program, first, in reducing depressive symptoms, and second, in improving the well-being and quality of life of elderly family caregivers compared to a control group receiving support from voluntary family caregiver associations. Methods: 156 family caregivers aged 60 or more are studied in a quasi-experimental study design that compares three groups of family caregivers (Group 1; n = 65: a guided 12-week web-based intervention; Group 2, n = 52: a standardized institutional rehabilitation program in a rehabilitation center; Group 3, n = 39: support provided by voluntary caregiver associations). Data collection is performed at three time-points: pre-measurement and at 4 months and 10 months thereafter. Caregivers’ depressive symptoms as a primary outcome, and perceived burden, anxiety, quality of life, sense of coherence, psychological flexibility, thought suppression, and personality as secondary outcomes are measured using validated self-report questionnaires. Physical performance and user experiences are also investigated. Between-group differences in the effects of the interventions are examined using multiple-group modeling techniques, and effect-size calculations. Discussion: The study will compare the effectiveness of a novel web-based program in reducing depressive symptoms and improving the psychological well-being of elderly family caregivers, or a standardized institutional rehabilitation program representing usual care and a control group receiving support offered by voluntary caregiver associations. The results will expand the knowledge base of clinicians and provide evidence on effective strategies to improve the mental health and overall quality of life of elderly family caregivers. Trial registration: The study was retrospectively registered in www.clinicaltrials.gov (ClinicalTrials.gov Identifier: NCT03391596 on January 4, 2018.

Access source material through DOI

Effectiveness and usability of a web-based mindfulness intervention for caregivers of people with mental or somatic illness. A randomized controlled trial

No abstract - text selected from article:

Approximately 42.1 million family caregivers provided care to an adult with limitations in daily activities at any given point in time in the US in 2009 (Feinberg et al., 2011).  ... Tailored online interventions that incorporate behavior change techniques such as stress management can have positive effects on caregivers' psychological well-being (Guay et al., 2017). Web-based mindfulness interventions (MBI)2 show promising results with beneficial health effects for healthy and clinical samples (de Vibe et al., 2012). A feasibility study and randomized controlled trial of the current online MBI showed positive significant results for families living with MI with enhanced levels of mindfulness and self-compassion, and decreased levels of caregiver burden and perceived stress (Stjernswärd and Hansson, 2016a; Stjernswärd and Hansson, 2017), combined with good usability and subjective value when using the program (Stjernswärd and Hansson, 2016b). Usability refers to the extent to which a specific user can use a specific product to reach specific goals, with purposefulness, effectiveness, and satisfaction, in a given context (ISO, 1998). Ease of access and flexibility of use were strong motivators for use (Stjernswärd and Hansson, 2016b). More studies are called for to verify the intervention's effectiveness for extended groups of caregivers. ...The current effectiveness study was designed as a randomized controlled trial with an experimental group and a wait-list control group (WLC), with measurements at baseline (T1), post intervention (T2) and at a 3-month follow-up (T3) on primary and secondary outcomes, and usability, in order to explore the effectiveness of the web-based mindfulness program in supporting caregivers to cope with their situation. 

Access source material through DOI

Internet-based interventions aimed at supporting family caregivers of people with dementia: systematic review

Background: Caring for someone with dementia is one of the most challenging caring roles. The need for support for family caregivers has been recognized for some time but is often still lacking. With an aging population, demand on health and social care services is growing, and the population is increasingly looking to the internet for information and support. Objective: In this review, we aimed to (1) identify the key components of existing internet-based interventions designed to support family caregivers of people with dementia, (2) develop an understanding of which components are most valued by caregivers, and (3) consider the evidence of effectiveness of internet-based interventions designed to support family caregivers of people with dementia. Methods: We conducted a systematic search of online databases in April 2018. We searched reference lists and tracked citations. All study designs were included. We adopted a narrative synthesis approach with thematic analysis and tabulation as tools. Results: We identified 2325 studies, of which we included 40. The interventions varied in the number and types of components, duration and dose, and outcomes used to measure effectiveness. The interventions focused on (1) contact with health or social care providers, (2) peer interaction, (3) provision of information, (4) decision support, and (5) psychological support. The overall quality of the studies was low, making interpretation and generalizability of the effectiveness findings difficult. However, most studies suggested that interventions may be beneficial to family caregiver well-being, including positive impacts on depression, anxiety, and burden. Particular benefit came from psychological support provided online, where several small randomized controlled trials suggested improvements in caregiver mental health. Provision of information online was most beneficial when tailored specifically for the individual and used as part of a multicomponent intervention. Peer support provided in online groups was appreciated by most participants and showed positive effects on stress. Finally, online contact with a professional was appreciated by caregivers, who valued easy access to personalized practical advice and emotional support, leading to a reduction in burden and strain. Conclusions: Although mixed, the results indicate a positive response for the use of internet-based interventions by caregivers. More high-quality studies are required to identify the effectiveness of internet interventions aimed at supporting family caregivers, with particular focus on meeting the needs of caregivers during the different stages of dementia.

Access source material through DOI

The carers' covenant

Based on the findings from research, this report makes recommendations provide better support for carers. The 12 policy recommendations cover five key themes of financial assistance, employment, identification and support, support networks and technology. Together, the policies together form a covenant for carers. The research looked at who informal carers are and the amount of care they provide, explored the experience of informal carers through two focus groups, and looked at the support available for carers internationally. The research found that the number of informal carers and the amount of care they provide has increased in recent years; that carers are often extremely stretched and overworked as a result of their responsibilities; and that the UK lags behind eight other countries examined for their support for carers - Australia, Austria, Belgium, Denmark, Finland, Germany, Italy and Japan. It makes recommendations which aim to deliver greater financial security for informal carers, give them a better work/life balance, help ensure that carers are better identified, improve carers' access to peer support, and ensure that better use is made of the potential of technology to support carers. The recommendations include the introduction of a new Universal Carer’s Income for all carers providing more than 35 hours a week.

Original source (some source materials require subscription or permission to access)

Acceptance of Global Positioning System (GPS) technology among dementia clients and family caregivers

The purpose of this study was to examine the acceptance of Global Positioning System (GPS) used to help people with dementia, who are at risk for wandering in their communities. The authors used a mixed methods research approach that included use logs, pre and post paper-based questionnaires, and focus groups. Forty-five client-caregiver pairs (dyads) were included to use one of the GPS devices for an average of 5.8 months over a 1-year period. GPS acceptance was high; dyads were likely to continue using the GPS. According to the participants, the GPS provided caregivers peace of mind and reduced anxiety in dyads when clients got lost.

Access source material through DOI

Information and communication technology-mediated support for working carers of older family members: an integrative literature review

How best to support working carers is being paid increased attention across Europe and internationally. This article examines a largely unexplored area within the empirical literature, namely, information and communication technology-mediated support for working carers of older people. Using an integrative review methodology to draw on both quantitative and qualitative data, 14 studies were identified. Themes included making work–life balance easier, reducing the burden of caregiving and promoting well-being. Factors to consider in the design, implementation and evaluation of innovative support solutions for working carers are put forward. However, a lack of longitudinal studies and biased samples warrants further investigation.

Access source material through DOI

Impact of Internet-Based Interventions on Caregiver Mental Health: Systematic Review and Meta-Analysis

Background: The health of informal caregivers of adults with chronic conditions is increasingly vital since caregivers comprise a large proportion of supportive care to family members living in the community. Due to efficiency and reach, internet-based interventions for informal caregivers have the potential to mitigate the negative mental health outcomes associated with caregiving. Objective: The objective of this systematic review and meta-analysis was to examine the impact of internet-based interventions on caregiver mental health outcomes and the impact of different types of internet-based intervention programs. Methods: MEDLINE, EMBASE, CINAHL, PsycINFO, Cochrane, and AgeLine databases were searched for randomized controlled trials or controlled clinical trials published from January 1995 to April 2017 that compared internet-based intervention programs with no or minimal internet-based interventions for caregivers of adults with at least 1 chronic condition. The inclusion criteria were studies that included (1) adult informal caregivers (aged 18 years or older) of adults living in the community with a chronic condition; (2) an internet-based intervention program to deliver education, support, or monitoring to informal caregivers; and (3) outcomes of mental health. Title and abstract and full-text screening were completed in duplicate. Data were extracted by a single reviewer and verified by a second reviewer, and risk of bias assessments were completed accordingly. Where possible, data for mental health outcomes were meta-analyzed. Results: The search yielded 7923 unique citations of which 290 studies were screened at full-text. Of those, 13 studies met the inclusion criteria; 11 were randomized controlled trials, 1 study was a controlled clinical trial, and 1 study comprised both study designs. Beneficial effects of any internet-based intervention program resulted in a mean decrease of 0.48 points (95% CI –0.75 to –0.22) for stress and distress and a mean decrease of 0.40 points (95% CI –0.58 to –0.22) for anxiety among caregivers. For studies that examined internet-based information and education plus professional psychosocial support, the meta-analysis results showed small to medium beneficial effect sizes of the intervention for the mental health outcomes of depression (–0.34; 95% CI –0.63 to –0.05) and anxiety (–0.36; 95% CI –0.66 to –0.07). Some suggestion of a beneficial effect on overall health for the use of information and education plus combined peer and professional support was also shown (1.25; 95% CI 0.24 to 2.25). Overall, many studies were of poor quality and were rated at high risk of bias. Conclusions: The review found evidence for the benefit of internet-based intervention programs on mental health for caregivers of adults living with a chronic condition, particularly for the outcomes of caregiver depression, stress and distress, and anxiety. The types of interventions that predominated as efficacious included information and education with or without professional psychological support, and, to a lesser extent, with combined peer and psychological support. Further high-quality research is needed to inform the effectiveness of interactive, dynamic, and multicomponent internet-based interventions. Trial Registration: PROSPERO CRD42017075436; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=75436 (Archived by WebCite at http://www.webcitation.org/709M3tDvn)

Access source material through DOI

‘There is still so much inside’: The impact of personalised reminiscence, facilitated by a tablet device, on people living with mild to moderate dementia and their family carers

The aim of this qualitative study was to explore the impact of a home-based, personalised reminiscence programme facilitated through an iPad app on people living with dementia and their family carers. Semi-structured interviews were used to collect data from 15 people living with dementia and 17 family carers from a region of the United Kingdom. The interviews were recorded, transcribed and analysed using thematic analysis. Six key themes emerged related to usability (‘It’s part of my life now’); revisiting the past (‘Memories that are important to me’); home use (‘It was homely’); impact on the person living with dementia (‘It helped me find myself again’); gains and abilities (‘There is still so much inside’) and impact on relationships (‘It’s become very close’). These themes highlighted the impact of the reminiscence experience at an individual and relationship level for people living with dementia and their carers. The reminiscence experience also appeared to facilitate the development of new insights among participants that emphasised abilities and gains rather than disabilities and losses. The significance of personal memories was a core theme although this was not without its challenges, particularly if memories were distressing. The reminiscence experience was differentiated by individual roles. Carers tended to become more relationship-focused, whereas people living with dementia highlighted the significance of learning new skills. The study concluded that individual specific reminiscence supported by an iPad app can have a positive impact on people living with dementia and their carers at an individual and relationship level.

Access source material through DOI

Managing medications for individuals living with a dementia: Evaluating a web‐based information resource for informal carers

Aims The purpose of the study was to evaluate the usefulness of the “Managing Medicines for People with Dementia” (www.dementiameds.com) website for informal carers. Background The management of medications for individuals living with a dementia by informal carers is a neglected area of care. We know that informal carers find it difficult accessing reliable and comprehensive information about medications. We also know that the Internet is a contemporary and growing medium through which consumers access health information. This study was unique in that it brought these two elements together through an interdisciplinary study about the usefulness of a new website providing information on medication management. Methods Data collection consisted of focus groups with informal carers of individuals living with a dementia. Data were analysed through content analysis. Findings Four themes were generated from the data to explain the evaluation of the website by informal carers: (1) Suitability of the website (2) Presentation of the website (3) Unexpected benefits of the website content (4) Future enhancements for website. Participants overwhelmingly agreed the content of the website filled a gap in information needs about medication management for individuals living with a dementia. Implications for practice This qualitative evaluation demonstrated the value of the website as a resource for informal carers of individuals living with a dementia. The resource could also be used by community nurses and other healthcare practitioners to help informal carers better manage the medication regimes of individuals living with a dementia. The resource has the potential to reduce complications associated with mismanagement of medications and contribute to new policies for implementing safe medication practices.

Access source material through DOI

Benefits and burdens: family caregivers' experiences of assistive technology (AT) in everyday life with persons with young-onset dementia (YOD)

Background: People with dementia and their family caregivers may benefit from assistive technology (AT), but knowledge is scarce about family carers’ (FC) experiences and involvement in the use of AT in everyday life. Aim: To examine the FC roles and experiences with AT as means of supporting people with young onset-dementia (YOD). Method: Qualitative interview study with follow-up design. Repeated semi-structured interviews were conducted with 13 FC of people with YOD, participating in an ongoing intervention study investigating the families’ use and experiences of AT in everyday life. Results: Six main themes emerged: (1) timely information about AT; (2) waiting times; (3) AT incorporated into everyday living; (4) AT experienced as a relief and burden; (5) appraisal of AT qualities and (6) the committed caregiver. Conclusions: The study found benefits for the FC, especially with simply designed AT, but also several barriers for successful use. A committed caregiver is vital throughout the process. Users will need professional advice and support, and occupational therapists may have a significant role in the process. Interventions implementing AT must be based on analysis of the needs of the person with YOD and the carers: their capabilities, preferences, embodied habits, and coping strategies.

Implications for Rehabilitation

  • Committed family carers (FC) play an important, often decisive, role in providing support for the person with young-onset dementia (YOD, onset <65 years) to use and benefit from the AT.
  • The simpler the AT, the better. The AT should be introduced at “the right time”, before the cognitive and adaptive reduction is too great. The “window” for implementation may be short.
  • AT has potential to ease caregiving and give relief for FC. However, many barriers, difficulties and problems must be attended to.
  • A system for individualized support over time is necessary for implementing AT for this group.
Access source material through DOI

Feasibility, useability and acceptability of technology-based interventions for informal cancer carers: a systematic review

Background: Carers looking after someone with cancer often experience negative impacts on their own health. M-health interventions have been designed to provide information and support to patients and their carers. However, the effectiveness of technology-based interventions for carers is less well understood. The objectives were to assess the feasibility, useability and acceptability of technology-based interventions among carers of people living with cancer. Methods: A systematic search of the CINAHL, MEDLINE and PSYCINFO databases was performed using terms related to web-based interventions and smartphone applications, carers and cancer. Studies were included if a randomised controlled trial or pilot study was conducted, focused on adult carers looking after another adult with cancer and were published between January 2007-June 2017. Articles were excluded if they reported qualitative results only or were evaluating existing websites and applications. Feasibility was measured by attrition, recruitment rates and frequency of intervention use; useability was measured by the ease of intervention use and the role of features to minimise errors in use. Acceptability was measured by carers’ perception of the appropriateness of the content and their ability to incorporate the intervention into their daily routines. Results: Of the 729 articles, six articles met the inclusion criteria. Attrition ranged from 14% - 77%, recruitment rates from 20% - 66% and intervention useability varied across studies. Half of the studies implemented measures to improve useability. Overall, carers rated the content of the interventions as appropriate and reported improved knowledge and communication. Acceptability was further demonstrated as carers preferred the flexibility available with web-based interventions. Conclusions: Technology-based interventions are suitable for use among carers of people with cancer. Further research is required to fully assess the impact of technology as an information and support mechanism for carers.

Access source material through DOI

Mobile apps for caregivers of older adults: Quantitative content analysis

Background: Informal caregivers of older adults provide critical support for their loved ones but are subject to negative health outcomes because of burden and stress. Interventions to provide information and resources as well as social and emotional support reduce burden. Mobile apps featuring access to information, assistance with scheduling, and other features can automate support functions inexpensively and conveniently and reach a greater proportion of caregivers than otherwise possible. Objective: The aim of this study was to identify mobile apps geared towards caregivers of older adults, catalog features, and suggest best practices for adoption based on empirical findings of beneficial interventions in the caregiving literature. Methods: Search for apps focused on ones catered for caregivers of older adults in Google Play and iTunes, compiling their features, and identifying features reflecting categories of support identified in successful intervention studies to negative caregiver outcomes. Intervention research indicates that provision of information and resources, assistance in practical problem solving, coordinating care among multiple caregivers, and emotional support reduce caregiver burden. Results: Despite approximately over 200,000 mobile health–related apps, the availability of mobile apps for caregivers is relatively sparse (n=44 apps) as of October 2017. Apps generally addressed specific categories of support, including information and resources, family communication, and caregiver-recipient interactions. Few apps were comprehensive. Only 8 out of 44 (18%) had features that addressed three or more categories. Few apps provided specific stress reduction exercises for caregivers, which is important for reducing burden. Conclusions: Mobile apps have the potential to provide resources, just­-in­-time information for problem-solving, and stress reduction strategies for caregivers. Many apps offer functions that have been shown to reduce burden and improve health outcomes in caregivers, but few provide emotional support. Using an evidence­-based practice approach, mobile apps for caregivers can provide multiple beneficial support functions. Apps can serve a much larger proportion of this highly underserved population in their mobile form than more traditional means, improving their health and quality of life.

Access source material through DOI

Exploring factors that impact the decision to use assistive telecare: perspectives of family care-givers of older people in the United Kingdom

In the United Kingdom (UK), an ageing population met with the reduction of social care funding has led to reduced support for older people marked with an increased demand on family care-givers. Assistive telecare (AT) devices are viewed as an innovative and effective way to support older people. However, there is limited research which has explored adoption of AT from the perspectives of family care-givers. In-depth, semi-structured interviews were conducted with 14 family care-givers of patients who used the Assistive Telehealth and Telecare service in Cambridgeshire, UK. Family care-givers were either the spouse (N = 8) or child of the patient (N = 6). The patients' age ranged from 75 to 98, and either received a telecare standalone device or connected service. Framework analysis was used to analyse the transcripts. This study revealed that family care-givers play a crucial role in supporting the patient's decision to adopt and engage with AT devices. Knowledge and awareness, perceived responsibility, usefulness and usability, alongside functionality of the equipment, were influential factors in the decision-making process. AT devices were viewed positively, considered easy to use, useful and functional, with reassurance of the patient's safety being a core reason for adoption. Efforts to increase adoption and engagement should adapt recruitment strategies and service pathways to support both the patient and their care-giver.

Access source material through DOI

Exploring the cancer caregiver's journey through web‐based Meaning‐Centered Psychotherapy

Objective Psychosocial interventions are historically underutilized by cancer caregivers, but support programs delivered flexibly over the Internet address multiple barriers to care. We adapted Meaning‐Centered Psychotherapy for cancer caregivers, an in‐person psychotherapeutic intervention intended to augment caregivers' sense of meaning and purpose and ameliorate burden, for delivery in a self‐administered web‐based program, the Care for the Cancer Caregiver (CCC) Workshop. The present study evaluated the feasibility, acceptability, and preliminary effects of this program. Methods Eighty‐four caregivers were randomized to the CCC Workshop or waitlist control arm. Quantitative assessments of meaning, burden, anxiety, depression, benefit finding, and spiritual well‐being were conducted preintervention (T1), within 2‐weeks postintervention (T2), and 2‐ to 3‐month follow‐up (T3). In‐depth semistructured interviews were conducted with a subset of participants. Results Forty‐two caregivers were randomized to the CCC Workshop. Attrition was moderate at T2 and T3, with caregiver burden and bereavement as key causes of drop‐out. At T2 and T3, some observed mean change scores and effect sizes were consistent with hypothesized trends (eg, meaning in caregiving, benefit finding, and depressive symptomatology), though no pre‐post significant differences emerged between groups. However, a longitudinal mixed‐effects model found significant differential increases in benefit finding in favor of the CCC arm. Conclusions The CCC Workshop was feasible and acceptable. Based on effect sizes reported here, a larger study will likely establish the efficacy of the CCC Workshop, which has the potential to address unmet needs of caregivers who underutilize in‐person supportive care services.

Access source material through DOI

Developing a carer identity and negotiating everyday life through social networking sites: an explorative study on identity constructions in an online Swedish carer community

An overarching reason why carers do not utilise support services is that many people who perform care-giving do not necessarily self-identify as a carer. Understanding the development of carer identities is therefore crucial for the utilisation of different carer-focused health services. This study arose from the European Union-funded INNOVAGE project and aimed to describe how older carers conceptualise and understand their identity as carers on a Swedish online social forum. Theoretically the study adopts a constructionist approach and the method of netnography was applied. The findings reveal that a change in self-perception occurs in the process through which a carer role is acquired. The presence or absence of recognition for the older carers’ capacity, knowledge and life situation is seen as filtered through the needs of the care recipient, making the carer identity into an invisible self. This is not least the case when the identity is constructed in alliance with conceptual and moral obligations found within a marital discourse. Nevertheless, the opportunity for online communication may help to create a virtual space of social recognition through which different experiences attached to caring can be discussed. The significance of online communication is here understood as the possibility it presents for carers to be recognised by other carers. It is a process through which an invisible self can become visible.

Access source material through DOI

Achieving positive outcomes in complex cases: The Admiral Nurse Dementia Helpline (Innovative Practice)

Carer distress is an all too common factor in caring for someone with dementia, whether living with the person with dementia, or trying to maintain their independence when they are living alone. Providing support for families on many day-to-day issues with immediacy as and when they arise can be very difficult to achieve for services on the ground as carer need can be difficult to anticipate as well as the changing status of the person with dementia. This paper discusses the innovative role of managing complexity on a dementia telephone helpline manned by Admiral Nurses, specialist dementia nurses, in expertly supporting a family over a weekend where there were health concerns of a family member with dementia and a high level of carer distress.

Access source material through DOI

The experiences of working carers of older people regarding access to a web-based family care support network offered by a municipality

Policy makers in Sweden and other European Member States pay increasing attention as to how best support working carers carers juggling providing unpaid family care for older family members while performing paid work. Exploring perceived benefits and challenges with web-based information and communication technologies as a means of supporting working carers' in their caregiving role, this paper draws on findings from a qualitative study. The study aimed to describe working carers' experiences of having access to the web-based family care support network 'A good place' (AGP) provided by the municipality to support those caring for an older family member. Content analysis of interviews with nine working carers revealed three themes: A support hub, connections to peers, personnel and knowledge Experiencing ICT support as relevant in changing life circumstances and Upholding one's personal firewall. Findings indicate that the web-based family care support network AGP is an accessible, complementary means of support. Utilising support while balancing caregiving, work obligations and responsibilities was made easier with access to AGP enabling working carers to access information, psychosocial support and learning opportunities. In particular, it provided channels for carers to share experiences with others, to be informed, and to gain insights into medical and care issues. This reinforced working carers' sense of competence, helping them meet caregiving demands and see positive aspects in their situation. Carers' low levels of digital skills and anxieties about using computer-based support were barriers to utilising web-based support and could lead to deprioritising of this support. However, to help carers overcome these barriers and to better match web-based support to working carers' preferences and situations, web-based support must be introduced in a timely manner and must more accurately meet each working carer's unique caregiving needs.

Access source material through DOI

Changing Moods: How Manual Tracking by Family Caregivers Improves Caring and Family Communication

Previous research on healthcare technologies has shown how health tracking promotes desired behavior changes and effective health management. However, little is known about how the family caregivers' use of tracking technologies impacts the patient-caregiver relationship in the home. In this paper, we explore how health-tracking technologies could be designed to support family caregivers cope better with a depressed family member. Based on an interview study, we designed a simple tracking tool called Family Mood and Care Tracker (FMCT) and deployed it for six weeks in the homes of 14 family caregivers who were caring for a depressed family member. FMCT is a tracking tool designed specifically for family caregivers to record their caregiving activities and patient's conditions. Our findings demonstrate how caregivers used it to better understand the illness and cope with depressed family members. We also show how our tool improves family communication, despite the initial concerns about patient-caregiver conflicts.

Access source material through DOI

Web-based health interventions for family caregivers of elderly individuals: A Scoping Review

Background: For the growing proportion of elders globally, aging-related illnesses are primary causes of morbidity causing reliance on family members for support in the community. Family caregivers experience poorer physical and mental health than their non-caregiving counterparts. Web-based interventions can provide accessible support to family caregivers to offset declines in their health and well-being. Existing reviews focused on web-based interventions for caregivers have been limited to single illness populations and have mostly focused on the efficacy of the interventions. We therefore have limited insight into how web-based interventions for family caregiver have been developed, implemented and evaluated across aging-related illness. Objectives: To describe: a) theoretical underpinnings of the literature; b) development, content and delivery of web-based interventions; c) caregiver usage of web-based interventions; d) caregiver experience with web-based interventions and e) impact of web-based interventions on caregivers’ health outcomes. Methods: We followed Arksey and O’Malley’s methodological framework for conducting scoping reviews which entails setting research questions, selecting relevant studies, charting the data and synthesizing the results in a report. Results: Fifty-three publications representing 32 unique web-based interventions were included. Over half of the interventions were targeted at dementia caregivers, with the rest targeting caregivers to the stroke, cancer, diabetes and general frailty populations. Studies used theory across the intervention trajectory. Interventions aimed to improve a range of health outcomes for caregivers through static and interactive delivery methods Caregivers were satisfied with the usability and accessibility of the websites but usage was generally low and declined over time. Depression and caregiver burden were the most common outcomes evaluated. The interventions ranged in their impact on health and social outcomes but reductions in perception of caregiver burden were consistently observed. Conclusions: Caregivers value interactive interventions that are tailored to their unique needs and the illness context. However, usage of the interventions was sporadic and declined over time, indicating that future interventions should address stage-specific needs across the caregiving trajectory. A systematic review has the potential to be conducted given the consistency in caregiver burden and depression as outcomes.

Access source material through DOI

Computer and telephone delivered interventions to support caregivers of people with dementia: a systematic review of research output and quality

Background: To assess the scope, volume and quality of research on the acceptability, utilisation and effectiveness of telephone- and computer-delivered interventions for caregivers of people living with dementia. Methods: Medline, EMBASE, CINAHL and Cochrane databases were searched (Jan 1990 – Dec 2016). Eligible papers were classified as data-based descriptive, measurement or intervention studies. Intervention studies were first categorised according to mode of delivery (e.g. telephone, computer); then assessed against the Effective Practice and Organisation of Care (EPOC) methodological criteria for research design. Impact on health-related outcomes; and the acceptability, feasibility and utilisation of interventions were also assessed. Results: The number of publications increased by 13% each year (p < 0.001). Half were descriptive studies (n = 92, 50%) describing caregiver views on acceptability, access or utilization of technology. The remainder (n = 89, 48%) reported on interventions designed to improve caregiver outcomes. Only 34 met EPOC design criteria. Interventions were delivered via computer (n = 10), multiple modalities (n = 9) or telephone (n = 15). Interventions that incorporated various elements of psycho-education, peer support, skills training and health assessments led to improvements in caregiver wellbeing. While largely acceptable, utilisation of computer-based interventions was variable, with use often decreasing over time. Conclusion: Interventions delivered via telephone and computer have the potential to augment existing dementia care. High-quality trials are required to make clear recommendations about the types of interventions that are most effective. Those that provide caregivers with: access to practical strategies to manage care of the person with dementia and their own wellbeing, advice and support from peers and/or clinicians; and that target the dyad should be explored.

Access source material through DOI

Addressing the Challenges of Aging: How Elders and Their Care Partners Seek Information

Purpose: Elders in retirement communities face many challenges concerning information and communication. We know little about whether or how online technologies help meet their medical and social needs. The objective of this study was to gain insights into how these elders and their families manage health information and communication. Design and Methods: Qualitative analysis of 10 focus groups with elders and family members. Participants were 30 elders at least 75 years of age residing in 5 senior living communities in and near Boston, MA, and 23 family members. Results: Elders and families turned first to their personal networks when they needed information or help. They stayed informed about elders’ health primarily by talking directly with providers. They used online resources infrequently, including portal access to medical records. They wanted online access to medication lists and visit notes, up-to-date information about local services and social activities, and a way to avoid the overwhelming nature of Internet searches. Implications: Elders in senior living communities and their families piece together information primarily from word of mouth communication. In the future, electronic social and collaborative technologies may make information gathering easier.

Access source material through DOI

Would mobile health be a solution to rehospitalization?

It has been well‐established that social environmental factors can increase the risk of rehospitalization for people receiving home healthcare services. For caregivers who might be challenged to keep up with sometimes unfamiliar health monitoring tasks or to know when to seek help, mobile health technology offers the potential to enhance the skills of informal caregivers and to improve the communication between home and clinical care. This paper described our recent work to determine the usability, functionality, and style of interaction that would be needed to provide an effective and well‐accepted tool. Caregivers would likely adopt new mobile health tools, as long as care is taken to eliminate potential barriers, for example, by providing adequate training, and to include design aspects that enhance one's motivation to use a tool, such as by supporting autonomy and engagement.

Access source material through DOI

The TECH@HOME study, a technological intervention to reduce caregiver burden for informal caregivers of people with dementia: study protocol for a randomized controlled trial

Background: It is estimated that global dementia rates will more than triple by 2050 and result in a staggering economic burden on families and societies. Dementia carries significant physical, psychological and social challenges for individuals and caregivers. Informal caregiving is common and increasing as more people with dementia are being cared for at home instead of in nursing homes. Caregiver burden is associated with lower perceived health, lower social coherence, and increased risk of morbidity and mortality. The aim of this trial is to evaluate the effects of information and communication technology (ICT) on caregiver burden among informal caregivers of people with dementia by reducing the need for supervision.

Methods/design: This randomized controlled trial aims to recruit 320 dyads composed of people with dementia living in community settings and their primary informal caregivers. In the intervention group, people with dementia will have a home monitoring kit installed in their home while dyads in the control group will receive usual care. The ICT kit includes home-leaving sensors, smoke and water leak sensors, bed sensors, and automatic lights that monitor the individual’s behavior. Alerts (text message and/or phone call) will be sent to the caregiver if anything unusual occurs. All study dyads will receive three home visits by project administrators who have received project-specific training in order to harmonize data collection. Home visits will take place at enrollment and 3 and 12 months following installation of the ICT kit. At every home visit, a standardized questionnaire will be administered to all dyads to assess their health, quality of life and resource utilization. The primary outcome of this trial is the amount of informal care support provided by primary informal caregivers to people with dementia.

Discussion: This is the first randomized controlled trial exploring the implementation of ICT for people with dementia in a large sample in Sweden and one of the first at the international level. Results hold the potential to inform regional and national policy-makers in Sweden and beyond about the cost-effectiveness of ICT and its impact on caregiver burden.

Trial Registration: ClinicalTrials.gov, NCT02733939. Registered on 10 March 2016.

Access source material through DOI

Components and Outcomes of Internet-Based Interventions for Caregivers of Older Adults: Systematic Review

Background: When trying to access interventions to improve their well-being and quality of life, family caregivers face many challenges. Internet-based interventions provide new and accessible opportunities to remotely support them and can contribute to reducing their burden. However, little is known about the link existing between the components, the use of behavior change techniques, and the outcomes of these Internet-based interventions.

Objective: This study aimed to provide an update on the best available evidence about the efficacy of Internet-based interventions for caregivers of older adults. Specifically, the components and the use of behavior change techniques and how they impact on the efficacy of the intervention were sought.

Methods: A systematic review searched primary source studies published between 2000 and 2015. Included studies were scored with a high level of evidence by independent raters using the GRADE criteria and reported caregiver-specific outcomes about interventions delivered through the Internet for caregivers of people aged 50 years and older. A narrative synthesis identified intervention components (eg, content, multimedia use, interactive online activities, and provision of support), behavior change techniques, and caregiver outcomes (eg, effects on stressors, mediators, and psychological health). The risk of bias within the included studies was assessed.

Results: A total of 2338 articles were screened and 12 studies describing 10 Internet-based interventions were identified. Seven of these interventions led to statistically significant improvements in caregiver outcomes (eg, reducing depression or anxiety, n=4). These efficacious interventions used interactive components, such as online exercises and homework (n=4) or questionnaires on health status (n=2) and five of them incorporated remote human support, either by professionals or peers. The most frequently used behavior change techniques included in efficacious interventions were provision of social support (n=6) and combinations of instructions to guide behavior change and barrier identification (n=5). The design and aim of the included studies did not permit determining exactly which component and/or behavior change technique was more efficacious in producing positive outcomes in caregivers. The risk for selection bias was low for all the studies, and low to high for performance, detection, and attrition biases.

Conclusions: In sum, Internet-based interventions that incorporate professional and social support, and provide instructions to change behavior and problem solve in an interactive manner appear to lead to positive outcomes in caregivers. Studies isolating the specific effect of components are needed to improve our understanding of the underlying mechanism of action.

Access source material through DOI

Effectiveness of an online social support intervention for caregivers of people with dementia: the study protocol of a randomised controlled trial

Caregivers of people with dementia (PwD) face burden, feelings of loneliness, and social isolation. Previous studies have shown promising effects of online e-health interventions. Using social media may facilitate support for dementia caregiver networks. In an iterative step-wise approach, a social support tool entitled "Inlife" was developed. This paper describes the design of a study evaluating the effects of Inlife and its process characteristics. Methods: A mixed-method, randomised controlled trial with 122 caregivers of PwD will be conducted. Participants will be assigned to either the Inlife social support intervention or a waiting-list control group. After 16 weeks, the control group will obtain access to the Inlife environment. Data will be collected at baseline (T0) and at 8-week (T1), 16-week (T2) and 42-week follow up (T3). The 16-week follow-up assessment (T2) is the primary endpoint to evaluate the results on the primary and secondary outcomes, measured by self-reported questionnaires. The primary outcomes include feelings of caregiver competence and perceived social support. The secondary outcomes include received support, feelings of loneliness, psychological complaints (e.g., anxiety, stress), and quality of life. A process evaluation, including semi-structured interviews, will be conducted to examine the internal and external validity of the intervention. Discussion: Using a mixed-method design, our study will provide valuable insights into the usability, effectiveness, and factors related to implementation of the Inlife intervention. Our study results will indicate whether Inlife could be a valuable social support resource in future routine dementia care. Trial registration: Dutch trial register, NTR6131. Registered on 20 October 2016.

Access source material through DOI

What is Important in E-health Interventions for Stroke Rehabilitation? A Survey Study among Patients, Informal Caregivers and Health Professionals

Incorporating user requirements in the design of e-rehabilitation interventions facilitates their implementation. However, insight into requirements for e-rehabilitation after stroke is lacking. This study investigated which user requirements for stroke e-rehabilitation are important to stroke patients, informal caregivers, and health professionals. The methodology consisted of a survey study amongst stroke patients, informal caregivers, and health professionals (physicians, physical therapists and occupational therapists). The survey consisted of statements about requirements regarding accessibility, usability and content of a comprehensive stroke e-health intervention (4-point Likert scale, 1=unimportant/4=important). The mean with standard deviation was the metric used to determine the importance of requirements. Patients (N=125), informal caregivers (N=43), and health professionals (N=105) completed the survey. The mean score of user requirements regarding accessibility, usability and content for stroke e-rehabilitation was 3.1 for patients, 3.4 for informal caregivers and 3.4 for health professionals. Data showed that a large number of user requirements are important and should be incorporated into the design of stroke e-rehabilitation to facilitate their implementation.

Access source material through DOI

Informal Caregivers' Experiences and Perceptions of a Web-Based Peer Support Network: Mixed-Methods Study

Background: Web-based peer support interventions have shown promise in reducing social isolation and social support deficits among informal caregivers, but little research has examined how caregivers use and perceive these interventions.; Objective: In this study, we examined utilization and perceptions of a Web-based social support intervention for informal caregivers of wounded, ill, and injured United States military service members and veterans.; Methods: This was a mixed-methods study that used quantitative survey data and qualitative data from focus groups and interviews with informal caregivers enrolled in a Web-based peer support intervention to explore their use and perceptions of the intervention. The intervention was delivered via a website that featured interest groups organized around specific topics, webinars, webchats, and messaging functionality and was moderated by professionally trained peers. This study occurred in the context of a quasi-experimental outcome evaluation of the intervention, where intervention participants were compared with a group of military caregivers who were not enrolled in the intervention.; Results: Survey findings indicated that caregivers used the website infrequently, with 60.7% (128/211) visiting the website once a month or less, and passively, with a minority (32/144, 22.2%) of users (ie, those who had visited the website at least once during the past 3 months, N=144) posting comments or links to the network. Nonetheless, most users (121/144, 84.0%) endorsed moderate or greater satisfaction with the website on the survey, and focus group and interview participants reported benefiting sufficiently from passive use of the website (eg, reading posts). Quantitative and qualitative findings suggested that users viewed the website primarily as a source of informational support. Among 63.2% (91/144) of users who completed the survey, the most commonly reported network-related activity was obtaining information from the network's resource library, and focus group and interview participants viewed the network primarily as an informational resource. Focus group and interview participants expressed an unmet need for emotional support and the desire for a more personal touch in the forms of more active engagement with other caregivers in the network and the creation of local, in-person support groups for caregivers.; Conclusions: These findings suggest that Web-based peer support interventions may lend themselves better to the provision of informational (vs emotional) support and may need to be supplemented by in-person peer support groups to better meet caregivers' needs for emotional support.

Access source material through DOI

Novel technology as platform for interventions for caregivers and individuals with severe mental health illnesses: A systematic review

Background: Severe mental illnesses (SMIs) have been found to be associated with both increases in morbidity-mortality, need for treatment care in patients themselves, and burden for relatives as caregivers. A growing number of web-based and mobile software applications have appeared that aim to address various barriers with respect to access to care. Our objective was to review and summarize recent advancements in such interventions for caregivers of individuals with a SMI.; Methods: We conducted a systematic search for papers evaluating interactive mobile or web-based software (using no or only minimal support from a professional) specifically aimed at supporting informal caregivers. We also searched for those supporting patients with SMI so as to not to miss any which might include relatives.; Results: Out of a total of 1673 initial hits, we identified 11 articles reporting on 9 different mobile or web-based software programs. The main result is that none of those studies focused on caregivers, and the ones we identified using mobile or web-based applications were just for patients and not their relatives.; Limitations: Differentiating between online and offline available software might not always have been totally reliable, and we might have therefore missed some studies.; Conclusions: In summary, the studies provided evidence that remotely accessible interventions for patients with SMI are feasible and acceptable to patients. No such empirically evaluated program was available for informal caregivers such as relatives. Keeping in mind the influential role of those informal caregivers in the process of treatment and self-management, this is highly relevant for public health. Supporting informal caregivers can improve well-being of both caregivers and patients.

Access source material through DOI

Testing Tele-Savvy: Protocol for a randomized controlled trial

Many informal caregivers of persons with dementia suffer adverse health consequences. Although established psychoeducation programs are known to benefit caregivers, attending in-person programs is challenging for them. To address this challenge, the Savvy Caregiver Program, an evidence-based psychoeducation program with demonstrated effectiveness for caregiving and disease-related outcomes, was transformed into an on-line program, Tele-Savvy. This article describes the rationale for and design of a prospective longitudinal randomized controlled trial (targeted N = 215), currently underway. The trial aims to establish Tele-Savvy's efficacy in (i) reducing the negative effects of caregiving on caregivers; (ii) promoting care recipients' quality of life; (iii) improving caregiver mastery; and to explore (iv) Tele-Savvy's efficacy among caregivers of different races/ethnicities. The mediating role of mastery will be assessed. Participants are randomized to the active condition (immediate Tele-Savvy participation), attention control, or usual care. Participants in the two latter conditions will complete Tele-Savvy 6 months post-baseline. Multilevel mixed effects models will be used to examine changes in outcomes and to model group by time (months since baseline) interactions. The exploratory aim will be addressed using analysis of covariance and qualitative analysis. This trial's results may be used by healthcare and community organizations to implement Tele-Savvy in dementia care, increasing caregivers' access to this evidence-based intervention.

Access source material through DOI

Caring for the person with cancer: Information and support needs and the role of technology

Objective: Informal carers experience a variety of information and support needs when providing care to someone with cancer. It is unclear when carers seek information and what resources they access to support themselves throughout the cancer trajectory.; Methods: A sample of 45 carers and 15 oncology nurses were recruited to participate in either focus groups or phone interviews.; Results: Carers in the study were more likely to be women (60%), caring for a spouse or partner (64.4%), living with the patient (86.7%), and hold a university degree (46.7%). The majority of oncology nurses were females (66.6%). Findings showed that carers had limited access to adequate information as needs arose. Supports used to address information needs included information booklets, the Internet, and communication with healthcare professionals or with other carers. Barriers in communication between nurses and carers impacted on the adequacy of information received. Participants reported that technology, such as smartphone applications, might be appropriate for improving information and support needs.; Conclusions: Caring for someone with cancer is multifaceted. Carers need access to timely information to help them effectively manage patients' needs. Future studies should assess the role of contemporary approaches, such as digital technology, as a solution to the delivery of information and support for carers of people with cancer.

Access source material through DOI

Distance education methods are useful for delivering education to palliative caregivers: A single-arm trial of an education package (PalliativE Caregivers Education Package)

Background: Face-to-face/group education for palliative caregivers is successful, but relies on caregivers travelling, being absent from the patient, and rigid timings. This presents inequities for those in rural locations. Aim: To design and test an innovative distance-learning educational package (PrECEPt: PalliativE Caregivers Education Package). Design: Single-arm mixed-method feasibility proof-of-concept trial (ACTRN12616000601437). The primary outcome was carer self-efficacy, with secondary outcomes focused on caregiver preparedness and carer tasks/needs. Analysis focused on three outcome measures (taken at baseline and 6 weeks) and feasibility/acceptability qualitative data. Setting and participants: A single specialist palliative care service. Eligible informal caregivers were those of patients registered with the outpatient or community service, where the patient had a prognosis of ≥12 weeks, supporting someone with nutrition/hydration and/or pain management needs, proficient in English and no major mental health diagnosis. Results: Two modules were developed and tested (nutrition/hydration and pain management) with 18 caregivers. The materials did not have a statistically significant impact on carer self-efficacy. However, statistically significant improvements were observed on the two subsidiary measures of (1) caregiving tasks, consequences and needs (p = 0.03, confidence interval: 0.72, 9.4) and (2) caregiver preparedness (p = 0.001, confidence interval: -1.22, -0.46). The study determined that distance learning is acceptable and feasible for both caregivers and healthcare professionals. Conclusion: Distance education improves caregiver preparedness and is a feasible and acceptable approach. A two-arm trial would determine whether the materials benefitted caregivers and patients compared to a control group not receiving the materials. Additional modules could be fruitfully developed and offered. 

Access source material through DOI

Internet Use and Technology-Related Attitudes of Veterans and Informal Caregivers of Veterans

Background: Healthcare systems are interested in technology-enhanced interventions to improve patient access and outcomes. However, there is uncertainty about feasibility and acceptability for groups who may benefit but are at risk for disparities in technology use. Thus, we sought to describe characteristics of Internet use and technology-related attitudes for two such groups: (1) Veterans with multi-morbidity and high acute care utilization and (2) informal caregivers of Veterans with substantial care needs at home.; Materials and Methods: We used survey data from two ongoing trials, for 423 Veteran and 169 caregiver participants, respectively. Questions examined Internet use in the past year, willingness to communicate via videoconferencing, and comfort with new technology devices.; Results: Most participants used Internet in the past year (81% of Veterans, 82% of caregivers); the majority of users (83% of Veterans, 92% of caregivers) accessed Internet at least a few times a week, and used a private laptop or computer (81% of Veterans, 89% of caregivers). Most were willing to use videoconferencing via private devices (77-83%). A majority of participants were comfortable attempting to use new devices with in-person assistance (80% of Veterans, 85% of caregivers), whereas lower proportions were comfortable "on your own" (58-59% for Veterans and caregivers). Internet use was associated with comfort with new technology devices (odds ratio 2.76, 95% confidence interval 1.70-4.53).; Conclusions: Findings suggest that technology-enhanced healthcare interventions are feasible and acceptable for Veterans with multi-morbidity and high healthcare utilization, and informal caregivers of Veterans. In-person assistance may be important for those with no recent Internet use.

Access source material through DOI

A systematic review on the implementation of eHealth interventions for informal caregivers of people with dementia

Objectives: The objectives were to (1) systematically review the literature on the implementation of eHealth interventions for informal caregivers of people with dementia, and (2) identify determinants of successful implementation.; Methods: Online databases were searched for articles about eHealth interventions for informal caregivers of people with dementia, providing information on their implementation. Articles were independently screened and inductively analyzed using qualitative analysis. The analysis was mapped onto the Consolidated Framework for Implementation Research (CFIR; Damschroder et al., 2009).; Findings: 46 articles containing 204 statements on implementation were included. The statements on implementation were grouped into four categories: Determinants associated with the eHealth application, informal caregiver, implementing organization, or wider context. Mapping of the determinants on the CFIR revealed that studies have focused mostly on characteristics of the intervention and informal caregiver. Limited attention has been paid to organizational determinants and the wider context.; Conclusions: Despite prolific effectiveness and efficacy research on eHealth interventions for caregivers of people with dementia, there is a critical dearth of implementation research. Furthermore, there is a mismatch between eHealth intervention research and implementation frameworks, especially concerning organizational factors and wider context. This review underscores the importance of future implementation research in bridging the gap between research and practice.

Access source material through DOI

An integrative review of information and communication technology based support interventions for carers of home dwelling older people

Background: A growing number of studies of informal carers of older people reveal positive results concerning support via Information and Communication Technologies (ICT). Systematic examination of factors that have a potential impact on carer outcomes are needed to inform future research.; Objective: To explore studies concerning ICT support of adult carers of older people and to identify study characteristics that have a potential impact on carer outcomes.; Methods: This integrative review includes 123 studies published since 2005. Fundamental questions for designing sensitive support interventions; 'who, what, and how' were applied to a synthesis of the results.; Results: Identified characteristics from the studies responding to the who question included variables of the carers, such as their relationship with the care recipient or their ethnicity. Characteristics related to the what question related to the types of interventions, and the how question concerned the different services or programs offered, the idiosyncratic needs of the carers, and the types of technologies used.; Conclusion: Results are discussed according to micro, meso and macro levels of analysis. This extensive review can inform future studies and highlight the evidence in the area for decision makers, practitioners and/or NGOs working with innovative forms of support for carers of older people.

Access source material through DOI

A multi-perspective evaluation of a service robot for seniors: the voice of different stakeholders

Purpose: The potential of service robots for seniors is given increasing attention as the ageing population in Western countries will continue to grow as well as the demand for home care. In order to capture the experience of living with a robot at home, a multi-perspective evaluation was conducted.; Methods: Older adults (n = 10) were invited to execute an actual interaction scenario with the Care-O-bot® robot in a home-like environment and were questioned about their experiences. Additionally, interviews were conducted with the elderly participants, informal carers (n = 7) and professional caregivers (n = 11).; Results: Seniors showed to be more keen to accept the robot than their caregivers and relatives. However, the robot in its current form was found to be too limited and participants wished the robot could perform more complex tasks. In order to be acceptable a future robot should execute these complex tasks based on the personal preferences of the user which would require the robot to be flexible and extremely smart, comparable to the care that is delivered by a human carer.; Conclusions: Developing the functional features to perform activities is not the only challenge in robot development that deserves the attention of robot developers. The development of social behaviour and skills should be addressed as well. This is possible adopting a person-centred design approach, which relies on validation activities with actual users in realistic environments, similar to those described in this paper. Implications for rehabilitation Attitude of older adults towards service robots Potential of service robotsfor older adults.

Access source material through DOI

Usage and Usability of a Web-based Program for Family Caregivers of Older People in Three European Countries: A Mixed-Methods Evaluation

InformCare is a European Web platform that supports informal caregivers of older people by providing access to online information and professional and peer support. The aim of this study was to assess the usage and usability of a psychosocial Web-based program carried out in three European countries (Italy, Sweden, and Germany). A mixed-methods sequential explanatory design was adopted, comprising baseline and postintervention assessments, as well as combined thematic content analysis of results and focus group findings. A convenience sample of 118 caregivers was enrolled, of whom 94 used the services offered by the program at least once. The subsamples in the three countries used the platform in different ways, with a predominance of passive strategies (eg, seeking information and reading other people's comments) for Italian caregivers, and more active usage by Swedish and German caregivers. The usability assessment showed that the platform was perceived well by Italian and German caregivers, whereas technical problems affected the Swedish sample's experiences. Focus group data highlighted user satisfaction with the online support and reliability of the environment. Recommendations for practitioners are to ensure digital training for caregivers who have lower confidence in use of the Internet, to involve different healthcare professionals in the provision of professional support, and to adequately manage online community building.

Access source material through DOI

Touchscreen interventions and the well-being of people with dementia and caregivers: a systematic review

Background: Dementia can have significant detrimental impacts on the well-being of those with the disease and their carers. A range of computer-based interventions, including touchscreen-based interventions have been researched for use with this population in the hope that they might improve psychological well-being. This article reviews touchscreen-based interventions designed to be used by people with dementia (PWD), with a specific focus in assessing their impact on well-being.; Method: The data bases, PsycInfo, ASSIA, Medline, CINAHL, and Cochrane Reviews were searched for touchscreen-based interventions designed to be used by PWD with reported psychological well-being outcomes. Methodological quality was assessed using Pluye and Hong's (2014) Mixed Methods Appraisal Tool (MMAT) checklist.; Results: Sixteen papers were eligible. They covered 14 methodologically diverse interventions. Interventions were reported to be beneficial in relation to mental health, social interaction, and sense of mastery. Touchscreen interventions also reportedly benefit informal carers in relation to their perceived burden and the quality of their relationships with the people they care for. Key aspects included the user interface, provision of support, learning style, tailored content, appropriate challenge, ergonomics, and users' dementia progression.; Conclusions: Whilst much of the existing research is relatively small-scale, the findings tentatively suggest that touchscreen-based interventions can improve the psychological well-being of PWD, and possibilities for more rigorous future research are suggested.

Access source material through DOI

Web-Based Interventions to Improve Mental Health, General Caregiving Outcomes, and General Health for Informal Caregivers of Adults With Chronic Conditions Living in the Community: Rapid Evidence Review

Background: Most adults with chronic conditions live at home and rely on informal caregivers to provide support. Caregiving can result in negative impacts such as poor mental and physical health. eHealth interventions may offer effective and accessible ways to provide education and support to informal caregivers. However, we know little about the impact of Web-based interventions for informal caregivers of community-dwelling adults with chronic conditions.; Objective: The purpose of this rapid evidence review was to assess the impact of Web-based interventions on mental health, general caregiving outcomes, and general health for informal caregivers of persons with chronic conditions living in the community.; Methods: A rapid evidence review of the current literature was employed to address the study purpose. EMBASE, MEDLINE, PsychInfo, CINAHL, Cochrane, and Ageline were searched covering all studies published from January 1995 to July 2016. Papers were included if they (1) included a Web-based modality to deliver an intervention; (2) included informal, unpaid adult caregivers of community-living adults with a chronic condition; (3) were either a randomized controlled trial (RCT) or controlled clinical trial (CCT); and (4) reported on any caregiver outcome as a result of use or exposure to the intervention.; Results: A total of 20 papers (17 studies) were included in this review. Study findings were mixed with both statistically significant and nonsignificant findings on various caregiver outcomes. Of the 17 included studies, 10 had at least one significant outcome. The most commonly assessed outcome was mental health, which included depressive symptoms, stress or distress, and anxiety. Twelve papers examined the impact of interventions on the outcome of depressive symptoms; 4 found a significant decrease in depressive symptoms. Eight studies examined the outcome of stress or distress; 4 of these found a significant reduction in stress or distress as a result of the intervention. Three studies examined the outcome of anxiety; 2 of these found significant reductions in anxiety. Other significant results of the interventions were seen in the outcomes of caregiver gain (ie, positive aspects of caregiving), knowledge, bonding, reduction of anger-hostility, and negative mood. Based on this review, it is not possible to determine which interventions were most effective since studies differed in their design, sample, and intervention. Study results suggest that Web-based interventions may result in reduced depressive symptoms, anxiety, and stress or distress among informal caregivers of adults with chronic conditions in the community.; Conclusions: This is the first review assessing the impact of Web-based technologies on mental health, general caregiving outcomes, and general health for caregivers of adults with chronic conditions living in the community. Further rigorous research is needed that includes adequately powered studies examining the critical components of the intervention and the dosage needed to have an effect.

Access source material through DOI

Older Adults and Management of Medical Devices in the Home: Five Requirements for Appropriate Use

Medical devices, or instruments or tools to manage disease, are increasingly used in the home, yet there have been limited evaluations of how older adults and caregivers safely use these devices. This study concerns a qualitative evaluation of (1) barriers and facilitators of appropriate use, and (2) outcomes of inappropriate use, among older adults at the transition from hospital to home with skilled home health care (SHHC). Guided by a human factors engineering work system model, the authors (1) conducted direct observations with contextual inquiry of the start-of-care or resumption-of-care SHHC provider visit, and (2) semi-structured interviews with 24 older adults and their informal caregivers, and 39 SHHC providers and administrators. Five requirements for the appropriate use of home medical devices were identified. A systems approach integrating the hospital with the SHHC agency is needed to make the use of home medical devices safer.

Access source material through DOI

An assessesment of telephone assistance systems for caregivers of patients with Alzheimer's disease

Introduction: Telephone assistance is a common practice in neurology, although there are only a few studies about this type of healthcare. We have evaluated a Telephone Assistance System (TAS) for caregivers of patients with Alzheimer's disease (AD) from 2 points of view: financially and according to the level of satisfaction of the caregiver.; Patients and Methods: 97 patients with a diagnosis of AD according to NINCDS-ADRDA criteria and their 97 informal caregivers were selected. We studied cost differences between on-site assistance and telephone assistance (TAS) for 12 months. We used a self-administered questionnaire to assess the level of satisfaction of caregivers at the end of the study period.; Results: TAS savings amounted to 80.05 ± 27.07 euros per user. 73.6% of the caregivers consider TAS a better or much better system than on-site assistance, while only 2.6% of the caregivers considered TAS a worse or much worse system than on-site assistance.; Conclusions: Telephone assistance systems are an efficient healthcare resource for monitoring patients with AD in neurology departments. Furthermore, the level of user satisfaction was high. We therefore consider that telephone assistance service should be offered by healthcare services.

Access source material through DOI

Individualized support for informal caregivers of people with dementia - effectiveness of the German adaptation of REACH II

Background: Individualized, outreach and structured multicomponent interventions are a promising intervention approach to relieve the burden of informal caregivers of people with dementia. In this study, we adapted and evaluated a multicomponent intervention (Resources for Enhancing Alzheimer's Caregiver Health II, REACH II), which was developed in the USA, to the German health-care system. Therefore the project is called the German adaptation of REACH II (in German: Deutsche Adaptation der REACH II, DE-REACH).; Methods: The effectiveness of DE-REACH was examined in a randomized, controlled trial on 92 informal caregivers of people with dementia. The intervention comprised 12 individual two-weekly sessions (9 at home with the informal caregiver and 3 via telephone) and combined five modules. The reduction of the burden of the informal caregivers was chosen as the primary outcome.; Results: The results showed a great stabilizing effect of the intervention on caregiver burden (effect size d = 0.91), that is, comparing pre- and post-measurements the burden decreased very slightly in the intervention group whereas it increased very strongly in the control group. After a three-month follow-up period this effect decreased from a great to a moderate effect. There were also improvements as a result of the intervention in somatization, health-related psychological quality of life and the reaction of the informal caregivers in response to challenging behaviors of the relative with dementia. Moreover, the frequency of challenging behaviors of the affected person itself was reduced in favor of the intervention.; Conclusion: The findings of this study provide further evidence for the impact of multicomponent support interventions for informal caregivers of people with dementia.; Clinical Trial Registration: NCT01690117 . Registered September 17, 2012.

Access source material through DOI