Telepractice—specifically, the use of high-speed internet and interactive videoconferencing technology to deliver real-time audio and video communications between the family and the practitioner—is gaining acceptance as an alternative means of providing family-centered early intervention to families of children who are deaf and hard of hearing. This study examined whether caregivers' reported perceptions of self-efficacy and involvement differed when early intervention was delivered in-person and through telepractice. The Scale of Parental Involvement and Self-Efficacy (SPISE) was used to evaluate perceptions of two groups of caregivers: one that received early intervention in-person (n = 100) and a group who received services through telepractice (n = 41). Results indicated that mode of delivery of services was not related to caregivers' perceptions of their self-efficacy or involvement. Further analysis revealed that although certain caregiver or child characteristics did influence some aspects of caregivers' beliefs about their self-efficacy or involvement, the effect of those variables was similar across both modes of delivery.
Teaching caregivers to support their young children's language development is recommended as an effective early language intervention, and caregiver-implemented interventions are recognized as evidence-based. However, as the natural change agents for training and coaching caregivers, early intervention (EI) service providers are in need of professional development to effectively coach caregivers to use interventions with their child. The purpose of this study was to examine the Coaching Caregivers Professional Development program (CoCare PD) in which researchers train and coach EI service providers via telepractice in caregiver coaching, a set of skills useful in nurturing partnerships with families to support caregivers' use of evidence-based practices with their young children with disabilities. A single-case research study across four EI service providers was conducted and findings support a functional relation between training and coaching EI service providers via telepractice and providers' use of coaching practices with families on their caseload.
Introduction: Considering the importance of empowering patients and their families by providing appropriate information and education, it seems smartphone apps provide a good opportunity for this group. The purpose of this review was to identify studies which used smartphone apps to help children and adolescents with cancer and their families.
Method: Arksey and O'Malley's framework was employed in this review. To examine the evidence on the design and use of smartphone apps for the target group, PubMed, Embase, Scopus and Web of Science databases were searched from 2007 to November 2018.
Results: Twenty-four articles met the inclusion criteria, with 33% being conducted in the USA and 21% in Canada. Moreover, in 20 studies (83%), app was specifically designed for children and adolescents, with only three studies (13%) for parents and one study (4%) for both. The main modules of smartphone apps in these studies included symptom assessment (90%), provision of information and education (74%), communication with caregivers (57%), social support (30%) and calendar and reminder (21%).
Conclusions: Due to the easy access to smartphones without a costly infrastructure compared to landline phones, the use of mobile health (m-Health) has become a suitable method of providing healthcare services, especially for cancer. Use of smartphone apps, increases patient and families' access to reliable and suitable education and information regarding the disease. Thus, healthcare policy-makers in developing or underdeveloped countries can exploit the health-related potentials of m-Health following the experience of developed countries.
Objective: Real-time audiovisual consultation (telemedicine) has been proven feasible and is a promising alternative to interfacility transfer. We sought to describe caregiver perceptions of the decision to transfer his or her child to a pediatric emergency department and the potential use of telemedicine as an alternative to transfer.
Methods: Semistructured interviews of caregivers of patients transferred to a pediatric emergency department. Purposive sampling was used to recruit caregivers of patients who were transferred from varying distances and different times of the day. Interviews were conducted in person or on the phone by a trained interviewer. Interviews were recorded, transcribed, and analyzed using modified grounded theory.
Results: Twenty-three caregivers were interviewed. Sixteen (70%) were mothers; 57% of patients were transported from hospitals outside of the city limits. Most caregivers reported transfer for a specific resource need, such as a pediatric subspecialist. Generally, caregivers felt that the decision to transfer was made unilaterally by the treating physician, although most reported feeling comfortable with the decision. Almost no one had heard about telemedicine; after hearing a brief description, most were receptive to the idea. Caregivers surmised that telemedicine could reduce the risks and cost associated with transfer. However, many felt telemedicine would not be applicable to their particular situation.
Conclusions: In this sample, caregivers were comfortable with the decision to transfer their child and identified potential benefits of telemedicine as either an adjunct to or replacement of transfer. As hospitals use advanced technology, providers should consider families' opinions about risks and out-of-pocket costs and tailoring explanations to address individual situations.
Importance: A substantial proportion of parents whose child is diagnosed with a life-threatening illness experience high levels of distress that can lead to long-term mental health difficulties. This can affect the child's recovery.
Objective: To evaluate the efficacy of an acceptance and commitment therapy-based group intervention, delivered using videoconferencing, in reducing posttraumatic stress symptoms (PTSS) in these parents.
Design, Setting, and Participants: This study was a randomized clinical trial of an intervention for parents with elevated acute stress symptoms. It was a single-site study conducted in a tertiary pediatric hospital in Australia. Parents of children aged 0 to 18 years admitted for a life-threatening illness or injury to the oncology, cardiology, or pediatric intensive care departments were eligible. Participants were screened for eligibility within the first month after diagnosis or admission and then were randomized to the intervention group or the waiting list control group 4 to 10 months after diagnosis or admission. Recruitment commenced January 2014, and final postintervention follow-up was completed in February 2018. Data analysis was performed from July to September 2018.
Interventions: Treatment was a psychological acceptance and commitment therapy-based group therapy program called Take a Breath, which consisted of a 6-session parent-mediated psychological intervention delivered via online videoconferences over the course of 8 weeks. Waiting list control participants received treatment as usual and were offered the intervention 3 months after randomization.
Main Outcomes and Measures: The primary outcome was PTSS, as measured by the Posttraumatic Stress Disorder Checklist-Version 5 (total score range, 0-80, with higher scores indicating greater symptom severity). The PTSS was measured both before and immediately after the intervention. Changes in psychological skills taught within the intervention were also evaluated, including acceptance, mindfulness, values-based living, and psychological flexibility.
Results: Of 1232 parents who were assessed for eligibility, 313 were randomized; 161 were allocated to the waiting list control group, and 152 were allocated to the intervention group. Of those allocated, 44 parents in the waiting list group and 37 in the intervention group completed the postintervention questionnaire and were analyzed (81 participants total; mean [SD] age, 37.17 [6.43] years). Sixty-five participants (80.2%) were women, 48 participants (59.3%) were married, and 40 participants (49.4%) lived in rural or regional areas, or in a different state. In addition, 24 parents (29.6%) were in the cardiology illness group, 32 parents (39.5%) were in the oncology group, and 25 parents (30.9%) were in the pediatric intensive care unit group. The intervention group demonstrated significantly greater improvements in PTSS compared with the waiting list group (Cohen d = 1.10; 95% CI, 0.61-1.59; P = .03). The mean Posttraumatic Stress Disorder Checklist-Version 5 scores decreased from 31.7 (95% CI, 27.0-36.4) to 26.2 (95% CI, 21.8-30.7) in the waiting list control group and from 23.3 (95% CI, 18.6-28.1) to 17.8 (95% CI, 13.8-21.8) in the intervention group.
Conclusions and Relevance: The findings of this study support the use of acceptance and commitment therapy to reduce PTSS in parents of very ill children, regardless of diagnosis. These findings also suggest that a brief, group format using a videoconferencing platform can be used effectively to access hard-to-reach populations, particularly fathers and caregivers living in nonmetropolitan areas.
In 2017, NewYork-Presbyterian Phyllis and David Komansky Children's Hospital/Weill Cornell Medical Center was the Partnership Award recipient, for its innovative "Simulation Discharge Program (SDP)," a new patient education initiative that helps family/caregivers of technologydependent children prepare for hospital discharge (see Figure 2).[...]of her own experience, Courtney understood how difficult a hospital stay can be for families, and she initially focused on providing support to families whose children were hospitalized.In addition to Courtney Nataraj and Dr. Rodriguez, the team included a pediatric emergency medicine physician who is Director of Weill Cornell Medicine NewYorkPresbyterian Simulation Center; a pediatrician who is Director of Quality, Patient Safety, and Family Engagement; and a pediatric pulmonologist who is Director of the Weill Cornell Pediatric Sleep and Breathing Disorder Center; and several representatives from the hospital's Pediatric Ear, Nose and Throat, Nursing, and Social Work Departments.[...]many staff who had worked with the family were concerned the parents would never be able to take their daughter home, and believed it was inevitable that she would go to a long-term care facility.
Background: Asthma is a common chronic pediatric disease that can negatively impact children and families. Self-management strategies are challenging to adopt but critical for achieving positive outcomes. Mobile health technology may facilitate self-management of pediatric asthma, especially as adolescents mature and assume responsibility for their disease.
Objective: This study aimed to explore the perceptions of youths with high-risk asthma and their caregivers on the use of a smartphone app, Smartphone Asthma Management System, in the prevention and treatment of asthma symptoms, possible use of the app to improve self-management of asthma outside traditional clinical settings, and the impact of asthma on everyday life to identify potential needs for future intervention development.
Methods: Key informant interviews were completed with parent-child dyads post participation in an asthma management feasibility intervention study to explore the perceptions of users on a smartphone app designed to monitor symptoms and medication use and offer synchronous and asynchronous provider encounters. A thematic qualitative analysis was conducted inductively through emergent findings and deductively based on the self-determination theory (SDT), identifying 4 major themes.
Results: A total of 19 parent-child dyads completed the postintervention interviews. The major themes identified included autonomy, competence, relatedness, and the impact of asthma on life. The participants also shared their perceptions of the benefits and challenges associated with using the app and in the self-management of asthma. Both children and parents conveyed a preference for using technology to facilitate medication and disease management, and children demonstrated a strong willingness and ability to actively engage in their care.
Conclusions: Our study included support for the app and demonstrated the feasibility of enhancing the self-management of asthma by youth in the community. Participant feedback led to intervention refinement and app improvements, and the use of the SDT allowed insight into motivational drivers of behavioral change. The use of mobile apps among high-risk children with asthma and their parents shows promise in improving self-management, medication adherence, and disease awareness and in reducing overall disease morbidity.
Background and Aim: Jordan implemented abrupt and extreme lockdown measures to prevent the spread of COVID-19. This study aims to evaluate the effect of these measures on paediatric patients with type 1 diabetes in terms of acute metabolic complications and shortages in insulin and glucose measuring supplies. It also evaluates the caregivers' perceptions of the use of telemedicine during the lockdown.<bold>Methods: </bold>This is a questionnaire-based cross-sectional study. It was completed using Google forms and patients/caregivers were asked to consent if they agreed to answer.
Results: 235 patients/families participated in the study. The mean age of the patients was 10.8 years ± 3.9 years (N = 229). Twenty-four children (10.2%) needed to visit the emergency department during the lockdown period which lasted for 10 weeks. Of these, eight (3.4%) were hospitalized due to acute metabolic complications. Families (58.3%) faced insulin shortages and 14% had to ration insulin, i.e., decrease the dose, during the lockdown. Glucose monitoring strips were rationed by 43.4% of families leading to more frequent low/high glucose readings in 75.5% of children of these families. Telemedicine using phones and social media applications was utilized for communication with healthcare professionals and continuing medical care. Most of the participants (85.5%) described it as a smooth and positive experience.
Conclusions: The extreme lockdown due to COVID-19 pandemic caused insulin and glucose measuring equipment shortages in children with diabetes in Jordan. However, the use of telemedicine for providing guidance and support was perceived positively by the families.
Social media increasingly reflects patient experience, especially for self-managed conditions. We examined family experience with type 1 diabetes (T1D) through qualitative analysis of blogs written by caregivers of children with T1D, survey derived from that analysis, and survey administration among T1D caregivers. Analysis of 140 blog posts and 663 associated comments identified 77 topics, which were categorized into self-management, emotional, challenges, and successes. By subcategory analysis, self-management challenges were strongly correlated between blog content and survey responses ( R = .838, P = .005), and emotional challenges were moderately correlated ( R = .415, P = .02). Emotional successes were not significantly correlated ( R = .161, P = .511), and self-management successes were too few to analyze. The range of topics and the correlations between blog expressions and survey responses highlight the potential of blog analysis to gain insight into the challenges facing families living with T1D.
Background: Internet-based health resources can support informal caregivers who are caring for children or adolescents with health care needs. However, few studies discriminate informal caregivers' needs from those of their care recipients or those of people caring for adults.
Objective: This study reviews the literature of health-related Internet use among informal caregivers of children and adolescents.
Methods: A total of 17 studies were selected from literature searches conducted in 6 electronic databases: PubMed, Cochrane, CINAHL, PsycINFO, ERIC, and EMBASE. All databases searches were limited to articles published in the years 2004 to 2014 in peer-reviewed publications. Search terms consisted of "health-related Internet use," "eHealth," "Internet use for health-related purpose(s)," "Web-based resource(s)," and "online resources," combined with informal caregiver (or "parents") of "child," "adolescent," "student," "youth," and "teen." The age range of the children receiving care was limited to younger than 22 years. Their informal caregivers were defined as persons (parents) who provided unpaid care or assistance to a child or an adolescent with health problems.
Results: Among 17 empirical studies, the majority of informal caregivers of children with medical issues were the parents. Quantitative studies (14/17, 77%) reported prevalence and predictors of health-related Internet use, while mixed-methods and qualitative studies (3/17, 24%) investigated informal caregiver perceptions of helpful health-related Internet use and barriers of use. The prevalence of health-related Internet use varied (11%-90%) dependent upon how health-related Internet use was operationalized and measured. Disease-specific information was used for decision making about treatment, while social support via virtual communities and email were used for informal caregiver emotional needs. A digital divide of Internet access was identified in lower educated minorities. Most studies had methodological challenges resulting from convenience sampling, cross-sectional surveys, lack of theoretical frameworks, or no clear definitions of health-related Internet use.
Conclusions: This study provides an important understanding of how family members use Internet-based information and support systems during child caregiving. Healthcare providers and policy makers should integrate family needs into their current practices and policies. Further rigorous research is required to design efficient and effective nursing interventions.
Background: Despite the introduction of new insulin analogs, insulin pumps, and continuous glucose monitoring (CGM), young children with type 1 diabetes mellitus (T1D) remain vulnerable to episodes of hypoglycemia because of their unpredictable eating and activity patterns and high degree of insulin sensitivity. Caregivers and young children living with T1D learn to fear hypoglycemia because it is uncomfortable, unpredictable, and dangerous. Up to 60% of caregivers of young children with T1D report moderate to severe levels of fear of hypoglycemia, and caregiver fear of hypoglycemia relates to lower quality of life for families and suboptimal child glycemic control. Yet, until recently, there have been no studies reporting on a targeted intervention to treat caregiver fear of hypoglycemia in families of young children.
Objective: The aim of this project is to conduct a randomized clinical trial of an innovative, video-based telehealth intervention to treat fear of hypoglycemia in caregivers of young children with T1D versus a relevant, age-appropriate attention control intervention.
Methods: We created the Reducing Emotional Distress for Childhood Hypoglycemia in Parents (REDCHiP) intervention by merging age-appropriate T1D education and behavioral parenting strategies with cognitive behavioral therapy strategies that are effective for reducing fear and promoting adaptive coping. REDCHiP uses 10 video-based telehealth sessions that are a combination of group and individual sessions. We will recruit up to 180 families of young children with T1D to participate in this clinical trial from two pediatric diabetes clinics located in the midwestern and southern United States. Once families have been enrolled, we will randomize caregivers based on child age (age 2-3 years or 4-5 years), child sex, and family CGM use to participate in the REDCHiP or attention control intervention. Families will complete 3 assessment visits that coincide with study entry, end of treatment, and 3-month posttreatment. At each assessment visit, we will collect questionnaire data from caregivers, accelerometry data from caregivers and children, CGM data from children, and a blood sample to measure glycated hemoglobin levels from children.
Results: Recruitment began in July 2019, and enrollment is ongoing. The first wave of intervention delivery began in December 2019. We anticipate completing enrollment in 2023. Final reporting of results will occur within 12 months of the primary completion date.
Conclusions: If the REDCHiP intervention is efficacious, next steps will be to examine multiple implementation strategies to determine how best to disseminate the intervention to pediatric diabetes clinics around the world.
Background: Fetal alcohol spectrum disorders (FASD) affect approximately 2% to 5% of the US population. However, most families are unable to access FASD-informed interventions. Barriers to care include the lack of a knowledgeable and skilled workforce and family-level barriers such as limited financial resources, inability to access childcare, and stigma. As a result, families often try peer-to-peer and self-help support strategies. However, they often take these strategies from disparate sources, which have quite variable intervention quality and empirical support.
Objective: This study aimed to initiate systematic development and evaluation of a mobile health intervention (app) for caregivers raising children with FASD. Focus groups were conducted to elicit participant perspectives on app design and functionalities to inform further app development.
Methods: The app, called FMF Connect, was derived from the scientifically validated Families Moving Forward (FMF) Program, a clinician-delivered behavioral consultation intervention. FMF Connect was intended for caregiver self-delivery and included five main components: (1) Learning Modules, (2) Family Forum, (3) Library, (4) Notebook, and (5) Dashboard. Focus group methods were used to solicit perspectives from diverse families during the early stages of app development. Questions were asked about interface design, relevance of components and content, and perceived barriers and facilitators of use. A total of 25 caregivers participated in 7 focus groups across 5 US cities. Data were analyzed thematically.
Results: Focus group participants were generally enthusiastic about the app interface design and components. Four global positive impression themes emerged, including (1) ease of access, (2) how the app guides and organizes information, (3) connection to other users and information, and (4) ability to share some content with others. Themes arose not only in discussions relating to positive app features but also when participants were asked about motivators for app use. Participants related how these positive global themes could address some system-level barriers, such as limited access to services, feeling isolated, and increased advocacy needs related to the societal lack of FASD knowledge. Participants identified many positive features about individual app components and functionalities. They also communicated potential barriers to use and raised important concerns and considerations relating to several app components. These included recognizability of the app based on the logo, and the balance of following the planned intervention sequence versus obtaining immediate answers. Also mentioned were privacy and dynamics within the Family Forum.
Conclusions: FMF Connect is a promising novel intervention with potential to reach many families in need and reduce significant barriers to care, resulting in a broader public health impact. Study findings will guide further app development both in terms of content and technological advances to optimize intervention effects. FMF Connect app development provides useful directions for other apps aimed at changing parenting practices.
A VAD is a mechanical pump used to support the functioning of a failing heart. As a pediatric therapy, a VAD is used as a temporary solution for poor heart function, a bridge to transplantation or recovery, or a destination therapy. The goal of this qualitative study was to explore the perspectives of family and professional caregivers of children who are supported by VADs in outpatient settings. Semi-structured interviews were conducted with 22 caregivers of school-aged children discharged home on VAD support. Interviews were transcribed, and data were analyzed using qualitative content analysis. Caregivers identified issues facing children on VAD support in the contexts of home, school, and other childhood places including being physically connected to a device; experiencing changes; living a medical life; negotiating restrictions; cost of care; family, kinship, and community; and, present and future living. While a child with a VAD may have much in common with other medically complex children, the technological complications and risks of living with a VAD are uniquely identified by caregivers as an issue, especially when considering the way that children with a VAD are connected to their device-implanted yet exterior, mobile yet restricted, and autonomous yet dependent.
Background: The introduction of home therapy for hemophilia has empowered patients and their families to manage the disease more independently. However, self-management of hemophilia is demanding and complex. The uses of innovative interventions delivered by telehealth routes such as social media and Web-based and mobile apps, may help monitor bleeding events and promote the appropriate use of clotting factors among patients with hemophilia.; Objective: This scoping review aims to summarize the literature evaluating the effectiveness of telehealth interventions for improving health outcomes in patients with hemophilia and provides direction for future research.
Methods: A search was conducted in Ovid MEDLINE, EMBASE, and PubMed databases for studies that (1) focused on patients with hemophilia A or B; (2) tested the use of remote telehealth interventions via the internet, wireless, satellite, telephone, and mobile phone media on patients and caregivers; and (3) reported on at least one of the following patient-/caregiver-focused outcomes related to empowering patients/caregivers to be active decision makers in the emotional, social, and medical management of the illness: quality of life, monitoring of bleeding episodes, joint damage or other measures of functional status, medication adherence, and patients' knowledge. Implementation outcomes (user metrics, cost saving, and accuracy of electronic records) were also evaluated. Reviews, commentaries, and case reports comprising ≤10 cases were excluded.
Results: Sixteen articles fulfilled the inclusion criteria. The majority of the interventions (10/16, 62%) evaluated both implementation outcomes and patient-/caregiver-focused outcomes. User performance and accuracy and comprehensiveness of electronic records were also measured in most studies (4/16, 87%). The components of the interventions were rather homogenous and typically involved electronic logging and reminders for prophylactic infusions, reporting of spontaneous and traumatic bleeding events, monitoring of infusion product usage and home inventory, and real-time communication with health care professionals and hemophilia clinics. Telemedicine-supported education and information interventions seemed to be particularly effective among adolescent and young adult patients. Although the patients reported improvements in their health-related quality of life and perception of illness, telemonitoring devices did not appear to have a significant effect on quantifiable health outcomes such as joint health. Longitudinal studies seemed to suggest that the response and adherence rates to recording decreased over time.
Conclusions: Preliminary evidence from this review suggests that telehealth-delivered interventions could feasibly improve patients' adherence to medication use and promote independence in disease management. Given the complexity and resources involved in developing a mature and established system, support from a dedicated network of hemophilia specialists and data managers will be required to maintain the technology, improve adherence to prophylactic treatment and recording, and validate the electronic data locally.
Background: Children often have difficulty accessing subspecialty care, and telemedicine may improve access to subspecialty care, but information is lacking on how best to implement telemedicine programs to maximize acceptance and, ultimately, maximize impact for patients and their families.
Methods and Materials: To understand how subspecialty telemedicine is perceived and to identify design elements with the potential to improve telemedicine uptake and impact, we conducted and analyzed semi-structured interviews with 21 informants, including parents and caregivers of children with subspecialty care needs and adolescent and young adult patients with subspecialty care needs.
Results: Although informants saw the potential value of using telemedicine to replace in-person subspecialty visits, they were more enthusiastic about using telemedicine to complement rather than replace in-person visits. For example, they described the potential to use telemedicine to facilitate previsit triage encounters to assess whether the patient was being scheduled with the correct subspecialist and with the appropriate level of urgency. They also felt that telemedicine would be useful for communication with subspecialists after scheduled in-person visits for follow-up questions, care coordination, and to discuss changes in health status. Informants felt that it was important for telemedicine programs to have transparent and reliable scheduling, same-day scheduling options, continuity of care with trusted providers, clear guidelines on when to use telemedicine, and preservation of parent choice regarding method of care delivery.
Conclusions: Parents and patients articulated preferences regarding pediatric subspecialty telemedicine in this qualitative, hypothesis-generating study. Understanding and responding to patient and caregiver perceptions and preferences will be crucial to ensure that telemedicine drives true innovation in care delivery rather than simply recapitulating prior models of care.
Objectives: We sought to describe and analyze the quantitative and qualitative feedback obtained from participants and their caregivers of the Smart Heart study, a successful 12-month lifestyle intervention for children with overweight or obesity and congenital heart disease that provided remote lifestyle counseling, to improve future lifestyle interventions in children.
Methods: Thirty-six participants and caregivers were polled using a standard program evaluation questionnaire at the end of the intervention. Feedback was compiled into themes, and facilitators and barriers to program success were identified.
Results: There was a high level of satisfaction with the intervention and staff interactions as well as a low perceived burden of participation. There were also specific concerns, including mixed impressions regarding technology usage and a less impressive indication of actual impactful behavior change.
Conclusions: The study identified five themes, and corresponding facilitators and barriers to participant compliance, from the Smart Heart intervention feedback and offered suggestions for improving future lifestyle behavioral intervention study designs in children.
Practice Implications: Remote smartphone counseling is effective and efficient. It is recommended that the counseling messages are specific, the counseling schedule is patient-centric, patient burden is limited, methods with immediate patient feedback are used and family is included when feasible.
During the three-month closure of clinics and day centers in Iran due to the coronavirus disease 2019 (COVID-19) lockdown, parents of children with Autism Spectrum Disorder (ASD) became solely responsible for their care and education. Although centers maintained telephone contact, it quickly became evident that parents needed more detailed advice and guidance. Staff from 30 daycare centers volunteered to take part in a two-month online support and training course for 336 caregivers of children with ASD of different ages. In addition to the provision of visual and written information, synchronous video sessions were used to coach parents on the learning goals devised for the children. Both qualitative and quantitative data were collected to understand the acceptability of using telepractice and the outcomes achieved. A low dropout rate and positive feedback from parents indicated that they perceived telepractice sessions to be useful. The factors contributing to parents' satisfaction were identified. Although the use of telepractice would be a good alternative for caregivers in any future lockdowns, it could also be used in conjunction with daycare center services to encourage greater parental participation, or with families living in areas with no day centers. Further studies are needed to compare telepractice to usual daycare face-to-face interventions, and to document its impact and cost-effectiveness for parents and children.
Background: In attempting to achieve optimal metabolic control, the day-to-day management is challenging for a child with type 1 diabetes (T1D) and his family and can have a major negative impact on their quality of life. Augmenting an insulin pump with glucose sensor information leads to improved outcomes: decreased haemoglobin A1c levels, increased time in glucose target and less hypoglycaemia. Fear of nocturnal hypoglycaemia remains pervasive amongst parents, leading to chronic sleep interruption and lack of sleep for the parents and their children. The QUEST study, an open-label, single-centre randomized crossover study, aims to evaluate the impact on time in target, in hypoglycaemia and hyperglycaemia and the effect on sleep and quality of life in children with T1D, comparing a sensor-augmented pump (SAP) with predictive low glucose suspend and alerts to the use of the same insulin pump with a flash glucose measurement (FGM) device not interacting with the pump.
Methods/design: Subjects meeting the inclusion criteria are randomized to treatment with the SAP or treatment with an insulin pump and independent FGM for 5 weeks. Following a 3-week washout period, the subjects cross over to the other study arm for 5 weeks. During the week before and in the last week of treatment, the subjects and one of their caregivers wear a sleep monitor in order to obtain sleep data. The primary endpoint is the between-arm difference in percentage of time in glucose target during the final 6 days of each treatment arm, measured by a blinded continuous glucose measurement (CGM). Additional endpoints include comparison of quantity and quality of sleep as well as quality of life perception of the subjects and one of their caregivers in the two different treatment arms. Recruitment started in February 2017. A total of 36 patients are planned to be randomized. The study recruitment was completed in April 2018.
Discussion: With this study we will provide more information on whether insulin pump treatment combined with more technology (SmartGuard® feature and alerts) leads to better metabolic control. The inclusion of indicators on quality of sleep with less sleep interruption, less lack of sleep and perception of quality of life in both children and their primary caregivers is essential for this study and might help to guide us to further treatment improvement.
Digital health tools and technologies are transforming health care and making significant impacts on how health and care information are collected, used, and shared to achieve best outcomes. As most of the efforts are still focused on clinical settings, the wealth of health information generated outside of clinical settings is not being fully tapped. This is especially true for children with medical complexity (CMC) and their families, as they frequently spend significant hours providing hands-on medical care within the home setting and coordinating activities among multiple providers and other caregivers. In this paper, a multidisciplinary team of stakeholders discusses the value of health information generated at home, how technology can enhance care coordination, and challenges of technology adoption from a patient-centered perspective. Voice interactive technology has been identified to have the potential to transform care coordination for CMC. This paper shares opinions on the promises, limitations, recommended approaches, and challenges of adopting voice technology in health care, especially for the targeted patient population of CMC.
Background: Children with chronic kidney disease require specialist renal paediatric dietetic care, regardless of disease severity or geographical location; however, under‐resourcing makes this challenging. Videoconsultation may offer a solution but research exploring its acceptability is limited. The present study explored parent/carer and child perspectives of videoconsultation as an alternative or supplement to existing regional dietetic care.
Methods: Children and families using a regional paediatric nephrology service were recruited through purposeful sampling techniques. Renal paediatric dietitians used existing hospital software to host videoconsultations with families. Perspectives were subsequently explored in telephone interviews with the children, their parents and separately with the renal dietitians. Data were transcribed verbatim and an inductive framework analysis conducted.
Results: Twelve families took part in the study, comprising 13 parents and five children (aged 9 months to 14 years). Two renal dietitians were also interviewed. Six themes emerged which were 'Logistics', 'Understanding Information', 'Family Engagement', 'Establishing Trust', 'Willingness to Change' and 'Preferences'. Satisfaction with the videoconsultations was high, with no data security fears and only minor privacy concerns. Parents reported that screen‐sharing software enhanced their understanding, generating greater discussion and engagement compared to clinic and telephone contacts. Parents praised efficiencies and improved access to specialist advice, requesting that videoconsultations supplement care. Children preferred videoconsultations outright.
Conclusions: Dietetic videoconsultations were acceptable to families and perceived to be a feasible, high‐quality complement to regional specialist dietetic care. Enhanced understanding and engagement might improve self‐care in adolescents. The acceptability and feasibility of videoconsultations could address inequitable regional service provision.
Interventions for main carers of adult patients with anorexia nervosa (AN) can reduce the caregiving burden and increase caregiver skills. However, the effectiveness and feasibility for carers of adolescent patients, the optimal form of the intervention and long-term outcomes are largely unknown. We evaluated the efficacy and feasibility of the "Supporting Carers of Children and Adolescents with Eating Disorders in Austria" (SUCCEAT) workshop vs. online intervention. Main caregivers (parents) of adolescent patients with AN were randomly allocated to a workshop ( n = 50) or online version ( n = 50). Participants were compared to a non-randomised comparison group ( n = 49) receiving multi-family or systemic family therapy. Primary (General Health Questionnaire) and secondary outcomes were obtained at baseline, three-month and 12-month follow-up. Adherence was high for workshop and online participants (6.2 and 6.7 sessions completed out of 8). Intention-to-treat analyses revealed significant pre-post reductions in the primary outcome for the workshop (d = 0.87 (95%conficence interval (CI): 0.48; 1.26)) and online (d = 0.65 (95%CI: 0.31; 0.98)) intervention that were sustained at the 12-month follow-up. There was no significant group difference ( p = 0.473). Parental psychopathology and burden decreased and caregiver skills increased in all groups; the improvement of caregiver skills was significantly higher in SUCCEAT participants than in the comparison group. Online interventions for parents of adolescents with AN were equally effective as workshops. The improvements remained stable over time.
Teaching parents to conduct functional analyses and to implement functional communication training is an efficacious approach for treating socially maintained problem behavior (Derby et al., 1997). Research has found that delivering this assessment and intervention package via telehealth technologies is efficient and acceptable to caregivers in the United States (Wacker et al., 2013b). We replicated this work with families residing in rural and urban areas of eight countries. Two behavior therapists located in the United States conducted appointments in the participants' native languages, using interpreters as needed. Parent‐implemented functional analyses and treatment with functional communication training were highly effective in reducing problem behavior in children diagnosed with autism. Furthermore, parents rated the procedures as acceptable and indicated that the treatment would be effective with their children. These findings indicate that telehealth technologies are a viable option for clinicians to provide behavior analysis services to families around the world.
Purpose: Technological advances have made the delivery of psychological interventions via web-based platforms increasingly feasible. In recent years, there has been growth in the delivery of psychological interventions through web-based modalities, that is, telepsychology. Although there is evidence supporting the usability and feasibility of telepsychology for a range of populations, there is limited literature on clinician perceptions delivering telepsychology, particularly to pediatric rehabilitation populations. In this mixed-methods study, we report on clinician perspectives and experiences delivering telepsychology to children/families impacted by pediatric traumatic brain injury.
Method: Seventeen clinicians (psychologists and advanced psychology doctoral students) who delivered telepsychology interventions to children/families impacted by pediatric brain injuries completed surveys and interviews.
Results: Overall, clinicians reported that telepsychology was equivalent to face-to-face treatment in many regards (e.g. therapeutic alliance, weekly progress, child/family engagement, and establishing rapport). Clinicians reported a number of advantages of telepsychology over face-to-face interventions for this pediatric population including greater ease of scheduling, increased understanding of the family and home environments, and less caregiver stigma of behavioral health care. Disadvantages of telepsychology included difficulties reading nonverbal cues, logistical/technological issues, and greater disruptions during sessions.
Conclusions: Findings provide an important foundation for future investigations examining the merits of telepsychology versus traditional treatment for both pediatric rehabilitation populations.
Acute lymphoblastic leukaemia (ALL) is the most common childhood malignancy. Caring for children with ALL is an uncommon experience for parents without medical training. They urgently need professional assistance when their children are recovering at home. This paper documents the process of developing an Android application (app) "Care Assistant" for family caregivers of children with ALL. Key informant interviews and focus group studies were used before programming the app. The key informants and focus group members included: caregivers of children with ALL, cancer care physicians and nurses, and software engineers. We found several major challenges faced by caregivers: limited access to evidence-based clinic information, lack of financial and social assistance, deficient communications with doctors or nurses, lack of disease-related knowledge, and inconvenience of tracking treatments and testing results. This feedback was used to develop "Care Assistant". This app has eight modules: personal information, treatment tracking, family care, financial and social assistance, knowledge centre, self-assessment questionnaires, interactive platform, and reminders. We have also developed a web-based administration portal to manage the app. The usability and effectiveness of "Care Assistant" will be evaluated in future studies.
Background: Children in rural geographies are not universally able to access pediatric-trained palliative or hospice providers.
Objective: Determine whether telehealth inclusion of a familiar pediatric palliative care provider during the first two home-based hospice visits was acceptable to children, families, and adult-trained home hospice nurses in rural settings. Design: Case series. Setting: Home hospice in rural Midwest. Participants: Patients <18 years of age enrolling in home hospice for end-of-life care.
Measurements: The acceptability of telehealth inclusion of a hospital-based pediatric palliative care provider in home hospice visits to the family caregiver and home hospice nurse was measured using the Technology Acceptance Model Questionnaires with the inclusion of the child perspective when possible.
Results: Fifteen patients mean age of seven years enrolled. Family caregiver included 11 mothers (73%), 2 grandmothers (13%), and 2 fathers (13%). Fifteen nurses from nine hospice agencies participated. Twelve families (80%) included additional relatives by telehealth modality. Home distance averaged 172 miles with mean eight hours saved by accessing telehealth encounter. Visit content was primarily caregiver support, quality of life, goals of care, symptom management, and medication review. Telehealth acceptability improved between time points and was higher in family caregivers (4.3-4.9 on 5-point scale; p = 0.001) than hospice nurses (3.2-3.8 on 5-point scale; p = 0.05). All children able to self-report stated a "like" for telehealth, citing six reasons such as "being remembered" and "medical knowledge and care planning."
Conclusions: Pediatric palliative telehealth visits partnered with in-person hospice nurse offer acceptable access to services, while extending support.
Background: Children with physical disabilities report higher rates of sedentary lifestyle and unhealthy dietary patterns than non-disabled peers. These behaviors can increase comorbidities, caregiver burden, and healthcare costs. Innovative interventions are needed to assist caregivers of children with physical disabilities improve health behaviors.
Objective: /Hypothesis: The purpose of this pilot study was to test the usability and preliminary efficacy of an e-health and telecoaching intervention compared to telecoaching alone.
Methods: Parent/child dyads (n = 65) were randomized into either the e-health and telephone group (e-HT) or the telephone only group (TO). All participants received regular calls from a telecoach, and the e-HT group received access to a website with personalized weekly goals for diet and physical activity, and access to resources to meet these goals. At the conclusion of the intervention, participants in the e-HT group were asked to complete a semi-structured interview to discuss the usability of the e-health platform.
Results: Fifty of the 65 randomized dyads (77%) completed all baseline measures and had at least one intervention call. Forty families (80% of those that started the intervention) completed the study (50% spina bifida, 24% mobility limitation, diagnosis not reported). Age of the children ranged from 6 to 17 years old. Both groups had high adherence to scheduled phone calls (e-HT (n = 17): 81%, TO (n = 23): 86%); however no significant differences in dietary intake or physical activity were seen within or between groups. Primary themes to emerge from qualitative interviewers were: the platform should target children rather than parents, parents valued the calls more than the website, and schools need to be involved in interventions.
Conclusions: E-health interventions are a promising way to promote healthy behaviors in children with physical disability, but technology must be balanced with ease of use for parents while also engaging the child.
BACKGROUND: The prevalence of mild cognitive impairment (MCI) and mild neurocognitive disorder (mNCD) are steadily increasing in Canada. Information and communication technologies (ICTs) in health represent an innovation to promote home care and autonomy for people with various degrees of cognitive impairment. The objective of this study is to develop a web-based multicriteria decision support tool adapted to older adults with MCI or mNCD, their informal caregivers, and health care providers (HCPs) to support the development and implementation of ICTs adapted to the needs and preferences of people with cognitive impairments and their caregivers. METHODS: We used a participatory research strategy to develop of a decision support tool for the use of ICTs focused on the needs of patients, their caregivers, and HCPs. Data collection consisted of semi-structured interviews with elderly people with MCI (N = 10) and caregivers of people with mNCD (N= 7) to explore their current knowledge and perceptions of various ICTs as well as their needs and preferences for such interventions and a focus group with HCPs to understand their perceptions of the needs of seniors with MCI and caregivers of people with mNCD. RESULTS: ICTs are seen as a beneficial solution to promote home care and autonomy for people with cognitive disorders. ICTs provide a sense of security and peace of mind, especially for caregivers of people with mNCD. However, the complexity and high cost of ICTs as well as the lack of support appear to be major limits to their use. HCP recognize the value of e-Health but claim to lack reliable information and were therefore highly unsure to recommend its use. CONCLUSIONS: People suffering from cognitive disorders and their caregivers are generally open to technological developments and favour the use of ICTs. For health professionals, continuous training on ICTs would make them more comfortable to recommend them to patients and their families. Although the use of ICTs is promising for maintaining elderly people with cognitive disorders at home, our study shows that it will be necessary to find ways to make them accessible to promote their use.
Background: Dementia care is largely provided by informal caregivers, which can present significant challenges and increase caregivers' burden. Humanoid socially assistive robots (SARs) have the potential to provide assistance, but evidence is missing. Objectives: The aim was to explore the psychosocial effects of Coach Pepper (humanoid SAR system "AMIGO" combined with a tablet PC-based dementia training) versus an exclusive tablet PC-based dementia training on informal caregivers of people with dementia living at home (as well as their experiences). Methods: A randomized controlled trial with a complementary qualitative part was performed (May 2019-March 2020). 32 informal caregivers of people with dementia living at home participated in the study. The intervention group received Coach Pepper and the control group received only the tablet-based dementia training. The duration of the intervention was three weeks per household. Data was collected at baseline and after the intervention by standardized questionnaires for caregiver burden (primary outcome), quality of life, depressive symptoms and affect. Additionally, interviews about caregivers' experiences were conducted in the intervention group. Results: Participants were on average 58.2 (±12.5) years old and predominantly female (68.8%). Quality of life, depressive symptoms and affect demonstrated no significant differences regarding between-group mean changes, neither did caregivers' burden, which showed decreasing tendencies of burden in the intervention and control group (Zarit Burden Interview, -2.7±8.7 vs. -4.4±6.4, p=0.2552). Qualitative findings revealed that participants had positive attitudes regarding Coach Pepper and experienced it as neutral in terms of burden. Some stated that Coach Pepper provided relief/more free time by entertaining the persons with dementia. However, some participants stated that they had to invest additional time until the person with dementia was able to engage with Coach Pepper and that its usability should be improved in certain areas (e.g., communication) to constitute more support for caregivers. Conclusions: Coach Pepper had no significant psychosocial effects on informal caregivers of people with dementia. Qualitative findings demonstrated the participants' positive attitudes but highlighted a need for improvement regarding its usability. This study contributes to the development/modification of Coach Pepper based on caregivers' needs in dementia care.
Background: There is a knowledge gap for implementing tele-rehabilitation (telerehab) after hip fracture. We recently conducted a clinical trial (ClinicalTrials.gov Identifier: NCT02968589) to test a novel online family caregiver-supported rehabilitation program for older adults with hip fracture, called @ctivehip. Objectives: In this qualitative substudy, our objective was to use semi-structured interviews to explore family caregivers experience with the telerehab program. Methods: Twenty-one family caregivers were interviewed between three and six months after the older adults completed @ctivehip. One occupational therapist with research and clinical experience, but not involved in the main trial, conducted and transcribed the interviews. We conducted a multi-step content analysis, and two authors completed one coding cycle and two recoding cycles. Results: Family caregivers who enrolled in @ctivehip were satisfied with the program, stated it was manageable to use, and perceived benefits for older adults’ functional recovery after hip fracture. They also suggested im-provements for the program content, such as more variety with exercises, and increased monitoring by health professionals. Conclusions: This work extends existing literature and generates research hypotheses for future studies to test telerehab content and program implementation.
Background: The worldwide increase in community-dwelling people with dementia underscores the need for innovative eHealth technologies that aim to provide support to both patients and their informal caregivers in the home setting. However, sustainable implementation of eHealth technologies within this target group can be difficult. Objective: The goal of this study was to gain a thorough understanding of why it is often difficult to implement eHealth technologies in practice, even though numerous technologies are designed to support people with dementia and their informal caregivers at home. In particular, our study aimed to (1) provide an overview of technologies that have been used and studied in the context of informal dementia care and (2) explore factors influencing the implementation of these technologies. Methods: Following an umbrella review design, five different databases were searched (PubMed, PsycINFO, Medline, Scopus, and Cochrane) for (systematic) reviews. Among 2205 reviews retrieved, 21 were included in our analysis based on our screening and selection procedure. A combination of deductive and inductive thematic analyses was performed, using the Nonadoption, Abandonment, Scale-Up, Spread, and Sustainability (NASSS) framework for organizing the findings. Results: We identified technologies designed to be used “by informal caregivers,” “by people with dementia,” and “with people with dementia.” Within those groups, most of the represented technologies included, respectively: (i) devices for in-home monitoring of lifestyle, health, and safety; (ii) technologies for supporting memory, orientation, and day structure; and (iii) technologies to facilitate communication between the informal caregiver and person with dementia. Most of the identified factors influencing implementation related to the condition of dementia, characteristics of the technology, expected/perceived value of users, and characteristics of the informal caregiver. Considerably less information has been reported on factors related to the implementing organization and technology supplier, wider institutional and sociocultural context of policy and regulations, and continued adaptation of technology over time. Conclusions: Our study offers a comprehensive overview of eHealth technologies in the context of informal dementia care and contributes to gaining a better understanding of a broad range of factors influencing their implementation. Our results uncovered a knowledge gap regarding success factors for implementation related to the organizational and broader context and continuous adaptation over the long term. Although future research is needed, the current findings can help researchers and stakeholders in improving the development and implementation of eHealth technologies to support informal dementia care.
Background: The goal of the present study was to determine whether a remote activity monitoring (RAM) system benefited caregivers who aided relatives with Alzheimer’s disease or related dementias (ADRD) living at home. We hypothesized that over 18 months, families randomly assigned to receive RAM technology in the home of the person with ADRD would experience statistically significant (p <.05): 1) improvements in caregiver self-efficacy and sense of competence when managing their relative’s dementia; and 2) reductions in caregiver distress (e.g., burden, role captivity, and depression). Methods: An embedded mixed methods design was utilized, where 179 dementia caregivers were randomly assigned to receive RAM or not. Caregivers were surveyed bi-annually over an 18-month period to collect quantitative and qualitative data on RAM’s effects. Semi-structured interviews with 30 caregivers were completed following the 18-month data collection period to explore more in-depth how and why RAM was perceived as helpful or not. Results: Growth curve models showed no direct or moderation effect of RAM on dementia caregiver outcomes. The qualitative data revealed a complex utilization process of RAM influenced by the care environment/context as well as the temporal progression of ADRD and the caregiving trajectory. Conclusions: The findings suggest the need for developing more effective mechanisms to match appropriate technologies with the heterogeneous needs and care contexts of people living with ADRD and their caregivers. A triadic approach that incorporates professional care management alongside passive monitoring systems such as RAM may also enhance potential benefits. Trial registration: ClinicalTrials.govNCT03665909, retrospectively registered on 11 Sept 2018.
Background: Currently, the care for elderly people is provided mainly on an informal basis by relatives. This is often associated with psychological and physical stress. Caregiving relatives usually take over the role unprepared and they lack both knowledge and skills to fulfil the tasks. Therefore, arrangements must be made to provide respite for family carers. Simulation training is a validated experiential learning tool traditionally incorporated in health professional education but has not been commonly used in the hands-on training of informal caregivers. Objectives: This study tried to measure whether participation in a special simulation training affects the trust in one's own ability to care, the quality of life and the stress perception of caring relatives. Methods: 98 caring relatives participated in the prospective, controlled (non-randomized) intervention study. The intervention involved an eight-month educational program in a simulation-training center in Graz (Austria). The program is either Manikin-based or Standardized Patient simulation trainings and take place in a show apartment. The impact on the caregiving competence, the quality of life and the burden-of-care was measured at the beginning (T1), after four months (T2) and after eight months (T3) using validated questionnaires (Self-Efficacy Scale, EQ-5D-5L and HPS). Results: The results show a significant influence of the education program on self-efficacy (p 0.0018) and the increase in knowledge (p 0.04) of the participants. With regard to the subjective quality of life and the perception of stress no significant effects were shown. Conclusions: The results show that the participation of family carers at the education program has different influence on the defined parameters. Not only the stable quality of life of the intervention group but also the short-term significant reduction in subjective stress perception directly after the training can be emphasized as positive indicators for the program. Key messages The results show that informal caregivers benefit from simulation training, since they can apply at home what they have learned during the training. Simulation training for informal caregivers significant influence their self-efficacy and the increase in knowledge.
Objectives: To compare online cognitive-behavioral therapy (CBT) with and without telephone support respectively to online psychoeducation in a randomized controlled trial (RCT) in caregivers of people with dementia with mild anxiety or depression. Methods: Three-arm parallel-group RCT comparing online CBT with and without telephone support respectively to online psychoeducation. Online study with caregivers of people with dementia. The primary outcome measure was mental health measured by General Health Questionnaire–12 (GHQ-12) at 26 weeks. Secondary outcomes included the Hospital Anxiety and Depression Scale (HADS); the Relative Stress Scale (RSS) and the Short Sense of Competency Questionnaire. The primary analysis focused on people completing GHQ-12 at both baseline and 26 weeks, evaluated using analysis of covariance. Results: 638 people were randomized to the 3 treatment arms, of whom 208 were included in the analysis population. There were significant improvements in GHQ-12 in all treatment arms compared to baseline (P < .001 for all interventions), but neither CBT with nor without telephone support conferred any significant advantage compared to psychoeducation. For the secondary outcomes, there were no significant differences between CBT with telephone support and psychoeducation, but CBT without telephone support was less effective than psychoeducation with respect to HADS depression subscale [mean difference 1.86, 95% confidence interval (CI) 0.61, 3.11; P = .004] and caregiver stress (RSS mean difference 3.11, 95% CI 0.13, 6.09; P = .04). Good safety was achieved in all 3 treatment arms, with no deaths or serious adverse events. Conclusions and Implications: Online CBT with telephone support and psychoeducation both achieved significant benefits over 26 weeks compared with baseline in mental health and mood, but there were no advantages for CBT compared with the psychoeducation intervention. CBT without telephone support was less effective with respect to mood outcomes than psychoeducation and should not be recommended based on current evidence.
Background: To synthesise existing qualitative evidence regarding the experiences of people living with cancer and their family caregivers using eHealth technology in their home setting. Method: A narrative review using a systematic approach was utilised. Five databases (PubMed, CINAHL, EMBASE, PsycINFO and the Cochrane Library) were searched using a tailored search strategy to identify primary research articles published between January 2005 and May 2021. Studies were quality appraised using the Critical Appraisal Skills Programme's Qualitative Studies Checklist and the Mixed Method Appraisal Tool, where relevant. Identified studies were appraised by three reviewers and data were extracted for analysis. Key themes were identified and agreed upon by the authors. Results: 28 empirical studies were included in the review. Five major themes emerged: (i) understanding of cancer and its care (ii) alignment and integration of eHealth technology into daily life (iii) connection and collaboration with healthcare professionals, family and peers (iii) reassurance and sense of safety (iv) and the psychosocial impact on the self during the cancer experience. Conclusions: eHealth technology can have positive role in the lives of people with cancer and their family caregivers, beyond the intended health outcomes of the intervention. Individual preferences amongst people with cancer and their family caregivers using eHealth technology must be considered, especially regarding cancer information delivery, content and support methods. This review underlines a critical need for further in-depth evidence on the personal meaning and relationships people with cancer and their family caregivers develop with eHealth technology in an ambulatory care setting.
Background: Cancer is a taxing chronic disease that demands substantial care, most of which is shouldered by informal caregivers. As a result, cancer caregivers often have to manage considerable challenges that could result in severe physical and psychological health consequences. Technology-based interventions have the potential to address many, if not all, of the obstacles caregivers encounter while caring for patients with cancer. However, although the application of technology-based interventions is on the rise, the term is seldom defined in research or practice. Considering that the lack of conceptual clarity of the term could compromise the effectiveness of technology-based interventions for cancer caregivers, timely research is needed to bridge this gap. Objective: This study aims to clarify the meaning of technology-based interventions in the context of cancer caregiving and provide a definition that can be used by cancer caregivers, patients, clinicians, and researchers to facilitate evidence-based research and practice. Methods: The 8-step concept analysis method by Walker and Avant was used to analyze the concept of technology-based interventions in the context of cancer caregiving. PubMed, PsycINFO, CINAHL, and Scopus were searched for studies that examined technology-based interventions for cancer caregivers. Results: The defining attributes of technology-based interventions were recognized as being accessible, affordable, convenient, and user-friendly. On the basis of insights gained on the defining attributes, antecedents to, and consequences of technology-based interventions through the concept analysis process, technology-based interventions were defined as the use of technology to design, develop, and deliver health promotion contents and strategies aimed at inducing or improving positive physical or psychological health outcomes in cancer caregivers. Conclusions: This study clarified the meaning of technology-based interventions in the context of cancer caregiving and provided a clear definition that can be used by caregivers, patients, clinicians, and researchers to facilitate evidence-based oncology practice. A clear conceptualization of technology-based interventions lays foundations for better intervention design and research outcomes, which in turn have the potential to help health care professionals address the needs and preferences of cancer caregivers more cost-effectively.
Background: Family caregivers of patients with a destination therapy left ventricular assist device play a central and formalized role in postimplant care. Objectives: We aimed to characterize longitudinal stress, predictors and correlates of stress, and coping processes among left ventricular assist device caregivers. Methods: We performed a sequential, exploratory, mixed-methods study from 6 diverse left ventricular assist device programs. The primary outcome for the quantitative analysis was the Perceived Stress Scale-10 at 6 months (0-40). Based on the quantitative findings and guided by the Transactional Model of Stress and Coping, semistructured interviews explored causes of stress and coping processes. Integration was performed during the qualitative and interpretation phase. Results: A total of 96 caregivers met inclusion criteria for quantitative analysis. Mean (SD) Perceived Stress Scale score was 14.3 (5.5) preimplant and 11.8 (6.9) at 6 months. Preimplant, only decreased preparedness for caregiving was associated with higher Perceived Stress Scale score at 6 months. At 6 months, increased caregiver depressive symptoms, decreased caregiver preparedness for caregiving, and lower patient quality of life were associated with higher Perceived Stress Scale score. Qualitative analysis of 25 caregivers revealed the causes of stress coalesced around 3 themes: (1) lack of preparedness to be a caregiver, (2) uniqueness of stress for the caregiver and patient situation, and (3) caregiving responsibilities physically and emotionally impacting caregivers. To cope with stress, most caregivers employed emotion-focused coping. Conclusions: In family caregivers of patients with a left ventricular assist device, higher perceived stress was associated with lower caregiver preparedness, higher caregiver depressive symptoms, and lower patient quality of life. Emotion-focused coping strategies were common for caregivers. Future work should better prepare caregivers for this role and support them through the caregiving experience. Registration: URL: https://www.clinicaltrials.gov; Unique identifier: NCT02344576.
Objectives: We aim to establish the feasibility and acceptability of the Tele-STELLA (Support via Telehealth: Living and Learning with Advancing Alzheimer's Disease and Related Dementias) intervention. We will also assess the efficacy of the intervention in reducing the frequency of behavioural symptoms of dementia as well as family Care Partner reactivity to the symptoms. Methods: This is a multi-component, quasi-experimental study that focuses on facilitating effective management of behavioural symptoms that occur in the later stages of dementia. Family Care Partners (n = 124) for persons with Alzheimer's disease will participate in two 8-week videoconferencing components that address behavioural symptoms—in both the persons with Alzheimer's disease and their Care Partners. In the first component (‘Nova’), Care Partners work with one nurse for an hour/week for 4 weeks, then they join a small group for another 4 weeks. In the second component (‘Constellation’), Care Partners work in a larger group to hone skills and knit supportive relationships. Behavioural symptom frequency and Care Partner reactivity to the behaviours will be measured prior to, during and after the intervention. The study is funded by the United States National Institute on Aging (R01AG067546); funding was initiated as on February, 2021. Discussion: Tele-STELLA fills a gap in current videoconference-based psychoeducational interventions in that it offers real-time interaction with nurses and peers. The intervention was designed with feedback by pilot participants. This study will assess Tele-STELLA in its current, novel format; thus, preparing it for a larger, future randomized controlled trial. Impact: Tele-STELLA addresses symptoms that occur in the later stages of dementia, providing families with tools to facilitate effective behavioural management. Because Tele-STELLA is implemented via videoconferencing, it targets Care Partners who face barriers to support, such as cost and transportation. Trial Registration: This trial is registered with ClinicalTrials.gov (#NCT04627662).
Backgrounds: As the prevalence of dementia rises, caregiver burden also increases in South Korea, especially for informal family caregivers. Objectives: This study aimed to analyze factors affecting caregiver burden by the severity of dementia based on data of patients in Seoul. Methods: A total of 12,292 individuals aged ≥65 years enrolled in the Seoul Dementia Management Project from 2010 to 2016 in an online database were selected. Caregiver’s burden was assessed using the Korea version of Zarit Burden Interview. Multiple regression analyses were performed to determine factors associated with primary caregiver’s burden after stratifying the severity of dementia. Results: Most patients showed moderate levels of cognitive impairment (49.4%), behavior problems (82.6%), and ADL dependency (73.6%). After stratifying the severity of dementia, caregivers caring for patients with mild symptoms of dementia were experienced with higher caregiver burden if patients were under a lower score of IADL. Significant factors for caregiver burden among caregivers supporting patients with moderate symptoms of dementia include caregivers’ residence with patients, subjective health status, and co-work with secondary caregivers. Lastly, caregivers for patients with severe dementia symptoms experienced a higher caregiver burden from limited cognitive function, problematic behavior, and caregivers’ negative health status. Conclusion: In terms of sample size, this study had far more patients than any other domestic or international study. It was meaningful in that it analyzed characteristics of patients with dementia and caregivers affecting the burden of caregivers in Korea. Intensive social supports with multiple coping strategies focusing on different levels of patients’ clinical symptoms and caregivers’ needs should be planned to relieve the caregiver burden.
Background: The COVID-19 pandemic has led to heightened levels of isolation and loneliness for millions of individuals and families worldwide, resulting in adverse health and mental health outcomes. Persons with dementia and their family caregivers are particularly vulnerable due to the deleterious impact of social isolation on both dementia symptoms and caregiver burden. One of the greatest challenges for dementia patients has been accessing dementia care services during COVID-19 lockdowns. In the Pacific island of Guam, the pandemic quickly led to the closure of senior centers, adult day care centers, family caregiver support programs, and other social services for older adults and their families in March 2020. As a result, persons with dementia suddenly found themselves isolated at home and dependent upon family members to provide round-the-clock care. Objectives: This presentation will describe the development of an innovative telehealth outreach program that was launched in Guam in the summer of 2020, three months after the first COVID-19 case had appeared on the island. Methods: The program was designed to provide improved access to social support and specialized community services for persons with dementia and their family caregivers. There are four components: (1) virtual family caregiver support groups where participants can share the stresses and challenges of caring for a loved one with dementia with others who are going through similar experiences; (2) virtual presentation and consultation sessions led by dementia care specialists from the community providing easy access to dementia care information and services; (3) 24/7 family caregiver support networks through mobile messaging apps to mitigate social isolation and ensure the availability of support in times of crisis; and (4) telehealth family counseling for persons with dementia and their family members employing narrative approaches that embrace the oral storytelling traditions of Pacific island cultures. Results: The community response has been strong with approximately 50-60 family caregivers and persons with dementia participating in the program monthly. Conclusions: Project outcomes suggest that telehealth outreach services represent an effective and sustainable approach to connecting persons living with dementia and their family caregivers to community resources during times of isolation.
Background: Family caregivers of hemodialysis patients are the first and most crucial source of care at home. They experience many problems in the care of hemodialysis patients, which can affect their quality of life and hope, affecting the quality of care provided to patients. Objectives: This study aimed to determine the relationship between quality of life and hope in family caregivers of hemodialysis patients. Methods: A cross-sectional (descriptive-analytical) study performed on 300 family caregivers in the east of Mazandaran province in Iran. Data were collected using the Family Caregiver Quality of Life (FQOL), SF8 and adult hope scale. Data analysis was performed in SPSS version 16, and a P-value of below 0.05 was considered statistically significant. Results: The results showed that, there was a direct and significant relationship between hope and quality of life. However, the quality of life was significantly lower in suburban residents, the unemployed, spouses, people with lower education and income levels, caregivers who cannot leave their patients alone, those living with their patients in the same house, and those taking care of male patients, compared to other participants (P < 0.05). Suburban residents, the unemployed, people with an insufficient level of income, and those living with their patients in the same house had significantly lower hope, compared to other subjects. Conclusion: Since an increase of hope and quality of life of caregivers can cause improved quality of patient care, it is recommended that hope-based educational programs and interventions be implemented for caregivers.
Background: Informal caregivers of people with dementia provide the majority of health-based care to people with dementia. Pro-viding this care requires knowledge and access to resources, which caregivers often do not receive. Objectives: We set out to evaluate the effect of online educational tools on informal caregiver self-efficacy, quality of life, burden/stress, depression, and anxiety, and to identify effective processes for online educa-tional tool development. Methods: We conducted a scoping review of articles on online educa-tional interventions for informal caregivers of people with dementia searching CINAHL, MEDLINE, EMBASE, and PubMed from 1990 to March 2018, with an updated search conducted in 2020. The identified articles were screened and the data were charted. Results: 33 articles that reported on 24 interventions were included. There is some evidence that online interventions improve caregiver-related outcomes such as self-efficacy, depression, dementia knowledge, and quality of life; and decrease care -giver burden. Common findings across the studies included the need for tailored, stage-specific information applicable to the caregiver's situation and the use of psychosocial techniques to develop the knowledge components of the interventions. Conclusion: We demonstrate the importance of having caregivers and health-care professionals involved at all stages of tool concep-tualization and development. Online tools should be evaluated with robust trials that focus on how increased knowledge and development approaches affect caregiver-related outcomes.
Objectives: The current exploratory study sought to develop and pilot a Facebook-delivered health-promoting self-care intervention for caregivers of children with developmental disabilities (DD). Methods: Survey and focus group methods were used to gain information about the participation of caregivers of children with DD in existing Facebook support groups and their experiences related to stress, self-care, and social support that would aid in intervention development. Results were used in concert with existing guidance to determine the content and targets of the intervention. Caregivers were recruited to participate in a Facebook group-delivered intervention focused on broad areas of self-care including physical health, psychological health, social health, and work health. The Facebook group-delivered intervention, designed to target these identified areas using social support, was piloted over an 8-week period with caregivers of children with DD. Results: Across all variables, differences from pretest to posttest were statistically significant, with small to large effect sizes.
Background: eHealth literacy is a critical factor that influences caregivers’ well-being. Objective: The purpose of this study is to examine the association between eHealth literacy, education, and caregiver burden among Chinese caregivers of older adults with cognitive impairment. Methods: Data came from structured interviews with 300 primary family caregiver–care recipient dyads in Wuhan, China. We used logistic regression to examine the association between eHealth literacy, education, and caregiver burden. Results: An interaction effect between eHealth literacy and education on caregiver burden was identified. eHealth literacy was positively associated with caregiver burden among caregivers with less than a high school education, but not among those with a high school education or above. eHealth literacy is salient in the burden experienced by caregivers with low education. Conclusions: eHealth literacy needs to be enhanced with health information verification from health professionals and programs to support caregiving efficacy to realize its positive impact on caregivers’ mental health.
Background: Worldwide, millions of people with advanced cancer and their family caregivers are experiencing physical and psychological distress. Psychosocial support and education can reduce distress and prevent avoidable healthcare resource use. To date, we lack knowledge from large-scale studies on which interventions generate positive outcomes for people with cancer and their informal caregivers’ quality of life. Objectives: This protocol describes the DIAdIC study that will evaluate the effectiveness of two psychosocial and educational interventions aimed at improving patient-family caregiver dyads’ emotional functioning and self-efficacy. Methods: We will conduct an international multicenter three-arm randomized controlled trial in Belgium, Denmark, Ireland, Italy, The Netherlands, and the United Kingdom. In each country, 156 dyads (936 in total) of people with advanced cancer and their family caregiver will be randomized to one of the study arms: 1) a nurse-led face-to-face intervention (FOCUS+), 2) a web-based intervention (iFOCUS) or 3) a control group (care as usual). The two interventions offer tailored psychoeducational support for patient-family caregiver dyads. The nurse-led face-to-face intervention consists of two home visits and one online video session and the web-based intervention is completed independently by the patient-family caregiver dyad in four online sessions. The interventions are based on the FOCUS intervention, developed in the USA, that addresses five core components: family involvement, optimistic outlook, coping effectiveness, uncertainty reduction, and symptom management. The FOCUS intervention will be adapted to the European context. The primary outcomes are emotional functioning and self-efficacy of the patient and the family caregiver, respectively. The secondary outcomes are quality of life, benefits of illness, coping, dyadic communication, and ways of giving support of the patient and family caregiver. Discussion: DIAdIC aims to develop cost-effective interventions that integrate principles of early palliative care into standard care. The cross-country setup in six European countries allows for comparison of effectiveness of the interventions in different healthcare systems across Europe. By focusing on empowerment of the person with cancer and their family caregiver, the results of this RCT can contribute to the search for cost-effective novel interventions that can relieve constraints on professional healthcare. Trial registration: Registration on ClinicalTrials.gov on 12/11/2020, identifier NCT04626349. Date and version identifier: 20211209_DIAdIC_Protocol_Article.
Background: Patient engagement is critical for realizing the value of telehealth modalities such as the patient portal. Family caregiver engagement may also be critical for facilitating the use of the patient portal among adult patients, including older adults. Objective: This study aims to analyze the 2019 Health Information National Trends Survey to characterize family caregivers’ use of their care recipient’s patient portal in terms of sociodemographic, health, and caregiving characteristics and caregivers’ use of their own portal. Methods: We conducted a secondary analysis of cross-sectional data from the National Cancer Institute’s Health Information National Trends Survey 5 Cycle 3. This survey was administered to 5438 US adults between January and May 2019. We analyzed data from 320 respondents who were identified as family caregivers. We created measures to reflect family caregivers’ use of their care recipient’s and their own portal, caregiver demographic and caregiving characteristics, and care recipient health characteristics. Results: Over half of the caregivers (179/320, 55.9%) reported using their own portal at least once, whereas only one-third (105/320, 32.8%) reported using their care recipient’s record in the previous 12 months. Caregivers using their own portal were significantly more likely to use their care recipient’s portal (odds ratio 11.18; P<.001). Conclusions: Policies should enable patients to designate family caregivers who can access their patient portal. Providers could screen caregivers for challenges in their caregiving responsibilities that may be addressed through the portal so they can better support their adult relatives. Interventions to support family caregivers, especially older caregivers, in using their own portal may facilitate their use of their care recipient’s portal.
Background and Objectives: This systematic review aimed to identify and appraise the evidence for online peer-support interventions for caregivers of stroke survivors (with and without aphasia), and people with dementia, traumatic brain injury (TBI), Parkinson's disease and multiple sclerosis. Research Design and Methods: Systematic review conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Five databases were systematically searched up until September 2020: EMBASE, PubMed, CINAHL, Scopus and Web of Science. Two reviewers independently screened titles, abstracts and full-text articles. The methodological quality of included studies was assessed using Physiotherapy Evidence Database (PEDro) and Mixed-Methods Appraisal Tool (MMAT) scales. Interventions were described using the Template for Intervention Description and Replication (TIDieR) checklist. Results: A total of 3026 records were identified from database searches. Following screening, 18 studies reporting 17 interventions were included in this review. Most studies (n = 13) reported interventions for caregivers of people with dementia. All studies incorporated an element of peer support as part of the intervention, however, most interventions (n = 15) comprised both psychosocial and educational elements. Statistically significant changes were reported for 11 interventions in one or more of the following domains: caregiver knowledge, mental health, stress, depression, distress, burden, self-efficacy, mastery, helplessness and perceived support. Qualitative outcomes included perceived reductions in stress and increased emotional and informational support. Discussion and Implications: Positive changes in caregiver outcomes were identified in response to multi-component online interventions (i.e., peer support in addition to education). Peer support was often poorly described, limiting the conclusions that could be drawn about the intervention components which result in better outcomes. Online interventions may provide an accessible and effective means of supporting caregivers.
Objective: The objective of this review was to elucidate the evidence related to utilizing e-Health as a tool in improving the quality of life of informal caregivers of dependent patients due to cerebrovascular accident (CVA). Methods: This systematic review with meta-analysis includes 13 studies. For these studies, seven databases were searched between 2009 and 2019. A random-effects model was adopted for overall estimation and to explain the heterogeneity. Results: A random-effects model was adopted for overall estimation and to explain heterogeneity. The results did not demonstrate statistical significance (p<0.05) and low heterogeneity (I2 = 0). Conclusions: There is a tendency toward improvement in psychological health, solving care-related problems, as well as better prevention of problems arising from the burden. Therefore, new studies with larger sample size and primarily to conduct them for more than 6 months for the accuracy. Clinical relevance: This study reflects a trend toward improving psychological health, solving care-related problems, as well as improved the prevention of problems arising from the burden.
Objective: Caregiver stress is the term used to define the adverse effects of caregiving, and its prevalence among caregivers of people with traumatic brain injury (TBI) is amplified by the suddenness of brain injury. This systematic review aimed to identify whether remote interventions can be helpful in minimizing those financial, emotional, and physical stressors associated with caring for a person with TBI. Method: Studies were located by searching the following databases: PsycINFO, PubMed, Science Direct, Web of Science, Academic Search Premier, CINAHL, Medline, and Cochrane Central Register of Controlled Trials. Studies were included if they met the following criteria: (a) The study must be published in English, (b) The study must be published in a peer-reviewed journal, (c) The study must implement a remote intervention specific to caregivers of people with TBI, and (d) One or more symptoms of caregiver stress must be measured as an outcome. Results: After the review process, 12 articles met the inclusion criteria for the study. Most of the studies were randomized controlled trials, used an online problem-solving module, and targeted parents of children/adolescents with a TBI. Ten out of the 12 studies (83.3%) found that remote/online interventions improved caregiver stress outcomes and only two studies did not find improvement in caregiver stress outcomes. Conclusion: Results from this systematic review indicate that online interventions can be as effective as in-person interventions in reducing the symptoms of caregiver stress for caregivers of people with TBI. Implications for practice, research, and policy are discussed. Impact and Implications: Remote interventions are effective in improving life satisfaction, quality of life, and overall caregiver functioning among caregivers of people with traumatic brain injury (TBI). Remote interventions are also effective in reducing depression, anxiety, psychological distress, and other psychiatric symptoms among caregivers of people with TBI. Support services for caregivers should consider remote interventions such as online support groups, online psychotherapy, and telephone interventions to reduce access barriers for caregivers of people with TBI.
Objectives: The aim of the study was to design and evaluate a goal-setting tip sheet to improve stroke family caregiver health as part of the Telephone Assessment and Skill-Building Kit program. Methods: A multimethod design using open-ended questions and rating forms was used in this study. Methods In two studies, the goal-setting tip sheet was evaluated by caregivers (N = 12; N = 6), researchers (N = 10; N = 3), clinicians (N = 8; N = 4), and technology experts (N = 4; N = 4). Rigorous qualitative content analysis procedures were used with descriptive statistics for ratings. Findings: Qualitative strengths and areas for improvement refined the goal-setting tip sheet. From 1 = strongly disagree to 5 = strongly agree, ratings averaged from 3.25 to 5.00 for strategies, accuracy, feasibility, and acceptability. Conclusions: The goal-setting tip sheet was found to be accurate, feasible, and acceptable. Future research is needed to determine the impact on caregiver health. Clinical Relevance Stroke caregivers often neglect their own health; goal setting has the potential to improve caregiver health.
Background: Dementia drastically impacts the quality of life (QOL) of both people living with dementia (PLwD) and their family caregivers. As dementia progresses and care needs escalate, the likelihood of institutionalization is increased, which is counter to the wishes of the majority of older adults and their family members. Dementia care apps can provide critical support and have the potential to improve the QOL of both PLwD and their family caregivers and reduce perceived caregivers' burden. However, there is a lack of understanding of the needs of both PLwD and their family caregivers related to dementia care apps. There is also a gap in understanding the privacy concerns in relation to the apps among older adults with dementia and their caregivers. Objectives: As such, the main aims of this systematic review are to understand the landscape of dementia mobile apps targeting PLwD and their caregivers with respect to the features of the apps, usability testing, and the privacy and security aspects of the app from the perspective of both app developers/researchers and the end users (PLwD and family caregivers who provide care of PLwD). Methods: Extensive databases, including ACM Digital Library, Cochrane Central Register of Controlled Trials, Compendex, Embase, Inspec, Ovid MEDLINE(R) Daily, Proquest Dissertations and These Global, PsycINFO, and Scopus, have been searched. All searches are from the inception of the databases. All peer-reviewed studies and articles written in the English language are included. Two reviewers will independently screen and select the studies with the involvement of a third reviewer for disagreements. Data will be abstracted using a custom data extraction form that is made based on the research questions. Critical Appraisal Skills Programme (CASP) checklists will be used to assess the study quality. As the first review of its kind, the findings from this review will provide valuable insights related to the needs of the dementia care apps for both PLwD and their family caregivers. Conclusions: The review will be relevant to health providers who are interested in using technologies to promote the independence of PLwD and reduce the stress experienced from caregivers of PLwD. The review will also serve as a guide to app developers and researchers to design usable and acceptable apps. In addition, the review will provide critical knowledge of the privacy and security features of the app to reveal the valid concerns from the end users and thus help with the uptake and adoption of the dementia care apps.
Background: Digital health solutions such as assistive technologies create significant opportunities to optimise the effectiveness of both health and social care delivery. Assistive technologies include ‘low-tech’ items, such as memory aids and digital calendars or ‘high-tech’ items, like health tracking devices and wearables. Depending on the type of assistive devices, they can be used to improve quality of life, effect lifestyle improvements and increase levels of independence. Acceptance of technology among patients and carers depends on various factors such as perceived skills and competencies in using the device, expectations, trust and reliability. Objectives: This service evaluation explored the impact of a pilot service redesign focused on improving health and wellbeing by the use of a voice-activated device ‘smart speaker’, Alexa Echo Show 8. Methods: A service evaluation/market research was conducted for a pilot service redesign programme. Data were collected via a survey in person or telephone and from two focus groups of patients (n = 44) and informal carers (n = 7). The age of the study participants ranged from 50 to 90 years. Also, the participants belonged to two types of cohort: one specifically focused on diabetes and the other on a range of long-term health conditions such as multiple sclerosis, dementia, depression and others. Results: The device had a positive impact on the health and social well-being of the users; many direct and indirect benefits were identified. Both patients and carers had positive attitudes towards using the device. Self-reported benefits included: reminders for medications and appointments improved adherence and disease control; increased independence and productivity; and for those living alone, the device helped combat their loneliness and low mood. Conclusion: The findings from the study help to realise the potential of assistive technology for empowering supporting health/social care. Especially, the season of COVID-19 pandemic has highlighted the need for remote management of health, the use of assistive technology could have a pivotal role to play with the sustainability of health/social care provision by promoting shared care between the care provider and service user. Further evaluation can explore the key drivers and barriers for implementing assistive technologies, especially in people who are ageing and with long-term health conditions.
Background: Patients living with palliative-stage cancer frequently require intensive care from their family caregivers. Without adequate community support services, patients are at risk of receiving inadequate care, and family caregivers are at risk for depression and poor health. For such families, in-home respite care can be invaluable, particularly when the services are flexible and staffed by trusted care providers, such as nurses. Other industries are using mobile apps to make services more flexible. However, few apps have been developed to coordinate nurse-provided respite care services, and to our knowledge, none have been designed in conjunction with families affected by cancer. Objective: The aim of this study is to develop a mobile health (mHealth) app prototype for coordinating flexible and trusted in-home respite care services provided by nurses to families coping with palliative-stage cancer in Québec, Canada. Methods: This user-centered design research comprises the core component of the iRespite Services iRépit research program. For this study, we are recruiting 20 nurses, 15 adults with palliative-stage cancer, and 20 of their family caregivers, from two palliative oncology hospital departments and one palliative home-care community partner. Overseen by an Expert Council, remote data collection will occur over three research phases guided by the iterative Information Systems Research Framework: Phase 1, brainstorming potential app solutions to challenging respite care scenarios, for better supporting the respite needs of both family caregivers and care recipients; Phase 2, evaluating low-fidelity proofs of concept for potential app designs; and Phase 3, usability testing of a high-fidelity interactive proof of concept that will then be programmed into an app prototype. Qualitative and quantitative data will be descriptively analyzed within each phase and triangulated to refine the app features. Results: We anticipate that preliminary results will be available by Spring 2022. Conclusions: An app prototype will be developed that has sufficient complimentary evidence to support future pilot testing in the community. Such an app could improve the delivery of community respite care services provided to families with palliative-stage cancer in Québec, supporting death at home, which is where most patients and their families wish to be. International Registered Report Identifier (IRRID): PRR1-10.2196/34652
Objective: To gather preliminary qualitative data that will assist in the codesign and development of a new informational and supportive website to assist informal cancer carers in Australia. Methods: Utilising a previously tested codesign process, informal carers' experiences and perspectives, including those of healthcare professionals', were examined via focus groups and/or interviews. Data were analysed via thematic analysis. Participants Rural (n=9) and urban (n=11) carers', and healthcare professionals' (n=8) perspectives were collected. Carers participated in a focus group (n=9) or telephone interview (n=11). Healthcare professionals completed an interview (n=6) or online survey (n=2). Results: Rural and urban carers typically felt ill prepared for their multitudinal caregiving responsibilities. Supporting patient-to-healthcare professional liaisons could especially challenge. Carers' biopsychosocial and fiscal strains were affected by patients' hardships and available informal supports. Rural carers described greater social support than urban carers. Both rural and urban carers also described discontentment related to a carer neglecting healthcare system. Both carers and healthcare professionals endorsed the need for a user-friendly, carer-specific website encompassing practical information and resources, peer-driven advice and evidence-based illness information, tailored to the Australian context. Conclusions: Carers and healthcare professionals recognise the pressing need for an Australian, cancer carer-specific online resource. Findings will inform the next phase, where a resource will be designed, developed and tested.
Background: COGNISANCE is an international research programme (Australia, UK, Canada, Netherlands, and Poland). In partnership with people living with dementia, informal care partners, health and social care professionals and key national and international dementia organisations and researchers, we have co-designed online toolkits aiming to improve post-diagnostic support for dementia. Methods: We have worked closely with local working groups representing members from key audiences and a design and marketing agency to run a series of workshops in five countries. The workshops to date have focussed on the key messages, motivators for information seeking, experiences of dementia diagnosis and post diagnostic support, the purpose for toolkits and the tone and branding appropriate for the key audiences for a resource that focusses on the first twelve months post-diagnosis. Results: Co-design workshops were successfully run concurrently in five partner countries. Each country's research team and local working groups remained highly engaged throughout the process. Key motivators for the toolkits led to a focus on a practical and empathetic resource that was tailored to the individual. The toolkits will be a website that has three separate pathways, one for people recently diagnosed with dementia, one for care partners and one for health and social care professionals. These will function to support communicating the diagnosis, post-diagnostic support and planning for the first year post diagnosis. The design and marketing agency have worked closely with research teams and local working groups throughout the co-design process to interpret and build iteratively on each workshop outcome. From this we have successfully produced a generic website that can be tailored in different locations to the three key audiences. Conclusion: In the co-design process, representative users identified the need for a practical, empathetic and individually-tailored resource. The toolkit will be a website that has an individual planning tool for the first twelve months following a dementia diagnosis. We are continuing the co-design process to develop a campaign. This will promote the key messages and toolkit, to plan for a life with dementia, ahead of user testing, implementation and evaluation.
Background: Dementia is a global public health priority with an estimated prevalence of 150 million by 2050, nearly two-thirds of whom will live in the Asia-Pacific region. Dementia creates significant care needs for people with the disease, their families, and carers. iSupport is a self-help platform developed by the World Health Organization (WHO) to provide education, skills training, and support to dementia carers. It has been adapted in some contexts (Australia, India, the Netherlands, and Portugal). Carers using the existing adapted versions have identified the need to have a more user-friendly version that enables them to identify solutions for immediate problems quickly in real time. The iSupport virtual assistant (iSupport VA) is being developed to address this gap and will be evaluated in a randomized controlled trial (RCT). Objective: This paper reports the protocol of a pilot RCT evaluating the iSupport VA. Methods: Seven versions of iSupport VA will be evaluated in Australia, Indonesia, New Zealand, and Vietnam in a pilot RCT. Feasibility, acceptability, intention to use, and preliminary impact on carer-perceived stress of the iSupport VA intervention will be assessed. Results: This study was funded by the e-ASIA Joint Research Program in November 2020. From January to July 2023, we will enroll 140 dementia carers (20 carers per iSupport VA version) for the pilot RCT. The study has been approved by the Human Research Committee, University of South Australia, Australia (203455). Conclusions: This protocol outlines how a technologically enhanced version of the WHO iSupport program-the iSupport VA-will be evaluated. The findings from this intervention study will provide evidence on the feasibility and acceptability of the iSupport VA intervention, which will be the basis for conducting a full RCT to assess the effectiveness of the iSupport VA. The study will be an important reference for countries planning to adapt and enhance the WHO iSupport program using digital health solutions.
Background: People living with dementia account for a large proportion of deaths due to COVID-19. Family carers are faced with making significant and emotive decisions during the pandemic, including decisions about end of life. Objectives: We aimed to explore the challenges faced by family carers of people living with dementia during the first wave of the COVID-19 pandemic in England, as reported by charity telephone support line staff, who were able to objectively discuss a range of different experiences of many different carers who call the helpline. In particular, we focussed on key concerns and areas of decision making at the end of life. Methods: We conducted a qualitative study using semi-structured interviews with eight telephone support line staff from two UK based charities who support carers of people living with dementia and those at the end of life. Interviews were conducted in the first wave of the pandemic in England in May–June 2020. Results: An overarching theme of uncertainty and reactivity during a crisis was identified, and within this, five main themes were identified: concerns about care transitions, uncertainty in engaging support and help, pandemic-motivated care planning, maintaining the wellbeing of the person living with dementia, and trust, loss of agency and confusion. Conclusions: Family carers may be reluctant to seek support because of fear of what may happen to their relative, which may include hospitalisation and becoming ill with COVID-19, care home placement, or not being able to be with a relative at the end of life. In some cases, a lack of trust has developed, and instead carers are seeking support from alternative services they trust such as nationally known charities.This study was used to inform the development of a decision aid to support family carers making decisions about care for their relative with dementia during the pandemic, who the lack the capacity to make their own decisions.
Background: Social distancing rules and the closure of services associated with the COVID-19 pandemic have strongly impacted the physical and mental health of people with dementia. Digital technologies can represent an effective means to compensate for the distress associated with social distancing rules and the decreased use of in-person services. More specifically, technologies such as smartphones, tablets, and smart home systems can minimize the negative effects of social distancing and isolation, and the pressure on health and care systems. Indeed, they can provide a continuity of care and social connectedness, while decreasing exposure to risk. However, barriers such as digital literacy and lower income households can impede the access and use of digital technologies. Objectives: The aim of this international study was to compare the use of technology by people with dementia from different care settings, and their informal carers across four countries (Italy, UK, Australia, and Poland). Methods: People with dementia and informal carers were invited to participate in semi-structured interviews. Verbatim transcripts were analysed by researchers in each country using inductive thematic analysis. Results: A total of 141 people with dementia and carers (47 in Italy; 50 in the UK; 18 in Australia; 26 in Poland) were interviewed. The analysis identified three overarching themes: 1) different uses of technology (three subthemes); 2) benefits of technology (three subthemes); 3) limitations of technology (three subthemes). Results show that calls, video calls, and group-chats were effectively used across countries to guarantee the continuity of relationships with professionals, families, and small groups of peers. Telemedicine was used with varying levels of satisfaction. Furthermore, the benefits experienced by carers exceeded those for people with dementia. Similar barriers were reported across countries, and were strictly associated with dementia deficits, low level digital literacy, and the need for carer’s supervision. Conclusions: These international findings highlight the importance to maximise the benefits related to the use of technology according to people with dementia’s impairment and care context. Moreover, it should be complementary to in-person care which should be provided, at least to some extent, even during pandemic times.
Background: Covid-19 has accelerated remote healthcare provision in primary care, with changes potentially permanent. The implementation of remote provision of health care needs to be informed by vulnerable populations, such as people living with dementia. AIM: To understand the remote healthcare experiences of patients living with dementia and their family carers during the Covid-19 pandemic. Methods: Qualitative interviews with community-based patients living with dementia and their carers were carried out between May-August 2020, while the Covid-19 pandemic was ongoing in England. Semi-structured interviews were conducted remotely by telephone or video call with 30 patients living with dementia and 31 carers. Data were analysed using thematic analysis. Results: Three main themes were derived relating to: proactive care at the onset of Covid-19 restrictions; avoidance of healthcare settings and services; and difficulties with remote healthcare encounters. People living with dementia and their carers felt check-up calls were reassuring but limited in scope and content. Some avoided healthcare services, wishing to minimise Covid-19 risk or reduce NHS burden, or encountering technological barriers. Difficulties in remote consultations included lack of prompts to remember problems, dealing with new emerging difficulties, rescheduling/missed calls, and inclusion of the voice of the person with dementia. Conclusions: While remote consultations could be effective, proactive calls could be more structured around needs. Consideration should be given to replace non-verbal prompts to describe problems, particularly for new health concerns. In continuing remote consultations, it is important to facilitate engagement with patients living with dementia and their carers to ensure good practice.
Background: Neuro-ICU hospitalization for an acute neurological illness is often traumatic and associated with heightened emotional distress and reduced quality of life (QoL) for both survivors and their informal caregivers (i.e., family and friends providing unpaid care). In a pilot study, we previously showed that a dyadic (survivor and caregiver together) resiliency intervention (Recovering Together [RT]) was feasible and associated with sustained improvement in emotional distress when compared with an attention placebo educational control. Here we report on changes in secondary outcomes assessing QoL. Methods: Survivors (n = 58) and informal caregivers (n = 58) completed assessments at bedside and were randomly assigned to participate together as a dyad in the RT or control intervention (both 6 weeks, two in-person sessions at bedside and four sessions via live video post discharge). We measured QoL domain scores (physical health, psychological, social relations, and environmental), general QoL, and QoL satisfaction using the World Health Organization Quality of Life Abbreviated Instrument at baseline, post treatment, and 3 months’ follow-up. We conducted mixed model analyses of variance with linear contrasts to estimate (1) within-group changes in QoL from baseline to post treatment and from post treatment to 3 months’ follow-up and (2) between-group differences in changes in QoL from baseline to post treatment and from post treatment to 3 months’ follow-up. Results: We found significant within-group improvements from baseline to post treatment among RT survivors for physical health QoL (mean difference 1.73; 95% confidence interval [CI] 0.39–3.06; p = 0.012), environmental QoL (mean difference 1.29; 95% CI 0.21–2.36; p = 0.020), general QoL (mean difference 0.55; 95% CI 0.13–0.973; p = 0.011), and QoL satisfaction (mean difference 0.87; 95% CI 0.36–1.37; p = 0.001), and those improvements sustained through the 3-month follow-up. We found no significant between-group improvements for survivors or caregivers from baseline to post treatment or from post treatment to 3 months’ follow-up for any QoL variables (i.e., domains, general QoL, and QoL satisfaction together). Conclusions: In this pilot study, we found improved QoL among survivors, but not in caregivers, who received RT and improvements sustained over time. These RT-related improvements were not significantly greater than those observed in the control. Results support a fully powered randomized controlled trial to allow for a definitive evaluation of RT-related effects among dyads of survivors of acute brain injury and their caregivers.
Background: There are about 9.5 million people with dementia in China. Up to 99% of them are cared for by their family caregivers. Family caregivers are confronted with considerable difficulties and challenges while providing care. They often experience high levels of emotional, physical, financial, and social burdens. Caregivers in rural areas experience an even higher level of burden compared to their counterparts in urban areas due to fewer health resources for dementia care. However, so far, no intervention study has been conducted to support family caregivers in rural areas of China. Objectives: The aim of this proposed study is to adapt and evaluate an evidence-based and culturally-tailored individualized telephone-based care support (ITBCS) program for family caregivers of people with dementia in rural China. Methods: A cluster randomized controlled trial (RCT) will be conducted to evaluate the effectiveness of the ITBCS compared with usual care for Chinese rural family caregivers of people with dementia. A total sample of 168 rural family caregivers will be recruited. The intervention components consist of a 3-month intensive telephone-based care support intervention followed by telephone-based follow-up consultations for 6 months. The control group will receive usual care services available for them. Outcome measures include carers’ subjective burden, depressive symptoms, health-related quality of life, social support, caregiving self-efficacy, and care recipients’ difficult behaviours and competence in activities of daily living at 3, 9 and 15 months after baseline. The potential cost-effectiveness of the ITBCS compared with usual care will be assessed as well. Discussion: If effective, the ITBCS program can be adapted and used in rural areas of China as a blueprint to improve the quality of home-based care for people with dementia. Findings from the present study are significant for developing evidence-based dementia care policy in rural China. Trial registration: Chinese Clinical Trial Registry, ChiCTR2000038821, Registered 4 April 2020, http://www.chictr.org.cn/showprojen.aspx?proj=62268.
Background: Care partners (ie, informal family caregivers) of individuals with health problems face considerable physical and emotional stress, often with a substantial negative impact on the health-related quality of life (HRQOL) of both care partners and care recipients. Given that these individuals are often overwhelmed by their caregiving responsibilities, low-burden self-management interventions are needed to support care partners to ensure better patient outcomes. Objective: The primary objective of this study is to describe an intensive data collection protocol that involves the delivery of a personalized just-in-time adaptive intervention that incorporates passive mobile sensor data feedback (sleep and activity data from a Fitbit [Fitbit LLC]) and real time self-reporting of HRQOL via a study-specific app called CareQOL (University of Michigan) to provide personalized feedback via app alerts. Methods: Participants from 3 diverse care partner groups will be enrolled (care partners of persons with spinal cord injury, care partners of persons with Huntington disease, and care partners of persons with hematopoietic cell transplantation). Participants will be randomized to either a control group, where they will wear the Fitbit and provide daily reports of HRQOL over a 3-month (ie, 90 days) period (without personalized feedback), or the just-in-time adaptive intervention group, where they will wear the Fitbit, provide daily reports of HRQOL, and receive personalized push notifications for 3 months. At the end of the study, participants will complete a feasibility and acceptability questionnaire, and metrics regarding adherence and attrition will be calculated. Results: This trial opened for recruitment in November 2020. Data collection was completed in June 2021, and the primary results are expected to be published in 2022. Conclusions: This trial will determine the feasibility and acceptability of an intensive app-based intervention in 3 distinct care partner groups: care partners for persons with a chronic condition that was caused by a traumatic event (ie, spinal cord injury); care partners for persons with a progressive, fatal neurodegenerative disease (ie, Huntington disease); and care partners for persons with episodic cancer conditions that require intense, prolonged inpatient and outpatient treatment (persons with hematopoietic cell transplantation). Trial Registration: ClinicalTrials.gov NCT04556591; https://clinicaltrials.gov/ct2/show/NCT04556591 International Registered Report Identifier (IRRID): DERR1-10.2196/32842
Background: Lack of social engagement and the resulting social isolation can have negative impacts on health and well-being, especially in senior care communities and for those living with dementia. Project VITAL leverages technology and community resources to create a network for connection, engagement, education, and support of individuals with dementia and their caregivers, and explores the impact of these interventions in reducing feelings of social isolation and increasing mood among residents during the COVID-19 pandemic. Methods: Through two phases, 600 personalized Wi-Fi-enabled iN2L tablets were distributed to 300 senior care communities (55% assisted living communities, 37% skilled nursing communities, 6% memory care communities, and 2% adult family-care homes) to connect and engage residents and their families. Different phases also included Project ECHO, a video-based learning platform, Alzheimer's Association virtual and online education and support for family caregivers, evidence-based online professional dementia care staff training and certification, and Virtual Forums designed to explore ways to build sustainable, scalable models to ensure access to support and decrease social isolation in the future. Tablet usage was collected over an 11-month period and an interim survey was designed to assess the effectiveness of the tablets, in preventing social isolation and increasing mood among residents during the COVID-19 pandemic. Results: A total of 105 care community staff (whose community used the tablets) completed the survey and overall, these staff showed a high level of agreement to statements indicating that residents struggled with loneliness and mood, and that the tablet was useful in improving loneliness and mood in residents and allowing them to stay in touch with family and friends. Additional positive results were seen through a variety of other responses around the tablets and Project ECHO. Conclusion: Overall, the tablets were shown to be an effective way to engage residents and connect them with friends and family, as well as being a useful tool for staff members. A third phase is currently underway in the homes of people with dementia and their family caregivers, which includes tablets and direct access to Alzheimer's Association virtual and online education and support programs.
Background and aims: This mixed‐methods study examined participants' acceptance and perception of using digital health for managing nutrition and participants' digital competence. The results will be formative for making digital nutrition education more effective and acceptable for people with Parkinson's disease (PwPD) and their informal caregivers. Methods: Qualitative data were collected through in‐person semi‐structured, dyadic interviews, and questionnaires from 20 dyads (20 PwPD and their caregivers) in the Northeastern United States and analyzed throughout the 2018 to 2019 academic year. Interview transcripts were deductively coded using the framework analysis method. Phrases related to acceptance of digital health were sub‐coded into accept, neutral, or reject and those related to perceptions of digital health were sub‐coded into perceived usefulness, perceived ease of use, and awareness of digital health. Quantitative data were analyzed using independent samples t tests and Fisher's exact tests. Qualitative codes were transformed into variables and compared to digital competence scores to integrate the data. An average acceptance rate for digital health was calculated through examining the mean percent of phrases coded as accept from interview transcripts. Results: Twenty‐five of 40 (62.5%) participants used the internet for at least 5 health‐related purposes and the average acceptance rate was 54.4%. Dyads rejected digital health devices if they did not see the added benefit. The majority of participants reported digital health to be useful, but hard to use, and about half felt they needed education about existing digital health platforms. There was no difference in digital competence scores between PwPD and their caregivers (28.6 ± 12.6). Conclusion: Findings suggest that dyads accept and use technology but not to its full potential as technology can be perceived as hard to use. This finding, combined with digital competence scores, revealed that education is warranted prior to providing a digital nutrition intervention.
Background: In the joint project "Mobile Care Backup'' funded by the German Federal Ministry of Education and Research, the smartphone-based app "MoCaB'' was developed in close cooperation with informal caregivers. It provides individualized, algorithm-based information and can accompany and support caring relatives in everyday life. After a multi-step development, informal caregivers tested the MoCaB app in a home setting at the end of the research project. Objectives: The goal was to find out how the test persons evaluate MoCaB and in which form the app can provide support to informal caregivers. Methods: Eighteen test persons caring for relatives participated in a four-week test of MoCaB. Guideline-based qualitative interviews to record usage behavior and experiences with the app were conducted after two and four weeks of testing, transcribed and analyzed using qualitative content analysis. Results: The test persons described the care-related information as helpful. The individualized, algorithm-based mode of information delivery and the exercises provided for family caregivers were generally rated as helpful, but their use depends on the individual usage style. Three dimensions can describe the effects of MoCaB: 1) expansion of care-relevant knowledge, 2) stimulation of self-reflection, and 3) behavior towards the care recipients. Discussion: With few exceptions, the testing caregivers felt that the MoCaB app was enriching. The support dimensions have an effect at different points in everyday life and vary in intensity, depending on the duration of the existing care activity and the individual preferences of the users. Conclusion: The way in which caregivers used the app was not always consistent with the expected behaviors. This demonstrates the relevance of open-ended, qualitative research methods in the evaluation of health apps.
Background: Informal caregivers, or carers (unpaid family members and friends), are instrumental to millions worldwide for the ongoing delivery of health and well-being needs. The risk of crisis points (eg, hospitalizations) for caregivers increases with the absence of physical activity. The COVID-19 pandemic is highly likely to have increased the risk of crisis points for caregivers by increasing the amount of time spent indoors due to shielding and lockdown restrictions. Thus, accessible evidence-based tools to facilitate physical activity for caregivers indoors are urgently needed. Objective: The aim of this study was to co-design and develop a novel mobile app to educate and support carers in the undertaking of regular physical activity at home during and beyond COVID-19 restrictions via integration of the transtheoretical model of behavior change and UK physical activity guidelines. Methods: We co-designed a mobile app, "CareFit," by directly involving caregivers, health care professionals, and social care professionals in the requirements, capturing, and evaluation phases of three Agile Scrum design and development sprints. Seven participants representing multistakeholder views took part in three co-design sessions, each of which was followed by a development sprint. Requirements for CareFit were grounded in a combination of behavioral change science and UK government guidelines for physical activity. Results: Participants identified different barriers and enablers to physical activity, such as a lack of time, recognition of existing activities, and concerns regarding safely undertaking physical activity. Requirements analysis highlighted the importance of simplicity in design and a need to anchor development around the everyday needs of caregivers (eg, easy-To-use video instructions). Our final prototype app integrated guidance for undertaking physical activity at home through educational, physical activity, and communication components. Conclusions: Integrating government guidelines with models of behavioral change into a mobile app to support the physical activity of carers is novel. We found that integrating core physical activity guidelines into a co-designed smartphone app with functionality such as a weekly planner and educational material for users is feasible. This work holds promise to fill the gap of effective physical activity solutions for caregivers both during and beyond the COVID-19 pandemic. Further work is now needed to explore the feasibility, acceptability, and usability of the approach in real-world settings.
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. Objective: 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.
Background: Little attention has been paid to how medication management technologies, designed for older adults, modify the participation of family caregivers. Methods: We developed a tablet-based ambient display that provides external cues to remind and motivate older adults to take their medications. This study aimed to understand the effect of ambient displays on the involvement of family members in the elderly's medication management. We conducted a 10-week study consisting of interviews administered weekly to nine elderly-caregivers. Findings: We identify that new involvement patterns of the family caregivers were provoked through external cues, which made them aware of older adults' medication adherence and encouraged younger relatives to help older adults.
Objective: This caregiver case study applies the lens of relational coordination theory (RC) to examine the value of telehealth as a medium of care coordination for a pediatric patient with hypermobile Ehlers-Danlos Syndrome (hEDS) during the COVID-19 pandemic. Background: The COVID-19 pandemic has placed an unprecedented burden on the delivery of healthcare around the globe and has increased the reliance on telehealth services. Delivering telehealth requires a high level of communication and coordination within and across providers as well as between providers, patients and their families. However, it is less clear how telehealth impacts the coordination of care. In this paper, we provide insight into the quality of care coordination between providers and an informal caregiver following policy changes to the provider payment structure in Massachusetts. Methods: This paper employs a single-case, autoethnographic study design where one of the authors uses their experiential insights, as mother of the patient, to inform a wider cultural and political understanding of the shift to remote caregiving for a pediatric patient with hEDS. Data was collected using reflective journaling, interactive interviews, and participant observation and analyzed using content analysis. Results: Findings revealed four interrelating roles of the caregiver including, logistics support, boundary spanner, home health aide, and cultural translator. The adoption of telehealth was associated with improved timeliness and frequency of communication between the caregiver and providers. Findings about the impact of telehealth adoption on accuracy of communication were mixed. Mutual respect between the caregiver and providers remained unchanged during the study period. Conclusions: This paper highlights areas where payer policy may be modified to incentivize timely communication and improve coordination of care through telehealth services. Additional insight from the perspective of an informal caregiver of a patient with a rare chronic disease provides an understudied vantage to the care coordination process. We contribute to relational coordination theory by observing the ways that caregivers function as boundary spanners, and how this process was facilitated by the adoption of telehealth. Insights from this research will inform the development of telehealth workflows to engage caregivers in a way that adds value and strengthens relational coordination in the management of chronic disease.
Background: Assistive Technology (AT) supports persons with dementia and their carers (family, friends and neighbours), yet little is known about experiences and the impact of AT on carers. We report on an exploratory survey that examined the types, uses, costs and impact of AT on carers as well as their quality of life. Methods: A cross-sectional survey using the Carers Assistive Technology Experience Questionnaire collected data from carers in the UK, who used at least one AT in the previous year and provided more than 10 h of care for a person with dementia, living at home. Carers completed the questionnaire online or on paper and information on AT, socio-demographic details, and Short-Form Health Survey (SF-12) data were collected. Descriptive and inferential statistics were used to report results and draw conclusions. Results: Data from 201 carers was analysed. Smartphones and tablet computers were the most frequently used AT. AT were used predominantly for safety, communication, and reminders. Carers usually make decisions on buying and continued use of AT. Multiple AT devices were used in the care of persons with dementia and number of AT used was associated with perceived satisfaction. Satisfaction with AT was not related to age, living arrangements and relationship of carers. From the SF-12, Mean Physical Component Score was 49.19 (95%CI- 47.75 to 50.63) and Mental Component Score was 45.37 (95%CI- 43.93 to 46.80). Women, carers in the 46–65 age group and carers who were not extremely satisfied with AT had lower MCS scores. Carers who lived with the person with dementia and older carers had lower PCS scores. Conclusions: Carers report that AT has a beneficial impact. Carers use multiple ATs, perceive AT to be satisfactory and recommend AT use to others. To support carers, we recommend establishment of centrally funded information sources and a loan store for AT. Further research on incremental addition of AT and changes to formal/paid care because of using AT should be undertaken. Practitioners, academics, manufactures and policy makers should consider the experiences of carers in research, development and use of AT to facilitate improved community living of people with dementia.
We are facing the 2050 aging wave that is calling us to prepare several strands of interventions to be ready on time. There is a need to foster the digital transformation of the care sector by the improvement of the digital literacy among older people, carers and care workers also using codesign approaches for the ICT usability and adoption in the social and health care domains. Moreover we need to switch from a reactive care model based on chronicity towards the adoption of a new one where citizens will be the co-maker of their own health.
Background: Elective colorectal cancer (CRC) surgeries offer enhanced surgical outcomes but demand high self-efficacy in prehabilitation and competency in self-care and disease management postsurgery. Conventional strategies to meet perioperative needs have not been pragmatic, and there remains a pressing need for novel technologies that could improve health outcomes. Objective: The aim of this paper was to describe the development of a smartphone-based interactive CRC self-management enhancement psychosocial program (iCanManage) in order to improve health outcomes among patients who undergo elective CRC surgeries and their family caregivers. Methods: A multidisciplinary international team comprising physicians, specialist nurses, a psychologist, software engineers, academic researchers, cancer survivors, patient ambassadors, and ostomy care medical equipment suppliers was formed to facilitate the development of this patient-centric digital solution. The process occurred in several stages: (1) review of current practice through clinic visits and on-site observations; (2) review of literature and findings from preliminary studies; (3) content development grounded in an underpinning theory; (4) integration of support services; and (5) optimizing user experience through improving interface aesthetics and customization. In our study, 5 participants with CRC performed preliminary assessments on the quality of the developed solution using the 20-item user version of the Mobile App Rating Scale (uMARS), which had good psychometric properties. Results: Based on the collected uMARS data, the smartphone app was rated highly for functionality, aesthetics, information quality, and perceived impact, and moderately for engagement and subjective quality. Several limiting factors such as poor agility in the adoption of digital technology and low eHealth literacy were identified despite efforts to promote engagement and ensure ease of use of the mobile app. To overcome such barriers, additional app-training sessions, an instruction manual, and regular telephone calls will be incorporated into the iCanManage program during the trial period. Conclusions: This form of multidisciplinary collaboration is advantageous as it can potentially streamline existing care paths and allow the delivery of more holistic care to the CRC population during the perioperative period. Should the program be found to be effective and sustainable, hospitals adopting this digital solution may achieve better resource allocation and reduce overall health care costs in the long run.
Background: Informal carers of persons with dementia often resort to social media to alleviate their sense of social isolation and cultivate their platform to share their experience in care. Methods: The present study performed a preliminary analysis on how TikTok creators share their personal experience caring for a loved one with dementia through content shared under the hashtag #dementiacaregiver. We performed a systemic review and inductive thematic analysis of 447 TikTok posts. Findings: The content under #dementiacaregiver was interpreted to form five primary themes: (1) realities of caregiving, (2) a little levity, (3) advice for caring, (4) engagement with viewers, and (5) sensory stimulation. Conclusions: TikTok seems to have provided carers with a tool for artistic and social expression that fostered a sense of community and a place for remote belonging.
Objectives: This study examines WeChat use among family caregivers of persons living with schizophrenia (PLS), its socio-demographic correlates and relationship to caregiving experiences, including perceived stress, stigma, coping, social support, family functioning, and caregiving rewarding feelings. Methods: A cross-sectional study was conducted with 449 family caregivers of PLS. Face-to-face interviews were conducted to collect information on socio-demographics, WeChat use, and a range of caregiving experiences. Results: The results indicated that nearly half (46.8%) of caregivers were WeChat users. WeChat use was associated with higher education (OR = 3.34–9.88, 95% CI : 2.01, 24.77), and younger age (OR = 0.94, 95% CI : 0.92, 0.97). Compared to non-users, WeChat users reported less stigma (b = −1.84, 95% CI : −3.40, −0.28), higher social support (b = 6.62, 95% CI : 2.73, 10.50), better family functioning (b = 1.08, 95% CI : 0.38,1.78), and more caregiving rewarding feelings (b = 3.93, 95% CI : 2.01, 5.85). WeChat use among caregivers of PLS was lower than that found in the general population, which warrants specific attention to this group with alternative support and resources provided to them. Conclusions: WeChat use is associated with more favorable caregiving experiences, and thus serves as a promising medium for further health intervention to support family caregivers, and improve their well-being.
Background: Alzheimer’s Disease (AD) impairs the ability to carry out daily activities, reduces independence and quality of life and increases caregiver burden. Our understanding of functional decline has traditionally relied on reports by family and caregivers, which are subjective and vulnerable to recall bias. The Internet of Things (IoT) and wearable sensor technologies promise to provide objective, affordable and reliable means for monitoring and understanding function. However, human factors for its acceptance are relatively unexplored. Objective The Public Involvement (PI) activity presented in this paper aims to capture the preferences, priorities and concerns of people with AD and their caregivers for using monitoring wearables. Their feedback will drive device selection for clinical research, starting with the study of the RADAR-AD project. Method: The PI activity involved the Patient Advisory Board (PAB) of the RADAR-AD project, comprised of people with dementia across Europe and their caregivers. A set of four devices that optimally represent various combinations of aspects and features from the variety of currently available wearables (e.g. weight, size, comfort, battery life, screen types, water-resistance and metrics) was presented and experienced hands-on. Afterwards, sets of cards were used to rate and rank devices and features and freely discuss preferences. Results: Overall, the PAB was willing to accept and incorporate devices into their daily lives. For the presented devices, the aspects most important to them included comfort, convenience and affordability. For devices in general, the features they prioritized were appearance/style, battery life and water resistance, followed by price, having an emergency button and a screen with metrics. The metrics valuable to them included activity levels and heart rate, followed by respiration rate, sleep quality and distance. Some concerns were the potential complexity, forgetting to charge the device, the potential stigma and data privacy. Conclusions: The PI activity explored the preferences, priorities and concerns of the PAB, a group of people with dementia and caregivers across Europe, regarding devices for monitoring function and decline, after a hands-on experience and explanation. They highlighted some expected aspects, metrics and features (e.g., comfort and convenience), but also some less expected (e.g. screen with metrics).
Introduction: The physical, mental and social status of family caregivers and their care demands have been largely overlooked. This fact has been no different during the COVID-19 pandemic. Therefore, home care will need updates for this new pandemic context, prioritizing the provision of personalized guidance for family caregivers. Objective: To minimize the impact on the mental health of family caregivers of people with dementia through the virtual support group for family caregivers. Method: The research was developed from the performance of support groups for family caregivers in dementia in the virtual format. The meetings were weekly, lasting 2 hours and the themes were worked out according to the group's demands. All meetings were recorded, transcribed, and analyzed using thematic content analysis. Results: In the 8 meetings, 10 family caregivers participated and 5 thematic categories were identified: technology; the routine in the COVID-19 pandemic; behavioral changes and their relationship with the caregiver's mental health; the support network as a health marker; and the new way of carrying out meaningful activities. Conclusion: The support group in the virtual format proved to be a powerful tool for accessing information and guidance concerning dementia, about family care and actions aimed at the caregiver's self-care, with an impact on their emotional state and well-being, minimizing the feeling of social isolation during the COVID-19 pandemic.
Background: The acceptability of videoconferencing delivery of yoga interventions in the advanced cancer setting is relatively unexplored. The current report summarizes the challenges and solutions of the transition from an in-person (ie, face-to-face) to a videoconference intervention delivery approach in response to the Coronavirus Disease pandemic. Method: Participants included patient-family caregiver dyads who were enrolled in ongoing yoga trials and 2 certified yoga therapists who delivered the yoga sessions. We summarized their experiences using recordings of the yoga sessions and interventionists’ progress notes. Results: Out of 7 dyads participating in the parent trial, 1 declined the videoconferenced sessions. Participants were between the ages of 55 and 76 and mostly non-Hispanic White (83%). Patients were mainly male (83%), all had stage III or IV cancer and were undergoing radiotherapy. Caregivers were all female. Despite challenges in the areas of technology, location, and setting, instruction and personal connection, the overall acceptability was high among patients, caregivers, and instructors. Through this transition process, solutions to these challenges were found, which are described here. Conclusion: Although in-person interventions are favored by both the study participants and the interventionists, videoconference sessions were deemed acceptable. All participants had the benefit of a previous in-person experience, which was helpful and perhaps necessary for older and advanced cancer patients requiring practice modifications. In a remote setting, the assistance of caregivers seems particularly beneficial to ensure practice safety. ClinicalTrials.gov: NCT03948100; NCT02481349 © 2021 Sage Publications.
Background: Views on advance care planning (ACP) has shifted from a focus solely on treatment decisions at the end-of-life and medically orientated advanced directives to encouraging conversations on personal values and life goals, patient-caregiver communication and decision making, and family preparation. This study will evaluate the potential utility of a video decision support tool (VDST) that models values-based ACP discussions between cancer patients and their nominated caregivers to enable patients and families to achieve shared-decisions when completing ACP’s. Methods: This open-label, parallel-arm, phase II randomised control trial will recruit cancer patient-caregiver dyads across a large health network. Previously used written vignettes will be converted to video vignettes using the recommended methodology. Participants will be ≥18 years and be able to complete questionnaires. Dyads will be randomised in a 1:1 ratio to a usual care (UC) or VDST group. The VDST group will watch a video of several patient-caregiver dyads communicating personal values across different cancer trajectory stages and will receive verbal and written ACP information. The UC group will receive verbal and written ACP information. Patient and caregiver data will be collected individually via an anonymous questionnaire developed for the study, pre and post the UC and VDST intervention. Our primary outcome will be ACP completion rates. Secondarily, we will compare patient-caregiver (i) attitudes towards ACP, (ii) congruence in communication, and (iii) preparation for decision-making. Conclusion: We need to continue to explore innovative ways to engage cancer patients in ACP. This study will be the first VDST study to attempt to integrate values-based conversations into an ACP intervention. This pilot study’s findings will assist with further refinement of the VDST and planning for a future multisite study. Trial registration Australian New Zealand Clinical Trials Registry No: ACTRN12620001035910. Registered 12 October 2020. Retrospectively registered.
Background: To explore family members' perceptions of an electronic communication application, VidaTalk™, their communication experience, and emotional reactions to communication with mechanically ventilated patients in the intensive care units. Methods: Qualitative phase of a mixed-methods study nested within a randomised controlled trial. Family members in the intervention group received the VidaTalk™ app as a communication aid during their intensive care stay. Seven family members participated in 18 semi-structured email interviews after discharge between May and December 2018. Interviews were analysed using qualitative content analysis. Families were recruited in multiple intensive care units located in one university hospital. Communication experience with the VidaTalk™ and emotions while communicating with the patient. Basic qualitative description and constant comparative techniques were used to code and analyse the text using ATLAS_ti (Version 7.5.18). Findings: The VidaTalk™ opened up family-patient communication by allowing clear communication and expanding communication content. Family members felt happy and thankful to communicate with the patient. They also expressed feelings of relief and less frustration and less stress while communicating with the patient. On the other hand, the patient's ability to express their worries or anxiety sometimes made families feel sad or distressed. The VidaTalk™ was helpful for family-patient communication. Conclusions: The VidaTalk™ may help families reduce psychological distress. However, expanded communication with critically ill patients may cause other negative feelings.
Background: Families of young children with autism spectrum disorder (ASD) frequently experience barriers to accessing evidence-based early intervention services. Telemedicine presents an opportunity to increase access to these services, particularly for families in rural and under-resourced areas. The present article describes a brief behavioral intervention and support model for families of young children with concerns for ASD. In the context of the COVID-19 pandemic, this service model shifted to telemedicine-only service delivery, resulting in an opportunity to analyze intervention outcomes from services delivered either via traditional in-person visits, telemedicine-only sessions, or a hybrid model including both in-person and telemedicine sessions. Methods: Data are presented for 115 families with toddlers 16-33 months of age who participated in a six-session behavioral intervention and support service model either in-person, through telemedicine, or through a hybrid service model. This intervention was available for families referred for ASD evaluation through the state Part C early intervention program. Intervention feasibility, fidelity of implementation, child outcomes, and stakeholder satisfaction are compared across service delivery models. Results: Caregivers, behavioral consultants, and Part C early intervention providers reported satisfaction with services, regardless of service delivery model. Caregivers and consultants also reported positive child outcomes. Statistically significant differences emerged for caregiver- and consultant-reported child outcomes in some domains, with stakeholders in the telemedicine-only group reporting slightly less improvement, compared to stakeholders in the in-person-only group. Caregivers and consultants in the telemedicine-only group also provided qualitative feedback on benefits and challenges related to telemedicine services. Conclusions: Both caregivers and behavioral consultants reported positive outcomes following a brief behavioral intervention and support model targeted at families of young children with concern for ASD. Stakeholders reported improvement in child behavior and satisfaction with services across in-person, telemedicine-only, and hybrid models of service delivery. These results suggest that telemedicine presents a promising opportunity for increasing service access. Additional research is needed to continue optimizing the experience of telemedicine-based service delivery for both families and intervention providers.
Objective: Telehealth platforms have potential utility for providing remote access to supportive care to people with brain tumour. This systematic review aimed to evaluate the feasibility, acceptability and efficacy of delivering supportive care via telehealth platforms to adults with primary brain tumour and family caregivers. Methods: A systematic search of PsycINFO, MEDLINE, CINAHL, Embase, Scopus and Cochrane Library was conducted from 1980 to 1st June 2020 to identify eligible studies. Methodological quality was assessed by two independent reviewers. Results: Seventeen articles, reporting on 16 studies, evaluated telephone‐based support (5 studies), videoconferencing (3 studies), web‐based programs and resources (7 studies) or combined use of videoconferencing and web‐based modules (1 study) to deliver supportive care remotely. Caregivers were involved in 31% of interventions. Mean rates of accrual (68%) and adherence (74%) were moderate, whereas acceptability or satisfaction for those completing the interventions was typically high (M satisfied or very satisfied = 81%). Adherence rates were generally higher and clinical gains were more evident for interventions involving real‐time interaction as opposed to self‐guided interventions. Conclusions: Telehealth delivery of supportive care is feasible and acceptable to a high proportion of individuals with primary brain tumour and their caregivers. It is recommended that future research focuses on implementation outcomes, including factors influencing the uptake and sustainability of telehealth platforms in practice.
Background: Many informal caregivers of older adults have limited time because of the number of responsibilities that their caregiving role entails. This population often experiences high levels of burden due to the stressful nature of their work and are vulnerable to developing negative psychological health outcomes. Easily accessible and flexible knowledge interventions are needed to alleviate the burden and stress experienced by this group. Objective: This study aims to evaluate the acceptability of the web-based delivery of the Caregiving Essentials course for informal caregivers of older adults. Both the strengths and limitations of using a web-based platform to provide information and resources were explored to see whether the method of delivery enhanced or hindered the overall course experience for participants. Methods: A mixed methodology of web-based pre- (n=111) and postcourse surveys (n=39) and telephone interviews (n=26) was used to collect both qualitative and quantitative data from participants. Individual interviews were also conducted with key stakeholders (n=6), and a focus group was conducted with nursing students (n=5) who were involved in the project. Results: The web-based delivery of the course provided participants with greater accessibility to the course because it allowed them to work independently through the modules at their own pace wherever and whenever. The discussion boards were also identified as a major strength because of the opportunity for social interaction and the sense of community that many felt through sharing their experiences. Some barriers to participation included age-related factors, issues with navigating aspects of the course, and concerns about privacy and anonymity. Some key suggestions included more engaging methods of web-based communication and the reorganization of the module content to reduce the amount of text and streamline information. Conclusions: The web-based delivery of Caregiving Essentials appeared to enhance the overall course experience by increasing accessibility and allowing participants to interact with the learning materials and other caregivers. The findings from this evaluation can be used to create and improve the web-based delivery of both the current and emerging interventions for caregivers.
Aims: We aim to establish the feasibility and acceptability of the Tele‐STELLA (Support via Telehealth: Living and Learning with Advancing Alzheimer's Disease and Related Dementias) intervention. We will also assess the efficacy of the intervention in reducing the frequency of behavioural symptoms of dementia as well as family Care Partner reactivity to the symptoms. Design: This is a multi‐component, quasi‐experimental study that focuses on facilitating effective management of behavioural symptoms that occur in the later stages of dementia. Methods: Family Care Partners (n = 124) for persons with Alzheimer's disease will participate in two 8‐week videoconferencing components that address behavioural symptoms—in both the persons with Alzheimer's disease and their Care Partners. In the first component ('Nova'), Care Partners work with one nurse for an hour/week for 4 weeks, then they join a small group for another 4 weeks. In the second component ('Constellation'), Care Partners work in a larger group to hone skills and knit supportive relationships. Behavioural symptom frequency and Care Partner reactivity to the behaviours will be measured prior to, during and after the intervention. The study is funded by the United States National Institute on Aging (R01AG067546); funding was initiated as on February, 2021. Discussion: Tele‐STELLA fills a gap in current videoconference‐based psychoeducational interventions in that it offers real‐time interaction with nurses and peers. The intervention was designed with feedback by pilot participants. This study will assess Tele‐STELLA in its current, novel format; thus, preparing it for a larger, future randomized controlled trial. Impact: Tele‐STELLA addresses symptoms that occur in the later stages of dementia, providing families with tools to facilitate effective behavioural management. Because Tele‐STELLA is implemented via videoconferencing, it targets Care Partners who face barriers to support, such as cost and transportation. Trial Registration: This trial is registered with ClinicalTrials.gov (#NCT04627662).
Objective: The purpose of this study was to provide an in-depth analysis of the components and outcomes of telehealth interventions for family caregivers of individuals with chronic health conditions. Methods: A systematic review of 17 databases was conducted for randomized controlled trials published between January 2002 and January 2017. Interventions were analyzed based on type of telecommunication modality, caregiver and care recipient characteristics, intervention components, and caregiver outcomes. Results: A total of 57 articles met criteria for inclusion. Telephone was the most frequently used mode of telehealth delivery and focused primarily on caregivers of older adults with dementia and stroke. Skills training was the most prevalent treatment strategy across telephone, web, and combined telephone and web modalities. Improved psychological functioning was reported most frequently across telehealth modalities. Conclusion: Telehealth is an effective tool in delivering caregiver interventions and leads to significant improvement in caregiver outcomes. Telephone was used most often to deliver cognitive-behavioral and psychoeducational strategies as compared to web and combined telephone and web modalities. Further research is needed to examine the effects of telehealth interventions on caregiving skills and self-efficacy, as well as health outcomes.
Background: Palliative care was once believed to be too high-touch to be delivered via telehealth. However, numerous studies have demonstrated the positive effects of palliative care delivered through telehealth. Because the COVID-19 pandemic has quickly shifted how health care is delivered to patients with cancer, particularly because of their immunocompromised status and the risks associated with unnecessary exposures in the clinic, previous lessons from palliative care research studies can be used to inform practice. Methods: This article presents a case study that illustrates evidence and best practices for continuing to deliver palliative care via telehealth after COVID-19 restrictions are lifted.
Background: Family-centered practices that involve direct participation of caregivers as part of intervention is critical to effective early intervention. However, regularly scheduled, in person service delivery is not always possible in remote communities, prompting a need for adaptations to the delivery of services, such as the use of live video conferencing to coach caregivers in strategies to promote their children's development. Methods: In this study, caregivers and their children ages 2–9 with autism who were living in rural and remote Canadian communities were included. A concurrent multiple baseline design across participants was applied to examine the effects of live video conference caregiver coaching on children's time jointly engaged with caregivers and caregivers' intervention strategy implementation. Results: Results indicated that all children demonstrated greater time jointly engaged and caregivers demonstrated greater use of strategies in comparison to baseline. Conclusions: The results of this study offer preliminary evidence of the effectiveness of real time video conference coaching for caregivers engaging their children with ASD in play.
Background: Informal caregivers of patients with Alzheimer’s disease and related dementias (ADRD) manage a complex spectrum of patient behavioral and psychological symptoms of dementia (BPSD). Mobile health information technologies have quickly become sources for modern social support and chronic disease management. These technologies can improve our understanding of how to care for patients with ADRD and their informal caregivers. A mobile telehealth intervention could help reduce caregiver burden and BPSD. Methods: This is a pilot randomized controlled trial of 60 dyads of patients living with ADRD and their caregivers, to test the feasibility and estimate the potential effect of the Brain CareNotes (BCN) mobile telehealth system. Participants will be recruited from two health systems. Participants will be randomly assigned to either the BCN intervention arm or usual care comparator. Data will be collected at baseline, 3- and 6-month follow-up. The primary objectives of this trial are to assess feasibility outcomes: (a) recruitment rate, (b) data completion, (c) BCN usability, (d) BCN acceptance, and (e) BCN use and assessed either on an ongoing basis or at 3- and 6-month post-intervention. A secondary objective was to estimate the intervention’s effects on caregiver burden and patient BPSD outcomes at 3 and 6 months, assessed by the Neuropsychiatric Inventory. Discussion: The study will assess the intervention feasibility and potential effect size of the BCN telehealth system as a potentially scalable and lower-cost solution for addressing the ADRD public health crisis. Trial registration Clinical Trials. NCT03119259. Registered on April 18, 2017.
Objectives: This article proposes an intervention from the field of social sciences to improve the knowledge of informal caregivers about care for the elderly. Methods: We analyze the social and cultural relationships that support the informal care culture in Spain. Some of the most important factors that are an obstacle to the professionalization of the sector are presented. Findings: The profiles of the informal caregivers are established, highlighting that most of them are women, whether they are family members or not. Furthermore, we find a prominent role of immigrant women in the non-professional care sector. We also analyzed the different relationships that groups related to informal care of the elderly have with technologies, highlighting mobile phones and instant messaging applications. Conclusions: With this result, we proposed the public policies of care for the elderly to contemplate training actions transmitted through the mobile phone and messaging applications.
Background: When caregivers cannot attend the clinic visit for the person they provide care for, patients are the predominant source of clinic visit information; however, poor patient recall inhibits the quality of information shared, resulting in poor caregiver preparedness and contributing to caregiver morbidity. Technological solutions exist to sharing clinic visit information, but their effectiveness is unclear. Objectives: To assess if and how technology is being used to connect informal caregivers to patient clinic visit information when they cannot otherwise attend, and its impact on caregiver and patient outcomes. Methods: Evidence review MEDLINE, Cochrane, Scopus, and CINAHL were searched through 5/3/2020 with no language restrictions or limits. ClinicalTrials.gov and other reference lists were included in the search. Randomized controlled trials (RCTs) and nonrandomized trials that involved using a technological medium e.g., video or the electronic health record, to communicate visit information to a non-attending caregiver were included. Data were collected and screened using a standardized data collection form. Cochrane’s Risk of Bias 2.0 and the Newcastle-Ottawa Scale were used for RCTs and nonrandomized trials, respectively. All data were abstracted by two independent reviewers, with disagreements resolved by a third reviewer. Findings: Of 2115 studies identified in the search, four met criteria for inclusion. Two studies were randomized controlled trials and two were nonrandomized trials. All four studies found positive effects of their intervention on caregiver outcomes of interest, and three out of four studies found statistically significant improvements in key outcomes for caregivers receiving visit information. Improved outcomes included caregiver happiness, caregiver activation, caregiver preparedness, and caregiver confidence in managing patient health. Conclusions and relevance: Our review suggests that using technology to give a caregiver access to clinical visit information could be beneficial to various caregiver outcomes. There is an urgent need to address the lack of research in this area.
Background: In Australia, informal caregivers (family, friends and neighbours) play a crucial role in supporting people with dementia to remain at home. Within the community aged care policy, informal caregivers are acknowledged as assisting with managing care. However, they usually receive very limited dementia care education and training to support them in their role. The World Health Organization (WHO) developed iSupport for Dementia, a comprehensive online dementia education and skill training programme, to address the gap in supporting informal caregivers. Aim: The aim of the study was to identify stakeholders’ perspectives regarding adapting the WHO iSupport for use by informal caregivers of people with dementia in Australia. Methods: An interpretive description study design was used. Data were collected in focus groups with informal caregivers and care staff of dementia and aged care service providers conducted in May–July 2018. A thematic analysis was utilised to analyse data and identify findings. Results: In total, 16 informal caregivers and 20 care staff participated in the study. Five themes were identified. First, informal caregivers perceived iSupport as an opportunity to provide an online one-stop shop to meet their education needs and their needs to manage care services. Second, both informal caregivers and care staff believed that an integrated caregiver network moderated by a health professional was much needed to enable informal caregivers to share learning experiences and enhance social support. Third, both informal caregivers and care staff strongly suggested that dementia and aged care service providers had a role to play in promoting the iSupport. Fourth, informal caregivers were concerned about the time commitment to participate in the iSupport programme. Finally, informal caregivers expected the iSupport to be user-friendly. Conclusion: Stakeholders perceived the adaptation of the WHO iSupport in Australia would strengthen informal caregiver education and optimise support for informal caregivers.
Background: The dementia is a degenerative uncurable disease. Giving its high prevalence worldwide, it is considered a major global public health concern. Patients with dementia need long-term care and support at home. Current evidence demonstrates that their informal caregivers are prone to psychiatric and cardiovascular diseases and lack formal support that can help them in their exhausting daily routine. We intend to report the creation of an ICT solution to support informal caregivers of patients with dementia, addressing identified needs. Methods: The academic engineering project launched was divided in two phases: 1) requirements analysis and software design and 2) software development and deployment. The user-friendly and smooth functioning application developed, called OneCare, has a set of functionalities that allows the free access to information about the disease, useful resources, medication, outpatient consultation management and communication with peers. Discussion: We consider that this application may improve effectiveness in care provided by informal caregivers of patients with dementia, while having a positive impact in their health outcomes and quality of life. We advocate that future policies in this area should consider the use of this kind of technology as a way to reduce disease burden, institutionalization needs and increase the chances of living well at home.
Aim: The aim of this study is to develop a Smarthealth system of monitoring, modelling, and interactive recommendation solutions (for caregivers) for in‐home dementia patient care that focuses on caregiver–patient relationships. Design: This descriptive study employs a single‐group, non‐randomized trial to examine functionality, effectiveness, feasibility, and acceptability of the novel Smarthealth system. Methods: Thirty persons with Alzheimer's Disease or related dementia and their family caregivers (N = 30 dyads) will receive and install Smarthealth technology in their home. There will be a 1‐month observation phase for collecting baseline mood states and a 2‐month implementation phase when caregivers will receive stress management techniques for each detected, negative mood state. Caregivers will report technique implementation and usefulness, sent via Ecological Momentary Assessment system to the study‐provided smartphone. Caregivers will provide daily, self‐reported mood and health ratings. Instruments measuring caregiver assessment of disruptive behaviours and their effect on caregivers; caregiver depressive symptoms, anxiety and stress; caregiver strain; and family functioning will be completed at baseline and 3 months. The study received funding in 2018 and ethics board approval in 2019. Discussion: This study will develop and test novel in‐home technology to improve family caregiving relationships. Results from this study will help develop and improve the Smarthealth recommendation system and determine its usefulness, feasibility, and acceptability for persons with dementia and their family caregiver.ImpactThe Smarthealth technology discussed will provide in‐home stress reduction resources at a time when older adults may be experiencing increasingly high rates of isolation and anxiety and caregiver dyads may be experiencing high levels of relationship strain. Trial Registration: This study was registered with Clinical Trials.gov (Identifier NCT04536701).
Background: Providing care for someone with a disease or chronic condition can have a negative psychological, physical, social, and economic impact upon informal caregivers. Despite the socio-economic relevance and more than three decades of caregiver intervention research only very few translational efforts of successful interventions are reported. Still less of these interventions have been implemented into routine services. Objectives: The aim of the ReDiCare study (German acronym BerTA) is to evaluate the effectiveness of a stepped counselling approach for burdened caregivers delivered by care counsellors of two long-term care insurances and registered psychotherapists. Methods/design: A pragmatic randomised controlled trial with 572 caregivers of older adults (≥ 60 years) receiving benefits of one of the two participating long-term care insurances. Participants are assigned (t0) to either the ReDiCare intervention or a control group receiving routine care and counselling. Data are collected at baseline (-t1), 3-month (t1), 9-month (t2) and 15-month (t3). The 9-month post-intervention assessment (t2) is the primary endpoint to evaluate the results on the primary and secondary outcomes, measured by self-reported questionnaires. Depressive symptoms measured with the CES-D are the primary outcome. The main secondary outcomes are physical complaints, utilization of psychosocial resources, caregiver self-efficacy and burden, positive aspects of caregiving and perceived care quality. A process evaluation, including audio tapes, self-report questionnaires and documentation will be conducted to examine internal and external validity of the intervention. Data on direct and indirect costs are collected for the (health) economic evaluation, using a health care perspective and a societal perspective. Discussion: While comparable previous caregiver interventions have been developed and evaluated for specific caregiver groups (e.g. dementia caregivers, stroke caregivers), the ReDiCare study will indicate whether a stepped approach will be effective also in a broader group of caregivers. The intervention is one of the very few translational studies in caregiver intervention research and will provide valuable insights into relevant factors for training, intervention protocol adherence, effectiveness, and costs for future implementation steps. Trial registration Deutsches Register Klinischer Studien (German Clinical Trials Register), DRKS00014593 (www.drks.de, registered 14 May 2018) and International Clinical Trials Registry Platform, DRKS00014593 (https://apps.who.int/trialsearch/).
Purpose: This paper aims to reports on an academic–industry service development innovation to advance the symptom monitor and track feature within the CogniCare app to support family carers of people living with dementia. Expert opinion from dementia care professionals identified key monitoring strategies for enhanced carer competence and confidence in the early identification of relevant symptoms that would help facilitate meaningful hospital/social care consultations. Design/methodology/approach: A co-production approach between industry and academia included stakeholder representation from NHS Highland and Alzheimer Scotland. Dementia care experts validated items to be included for symptom monitoring and tracking using a newly developed A2BC2D2EF2 framework as part of this project and recommended additional strategies for monitoring symptom change, including carer well-being. Findings: Dementia care experts perceived the symptom monitoring and track feature to have the potential to support family carers with dementia care at home and foster a relationship-centred approach to dementia care to facilitate meaningful hospital/social care consultations. Originality/value: The CogniCare app is the first platform of its kind that aims to support family carers to care for people living with dementia at home. This unique service development collaborative combined dementia and digital expertise to create innovative digital solutions for dementia care. The proposed monitoring and tracking feature is perceived by dementia care experts as a tool with the potential to enhance carer confidence and thus enable safe and effective dementia care within the home environment.
Background: Informal family caregivers constitute an important and increasingly demanding role in the cancer healthcare system. This is especially true for caregivers of patients with primary malignant brain tumors based on the rapid progression of disease, including physical and cognitive debilitation. Informal social network resources such as friends and family can provide social support to caregivers, which lowers caregiver burden and improves overall quality of life. However, barriers to obtaining needed social support exist for caregivers. To address this need, our team developed and is assessing a multi-component caregiver support intervention that uses a blend of technology and personal contact to improve caregiver social support. Methods: We are currently conducting a prospective, longitudinal 2-group randomized controlled trial which compares caregivers who receive the intervention to a wait-list control group. Only caregivers directly receive the intervention, but the patient-caregiver dyads are enrolled so we can assess outcomes in both. The 8-week intervention consists of two components: (1) The electronic Social Network Assessment Program, a web-based tool to visualize existing social support resources and provide a tailored list of additional resources; and (2) Caregiver Navigation, including weekly phone sessions with a Caregiver Navigator to address caregiver social support needs. Outcomes are assessed by questionnaires completed by the caregiver (baseline, 4-week, 8-week) and the cancer patient (baseline, and 8-week). At 8 weeks, caregivers in the wait-list condition may opt into the intervention. Our primary outcome is caregiver well-being; we also explore patient well-being and caregiver and patient health care utilization. Discussion: This protocol describes a study testing a novel social support intervention that pairs a web-based social network visualization tool and resource list (eSNAP) with personalized caregiver navigation. This intervention is responsive to a family-centered model of care and calls for clinical and research priorities focused on informal caregiving research. Trial registration clinicaltrials.gov, Registration number: NCT04268979; Date of registration: February 10, 2020, retrospectively registered.
Background: Persons with multiple sclerosis (pwMS) are often characterized as ideal adopters of new digital healthcare trends, but it is worth thinking about whether and which pwMS will be targeted and served by a particular eHealth service like a patient portal. With our study, we wanted to explore needs and barriers for subgroups of pwMS and their caregivers when interacting with eHealth services in care and daily living. Methods: This study comprises results from two surveys: one collecting data from pwMS and their relatives (as informal caregivers) and another one providing information on the opinions and attitudes of healthcare professionals (HCPs). Data were analyzed descriptively and via generalized linear models. Results: 185 pwMS, 25 informal caregivers, and 24 HCPs in the field of MS participated. Nine out of ten pwMS used information technology on a daily base. Individual impairments like in vision and cognition resulted in individual needs like the desire to actively monitor their disease course or communicate with their physician in person. HCPs reported that a complete medication overview, additional medication information, overview of future visits and a reminder of medication intake would be very helpful eHealth features for pwMS, while they themselves preferred features organizing and enriching future visits. Conclusions: A closer look at the various profiles of eHealth adoption in pwMS and their caregivers indicated that there is a broad and robust enthusiasm across several subgroups that does not exclude anyone in general, but constitutes specific areas of interest. For pwMS, the focus was on eHealth services that connect previously collected information and make them easily accessible and understandable.
Objectives: Families impacted by paediatric cancer are met with logistical, financial and psychological impacts, with severe acute respiratory syndrome coronavirus two creating additional barriers and stressors for these families. Connected Health (CH) may facilitate cancer care. The objective of the present study was to systematically review CH for families/informal caregivers affected by paediatric cancer. Methods: Using search terms relating to: (1) paediatric cancer, (2) family/caregivers and (3) CH, the databases of PsycINFO, Pubmed, EMBASE and Web of Science were searched. Inclusion criteria included an evaluation of CH technologies for supportive care for families/caregivers affected by paediatric cancer at any stage of treatment or survivorship. Results: Sixteen studies met inclusion criteria. CH was primarily web‐based (n = 6), however smartphone applications (n = 5), telehealth (n = 2) and online groups (n = 3) were utilised. Intervention areas included psycho‐social (n = 6), health and information provision (n = 8) and palliative care (n = 2). Conclusions: While limited studies have evaluated the impact of CH on families living with paediatric cancer, emerging evidence suggests potential benefits. More evidenced‐based interventions are required.
The existing interventions for informal caregivers assist with managing health outcomes of the role burden. However, the deeper meaning-making needs of informal caregivers have been generally neglected. This paper reflects on the meaning-making needs of informal caregivers, through the theory of narrative identity, and proposes a new approach – the Transformative Video Design technique delivered via video storytelling. Transformative Video Design assists informal caregivers to re-create a cohesive caregiving story and incorporate it into the narrative identity. The technique is used as a stimulus for triggering the self-re-structure within the narrative identity and facilitating role transformation.
Background: This paper describes a randomized controlled trial on the Online Life Story Book (OLSB), a digital reminiscence intervention for people with (very) mild dementia living at home. Objectives: The aim of the study was to investigate the effectiveness of the OLSB on (i) neuropsychiatric symptoms (NPS) in persons with dementia and (ii) the distress and quality of life (QOL) of primary informal caregivers. Methods: A randomized controlled trial with individual randomization to one of two conditions was conducted: 1) intervention “Online Life Story Book”; 2) wait list control condition. In the intervention OLSB, a trained volunteer guided the participants through the process of creating an OLSB in approximately 5 meetings within a period of 8–10 weeks. Participants in the control condition received care as usual while they waited for 6 months before starting. Outcomes on NPS and distress and QOL of the informal caregiver were assessed at baseline (baseline, T0), 3 months (T1) and 6 months (T2) post baseline. Results: Of the 42 persons with dementia, 23 were female and 19 were male. They had a mean age of 80 years, ranging from 49 to 95. The total drop-out rate was 14.3 percent. Small but insignificant effects on NPS, caregiver distress and QOL of caregivers were found with the exception of self-rated caregiver distress that reduced significantly during the intervention. One reason to explain the results might be that the included participants were in relatively good health. Practical challenges during the intervention could have affected the results as well. It might also be that the intervention caused effects on other outcomes than NPS and caregiver distress. Conclusions: In future research, it is important to study the effects in persons with more complaints and higher distress and to be careful in the selection of outcome variables in relation to the reminiscence functions served by the intervention.
Objectives: The aim of this paper is twofold. Firstly, to investigate the potential benefits of online health communities (OHCs) for informal caregivers by conducting a systematic literature review. Secondly, to identify the relationship between the potential benefits of OHCs and resilience factors of older adults. Methods & Findings: Performing a thematic analysis, we identified the potential benefits of OHCs for informal caregivers of older adults, including two salient themes: (a) caregivers sharing and receiving social support and (b) self and moral empowerment of caregivers. Then, we uncovered how these potential benefits can support resilience of older adults. Our findings show that sharing and receiving of social support by informal caregivers, and self and moral empowerment of informal caregivers in OHCs, can support four resilience factors among older adults, including self‐care, independence, altruism and external connections. Conclusions: This review enables a better understanding of OHCs and Gerontology, and our outcomes also challenge the way healthcare and aged‐care service providers view caregivers and older adults. Furthermore, the identified gap and opportunities would provide avenues for further research in OHCs.
Background: Regaining hand function is the top priority for people with tetraplegia, however access to specialised therapy outwith clinics is limited. Here we present a system for hand therapy based on brain-computer interface (BCI) which uses a consumer grade electroencephalography (EEG) device combined with functional electrical stimulation (FES), and evaluate its usability among occupational therapists (OTs) and people with spinal cord injury (SCI) and their family members. Methods: Users: Eight people with sub-acute SCI (6 M, 2F, age 55.4 ± 15.6) and their caregivers (3 M, 5F, age 45.3 ± 14.3); four OTs (4F, age 42.3 ± 9.8). User Activity: Researchers trained OTs; OTs subsequently taught caregivers to set up the system for the people with SCI to perform hand therapy. Hand therapy consisted of attempted movement (AM) of one hand to lower the power of EEG sensory-motor rhythm in the 8-12 Hz band and thereby activate FES which induced wrist flexion and extension. Technology: Consumer grade wearable EEG, multichannel FES, custom made BCI application. Location: Research space within hospital. Evaluation: donning times, BCI accuracy, BCI and FES parameter repeatability, questionnaires, focus groups and interviews. Results: Effectiveness: The BCI accuracy was 70–90%. Efficiency: Median donning times decreased from 40.5 min for initial session to 27 min during last training session (N = 7), dropping to 14 min on the last self-managed session (N = 3). BCI and FES parameters were stable from session to session. Satisfaction: Mean satisfaction with the system among SCI users and caregivers was 3.68 ± 0.81 (max 5) as measured by QUEST questionnaire. Main facilitators for implementing BCI-FES technology were “seeing hand moving”, “doing something useful for the loved ones”, good level of computer literacy (people with SCI and caregivers), “active engagement in therapy” (OT), while main barriers were technical complexity of setup (all groups) and “lack of clinical evidence” (OT). Conclusion: BCI-FES has potential to be used as at home hand therapy by people with SCI or stroke, provided it is easy to use and support is provided. Transfer of knowledge of operating BCI is possible from researchers to therapists to users and caregivers. Trial registration Registered with NHS GG&C on December 6th 2017; clinicaltrials.gov reference number NCT03257982, url: https://clinicaltrials.gov/ct2/show/NCT03257982.
Background: Asthma is the most common non-communicable disease among children and the prevalence of childhood asthma is increasing in Vietnam. Often, due to the stage of development of the child and the illness, control of asthma in pre-school age children depends on family caregivers. To design effective interventions for asthma control, understanding family caregivers' perceptions of factors that influence such control is necessary. Thus, this cross-sectional study developed and tested a model of how perceived social support, satisfaction with nursing care, access to healthcare and family management work to explain asthma control among pre-school age children. Methods: A convenience sample of 328 primary family caregivers of pre-school age children with asthma from three public hospitals in Da Nang, Vietnam was recruited. Questionnaires used were a demographic form, and Vietnamese versions of the Best Asthma Control Test for Preschoolers, the Modified Social Support Questionnaire, the Access to Healthcare Instrument, and the Patient Satisfaction with Nursing Care Quality Questionnaire. The SPSS version 18 and the AMOS program were used to test the model. Results: Findings revealed that the hypothesized model fitted with the data and explained 38% of the variance in asthma control. Contextual factors had a direct effect on asthma control and an indirect through family management. Family management had a significant direct positive effect on asthma control. Among these factors, perceived social support had the strongest total effect whereas access to health care had the strongest direct effect on asthma control. Conclusion: Nurses can use this finding to strengthening support from significant people to improve family management and strengthen access to health care using various strategies such as telehealth to support asthma control.
Background: Cystic fibrosis (CF) is an inherited chronic condition that requires extensive daily care and quarterly clinic visits with a multidisciplinary care team. The limited exchange of information outside of the quarterly clinic visits impedes optimal disease self-management, patient engagement, and shared decision making. Objective: The aim of this study is to adapt a mobile health (mHealth) app originally developed in Sweden to the needs of patients, families, and health care providers in a CF center in the United States and to test it as a platform for sharing patient-generated health data with the CF health care team. Methods: Focus groups with health care providers of patients with CF, adolescents with CF, and caregivers of children with CF were conducted to determine what modifications were necessary. Focus group data were analyzed using a thematic analysis, and emergent themes were ranked according to desirability and technical feasibility. The mHealth platform was then modified to meet the identified needs and preferences, and the flow of patient-generated health data to a secure Research Electronic Data Capture database was tested. Protocols for data management and clinical follow-up were also developed. Results: A total of 5 focus groups with 21 participants were conducted. Recommended modifications pertained to all functionalities of the mHealth platform, including tracking of symptoms, treatments, and activities of daily care; creating and organizing medication lists and setting up reminders; generating reports for the health care team; language and presentation; sharing and privacy; and settings and accounts. Overall, health care providers recommended changes to align the mHealth platform with US standards of care, people with CF and their caregivers requested more tracking functionalities, and both groups suggested the inclusion of a mental health tracker as well as more detailed response options and precise language. Beta testers of the modified platform reported issues related to translatability to US environment and various bugs. Conclusions: This study demonstrated the importance of identifying the needs and preferences of target users and stakeholders before adopting existing mHealth solutions. All relevant perspectives, including those of clinicians, patients, and caregivers, should be thoroughly considered to meet both end users’ needs and evidence-based practice recommendations.
Background: People with Alzheimer disease and related dementias often display disruptive behaviors (eg, aggression, wandering, and restlessness), which increase family caregivers’ burden of care. However, there are few tools currently available to help these caregivers manage disruptive behaviors. Mobile apps could meet this need, but to date little is known about them. Objective: The aims of our study were to identify existing mobile apps designed to support family caregivers of people with Alzheimer disease and related dementias in managing disruptive behaviors; explore whether family caregivers view these mobile apps as relevant to meeting their needs and as useful in managing disruptive behaviors; and document the types of mobile apps that are of interest and appeal to most family caregivers (with regard to format, ergonomics, and clarity). Methods: A review of mobile apps initially conducted in February 2018 was updated in March 2019 with 2 platforms (App Store [Apple Inc.] and Google Play [Google]). The selected apps were first analyzed independently by 3 raters (2 students and 1 researcher) for each of the platforms. A focus group discussion was then held with 4 family caregivers to explore their perceptions of the apps according to their needs and interests. The content of the discussion was analyzed. Results: Initially, 7 of 118 apps identified met the inclusion criteria. An eighth app, recommended by one of the knowledge users, was added later. Four family caregivers (women aged between 58 and 78 years) participated in the discussion. Participants expressed a preference for easy-to-understand apps that provide concrete intervention strategies. They reported being most inclined to use two apps, Dementia Advisor and DTA Behaviours. Conclusions: Few mobile apps on the market meet the needs of family caregivers in terms of content and usability. Our results could help to address this gap by identifying what family caregivers deem relevant in a mobile app to help them manage disruptive behaviors.
Background: Past trauma and exposure to violence have been related to poor emotion regulation and household violence, which can have persistent mental health effects across generations. The Family Strengthening Intervention for Early Childhood Development (FSI-ECD/called Sugira Muryango in Rwanda) is an evidence-based behavioral home-visiting intervention to promote caregiver mental health, positive parenting practices, and early childhood development among families facing adversity. In Sierra Leone and other lower- and middle-income countries, mobile health (mHealth) technology has the potential to improve health care delivery and health outcomes. Objective: This study aims to (1) apply a user-centered design to develop and test mHealth tools to improve supervision and fidelity monitoring of community health workers (CHWs) delivering the FSI-ECD and (2) conduct a pilot randomized controlled trial of the FSI-ECD to assess feasibility, acceptability, and preliminary effects on caregiver mental health, emotion regulation, caregiving behaviors, and family violence in high-risk families with children aged 6-36 months in comparison with control families receiving standard care. Methods: We will recruit and enroll CHWs, supervisors, and families with a child aged 6-36 months from community health clinics in Sierra Leone. CHWs and supervisors will participate in 1 problem analysis focus group and 2 user interface/user experience cycles to provide feedback on mHealth tool prototypes. Families will be randomized to mHealth-supported FSI-ECD or standard maternal and child health services. We will collect quantitative data on caregiver mental health, emotion regulation, caregiving behaviors, and family functioning at baseline, postintervention, and 3-month follow up. We will use a mixed methods approach to explore feasibility and acceptability of mHealth tools and the FSI-ECD. Mixed effects linear modeling will assess FSI-ECD effects on caregiver outcomes. Cost-effectiveness analysis will estimate costs across FSI-ECD versus standard care. Results: Funding for this study was received from the National Institutes of Mental Health on August 17, 2020. Institutional Review Board approval was received on September 4, 2020. Data collection is projected to begin on December 15, 2020. Conclusions: This study will provide important data on the feasibility, acceptability, and preliminary efficacy of mHealth-supported delivery of an evidence-based family home-visiting intervention in a postconflict LMIC. Trial Registration: ClinicalTrials.gov NCT04481399; https://clinicaltrials.gov/ct2/show/NCT04481399. International Registered Report Identifier (IRRID): PRR1-10.2196/25443
Objectives: Children with medical complexity (CMC) are commonly assisted by medical devices, which family caregivers are responsible for managing and troubleshooting in the home. Optimizing device use by maximizing the benefits and minimizing the complications is a critical goal for CMC but is relatively unexplored. In this study, we sought to identify and describe workarounds families have developed to optimize medical device use for their needs. Methods: We conducted 30 contextual inquiry interviews with families of CMC in homes. Interviews were recorded, transcribed, and analyzed for barriers and workarounds specific to medical device usage through a directed content analysis. We used observation notes and photographs to confirm and elaborate on interview findings. Results: We identified 4 barriers to using medical devices in the home: (1) the quantity and type of devices allotted do not meet family needs, (2) the device is not designed to be used in locations families require, (3) device use is physically or organizationally disruptive to the home, and (4) the device is not designed to fit the user. We also identified 11 categories of workarounds to the barriers. Conclusions: Families face many barriers in using medical devices to care for CMC. Our findings offer rich narrative and photographic data revealing the ways in which caregivers work around these barriers. Future researchers should explore the downstream effects of these ubiquitous, necessary workarounds on CMC outcomes toward developing interventions that optimize device use for families.
Background: Long-term outcomes are of particular importance in evaluating interventions for family caregivers of people with dementia (PwD). So far, evidence for long-term effects (>6 months postintervention) is limited to four interventions. Objective: We examined the long-term effects of Tele.TAnDem, a telephone-based cognitive-behavioral therapy (CBT) intervention, on a variety of outcomes at 3-year follow-up, the longest follow-up of any intervention study for caregivers of PwD (without continuous support). Methods: Caregivers of PwD were randomly assigned to receive Tele.TAnDem consisting of 12 sessions over 6 months (intervention group [IG]) or usual care (control group [CG]). At 3-year follow-up (i.e., 2.5 years postintervention), 29 caregivers in the IG and 22 caregivers in the CG were still caring at home for a PwD. Results: Caregivers in the IG reported significantly lower caregiver burden and higher quality of life regarding social relationships. Conclusions: Tele.TAnDem is successful in buffering detrimental effects of caregiving on caregiver burden and social relationships in the long term. The small- to medium-sized effects lie in the range of effect sizes reported in the few previous investigations. The findings add to the scant evidence that interventions yielding long-term outcomes have to date mostly been multicomponent interventions based on CBT principles with structured techniques and at least seven sessions over more than 2 months.
Background: Individuals with heart failure (HF) typically live in the community and are cared for at home by family caregivers. These caregivers often lack supportive services and the time to access those services when available. Technology can play a role in conveniently bringing needed support to these caregivers. Objectives: The purpose of this article is to describe the implementation of a virtual health coaching intervention with caregivers of HF patients (“Virtual Caregiver Coach for You”—ViCCY). Methods: A randomized controlled trial is currently in progress to test the efficacy of the intervention to improve self‐care. In this trial, 250 caregivers will be randomly assigned to receive health information via a tablet computer (hereafter, tablet) plus 10 live health coaching sessions delivered virtually (intervention group; n = 125) or health information via a tablet only (control group; n = 125). Each tablet has specific health information websites preloaded. To inform others embarking on similar technology projects, here we highlight the technology challenges encountered with the first 15 caregivers who received the ViCCY intervention and the solutions used to overcome those challenges. Results: Several adaptations to the implementation of ViCCY were needed to address hardware, software, and network connectivity challenges. Even with a well‐designed research implementation plan, it is important to re‐examine strategies at every step to solve implementation barriers and maximize fidelity to the intervention. Conclusion: Researcher and interventionist flexibility in adapting to new strategies is essential when implementing a technology‐based virtual health coaching intervention.
Objective: The objective was to explore family caregivers' perspectives of the recovery process of older adults with hip fracture and describe experiences from caregivers who: (1) used the online intervention, or (2) received home-based care provided by the Andalusian Public Health Care System. Methods: This was an exploratory secondary study with informal family caregivers who had an older adult family member with hip fracture enrolled in a novel telerehabilitation (telerehab) clinical trial. Forty-four caregivers of older adults with hip fracture were interviewed at 6 to 9 months after their family member's hip fracture. Results: Caregivers shared concerns of family members' survival and recovery; they recounted increased stress and anxiety due to the uncertainty of new tasks associated with providing care and the impact on their lifestyle. Although most caregivers were satisfied with the health care received, they made suggestions for better organization of hospital discharge and requests for home support. The main reasons why caregivers and their family member chose the telerehab program were to enhance recovery after fracture, gain knowledge for managing at home, and because of the convenience of completing the exercises at home. There were more family caregivers in the control group who expressed a high level of stress and anxiety, and they also requested more social and health services compared with caregivers whose family member received telerehab. Conclusion: Family caregivers are an essential component of recovery after hip fracture by providing emotional and physical support. However, future clinical interventions should evaluate person-centered interventions to mitigate possible stress and anxiety experienced by family caregivers. Impact Family caregivers' perspectives are necessary in the co-design of management strategies for older adults after hip fracture.
Background: Caregiving for a family member can result in reduced well-being for the caregiver. Internet-delivered cognitive behavioral therapy (ICBT) may be one way to support this population. This is especially the case for caregivers in countries with limited resources, but high demand for psychological services. Objective: In this study we evaluated the effects of a therapist-guided 8-week-long ICBT intervention for informal caregivers. Methods: In total, 63 participants were recruited online and randomized either to the intervention or to the wait-list control group. The main study outcome was the Caregiver Burden Inventory (CBI). Secondary outcomes included measures of caregiver depression, anxiety, stress, and quality of life. Results: Moderate between-group effect sizes were observed for the CBI measure, in favor of the intervention group, with a Cohen d=–0.70 for the intention-to-treat analysis. Analyses of the subscales of the CBI showed significant reductions on the subscales of Development and Physical Health. Moderate reductions were found for depression and anxiety scores as indicated by the Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7) scores. Large between-group effects were observed for reduction in stress and increase in quality of life as indicated by the Perceived Stress Scale-14 (PSS-14), The Brunnsviken Brief Quality of Life Scale (BBQ), and The World Health Organization-Five Well-Being Index (WHO-5). In addition, participants experienced little to no difficulty in using the program and were mostly satisfied with the intervention’s platform and the choice of content. Conclusions: This is the first internet intervention study for informal caregivers in Lithuania. The results suggest that therapist-guided ICBT can be effective in reducing caregiver burden, anxiety, depression, stress, and improving quality of life. Trial Registration: ClinicalTrials.gov NCT04052724; https://clinicaltrials.gov/ct2/show/NCT04052724
Background: Web-based interventions have shown promise for chronic disease management but have not been widely applied to populations with stroke. Existing barriers may inhibit the adoption of web-based interventions among stroke survivors and necessitate the involvement of informal caregivers. However, limited information is available on internet accessibility and usability among stroke survivors and their caregivers. Objective: This study aims to investigate internet access and usage in a cohort of stroke survivors and their caregivers. Methods: A cross-sectional survey was conducted with 375 participants (248 stroke survivors and 127 caregivers). Descriptive statistics were generated using cross-tabulation. Comparisons with categorical data were conducted using the chi-square test, whereas the Mann-Whitney U test was used for comparisons involving ordinal variables. Results: Overall, 86.1% (323/375) of the participants reported having internet access. Caregivers were more likely than stroke survivors to access the internet (N=375, χ21=18.5, P<.001) and used text messaging (n=321, χ21=14.7, P<.001). Stroke survivors and caregivers with internet access were younger than stroke survivors and caregivers without internet access. The highest number of participants who reported internet access were non-Hispanic White. Smartphones were the most common devices used to access the internet. Email was the most common type of internet usage reported. Patients who survived for >12 months after a stroke reported higher internet access than those who survived <3 months (P<.001). The number of hours per week spent using the internet was higher for caregivers than for stroke survivors (P<.001). Conclusions: Future feasibility and acceptability studies should consider the role of the informal caregiver, participant age, race and ethnicity, the use of smartphone apps, email and text correspondence, and the amount of time elapsed since the stroke event in the design and implementation of web-based interventions for populations with stroke.
Background: Advance care planning (ACP) enables persons to identify preferences for future treatment and care, and to discuss, record and review these preferences. However, the uptake of ACP among patients with chronic diseases is relatively low. Web-based ACP programs can support patients and their relatives in ACP. However, information needs of patients and their relatives for ACP are unknown. The aim of this study is to explore information needs of patients with chronic disease and their relatives for web-based ACP. Methods: We conducted semi-structured interviews with patients with chronic diseases and relatives at their home or at the study center. In three cases, the patient and relative were paired since they preferred to be interviewed together. We asked about information they would search for when to start with ACP, where they would search for information, what search terms they would use on the Internet, and what content and information they would consider important on an ACP website. The interviewer asked participants to clarify their responses during the interview. We used thematic analysis to analyze the interviewees' responses. Results: We interviewed nine patients with different chronic diseases including amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), chronic obstructive pulmonary disease (COPD) and kidney diseases, and seven relatives, namely partners or (adult) children. The interviewees were aged 24 to 80 years, nine were female and seven were male. Both patients with a chronic disease and relatives mentioned comparable information needs. Many interviewees indicated they would use the Internet to search for information about ACP. Mentioned search terms were "advance care planning", "treatment plan", "disease trajectory" and names of patient associations. Information needs concerned their disease trajectory and quality of life, medical treatment decisions, practical support in arranging care, the concept of ACP and guidance in ACP, communication of treatment and care preferences, peer support of others with chronic diseases, and information for relatives. Many appreciated encouragement of their healthcare providers to take a pro-active role in ACP. Conclusions: We conclude that information needs for ACP included guidance in ACP, support in making decisions about medical treatment, and practical support in arranging care. We recommend adapting web-based ACP information to the information needs of patients and their relatives to increase its findability, uptake and usefulness.
Objectives: The aim of this assessment was to determine the information needs, resources, and resource preferences and self/family-management challenges of parents caring for a child with asthma in China. The acceptance of asthma and consolidated framework for implementation research guided the study. Methods: A cross-sectional, descriptive design was used. Seventy-one parents of a child receiving care in an outpatient respiratory clinic completed a three-part, pragmatic, self-report survey. Quantitative data were analyzed using descriptive statistics and qualitative data using thematic analysis. Findings: Parents, who needed more knowledge about asthma, sought information from internet sources. However, most parents preferred receiving information during in-person consultation with trained specialists. Management challenges revolved around understanding asthma information, formulating beliefs about asthma, experiencing distressing thoughts and feelings, forming supportive networks, and meeting their child's emotional needs. Conclusion: Evidence supports expanding nursing roles in China to include extended time for initial in-person parental interactions and follow-up using reliable clinic-based internet counseling.
Background: There is a need for more resources to support the cognition and quality of life of people with dementia. The individual cognitive stimulation therapy (iCST) app aims to provide cognitive stimulation and social interaction to people with dementia and carers through interactive touchscreen technology. The iCST app has been developed according to the principles of CST and iCST, which have previously shown to improve the cognition and quality of life of people with dementia and benefit the relationship between the person with dementia and his/her carer. The iCST app has also shown to improve the quality of the carer’s life. Objective: The aim of this study is to evaluate the usability of the iCST app intervention and the feasibility of conducting a full-scale randomized controlled trial (RCT) to assess the clinical effectiveness of the iCST app intervention compared to that of treatment-as-usual for people with mild-to-moderate dementia. Methods: We aim to recruit 60 people with mild-to-moderate dementia and their informal carers as dyads in a multi-center feasibility RCT with a treatment-as-usual control group. Both parties must be able to provide informed consent and participate in the intervention. Dyads will complete a baseline assessment that will include cognition and quality of life measures and they will subsequently be randomized (1:1) to the iCST app intervention in addition to usual care or to usual care only. All participants will be followed up at 5 weeks and at 11 weeks after the baseline assessments. A range of feasibility outcomes will be assessed, including recruitment and retention rates, intervention fidelity and usability, and acceptability of the outcome measures. A sample of the experimental group will be invited to a semistructured posttrial interview to further examine the experience of using the iCST app. Results: This study received funding in May 2015 and obtained ethical approval in March 2018. Data collection began in November 2018 and was completed in March 2020 with a total of 61 dyads recruited. Data analyses are in progress and the final results are expected to be available in the spring of 2021. Conclusions: This study will investigate whether it is feasible to conduct a full-scale RCT to evaluate the clinical effectiveness of the iCST app in comparison to that of usual care alone. In addition, this study will examine the usability of the iCST app. The data will provide information on potential modifications to be made to the intervention, study design, and study process. Trial Registration: ClinicalTrials.gov NCT03282877; https://clinicaltrials.gov/ct2/show/NCT03282877 International Registered Report Identifier (IRRID): DERR1-10.2196/24628
Background: Although web-based psychoeducational programs may be an efficient, accessible, and scalable option for improving participant well-being, they seldom are sustained beyond trial publication. Implementation evaluations may help optimize program uptake, but few are performed. When the US Department of Veterans Affairs (VA) launched the web-based psychoeducational workshop Building Better Caregivers (BBC) for informal caregivers of veterans nationwide in 2013, the workshop did not enroll as many caregivers as anticipated. Objective: This study aims to identify the strengths and weaknesses of initial implementation, strategies likely to improve workshop uptake, whether the VA adopted these strategies, and whether workshop enrollment changed. Methods: We used mixed methods and the Promoting Action on Research Implementation in Health Services (PARIHS) implementation evaluation framework. In stage 1, we conducted semistructured interviews with caregivers, local staff, and regional and national VA leaders and surveys with caregivers and staff. We collected and analyzed survey and interview data concurrently and integrated the results to identify implementation strengths and weaknesses, and strategies likely to improve workshop uptake. In stage 2, we reinterviewed national leaders to determine whether the VA adopted recommended strategies and used national data to determine whether workshop enrollment changed over time. Results: A total of 54 caregivers (n=32, 59%), staff (n=13, 24%), and regional (n=5, 9%) and national (n=4, 7%) leaders were interviewed. Findings: We received survey responses from 72% (23/32) of caregivers and 77% (10/13) of local staff. In stage 1, survey and interview results were consistent across multiple PARIHS constructs. Although participants from low-enrollment centers reported fewer implementation strengths and more weaknesses, qualitative themes were consistent across high- and low-enrollment centers, and across caregiver, staff, and leadership respondent groups. Identified strengths included belief in a positive workshop impact and the use of some successful outreach approaches. Implementation weaknesses included missed opportunities to improve outreach and to better support local staff. From these, we identified and recommended new and enhanced implementation strategies—increased investment in outreach and marketing capabilities; tailoring outreach strategies to multiple stakeholder groups; use of campaigns that are personal, repeated, and detailed, and have diverse delivery options; recurrent training and mentoring for new staff; and comprehensive data management and reporting capabilities. In stage 2, we determined that the VA had adopted several of these strategies in 2016. In the 3 years before and after adoption, cumulative BBC enrollment increased from 2139 (2013-2015) to 4030 (2016-2018) caregivers. Conclusions: This study expands the limited implementation science literature on best practices to use when implementing web-based psychoeducational programs. We found that robust outreach and marketing strategies and support for local staff were critical to the implementation success of the BBC workshop. Other health systems may want to deploy these strategies when implementing their web-based programs.
Background: Caring for a person with dementia burdens family caregivers, and there is a close negative relationship between this burden and their quality of life (QoL). Research suggests that caregivers’ main needs are information and training about the disease and support from others experiencing the same situation, and Internet interventions hold considerable promise for meeting these needs. Virtual communities of practice (VCoPs) are Internet frameworks to share knowledge where members collaborate and achieve a sense of trust in the community. Objectives: This paper seeks to evaluate the impact of participating in a VCoP (developed through an App) on the QoL of caregivers to people with Alzheimer’s. Results: Results show QoL before and after the intervention changed significantly. The impact of VCoP on caregivers’ overall QoL is moderated by age and relation with the person with Alzheimer’s, specifically those over 65, and spouses. VCoPs allow interaction and knowledge sharing among caregivers which provide them mainly with information and support from peers helping them to meet their needs. Furthermore, caregivers’ QoL did not decrease when their relative deteriorated functionally, which could be due to the participation in VCoP. Although we found significant pre- and post differences in caregivers’ health literacy, we must report the ambiguous result that this variable only impacts on QoL’s physical domain. Participants also reported that they had a positive experience because the App was perceived to be a useful tool, because they could manage their own participation and they met peers and felt less lonely. Conclusions: Results suggest that participation in a VCoP impacts positively on caregivers’ QoL.
Background: Public involvement in research to improve data quality and to empower different stakeholders is good scientific practice, but rarely implemented across all research phases. Objective: This article reports on an attempt to involve members of a self‐help group for relatives of people living with dementia as co‐researchers in the data analysis in a short‐term format. Methods: One researcher identified statements about assistive technologies from 17 interviews with people living with dementia and informal caregivers. Two researchers and six co‐researchers independently assigned pre‐defined values to these statements. Subsequently, we compared the values of the researchers and co‐researchers. Results: The members of the self‐help group identified four original values not considered by the researchers: consent, inclusion, participation and respect. Discussion: The involvement of co‐researchers led to an improvement in the depth of data quality through the joint identification of values concerning assistive technology. Language barriers between researchers, co‐researchers and interview participants impeded the data analysis. Conclusion: The challenges and benefits of a participatory data analysis shown here can provide a basis for recommendations for target group‐specific research involvement. Our recommendations relate to the recruitment of co‐researchers, requirements for conducting a participatory data analysis and the participation degree of people involved. Patient or Public Contribution: The group of co‐researchers participating in the data analysis consisted of relatives of people living with dementia.
Background: Informal caregivers represent an important and vulnerable part of the society. They can experience negative psychological symptoms, such as depression and anxiety. Internet-based cognitive behavioural therapy (ICBT) is a promising psychological support option that could be effective in reducing informal caregiver burden as well as improving psychological well-being. Qualitative studies are valuable for gaining insights into participant experiences of using ICBT. Objective: The main aim of this study was to explore informal caregiver experiences and hence acceptability and feasibility of the transdiagnostic ICBT program aimed at reducing informal caregiver burden and increasing the quality of life. Methods: Following a strategic sampling procedure, 23 informal caregivers were recruited from previous randomized controlled trial for informal caregivers in Lithuania. Participants were interviewed over phone, using semi-structured interview questions. Interviews were analysed using a thematic analysis approach. Results: Four themes and a total of 10 sub-themes were generated: I A program as a means of change (Convenience and applicability of the format and materials; Ability to focus on own needs; Opportunity for communication), II Suggestions for the program (Including live support; Tailoring materials and format; Providing with more time and resources), III Driving personal and situational forces (Developing acceptance and adjustment over time; Being proactive and/or receiving support) and Hindering situational factors (Deterioration and unpredictability of the care-receivers health; Lacking external support and opportunities for respite). Conclusions: Most of the informal caregivers were found to be satisfied with the program's format and materials as well as the communication with the therapist via a message function in the program. Some suggestions were made regarding implementation of the live support option. Also, suggestions regarding possibility for tailoring the program's content. Lastly, several personal and situational factors were identified as important in affecting informal caregiver well-being. We conclude that ICBT has potential in reducing informal caregiver burden and improving psychological health. Further research trials are warranted for evaluating both, the effectiveness and the feasibility of the program.
Background: Informal family caregivers play a crucial role in cancer care. Effective caregiver involvement in cancer care can improve both patient and caregiver outcomes. Despite this, interventions improving the caregiver involvement are sparse. This protocol describes a randomised controlled trial evaluating the combined effectiveness of novel online caregiver communication education modules for: (1) oncology clinicians (eTRIO) and (2) patients with cancer and caregivers (eTRIO-pc). Methods and analysis: Thirty medical/radiation/surgical oncology or haematology doctors and nurses will be randomly allocated to either intervention (eTRIO) or control (an Australian State Government Health website on caregivers) education conditions. Following completion of education, each clinician will recruit nine patient–caregiver pairs, who will be allocated to the same condition as their recruiting clinician. Eligibility includes any new adult patient diagnosed with any type/stage cancer attending consultations with a caregiver. Approximately 270 patient–caregiver pairs will be recruited. The primary outcome is caregiver self-efficacy in triadic (clinician–patient–caregiver) communication. Patient and clinician self-efficacy in triadic communication are secondary outcomes. Additional secondary outcomes for clinicians include preferences for caregiver involvement, perceived module usability/acceptability, analysis of module use, satisfaction with the module, knowledge of strategies and feedback interviews. Secondary outcomes for caregivers and patients include preferences for caregiver involvement, satisfaction with clinician communication, distress, quality of life, healthcare expenditure, perceived module usability/acceptability and analysis of module use. A subset of patients and caregivers will complete feedback interviews. Secondary outcomes for caregivers include preparedness for caregiving, patient–caregiver communication and caring experience. Assessments will be conducted at baseline, and 1 week, 12 weeks and 26 weeks post-intervention. Ethics and dissemination: Ethical approval has been received by the Sydney Local Health District Human Research Ethics Committee (REGIS project ID number: 2019/PID09787), with site-specific approval from each recruitment site. Protocol V.7 (dated 1 September 2020) is currently approved and reported in this manuscript. Findings will be disseminated via presentations and peer-reviewed publications. Engagement with clinicians, media, government, consumers and peak cancer groups will facilitate widespread dissemination and long-term availability of the educational modules.Trial registration numberACTRN12619001507178.
Objective: The COVID-19 pandemic has brought about a major upheaval in the lives of older adults and their family/friend caregivers, including those utilizing home care services. In this article, we focus on results from a qualitative component added to a pragmatic randomized controlled trial that focuses on the experiences of our study participants during COVID-19. Methods: A total of 29 participants responded to the COVID-19 related questions focused on their health services experiences and preferences from March-June 2020 including 10 home care clients and 19 family/friend caregivers in the provinces of Ontario and Nova Scotia, Canada. Results: Many participants were affected drastically by the elimination or reduction of access to services, highlighting the vulnerability of home care clients and their caregivers during COVID-19. This took an emotional toll on home care clients and increased the need for family/friend caregiver support. While many participants expressed reduced desire to utilize residential long-term care homes, some caregivers found that passive remote monitoring technology was particularly useful within the COVID-19 context. Conclusions: Our results provide important insights into the ways the older adults and their caregivers have been affected during the COVID-19 context and how to better support them in the future.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
• 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.
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.
• 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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).
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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.)
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.
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.
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.)
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.
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.
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..
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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).
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.;
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.
[...]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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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.
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.
Objective: To assess for the validity of a future trial, the current feasibility study aimed to compare