Skip to content

Toggle service links

You are here

  1. Home
  2. Support and carers
  3. Training and carers

Training and carers

The following resources examine training for carers, and involvement of carers in training of care providers and others.

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

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

Piloting an innovative knowledge translation and exchange (KTE) approach on educational resources for caregivers

BACKGROUND: Knowledge translation and exchange (KTE) is about moving knowledge into practice, involving stakeholders in an ongoing iterative process. The Alzheimer Society of Canada (ASC) approaches KTE by emphasizing ongoing collaborations with our primary audiences: people with lived experience of dementia, healthcare providers, and researchers. Knowing that people have diverse learning styles and preferences for accessing information, ASC is diversifying the range of educational resources that are currently provided through a traditional medium (i.e., printed information sheets) to a multimedia range of KTE tools that can better meet the needs of our audiences. Beginning with a pilot project that explored the practical application of KTE to a key education resource, ASC has developed an operational process with the involvement of stakeholders to help our audiences access and benefit from the information they need in a manner that accommodates them. METHOD: A resource for the KTE pilot project was chosen based on a data driven approach to assess need and impact (i.e., number of website views, downloads, printed resource orders and feedback from stakeholders). Using ASC's KTE framework and the results of an environmental scan that identified KTE approaches used by other organizations, the team operationalized the KTE framework through a focus on four dimensions: 1) audiences, 2) information channels, 3) feasibility and 4) accessibility of the resource. Key stakeholders, including Alzheimer Society support staff and family caregivers, collaborated with ASC on the development of the tools through focus groups. RESULT: An infographic and a small video series on practical communication tips for caregivers were created. These KTE tools will support caregivers in staying connected to the person living with dementia at all stages of the disease; as the information is broad and digestible, it can be used by other audiences, such as healthcare providers. CONCLUSION: The KTE pilot project is a stepping-stone to establish a more integrative KTE approach to ASC's educational resources. The process established through this project will ensure that those who turn to ASC for information can find reliable, up-to-date and evidence-based content through a variety of tools that are engaging, easy to understand and accessible. 

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

Incorporating young children into family caregiving for people with dementia in Taiwan

Background: Positive attitudes and appropriate knowledge about dementia are essential for the provision of suitable dementia care. Children as future voters may take on a critical role to increase community awareness and knowledge about dementia. Guided by Chinese filial piety cultural virtues, Taiwanese children are taught to respect and care for family seniors and extend this respect to other seniors. Accordingly, young children are considered part of family dementia caregiving system, despite children rarely assume formal caregiver role and not directly provide care work. However, Taiwanese children may possess stigmatized attitudes toward dementia due to a lack of proper dementia knowledge. Research Objective: This study aims to survey Taiwanese children age 9-11 years old attitudes and knowledge to the concepts of dementia. Methods: A total of 312 Taiwanese children from 8 elementary schools in the south Taiwan, aged 9-11 years old, were surveyed to assess their knowledge and attitudes toward dementia. Participants completed The Kids Insight into Dementia (KIDS), which is a 5-scale questionnaire containing three factors, “Personhood”, “Stigma”, and “Dementia Understanding”. The data was analyzed using quantitative method. Results: The results show that Taiwanese children are unfamiliar with dementia as related to brain disease (M= 3.94, SD=2.91), Taiwanese children are unfamiliar about nursing home provision of care (M=3.97, SD=2.17), Taiwanese children do not know the course of dementia disease (M=3.34, SD-1.39). Participants scored high on the question of “people with dementia have hobbies and interests” (M=4.15, SD=1.22); Participants reported that they agreed less often with stigma attached to the people with dementia, including items of “I would feel a bit scared if I met someone dementia in the street” (M=2.70, SD=1.79), ”people with dementia can be creepy” (M=2.18, SD=1.71), “It would be annoying of frustrating to spend time with someone with dementia” (M=2.15, SD=1.17), “It is unlikely that I would meet someone with dementia” (M=2.36, SD=1.27). Conclusions: Our findings suggest that Taiwanese children may express less stigmatized attitudes toward people with dementia and yet they report less understanding of concepts of personhood of people with dementia. Therefore, dementia education is necessary to increase dementia knowledge among school age children in Taiwan.

 

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

Exploring learning processes associated with a cancer pain self-management intervention in patients and family caregivers: A mixed methods study

Objectives: Explore learning processes associated with a psychoeducational pain selfmanagement intervention. Background: Self-management of cancer pain is challenging for patients and their family caregivers (FCs). While psychoeducational interventions can support them to handle these tasks, it remains unclear how learning processes are hampered or facilitated. Methods: A convergent parallel mixed methods design with qualitative data collection embedded in a randomized controlled trial (RCT) was used. Outpatients with cancer and FCs were recruited from three Swiss university hospitals. The six-week intervention consisted of education, skills building, and nurse coaching. Quantitative data on pain management knowledge and self-efficacy were analyzed using multilevel models. Patients and FCs were interviewed post-RCT regarding their learning experiences. Qualitative data analysis was guided by interpretive description. Finally, quantitative and qualitative data were integrated using case level comparisons and a meta-matrix. Results: Twenty-one patients and seven FCs completed this study. The group-by-time effect showed increases in knowledge (p = 0.035) and self-efficacy (p = 0.007). Patients' and FCs' learning through experience was supported by an intervention nurse, who was perceived as competent and trustworthy. After the study, most intervention group participants felt more confident to implement pain self-management. Finally, data integration showed that declining health hampered some patients' pain self-management. Conclusions: Competent and trustworthy nurses can support patients' and FCs' pain self-management by providing individualized interventions. Using a diary, jointly reflecting on the documented experiences, and addressing knowledge deficits and misconceptions through the use of academic detailing can facilitate patients' and FCs' learning of critical skills.

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

The effect of the emotion regulation training on the resilience of caregivers of patients with schizophrenia: a parallel randomized controlled trial

Background: Schizophrenia is the most severe mental chronic disabling disease that the majority of the patients need constant care in a variety of aspects. Regarding the role of family caregivers in taking care of these patients, caregivers need to be resilient, in addition to other psychological traits, to adapt to the circumstance. Objectives: This study aimed to investigate the effect of the emotion regulation training on the resilience of caregivers of patients with schizophrenia in southeastern Iran. Methods: The study was a parallel randomized controlled trial. Seventy caregivers of patients with schizophrenia were selected by convenience sampling method and randomly assigned to an emotion regulation training group and a control group. The intervention group received eight 90-min training sessions (one session weekly) about emotion regulation. The participants completed the Conner–Davidson resilience scale before and one month after the intervention. Results: The mean scores of the resilience increased in the control and intervention groups at the end of the study. A significant difference was found between the two groups (p < 0.001). At the beginning of the study, the mean score of the resilience was 59.94 in the control group and 51.97 in the intervention group. However, the mean score of the resilience in the control group was 61.28 after the intervention, which was not significant, but it was 69.08 in the intervention group, which was significant. A significant difference was observed between two groups in the mean scores (p = 0.01). Conclusions: According to the results of this study, cognitive and metacognitive skills of emotion regulation can be suggested as one of the methods for increasing the psychological well-being of schizophrenia patients’ caregivers. The increase of mental well-being and resilience of caregivers can help them better manage a patient with schizophrenia. Trial registration IRCT registration number: IRCT2017061733997N2, Registration date: 2017-08-16, 1396/05/25, Registration timing: prospective, https://en.irct.ir/trial/26116 

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

Feasibility of an automated bidet intervention to decrease caregiver Burden

Background: Informal caregivers often receive limited training and support, especially in providing assistance with toileting, a physically and emotionally demanding activity of daily living. This increases caregivers' risk for physical injury and burnout and jeopardizes older adults' ability to age in place. Objective: To assess the feasibility, acceptability, and preliminary efficacy of a toileting intervention using an automated bidet to reduce the amount of physical assistance required from caregivers. Methods: Randomized wait-list control feasibility study. Setting: Caregiver's home. Participants: Ten informal caregivers. Intervention: An occupational therapy intervention to educate and train caregiving dyads to use an automated bidet system. Outcomes and Measures: Feasibility was measured in terms of recruitment and retention, bidet installation, ability to operate the bidet, acceptability (a process evaluation), preliminary efficacy (physical barriers and impact on caregiver outcomes of performance, satisfaction, and self-efficacy), and adverse events. Results: All bidets were installed successfully. All caregivers reported that the intervention made toileting easier and increased their confidence. Physical barriers decreased for the treatment group. The bidet had a large effect on self-efficacy for the treatment group. Conclusions and Relevance: The results suggest that the automated bidet intervention is feasible and acceptable and can have a positive impact on caregiver outcomes when assisting with toileting. What This Article Adds: A toileting intervention using an automated bidet is feasible and acceptable for caregivers of older adults and can reduce the amount of physical assistance required from caregivers. 

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

The 4Ms of an Age-Friendly Health System

This article is the first in a new series, Supporting Family Caregivers in the 4Ms of an Age-Friendly Health System, published in collaboration with the AARP Public Policy Institute as part of the ongoing Supporting Family Caregivers: No Longer Home Alone series. The 4Ms of an Age-Friendly Health System (What Matters, Medication, Mentation, and Mobility) is an evidence-based framework for assessing and acting on critical issues in the care of older adults across settings and transitions of care. Engaging the health care team, including older adults and their family caregivers, with the 4Ms framework can help to ensure that every older adult gets the best care possible, is not harmed by health care, and is satisfied with the care they receive.The articles in this new series present considerations for implementing the 4Ms framework in the inpatient hospital setting and incorporating family caregivers in doing so. Resources for both nurses and family caregivers, including a series of accompanying videos developed by AARP and the Rush Center for Excellence in Aging and funded by the John A. Hartford Foundation, are also provided. Nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet—Guide to the 4Ms of an Age-Friendly Health System for Family Caregivers—and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses.

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

Online Educational Tools for Caregivers of People with Dementia: A Scoping Literature Review

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.

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

Designing and Evaluating a Goal-Setting Tip Sheet for Stroke Family Caregiver Health

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. 

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

Culturally adapted psychoeducation among family caregivers of schizophrenic clients: A scoping review

Background: As psychoeducation was originally developed from Western, this intervention should be integrated with a culture to obtain effective outcomes. However, how culturally adapted psychoeducation on family caregivers of schizophrenic client developed in the previous studies has not been systematically documented. Objective: The purpose of this review was to map culturally adapted psychoeducation in the previous studies. Methods: This scoping review followed Arksey and O’Malley approach. Inclusion criteria including family caregiver, culture, psychoeducation, and schizophrenia. Non-primary and non-experiment studies, non-English language, and non-free articles were excluded from the study. Advanced search technique used keywords family caregiver, culture, psychoeducation, schizophrenia on CINAHL, PubMed, and PsycInfo databases. Screening was done by checking duplication, title, and abstract. Full text of relevant articles was read in detail to select eligible articles. Selection results were described in the PRISMA flowchart. Data were analyzed after these were extracted and resumed on the table. Results: A total of eight studies were included in this review. More than half of articles used randomized control trial but these studies did not conduct follow-up. Most of studies were in Asia (6) and it conducted in the outpatient department (6). Almost all studies modified multifamily group psychoeducation with culture theories. The longest duration of intervention was 12 months. Multidiscipline health professional delivered the intervention and most of them were psychiatrist. Coping was the most family caregiver outcomes in reviewed studies. Conclusion: Limited studies were obtained in various ethnics and ways. Further studies need to measure effectiveness of the intervention in long-term effect. 

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

Empowering dementia carers with an iSupport virtual assistant (e-DiVA) in Asia-Pacific regional countries: Protocol for a pilot multisite randomized controlled trial

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. 

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

Tough transitions: Family caregiver experiences with a pediatric long-term ventilation discharge pathway

Objectives: Discharging a child home on long-term ventilation (LTV) via tracheostomy is complex and involves multiple healthcare providers across healthcare sectors. To date, there has been a paucity of data with respect to the experiences of families transitioning a child home on LTV. Our objective was to explore the perceptions of family caregivers (FCs) who have completed a newly developed LTV discharge pathway as they transitioned home. Methods: We conducted 11 semi-structured interviews with FCs. Interviews focused on FC's experience with the training process, perception of competency from a knowledge and skill perspective, and opportunities for improvement. Interviews were audiotaped, transcribed verbatim, coded, and analyzed using an inductive thematic analysis approach. Results: Eight mothers and three fathers of ten children participated. Six primary themes were identified: (1) making an informed decision, (2) transitioning to rehabilitation, (3) building capacity for self-care, (4) coordinating case management, (5) readying for discharge home, and (6) experiencing home care. Conclusion: Overall, FCs felt that the preparation and transition support obtained through the application of a standardized LTV discharge pathway allowed successful attainment of new knowledge and skills necessary to care for their child with LTV at home. 

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

Acceptance and perception of digital health for managing nutrition in people with Parkinson's disease and their caregivers and their digital competence in the United States: A mixed‐methods study

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.

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

The Effects of the Modified Transtheoretical Theory of Stress and Coping (TTSC) Program on Dementia Caregivers' Knowledge, Burden, and Quality of Life

Objectives: This quasi-experimental study aimed to examine the effect of the modified transtheoretical theory of stress and coping (TTSC) program on the knowledge, burden, and quality of life of dementia caregivers. Methods: The participants comprised 60 caregivers (30 participants in each group) selected via purposive sampling, and the study was conducted between October 2018 and September 2019 in a semi-urban area of central Thailand. The experimental group received an 8-week program, while the comparison group received routine care. A self-administered questionnaire was used to collect data. To analyze the intervention's effectiveness, repeat measure ANOVA and Mann-Whitney, Friedman, and Dunn's tests were performed. Results: At the end of the program and again three months after the end of the program, the knowledge and quality of life scores for the experimental group were significantly higher (p < 0.05 and p < 0.05, respectively) than for the control group. The burden score decreased in the experimental group and increased in the control group in week 8 (p < 0.05). There was no statistically significant difference between the groups, as demonstrated by ANOVA (F[1.58] = 2.394; p = 0.127). Conclusions: Our findings show that this program had a positive effect on the caregivers' knowledge and quality of life. However, the program did not affect the caregivers' burden.

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

Dementia care in China: Challenges and recommendations

Background: In China, approximately 84.9% of people with dementia are cared for by family caregivers. Health professionals working in the departments where people with dementia are cared for in public tertiary hospitals are the primary sources to offer a formal diagnosis and treatment to people with dementia in China. Objective: The aim of this study was to explore family caregivers' expectations on dementia care, and the dementia knowledge and attitudes of health professionals in China. Method: Mixed method was used to collect data from April to December 2019. Surveys were used to evaluate health professionals' (n=603) dementia knowledge and attitudes in eleven public tertiary hospitals in Hebei Province in China. Semi-structured interviews were conducted in three public tertiary hospitals where family caregivers of people with dementia (n=21) were recruited. Result: The health professionals demonstrated limited knowledge of dementia and a low level of positive attitude. They expressed that it was challenging to communicate with people with dementia and to cope with their symptoms. Family caregivers reported that they received limited support from the community, hospital, and society and they held little hope of receiving such support. Most of the caregivers expected more financial support from the government, and more training in dementia care from health professionals. They also expressed their desire to have a professional caregiver in the nursing homes to provide optimal dementia care for their relatives. Conclusion: Health services in China are inadequately prepared to deal with the challenges of dementia care. More emphasis is needed on specialized education and training for caregivers and health professionals to improve their knowledge and to modify their attitudes. Family caregivers expected more support from the health system to enable improved care for people with dementia. An integrated health system for dementia care is needed in China. 

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

Educational intervention to improve palliative care knowledge among informal caregivers of cognitively impaired older adults

Objective: Lack of palliative care knowledge among caregivers may pose an access barrier for cognitively impaired older adults, who may benefit from the specialized care. Therefore, this study aims to examine the effectiveness of an educational intervention in improving palliative care knowledge among informal caregivers of cognitively impaired older adults. Method: Using a one-group, pre- and post-test intervention design, this study implemented an individual, face-to-face educational intervention with an informational brochure for 43 informal caregivers of chronically or seriously ill older adults (50+) with cognitive impairment, recruited from communities in West Alabama. Their level of knowledge about palliative care was assessed by the Palliative Care Knowledge Scale (PaCKS). The pre- and post-test scores were compared by the Wilcoxon signed-ranks test, and the racial subgroup (Whites vs. Blacks) comparison was made by the Mann–Whitney U test. Results: There was a statistically significant difference between the pre- and post-test scores (z = 5.38, p < 0.001), indicating a statistically significant effect of the educational intervention in improving palliative care knowledge among participants. There was a significant difference (U = 143, p < 0.05) between Whites and Blacks in the pre-test, which, however, disappeared in the post-test (U = 173.50, p > 0.05), suggesting that the amount of increased PaCKS scores were significantly greater for Blacks (Mdn = 9.50) than for Whites (Mdn = 4.00, U = 130.50, p < 0.05). Significance of results: This study demonstrated that a one-time educational intervention can improve the level of palliative care knowledge among informal caregivers of chronically or seriously ill older adults with cognitive impairment, particularly among Black caregivers. Therefore, further educational efforts can be made to promote palliative care knowledge and reduce racial disparities in palliative care knowledge and its use.

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

Care without sufficient knowledge of people with home enteral tube feeding: A qualitative study

Objectives: This study aimed to explore family caregivers experiences with tube feeding at home in Iran. Methods: This qualitative study was conducted with purposefully selected family caregivers who participated in an in-depth, semi-structured, face-To-face interview. Data analysis was performed through content analysis and rigor was investigated. Results: In total, 20 caregivers were interviewed. Two main categories were found in the interview data: abandoned training and lack of knowledge of nutrition . Participants felt abandoned and unsupported by health professionals. Participants also reported feeling that health professionals passed the training responsibility to other health professionals who did not give training. This resulted in participants feeling obligated to learn from their peers. Participants lacked knowledge about nutrition, as well as how to prepare home-made formula for feeding, the correct position for feeding and feeding times. Conclusion: Despite having a heavy and vital responsibility, participants felt that they had not been adequately trained and thus faced making errors, resulting in negative consequences for the patient and the family. Therefore, appropriate plans must be made to promote preparation for home care. 

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

The ‘work’ of managing medications when someone is seriously ill and dying at home: A longitudinal qualitative case study of patient and family perspectives’

Background: Managing medications can impose difficulties for patients and families which may intensify towards the end of life. Family caregivers are often assumed to be willing and able to support patients with medications, yet little is known about the challenges they experience or how they cope with these. Aim: To explore patient and family caregivers’ views of managing medications when someone is seriously ill and dying at home. Design: A qualitative design underpinned by a social constructionist perspective involving interviews with bereaved family caregivers, patients and current family caregivers. A thematic analysis was undertaken. Setting/participants: Two English counties. Data reported in this paper were generated across two data sets using: (1) Interviews with bereaved family caregivers (n = 21) of patients who had been cared for at home during the last 6 months of life. (2) Interviews (n = 43) included within longitudinal family focused case studies (n = 20) with patients and current family caregivers followed-up over 4 months. Results: The ‘work of managing medications’ was identified as a central theme across the two data sets, with further subthemes of practical, physical, emotional and knowledge-based work. These are discussed by drawing together ideas of illness work, and how the management of medications can substantially add to the burden placed on patients and families. Conclusions: It is essential to consider the limits of what it is reasonable to ask patients and families to do, especially when fatigued, distressed and under pressure. Focus should be on improving support via greater professional understanding of the work needed to manage medications at home.

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

Use of a Caregiver Coaching Model for Implementation of Intensive Motor Training for Hemiplegic Cerebral Palsy: A Case Study

Background: There is extensive literature to support the efficacy of both pediatric constraint-induced movement therapy (pCIMT) and hand-arm bimanual intensive therapy (HABIT) for children with hemiplegic cerebral palsy. In addition, there is increasing evidence to support the training of caregivers (parents and other care providers) to carry out therapy interventions in the home. The Family Activity Adaptation Model (FAAM) presents guidelines for parent and caregiver coaching for intensive therapies used in occupational therapy practice. Method: In this descriptive case study the FAAM was used to frame caregiver training to answer the question: Is a coaching model, using a participant other than the primary caregiver, an effective intervention delivery method for intensive therapies for a 2-year-old with hemiplegic cerebral palsy? Outcome measures included the Canadian Occupational Performance Measure, Pediatric Motor Activity Log, Pediatric Evaluation of Disability Inventory, Goal Attainment Scaling, and grip strength and range of motion. Results: The results demonstrated that gains were made on six of seven outcome measures, including both child performance outcomes and parent satisfaction measures. Conclusion: Caregiver coaching using FAAM principles for intensive motor therapy intervention resulted in gains on a variety of outcome measures. Further research is needed.

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

Unmet family caregiver training needs associated with acute care utilization during home health care

Background/Objectives: Medicare-certified home health agencies are required to offer family caregiver training, but little is known regarding the potential impact of this training on outcomes during home health care. We estimate the proportion of family caregivers assisting Medicare home health patients who have unmet training needs and examine whether these unmet training needs are associated with older adults' risk of acute care utilization during home health care. Design: Observational, nationally representative cohort study. Setting: Linked National Health and Aging Trends Study, Outcome and Assessment Information Set (OASIS), Medicare Provider of Services file, and Medicare claims data from 2011 to 2016. Participants: Thousand two hundred seventeen (weighted n = 5,870,905) community-living Medicare beneficiaries who received home health care between 2011 and 2016. Measurements: Family caregivers' unmet training needs measured from OASIS and Medicare claims; home health patients' acute care utilization (including emergency department use and hospitalization) measured from OASIS. Results: Rates of unmet need for training varied by activity, from 8.2% of family caregivers assisting with household chores to 16.0% assisting with self-care tasks. After controlling for older adult and home health provider characteristics, older adults whose family caregivers had an unmet need for training with any caregiving activity were twice as likely to incur acute care utilization during their home health episode (adjusted odds ratio [aOR]: 2.01, 95% confidence interval [CI]: 1.20–3.38). This relationship held across specific caregiving activities including household chores (aOR: 1.98; 95% CI: 1.13–3.46), medication management (aOR: 2.50; 95% CI: 1.46–4.26), patient supervision (aOR: 2.92; 95% CI: 1.36–6.24), and self-care tasks (aOR: 3.11; 95% CI: 1.62–6.00). Conclusions and Relevance: Unmet training needs among family caregivers are associated with greater likelihood of acute care utilization among Medicare beneficiaries receiving home health care. Identifying and addressing family caregivers' training needs may reduce older adults' risk of acute care utilization during home health care. 

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

Web-Based Delivery of the Caregiving Essentials Course for Informal Caregivers of Older Adults in Ontario: Mixed Methods Evaluation Study

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.

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

Using a Mechanical Lift at Home

The article is part of a series, which supporting Family Caregivers, and published in collaboration with the AARP Public Policy Institute. Topics discussed include results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers; and this series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home.

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

The treatment burden of long-term home noninvasive ventilation

The prevalence of long-term home noninvasive ventilation (NIV) has progressively increased over recent decades, supported by evidence of clinical effectiveness in a range of conditions leading to chronic respiratory failure. Simultaneous technological developments have improved the reliability, portability, and comfort of devices, making NIV increasingly accessible and acceptable as a treatment option. Clinicians are usually fully cognisant of the clinical outcomes they anticipate when recommending or initiating long-term NIV, for example prolonging life, preventing complications or healthcare utilisation, and/or improving symptoms. The evidence on key clinical outcomes is variable between conditions but is comprehensively evaluated in relevant clinical guidelines; traditionally less emphasis is placed on the potential practical and psychosocial implications of domiciliary NIV. However, the preferences, values and resources of individuals can have a significant impact on NIV usage and therefore may affect potential clinical benefit. This editorial discusses the healthcare-associated workload, also known as the treatment burden, of domiciliary NIV that may be shouldered by patients, their families and caregivers, justifying why the cost/benefit ratio must be carefully considered on an individual basis.

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

Training and support for caring for a child's gastrostomy: A survey with family carers

Objective: The aim of this study was to explore family carers' experiences of training and ongoing support for caring for their child's gastrostomy, and to get their views on how this could be improved. Methods: A mixed-methods online survey with 146 family carers (eg, parents, grandparents) who care for a child with a gastrostomy. Family carers rated their own experience of training and support and made recommendations for how training and support could be improved for future families. Results: The nature and extent of the training family carers reported receiving varied considerably. Many felt that the demonstrations they received in hospital were too brief. Two in five family carers rated their confidence caring for their child's gastrostomy as very low in the first few weeks after surgery. Parents valued ongoing learning and support from other parents and support from community nurses. Videos and simulation practice were rated as useful formats of training, in addition to face-to-face supervised practice with a clinician. Parents liked how real life the example video shown was, and rated nearly all suggested video topics as € very helpful', especially troubleshooting topics. Conclusions: Our study found substantial variability in family carers' descriptions of the training and support they received to care for their child's gastrostomy. Training often did not meet family carers' needs. We need to invest in better training and support for families and learn from their recommendations. Improvements to training and support for families (eg, through instructional videos) have the potential to improve family carers' confidence and competence, and reduce the risk of problems and complications which cause harm to children and increase demand on National Health Service (NHS) resources. 

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

SYMPERHEART: an intervention to support symptom perception in persons with heart failure and their informal caregiver: a feasibility quasi-experimental study protocol

Introduction: Symptom perception in heart failure (HF) has been identified as crucial for effective self-care, and is related to patient and health system outcomes. There is uncertainty regarding the feasibility and acceptability of symptom perception support and doubts regarding how to include informal caregivers. This study aims to test the feasibility, acceptability and outcome responsiveness of an intervention supporting symptom perception in persons with HF and their informal caregiver. Methods and analysis: A feasibility study with a quasi-experimental pretest and post-test single group design is conducted. The convenience sample consists of 30 persons with HF, their informal caregivers and six nurses. SYMPERHEART is an evidence-informed intervention that targets symptom perception by educational and support components. Feasibility is measured by time-to-recruit; time-to-deliver; eligibility rate; intervention delivery fidelity rate. Acceptability is measured by rate of consent, retention rate, treatment acceptability and the engagement in the intervention components. Outcome responsiveness includes: HF self-care (via the Self-care of Heart Failure Index V.7.2); perception of HF symptom burden (via the Heart Failure Somatic Perception Scale V.3); health status (via the Kansas City Cardiomyopathy Questionnaire-12); caregivers’ contribution to HF self-care (via the Caregiver Contribution to Self-Care of Heart Failure Index 2); caregivers’ burden (via the Zarit Burden Interview). Clinical outcomes include HF events, hospitalisation reason and length of hospital stay. Descriptive statistics will be used to report feasibility, acceptability, patient-reported outcomes (PRO) and clinical outcomes. PRO and caregiver-reported outcome responsiveness will be reported with mean absolute change and effect sizes. Ethics and dissemination: The study is conducted according to the Declaration of Helsinki. The Human Research Ethics Committee of the Canton of Vaud, Switzerland, has approved the study. Written informed consent from persons with HF and informal caregivers are obtained. Results will be published via peer reviewed and professional journals, and further disseminated via congresses. Trial registration number: ISRCTN18151041.

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

Sensitizing family caregivers to influence treatment compliance among elderly neglected patients—a 2-year longitudinal study outcome in completely edentulous patients

Background: Healthcare workers have reported a certain segment of geriatric patients that are suffering from abuse/neglect, which in turn has been associated with anxiety, depression, and helplessness in the individual. Family caregivers (blood relations), being the most common perpetrators of elder abuse and neglect (EAN), have also been shown to respond to sensitization if the type of EAN and the interventions are appropriate. Objectives: This study was aimed to comparatively analyze the influence of intervention (psychotherapeutic sensitization of FCG) upon long-term (24 months) treatment maintenance and satisfaction in elderly neglected patients. Methods: One hundred and fifty patients (aged 41–80 years) suffering from elder neglect (EN) (self-confession) and their respective FCGs, fulfilling the study criteria, participated in this longitudinal 2-year study. The patients were randomly dis-tributed (simple random, convenient) in two equal groups (75 each), namely Group (GP) A (control) and GP B (test). A standardized, complete denture treatment was initiated for all the participants. Both the FCGs and the patients of GP B were sensitized (psychotherapeutic education) for EN, while there was no such intervention in GP A. The influence of such intervention was measured for denture maintenance [denture plaque index (DPI) scores] and treatment satisfaction (10-point visual analog scale). Absolute/relative frequencies and means were major calculations during data analysis. Differences between the groups for any treatment compliance parameter was done through the unpaired t-test, while Karl Pearson’s test determined the level of relationship between variables (p-value < 0.05). Results: Decrease in mean DPI scores (suggesting improvement) was seen among patients in GP A from 1 month (m = 2.92) to 24 months (m = 2.77). A negligible increase in DPI scores was observed among patients of GP B from 1 month (m = 1.38) to 24 months (m = 1.44). Differences in mean values between the two groups were statistically significant at 24-month intervals, while the relationship between the variables was nonsignificant. FCG sensitization through psychotherapeutic education shows a long-term positive influence on the treatment compliance (maintenance and satisfaction). Conclusions: Identifying the existence of EAN among geriatric patients, followed by psychothera-peutic education of FCGs is recommended for routine medical and dental long-duration treatment procedures. 

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

Scoping Review of Family Interventions That Support the Physical Health of Caregivers

Purpose: Family interventions have been developed to support carers of people with mental illness, but not much is known about how such interventions can improve carers' physical health. This review aimed to identify and analyze existing family interventions that addressed the physical health of carers. Methods: A scoping review was conducted to identify peer-reviewed journal articles on family interventions with physical health components. A total of six articles were found and analyzed thematically to identify the family interventions, physical health components of the interventions, and associated physical health outcomes. Results: Synthesis of the findings from relevant articles showed that the development of physical health components in family interventions is emerging and at an early stage. However, most studies had physical health as a minor area focusing mainly on stress and sleep. Conclusions: Family interventions would be more holistic if consideration of physical health issues was addressed as a core module.

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

Replicating an effective VA program to train and support family caregivers: a hybrid type III effectiveness-implementation design

Background: Caring for a growing aging population using existing long-term care resources while simultaneously supporting and educating family caregivers, is a public health challenge. We describe the application of the Replicating Effective Programs (REP) framework, developed by the Centers for Disease Control Prevention and used in public health program implementation, to scale up an evidence-based family caregiver training intervention in the Veterans Affairs (VA) healthcare system. Methods: From 2018 to 2020, clinicians at eight VA medical centers received REP-guided implementation including facilitation, technical assistance, and implementation tools to deliver the training program. The project team used the REP framework to develop activities across four distinct phases – (1) pre-conditions, (2) pre-implementation, (3) implementation, and (4) maintenance and evolution – and systematically tracked implementation facilitators, barriers, and adaptations. Results: Within the REP framework, results describe how each medical center adapted implementation approaches to fit local needs. We highlight examples of how sites balanced adaptations and intervention fidelity. Conclusions: The REP framework shows promise for national expansion of the caregiver training intervention, including to non-VA systems of care, because it allows sites to adapt while maintaining intervention fidelity. Trial registration NCT03474380. Date registered: March 22, 2018.

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

A qualitative study on the needs of cancer caregivers in Vietnam

Background: Vietnam has experienced a rapid increase in cancer incidence with many cancers (70%) being diagnosed at a late stage. The majority of physical and psychosocial care is provided by caregivers with minimal professional input. Due to limited resources in hospitals and social and cultural norms regarding caregiving in Vietnam, caregivers provide a range of supportive functions for family members diagnosed with cancer. Objectives: This study sought to provide empirical evidence on the self-identified unmet needs of caregivers of inpatients in national oncology hospitals in Vietnam. Methods: Focus groups and in-depth interviews were conducted with caregivers (n = 20) and health care providers (n = 22) in national oncology hospitals in Hanoi and Ho Chi Minh City. Data was collaboratively analysed using thematic analysis. Findings were validated through key stakeholder group discussions with both caregivers and healthcare providers across multiple regions in Vietnam. Results: Analysis demonstrated that the burden of informal care is high with many caregivers managing patient’s severe and complex health needs with minimal support. Caregivers highlighted four main areas of critical need: (i) challenges in providing long term care, particularly in hospital and in-patient settings, such as accessing comfortable facilities, accommodation and finance; (ii) information needs about cancer, treatment, and nutrition; (iii) support for the emotional impact of cancer; and (iv) training about how to provide care to their family members during treatment and recovery phases. Conclusions: Caregivers provide invaluable support in supporting people with a cancer diagnosis, particularly given wider systemic challenges in delivering cancer services in Vietnam. Increasing visibility and formal support is likely to have both a positive impact upon the health and wellbeing of caregivers, as well as for cancer patients under their care. Given its absence, it is critical that comprehensive psychosocial care is developed for caregivers in Vietnam. 

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

Qualitative research of informal caregivers’ personal experiences caring for older adults with dementia in Lithuania

Background: In many communities around the world, informal caregivers of older adults with dementia represent an essential, yet often underappreciated, source of long-term care. The present study aimed to determine the personal experiences of such caregivers, which could be instrumental for developing means of improving the quality of care for both care receivers and their informal caregivers. Methods: Five semi-structured focus-group discussions were held. The participants (n = 31) were all informal caregivers of older adults with dementia. The focus-group discussions were audio-recorded and transcribed verbatim. An inductive approach was used, and thematic data analysis was applied. Results: Four thematic categories were identified: learning caregiving through personal experience; implications of caregiving on social wellbeing; caregivers’ contradictory emotions regarding care delivery; and addressing challenges regarding care provision. Conclusions: This study revealed, among the informal caregivers, a variety of experiences, contradicting feelings, and problem-solving strategies relating to the care of older adults with mental disorders. Becoming an effective caregiver involves professional and psychological development. Developing caregiving skills, supportive environment and positive attitude can help facilitate providing care. Caregiving largely impacts the emotional, physical, and social wellbeing of the person; thus, comprehensive approaches are needed to prevent burnout and associated social disadvantages.

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

A qualitative exploration of the unmet information needs of Chinese advanced cancer patients and their informal caregivers

Background: Studies in the West have demonstrated that appropriate informational support is a vital component of cancer care, with positive effects on both patients and their informal caregivers. Since little is known about the information needs of advanced cancer patients and informal caregivers in China, where ‘silence as virtue’ is much more valued and the communication style is less open, this study was therefore conducted to elaborate the information needs of advanced cancer patients and informal caregivers as well as to explore their perceptions and experiences regarding their unmet information needs in the Chinese context. Methods: This sub-study of a previous cross-sectional survey utilized a qualitative descriptive study design. The approach involved semi-structured interviews that followed an interview guide to collect data. Eligible participants were the advanced cancer patients and informal caregivers who had participated in the previous cross-sectional survey and reported unmet information needs. Each interview was audio-recorded and transcribed verbatim. Descriptive content analysis was used to analyze the data. Results: Seventeen advanced cancer patients and 15 informal caregivers with unmet information needs participated in the semi-structured interviews, with ages ranging from 32 to 63 years old for patients and from 32 to 70 for informal caregivers. Four categories were extracted from the interviews with the patients and caregivers: (1) types of unmet information needs; (2) reasons for information needs not being met; (3) preferences for the provision of information; and (4) meaning and role of information. Each category had two to four sub-categories for both the patients and the caregivers, which were similar but not completely the same. Conclusion: The findings indicated that the provision of appropriate information could promote informed decision-making and greater satisfaction with treatment options, reductions in psychological disturbances, and enhanced confidence and ability in self-management and capacity in caregiving. Moreover, information on Traditional Chinese Medicine and food therapy should be increased, particularly for patients at the follow-up stage, while the amount of information on prognosis should be flexible as it could increase patients’ and caregivers’ psychological burden. Healthcare professionals were the most preferred information provider, although their heavy workload resulted in time constraints. In this case, they should provide information to patients and caregivers together as a ‘whole unit.’ At the same time, the value of separate conversations should also be recognized as some caregivers preferred to conceal unpleasant information from the patient.

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

Psychoeducational Program for the Family Member Caregivers of People with Dementia to Reduce Perceived Burden and Increase Patient's Quality of Life: A Randomized Controlled Trial

Background: Dementia is one of the world's greatest public health issues. Most people with dementia receive home care, and family members are vulnerable to feeling burdened and depressed that reinforces the need for caregiver-driven services to mitigate these negative effects. Objective: The purpose of this research was to evaluate the effect of the psychoeducational program on burden and quality of life of family caregivers for people with dementia. Methods: This randomized controlled trial (RCT) was conducted on 60 family caregivers. Participants were randomly assigned to receive either the 8-session psychoeducational program (study group) or routine care only (control group). The demographic data of the caregivers and their patients, the burden of caregivers using Zarit Burden Interview (ZBI), and the quality of life of the patients using Quality of Life in Alzheimer Disease (QoL-AD) questionnaire were measured before and after the psychoeducational program and compared between the study group and the control group. Results: The results revealed that 80% of the family caregivers were female and 42% were daughters. The mean ± SD of the baseline burden was 61 ± 13.7 and 60.9 ± 10 in the study and the control group, respectively. ZBI burden score in the study group demonstrated a significant drop after the psychoeducational program compared to the control group. Logistic regression analysis showed that caregivers who received the psychoeducational program have OR (95% CI) of 14 (3.1-67.8) compared to those who did not receive the psychoeducational program. Conclusions: Psychoeducational program is effective in reducing the family caregivers' perceived burden. These findings need to be considered in developing comprehensive dementia care programs to well increase the strategies that help caregivers to deal with their patients.

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

Prognostic awareness in advanced cancer patients and their caregivers: A longitudinal cohort study

Objective: The aim of this study was to analyse longitudinal development of prognostic awareness in advanced cancer patients and their families. Methods: This was a longitudinal cohort study, involving 134 adult cancer patients, 91 primary family caregivers and 21 treating oncologists. Key eligibility criterion for patients was life expectancy less than 1 year (estimated by their oncologists using the 12‐month surprised question). Structured interviews, including tools to measure prognostic awareness, health information needs, and demographics were conducted face to face or via phone three times over 9 months. Forty‐four patients completed all three phases of data collection. Results: Only 16% of patients reported accurate prognostic awareness, 58% being partially aware. Prognostic awareness of both patients and family caregivers remained stable over the course of the study, with only small non‐significant changes. Gender, education, type of cancer, spirituality or health information needs were not associated with the level of prognostic awareness. Family caregivers reported more accurate prognostic awareness, which was not associated with patients' own prognostic awareness (agreement rate 59%, weighted kappa 0.348, CI = 0.185–0.510). Conclusions: Prognostic awareness appears to be a stable concept over the course of the illness. Clinicians must focus on the initial patients' understanding of the disease and be able to communicate the prognostic information effectively from the early stages of patients' trajectory. 

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

Pressure Injury Prevention Knowledge Among Family Caregivers of Patients Needing Home Care

Background: One of the complications that patients in need of home healthcare might experience is pressure injury. Given that a significant part of the care of these patients is performed by their family caregivers, they must have sufficient knowledge about prevention and treatment of pressure injuries. Methods: We investigated the knowledge related to pressure injuries among family caregivers of patients needing home care who were at risk of pressure injury. Family caregivers of patients in Iran who needed home care services and were at risk of developing pressure injuries based on the Braden scale were invited to participate. A special questionnaire designed by Arboledas and Pancorbo-Hidalgo was used to assess the caregivers' level of knowledge. This questionnaire consists of 23 items, and with total scores between 23 and 46. A higher score indicates a higher level of knowledge about pressure injuries. A total of 323 family caregivers participated, most of whom were female. Results: The mean total score of caregivers' knowledge about pressure injuries was 34.5 ± 3.4 (ranging 23 to 42). Most of the participants (n = 290) stated they did not receive adequate education related to pressure injuries. Among the demographic variables, a significant relationship was observed between the level of caregivers' knowledge with the level of education, younger age, offspring, admission in intensive care units, and male sex (p < 0.005). Conclusions: Family caregivers did not have sufficient knowledge about pressure injuries. Most of them did not receive the necessary education during the time of their patient's hospitalization. This issue should be considered by healthcare providers, and the necessary interventions should be considered to improve the situation.

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

Policy Opportunities to Support Family Caregivers Managing Pain in People with Dementia

The inherent challenges of an aging population and increased frailty include physical, social, psychological, and cognitive issues and associated complexities. With the growing population of persons living with dementia (PLWD), the need for continued support of family caregivers for these individuals also grows. Chronic pain is a common problem among older adults. The 2016 Global Burden of Disease Study reported pain as the leading cause of disability and disease burden globally (Vos et al., 2017). Pain management is a key aspect of the family caregiver role, but many family caregivers need education, support, and training to ensure that their loved ones' pain-related needs are addressed. As the demand for family caregiving increases, policymakers must acknowledge the expanding surrogacy role that caregivers play with PLWD and develop policies to address this need. This paper reviews the problem of pain in PLWD and the family caregiver's role. Two pieces of legislation—the Older Americans Act and the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act—are reviewed as opportunities for pain management nursing policy advocacy.

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

Patient and Family Engagement in Catheter-Associated Urinary Tract Infection (CAUTI) Prevention: A Systematic Review

Background: Catheter-associated urinary tract infections (CAUTIs) are detrimental to health and are largely preventable with adherence to CAUTI prevention guidelines. Patient and family engagement in CAUTI prevention is often encouraged in these guidelines; however, little is known about how this engagement is operationalized in practice. Methods: A systematic review was conducted to synthesize the content, format, and outcomes of interventions that engage patients and/or families in CAUTI prevention. Two reviewers independently screened records from four databases up to March 2021 and searched reference lists of final articles. Included articles were primary research, tested an intervention, involved indwelling urinary catheters, and described at least one patient and/or family engagement method. Articles were appraised for quality using the Downs and Black checklist. Findings: After 720 records were screened, 12 were included. Study quality ranged from good to poor, scoring lowest in internal validity. The most common formats of patient/family engagement were flyers/handouts (83.3%) and verbal education (58.3%). Common content areas were urinary catheter care and maintenance strategies. Most study outcomes (83.3%) measured CAUTI rates, and half measured patient/family-related outcomes. Improvements were seen in at least one outcome across all studies, but less than half (41.7%) showed statistically significant results. The researchers found that most interventions lacked sufficient detail on the content, delivery, and/or outcome measurement of patient/family engagement, which limits transferability. Conclusions: More high-quality, generalizable trials are warranted in this area. Future research should focus on integrating publicly available resources into practice that can be tested for comprehension and revised based on feedback from target audiences.

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

On the way home: a BCI-FES hand therapy self-managed by sub-acute SCI participants and their caregivers: a usability study

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.

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

Nursing interventions improve preparedness, competence, reward and burden of family caregivers in end-of-life care at home

Informal family caregivers play a crucial role in end-of-life care, especially in the community. However, family caregivers are known to have high needs and psychological morbidity, including fatigue, sleep problems, depression, anxiety and burnout. Palliative care aims to provide psychosocial support to patients and families facing terminal illness. Interventions that aim to support family caregivers are increasing and have been reported in the literature. Implications for practice and research: Nurses should provide individualised interventions to support family caregivers in end-of-life-care at home. Multicomponent interventions have the potential to address the complex needs of family caregivers. Future research needs to establish effective interventions and their related components.

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

A Nurse-Led Education Program for Pneumoconiosis Caregivers at the Community Level

Background: Pneumoconiosis is an irreversible chronic disease. With functional limitations and an inability to work, pneumoconiosis patients require support from family caregivers. However, the needs of pneumoconiosis caregivers have been neglected. Objectives & Methods: This study aimed to evaluate the effectiveness of a nurse-led education program, which involved four weekly 90-min workshops led by an experienced nurse and guided by Orem’s self-care deficit theory. A single-group, repeated-measure study design was adopted. Caregivers’ mental health (Hospital Anxiety and Depression Scale, HADS, four single items for stress, worriedness, tiredness, and insufficient support), caregiving burdens (caregiving burden scale, CBS), and unmet direct support and enabling needs (Carer Support Needs Assessment Tool, CSNAT) were measured at the baseline (T0), immediately after (T1), and one month after intervention (T2); 49, 41, and 28 female participants completed the T0, T1, and T2 measurements. Mean age was 65.9 years old (SD 10.08) with a range between 37 and 85 years old. Results: The program improved the caregivers’ mental wellbeing, and reduced their caregiving burdens and their unmet support and enabling needs, both immediately (T1) and one-month after the intervention (T2). In particular, the intervention improved the caregivers’ mental wellbeing significantly, specifically depression symptoms, stress, and tiredness immediately after the intervention; and reduced most of their unmet support needs and unmet enabling needs one-month after the intervention. Conclusions: This was the first nurse-led program for pneumoconiosis caregivers and should serve as a foundation for further studies to test the program with robust designs.

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

Navigating through incontinence: A qualitative systematic review and meta-aggregation of the experiences of family caregivers

Background: Community dwelling older adults who are care dependent are highly affected by incontinence, resulting in substantial informal caregiver burden. Understanding the experiences of these caregivers is needed to develop supportive programs that reduce caregiver burden and rates of institutionalization for care recipients. Objectives: This systematic review aimed to critically appraise and synthesize the qualitative literature on the perceptions, experiences, and consequences of informal caregivers managing incontinence in community dwelling older adults. Design: A qualitative evidence synthesis using meta-aggregation. Data sources: CINAHL, Embase, Ovid Medline, PsycInfo, Scopus, and ProQuest Dissertations and Theses. Review methods: A comprehensive search was conducted to identify qualitative studies of all designs, published in English from January 1970 to November 2020, reporting on the experiences of unpaid adult family members or friends providing care at home to an adult aged 60 or older with urinary and/or fecal incontinence. Screening, data extraction, and quality appraisal were conducted independently by two reviewers, with disagreements resolved by consensus with all team members. Joanna Briggs Institute (JBI) processes were used to assess study quality, and the dependability and credibility of both study findings and synthesized findings. All articles included met predetermined criteria. Results: Database searches yielded 1165 references, of which 117 full-text documents were screened. Seven articles of moderate to high methodological quality met eligibility criteria and were included. Studies occurred in nine countries with 134 participants who were mostly female spouses of the care recipient. From these eligible studies, 49 findings were extracted with 35 equivocal or credible findings eligible for meta-aggregation. Findings were synthesized into the following four categories: 1) emotional responses, 2) physical, financial, and social consequences, 3) family roles and caregiver support, and 4) management and coping strategies. Conclusions: Informal caregivers experience many physical, psychosocial, and financial challenges in caring for an older family member with incontinence. Educational and supportive programs for managing incontinence should be multi-component and tailored to meet the individual needs of informal caregivers. Future research should incorporate strategies to cope with emotional responses and offer practical strategies for managing incontinence. 

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

‘My wife is my doctor at home’: A qualitative study exploring the challenges of home-based palliative care in a resource-poor setting

Background: Family caregiving is common globally, but when a family member needs palliative and end-of-life care, this requires knowledge and expertise in dealing with symptoms, medication, and treatment side effects. Caring for a family member with advanced prostate cancer in the home presents practical and emotional challenges, especially in resource-poor contexts, where there are increasing palliative cases without adequate palliative care institutions. Aim: The study explored palliative and end-of-life care experiences of family caregivers and patients living at home in a resource-poor context in Ghana. Design: This is a qualitative study using thematic analysis of face-to-face interviews at two-time points. Participants: Men living with advanced prostate cancer (n = 23), family caregivers (n = 23), healthcare professionals (n = 12). Findings: Men with advanced prostate cancer face complex issues, including lack of access to professional care and a lack of resources for homecare. Family caregivers do not have easy access to professional support; they often have limited knowledge of disease progression. Patients have inadequate access to medication and other practical resources for homecare. Caregivers may be overburdened and perform the role of the patient’s ‘doctor’ at home-assessing patient’s symptoms, administering drugs, and providing hands-on care. Conclusion: Home-based care is promoted as an ideal and cost-effective model of care, particularly in Westernised palliative care models. However, in resource-poor contexts, there are significant challenges associated with the implementation of this model. This study revealed the scale of challenges family caregivers, who lack basic training on aspects of caring, face in providing home care unsupported by healthcare professionals.

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

The Journey of Recovery: Caregivers' Perspectives From a Hip Fracture Telerehabilitation Clinical Trial

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.

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

Investigation of the effects of interventions made according to the Progressively Lowered Stress Threshold Model on the care outcomes of Alzheimer patients and their families: a randomized clinical trial

Background: One of the non‐pharmacological methods used to reduce behavioural problems of Alzheimer's patients and the negative emotions accordingly experienced by caregivers consists of interventions performed according to the Progressively Lowered Stress Threshold (PLST) model. Methods: This randomized controlled study aimed to determine the effect of interventions performed according to PLST on the care burden, care satisfaction, and life satisfaction of caregivers of middle and advanced stage Alzheimer's disease patients, and on the neuropsychiatric symptoms and agitation levels of these patients. The research was conducted with a total of 29 caregivers divided into intervention (15) and control (14) groups. Data were collected using an Introductory Information Form, plus the Standardised Mini‐Mental State Examination, Neuropsychiatric Inventory, Cohen‐Mansfield Agitation Inventory, Carer's Assessment of Satisfaction Index, and Life Satisfaction Scale. Three home visits were made to the caregivers by the researchers in the first, second, and twelfth weeks of the intervention. During the home visits, face‐to‐face training was given as necessary to the individual caring for problems identified in the nursing care plan according to PLST. Results: As a result of the PLST training, there was a decrease in the behavioural problems of Alzheimer's patients, along with a decrease in the care burden of the caregivers and an increase in their care satisfaction. When the scale total scores of the individuals in the intervention and control groups were compared, it was found that only caregivers' care satisfaction increased at a statistically significant level (P < 0.05). Conclusion: At the end of the training given according to PLST, it was found that behavioural problems of Alzheimer's patients and the care burden of caregivers had decreased, and the care satisfaction of caregivers increased. It is recommended that Alzheimer's patients and their caregivers be given training and interventions according to PLST.

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

Interventions for Family Members After Long-Term Care Placement of a Relative With Dementia: A Systematic Review and Meta-Analysis

Objectives: The current systematic review aimed to identify, appraise, and synthesize the available evidence regarding interventions that assisted family members of long-term care facility residents with dementia to cope with stressful situations. Methods: A search of published articles in eight databases was performed. Results: In total, 1,293 records were identified, with six studies included in this systematic review. Interventions were categorized as education/skill training, psychoeducation, and psychosocial support. The risk of bias across the included studies varied from moderate to high. The intervention components, dose, and delivery methods differed widely with mixed results. The interventions showed potential benefits for reducing family members' stress-related outcomes (e.g., stress appraisal, guilt) and residents' problematic behaviors. Yet, meta-analysis yielded a non-significant pooled effect for reducing family members' depressive symptoms (mean difference = 1.38, 95% confidence interval [–2.27, 5.04], The current systematic review aimed to identify, appraise, and synthesize the available evidence regarding interventions that assisted family members of long-term care facility residents with dementia to cope with stressful situations. A search of published articles in eight databases was performed. In total, 1,293 records were identified, with six studies included in this systematic review. Interventions were categorized as education/skill training, psychoeducation, and psychosocial support. The risk of bias across the included studies varied from moderate to high. The intervention components, dose, and delivery methods differed widely with mixed results. The interventions showed potential benefits for reducing family members' stress-related outcomes (e.g., stress appraisal, guilt) and residents' problematic behaviors. Yet, meta-analysis yielded a non-significant pooled effect for reducing family members' depressive symptoms (mean difference = 1.38, 95% confidence interval [–2.27, 5.04], p = 0.46). Conclusions: Evidence in this field is currently insufficient and more well-designed studies with larger sample sizes and use of theoretical frameworks are needed. 

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

Informational Needs of the Families of Patients Discharged From Intensive Care Units: A Case of Iran

Background: thousands of patients are admitted to intensive care units annually, which is a stressful event. Many of these patients still require particular care after discharge. In many countries, families play an essential role in taking care of these patients after discharge. Objectives: This study aimed to determine the informational needs of families of patients discharged from Intensive Care Units (ICU), Kerman, southeast Iran. Methods: this study had a cross-sectional design. Families were selected using the information extracted from patients' medical records. One hundred forty family members of the ICU discharged patients participated in the survey using convenience sampling. Data collection tools were a validated researcher-made questionnaire about informational needs and a demographic characteristics form. Results: the mean score of family informational needs was 31.18 ± 3.97 out of 40. Most families required a high level of information in all dimensions. However, the maximum need was associated with self-care subscale (4.89 out of 5), and the minimum need was associated with defecation (3.13 out of 5). Conclusion: the families of patients discharged from intensive care units required much information about different areas of care particularly self-care. Health care providers, especially nurses, should be aware of the informational needs of the ICU patients' families post-discharge to provide better care.

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

Informational Gaps, Needs, and Preferences of Adults With Chronic Health Conditions and Their Family Caregivers

Objectives: The purpose of this cross-sectional, qualitative study was to determine unmet educational needs, preferences, and barriers experienced by individuals with chronic illness and their caregivers. Methods: A survey containing fixed-choice selections and open-ended questions was sent to persons with cancer and other chronic diseases who had been seen within a large national private health system. Results: Between 20% and 25% of participants had difficulty obtaining health care information and/or felt overwhelmed with managing their condition. Coping, managing symptoms, and making treatment decisions were areas of need in both patients and caregivers. Preferences for receiving information were diverse. Conclusion: Existing methods of communication including secure Web sites where patients can access their medical records posed significant challenges.

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

Information needs of patients with chronic diseases and their relatives for web-based advance care planning: a qualitative interview study

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.

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

Information Needs and Resources and Self-Management Challenges of Parents Caring for a Child with Asthma in China

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.

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

Informal carer's knowledge of traumatic brain injury questionnaire: Initial development and validation

Aim: To develop and psychometrically test the instrument for measuring the knowledge of traumatic brain injury of informal carers. Design Instrument development. Method: Focus group discussions were conducted among informal carers and healthcare specialists in March 2017. The content validity was determined by the mean of the item content validity index. A reliability test was performed by the Kuder‐Richardson 20 and Pearson's correlation coefficient among 40 informal carers of patients with a traumatic brain injury in the rehabilitation medicine department of a tertiary hospital from August–September 2017. Results: The final 34‐item questionnaire covers the nature of traumatic brain injury, the consequences of traumatic brain injury, the rehabilitation process, and the role of the caregiver. The item content means ranged from 0.8–1.00, and the difficulty of knowledge items ranged from 0.18–0.98. The internal consistency reliability and correlation coefficient were 0.70 and 0.84, respectively.

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

Informal caregivers’ preparation and administration of home hospice prescribed injectable subcutaneous drugs – a prospective observational pilot study

Introduction: Patients at the end-of-life often require subcutaneously administered medications. At present it is impossible for hospice home care nurses to prepare ampule drugs before each administration. Aim of the study: To assess the feasibility of the preparation and administration of these drugs in practice. Material and methods: The training was performed on 37, not previously instructed, adult informal caregivers. A written medical order from the authorial home medication template and the step-by-step drug preparation instruction were used. The percentage of persons who successfully passed the training self-performed the procedure properly directly after the education and a week later were assessed. We monitored the adverse events in drug preparation or administration and the number of both planned and intervention visits of the hospice team, external consultations, and hospitalisations within a week of observation. Results: The educated persons (typically close female relatives) described the procedure as easy to perform. All of them were able to prepare drugs properly and were confidently convinced of it, both directly after the training and after a week of practice. There were few local adverse events of subcutaneous injections. In one case an incorrect drug dose was noticed. Thirty-four patients remained under hospice home care until their death. Two hospice ward deaths were associated with the increasing dependency on incremental caregivers’ insufficiency, and one hospital death was linked to the rapid deterioration of the patient’s condition. Conclusions: The effective training of informal caregivers of hospice home care patients in the independent and safe preparation and administration of ampule drugs is feasible.

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

Inclusion of relatives in stroke rehabilitation: Perception of quality of services they received in the context of early supported discharged (ESD), in- and out-patient services

Background: Relatives of stroke patients should be an integral part of the continuum of rehabilitation services. Objectives: The objective was to describe their perception of the quality of the services they received in the context of early supported discharged (ESD), in- and out-patient rehabilitation services. Methods: Descriptive study using the Quality of Services Questionnaire for Relatives post-stroke (QSQR) completed online by relatives after the patient's discharge. It consists of 22 statements with respect to three subscales: 1) the training/instructions, 2) the information provision and 3) the organizational process of the service offer. Space is allowed for free comments and two open-ended questions. Quantitative data were analyzed descriptively, and we used a content analysis for qualitative data. Results: One-third (30/90; 33.3%) of the sample are composed of relatives aged 55 and under, with a majority (81%) of women and 51.3% of spouses. The training/instructions and information provision were perceived positively with a mean % agreement at 85.0 ± 29.6 and 84.8 ± 22.4, respectively. The mean % agreement was 91.4 ± 17.8 for the organizational process subscale. A significantly higher score (p = 0,03; Kruskal Wallis test) was found for out-patient services (n = 20) as compared to ESD (n = 29) or in-patient rehabilitation (n = 41). Qualitatively, a lack of involvement of relatives was mentioned as well as a lack of personalized information about stroke and its consequences and provision of resources available. However, communication between professionals, their availability, and their professionalism were appreciated. Conclusions: Despite quantitative high scores, qualitative data allowed the identification of concrete avenues for improvement to truly and systematically include relatives in stroke rehabilitation.

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

Improving Uptake of a National Web-Based Psychoeducational Workshop for Informal Caregivers of Veterans: Mixed Methods Implementation Evaluation

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.

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

Implementing a Reablement Intervention, "Care of People With Dementia in Their Environments (COPE)": A Hybrid Implementation-Effectiveness Study

Background and Objectives: The translation of reablement programs into practice is lagging despite strong evidence for interventions that maintain function for the person living with dementia as well as improve carer well-being. The aim was to evaluate the implementation of an evidence-based program, Care of People with Dementia in Their Environments (COPE), into health services. Research Design and Methods: An implementation-effectiveness hybrid design was used to evaluate implementation outcomes while simultaneously involving a pragmatic pre–post evaluation of outcomes for people with dementia. We report uptake, fidelity to intervention, outcomes for people living with dementia and carers, and beliefs and behaviors of interventionists contributing to successful implementation. Results: Seventeen organizations in Australia across 3 health contexts, 38 occupational therapists, and 17 nurses participated in training and implementation. While there were challenges and delays in implementation, most organizations were able to offer the program and utilized different models of funding. Overall, we found there was moderate fidelity to components of the program. Pre–post outcomes for carer well-being and coping (Perceived Change Index, p < .001) and activity engagement of the person living with dementia (p = .002) were significantly increased, replicating previous trial results. What contributed most to therapists implementing the program (Determinants of Implementation Behaviour Questionnaire) was a stronger intent to deliver (p < .001), higher confidence (p < .001), a sense of control in delivery (p = .004), and a belief the program was very useful to their clients (p = .002). Discussion and Implications: This study demonstrated that implementation is possible in multiple health systems and beneficial to individuals and their families.

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

The impacts of caregiving intensity on informal caregivers in Malaysia: findings from a national survey

Background: Provision of informal care may adversely affect health, daily and social activities of the informal caregivers, but few studies have examined these effects in relation to caregiving intensity. This study examined the predictive factors associated with the effects of caregiving roles on health, daily and social activities of informal caregivers, accounting for caregiving intensity. Methods: Data of adults aged 18 years and over from the National Health and Morbidity Survey 2019 were used. Respondent’s demographic, socioeconomic, health, and caregiving-related characteristics were described using complex samples analysis. Logistic regression analysis was performed to examine the factors affecting health, daily and social activities of caregivers, accounting for caregiving intensity. Results: Five point one percent of adults in Malaysia provided informal care. High intensity caregivers were more likely to be actively employed and provided longer duration of care compared with low intensity caregivers. For low intensity caregiving, females, those aged 35–59 years, and those with long-term condition were more likely to have negative effects on health. Daily activities of non-Malays were more likely to be affected, while no factor was found significantly associated with effect on social activities. For high intensity caregiving, caregivers aged 60 and over, those received training and those without assistance were more likely to have negative effects on health. Daily activities of those without assistance were more likely to be affected. Social activities of non-Malays, those received training and those providing care for 2 years or more were more likely to be affected. Conclusions: Our study indicates that both low- and high-intensity caregivers have common features, with the exception of employment status and care duration. Caregiving, regardless of intensity, has a significant impact on caregivers. In order to reduce the negative consequences of caregiving responsibilities, all caregivers need assistance from the community and government, that is customised to their needs. By addressing the factors contributing to the negative effects of caregiving, a continuation of informal caregiving can be sustained through policies supporting the growing demand for informal care necessitated by an ageing population and higher life expectancy in Malaysia.

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

The impact of psychoeducational interventions on the outcomes of caregivers of patients with heart failure: A systematic review and meta-analysis

Background: Heart failure is a global health care problem that causes a significant economic burden. Despite medical advancements, it's prognosis remains poor as many patients with heart failure experience symptoms that negatively impact Quality of Life. Caregivers are often responsible for helping and supporting family members manage their heart failure symptoms at home. In addition to managing their own medical problems and maintaining social and personal lives, significant burden and stress can occur. At present, caregivers receive little guidance or information to support them in their caregiving role. Objectives: This review aims to determine the impact of psychoeducational interventions on the outcomes of caregivers of patients with heart failure. Design: Systematic review and meta-analysis. Data source Five electronic databases: PsycINFO, Medline, CINAHL Plus, EMBASE and SCOPUS were searched from June 2007 to August 2019. Review methods The conduct and reporting of this review was based on the Cochrane Handbook for Systematic Reviews of Interventions and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. The Cochrane Risk of Bias Tool was used to assess the risk of bias amongst randomised controlled trials, and the Newcastle Ottawa Scale was used to assess risk of bias in one quasi-experimental study. Results: Ten articles met the inclusion criteria, consisting of seven studies, with a total sample size of 953 participants. The pooled result from two studies, conducted in America and China, reported that psychoeducational interventions significantly reduced depression at six months' follow-up (SMD -0.82; 95% CI -1.17 to -0.47; p = 0.73, I2 =0%). The pooled result from two studies conducted in Sweden and Taiwan showed a significant improvement in heart failure knowledge at six months' follow-up (SMD 0.97; 95% CI 0.70 to 1,25; p < 0.00001, I2 =0%). Finally, pooled results from three studies conducted in Sweden, China and Taiwan found a significant improvement in Quality of Life at 3 months' follow- up (SMD 0.25; 95% CI 0.25 to 0.48; p = 0.03). The three most common intervention components included: group based educational sessions, telemonitoring and telephone support, and written resources. Conclusions: There was no specific type of psychoeducational intervention found to have a significant impact on caregiver outcomes, as interventions were heterogeneous consisting of multiple components. Further research is needed to determine the effectiveness of individual and combined components to identify the ideal intervention format and design for caregivers of patients with heart failure.

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

eTRIO trial: study protocol of a randomised controlled trial of online education modules to facilitate effective family caregiver involvement in oncology

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.

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

Home and Parent Training Strategies for Pediatric Feeding Disorders: The Caregivers’ Perspective

Background: Twenty to 45% of the general pediatric population experience feeding problems. When children with disabilities exhibit feeding problems, they are more likely to develop maladaptive mealtime behaviors that may lead to poor nutrition. Home training to help treat a child’s feeding delay or disorder is a vital component of feeding treatment and supports holistic, family-centered treatment models. It is important for occupational therapists working with this population to understand the impact of these behaviors on individual and family functioning. Method: This quantitative study examined caregivers’ perspectives of the training families receive to support their child’s feeding delay or disorder, and how family mealtimes may be affected. One hundred and eight participants completed an online survey using primarily Likert scale questions. Results: Caregivers report that (a) they are receiving current and evidenced-based interventions; (b) they feel supported, yet feel they need more support; (c) family relationships are adversely affected by a child’s feeding challenges; (d) caregivers desire to connect with other caregivers of children with feeding delays or disorders; and (e) they need stress management and coping strategies. Conclusion: Feeding treatment is strengthened with more family-focused topics like family relationships and interactions, caregiver burden and stress management, and increased caregiver support.

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

Governing families that care for a sick relative: the contributions of Donzelot’s theory for nursing

According to the literature, the family is now considered to be the most important resource for the care and support of a sick family member. Families are being increasingly invited and trained to play a utilitarian role, not just as family caregivers, but as healthcare agents. Healthcare institutions, based on neoliberal health policies, are encouraging them to perform increasingly complex and professionalized tasks. The burden associated with this expanded healthcare function, however, is significant (fatigue, emotional distress and exhaustion). The aim of this article was to present French sociologist Jacques Donzelot's theoretical perspective on governing through the family. According to Donzelot, such a government is exercised through various power techniques, including the instrumentalization of the family role and the transfer to families of the responsibility for health care. This author describes how healthcare institutions call on the family to perform hospital and biomedical practices within the home. A spin‐off of neoliberalism, the practices of governing through families specifically target women, who are considered to be the pillar of the family. Donzelot's perspective is very relevant to nursing, but is still rarely mobilized in the discipline. His critical perspective allows for a re‐reading of relations of power and mechanisms of surveillance and control of families, issues that are often overlooked in nursing research.

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

Going inside the relationship between caregiver and care‐receiver with Amyotrophic Lateral Sclerosis in Italy, a Grounded Theory study

Background: People with amyotrophic lateral sclerosis become dependent on caregivers for daily activities and to perform self‐care activities at home. The family caregiver has an important role in the care. The patient decides and controls care but depends on the caregiver to implement self‐care behaviours. The quality of caregiver–patient relationships could influence clinical outcomes, as it occurs in other illnesses, so the aim of this study was to investigate the relationship between the Amyotrophic Lateral Sclerosis patients and their family caregiver and how it impacts care, and patient and caregiver outcomes. Methods: We interviewed 22 patients/caregivers in a Neuromuscular Clinical Center in the South of Europe, between July and October 2018. A Grounded Theory approach was used, comprising line by line 'initial coding', memos writing, 'focused coding', advanced memos and categories definition. Findings: From the interviews three main categories emerged: 'reciprocity', 'loving to care' and 'changing to care' and four secondary categories: 'having support', 'sharing suffering', 'protecting each other' and 'thinking positive'. A stable and calm relationship between patient and caregiver, characterised by reciprocity, mutual help and affection affected patient self‐care provided at home and the caregiver burden. The concept of mutuality seems to describe this relationship, despite the patient's dependence on the caregiver. The relationship with health professionals and educational interventions could influence the quality of the relationship. Conclusions: Further studies are needed to describe the quality of the relationship in this dyad, to investigate the presence of mutuality and how it affects patient and caregiver outcomes.

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

Gaining Experience Over Time: The Family Caregivers' Perception of Patients with a Tracheostomy in Home Care

Background: The transition of tracheostomy patients to the home poses many challenges for both the patient and the family. Identifying and understanding the experiences of family caregivers pave the road for discovering and meeting care needs. This study has been aimed to explain the experiences of family caregivers of patients with a tracheostomy about patient care at home. Materials and Methods: This qualitative study was conducted using a conventional content analysis approach from September 2018 to January 2019. Participants included nine family caregivers and one professional caregiver who were selected through purposive sampling method. The in-depth interviews were conducted at home or in health centers using field notes. Data were recorded manually and analyzed using the five-step method proposed by Granehim and Lundman. Results: The data led to the emergence of 1591 initial codes, 23 subcategories, and 6 categories. Categories include the need for training, the need for receiving care support, care challenges, care burden, gaining experience, hope, and inner satisfaction. Conclusions: In this study, the family caregivers faced with lots of challenges in caring patients with tracheostomy so that they were in needs of training and support from professionals. Although they got skillful in care and endure burden, they were so hopeful and satisfied with their attempts. Hence, there is a need for official nongovernmental organizations with the aim of maintaining care and protecting their families. 

 

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

From Syringe to Spoon Feeding: A Case Report of How Occupational Therapy Treatment Successfully Guided the Parents of a Child with Autism Spectrum Disorder and Prematurity in an Outpatient Clinic

This case report details how occupational therapy treatment in an outpatient setting successfully guided the parents of a child with autism spectrum disorder and a history of prematurity from restrained syringe feedings to the acceptance of spoon feedings. Occupational therapy practitioners are qualified, needed and available to assess and treat feeding disorders in children with autism spectrum disorder and a history of prematurity. Family-centered practice must be utilized for successful outcomes in an outpatient service delivery model.

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

FOCUS Program: Treating patients with cancer and family caregivers as a unit of care

Background: Studies indicate that patients' and caregivers' responses to illness are interdependent; each person affects the other. Existing evidence reinforces the need to recognize family caregivers as equal recipients of care and support. Objectives: This evidence-based pilot study evaluated the feasibility and preliminary efficacy of the nurse-guided, psychoeducational, familybased FOCUS program intervention at a local oncology outpatient clinic. Methods: 30 patient-caregiver dyads were recruited from a local oncology clinic. Intervention delivery occurred using home visits and telephone calls. Self-administered questionnaires were used to assess participants' self-efficacy, quality of life (QOL), and coping pre- and postintervention, and intervention satisfaction postintervention. Three tailored psychosocial education sessions were held during a 6- to 9-week period. Findings: Significant changes in outcomes were found, including increased self-efficacy in both patients and caregivers, higher QOL in caregivers, and decreased use of substances for coping in patients. There was a trend for patients' emotional well-being to improve over time; other aspects of QOL showed little change. There were no significant changes in caregivers' coping.

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

Family Psychoeducation as an Intervention Tool in the Management of Schizophrenia and the Psychological Wellbeing of Caregivers

Background: Caregivers need to be imparted with specialized skills to retain their psychological well-being and to manage the patient with schizophrenia effectively. Aim: This study aims to understand the role of family psychoeducation (FPE) in the management of schizophrenia and the well-being of caregiver. Materials and Methods: The sample included 40 caregivers and patients, 20 each assigned randomly in treatment group (psychoeducation given) and the control group. Pre and post assessment of psychological wellbeing (PWB), symptoms of the patient, and emotional regulation was done through the scales mentioned in the study and analyzed through analysis of variance. Results: Statistically significant improvement in emotional regulation of caregivers and patient (P = 0.05) and improvement of PWB in caregivers (P = 0.01) as well as significant reduction in symptoms of patients (P = 0.01) found in the treatment group. Conclusion: FPE was found to be effective in improving PWB of caregivers and effective management of a patient with schizophrenia.

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

Family physician’s and primary care team’s perspectives on supporting family caregivers in primary care networks

Background: Research, practice, and policy have focused on educating family caregivers to sustain care but failed to equip healthcare providers to effectively support family caregivers. Family physicians are well-positioned to care for family caregivers. Methods: We adopted an interpretive description design to explore family physicians and primary care team members’ perceptions of their current and recommended practices for supporting family caregivers. We conducted focus groups with family physicians and their primary care team members. Results: Ten physicians and 42 team members participated. We identified three major themes. “Family physicians and primary care teams can be a valuable source of support for family caregivers” highlighted these primary care team members’ broad recognition of the need to support family caregiver’s health. “What stands in the way” spoke to the barriers in current practices that precluded supporting family caregivers. Primary care teams recommended, “A structured approach may be a way forward.” Conclusion: A plethora of research and policy documents recommend proactive, consistent support for family caregivers, yet comprehensive caregiver support policy remains elusive. The continuity of care makes primary care an ideal setting to support family caregivers. Now policy-makers must develop consistent protocols to assess, and care for family caregivers in primary care. 

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

Family perspectives on the acceptability and usefulness of the FAB Positive Behaviour Support program: A pilot study

Purpose: This pilot feasibility study aimed to gain preliminary insight into the acceptability and usefulness of the FAB-PBS program for providing behavior support to families following acquired brain injury (ABI) in community settings. Background: The FAB-PBS program is based on a Positive Behavior Support (PBS) framework and principles of Family-Centered Care and Family-Directed Intervention. It consists of an education phase followed by individualized sessions during which the family is supported to develop and implement a PBS plan. Methods: A mixed-methods design was utilized, with feedback obtained from family members via short questionnaires and semi-structured interviews post education phase and individualized sessions, and at three-month follow up. Results: Two family members completed the full FAB-PBS program and reported high satisfaction with the program and increased confidence in providing behavior support. Findings also suggested an increase in desired behaviors and a decrease in challenging behaviors presented by family members with ABI. Conclusions: The FAB-PBS program may be an acceptable and feasible approach to increasing the capability of family caregivers in providing behavior support following ABI. Further pilot testing is required to inform the development of a larger feasibility study. 

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

Family knowledge about the legal rights of children and adolescents with cancer

Objective: Identify the knowledge of family members of children and adolescents with cancer about their legal rights, difficulties, and concessions to ensure them. Methods: Quantitative study, survey type, of intersectional design. A questionnaire drawn up by the researchers was applied in order to characterize the minor and their family and also to identify the family's knowledge about legal rights. Descriptive statistics were used to analyze data. Results: 61 family members who participated know some more rights to the detriment of others and are especially motivated to search for information when negative impacts on the financial life increase, with repercussions beyond family health. Conclusion: the studied population requires more information and demands knowledge about some rights guaranteed by law. Guidance on rights empowers the family and guarantees the necessary care, searching to have an intersectoral action qualify care and assist in restructuring family dynamics to deal with chronic conditions.

 

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

Family caregivers' experiences of interaction with people with mild‐to‐moderate dementia in China: A qualitative study

Aim: This study aimed to explore the experiences of family caregivers interacting with people with dementia. Background: A majority of people with mild‐to‐moderate dementia live at home with family caregivers. This interaction creates positive experiences and challenges for these caregivers. Design: Descriptive phenomenological qualitative inquiry guided this study. Methods: This qualitative study involved semi‐structured interviews with the caregivers of people with mild‐to‐moderate dementia (n = 10). Data were collected from June to September 2018, and then data were thematically analysed. Results: Six categories of themes were identified from the interviews: (1) unexpected things often happen; (2) positive coping strategies; (3) sense of accomplishment because people with dementia actively participate in activities; (4) sense of frustration because of the reluctance of people with dementia to participate in activities; (5) hope for the happiness of people with dementia; and (6) want to have their own life. Conclusions: This study reveals that caregivers could positively interact with people with dementia through creating opportunities and arranging meaningful activities. Future research should focus on family management and training on how to help caregivers interact effectively with people with dementia. 

 

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

Family Caregiver Support of Patient Self-Management During Chronic, Life-Limiting Illness: A Qualitative Metasynthesis

Background: Family caregivers play an integral role in supporting patient self-management, yet how they perform this role is unclear. We conducted a qualitative metasynthesis of family caregivers' processes to support patient self-management of chronic, life-limiting illness and factors affecting their support. Methods: Methods included a systematic literature search, quality appraisal of articles, data abstraction, and data synthesis to produce novel themes. Results: Thirty articles met inclusion criteria, representing 935 international family caregivers aged 18 to 89 years caring for patients with various health conditions. Three themes characterized family caregivers' processes to support patient self-management: "Focusing on the Patient's Illness Needs," "Activating Resources to Support Oneself as the Family Caregiver," and "Supporting a Patient Living with a Chronic, Life-Limiting Illness." Factors affecting family caregivers' support included Personal Characteristics, Health Status, Resources, Environmental Characteristics, and the Health Care System. Conclusions: The family caregiver role in supporting patient self-management is multidimensional, encompassing three processes of care and influenced by multiple factors.

Access source material through DOI

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

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

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

A family care model for older persons with hip-fracture and cognitive impairment: A randomized controlled trial

Background: Dementia and hip fracture are both associated with substantial disability and mortality. However, few studies have explored the effects of intervention programs on post-operative recovery of older persons with hip fracture and cognitive impairment. To examine the effects of a family-centered care model for older persons with hip fracture and cognitive impairment and their family caregivers. Methods: Single-blinded clinical trial. A 3000-bed medical center in Taiwan. Older persons hip fracture and cognitive impairment (N = 152); 76 in the intervention group, and 76 in the usual-care control group. A family-centered care model consisting of geriatric assessment, discharge planning, in-home rehabilitation, and family caregiver-training for dementia care. Outcomes were assessed 1-, 3-, 6- and 12-months following hospital discharge for older persons with hip fracture and cognitive impairment. Assessed outcomes were self-care ability (performance of activities of daily living and instrumental activities of daily living), nutritional status, self-rated health, health-related quality of life and self-efficacy, and competence of the family caregivers. Results: Relative to patients who received usual care, those who received the family-centered care intervention had a greater rate of improvement in self-rated health (β = 1.68, p <.05) and nutritional status (β = 0.23, p <.05), especially during the first 6 months following hospital discharge. Relative to family caregivers who received usual care, those who received family-centered care had a higher level of competence (β = 7.97, p <.01), a greater rate of improvement in competence (β = 0.57, p <.01), and a greater rate of improvement in self-efficacy (β = 0.74, p <.05) 3 months following hospital discharge. Conclusions: A family-centered care model enhanced family caregivers' self-efficacy and competence but did not improve the physical recovery of the participants with hip fracture and dementia. We suggest adding an educational component to include geriatric assessment, discharge planning, in-home rehabilitation, and family caregiver-training for dementia care and assessing family caregiver outcomes in interventions for older persons with hip fracture and cognitive impairment. Trial registration: Registered with www.clinicaltrials.gov (NCT03894709) 

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

Factors associated with informal caregiving and its effects on health, work, and social activities of adult informal caregivers in Malaysia: findings from the National Health and Morbidity Survey 2019

Background: The increase in the elderly population, chronic and degenerative diseases, as well as accidents at work and on the road in Malaysia would result in an increased demand for informal care. This paper aimed to determine the associated factors of informal caregiving and its effects on health, work and social activities of adult informal caregivers in Malaysia. Methods: The data from the 2019 National Health and Morbidity Survey (NHMS), a nationwide cross-sectional survey with a two-stage stratified random sampling design, was used in this research. The study included respondents who were 18 years and older (n = 11,674). Data were obtained via face-to-face interviews using validated questionnaires. Descriptive and complex sample logistic regression analyses were employed as appropriate. Results: 5.7% of the adult population were informal caregivers. Provision of informal care were significantly associated with the female sex (OR = 1.52, 95% CI [1.21, 1.92]), those aged 36–59 years (OR = 1.61, 95% CI [1.15, 2.25]), and those who reported illness in the past 2 weeks (OR = 1.79, 95% CI [1.38, 2.33]). The risk of having their health affected were associated with female caregivers (OR = 3.63, 95% CI [1.73, 7.61]), those who received training (OR = 2.10, 95% CI [1.10, 4.00]) and those who provided care for 2 years or more (OR = 1.91, 95% CI [1.08, 3.37]). The factors associated with the effects on work were ethnicity, received training and had no assistance to provide the care. In terms of effect on social activities, female caregivers (OR = 1.96, 95% CI [1.04, 3.69]) and caregivers who received training were more likely (OR = 2.19, 95% CI [1.22, 3.93]) to have their social activities affected. Conclusion: Our study revealed that sex, age, and self-reported illness were factors associated with being an informal caregiver in Malaysia. Informal caregivers faced effects on their health, work, and social activities which may be detrimental to their well-being. This understanding is crucial for planning support for caregivers.

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

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

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

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

Exploring the experiences of family caregivers with people with drug-resistant tuberculosis

Background: The South African health system faces major challenges: crumbling infrastructure, shortage of beds and health professionals, and a high burden of diseases such as Tuberculosis and HIV/AIDS. The emergence of Drug Resistant Tuberculosis has made matters worse, as some of the burden of care for patients was transferred from nurses at hospitals to families in communities after patient discharge. Objective: This study explores and describes experiences of family caregivers caring for family members with Drug Resistant Tuberculosis living at home. Methods: The data from purposively selected family caregivers, caring for family members living with Drug Resistant Tuberculosis, were collected through in-depth interviews using a pretested interview guide. Saturation was reached at the 11th interview. All interviews were audio-taped, transcribed verbatim, analysed using Tech’s Eight Steps for Data Analysis, and emerging themes reported. Findings: Three themes that emerged were: issues in relation to provision of care, caregiver’s attitudes towards caregiving, and community attitudes and practices towards family caregivers. The study showed that respondents experienced challenges such as buying and preparing of nutritious food, attending to hygiene needs and management of treatment of side effects. Poverty, finance and time were barriers to caregiving roles. Participants experienced physical and psychological exhaustion, social exclusion, and stigmatisation. Conclusions: There is a need to increase coverage of the Ward-Based Outreach Teams and Community Healthcare Workers, and intensification of TB and HIV/AIDS health education in communities. Training and education on infection control, palliative treatment, and home-based medical care should be provided to families before a patient is discharged. Stakeholder relations need to be improved and collaboration fostered. 

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

Evaluation of AID-COM, a communication-focused program for family carers of people with early-stage Alzheimer's disease: A pilot study (innovative practice)

Background: Families providing care to relatives with Alzheimer's disease are quickly destabilized by changes that disrupt communication. Methods: This pilot mixed-design study aimed to provide a quantitative and qualitative evaluation of a communication-based training program for carers of people with early-stage Alzheimer's disease. Five participants received three training sessions. The use of communication strategies by participants and their effectiveness were evaluated before and after the training, and a focus group was conducted to gather participants' impressions about the impacts of the training on communication with the person they cared for. Conclusions: The AID-COM (AID for COMmunication) program appears to have met expectations.

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

Evaluating the effectiveness of the Family Connections program for caregivers of youth with mental health challenges, part II: A qualitative analysis

Background: The Family Connections™ (FC) program is a 12‐week support and skill‐training program for caregivers of youth with mental health challenges. The intervention was originally developed with a focus on borderline personality disorder (BPD). It is important to understand the experiences of caregivers in such interventions, as well as its applicability beyond BPD, for the purposes of evaluation and ongoing program improvement. Objective: To explore and analyse the experiences of caregivers of youth with diverse mental health challenges and who participated in FC. Design: Semi‐structured interviews with thirteen FC‐participating caregivers of youth with mental health challenges. Results: Thematic analysis uncovered three major themes regarding caregivers' experience with FC: (a) FC increased the caregivers' ability to manage their youth's mental health challenges; (b) participating in FC impacted their intra‐ and interpersonal spheres; and (c) improvements to the program were proposed. Following participation in FC, caregivers felt they learned a new approach to understanding themselves, their youth and mental health, and were better able to manage their youth's mental health challenges. Discussion and conclusion: FC is a promising intervention for caregivers of youth with mental health challenges, beyond the traditional BPD focus. The intervention has the potential to provide broad‐based benefits for caregivers and should be considered for implementation and scale‐up across youth‐ and caregiver‐serving organizations. Potential areas of intervention flexibility and improvement are discussed. Patient/public contribution: Caregivers were involved in the program development and facilitation of FC. A person with lived experience was involved with the analysis.

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

Evaluating the effectiveness of the Family Connections program for caregivers of youth with mental health challenges, part I: A quantitative analysis

Introduction: Caregivers of youth with mental health (MH) challenges are often faced with complex problems in relation to caring for their youth. Family Connections™ (FC) is a 12‐week skills training program for families of individuals with MH challenges, developed originally for Borderline Personality Disorder. Research is needed to examine the effectiveness of FC for caregivers of youth with diverse MH challenges. Objective: To examine the effectiveness of FC for caregivers of youth with MH challenges. Methods: A total of 94 caregivers of youth with MH challenges participated in FC, across three sites in Ontario, Canada. Assessments occurred at baseline, 6 weeks, 12 weeks and follow‐up. Primary outcomes include the Burden Assessment Scale and The Stress Index for Parents of Adolescents. Secondary outcomes included the caregiver's report of child behaviour, affect, mastery, coping and grief. Linear mixed model analyses were conducted, where time and the time × site interaction were defined as the fixed effects. Results: Statistically significant improvements over time were observed across outcome measures, including caregiver burden, grief, coping, and other measures. The time × site interaction was only significant for burden (P = .005). Conclusion: This study demonstrates the effectiveness of FC for caregivers of youth with MH challenges. Future research should focus on differences across geographical sites and facilitation models. Patient or public contribution: Caregivers were involved in the facilitation of FC. A person with lived experience was involved in analysing the data, reporting the results, and drafting the manuscript.

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

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

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

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

Empowering Families to Take on a Primary Caregiver Role for Patients with Cancer in India: Promising Strategies, Persistent Challenges, and Tradeoffs (SCI928)

Objectives: 1. Identify the challenges and trade-offs for family members assuming a primary caregiving role to patients with cancer nearing the end of life in India. 2. Consider strategies for supporting family members assuming a primary palliative caregiving role in India. Background As the population on the Indian subcontinent is aging, so too is the incidence of cancer and the need for access to palliative care. Research Objectives Identify provider perspectives on empowering patient family members to assume a palliative caregiving role. Methods: This is a secondary analysis from the PC-PAICE (Palliative Care- Promoting Access & International Cancer Experience) study where we captured the perspectives of 44 interdisciplinary providers from 7 geographically diverse palliative care sites throughout India using a semi-structured interview guide. We identified emergent themes using qualitative content analysis methods with team consensus. Results: Theme 1: Challenge: Cultural beliefs exist that handing off or sharing any primary caregiving is a "sin" and "if they don't take care of the patient then they have done some mistake." Theme 2: Trade-off: Caregivers are overwhelmed with navigating the expectation to take on the caregiver role, when they feasibly cannot, given financial and time constraints. Theme 3: Strategies: Facilitate caregiver buy-in to the idea of palliative care includes linking caregivers to financial resources (e.g. NGO sponsored income-earning opportunities "conduct rehabilitation camps where they teach the patient or the family to make some products"), connecting caregivers to mental health support, and working with caregivers in accommodating other constraints. Conclusion: In India, family members are already primed with the expectation to assume the role of palliative caregiver; this expectation in the face of financial constraints creates a challenging situation for caregivers. Implications for Research, Policy, or Practice: Striking the right balance of what family caregivers in India take on requires acknowledging the trade-offs they might make in other parts of their lives, empowering them through training and linkage to resources, and facilitating a cultural shift to accept palliative care or help from others. Future work should explore these provider themes in interviews with caregivers and patients themselves.

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

Effects of family participatory dignity therapy on the psychological well-being and family function of patients with haematologic malignancies and their family caregivers: A randomised controlled trial

Background: Strong family ties appear to buffer patient's and family members' difficult experiences during life and health crises. The family participatory dignity therapy programme, a patient-family-centred psychological intervention, was developed based on dignity therapy and performed by one therapist in the form of interview according to a specific question prompt. This study aimed to confirm the efficacy of the family participatory dignity therapy programme in improving the psychological well-being and family cohesion and adaptability of patients with haematologic malignancies and their family caregivers. Method: A single-blinded, two-arm parallel group, randomised controlled trial was conducted. Participants: Participants were patient-family caregiver dyads recruited from Fujian Medical University Union Hospital from March to September 2019. A total of 68 eligible dyads agreed to participate and were randomly assigned to the intervention group (n = 33) or control group receiving usual care (n = 35). Each pair of patient-family dyads in the intervention group received two or three interviews (each interview approximately lasting 45 to 60 min) performed by one therapist according to a specific question prompt containing 10 questions for patients and 10 corresponding questions for their family caregivers. To evaluate the effects of the intervention, we assessed patients' hope, spiritual well-being, and family cohesion and adaptability, as well as their family caregivers' depression, anxiety, and family cohesion and adaptability at baseline (T0), 1 week (T1), 4 weeks (T2), and 8 weeks post-intervention (T3) and compared the scores between the groups. A two-way repeated-measures analysis of variance was conducted to examine the effects of time, group, and their interaction. Results: For patients, there was a significant difference in hope (p = 0.001), spiritual well-being (p = 0.002), and family cohesion (p <0.001) and adaptability (p <0.001) between the intervention and control groups. The difference over time was also significant in family cohesion (p = 0.018) and adaptability (p = 0.003). The interaction effects were significant for hope (p = 0.034), spiritual well-being (p <0.001), and family cohesion (p <0.001) and adaptability (p <0.001). For family caregivers, there was a significant difference in anxiety (p = 0.037), depression (p = 0.001), and family adaptability (p = 0.036) between the intervention and control groups. Within groups, a significant difference in family adaptability (p = 0.012) was found. Moreover, the interaction effects were significant on anxiety (p = 0.001) and family cohesion (p = 0.038). Conclusions: The family participatory dignity therapy programme showed a positive effect on promoting patients' hope, spiritual well-being, and family cohesion and adaptability; amongst family caregivers, it decreased anxiety and depression, and enhanced family cohesion and adaptability. 

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

Effects of an educational peer-group intervention on knowledge about dementia among family caregivers with a Turkish or Moroccan immigrant background: A cluster randomised controlled trial

Objective: The aim of this paper is to examine the effects of an educational peer-group intervention on knowledge about dementia, perceived ability to talk about it, received support and self-perceived pressure from informal care among family caregivers with a Turkish or Moroccan immigrant background who cared for a person with dementia. Methods: This paper is based on a cluster randomised controlled trial with three measures, including participants who knew or cared for a person with dementia. For the purpose of this study, a selection was made of participants who cared for a person with dementia. Knowledge about dementia, perceived ability to talk about dementia, support received and self-perceived pressure from informal care were assessed inthe intervention and the control condition. Multi-level analyses were conducted to examine the effects. Results: Data for 386 participants was analysed. Improvement in knowledge about dementia over time was significantly greater in the intervention condition than in the control condition. In the intervention condition, there was also a significant increase over time in the support received from home-care staff, which was not found in the control condition. No effects were found on other types of support received, the ability to talk about dementia or the self-perceived pressure from informal care. Conclusion: Offering a culturally sensitive educational peer-group education intervention enhances knowledge about dementia and has a small but positive effect on the support received from home-care staff in these groups. Practice Implications: Offering peer-group-based education about dementia to family caregivers with Turkish or Moroccan immigrant backgrounds is important for multicultural dementia care. 

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

The effects of a psychosocial support program on perceived stress of family caregivers of patients with mental disorders

Background: Taking caring of patients with mental disorders is stressful and people who take care of these patients need to receive enough support and training to overcome this challenging situation. The present study was aimed at investigating the effects of a psychosocial support program on perceived stress of family caregivers of patients with mental disorders. Materials and Methods: This randomized controlled clinical trial was performed on 64 family caregivers of patients with mental disorders referred to Noor and Hazrat-e-Ali Asghar hospital in Isfahan, Iran, in 2018-19. The participants were randomly assigned to the intervention and control groups using a random number table. In the intervention group, the training program was held in 6 sessions of 90-minute training classes twice a week. Data were collected using a demographic characteristics form and the Perceived Stress Scale (PSS) before, immediately after, and 1 month after the intervention. Descriptive and inferential statistical tests such as Chi-square, Mann-Whitney, independent t-test, repeated measures ANOVA, and Kolmogorov-Smirnov test were used to analyze the data in SPSS software. Results: The result of the study showed that the total mean score of perceived stress in the intervention group was significantly less than the control group immediately after (F2=66.29, p<0.001) and 1 month after the intervention (F2=66.29, p<0.001). Conclusions: Delivering a training program on the different dimensions of support family caregivers need will reduce the perceived stress of family caregivers of patients with mental disorders. Therefore, the implementation of this intervention is recommended in this group of caregivers. 

 

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

The effects of a multidisciplinary supportive program on caregiver burden among the family caregivers of patients with advanced chronic obstructive pulmonary disease: A randomized controlled field trial

Background & Objective: The family caregivers of patients with chronic obstructive pulmonary disease (COPD) experience heavy caregiver burden (CB). This study investigated the effects of a multidisciplinary supportive program on CB in the family caregivers of patients with advanced COPD. Materials & Methods: This randomized field trial was conducted in the pulmonary subspecialty clinic of Birjand University of Medical Sciences, in 2019. In the present study, 92 eligible family caregivers of COPD patients were randomly allocated into intervention and control groups. The study intervention included eight sessions. Three educational sessions on COPD were held by a pulmonary disease specialist and an experienced nurse in COPD care, two educational sessions were held on coping strategies by a psychiatric nurse and three peer support sessions. CB was assessed before, immediately after and two months after the study intervention. SPSS (v. 21.0) was used for data analysis. Results: CB significantly decreased in the intervention group (P=0.01). It did not change significantly in the control group (P=0.63). Between-group differences, with respect to the mean score of CB at the baseline (P=0.66) and the first posttest (P=0.72) were not significant. The mean score of CB in the second posttest was significantly lower in the intervention group, compared to the control group (P=0.007). Conclusion: Multidisciplinary supportive program is effective in reducing CB among the family caregivers of patients with advanced COPD. © 2021, This is an original open-access.

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

The effectiveness of ROM (Range of Motion) mobilization education on informal caregivers of stroke patients in the inpatient room

Introduction: Stroke is a neurologically deficit acute disease attributable to a focal vascular cause and is one of the leading causes of disability and death. Disability caused by stroke has a major impact on the family members as their formal caregivers, who in turn have to provide the treatment and care with sufficient knowledge. The purpose of this study was to determine the effectiveness of education on ROM (Range of Motion) mobilization techniques to the informal caregivers on stroke patients in the care room of RUSD Dr. Soekardjo, Tasikmalaya. Methods: This is a quantitative study and analysis was carried out using non parametric Wilcoxon tTest. The total sample for this study was 27 respondents and were selected by convenience technique. Result: The result revealed a significant difference in the mean value on the study of ROM mobilization education on caregivers before and after the intervention (p-value<0.05). Conclusion: Family caregivers should seek more information on managing stroke using mainly non-pharmacological components on stroke patients in order to minimize stroke reoccurrence and also to prevent further complications. 

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

Effectiveness of dyadic psychoeducational intervention for stroke survivors and family caregivers on functional and psychosocial health: A systematic review and meta-analysis

Objectives: Stroke is the third leading cause of disability worldwide, influencing the whole family's health and well-being. Dyadic (i.e., stroke survivor and family caregiver) psychoeducational intervention is a potential alternative to disease management and support, targeting at the dyads of stroke survivors and their caregivers as active participants in partnership. This review aimed to evaluate the current evidence on supporting the dyadic psychoeducational intervention for the functional and psychosocial health of stroke survivors' and their family caregivers. Design: Systematic review and meta-analysis Data sources: Nine English databases (Cochrane Library, Medline, CINAHL, PsycINFO, EMBASE, British Nursing Index, PubMed, Web of Science and Digital Dissertation Consortium) and two Chinese databases (CNKI and Wanfang) were searched to identify eligible studies published from their inception to April 2020. Additional relevant studies were identified from the reference lists and bibliographies of the identified articles and a manual search of relevant journals. Review methods: Studies were searched using keywords based on the 'PICOS' framework. The eligibility of individual full-text articles was independently assessed by two reviewers in accordance with the selection criteria. The risk of bias of the included studies was assessed using Cochrane RoB 2.0. The main outcomes were subjected to meta-analysis whenever possible; otherwise, narrative syntheses were conducted. Results: Eleven studies with 1769 stroke survivors and 1578 family caregivers were identified. The meta-analysis of pooled data suggested that the dyadic psychoeducational intervention had a significant immediate (<1 month) effect on family caregivers' burden (SMD = −0.25, 95% CI: −0.50 to −0.01, p = 0.04) and a long-term (≥6 months) effect on survivors' quality of life (SMD = −0.30, 95% CI: −0.53 to −0.07, p = 0.01). Subgroup pooled analyses indicated that the interventions initiated in hospitals could significantly improve the survivors' functional independence immediately after intervention (SMD = 0.40, 95% CI: 0.08 to 0.72, p = 0.01). Conversely, the interventions initiated at home did not significantly affect this functional outcome. Conclusions: This review supports the notion that the dyadic psychoeducational intervention can be effective in improving the stroke survivors' functional independence and their family caregivers' burden for a short period and the survivors' quality of life in the long run. However, its effectiveness is not conclusive because other psychosocial health outcomes for the stroke survivors and their family caregivers have not yet been found to significantly improve after intervention. Therefore, further large-scale randomised controlled trials with a high-quality design are warranted to evaluate their effectiveness in diverse functional and psychosocial health outcomes for stroke survivors and their family caregivers.

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

Effectiveness of an integrated multidisciplinary geriatric rehabilitation programme for older persons with stroke: a multicentre randomised controlled trial

Background: Almost half of the stroke patients admitted to geriatric rehabilitation has persisting problems after discharge. Currently, there is no evidence based geriatric rehabilitation programme available for older stroke patients, combining inpatient rehabilitation with adequate ambulatory aftercare in the community. Therefore, we developed an integrated multidisciplinary rehabilitation programme that includes aftercare for older persons with stroke. We evaluated the effectiveness of this newly developed rehabilitation programme in comparison to usual care. Methods: A multicentre randomised controlled trial was conducted in eight geriatric rehabilitation stroke units and their collaborating partners in primary care. The study population involved stroke patients and their informal caregivers who were aged 65 or over, living in the community before admission to geriatric rehabilitation, and expected to be able to return home after discharge. The programme consisted of three modules: inpatient neurorehabilitation, home-based self-management training, and stroke education. For patients, daily activity (FAI) was assessed as primary outcome and functional dependence (Katz-15), perceived quality of life (SSQoL) and social participation (IPA) as secondary outcomes. Additionally, among informal caregivers perceived care burden (self-rated burden VAS), objective care burden (Erasmus iBMG), and quality of life (CarerQol), were assessed as secondary outcomes. Results: In total 190 patients and 172 informal caregivers were included. Mean age of the patients in the intervention group was 78.9 years (SD = 7.0) and in the usual care group 79.0 years (SD = 6.5). Significant favourable effects for the programme were observed for the subscale autonomy outdoors of the IPA (− 2.15, P = .047, and for the informal caregivers perceived care burden (1.23, P = .048. For the primary outcome daily activity and the other secondary outcomes, no significant effects were observed. Conclusion: The integrated multidisciplinary programme had no effect on daily activity of older stroke patients. However, patients participating in the programme had a higher level of perceived autonomy of outdoor activities and their informal caregivers perceived a lower care burden. The programme might be promising in providing adequate (after) care, although adaptation of the programme is recommended to increase its feasibility and improve its effects. Trial registration Current Controlled Trials ISRCTN62286281. Registered 19-3-2010.

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

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

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

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

Effect of Exercise Training on the Mental and Physical Well-Being of Caregivers for Persons Living With Chronic Illnesses: A Systematic Review and Meta-Analysis

Background: Increased demands associated with caregiving may lead to deleterious physical and mental health outcomes. Caregiving has proven to have consequences that affect both physical and psychological well-being. The purpose of this systematic review and meta-analysis was to assess the effects of exercise training on the mental and physical health of caregivers for persons living with chronic illnesses. Methods: A systematic review following the Prisma methodology was performed searching eight databases. Thirteen out of 1,632 screened studies were included for analysis. Results: The standardized mean difference was used as the effect size (ES) and was calculated such that a positive ES indicated efficacy of exercise training for improving health. Overall, the meta-analysis yielded a statistically significant and small-to-medium ES (overall ES = 0.30; 95% confidence interval = [0.08, 0.52]; p =.007). Conclusions: Our analysis supports exercise training to improve the mental and physical health of family caregivers of persons living with chronic illnesses.

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

Effect of an Educational Support Programme on Caregiver Burden Among the Family Members of Patients Undergoing Coronary Artery Bypass Graft Surgery

Objectives: The family caregivers of patients undergoing coronary artery bypass graft (CABG) surgery experience considerable physical and emotional distress. This study aimed to investigate the effect of an educational support programme on caregiver burden among the family caregivers of patients undergoing CABG surgery in Iran. Methods: This non-randomised controlled clinical trial was conducted from January to April 2017 at a cardiovascular centre in Tehran, Iran. A total of 80 family caregivers of patients undergoing CABG surgery were sequentially selected and non-randomly assigned to intervention and control groups. The control group received routine care, whereas the intervention group received additional education sessions at baseline, prior to surgery, the day after surgery and before discharge. Caregiver burden was compared at baseline and six weeks post-discharge using the Persian-language versions of the Caregiver Burden Inventory (CBI) and Katz Index of Independence in Activities of Daily Living (IADL). Results: A significant difference was observed between family caregivers in the control and intervention groups with regards to pre-post differences in mean CBI scores (+1.67 ± 19.23 versus +17.45 ± 9.83; P <0.001), with an effect size of −1.14. In addition, there was a significant increase in mean post-discharge IADL scores among CABG patients in the intervention group compared to the control group (4.42 ± 1.05 versus 3.07 ± 1.09; P <0.001). Conclusion: An educational support programme significantly reduced caregiver burden among the family members of patients undergoing CABG surgery in Iran. As such, in addition to routine care, healthcare providers should provide educational support to this population to help mitigate caregiver burden. 

 

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

Effect of an Educational Intervention for Family Caregivers of Individuals with Cancer in Surgery

Objective: To evaluate the effect of an educational intervention on family caregivers of adults with cancer who are in the postoperative period of oncological surgery, to strengthen the competence of home care and reduce overload. Method: This was a quasi-experimental quantitative approach with intervention group and control group; 290 family caregivers of patients undergoing surgery were included, educational intervention was applied from admission to six weeks after discharge, measurement was made before and after competence for home care and care overload. Results: In the group intervened, a positive and statistically significant impact was obtained in the competence for home care and decreased overload. Conclusions: The educational intervention is a strategy that increases skills for care at home, and reduces the burden on caregivers of people with cancer undergoing surgery.

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

The effect of a multimodal comprehensive care methodology for family caregivers of people with dementia

Background: Caregivers experience social, physical and psychological burdens in caring for people with dementia. A study was conducted to assess the efficacy of a multimodal comprehensive care methodology training programme for the family caregivers of people with dementia. Methods: This research was an intervention trial with a quasi-experimental design. A total of 148 family caregivers of people with dementia participated in a multimodal comprehensive care methodology training programme for 6 hours (three times for 2 hours) in 3 months, which was followed by weekly delivery of information via postcard. The care burden of the caregivers was evaluated by the Japanese short version of the Zarit Burden Interview (J-ZBI) before the training, 1 month post-training and 3 months post-training (primary outcome). Each caregiver assessed the symptoms of the people with dementia for whom they provided care with the Behavioral Pathology in Alzheimer’s Disease (Behave-AD) (secondary outcome). Results: A total of 117 family caregivers (79%) were assessed 3 months after training. Over the course of the programme, the care burden significantly decreased from pre-training to 3 months post-training (P < 0.001). The mean care burden scores before, 1 month after, and 3 months after the intervention were 13.3, 10.9 and 10.6, respectively. The mean Behave-AD score of 101 people with dementia (68%) 3 months post-training was lower than that at pre-training, but the difference was not statistically significant (from 13.6 to 11.8, P = 0.005). Conclusions: The multimodal comprehensive care methodology training was associated with a reduction in the care burden of family caregivers. These findings suggest that randomized controlled trials with larger sample sizes are needed. Trial registration UMIN Clinical Trials Registry (UMIN-CTR), UMIN000043245. 

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

The Educational Needs of Family of Patients Discharged from the Intensive Care Units: The Viewpoints of Nurses and the Patients' Families

Background: Thousands of patients are admitted to the intensive care units annually, which are stressful for patients and their families. The discharged patients and their families face different challenges in the caring process of the patients. Objectives: This study aimed to determine the educational needs of the families of patients discharged directly home from the postintensive care units and to compare the views of families and nurses about these needs. Method: This was a cross-sectional study. One hundred forty nurses and 140 family members of the patients discharged from intensive care units participated in the survey by convenience sampling method. A questionnaire of sociodemographic information and a researcher-made questionnaire on the educational needs of the family of patients discharged from the postintensive care units were used for data collection. Results: The mean total score of the educational needs of the patients’ families was 31.81 and 35.33 from views of families and nurses, respectively. Nurses significantly estimated the educational needs of families more than what they did (). The families and nurses reported the educational needs of self-care as well as nutrition and medicine at the highest level, respectively. Both groups reported the educational needs of defecation at the lowest level. Nurses estimated higher educational needs in all dimensions, except for the patient’s mental health and family self-care than families ().  Conclusion: According to the present study, the educational needs were high from the views of nurses and families. Family need assessment is essential in designing and applying instructional interventions. Given the high level of family needs, implementing educational and practical interventions is necessary to enhance their skills.

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

Dravet Syndrome—The Polish Family’s Perspective Study

Aim: The aim of the paper is to study the prevalence of Dravet Syndrome (DS) in the Polish population and indicate different factors other than seizures reducing the quality of life in such patients. Method: A survey was conducted among caregivers of patients with DS by the members of the Polish support group of the Association for People with Severe Refractory Epilepsy DRAVET.PL. It included their experience of the diagnosis, seizures, and treatment-related adverse effects. The caregivers also completed the PedsQL survey, which showed the most important problems. The survey received 55 responses from caregivers of patients with DS (aged 2–25 years). Results: Prior to the diagnosis of DS, 85% of patients presented with status epilepticus lasting more than 30 min, and the frequency of seizures (mostly tonic-clonic or hemiconvulsions) ranged from 2 per week to hundreds per day. After the diagnosis of DS, patients remained on polytherapy (drugs recommended in DS). Before diagnosis, some of them had been on sodium channel blockers. Most patients experienced many adverse effects, including aggression and loss of appetite. The frequency of adverse effects was related to the number of drugs used in this therapy, which had an impact on the results of the PedsQL form, particularly in terms of the physical and social spheres. Intensive care unit stays due to severe status epilepticus also had an influence on the results of the PedsQL form. Conclusions: Families must be counseled on non-pharmacologic strategies to reduce seizure risk, including avoidance of triggers that commonly induce seizures (including hyperthermia, flashing lights and patterns, sleep abnormalities). In addition to addressing seizures, holistic care for a patient with Dravet syndrome must involve a multidisciplinary team that includes specialists in physical, occupational and speech therapy, neuropsychology, social work.

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

Development and psychometric testing of the Spanish version of the Caregiver Preparedness Scale

Aim: To psychometrically test the Spanish version of the Caregiver Preparedness Scale (CPS) and document the preparedness level of caregivers. Design: A descriptive and validation study.MethodPurposive sampling method was used to select 171 family caregivers Spain. The scale was cross‐culturally adapted through a process that included translation, comparison with versions in other languages and back‐translation, review, pre‐testing and validity, and reliability tests. Results: The Spanish family caregivers are mainly female (79%) and married (75%). The Spanish version of the CPS presents changes with respect to the original. Confirmatory factor analysis supported the single‐factor model. Analysis of internal consistency yielded a Cronbach's α of 0.89. Significant correlations (p < .01) with other scales supported convergent validity. A descriptive analysis of the validated scale showed average levels of preparation (2.16 out of 4). Caregivers felt better prepared to attend to the patient's physical needs than emotional or spiritual needs.

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

Delirium-Related Knowledge, Caregiving Performance, Stress Levels, and Mental Health of Family Caregivers of Terminal Cancer Patients with Delirium in a Hospice Care Unit

Purpose: The purpose of this study was to examine the knowledge, caregiving performance, stress levels, and mental health of family caregivers of terminal cancer patients with delirium, insofar as these characteristics are relevant for delirium. Methods: Between May 1, 2019, and June 1, 2020, 96 family caregivers of terminal cancer patients with delirium completed a structured survey, the results of which were analyzed. Results: The average correct answer rate for delirium-related knowledge was 53.2% across all subcategories, which included knowledge of causes (41.5%), symptoms (65.4%), and caregiving (51.7%). The average score for family caregivers' performance of caregiving for delirium was 2.60 ±0.5, with subcategories including caregiving for patients without delirium (2.16±0.95), caregiving for patients with delirium (2.84±1.01), and stress related to caregiving for delirium (39.88±16.55), as well as categories such as patient-related caregiving (44.32±28.98), duty-related caregiving (44.21±30.15), and interpersonal relationship-related caregiving (22.35±25.03). For mental health, the average score among family caregivers was 1.96± 0.70, with the highest score being for the category of additional items (2.28±0.84). Family caregivers of patients with hyperactive delirium as the delirium subtype had higher scores for caregiving performance than caregivers of patients with mixed delirium. Conclusion: Scores for the delirium-related knowledge and caregiving performance of family caregivers were low, while their caregiving stress levels were high due to their lack of knowledge and experience. This indicates the importance of delirium-related education for family members of patients with delirium and the necessity of developing nursing intervention programs to help manage stress and promote mental health among family caregivers.

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

The Decision-Making Experiences of Caregivers Regarding Feeding Tube Placement in Community-Dwelling Adults: A Descriptive Phenomenological Study

Background: Percutaneous endoscopic gastrostomy feeding tube placement is multifactorial and considered a lifesaving mechanism, which leads to a host of thoughts and feelings that affect the decision-making experience. As people live longer and the population ages, these decisions often involve the caregivers who have their own experience and therefore can result in caregiver burden and anxiety. Methods: A descriptive phenomenological study was conducted to describe and understand the caregiver's decision-making experience regarding percutaneous endoscopic gastrostomy feeding tube placement in community-dwelling adults. Edmund Husserl's philosophical underpinnings were utilized in conjunction with Colaizzi's (1978) method of data analysis to maintain the rigor of the study. Sixteen adult caregivers of patients from six rehabilitation and skilled nursing facilities were interviewed using a semistructured interview guide. The audio-recorded interviews were transcribed and thematic analysis was conducted. Findings: The study results yield four main themes: "Survival... that was the determining factor"; "The doctor decided"; "More education... just make sure they understand"; and "It makes me very scared." Implications for practice, policy, and future research are thoroughly discussed.

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

Dealing With the Unthinkable: Bladder and Colorectal Cancer Patients’ and Informal Caregivers’ Unmet Needs and Challenges in Life After Ostomies

Objectives: We examined patient and informal caregiver unmet needs to identify areas for targeted supportive care interventions and programs to enhance both patient and informal caregiver experience. Data Sources: A total of 30 patients who underwent ostomy surgeries for bladder or colorectal cancers and 13 informal caregivers participated in the study. Patients were enrolled at the Icahn School of Medicine at Mount Sinai between 2017 and 2018. Qualitative data were collected by individual interviews, audiotaped, and transcribed verbatim. Transcribed data were iteratively analyzed using Atlas.ti to explore patient and caregiver unmet needs. Results: Patients and informal caregivers reported having insufficient psychological preparation for ostomy surgeries, and very limited hands-on training on stoma care and utility of stomal appliances. Unmet psychological needs related to depression, anxiety, and distress caused by changes in body image and sexual, urinary, and bowel function were reported. Patients and caregivers also reported significant patient medical needs in the acute postoperative period including pain, fatigue, sleep disturbance, inflammation, and complications resulting in hospital readmissions. Colorectal cancer patients specifically experienced significant challenges with changes in diet and nutrition that contributed to ostomy care burden. Both patients and caregivers recommended seeking psychological and social support to enhance both patient and caregiver emotional adjustment to life after ostomies. Conclusion: Meeting patient and informal caregiver unmet informational and supportive care needs is imperative to improve their quality of life and adjustment. Implications for Nursing Practice: An effective supportive care plan should be designed and utilized in clinical care to improve ostomy patients’ and caregivers’ outcomes. 

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

Covid-19 vaccine literacy of family carers for their older parents in Japan

Background: In super-ageing Japan, COVID-19 vaccinations were starting to reach older people as of June 2021, which raises the issue of vaccine literacy. This study focuses on family members who work and also care for their older parents, as they are at risk of COVID-19 and also risk transmitting COVID-19 to the parents they care for and potentially influencing their parents’ vaccine uptake. Such family carers are central to the approach in Japan to achieving a sustainable and resilient society in response to ageing. Contrasting family carers’ COVID-19 vaccine literacy with their overall health literacy provides insights into their preparedness for COVID-19 vaccinations. The purpose of this study is to understand how vaccine literacy, compared to health literacy, varies across family carers and the sources of information they use. Methods: Through a cross-sectional online survey, family carers’ vaccine literacy, health literacy and their sources of information, including mass media, social media, health and care professionals, family, colleagues, friends, and others, were assessed. The participants’ (n = 292) mean age was 53, with 44% women, and an average of 8.3 h per week caring for their parents. Results: Notwithstanding the increased risks from COVID-19 with age, COVID-19 vaccine literacy relative to health literacy for older family carers is lower on average, higher with increased provision of care, and more variable, resulting in a substantial proportion of older family carers with relatively low vaccine literacy. Conclusions: At this stage of vaccine rollout in Japan, family carers’ sources of information to inform COVID-19 vaccine literacy is distinct, including more national and local mass media versus less health and care professionals and informal networks, which indicates the importance of tailored health communication strategies to enhance vaccine literacy. 

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

COVID-19 and Long-Term Care: the Essential Role of Family Caregivers

Background: Those most at risk from severe COVID-19 infection are older adults; therefore, long-term care (LTC) facilities closed their doors to visitors and family caregivers (FCGs) during the initial wave of the COVID-19 pandemic. The most common chronic health condition among LTC residents is dementia, and persons living with dementia (PLWD) rely on FCGs to maintain their care provision. This study aims to evaluate the impact of visitor restrictions and resulting loss of FCGs providing in-person care to PLWD in LTC during the first wave of the COVID-19 pandemic. Method: An online survey and follow-up focus groups were conducted June to September 2020 (n=70). Mixed quantitative (descriptive statistics) and qualitative (thematic analysis) methods were used to evaluate study data. Results: FCGs were unable to provide in-person care and while alternative communication methods were offered, they were not always effective. FCGs experienced negative outcomes including social isolation (66%), strain (63%), and reduced quality of life (57%). PLWD showed an increase in responsive behaviours (51%) and dementia progression. Consequently, 85% of FCGs indicated they are willing to undergo specialized training to maintain access to their PLWD. Conclusion: FCGs need continuous access to PLWD they care for in LTC to continue providing essential care.

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

The course of readmission in frail older cardiac patients

Aim: The aim of this study is to explore patients’ and (in)formal caregivers’ perspectives on their role(s) and contributing factors in the course of unplanned hospital readmission of older cardiac patients in the Cardiac Care Bridge (CCB) program.DesignThis study is a qualitative multiple case study alongside the CCB randomized trial, based on grounded theory principles. Methods: Five cases within the intervention group, with an unplanned hospital readmission within six months after randomization, were selected. In each case, semi‐structured interviews were held with patients (n = 4), informal caregivers (n = 5), physical therapists (n = 4), and community nurses (n = 5) between April and June 2019. Patients’ medical records were collected to reconstruct care processes before the readmission. Thematic analysis and the six‐step analysis of Strauss & Corbin have been used. Results: Three main themes emerged. Patients experienced acute episodes of physical deterioration before unplanned hospital readmission. The involvement of (in)formal caregivers in adequate observation of patients’ health status is vital to prevent rehospitalization (theme 1). Patients and (in)formal caregivers’ perception of care needs did not always match, which resulted in hampering care support (theme 2). CCB caregivers experienced difficulties in providing care in some cases, resulting in limited care provision in addition to the existing care services (theme 3). Conclusion: Early detection of deteriorating health status that leads to readmission was often lacking, due to the acuteness of the deterioration. Empowerment of patients and their informal caregivers in the recognition of early signs of deterioration and adequate collaboration between caregivers could support early detection. Patients’ care needs and expectations should be prioritized to stimulate participation.Impact(In)formal caregivers may be able to prevent unplanned hospital readmission of older cardiac patients by ensuring: (1) early detection of health deterioration, (2) empowerment of patient and informal caregivers, and (3) clear understanding of patients’ care needs and expectations.

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

Construction and validation of self-care educational technology for caregivers

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

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

Congruence of cancer pain experience between patients and family caregivers and associated factors: a multicenter cross-sectional study in China

Purpose: The purposes of this study were to determine whether there were differences in the cancer pain experience between patients and family caregivers (FCGs) and to explore the associated factors that influence cancer pain experience congruence. Methods: A multicenter cross-sectional study was conducted. A total of 410 patient-family caregiver dyads completed face-to-face surveys, including information about basic characteristics, the Patient Pain Questionnaire (PPQ), and the Family Pain Questionnaire (FPQ). The difference in cancer pain experience between patients and family caregivers was analyzed using a paired t test. Indicators for the congruence of cancer pain experience were analyzed using the chi-square test and two independent-sample t tests for bivariate analysis and multivariate binary logistic regression analysis. Results: Of the patients, 57.1% were men, and 60.7% perceived moderate performance status. The majority of the family caregivers was female (54.9%). The mean (SD) score on the pain experience subscale was 4.82 (1.66) for 410 patients and 5.02 (1.66) for 410 family caregivers. The difference was significant (P < 0.01). Additionally, 87 (21.2%) dyads were in the congruent group, and 323 (78.8%) dyads were in the incongruent group. Patients' self-perceived moderate performance status (OR = 2.983, P < 0.01) and family caregivers' pain knowledge (OR = 1.171, P < 0.05) were the main factors influencing the congruence of cancer pain experience. Conclusion: The findings of this study indicate that family caregivers reported significantly worse cancer pain experiences than patients. Family caregivers' pain knowledge was a primary influencing factor. It is suggested that educational interventions aimed at teaching family caregivers and patients how to communicate their pain experience and improving the knowledge of family members regarding pain and its management may help in aligning their perceptions and thereby contribute to better quality of life and pain management outcomes. 

 

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

The comprehensive factors affecting the sleep quality in family caregivers of patients with dementia in the community of South Korea

Purpose: The purpose of this study was to provide the comprehensive factors affecting the sleep quality in family caregivers of patients with dementia in South Korea, including patient and caregiver-related factors. Methods: The participant were a total of 156 family caregivers who live with patients with dementia in South Korea. Patient and caregiver-related factors were measured using tools with high reliability. Data collection was performed from May to August 2019, and data were analyzed using descriptive analysis, t-test, ANOVA, Pearson's correlation coefficients, and multiple regression with the SPSS/21.0 program. Results: The significant factors affecting family caregivers’ sleep quality were their depression (β=.52, p<.001) and their education (β=.23, p=.019). Conclusion: There is a need to monitor caregivers’ depression and sleep quality. Future studies, biomarker to monitor caregivers’ sleep quality to achieve objective evidence. There is a need to provide additional education programs to improve the understanding around caregivers' sleep quality especially for caregivers with low level of education. 

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

Comparison of Traditional Videos With Telenovelas for Hospice Family Caregivers Education

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

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

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

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

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

Coaching While Waiting for Autism Spectrum Disorder Assessment: Protocol of a Pilot Feasibility Study for a Randomized Controlled Trial on Occupational Performance Coaching and Service Navigation Support

Background: In Australia, the average time between a first concern of autism spectrum disorder (ASD) and diagnosis is over 2 years. After referral for assessment, families often wait 6-12 months before their appointment. This can be a time of uncertainty and stress for families. For some families, other forms of assistance are not accessible and thus timely intervention opportunities are missed. There is little evidence about how to provide the best support for children or caregivers while on assessment waiting lists. Objective: The aim of this study is to determine whether use of a coaching intervention called Occupational Performance Coaching (OPC) combined with service navigation support is feasible for families waiting for ASD assessment, as a crucial first step in planning a randomized controlled trial. Methods: A pilot and feasibility study will be conducted using recommended constructs and associated measures, which will be reported using CONSORT (Consolidated Standards or Reporting Trials) guidance. Participants will be child and caregiver dyads or triads, recruited within 4 months of their child (aged 1-7 years) being referred to one of two services for an ASD assessment in Victoria, Australia. A blinded randomization procedure will be used to allocate participants to one of three trial arms: (1) coaching and support intervention delivered face to face, (2) coaching and support intervention via videoconference, and (3) usual care. Descriptive statistics will be used to describe the sample characteristics of parents and children, inclusive of service access at baseline and follow up. Recruitment rates will be reported, and retention rates will be evaluated against a predicted rate of 70%-80% in each intervention arm. Goal attainment, using the Canadian Occupational Performance Measure, will indicate preliminary evidence for efficacy within the intervention arms, with an increase of 2 or more points on a 10-point performance and satisfaction scale considered clinically significant. Results: The study was approved by The Royal Children’s Hospital Research Ethics and Governance Department in September 2018. As of October 2020, 16 families have been recruited to the study. Data analysis is ongoing and results are expected to be published in 2021. Conclusions: Study findings will support planning for a future randomized controlled trial to assess the efficacy of OPC and service navigation support for caregivers of children awaiting ASD assessment. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12620000164998; International Registered Report Identifier (IRRID): DERR1-10.2196/20011

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

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

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

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

Clarifying the information and support needs of family caregivers of nursing home residents with advancing dementia

Background: Research has identified inadequacies in the quality and quantity of dementia-related information, particularly end-of-life information provided to those living with dementia and their family caregivers. The purpose of this study was to identify what types of information family caregivers of persons living with dementia in nursing homes would deem useful in preparing them for their relative's end-of-life and assist them to make decisions about care along the dementia trajectory. Methods: The qualitative methodology of interpretive description was used to guide the study in which semi-structured interviews were conducted with nursing home staff in clinical roles (e.g., nurses, health care aides, social workers, speech language pathologists; N = 26), palliative care clinicians (N = 7), and bereaved family caregivers of persons with dementia (N = 17). Data were analyzed using thematic analysis. Findings: Eight substantive categories essential to meeting family members' needs for information and preparing them for the future were identified including: (i) dementia in general, (ii) dementia toward the end-of-life, (iii) care of persons dying with dementia, (iv) the role of family caregiver as decision maker, (v) sustaining connection, (vi) emotional impact of dementia on caregivers, (vii) relationships with staff, and (viii) general questions about life in a NH. Conclusion: Our findings suggest that family caregivers of nursing home residents with dementia have unique information and support needs, some disease specific, others more related to life in a nursing home in general. Health care providers need to support and encourage dementia literacy for family caregivers. A key strategy is to proactively broach these topic areas, as too often family caregivers may not recognize or value their need for information.

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

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

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

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

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

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

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

Challenges implementing a carer support intervention within a national stroke organisation: findings from the process evaluation of the OSCARSS trial

Objectives: To examine the implementation of an intervention to support informal caregivers and to help understand findings from the Organising Support for Carers of Stroke Survivors (OSCARSS) cluster randomised controlled trial (cRCT). Design: Longitudinal process evaluation using mixed methods. Normalisation process theory informed data collection and provided a sensitising framework for analysis. Setting: Specialist stroke support services delivered primarily in the homes of informal carers of stroke survivors.ParticipantsOSCARSS cRCT participants including carers, staff, managers and senior leaders. Intervention: The Carer Support Needs Assessment Tool for Stroke (CSNAT-Stroke) intervention is a staff-facilitated, carer-led approach to help identify, prioritise and address support needs. Results: We conducted qualitative interviews with: OSCARSS cRCT carer participants (11 intervention, 10 control), staff (12 intervention, 8 control) and managers and senior leaders (11); and obtained 140 responses to an online staff survey over three separate time points. Both individual (carer/staff) and organisational factors impacted implementation of the CSNAT-Stroke intervention and how it was received by carers. We identified four themes: staff understanding, carer participation, implementation, and learning and support. Staff valued the idea of a structured approach to supporting carers, but key elements of the intervention were not routinely delivered. Carers did not necessarily identify as ‘carers’, which made it difficult for staff to engage them in the intervention. Despite organisational enthusiasm for OSCARSS, staff in the intervention arm perceived support and training for implementation of CSNAT-Stroke as delivered primarily by the research team, with few opportunities for shared learning across the organisation. Conclusions: We identified challenges across carer, staff and organisation levels that help explain the OSCARSS cRCT outcome. Ensuring training is translated into practice and ongoing organisational support would be required for full implementation of this type of intervention, with emphasis on the carer-led aspects, including supporting carer self-identification.Trial registration number: ISRCTN58414120.

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

Central Vascular Access Device Complications in Pediatric Home Care Patients Managed by Family Caregivers or Nurses

Background: There is a paucity of data regarding complications and outcomes of central vascular access devices (CVADs) in pediatric home care patients. Unlike hospital and clinic settings, home care patients commonly receive catheter care and accesses by family caregivers rather than nurses. Design: This 2-year prospective study compared complications and outcomes of 222 CVADs managed by nurses or family caregivers. CVADs were followed for skin complications at insertion site, catheter complications, central line-associated bloodstream infection occurrences, and the outcome of dysfunctional catheters treated with alteplase. Results: Results showed no differences in any CVAD complications, whether access and care were primarily performed by trained family caregivers or nurses.

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

Caregivers’ Nutrition Knowledge and Dietary Intake of Type 1 Diabetic Children Aged 3–14 Years in Uganda

Purpose: This study aimed to assess the association between caregiver’s level of type 1 diabetes (T1D) nutrition knowledge with children’s dietary diversity score (DDS), mean intake of macronutrients, nutrient adequacy ratios (NARs) and mean adequacy ratio (MAR). Research Design and Methods: A cross-sectional analytical study design was used. The study was conducted at 6 diabetes clinics in Uganda among 59 caregivers and 61 children. T1D nutrition knowledge survey (NKS) was used to assess the caregiver’s nutrition knowledge, and the 24-hour dietary recall and dietary diversity score (DDS) questionnaires were used to collect data on the child’s dietary intake. Results: Majority (93.2%) of the caregivers had low T1D nutrition knowledge. Carbohydrate counting was the least performed nutrition knowledge domain. The children’s mean DDS, calorie intake and MAR were 5.7 ± 1.6, 666.7 ± 639.8 kcal and 0.7 ± 0.3, respectively. The mean NARs of carbohydrate, protein, and fat were 0.9 ± 0.3, 0.9 ± 0.4, 0.5 ± 0.5, respectively. There was a significant association between DDS with NARs of carbohydrate, protein, fat, vitamins A, B2, B3, B5, B12, folic acid, zinc and MAR. No formal education was significantly associated with a lower mean NKS score among caregivers (p = 0.039). Caregivers’ T1D nutrition knowledge, age and family size explained 14% of variation in the child’s dietary diversity (p = 0.041). Conclusion: Despite poor nutrition knowledge among caregivers especially on carbohydrate counting, dietary diversity among children with T1D remained favorable. Excess carbohydrate intake was observed with inadequate intake of proteins, fats and micronutrients (vitamin A, B vitamins and calcium). Caregivers with low education were more likely to register poor nutrition knowledge; therefore, there is need to develop and tailor nutrition education programmes to enhance comprehensive learning among caregivers for improved outcomes.

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

Caregiver-guided pain coping skills training for patients with advanced cancer: Results from a randomized clinical trial

Background: Pain is a major concern among patients with advanced cancer and their family caregivers. Evidence suggests that pain coping skills training interventions can improve outcomes, however they have rarely been tested in this population. Aim: To test the efficacy of a caregiver-guided pain coping skills training intervention. The primary outcome was caregiver self-efficacy for helping the patient manage pain. Design: A randomized controlled trial compared the intervention to an enhanced treatment-as-usual control. Dyads in both conditions received pain education, and those in the intervention received three sessions of pain coping skills training. Caregiver outcomes (self-efficacy; caregiver strain, caregiving satisfaction, psychological distress) and patient outcomes (self-efficacy, pain intensity and interference, psychological distress) were collected at baseline and post-intervention. Setting/participants: Two hundred two patients with stage III–IV cancer and pain and their family caregivers were enrolled from four outpatient oncology clinics and a free-standing hospice/palliative care organization. Results: Compared to those in the control arm, caregivers in the intervention reported significant increases in caregiving satisfaction (p < 0.01) and decreased anxiety (p = 0.04). In both conditions, caregivers reported improvements in self-efficacy, and patients reported improvements in self-efficacy, pain severity and interference, and psychological distress. Conclusions: This is the first study to test a pain coping skills intervention targeted to patients and caregivers facing advanced cancer. Findings suggest that pain education provides benefits for patients and caregivers, and coping skills training may be beneficial for caregivers. Further research is needed to optimize the benefits of education and pain coping skills training for improving cancer pain outcomes. Trial registration: ClinicalTrials.gov NCT02430467, Caregiver-Guided Pain Management Training in Palliative Care

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

Caregiver willingness to provide care in the ICU: A concept analysis

Aim: The purpose of this paper is to conceptually define "caregiver willingness" for application to a family member providing care to a critically ill loved one during an intensive care unit (ICU) hospitalization. Background: Delivering care to a family member may have psychological benefits for both the caregiver and the critically ill loved one; however, the willingness of family members to provide care is an elusive concept. Examination of the "caregiver willingness" concept will help to advance nursing science. Design: Walker and Avant's eight step strategy guided identification of the defining attributes, empirical referents, antecedents, and consequences of "caregiver willingness." Data Source: Academic Search Complete, CINAHL, MEDLINE, APA PsycInfo, and Psychology and Behavioral Health Collections were used to search for literature published between 2000 and 2020. Review Methods: A literature search was conducted using keywords, such as "caregiver," "willingness," "willing to care," "family or families or relatives or siblings or caregiver," and "critically ill or intensive care or ICU or critical care." Results: A definition of caregiver willingness was constructed and defined as "a family member or significant other's affirmation or acknowledgment of openness to engage in the physical and/or emotional supportive care of a loved one who is critically ill and cannot perform self‐care." Conclusion: The definition provides a foundation for instrument development to measure caregiver willingness and possible theory expansion for family engagement and caregiving in the ICU.

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

Caregiver Response to an Online Dementia and Caregiver Wellness Education Platform

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

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

Caregiver Education and Training: Learning Preferences of Informal Caregivers of Adult Care Recipients.

Background: Oncology nurses play a key role in supporting caregivers through education and training in both inpatient and outpatient settings. This article describes the learning preferences of informal caregivers of adult care recipients. Caregiver respondents preferred multiple training methods, with most endorsing in-person instruction, online video instruction, and reading materials. AT A GLANCE: Caregivers are often underprepared for the care they provide. Oncology nurses have been known as trusted sources of information and education for patients and caregivers. Efforts should be undertaken to extend learning beyond clinical encounters and consider caregiver preferences in learning

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

Burdens and Educational Needs of Informal Caregivers of Older Adults With Urinary Incontinence: An Internet-Based Study

Purpose: The purpose of this study was to describe the burden and educational needs of informal caregivers of care-dependent older adults with urinary incontinence (UI). Design: A cross-sectional, descriptive survey of informal caregivers recruited through Google Ads was performed. Methods: An online survey, including the Overactive Bladder-Family Impact Measure, was used to assess five areas of the experience of the informal caregiver that may be affected by caring for a person with UI and their educational needs. Findings: Respondents (n = 77) reported a substantial impact of their care recipients' UI on their lives, with concern, travel, and social subscales most affected. However, 42% never sought treatment on behalf of their care recipient. Educational needs included UI treatment strategies and guidance to select appropriate supplies. Conclusions: Caregivers underreported their care recipient's UI and need substantially more support from healthcare providers to manage the condition. Clinical Relevance: Nurses should assess for UI among care-dependent older adults and, if present, provide information and strategies to lessen the impact on caregiver lives.

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

Building family caregiver skills using a simulation-based intervention for care of patients with cancer: protocol for a randomized controlled trial

Background: Family caregivers of patients with cancer undergoing radiation therapy experience significant distress and challenges related to high symptom burden and complex care demands. This is particularly true for caregivers of patients with head and neck, esophageal, anal, rectal, and lung cancers, who are often receiving combined-modality treatment and may have tracheostomy tubes, gastrostomy tubes, or colostomies/ileostomies. This study aims to evaluate a simulation-based nursing intervention to provide information, support, and training to caregivers during radiation therapy. Methods: This randomized controlled trial will include a sample of 180 patients and their family caregivers. Caregivers assigned to the control group will receive usual care and an informational booklet from the National Cancer Institute (NCI). Those in the intervention group will receive usual care, the NCI booklet, and three meetings with a nurse interventionist during radiation treatment followed by a booster call two weeks posttreatment. Intervention sessions focus on themes consistent with the trajectory of radiation therapy: the patient experience/needs, the caregiver experience and dyad communication, and transition to survivorship. Outcomes are measured at baseline, end of treatment (T2), and 4 (T3) and 20 (T4) weeks posttreatment, with the primary outcome being caregiver anxiety at T4. Discussion: This trial is innovative in its use of simulation in a psychoeducational intervention for family caregivers. The intervention is administered at point-of-care and aimed at feasibility for integration into clinical practice. Patient quality of life and healthcare utilization measures will assess how providing support and training to the caregiver may impact patient outcomes. Trial registration: The trial was registered on 08/14/2019 at ClinicalTrials.gov (identifier NCT04055948).

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

Balneotherapy with a psychoeducation program for the promotion of a balanced care in family caregivers of older adults

Background: This study aimed to analyze the efficacy of an intervention program for informal caregivers of elderly dependent that combined balneotherapy with group psychoeducation (BT-PE) based on the balanced care model. Method: The BT-PE intervention (N = 124) was compared with a comparison group only exposed to balneotherapy (BT) (N = 76). The two modalities included both primary and secondary informal caregivers. A three-way mixed ANOVA was conducted to determine the effects of two between-subjects´ factors (intervention group and caregiver type) and one within-subjects´ factor (time) on burden, depression, anxiety, maladjustment and care satisfaction. Results: Results showed less burden and more care satisfaction in both primary and secondary caregivers participating in the BT-PE program after the interventions. Primary caregivers also showed lower levels of maladjustment in the experimental group at post-intervention. Although depressive symptoms and anxiety decreased significantly in both intervention groups, BT-PE did not show lower scores compared with the application of sole BT. Conclusion: The relevance of caregivers´ psychoeducation on the balanced care model and its combination with balneotherapy is highlighted. 

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

Autism-specific parenting self-efficacy: An examination of the role of parent-reported intervention involvement, satisfaction with intervention-related training, and caregiver burden

Background: Parenting self-efficacy, described as the beliefs parents hold about their ability to successfully parent their children, has been shown to support parent and child well-being. Parents of children with autism spectrum disorder face disproportionately high levels of demand both as caregivers, and as partners in multiple, complex, intervention programs. This study examines the relationship between parents' experiences with their child's interventions—specifically their sense of involvement in treatment and satisfaction with intervention-related training—and their confidence in parenting a child with autism spectrum disorder, defined as autism-specific parenting self-efficacy. Methods: Participants (N = 438, 93% mothers of children with autism spectrum disorder aged 2–17 years) completed our novel autism-specific parenting self-efficacy scale and rated their experience of involvement in their child's interventions and satisfaction with intervention-related training across a range of common autism spectrum disorder–related treatments. Respondents also completed a caregiver burden scale. Results: Findings indicate that parents who report greater involvement in their child's interventions, and note greater satisfaction with intervention-related training, also report greater autism-specific parenting self-efficacy. Parents who report greater financial and social burden report lower autism-specific parenting self-efficacy. Conclusions: We propose that these results are important in creating intervention experiences that foster parental self-efficacy through involvement, productive training experiences, and addressing parental burden.  

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

Associations Between Hospice Care and Scary Family Caregiver Experiences

Context: Hospice deaths in the U.S. are increasing. Dying hospice patients may have rapidly emerging needs the hospice team cannot immediately meet, exposing family caregivers to fright-inducing (i.e., scary) situations. Objectives: To examine relationships between hospice care and family caregiver exposures and psychological responses to witnessing common and distressing patient symptoms near the end of life. Methods: Secondary analysis of prospective cohort study of 169 patients with advanced cancer and their family caregivers was analyzed. Multivariable regression analyses modeled associations between hospice use and caregiver exposures and psychological responses (fear and helplessness) to witnessing distressing symptoms common near death, adjusting for potential confounding influences (e.g., home death, patient characteristics, and suffering). Caregiver self-reported exposures and responses to observing patient symptoms during the last month of life were assessed using the validated Stressful Caregiving Response to Experiences of Dying (SCARED) scale. Results: Hospice care was significantly positively associated with more exposures and negative psychological responses to distressing patient symptoms, adjusting for home death, patient characteristics, and physical and mental suffering. On average, hospice patients' caregivers scored 1.6 points higher on the SCARED exposure scale and 6.2 points higher on the SCARED psychological response scale than caregivers of patients without hospice (exposure: 10.53 vs. 8.96; psychological responses: 29.85 vs. 23.67). Patient pain/discomfort, delirium, and difficulty swallowing/choking were reported by three-fourths of caregivers and associated with the most fear and helplessness among caregivers. Conclusion: Hospice care is associated with more exposures to and caregiver fear and helplessness in response to scary patient experiences. Research is needed to understand how better to support family caregivers of hospice patients to enable them to cope with common distressing symptoms of dying cancer patients. Hospice clinicians providing additional education and training about these symptoms might enable caregivers to better care for dying loved ones and reduce the stresses of end-of-life caregiving.

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

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

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

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

Assessment of alternative methods for informal caregivers to perform patient repositioning tasks

Background: Manual patient handling tasks put formal and informal caregivers at risk of musculoskeletal injury. Intervention research to reduce risks to informal caregivers is limited. Design: This study examined effects of slide sheet use when individual informal caregivers performed patient boosting and turning tasks. Three methods of slide sheet use and a baseline method (no slide sheet) were compared, to reposition a 70 kg individual. Results: Muscle activity, ground reaction force, posture, and rating of perceived exertion were significantly affected by task method. Erector Spinae activity was reduced in boosting and turning away tasks with the slide sheet. Shoulder elevation, torso angle, and normalized vertical ground reaction force were also reduced with the slide sheet during boosting. The turn towards task was generally not improved with the slide sheet. Conclusion: Overall, using a slide sheet provided biomechanical benefits to individual caregivers performing two common patient handling tasks: boosting and turning patient away from caregiver. 

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

Application of the hospital‐family holistic care model in caregivers of patients with permanent enterostomy: A randomized controlled trial

Aims: To evaluate the effectiveness of the hospital‐family holistic care model based on the theory of 'Timing It Right' in caregivers of patients with permanent enterostomy. Design: A prospective randomized controlled trial. Methods: One hundred and twenty‐five caregivers of patients with permanent enterostomy were recruited from 1 May 2017–31 August 2019. They were randomized into either intervention group (N = 62) or control group (N = 63). The control group received routine care and follow‐up, while the intervention group received routine care, follow‐up, and hospital‐family holistic care intervention based on 'Timing It Right'. The care ability, psychological distress, and life quality of the caregivers were evaluated between the groups before the intervention, at discharge, and 3 and 6 months after discharge. Results: One hundred and eleven caregivers completed the study (88.8%). At 3 and 6 months after discharge, the care ability and life quality in the intervention group were significantly better than those in the control group (t = 8.506/9.783, t = 22.652/26.179, p < 0.05) based on the t tests, and the psychological distress was lower than that in the control group. The ostomy adaptability of the control group was significantly lower than that in the intervention group (p < 0.001) based on the t tests, and the χ2 test showed that ostomy complication was more than that in the intervention group (23.81% vs. 12.90% and 34.92% vs. 19.35%; p < 0.05) at 3 and 6 months after discharge. The interaction between time and group showed that the effect of time factor varied with the group and the four evaluation indexes in the intervention group gradually improved with the extension of the observation time and were better than those in the control group based on generalized estimating equation model. Conclusion: The hospital‐family holistic care model based on 'Timing It Right' can effectively improve the care ability of caregivers of patients with permanent enterostomy, reduce psychological distress, and improve the quality of life. Impact: The caregivers of patients with permanent enterostomy showed dynamic changes in their care experience and needs at different stages of the disease. The hospital‐family holistic care intervention strategy based on 'Timing It Right' can effectively improve the caregiver's care ability, alleviate psychological distress, and improve the quality of life. Additionally, improving the patients' stoma adaptability and reducing the incidence of complications related to ostomy.
 

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

Advance Care Planning for African American Caregivers of Relatives With Dementias: Cluster Randomized Controlled Trial

Background and Objectives: African-American family caregivers may have insufficient knowledge to make informed end-of-life (EOL) decisions for relatives with dementias. Advance Care Treatment Plan (ACT-Plan) is a community-based education intervention to enhance knowledge of dementia and associated EOL medical treatments, self-efficacy, intentions, and behavior (written EOL care plan). This study evaluated efficacy of the intervention compared to attention control. Research Design and Methods: In a theoretically based, 2-group, cluster randomized controlled trial, 4 similar Midwestern urban megachurches were randomized to experimental or control conditions. Each church recruited African-American caregivers, enrolling concurrent waves of 5 to 9 participants in 4 weekly 1-hour sessions (358 total: ACT-Plan n = 173, control n = 185). Dementia, cardiopulmonary resuscitation (CPR), mechanical ventilation (MV), and tube feeding (TF) treatments were discussed in ACT-Plan classes. Participants completed assessments before the initial class, after the final class (week 4), and at week 20. Repeated measures models were used to test the intervention effect on changes in outcomes across time, adjusting for covariates as needed. Results: Knowledge of CPR, MV, TF, and self-efficacy to make EOL treatment decisions increased significantly more in the ACT-Plan group at weeks 4 and 20. Knowledge of dementia also increased more in the ACT-Plan group at both points, reaching statistical significance only at week 20. Intentions to make EOL treatment decisions and actually an advance care plan were similar between treatment arms. Discussion and Implications: Findings demonstrate promise for ACT-Plan to increase informed EOL treatment decisions for African American caregivers of individuals with dementias.

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

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

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

Access source material through DOI

Postdischarge Intervention for Stroke Caregivers: Protocol for a Randomized Controlled Trial

Background: The majority of stroke survivors return to their homes and need assistance from family caregivers to perform activities of daily living. These increased demands coupled with the lack of preparedness for their new roles lead to a high risk for caregivers developing depressive symptoms and other negative outcomes. Follow-up home support and problem-solving interventions with caregivers are crucial for maintaining stroke survivors in their homes. Problem-solving interventions are effective but are underused in practice because they require large amounts of staff time to implement and are difficult for caregivers logistically.; Objective: The aim of this study is to test a problem-solving intervention for stroke caregivers that can be delivered over the telephone during the patient's transitional care period (time when the stroke survivor is discharged to home) followed by 8 asynchronous online sessions.; Methods: The design is a two-arm parallel randomized clinical trial with repeated measures. We will enroll 240 caregivers from eight Veterans Affairs (VA) medical centers. Participants randomized into the intervention arm receive a modified problem-solving intervention that uses telephone and web-based support and training with interactive modules, fact sheets, and tools on the previously developed and nationally available Resources and Education for Stroke Caregivers' Understanding and Empowerment Caregiver website. In the usual care group, no changes are made in the information, discharge planning, or care the patients who have had a stroke normally receive, and caregivers have access to existing VA resources (eg, caregiver support line, self-help materials). The primary outcome is a change in caregiver depressive symptoms at 11 and 19 weeks after baseline data collection. Secondary outcomes include changes in stroke caregivers' burden, knowledge, positive aspects of caregiving, self-efficacy, perceived stress, health-related quality of life, and satisfaction with care and changes in stroke survivors' functional abilities and health care use. The team will also determine the budgetary impact, facilitators, barriers, and best practices for implementing the intervention. Throughout all phases of the study, we will collaborate with members of an advisory panel.; Results: Study enrollment began in June 2015 and is ongoing. The first results are expected to be submitted for publication in 2021.; Conclusions: This is the first known study to test a transitional care and messaging center intervention combined with technology to decrease caregiver depressive symptoms and to improve the recovery of stroke survivors. If successful, findings will support an evidence-based model that can be transported into clinical practice to improve the quality of caregiving post stroke.; Trial Registration: ClinicalTrials.gov NCT01600131; https://www.clinicaltrials.gov/ct2/show/NCT01600131.; International Registered Report Identifier (irrid): DERR1-10.2196/21799. 

Access source material through DOI

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

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

Access source material through DOI

Moving Evidence-Informed Assessment and Management of Behavioral and Psychological Symptoms of Dementia into the Real World: Training Family and Staff Caregivers in the DICE Approach

Objective: To investigate the impact of a one-day training program on care-givers' confidence and knowledge in managing aspects of dementia care. Design: One-day caregiver training program featuring: 1) an interactive, multi-media format; 2) a companion manual; and 3) a "brain-storming" session at the end of the day that utilized attendees' real-world cases where the use of the DICE (Describe, Investigate, Create, and Evaluate) approach was illustrated "live." Setting: Three different geographical sites in Michigan. Participants: Family (n = 40) and professional (paid; n = 140) caregivers (total n = 180) for people with dementia. Measures: Preand post self-ratings related to confidence in aspects of dementia care management before and directly after the training. Results: Comparing self-ratings pre and post-training, more than 50% of family caregivers showed improvement in confidence post-training on 11 of 12 items with significant improvement in 4 items. Among professionals, more than 50% of caregivers showed improved confidence on 3 of 12 items, with 4 items showing significant improvement. Family caregivers were significantly more likely than professionals to show improved confidence on 6 of 12 items. Conclusions: The number of people with dementia and their family caregivers is large and growing every day with the aging of the population. Living well with dementia is the goal. Current care systems are inadequate and lead to multiple poor outcomes. Innovative solutions like the DICE Approach with delivery methods including a manual and interactive training can put the key components of good dementia care at the fingertips of the people who need it most.

Access source material through DOI

Geriatrics workforce enhancement program: educational outcomes of community-based dementia caregiver conferences

Providing educational interventions to informal dementia caregivers has been shown to have numerous positive outcomes including improving general well-being and quality of life as well as reducing depression, anxiety, and caregiver stress. The purpose of this study is the development, delivery, and evaluation of caregiver conferences to educate informal dementia caregivers about dementia and caregiving. We provided eight half-day conferences for informal caregivers to educate them about Alzheimer's disease and related dementias (ADRD) and make them aware of community and state resources. Demographic and program evaluation surveys including an assessment of Alzheimer's disease knowledge were administered to participants. A total of 563 community-based caregivers attended the conferences. Participants tended to be female, White, and well-educated. Evaluation surveys showed high levels of satisfaction with the training. Paired t-tests showed no significant differences in AD knowledge prior to and following the training. Although there were no statistically significant improvements in participant ADRD knowledge, participant reported satisfaction levels with the conferences were high with the agreement that their educational needs were met and that the information that they learned will help improve the care they provide to the individual(s) with ADRD.

Access source material through DOI

The experiences of family caregivers who participated in a family involvement program after cancer surgery: A qualitative study

Purpose: As recovery time after oncological surgery can be long, family caregivers often play an important role in the delivery of care after patients' discharge. To prepare carers for this role, we developed a family involvement program (FIP) to enhance their active involvement in post-surgical oncology care during hospitalization. The purpose of this qualitative study was to explore family caregivers experience of participating in a FIP. Methods: We conducted semi-structured interviews with 12 family caregivers who participated in the family involvement program. The program is comprised of two main components (1) training and coaching of physicians and nurses; (2) active involvement of family caregivers in fundamental care activities. This active involvement included six activities. Data were analyzed using interpretative phenomenological analysis. Results: Family caregivers positively valued the program. Active participation in post-surgical care was experienced as an acceptable burden. The program gave participants the ability to simply be present ('being there') which was considered as essential and improved their understanding of care, although family caregivers sometimes experienced emotional moments. Active involvement strengthened existent relationship between the family caregiver and the patient. Participants thought clinical supervision. by nurses is important. Conclusions: Physical proximity appeared as an essential part of the family involvement program. It helped carers to feel they made a meaningful contribution to their loved ones' wellbeing. Asking families to participate in fundamental care activities in post-surgical oncology care was acceptable, and not over-demanding for caregivers.

Access source material through DOI

Enhanced coping and self-efficacy in caregivers of stem cell transplant recipients: Identifying mechanisms of a multimodal psychosocial intervention

Background In a recent trial, a 6-session intervention (BMT-CARE) integrating medical information with cognitive-behavioral strategies improved quality of life (QOL), mood, coping skills, and self-efficacy for family/friend caregivers of hematopoietic stem cell transplantation (HCT) recipients. This study examined whether improvements in coping and self-efficacy mediated the intervention effects on QOL and mood. Methods From December 2017 to April 2019, 100 caregivers of HCT recipients were enrolled into a randomized clinical trial of BMT-CARE versus usual care. Caregivers completed self-report measures of QOL (CareGiver Oncology Quality of Life questionnaire), depression and anxiety symptoms (Hospital Anxiety and Depression Scale), coping skills (Measure of Current Status), and self-efficacy (Cancer Self-Efficacy Scale-Transplant) at enrollment (before HCT) and 60 days after HCT. Causal mediation regression models were used to examine whether changes in coping and self-efficacy mediated intervention effects on QOL as well as depression and anxiety symptoms. Results Improvements in 60-day QOL in patients assigned to BMT-CARE were partially mediated by improved coping and self-efficacy (indirect effect, 6.93; SE, 1.85; 95% CI, 3.71-11.05). Similarly, reductions in 60-day depression and anxiety symptoms were partially mediated by improved coping and self-efficacy (indirect effect for depression, -1.19; SE, 0.42; 95% CI, -2.23 to -0.53; indirect effect for anxiety, -1.46; SE, 0.55; 95% CI, -2.52 to -0.43). Combined improvements in coping and self-efficacy accounted for 67%, 80%, and 39% of the total intervention effects on QOL and depression and anxiety symptoms, respectively. Conclusions Coping and self-efficacy are essential components of a brief psychosocial intervention that improves QOL and mood for caregivers of HCT recipients during the acute recovery period. LAY SUMMARY A 6-session program (BMT-CARE) focused on providing medical information, caregiving skills, and self-care and coping strategies has been previously reported to improve the quality of life and mood of caregivers of hematopoietic stem cell transplantation recipients in comparison with caregivers who receive care as usual. Using statistical models, this study suggests that learning coping skills and improving self-efficacy are the most essential components of this program that likely lead to better quality of life and mood for caregivers.

Access source material through DOI

Effectiveness of online dementia caregivers training programs: A systematic review

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

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

Access source material through DOI

Effect of family and patient centered empowerment program on depression, anxiety and stress in patients with obsessive-compulsive disorder and their caregivers' burden

Background: Considering the importance of family participation in patients' treatment and the positive effects of simultaneous patient and family education, this study was conducted to determine the effect of a family and patient-oriented empowerment program on depression, anxiety, and stress in patients with Obsessive-Compulsive Disorder (OCD) and their caregivers' burden. Materials and Methods: This quasi-experimental study was conducted on 50 OCD patients along with their primary caregivers. The intervention group participated in eight sessions of training, each lasting from 60 to 90 min (twice a week), and the control group received the usual treatment. The Depression, Anxiety and Stress Scale, Maudsley's Obsessive-Compulsive Inventory, Goldberg's General Health Questionnaire, and Zarit's Burden Inventory were used to collect the data before, immediately after and 1 month after the intervention, and then the gathered data were analyzed with t-test and analysis of variance using the Statistical Package for the Social Sciences software, version 21. Results: The changes in the mean scores of depression (F2,48= 21.02, p < 0.001), anxiety (F2,48= 29.72, p < 0.001), and stress (F2,48= 16.52, p < 0.001) of the patients in the intervention group showed significant decrease over time; however, in the control group, there was no significant decrease in the mean scores of depression (F2,48= 1.69, p = 0.19), anxiety (F2,48= 0.47, p = 0.62), and stress (F2,48= 1.09, p = 0.34) over time. The changes in the caregiver's burden score in both groups indicated a significant decrease over time in the intervention group (F2,48= 24.70, p < 0.001) and the control group (F2,48= 33. 30, p < 0.001). Conclusions: The findings of this study revealed that concurrently training the patients and caregivers could reduce the negative emotions of the patients and their caregivers' burden.

Access source material through DOI

Effect of a tailored multidimensional intervention on the care burden among family caregivers of stroke survivors: study protocol for a randomised controlled trial

Introduction Caring for stroke survivors creates high levels of care burden among family caregivers. Previous initiatives at alleviating the care burden have been unsuccessful. The proposed study aims to evaluate the effect of a tailored multidimensional intervention on the care burden among family caregivers of stroke survivors. Based on the perceived needs of family caregivers, this intervention takes into account scientific recommendations to combine three different approaches: skill-building, psychoeducation and peer support. Methods and analysis Using a prospective, randomised, open-label, parallel-group design, 110 family caregivers will be enrolled from Dakahlia Governorate, Egypt between December 2019 and May 2020, and randomly assigned to either the intervention group or the control group. The tailored multidimensional intervention will be administered for 6 months, including three home visits, six home-based telephone calls and one peer support session. The primary outcome is the care burden as measured using the Zarit Burden Interview. Secondary outcomes include changes in the family caregivers' perceived needs (Family Needs Questionnaire-Revised), coping strategies (Brief-Coping Orientation to Problems Experienced) and quality of life (WHO Quality of Life-BREF). Outcomes evaluation will be conducted at baseline (T0), month 3 (T1) and month 6 (T2). Independent t-test will be performed to compare the mean values of study variables between the two groups at both T1 and T2. After adjusting for confounding variables, analysis of covariance will be used to assess the effect of the intervention. In addition, repeated measures analysis of variance will be conducted to assess changes in effect over time. Ethics and dissemination This study was approved by the Research Ethics Committee of the Faculty of Nursing, Mansoura University, Mansoura, Egypt (P.0195). The results will be published in a scientific peer-reviewed journal, and findings will be disseminated at the local and international levels.

Access source material through DOI

Education Experiences of Adult Subjects and Caregivers for Mechanical Insufflation-Exsufflation at Home

BACKGROUND: In 2014, the Ministry of Health of Ontario, Canada, approved a program of public funding for specialist-prescribed mechanical insufflation-exsufflation (MI-E) devices for home use by individuals with neuromuscular respiratory insufficiency. Since 2014, 1,926 MI-E devices have been provided, exceeding device-use projections. Few studies describe the initial and ongoing education and support needs of home MI-E users and their family caregivers. This study aimed to explore the requirements of initial and ongoing education and support for MI-E device use, user confidence, and barriers and facilitators to home MI-E. METHODS: We conducted semi-structured interviews with new (< 6 months) and established (6-48 months) MI-E users and family caregivers. Device users rated their confidence on a numeric rating scale of 1 (not confident) to 10 (very confident). RESULTS: We recruited 14 new and 14 established MI-E users and caregivers (including 9 dyads), and we conducted 28 interviews. Both new and established users were highly confident in use of MI-E (mean +/- SD scores were 8.8 +/- 1.2 and 8.3 +/- 2.1, respectively). Overall, the subjects were satisfied with their initial education, which consisted of a 1-2 h one-on-one session at home or in the clinic with a device demonstration and hands-on practice. Subjects viewed hands-on practice and teaching of caregivers as more beneficial than written materials. Ongoing support for device use was variable. Most subjects indicated a lack of specific follow-up, which resulted in uncertainty about whether they were using the MI-E device correctly or whether MI-E was effective. Facilitators to device utilization were ease of use, initial training, support from formal or informal caregivers, and symptom relief. Barriers were inadequate education on MI-E purpose, technique, and benefit; lack of follow-up; and inadequate knowledge of MI-E by nonspecialist health providers. CONCLUSIONS: The current model of home M1-E education at initiation meets user and caregiver needs. Better ongoing education and follow-up are needed to sustain the benefits through assessment of MI-E technique and its effectiveness.

Access source material through DOI

Assess the effectiveness of planned teaching on knowledge regarding early warning signs and management of Alzheimer's disease among care givers of elderly client

Background: More than four million people in India have some sort of Alzheimer's. This global estimate of 43.8 million people living with Alzheimer's in 2016 in the World Alzheimer's Study is close to an estimated 46 8 million in 2015. A study published on early detection and diagnosis of Alzheimer's by the Alzheimer's association. In the study, they concluded that education years among caregivers is a predictor of Alzheimer's experience. It appears that family members, especially those with lower levels of education, need to have more knowledge of Alzheimer's. Objectives: 1) To assess the existing knowledge regarding early warning signs and it's management of Alzheimer's disease among care giver of elderly client. 2) To evaluate the effectiveness of planned teaching on knowledge regarding early warning signs and it's management of Alzheimer's disease among care giver of elderly client. 3) To associate the knowledge scores with selected demographic variables. Methodology: The pre-test and post-test research design was used. Research approach was Interventional Evaluatory Approach and the sample for the study is general population. The Samples size is 50 will be obtained by using Non-Probability Convenient sampling technique. The setting of the study is selected area of Wardha. Expected Results: The result of the present study is intended to examine the improvement of the knowledge score early warning sign's and their management of Alzheimer's disease among elderly caregivers, hence it will also be evaluated by post-test.

Access source material through DOI

Caring for Our Caregivers: a feasibility study of caregiver preparedness training within inpatient brain injury rehabilitation

Background/aims: Evidence-based inpatient caregiver training may ensure that caregiver needs are met and hospital readmission costs reduced. The aim of this study was to evaluate the feasibility of implementing a caregiver education model, Caring for Our Caregivers, within an inpatient brain injury programme. Methods: A total of 32 adults were admitted to inpatient neurorehabilitation during the 7-week feasibility trial. The three-step Caring for Our Caregivers programme included evidence-based recommendations following a caregiver needs assessment, goal setting and hands-on training. Satisfaction levels and caregiver preparedness were assessed via a survey. Results: The caregiver needs assessment and goal collaboration was completed within 5 days 66% of the time. Results indicated an even distribution of hands-on (47%) and discussion-based (53%) education. Caregivers and staff identified high levels of satisfaction with the programme. Conclusions: Early engagement, collaborative goals and hands-on training of the family caregiver of a client with acquired brain injury during inpatient rehabilitation demonstrated initial feasibility with positive implications for caregiver satisfaction and community discharge. 

Access source material through DOI

The Specialized Early Care for Alzheimer’s method of caring for people with dementia: an investigation of what works and how

Background and rationale SPECAL is a model of care for people with dementia based on a novel conceptualisation of memory and how this changes in dementia. Carers adapt their communication style to prevent distress and promote well‐being for the person with dementia. However, there is limited scientific evidence on the effectiveness of SPECAL. Aim This study explored mechanisms of SPECAL through a qualitative enquiry with family carers. Method Semi‐structured interviews were conducted with family carers who had been coached in SPECAL and applied its principles and practices. Thematic analysis was applied. Findings All participants had found SPECAL helpful in caring for a person with dementia. The core themes of this positive experience were empathy, harmony and resilience. Synthesis of these themes contributes to a proposed model of the mechanisms of SPECAL. Conclusion In applying SPECAL, carers gained an empathetic insight to the feelings of the person with dementia. This empathy leads to a more harmonious environment, which enhances the carer’s resilience.

Access source material through DOI

Simulation to Teach Safe Patient Handling and Mobility for Home Caregivers

Safe patient handling and mobility (SPHM) programs are needed in the home care environment. As patient-lifting technology and devices become more widely available for use in the home setting, caregivers need opportunities to learn how to properly use these devices. Nonmedical caregivers employed by personal support services agencies (PSSAs) and home caregivers have very limited access to opportunities for SPHM training in rural areas of Tennessee. Safe patient handling and mobility training utilizing simulation with an interprofessional approach was developed and provided to 17 nonmedical and family home caregivers. The training was evaluated utilizing Kirkpatrick's Four-Level Training Evaluation Model. Participants completed anonymous surveys immediately following the training and 4 to 6 weeks after the training. Survey I (n = 17): Respondents indicated increased knowledge of safe patient handling (94%) and applied knowledge of safe patient handling in training (90%). Survey II (n = 6): Most respondents (67%) indicated that they had applied the knowledge and skills that they had learned in the training. Two respondents (33%) indicated that they had not yet had the opportunity to apply the knowledge and skills they learned. The survey also showed that all respondents believed that the knowledge and skills they had learned helped to decrease the risk of personal injury and injury to patients. Safe patient handling and mobility training utilizing simulation with an interprofessional approach was effective in promoting safety of nonmedical and family caregivers in the home setting. Based on the success of this program, more training opportunities should be implemented to improve patient and caregiver safety. 

Access source material through DOI

Rural/Urban Differences in Clinical Care Task Learning (RP416)

Objectives Describe preferred learning modalities for clinical care task assistance among general adults and family caregivers. Report differences by rural/urban residence in learning modalities for clinical care task assistance among general adults and family caregivers. Importance. Rural family caregivers for patients with serious illness receive minimal formal training but often perform clinical care tasks far from clinical settings. Evidence-based strategies to prepare caregivers for these tasks are needed. Objective(s). We examined acceptability of clinical care task learning modalities among the general population and family caregivers. Method(s). Data from the population-based National Cancer Institute's 2018 Health Information National Trends were analyzed. Caregivers were those currently providing unpaid care/ making healthcare decisions for someone with a health condition. Main outcomes were learning modalities for clinical care tasks: in-person instruction, phone number/hotline, reading materials, online video instruction, or virtual (live instruction over the internet). Rural/urban residence was defined by Rural/Urban Commuting Area Codes: urban¼1-3, rural¼4-9. Multivariable logistic regression models predicting endorsement (yes/no) of learning modalities were regressed on rural/urban status for the general adult and caregiver populations. Models used sampling weights and adjusted for sociodemographics, and for the caregiver models included duration and hours/week caregiving and caregiver-patient relationship. Results. Analyses included 2847 adults (51% female, 64% White, 15% rural) and 378 caregivers (66% female, 66% White, 16% rural). In both the general and caregiver population, the most preferred modality for training was in-person (73%, 69% respectively) and the least endorsed were hotlines (13%, 18%). Rural general adult respondents reported 45% lower odds of preferring online/video instruction than urban respondents (adjusted OR: 0.55, 95% CI 0.39- 0.78). No other associations were significant in the general adult population and none were significant among caregivers. Conclusion(s). No differences in training preferences for clinical care task instruction between rural and urban family caregivers were found. However, among the general population, rural individuals were less likely to prefer online/video instruction. Impact. Future research to replicate these findings should be conducted to determine whether telehealth supportive care modalities are acceptable for rural populations.

Access source material through DOI

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

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

Access source material through DOI

A Pilot Study of a Comprehensive Financial Navigation Program in Patients With Cancer and Caregivers

Background: Few studies have engaged patients and caregivers in interventions to alleviate financial hardship. We collaborated with Consumer Education and Training Services (CENTS), Patient Advocate Foundation (PAF), and Family Reach (FR) to assess the feasibility of enrolling patient-caregiver dyads in a program that provides financial counseling, insurance navigation, and assistance with medical and cost of living expenses.; Methods: Patients with solid tumors aged ≥18 years and their primary caregiver received a financial education video, monthly contact with a CENTS counselor and PAF case manager for 6 months, and referral to FR for help with unpaid cost of living bills (eg, transportation or housing). Patient financial hardship and caregiver burden were measured using the Comprehensive Score for Financial Toxicity-Patient-Reported Outcomes (COST-PRO) and Caregiver Strain Index (CSI) measures, respectively, at baseline and follow-up.; Results: Thirty patients (median age, 59.5 years; 40% commercially insured) and 18 caregivers (67% spouses) consented (78% dyad participation rate). Many participants faced cancer-related financial hardships prior to enrollment, such as work change or loss (45% of patients; 39% of caregivers) and debt (64% of patients); 39% of caregivers reported high levels of financial burden at enrollment. Subjects received $11,000 in assistance (mean, $772 per household); 66% of subjects with income ≤$50,000 received cost-of-living assistance. COST-PRO and CSI scores did not change significantly.; Conclusions: Patient-caregiver dyads were willing to participate in a financial navigation program that addresses various financial issues, particularly cost of living expenses in lower income participants. Future work should address financial concerns at diagnosis and determine whether doing so improves patient and caregiver outcomes.

Access source material through DOI

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

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

Access source material through DOI

Outside-in or Inside-out? A Randomized Controlled Trial of Two Empowerment Approaches for Family Caregivers of People with Schizophrenia

Training-based intervention such as psychoeducational groups has become increasingly popular to empower family caregivers of people with schizophrenia, yet existing supportive programs for caregivers tend to focus more on the needs of the patients rather than the development of the caregivers. This study aimed to compare the outcomes of a skill-based empowerment psychoeducational group and an inner-resource enhancing empowerment narrative therapy group for family caregivers of people with schizophrenia. We conducted a randomized controlled trial with a longitudinal design. The sample consisted of 132 family caregivers who were randomly assigned to eight sessions of the two groups (i.e. a narrative-based group, or a psychoeducational group), or a control group with delayed treatment. Psychometric scales were administrated throughout the project. Both the psychoeducational group and the narrative group showed significant improvements in family relationships, caregiving burden, and coping skills compared with the control group across the three time points (pretest, posttest, and 2-month follow-up). A statistically significant advancement in coping skills was found in the psychoeducational group. The narrative group outperformed the psychoeducational group and the control group in the enhancement of inner resources, perceived control, and level of hope. The findings call for the need of an integrative empowerment approach that both values the inner strength and unique experiences of the caregivers and at the same time provides them with necessary skills and knowledge in taking care of their family members with schizophrenia. 

Access source material through DOI

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

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

Access source material through DOI

Negative Studies Should Inform Our Research and Care: Engaging Family Members in the Care of the Critically Ill

ICU delirium is a deleterious and pervasive complication of critical illness, occurring in up to 80% of ICU patients ([1]). The reader should conclude from the study by Fiest et al ([11]) that, at this time, the family administered delirium screening tools FAM-CAM and Sour Seven should not replace intensivist administered CAM-ICU or ICDSC. We should understand that the diagnosis of delirium is difficult even with medical training; the recognition of acute delirium may be best identified through individuals most familiar with the patient, albeit with some tools and training. In summary, Fiest et al ([11]) are to be commended on performing a sizable study among critically ill patients to assess the test characteristics of two novel family administered delirium screening tools, the FAM-CAM and Sour Seven. [Extracted from the article]

Access source material through DOI

Interventions to Support Family Caregivers in Pain Management: A Systematic Review

Context: Family caregivers encounter many challenges when managing pain for their loved ones. There is a lack of clear recommendations on how to prepare caregivers in pain management. Objectives: To evaluate existing interventions that support family caregivers in providing pain management to patients with all disease types. Methods: Four electronic databases were systematically searched (PubMed, Cumulative Index for Nursing Allied Health Literature, PsycINFO, and Scopus) using index and keyword methods for articles published before December 2019. The Mixed Methods Appraisal Tool was used to assess the quality. Results: The search identified 6851 studies, and 25 studies met the inclusion criteria. Only two studies exclusively focused on noncancer populations (8%). Three types of interventions were identified in this review: educational interventions, cognitive-behavioral interventions, and technology-based interventions. Both educational and cognitive-behavioral interventions improved family caregiver and patient outcomes, but the content and intensity of these interventions in these studies varied widely, and there was a limited number of randomized clinical trials (68%). Hence, it is unclear what strategies are most effective to prepare family caregivers in pain management. Technology-based interventions were feasible to support family caregivers in providing pain management. Conclusion: Providing adequate pain management training can improve patient and family caregiver outcomes. However, the most effective interventions for family caregivers are still unclear. More rigorous and replicable clinical trials are needed to examine the effects of educational interventions, cognitive-behavioral interventions, and technology-based interventions. Also, more studies are needed in patients with a noncancer diagnosis or multimorbidity. 

Access source material through DOI

How Can the Arts Influence the Attitudes of Dementia Caregivers? A Mixed-Methods Longitudinal Investigation

Background and Objectives Arts activities can improve social connectedness and foster reciprocity between people living with dementia and their caregivers. The extent to which the arts can help shape attitudes towards dementia remains unclear. This paper explores the impact of a 12-week visual arts program "Dementia and Imagination" on the attitudes of family and professional caregivers through a mixed-methods longitudinal investigation, underpinned by a conceptual framework of the arts in dementia care. Research Design and Methods One hundred and forty-six family and professional caregivers were recruited across three settings in England and Wales (residential care homes, a county hospital, and community venues). Quantitative and qualitative data on caregivers' attitudes and perceptions of the impact of the arts program were collected through interviews at three time points. Results Thematic analysis identified four themes shared across the caregivers: (1) Recognizing capabilities , (2) Social connectedness , (3) Improvements to well-being , and (4) Equality and personhood. Two further themes were distinct to family caregivers: (5) Duration of the effects of the art program , and (6) Enriched perspective. The final theme Inspiring professional development was distinct to the professional caregivers. The quantitative analysis found no effect for caregivers' attitude change over time. Family caregivers scored significantly lower than professional caregivers at each of the three time points. Discussion and Implications Art programs have the potential to make visible the capabilities of the people living with dementia, enabling caregivers to see the person behind the condition. This study highlights practice implications for future implementation, such as the role of the arts in dementia care education. 

Access source material through DOI

FAMILIES: an effective healthcare intervention for caregivers of community dwelling people living with dementia

Objectives: Caregiving for a person with dementia (PWD) carries increased risk of poorer health and quality of life. Non-pharmacological interventions improve outcomes for caregivers of PWDs. We evaluated the efficacy of a modified New York University Caregiver Intervention (NYUCI), named FAMILIES, delivered to spousal and non-spousal caregivers of PWDs from diverse etiologies in a reduced number of sessions. Methods: Participants were 122 primary caregivers for community dwelling PWDs in Virginia. The intervention included two individual and four family/group counseling sessions that integrated dementia education, coping skills and behavioral management training, emotional support, and identification of family and community resources. Assessment of depression, caregiver well-being and burden, and caregiver reactions to the behavioral symptoms of dementia (BSD) were completed at baseline, the sixth session, and 6-month follow-up. Results: Symptoms of depression (p <.001) and caregiver burden (p =.001) and caregivers' capacity to effectively manage their reactions to BSD (p =.003), significantly improved at the sixth session. Benefits were maintained at 6-month follow-up. Being married and female predicted improvement in caregiver burden; being male and living in a rural area predicted reduced risk of depression. Caregivers reported that the intervention was helpful and had a positive impact on the PWD. Conclusions: Modifications to the NYUCI did not diminish its efficacy. Caregivers in FAMILIES experienced improvements in depressive symptoms, caregiver burden, and their ability to effectively manage their reactions to BSD. Systemic support for implementing FAMILIES could have a broad impact on caregivers, PWDs, and the healthcare system. 

Access source material through DOI

Exploring the Impact of a Peer-Led Education Group for Loved Ones of Individuals with Borderline Personality Disorder: A Pilot Study

Clinicians have long identified the psychological impacts and objective burdens on family members and caregivers who support loved ones with psychiatric conditions. However, there is a lack of programming available to support families with relatives who have been diagnosed with a personality disorder, and research in this area is scant. The current pilot study evaluated the impact of providing a peer-led education group for loved ones of individuals diagnosed with borderline personality disorder (BPD). A mixed-methods study design was implemented: quantitative self-report scales were used to derive scores of mastery and burden and focus groups gathered qualitative narratives. Data were collected from participants (N = 15) before and after the group intervention, as well as 4 months later. Quantitative results indicated that while participants initially reported a sense of burden in their caregiving role, their self-report of this phenomenon reduced over time following engagement with the group. The focus groups revealed that participants found the group had a positive impact on their well-being as a result of the information, skills acquisition, and support/validation they received. They also noted clinical improvements for their relatives with BPD. This study provides preliminary evidence for the effectiveness of the peer-led education group in supporting families. The results suggest that particular variables such as peer leadership, skills-based learning, and focus on caregiver wellness—rather than on the person with a diagnosis – may explain improved outcomes of this family intervention.

Access source material through DOI

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

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

Access source material through DOI

Evaluation of START (STrAtegies for RelaTives) adapted for carers of people with Lewy body dementia

Family carers of people with Lewy body dementia (LBD) have a particularly high burden of care, as LBD has a faster rate of decline, greater physical dependence and additional neuropsychiatric disturbances compared with other dementias. Despite this, there are no evidence-based support services designed specifically for LBD carers. STrAtegies for RelaTives (START) is an eight-session, individually delivered coping therapy that has been shown in a randomised controlled trial to reduce depression and anxiety symptoms and increase quality of life in carers of people with dementia, with effects lasting several years. We adapted START for LBD, and piloted its use both face-to-face and on the phone with 10 carers to test acceptability and indications of similar effects in this group. Our findings suggest that the therapy was acceptable and feasible using either delivery mode, providing much appreciated and needed strategies, education and support for carers of people with LBD. Trials of effectiveness are now needed. 

Access source material through DOI

Evaluation of a psychoeducational intervention compared with education in people with Parkinson's disease and their informal caregivers: a quasi‐experimental study

Aim: To evaluate the effects of a psychoeducational intervention compared with an education programme to strengthen quality of life, psychosocial adjustment, and coping in people with Parkinson's disease and their informal caregivers. Design: A quasi‐experimental study was performed with repeated measures at baseline, after the intervention and 6 months post‐intervention. Methods: The study was carried out at seven primary care centres from 2015‐2017. A total of 140 people with Parkinson's and 127 informal caregivers were allocated to the experimental and the control groups. The experimental group received a 9‐week psychoeducational intervention, whereas the control group received a 5‐week education programme. Repeated measures ANOVA were used to test differences in quality of life, psychosocial adjustment, and coping between the experimental and control groups and over time. Results: Patients and informal caregivers in both the experimental and control groups showed significantly better psychosocial adjustment at the post‐intervention measurement compared with baseline data. We also found significantly greater quality of life in patients and coping skills in caregivers after the end of the interventions in the experimental and control groups. Nevertheless, no significant differences were identified on the outcomes at the 6‐month post‐intervention measurement. Conclusion: The effect of the psychoeducational intervention was not different from the effect of the education programme. The strategies applied in both interventions followed a group approach led by a multidisciplinary team covering information about PD, healthy lifestyles, and social resources. They might be easily sustained in Primary Care to improve care for people with Parkinson's and informal caregivers.

Access source material through DOI

Effects of strength‐based intervention on health outcomes of family caregivers of persons with dementia: A study protocol

Aims: This study aims at identifying the health effects of a strength‐based intervention on family caregivers of persons with dementia and to explore the underlying mechanism. The perception of family caregivers on the strength‐based intervention will also be explored. Design: This sequential mixed‐method study comprises a double‐blind randomized controlled trial and a descriptive qualitative study. Methods: A group of 372 family caregivers of persons with dementia will be recruited from community settings. They will be randomized to receive the strength‐based intervention or a dementia education program. Based on Antonovksy's theory of salutogenesis, the strength‐based intervention integrates skills of narrative therapy and empowerment strategies. It comprises 14 weekly group‐based sessions and two bi‐weekly follow‐up telephone calls. The education program serves as the control intervention. Validated instruments are used to measure sense of coherence, coping, caregiver burden, and health‐related quality of life at baseline, 14 weeks, and 22 weeks. Mixed‐effects models and path analysis will be used to identify the treatment effect and the mediating mechanism. A subsample of 30 caregivers who report differential changes in the health outcome will be engaged in qualitative interviews. The study was funded in 2017. Discussion: This study marks the first attempt to adopt a theory‐driven strength‐based approach to improve the health outcomes of family caregivers of persons with dementia. The stringent and comprehensive evaluation will inform its effects and the underlying mechanism. Impact: This study will have important theoretical and public health implications. Theoretically, the study will enhance understanding of Antonovsky's theory of salutogenesis by examining the modifiability of sense of coherence and the way it enhances health‐related outcomes. In terms of public health implications, the strength‐based intervention focusing on optimizing the inner strength can provide a new paradigm to promote the adjustment of family caregivers of persons with dementia. Trial Registration: This project was registered in the Clinical Trials Registry of the Centre for Clinical Research and Biostatistics (registration number: CUHK_CCRB00551; date registered: 6 April 2017).

Access source material through DOI

Effects of an educational intervention on health-related quality of life among family caregivers of people with dementia with a Turkish or Moroccan immigrant background: Insights from a cluster randomised controlled trial

Objective: Gaining understanding of the health-related quality of life (HRQL) of family caregivers of people with dementia with Turkish or Moroccan immigrant backgrounds and to examine whether an educational peer group intervention can improve HRQL.; Methods: Understanding of HRQL and associated variables was obtained by multiple linear regression analyses. The effects of the intervention on HRQL were assessed in multilevel analyses using data collected before the start (baseline), directly after the intervention (one to two weeks after baseline) and three months after the start of the intervention. The intervention (two interactive group sessions) entailed providing information about dementia and care/support options.; Results: At baseline (n = 319), HRQL was moderately and significantly associated with migration background, gender, self-perceived pressure from informal care and the formal and informal support received (p < .05). The intervention had a small effect on emotional wellbeing directly after the intervention (p < .05) and on perceived general health status three months after (p < .05).; Conclusion: Culturally sensitive peer group education on dementia and care/support options can to some extent enhance HRQL among family caregivers in the short term.; Practice Implications: The intervention as described in this study is recommended for supporting family caregivers of people with dementia with Turkish or Moroccan backgrounds. 

Access source material through DOI

Effects of a Death Education Intervention for Older People with Chronic Disease and Family Caregivers: A Quasi-Experimental Study

To investigate the effectiveness of a structured death education program for older adults with chronic illness and their family caregivers. This study adopted two-group, nonrandomized quasi-experimental design. Patient–caregiver dyads in the intervention group (N = 40 dyads) engaged in the death education program at the bedside once a week for 5 weeks, and were compared with participants (N = 40 dyads) in the control group who received usual health education. The program consisted of five sessions based on the Interaction Model of Client Health Behavior. Death attitude, death competence, well-being, family function, and satisfaction were measured at baseline (T0), immediately after the intervention (T1), and 1 month later (T2). Data collection was conducted from July 30, 2019, to December 30, 2019. The intention-to-treat analysis The intention-to-treat analysis of between groups at 1-month follow-up revealed that the intervention group had greater decreases in the fear of death (p =.002, 95% CI -2.53, -0.47; p <.001, 95% CI -3.61, -1.65) and death avoidance (p <.001, 95% CI -3.46, -1.84; p <.001, 95% CI -3.89, -2.43), had greater increases in the neutral acceptance (p =.032, 95% CI 0.05, 1.38; p <.001, 95% CI 0.99, 2.56) and death competence (p <.001, 95% CI 4.10, 8.01; p <.001, 95% CI 7.80, 12.11) in patients and caregivers, respectively. There were significant intergroup differences over time for patient well-being of (p <.001, 95% CI 3.06, 9.74) and satisfaction of (p <.001, 95% CI 2.01, 4.59). Results were consistent with the results from the sensitivity analysis. This study demonstrated the feasibility and benefits of death education in hospitals and provided an implementation plan for nursing professionals. Nurses should consider providing death education for older adults with chronic diseases and their families to promote the development of palliative care and the quality of end-of-life.

Access source material through DOI

Effectiveness of Powerful Tools for Caregivers on Caregiver Burden and on Care Recipient Behavioral and Psychological Symptoms of Dementia: A Randomized Controlled Trial

The aim of this study was to evaluate the effectiveness of a psychoeducational intervention, Powerful Tools for Caregivers (PTC), for family caregivers of individuals with dementia. A pragmatic, 2-arm randomized controlled trial compared the PTC intervention, as delivered in practice, to usual care. Participants randomized to usual care functioned as a control group and then received the PTC intervention. PTC is a 6-week manualized program that includes weekly 2-hour classes in a group setting facilitated by 2 trained and certified leaders. The educational program helps caregivers to enhance self-care practices and manage emotional distress. Two stakeholder organizations delivered the intervention in community settings. Participants were family caregivers of individuals with dementia recruited from the community in Florida. Primary outcomes were caregiver burden and behavioral and psychological symptoms of dementia of the care recipient. Secondary outcomes included caregiver depressive symptoms, self-efficacy, self-rated health, and life satisfaction. Measures were collected at baseline (n = 60 participants), postintervention (n = 55), and at 6-week follow-up (n = 44). Intent-to-treat analyses found PTC reduced caregiver burden (d = −0.48) and depressive symptoms (d = −0.53), and increased self-confidence (d = 0.68), but found no significant benefit for behavioral and psychological symptoms of dementia in care recipients. PTC was rated highly by participants and program attrition was low, with 94% of caregivers completing at least 4 of the 6 classes. Although no significant effects were found for behavioral and psychological symptoms of dementia, this trial supports the effectiveness of PTC to improve caregiver outcomes as delivered in the community. 

Access source material through DOI

Effect of Strengthening Family Coping Resources on Emotion Regulation of Family Caregivers of Patients with Schizophrenia

Background: Strengthening the coping resources as an instruction for anxiety-regulation may affect the emotion-regulation of families. Regarding the significant role of families in health of these patients, it seems that interference in strengthening coping resources affects their emotion-regulation. Aim: This study aimed to determine the effect of strengthening family coping resources on the emotion-regulation of schizophrenic patients' caregivers. Method: This quasi-experimental research was conducted on families with hospitalized schizophrenic patients in one of the most prominent psychiatric centers in the Northeast of Iran in 2018. The participants were assigned to intervention (n=29) and control (n=31) groups. A short revised form of Emotion-Regulation Questionnaire was utilized as data collection tool. The intervention based on strengthening family coping resources (SFCR) was administered in three modules and 15 group sessions (groups of 6-8 individuals) according to the instructions of the multi-family model of Kisser et al. On the other hand, the controls received routine cares in hospital wards. The data were analyzed in SPSS software version (16) using independent and paired t-tests. Results: The groups were homogenous in terms of demographic characteristics. The result of independent t-test demonstrated a significant difference in the mean score of revaluation (P=0.001) and suppression (p=0.001) in the intervention group, compared to the control group, after the intervention. Implications for Practice: This intervention can guide clinicians on how to implement a familycentered care program to reduce the burden of caring schizophrenic patients through gaining family support in the efficient care of these patients.

Access source material through DOI

Effect of group counseling on the attitude among the family caregivers of patients with mental disorders

Background and Aim: Incorrect beliefs and negative thinking of society and in the family affect psychiatric patients over the process of treatment, care and recovery. The aim of this study was to investigate the effect of group counseling on the attitude of family caregivers in patients with mental disorders. Materials and Methods: This quasi experimental study was conducted in psychiatric wards of Farshchian Hospital in Hamadan in Iran in 2018. 49 family caregivers were randomly selected to the study. Data were collected using a researcher-made mental attitude questionnaire. At first, family caregivers' attitudes were evaluated; then, they held 4 groups and for each group done 4 sessions of 60 minutes of group counseling. The questionnaire was completed again by the family caregivers immediately after the intervention. Data analysis was done using SPSS software version 16 using descriptive and inferential statistics. Results: The mean of the attitude of the family caregivers before the group counseling was (12.59 ± 13.49). The mean of the attitude score of family caregivers after group counseling was (24.45 ± 8.32). Paired t-test showed that the attitude score of caregivers increased significantly after group counseling (p <0.001). Discussion and Conclusion: The results of the study indicate that group counseling improves the attitude of family caregivers towards mental illness. Therefore, it is recommended that psychiatric nurses use this method to educate families of mental patients. 

Access source material through DOI

The Effect of Emotion Regulation Training on Stress, Anxiety, and Depression in Family Caregivers of Patients with Schizophrenia: A Randomized Controlled Trial

Schizophrenia is the most severe chronic disabling psychiatric disorder that needs long term care in various aspects. Therefore, the family's emotional atmosphere caused by the disease affects the condition of the patients' caregivers. This study aimed to investigate the effect of emotional regulation training on stress, anxiety, and depression in caregivers of patients with schizophrenia. The study was a randomized controlled trial. Seventy caregivers of patients with schizophrenia randomly assigned to a group that received emotion regulation training and a control group. The intervention group was trained about emotion regulation during eight 90-min sessions. The participants completed the Depression, Anxiety and Stress Scales-21 questionnaire before and one month after the intervention. The results showed that stress, anxiety and depression scores significantly reduced in the intervention group compared to the control group. Emotional regulation training with cognitive methods has significantly reduced the anxiety, stress, and depression of caregivers of patients with schizophrenia. 

Access source material through DOI

The effect of family-centered empowerment program on the family caregiver burden and the activities of daily living of Iranian patients with stroke: a randomized controlled trial study

Dependence of stroke survivors regarding the ability to perform activities of daily living imposes a burden on family caregivers. The study evaluated the effect of the family-centered empowerment program on the ability of Iranian patients with stroke to perform activities of daily living, as well as on family caregiver burden. In this randomized controlled trial study, a total of 90 pairs of patients with stroke and their family caregivers was selected and randomly assigned to the intervention or control groups. Patients and their family caregivers participated in four family-centered empowerment program sessions over four consecutive days while the patient was hospitalized. The difference in the ability of patients with stroke in the intervention and control groups to perform activities of daily living was not significant 2 weeks after the intervention. However, the ability of patients with stroke in the intervention group to perform activities of daily living increased significantly 2 months after the intervention compared with the control group: 66 ± 35.95 and 51.31 ± 36.28, respectively (p = 0.047). Two weeks after the intervention, the family caregiver burden significantly decreased in the intervention group (29.55 ± 15.38) compared with the control group (38.77 ± 18.53 and p = 0.012). The burden in the intervention group also decreased 2 months after the intervention compared with the control group: 22.95 ± 15.68 and 36.11 ± 18.88, respectively (p < 0.001). Nurses can use the family-centered empowerment program to improve the quality of life of patients with stroke, and to reduce the burden of family caregivers.

Access source material through DOI

Development and validation a nursing care protocol with educational interventions for family caregivers of elderly people after stroke

Objective: development and validation the content of a nursing care protocol with educational interventions for family caregivers of elderly people after stroke. Methods: a methodological study conducted in three stages: (1) protocol development through literature review; (2) pretest with multidisciplinary team, analyzed with literature articulation; (3) protocol validation by the Delphi Technique. Results: the protocol was structured in the following areas: Disease Guidelines; Emotional Support; Using the Health Care Network; Diet; Airways; Medications; Hygiene; Skin Care; Disposal; Dressing/Undressing; Positioning and Transfer; Fall Prevention. In the pretest, eight experts assessed protocol clarity and content. In validation, there were two rounds by the Delphi Technique. The validated protocol consisted of 12 domains, containing 42 items and 240 care guidelines. Conclusion: the protocol qualifies the transition of care after hospital discharge assisting nurses in home care practice.

Access source material through DOI

Development and Evaluation of a Post-Hip Fracture Instructional Workshop for Caregivers

Background and Purpose: A hip fracture is an unexpected traumatic event. Caregivers of patients with an acute hip fracture have only short time to learn the new skills of postoperative care and handling of the patient. This sudden responsibility changes the life of the caregivers who perceive a higher level of preoccupation about the care of their family member/friend. The objective of this study was to develop and test feasibility for a post-hip fracture inpatient instructional workshop for caregivers of older adults with hip fracture and to establish their knowledge of hip fracture recovery and perceptions of the utility and satisfaction with the workshop. Methods: This 2-part study was conducted at the University Hospital of Granada, Spain, from September 2016 to April 2017. We invited caregivers of patients (60 years of age or older) hospitalized for a surgically treated fall-related hip fracture to attend an informational and skill development hospital-based workshop (60-90 minutes in duration) on post-discharge management strategies. Following the workshop, we invited caregivers to complete a questionnaire to obtain their knowledge about care after hip fracture and their perceived concerns. Furthermore, we requested that they provide feedback on workshop utility and satisfaction (0-10 points) and suggestions for improving the workshop. Results and Discussion: We delivered 42 workshops over an 8 month period. One hundred three caregivers attended the sessions and enrolled in the study, mean (SD) age: 52.1 (12.8) years. Sixty-nine percent of the caregivers were women. Caregivers' main concern was apprehension for delivering physical care to their family member/friend (75%), followed by lack of time (42%). Caregivers who were employed were 3.16 times as likely to be concerned about time availability to provide care for their family member/friend. The median (Q1, Q3) of both workshop utility and satisfaction was 10 (10, 10), minimum-maximum: 7 to 10. Conclusions: Caregivers in this study stated that the workshop was useful and satisfactory. Because caregivers play such a vital role in recovery after hip fracture, providing knowledge and skill development as part of health care delivery may support more person-centered care.

Access source material through DOI

Developing Service User Skills in Co-Production of Research: Course Development and Evaluation

Purpose : The purpose of this article is to enhance understanding of the increasing importance of service user and carer involvement in social work research. The paper outlines actions taken to develop knowledge and skills at post-qualifying level. Method : In 2016 three postgraduate modules on research methods and evidence-into-practice for service users and carers were created and taught jointly with existing parallel post-qualifying modules for experienced social workers. Over a three-year period 2016-2019 modular assessments; pre and post-testing of knowledge and self-efficacy; regular participant feedback sheets; and end-of-course reflections were undertaken. Results : Qualitative feedback indicated that the classroom experience was regarded positively. Valuable literature reviews and projects were produced which have the potential to contribute to transferring knowledge into practice. Though small in scale and using non-validated tools, increased mean scores were recorded on both Test of Knowledge (3.97; p <.001) and Self Efficacy (478.8 ( p <.001) showing promise. Formal measures, exam results, and informal feedback demonstrate the success of the initiative as a means of enhancing a wider understanding of user participation in the research process. Discussion: Demonstrating how well-equipped service users and carers are to be more effective on research advisory panels and grant committees will take more time. Conclusion: Providing teaching on research methods for service users jointly with experienced social workers shows potential for developing coproduction of social care research and translating evidence into practice.

Access source material through DOI

Caregiver-Guided Pain Management for Advanced Cancer: Results of a Randomized Controlled Trial

Objectives Explain the potential benefits of a caregiver-assisted pain coping skills training intervention. Describe the relative benefits of the caregiver-assisted pain coping skills intervention compared to enhanced treatment-as-usual for patients with advanced cancer and their family caregivers. Describe challenges of delivering a behavioral intervention to patients with serious illness. Importance. Pain is common among patients with advanced cancer and causes distress for both patients and their caregivers. Cognitive-behavioral pain coping skills interventions can improve pain and pain-related outcomes but have rarely been tested in advanced cancer. Objective(s). To conduct a multi-site RCT testing the efficacy of a caregiver-assisted pain coping skills training (CG-CST) intervention for advanced cancer. Method(s). Patients with stage III-IV cancer and moderate-severe pain and their family caregivers were recruited from four academic medical centers and one hospice/palliative care organization. They were randomized to CG-CST or enhanced treatmentas-usual (E-TAU). Dyads in both conditions received educational resources on pain management; those in CG-CST received three 60-minute sessions via videoconference. Caregiver outcomes (self-efficacy for helping the patient manage pain, caregiver strain, caregiving satisfaction, psychological distress) and patient outcomes (self-efficacy for pain management, pain intensity and interference, psychological distress) were collected at baseline and post-intervention. Results. 202 dyads enrolled and were randomized to E-TAU (N¼101) or CG-CST (N¼101). 171 dyads (92 E-TAU, 79 CG-CST) completed post-intervention assessments. Mixed models for repeated measures were used to estimate pre-post changes in outcomes; effect sizes (ES) for within and between group changes were calculated. Both conditions led to comparable improvements in patient self-efficacy (E-TAU/CG-CST ES¼0.42/0.43), caregiver self-efficacy (E-TAU/CGCST ES¼0.43/0.42), patient pain severity (E-TAU/ CG-CST ES¼-0.27/-0.32), pain interference (E-TAU/ CG-CST ES¼-0.44/0.42), and patient psychological distress (E-TAU/CG-CST ES¼-0.31/-0.27) (all p's<.02). Compared to E-TAU, CG-CST improved caregiving satisfaction (differential ES¼0.41, p<.01) and tended to improve caregiver anxiety (differential ES¼-0.30, p¼.06). Conclusion(s). Contrary to expectations, the CGCST intervention did not improve pain outcomes relative to enhanced TAU, although it did lead to improved caregiving satisfaction and decreased caregiver anxiety. Differential retention in the study arms and temporal improvement trends may have impacted findings. Impact. Despite the promise of behavioral pain coping interventions, challenges in retaining seriously ill patients in such interventions may dampen their effects.

Access source material through DOI

Building Capacity for Caregiver Education in Yap, Micronesia

The US Affiliated Pacific Islands have an urgent need for family caregiver education to prevent caregiver burnout and strengthen the existing culture where seniors are cared for at home by their families. The Pacific Islands Geriatric Education Center conducted a 32-hour family caregiver train-the-trainer workshop in partnership with the Yap Department of Health Services and the Yap Area Health Education Center (AHEC) from October 16 - 20, 2017. Twenty-seven participants including community health workers, peer educators, health assistants, nurses, and physicians were trained as instructors. Confidence in caregiving increased following the training and feedback was extremely positive. Competence in geriatric syndromes was improved after attending the workshop (P < .001). Lessons from the field revealed an immense value of adding home visits to the training practicum as well as the need to translate caregiving handouts into the outer island languages. Yap AHEC is committed to offering this course as part of caregiver education at the hospital and in the community. 

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

Biopsychosocial intervention for stroke carers (BISC): results of a feasibility randomised controlled trial and nested qualitative interview study

Objective: To determine the feasibility of recruiting to and delivering a biopsychosocial intervention for carers of stroke survivors. Design: Feasibility randomised controlled study with nested qualitative interview study. Setting: The intervention was delivered in the community in either a group or one-to-one format. Subjects: Carers and stroke survivors within one year of stroke onset. Interventions: A carer targeted intervention delivered by a research psychologist in six structured two-hour sessions or usual care control. The intervention combined education about the biological, psychological and social effects of stroke with strategies and techniques focussing on adjustment to stroke and caregiving. Stroke survivors in both groups received baseline and follow-up assessment but no intervention. Main Outcome: Recruitment rate, study attrition, fidelity of intervention delivery, acceptability and sensitivity of outcome measures used (health related quality of life, anxiety and depression and carer burden six months after randomisation). Results: Of the 257 carers approached, 41 consented. Six withdrew before randomisation. Eighteen participants were randomised to receive the intervention and 17 to usual care. Attendance at sessions was greater when treated one-to-one. Feedback interviews suggested that participants found the intervention acceptable and peer support particularly helpful in normalising their feelings. Thirty participants were assessed at follow-up with improvements from baseline on all health measures for both groups. Conclusions: Our results suggest that a biopsychosocial intervention was acceptable to carers and can be delivered in group and one-to-one formats. Timing of approach and mode of intervention delivery is critical and requires tailoring to the carers individual needs. 

Access source material through DOI

Benefits of mindful compassion for staff, patients and carers

Aims and objective: This study intended to examine the long-term effect on the emotional wellbeing and behaviour change of staff, patients and carers who attended a one-day Macmillan course on mindful compassion. Methods: People who attended mindful compassion study days in 2016 and 2017 were invited to participate in an online questionnaire in 2019. Results: Nearly 50% (99) of the 200 people who received the invitation completed the survey. Immediately after the course, 38.78% practised mindful compassion as and when required, 28.57% practised when possible, 15.31% practised daily, 13.27% practised 3–4 times a week and 3.5% were not practising. More than half (56%) used mindful compassion to help with home and work life, relationships and family. Two or three years after the course, when asked again, 15.31% of those who answered still practised daily, 11.22% practised 3–4 times a week, 23.47% practised as and when possible and 42.86% did so as needed; 7.14% had not continued practising. Conclusion: Training in mindful compassion benefits patients and carers. In both the short and long terms, mindful compassion was found to reduce anxiety, aid sleep, improve pain management and help people feel more empowered, calm and relaxed. It also helped people cope with stressful situations, gave them time for themselves and enabled them to become much more focused.

Access source material through DOI

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

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

Access source material through DOI

Adapting a Palliative Care Literacy Intervention for Use in Israel (GP787)

Objectives Describe growth of palliative care in Israel and the need to increased palliative care literacy among patients and family caregivers. Describe the process of adapting the Managing Cancer Care intervention for use in Israel. Summarize recommended expert panel, patient, and family caregiver edits to the Managing Cancer Care intervention. Importance. Although palliative care (PC) is growing in Israel, few receive PC due to lack of knowledge and availability of services. Increased PC literacy and use is needed to improve health outcomes. Objective(s). Adapt a PC-focused cancer self-management intervention to improve PC literacy and use in Israel. Method(s). Managing Cancer Care (MCC) consists of two interventions, MCC-PTfor patients and MCCCGfor family caregivers. Both have improved knowledge of PC and its integration into cancer self-management among users in Connecticut. To adapt MCC for use in Israel, we professionally translated MCC from English to Hebrew. An expert panel of Israeli clinicians (n¼3) edited modules for cultural relevance. We conducted cognitive interviews with patients and family caregivers at an oncology center in northern Israel to inform further edits. Inclusion criteria were patients and family caregivers managing Stage III/IV breast cancer, aged 18+, Hebrew- or English-speaking, and receiving any type of treatment. Participants provided demographic/clinical information and received the appropriate version of MCC. Interviews on intervention content and format occurred 2-4 weeks later. We analyzed interview data using content analysis. Results. Following expert review, we revised MCC content specific to the U.S. health care system (e.g., hospice benefit) and American culture/language (e.g., no Hebrew word for ''multidisciplinary''). Patients' (n¼13) mean age was 49 (range 36-69). 85% had Stage IV disease with an average 6 years since diagnosis. Caregivers' (n¼10) mean age was 57 (range 47-66) with 60% male. 23% of patients and 30% of caregivers correctly defined PC. 30% of patients had seen a PC physician. MCC was reported by patients and caregivers as topically relevant (80%,70%), attractive (70%,80%), and culturally appropriate, and suggested more Israel-specific content on PC resources. Conclusion(s). MCC appears acceptable to Israeli users and warrants pilot-testing. Impact. PC infrastructure in Israel may grow in response to increased PC literacy and requests for PC. We are collaborating with Israel's Ministry of Health to further study objectives.

Access source material through DOI

A Pilot Study on the Efficacy of Stress Relief Programs for Family Caregivers of Older People with Dementia

The aim of this study was to evaluate the effects of stress-relief programs on positive aspects of caregiving and depression among caregivers of older people with dementia. A quasi-experimental design was employed. Participants in the experimental group received a 8-week period and 120 minutes each session cognitive-behavioral therapy. Participants in the control group received standard health education. Stress relief programs may alleviate depression and increase positive aspects of caregiving among family caregivers of older people with dementia. These findings will help health professionals to implement stress-relief strategies for family caregivers of older people with dementia, or to use those strategies to increase positive aspects of caregiving, or to alleviate depression in caregivers.

Access source material through DOI

An empowerment program for family caregivers of people with dementia

Objectives: Family caregivers of people with dementia (PWD) often feel powerless and experience decreased well-being. Our aim was to develop an intervention program based on the caregiver empowerment model (CEM) and apply it with the Korean caregivers to evaluate its effects. Design and Sample: The study population comprised 115 family caregivers (experimental group, n = 35, control group 1, n = 40, control group 2, n = 40). Methods: Using an experimental design with two control groups. The experimental group received a 12-week program including intensive counseling, education, and telephone calls. The control group 1 (CG1) received usual service. The control group 2 (CG2) was provided with a handbook during the first week. A mixed-effects model was used to clarify longitudinal changes in participants' outcomes. Results: The experimental group showed significantly increased caregiving appraisal (effect size in CG1 = −7.25; CG2 = −5.63), caregiving attitude (CG1 = −21.47; CG2 = −17.79), self-efficacy (CG1 = −12.42; CG2 = −10.12), and well-being (CG1 = −4.33; CG2 = −2.35) after the program. Conclusions: The empowerment program can be used to promote family caregivers' positive adaptation and to help caregivers who care for PWD to effectively cope with their problems. 

Access source material through DOI

Health literacy and health communication training for underserved patients and informal family caregivers

Communication training effectiveness for health care providers has been well documented, however patient and caregiver training may present a prime opportunity to mitigate communication challenges that provider-only training cannot. The aim of this study is to describe the multi-step process of adapting a national, provider, health communication training program (COMFORT) for use with underserved patients and caregivers who (1) are not regular consumers within health care systems and/or (2) do not have ready access to providers. We examine three iterations of training feedback for implementation in future training. 

Access source material through DOI

Translating an Evidence-based Multicomponent Intervention for Older Adults With Dementia and Caregivers

Background and Objectives Effective community-based programs to maintain health and well-being of adults with dementia are needed. This article describes the translation, implementation, and effectiveness of a multicomponent exercise plus behavioral/psychosocial intervention (Reducing Disability in Alzheimer's Disease-NorthWest [RDAD-NW]) conducted by staff in regional Area Agencies on Aging (AAAs). Research Design and Methods Staggered multiple baseline design was used; 10 AAAs, 20 case managers, and 255 community-residing persons with dementia (PWDs), and family caregivers were enrolled. RDAD-NW was conducted in-home over 6 weeks with aerobic/endurance, strength, and balance/flexibility exercises, dementia education, training to increase pleasant events, and activator-behavior-consequence problem-solving approach. Outcomes included case manager treatment fidelity, and caregiver/PWD physical activity, restricted activity days, physical functioning, quality of life, and affect. Results RDAD-NW was successfully translated and implemented by AAA agency staff through their usual service provision mechanisms. Staff responded positively and delivered the program with a high degree of fidelity. Caregiver/PWD dyads also responded favorably engaging in both exercise and behavioral/psychosocial portions of the program. A total of 207 dyads (81%) completed the intervention and 140 (55%) completed the 13-month follow-up. PWD physical activity increased significantly pre- to posttreatment (p < .001, ES = .54), and 13 months (p < .01, ES = .21). Quality of life of PWD increased significantly pre- to posttreatment (p < .001, ES = .29); caregiver depression improved pre- to posttreatment (p = .01, ES = −.18). Discussion and Implications RDAD-NW was successfully translated and implemented by AAA case managers and resulted in increased physical activity and improved behavioral and emotional outcomes of caregiver/PWDs. Results support continued dissemination and implementation of RDAD-NW.

Access source material through DOI

‘Living together with dementia’ – Conceptual validation of training programme for family caregivers: Innovative practice

This article presents results from a conceptual validation of the programme ‘Living Together with Dementia’, through an e-Delphi study carried out during April/May, 2015 with 26 Portuguese and Spanish experts. The programme consists of seven individual weekly sessions and two group sessions over a seven-week period. It covers dementia, communication and behaviour; demands and expectations of the caregiver role; basic activities of daily living; coping and problem solving strategies; physical and mental health of the caregiver and community support. The programme methods mainly consist of discussion sessions, practical examples/simulations and skill training. 

Access source material through DOI

Identifying treatment effects of an informal caregiver education intervention to increase days in the community and decrease caregiver distress: a machine-learning secondary analysis of subgroup effects in the HI-FIVES randomized clinical trial

Background Informal caregivers report substantial burden and depressive symptoms which predict higher rates of patient institutionalization. While caregiver education interventions may reduce caregiver distress and decrease the use of long-term institutional care, evidence is mixed. Inconsistent findings across studies may be the result of reporting average treatment effects which do not account for how effects differ by participant characteristics. We apply a machine-learning approach to randomized clinical trial (RCT) data of the Helping Invested Family Members Improve Veteran's Experiences Study (HI-FIVES) intervention to explore how intervention effects vary by caregiver and patient characteristics. Methods We used model-based recursive partitioning models. Caregivers of community-residing older adult US veterans with functional or cognitive impairment at a single VA Medical Center site were randomized to receive HI-FIVES (n = 118) vs. usual care (n = 123). The outcomes included cumulative days not in the community and caregiver depressive symptoms assessed at 12 months post intervention. Potential moderating characteristics were: veteran age, caregiver age, caregiver ethnicity and race, relationship satisfaction, caregiver burden, perceived financial strain, caregiver depressive symptoms, and patient risk score. Results The effect of HI-FIVES on days not at home was moderated by caregiver burden (p < 0.001); treatment effects were higher for caregivers with a Zarit Burden Scale score <= 28. Caregivers with lower baseline Center for Epidemiologic Studies Depression Scale (CESD-10) scores (<= 8) had slightly lower CESD-10 scores at follow-up (p < 0.001). Conclusions Family caregiver education interventions may be less beneficial for highly burdened and distressed caregivers; these caregivers may require a more tailored approach that involves assessing caregiver needs and developing personalized approaches.

Access source material through DOI

Oral Health Assessment by Lay Personnel for Older Adults

Oral health is an often-undervalued contributor to overall health. The literature, however, underscores the myriad of systemic diseases influenced by oral health, including type II diabetes, heart disease, and atherosclerosis. Thus, assessments of oral health, called oral screenings, have a significant role in assessing risk of disease, managing disease, and even improving disease by oral care. Here we present a method to assess oral health quickly and consistently across time. The protocol is simple enough for non-oral health professionals such as students, family, and caregivers. Useful for any age of patient, the method is particularly key for older individuals who are often at risk of inflammation and chronic disease. Components of the method include existing oral health assessment scales and inventories, which are combined to produce a comprehensive assessment of oral health. Thus, oral characteristics assessed include intraoral and extraoral structures, soft and hard tissues, natural and artificial teeth, plaque, oral functions such as swallowing, and the impact this oral health status has on the patient's quality of life. Advantages of this method include its inclusion of measures and perceptions of both the observer and patient, and its ability to track changes in oral health over time. Results acquired are quantitative totals of questionnaire and oral screening items, which can be summed for an oral health status score. The scores of successive oral screenings can be used to track the progression of oral health across time and guide recommendations for both oral and overall health care.

Access source material through DOI

Adapting Project RED to Skilled Nursing Facilities

This article describes our recommendation for adapting hospital-based RED (Reengineered Discharge) processes to skilled nursing facilities (SNFs). Using focus groups, the SNFs’ discharge processes were assessed twice additionally, research staff then recorded field notes documenting discussions about facility discharge processes as they related to RED processes. Data were systematically analyzed using thematic analysis to identify recommendations for adapting RED to the SNF setting including (a) rapidly identifying, involving, and preparing family/caregivers to implement a patient focused SNF discharge plan; (b) reconnecting patients quickly to primary care providers; and (c) educating patients at discharge about their target health condition, medications, and impact of changes on other chronic health needs. Limited SNF staff capacity and corporate-level policies limited adoption of some key RED components. Transitional care processes such as RED, developed to avoid discharge problems, can be adapted for SNFs to improve their discharges.

Access source material through DOI

Carer administration of as-needed subcutaneous medication for breakthrough symptoms in people dying at home: the CARiAD feasibility RCT

BACKGROUND: Most people who are dying want to be cared for at home, but only half of them achieve this. The likelihood of a home death often depends on the availability of able and willing lay carers. When people who are dying are unable to take oral medication, injectable medication is used. When top-up medication is required, a health-care professional travels to the dying person's home, which may delay symptom relief. The administration of subcutaneous medication by lay carers, although not widespread UK practice, has proven to be key in achieving better symptom control for those dying at home in other countries. OBJECTIVES: To determine if carer administration of as-needed subcutaneous medication for common breakthrough symptoms in people dying at home is feasible and acceptable in the UK, and if it would be feasible to test this intervention in a future definitive randomised controlled trial. DESIGN: We conducted a two-arm, parallel-group, individually randomised, open pilot trial of the intervention versus usual care, with a 1 : 1 allocation ratio, using convergent mixed methods. SETTING: Home-based care without 24/7 paid care provision, in three UK sites. PARTICIPANTS: Participants were dyads of adult patients and carers: patients in the last weeks of their life who wished to die at home and lay carers who were willing to be trained to give subcutaneous medication. Strict risk assessment criteria needed to be met before approach, including known history of substance abuse or carer ability to be trained to competency. INTERVENTION: Intervention-group carers received training by local nurses using a manualised training package. MAIN OUTCOME MEASURES: Quantitative data were collected at baseline and 6-8 weeks post bereavement and via carer diaries. Interviews with carers and health-care professionals explored attitudes to, experiences of and preferences for giving subcutaneous medication and experience of trial processes. The main outcomes of interest were feasibility, acceptability, recruitment rates, attrition and selection of the most appropriate outcome measures. RESULTS: In total, 40 out of 101 eligible dyads were recruited (39.6%), which met the feasibility criterion of recruiting > 30% of eligible dyads. The expected recruitment target (≈50 dyads) was not reached, as fewer than expected participants were identified. Although the overall retention rate was 55% (22/40), this was substantially unbalanced [30% (6/20) usual care and 80% (16/20) intervention]. The feasibility criterion of > 40% retention was, therefore, considered not met. A total of 12 carers (intervention, n = 10; usual care, n = 2) and 20 health-care professionals were interviewed. The intervention was considered acceptable, feasible and safe in the small study population. The context of the feasibility study was not ideal, as district nurses were seriously overstretched and unfamiliar with research methods. A disparity in readiness to consider the intervention was demonstrated between carers and health-care professionals. Findings showed that there were methodological and ethics issues pertaining to researching last days of life care. CONCLUSION: The success of a future definitive trial is uncertain because of equivocal results in the progression criteria, particularly poor recruitment overall and a low retention rate in the usual-care group. Future work regarding the intervention should include understanding the context of UK areas where this has been adopted, ascertaining wider public views and exploring health-care professional views on burden and risk in the NHS context. There should be consideration of the need for national policy and of the most appropriate quantitative outcome measures to use. This will help to ascertain if there are unanswered questions to be studied in a trial. TRIAL REGISTRATION: Current Controlled Trials ISRCTN11211024. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology A sessment; Vol. 24, No. 25. See the NIHR Journals Library website for further project information

Access source material through DOI

Massive Open Online Courses: enhancing caregiver education and support about dementia care towards and at end of life

As the ageing population grows globally, the need for informal care-usually provided by family and friends-will continue to increase. Numbers of people with dementia also continue to rise, and much of their care will be provided by relatives. As such, more people who may themselves be older, will take on such caring roles. Consequently, more carers are likely to have education and support needs. Amidst government recognition of the need to provide good quality, person-centred education and support to carers, there are tensions between the potential for such provision to be resource intensive and whether existing services have the capacity to meet the needs of carers. Massive Open Online Courses (MOOCs) are a resource with scope to meet some of these educational and support needs. MOOCs enable flexible learning, are often free, and can be accessed anywhere in the world. Providing supportive dementia care requires carers to have an understanding of the condition, assistance to cope with the responsibilities of caring, and recognition of the importance of their own health and wellbeing as well as the person they support. In response to the needs of family carers of people with advancing dementia identified through a 5 year programme of research, we developed a MOOC-dementia care: living well as dementia progresses. This is an accessible source of relevant and engaging information; which enables carers to learn about advancing dementia, consider their own needs and create an interactive global forum of peer support. 

Access source material through DOI

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

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

Access source material through DOI

A nurse-led health coaching intervention for stroke survivors and their family caregivers in hospital to home transition care in Chongqing, China: a study protocol for a randomized controlled trial

Background Hospital to home transition care is a most stressful period for stroke survivors and their caregivers to learn self-management of stroke-related health conditions and to engage in rehabilitation. Health coaching has been identified as a strategy to enhance self-management of poststroke care at home. However, interventions in this field that are informed by a health coaching framework are scarce. This study will address a gap in research by testing the hypothesis that a nurse-led health coaching intervention can improve health outcomes for stroke survivors and their family caregivers in hospital to home transition care. Methods This is a single-blind, two-arm parallel randomized controlled trial of a nurse-led health coaching program versus routine care situated in two tertiary hospitals in Chongqing, China. Stroke survivors and their primary family caregivers will be recruited together as "participant dyads", and the estimated sample size is 140 (70 in each group). The intervention includes a 12-week nurse-led health coaching program in hospital to home transition care commencing at discharge from the hospital. The primary outcome is changes in self-efficacy of stroke survivors at 12 weeks from the baseline. The secondary outcomes are changes in stroke survivors' and quality of life, functional ability, stroke-related knowledge, the number of adverse events, and unplanned hospital admissions, and caregivers' self-efficacy and caregiver-related burden at 12 weeks from the baseline. The outcomes will be measured at 12 weeks and 24 weeks from the baseline. Discussion This study will examine the effect of nurse-led health coaching on hospital to home transition care for stroke survivors and their caregivers. It is anticipated that findings from this trial will provide research evidence to inform policy, and resource and practice development to improve hospital to home transition care for stroke survivors and their caregivers.

Access source material through DOI

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

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

Access source material through DOI

Aggression Prevention Training for Individuals With Dementia and Their Caregivers: A Randomized Controlled Trial

Objective: International appeals call for interventions to prevent aggression and other behavioral problems in individuals with dementia (IWD). Aggression Prevention Training (APT), based on intervening in three contributors to development of aggression (IWD pain, IWD depression, and caregiver–IWD relationship problems) aims to reduce incidence of aggression in IWD over 1 year. Design: Randomized, controlled trial. Setting: Three clinics that assess, diagnose, and treat dementia. Participants: Two hundred twenty-eight caregiver–IWD dyads who screened positive for IWD pain, IWD depression, or caregiver–IWD relationship problems randomized to APT or Enhanced Usual Primary Care (EU-PC). Intervention: APT, a skills-based intervention delivered over 3 months to address pain/depression/caregiver–IWD relationship issues. EU-PC included printed material on dementia and community resources; and eight brief, weekly support calls. Measurements: The primary outcome was incidence of aggression over 1 year, determined by the Cohen Mansfield Agitation Inventory-Aggression Subscale. Secondary outcomes included pain, depression, caregiver–IWD relationship, caregiver burden, positive caregiving, behavior problems, and anxiety. Results: Aggression incidence and secondary outcomes did not differ between groups. However, in those screening positive for IWD depression or caregiver–IWD relationship problems, those receiving EU-PC had significant increases in depression and significant decreases in quality of the caregiver–IWD relationship, whereas those receiving APT showed no changes in these outcomes over time. Conclusion: The cost to patients, family, and society of behavioral problems in IWD, along with modest efficacy of most pharmacologic and nonpharmacologic interventions, calls for more study of novel preventive approaches. 

Access source material through DOI

Effects of a dementia dietary educational program on nutritional knowledge and healthy eating behavior of family caregivers

Family caregivers play a critical role in dietary care and the nutritional status of people with dementia. The aim of this study was to investigate the effects of a family care-based dementia dietary educational program (DDEP) on family caregivers’ nutritional knowledge, healthy eating behavior and nutritional status of people with dementia. A total of 57 pairs of participants completed this longitudinal experimental study. Group A received routine care. Group B received the DDEP. Three outcomes were measured at pretest (T1), posttest (T2) and follow-up test (T3). Generalized estimating equations and regression were used to analyze the data. The scores of the caregivers’ nutritional knowledge significantly increased after receiving the DDEP in group B, and this increase was better than in group A. The posttest and follow-up test scores of healthy eating behavior were significantly higher than the pretest scores in both groups. The scores of nutritional status in group B increased from the pretest to the follow-up test, although there was no significant difference between the two groups. Some demographic factors played significant roles in the caregivers’ nutritional knowledge and healthy eating behavior. In sum, the DDEP improved the caregivers’ nutritional knowledge and healthy eating behavior for dementia. The demographic factors of family caregivers should be considered when providing nutritional information to enhance the nutritional status of people with dementia. The DHPDEP should be incorporated into the in-service education and training courses for nurses or dietitians who work with people with dementia. 

Access source material through DOI

Effectiveness of a psychoeducational intervention for caregivers of People With Dementia with regard to burden, anxiety and depression: A systematic review

Aim To assess the effectiveness of psychoeducational interventions with respect to burden, anxiety and depression in family caregivers of People With Dementia living at home. Background In dementia, the family assumes the role of main caregiver, maintaining the patient in a good state of health. Nevertheless, burden, anxiety and depression may have negative repercussions in caregivers. Therefore, professional supports through psychoeducational programmes are recommended as interventions for improving caregivers' health. Design A quantitative systematic review. Data Sources Electronic searches were performed in CINAHL/AMED/CENTRAL/Web of Science/LILACS/PUBMED from January 2005–August 2018. Review Methods The review was conducted using the JADAD scale to assess bias risk and the quality of the randomized controlled trials (RCTs) and the CONSORT instrument to assess study quality report. The extracted data were reviewed by independent reviewer pairs. The review was reported using PRISMA. Results A total of 18 RCTs met inclusion criteria. Seven were classified as Technology‐based Interventions and 11 as Group‐based Interventions. Conclusion Psychoeducational interventions for caregivers allow them to increase their knowledge of the illness, develop problem‐solving skills and facilitate social support. Technology‐based Interventions significantly affect burden while Group‐based Interventions affect anxiety, depression, insomnia and burden and quality of life and self‐efficacy. Impact Research findings can be used to classify caregivers in future interventions according to illness stage to obtain more precise results.

Access source material through DOI

Outcomes and change processes of an established family education program for carers of adults diagnosed with a serious mental health condition

Background Family education programs (FEPs) target caregiving-related psychological distress for carers of relatives/friends diagnosed with serious mental health conditions. While FEPs are efficacious in reducing distress, the mechanisms are not fully known. Peer group support and greater mental health knowledge are proposed to reduce carers' psychological distress by reducing stigmatising attitudes and self-blame, and strengthening carers' relationship with their relative. Methods Adult carers (n = 1016) who participated in Wellways Australia's FEP from 2009 to 2016 completed self-report questionnaires at the core program's start and end, during the consolidation period, and at a 6-month follow-up. Those who enrolled early completed questionnaires prior to a wait-list period. We used linear mixed-effects modelling to assess the program's effectiveness using a naturalistic wait-list control longitudinal design, and multivariate latent growth modelling to test a theory-based process change model. Results While there was no significant change over the wait-list period, psychological distress, self-blame and stigmatising attitudes significantly decreased, and communication and relationship quality/feelings increased from the core program's start to its end. Changes were maintained throughout the consolidation period and follow-up. Peer group support significantly predicted the declining trajectory of distress. Peer group support and greater knowledge significantly predicted declining levels of self-blame and stigmatising attitudes, and increasing levels of communication. Conclusions This is the first study to quantitatively validate the mechanisms underlying the effect of FEPs on carers' psychological distress. Peer group support is key in modifying carers' appraisals of their friend/relatives' condition. Continued implementation of FEPs within mental health service systems is warranted. 

Access source material through DOI

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

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

Access source material through DOI

Decreasing Heart Failure Readmissions Among Older Patients With Cognitive Impairment by Engaging Caregivers

BACKGROUND: Cognitive impairment is common in older patients with heart failure (HF), leading to higher 30-day readmission rates than those without cognitive impairment. OBJECTIVES: The aim of this study was to determine whether increased readmissions in older adults with cognitive impairment are related to HF severity and whether readmissions can be modified by caregiver inclusion in nursing discharge education. METHODS: This study used prospective quality improvement program of cognitive testing and inclusion of caregivers in discharge education with chart review. Two hundred thirty-two patients older than 70 years admitted with HF were screened for cognitive impairment using the Mini-Cog; if score was less than 4, nurses were asked to include caregivers in education on 2 cardiovascular units with an enhanced discharge program. Individuals with ventricular assist device, transplant, or hospice were excluded. Measurements include Mini-Cog score, 30-day readmissions, readmission risk score, ejection fraction, brain natriuretic peptide, and medical comorbidities. RESULTS: Readmission Risk Scores for HF did not correlate with Mini-Cog scores, but admission brain natriuretic peptide levels were less abnormal in those with better Mini-Cog scores. Only for patients with cognitive impairment, involving caregivers in discharge teaching given by registered and advanced practice nurses was associated with decreased 30-day readmissions from 35% to 16% (P = .01). Readmission rates without/with cognitive impairment were 14.1% and 23.8%, respectively (P = .09). Abnormal Mini-Cog screen was associated with a significantly increased risk of 30-day readmission (odds ratio, 2.23; 95% confidence interval, 1.06-4.68; P = .03), whereas nurse documentation of education with family was associated with a significantly decreased risk of 30-day readmission (odds ratio, 0.46; 95% confidence interval, 0.24-0.90; P = .02). CONCLUSIONS: Involving caregivers in discharge education significantly reduced 30-day readmission rates for patients with HF and cognitive impairment. The Readmission Risk Score was similar between patients older than 70 years with and without cognitive impairment. We have hypothesis-generating evidence that identification of cognitive impairment and targeted caregiver engagement by nurses may be critical in the reduction of readmission rates for older patients with HF.

Access source material through DOI

The effects of the family-centered empowerment model on self-efficacy and self-esteem among the family caregivers of patients with prosthetic heart valve: A controlled clinical trial

Background: Patients with heart valve disease need to receive long-term care from their family members after surgical valve replacement. Thus, family caregivers should have adequate self-efficacy for patient care. Objectives: This study examined the effects of the family-centered empowerment model (FCEM) on self-efficacy and self-esteem among the family caregivers of patients with prosthetic heart valve. Methods: In this quasi-experimental study, forty patients together with one of their family caregivers were consecutively recruited and allocated to an intervention or a control group. The FCEM was used in three to five sessions for patients in the intervention group. Besides, we sent their family caregivers educational cards containing the same educations provided to their patients. Finally, an educational session was held for family caregivers in which their questions were answered and each of them was provided with an educational booklet containing the same materials as the educational cards. Patients and their family members in the control group received routine care. Self-efficacy and self-esteem of family caregivers were assessed before, 1 week, and 1.5 months after the intervention. Data analysis was performed through the independent-samples t-test and the repeated measures analysis of variance. Results: Before the intervention, the mean scores of self-efficacy in the control and the intervention groups were 26.68 ± 4.79 and 26.79 ± 5.49, whereas the mean scores of self-esteem in these groups were 33.74 ± 4.55 and 33.84 ± 4.72, respectively. None of the between-group differences were significant. After the intervention, the mean scores of self-efficacy and self-esteem in the intervention group were significantly greater than the control group (37.32 ± 2.68 versus. 29.89 ± 2.20 and 36.26 ± 3.66 versus. 29.26 ± 5.84; P < 0.05). Conclusion: The use of the FCEM promotes self-efficacy and self-esteem among the family caregivers of patients with prosthetic heart valve. 

Access source material through DOI

Caring safely at home

This video-based resource is designed to help people look after someone safely at home.

This resource will help you care for people in any situation, although this resource may be particularly useful if you are supporting someone during the COVID-19 crisis.

Each section has a set of videos designed to give you and the person you care for practical and relevant information to support you day to day.

What will the videos cover?

  • how to help manage certain conditions
  • providing everyday support for any person you’re caring for.

There is no set order you need to go through these topics, and some may not apply to your specific situation. Learn at your own pace and choose whichever is relevant to you.

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

Reablement

Resources for home care providers, GPs, commissioners and families on how to deliver reablement services that promote independence. Includes 'updated guidance for carers and families'.

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

Cygnus: a psychoeducational group for carers of people with a personality disorder

National Institute for Health and Care Excellence guidance suggests that carers of individuals with a diagnosis of borderline personality disorder experience high levels of psychological distress, yet few services in the UK offer specific support to this group of carers. This article will describe the development of a psychoeducational carers' group based on schema theory (Young et al, 2003), including the development of the role of carer experts-by-experience as group co-facilitators. Initial outcome data from the pilot suggest that carers are highly satisfied with the group and that it improves their knowledge, understanding and personal well-being.

Access source material through DOI

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

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

Access source material through DOI

Toward Engaging Caregivers: Inclusion in Care and Receipt of Information and Training among Caregivers for Cancer Patients Who Have Been Hospitalized

Practice recommendations and policies (e.g., CARE Act) emphasize identifying and training a family caregiver during a patient's hospitalization, but engagement of caregivers is not standard in the USA. To inform caregiver engagement, we highlight (1) the frequency of cancer patient hospitalizations as well as (2) the caregiving characteristics and perceptions of inclusion in care and receipt of training among caregivers for patients who had been hospitalized. To further highlight this group of cancer caregivers, we compare to (1) cancer caregivers for patients who had not been hospitalized; (2) caregivers for patients with a primary condition other than cancer who had been hospitalized; and (3) caregivers for patients with a primary condition other than cancer who had not been hospitalized This secondary analysis is drawn from the National Alliance for Caregiving's (NAC)/AARP Caregiving in the US dataset of unpaid adult (i.e., age 18 and older) caregivers. A higher percentage of the cancer caregivers compared to non-cancer caregivers reported multiple hospitalizations for their care recipient over the previous year. Many cancer caregivers for patients who had been hospitalized reported high objective burden (68%) and that caregiving was highly stressful (49%). A majority of these caregivers (60%) indicated that a healthcare provider had asked them what they needed to assist the patient, while fewer (34%) were asked about their needs to take care of themselves, which, though low, was significantly higher compared to caregivers of patients with a primary condition other than cancer that had been hospitalized. The most frequently endorsed training method for the cancer caregivers of patients who had been hospitalized was "being shown how to do a skill by a qualified person" (67%) followed by "performing a skill while a qualified person watches" (57%). Findings suggest that the oncology context might be more advanced in terms of engaging and supporting caregivers, but that improvement is still needed. Furthermore, these findings identify preferred training methods among those who have been in the hospital context as a caregiver.

Access source material through DOI

A systematic review of online interventions for families of patients with severe mental disorders

Background: Several studies show the effectiveness of face-to-face interventions with families in improving the prognosis of patients with severe psychiatric disorders and their relatives; however, the effectiveness of online interventions is poorly understood. The current study aims to provide an overview of evidence for the effectiveness of online treatments (web/app) for patients with severe psychiatric disorders and their families.; Method: We performed a systematic review of online treatments for informal family caregivers of patients with a severe psychiatric disorder. The study psychological interventions had to have been administered in an exclusively online format (app, internet) and aimed at families of patients with severe mental disorder (at least one of first episode psychosis, schizophrenia, schizoaffective, bipolar disorder, and psychotic disorder).; Results: Of a total of 1331 articles, we identified 9 viable studies; 4 randomized clinical trials, and 5 nonrandomized clinical studies. The present study is the first systematic review in this area. Online interventions were well accepted, with good adherence and satisfaction among the caregivers and patients and improved the symptoms of both caregivers and patients.; Limitations: Clinical and methodological diversity of the studies.; Conclusions: Burden improved, and perceived stress decreased in families. Moreover, the severity of positive symptoms decreased and fewer hospitalizations were recorded in patients than in the control group. Therefore, online interventions are a promising therapeutic approach for patients with severe mental disorder and their families. However, more studies-particularly randomized clinical trials-are needed in this area.

Access source material through DOI

Stress-related vulnerability and usefulness of healthcare education in Parkinson's disease: The perception of a group of family caregivers, a cross-sectional study

Parkinson's Disease is associated with a high assistive complexity, thus generating in caregivers a burden proportional to the intensity of the care provided. This study aims to evaluate whether the stress-related level of caregivers is related to their perception of the need for healthcare education. A cross-sectional study was conducted on 69 family caregivers that completed the Stress-related Vulnerability Scale (SVS scale) with a tool of proposed interventions stratified according to caregivers' need as “nothing”, “somewhat”, “moderately” and “extremely”. A direct association between the SVS scale and the perception of the usefulness of interventions was detected, and significant differences were observed for “Caregivers tele-support group” and “Peer-led support group” interventions, thus suggesting an important role for caregivers' emotional status in considering of training courses. Caregivers are split between low vulnerability, with minimal perception of training need, and high burden state with the acute necessity of support to manage patients.

Access source material through DOI

Raising the curtain on stigma associated with dementia: fostering a new cultural imaginary for a more inclusive society

Persons living with dementia and their carers experience stigma. Stigma intensifies social exclusion and threatens health and well-being. Decreasing stigma associated with dementia is a public health priority across national and international settings and is a key component of National Dementia Strategies. Research-based drama is an effective public health strategy for reducing stigma and enhancing well-being. In this article we focus on survey data from an evaluation of a research-based drama called Cracked: new light on dementia. Our analysis illustrates the effectiveness of Cracked in reducing stigma by: decreasing health care practitioners' and family carers' prejudice, fostering critical reflection about relational practices, and fostering a commitment to individual and collective action to address stigma. Cracked is well-positioned to respond to urgent calls for culture change, which include reducing societal misconceptions and stereotypes around dementia and promoting inclusive and meaningful engagement of persons living with dementia across all levels of society.

Access source material through DOI

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

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

Access source material through DOI

Namaste care in the home setting: developing initial realist explanatory theories and uncovering unintended outcomes

Introduction: The End-of-Life Namaste Care Program for People with Dementia, challenges the misconception that people with dementia are a 'shell'; it provides a holistic approach using the five senses, which can provide positive ways of communicating and emotional responses. It is proposed Namaste Care can improve communication and the relationships families and friends have with the person with dementia. Previously used in care homes, this study is the first to explore the pioneering use of Namaste Care in people's own homes.; Objective: To develop initial programme theories detailing if, how and under which circumstances Namaste Care works when implemented at home.; Design: A qualitative realist approach following the RAMESES II guidelines was employed to understand not only whether Namaste Care has positive outcomes, but also how these are generated, for whom they happen and in which circumstances.; Setting: A hospice in the North East of England, operating in the community, through volunteers.; Participants: Programme theories were developed from three focus groups with volunteers implementing Namaste Care (n=8; n=8; n=11) and eight interviews with family carers (n=8).; Results: Four refined explanatory theories are presented: increasing engagement, respite for family carers, importance of matched volunteers and increasing social interaction. It was identified that while Namaste Care achieved some of the same goals in the home setting as it does in the care home setting, it could also function in a different way that promoted socialisation.; Conclusions: Namaste Care provides holistic and personalised care to people with both moderate and advanced dementia, improving engagement and reducing social isolation. In the present study carers often chose to use Namaste Care sessions as respite. This was often linked to their frustration of the unavoidable dominance of task-focussed care in daily life. Individualised Namaste Care activities thus led to positive outcomes for both those with dementia and their carers.

Access source material through DOI

Multiple family group intervention for spinal cord injury: Quantitative and qualitative comparison with standard education

Objective: To evaluate a Multiple Family Group (MFG) education and support intervention for individuals with Spinal Cord Injury (SCI) and their primary caregivers. We hypothesized that MFG would be superior to an Education Control Group (EC) for improving patient activation and coping skills, social supports, and relationship functioning. Setting: A large free-standing inpatient and outpatient rehabilitation facility. Participants: Community dwelling adults with SCI and their caregivers living in the Northwest United States. Interventions/Methods: Nineteen individuals with SCI who had been discharged from inpatient rehabilitation within the previous three years, and their primary caregivers participated. Patient/caregiver pairs were randomized to the MFG intervention or an active SCI EC condition in a two-armed clinical trial design. Participants were assessed pre- and post-program and 6 months post-program. Qualitative and quantitative outcomes were evaluated. Focus groups were conducted with each group to determine benefits and recommendations for improvement. Results: Relative to EC, MFG reduced passive coping and increased subjective and overall social support in participants with SCI. Relative to EC, MFG also reduced passive coping in caregivers. Patient activation relative to EC was non-significantly increased. Content analysis identified four themes describing participants' experiences: enhanced sense of belonging, increased opportunities for engagement, knowledge, and team work; results that were generally congruent with quantitative measures of improved social support. Conclusions: Relative to EC, MFG assisted participants with SCI and their caregivers to manage the difficult, long-term, life adjustments by improving coping and strengthening social support.Trial registration: ClinicalTrials.gov NCT02161913. Registered 10 June 2014.

Access source material through DOI

'Living Together With Dementia': preliminary results of a training programme for family caregivers

The aim of this article was to present the preliminary results of a training programme for family caregivers of people with dementia at an early to moderate stage living at home - 'Living Together With Dementia'. In this randomised controlled trial, 27 family caregivers who met the inclusion criteria were recruited from the neurology outpatient consultation clinic of a hospital in the north of Portugal and randomised into two groups (control and experimental) between October 2015 and March 2016. The programme 'Living Together With Dementia' was applied to the participants of the experimental group. The strategies used, overload, difficulties and satisfaction of the caregivers were assessed at three different stages (at the beginning and end of the intervention, as well as at follow-up). For the data analysis, quantitative parametric measures were applied. The Health Ethical Commission of the Hospital Centre approved the study, and its protocol and Helsinki Declaration ethical principles were considered throughout the process. In the final assessment, an improvement in the overload and difficulties was confirmed, as was an increase in the caregivers' satisfaction level and an improvement in coping/problem-solving strategies. In the follow-up stage, the results tended to revert towards those of the initial assessment. The programme 'Living Together With Dementia' appeared to be a major contribution enabling family caregivers of people with dementia, although there is a need to develop an efficacy study using a more substantial sample. The programme contributed to a reduction in the overload and difficulties borne by the family caregivers of people with dementia at an early to moderate stage living at home and to increased caregiver satisfaction.

Access source material through DOI

An Intervention to Improve Physical Function and Caregiver Perceptions in Family Caregivers of Persons With Heart Failure

Objective: This randomized controlled trial was conducted to determine whether a 12-week home-based aerobic and resistance exercise program would improve physical function and caregiving perceptions among family caregivers (FCGs) of persons with heart failure. Method: Overall, 127 FCGs were randomized to one of three groups: usual care attention control (UCAC), psychoeducation only (PE), and psychoeducation plus exercise (PE + EX). Physical function measures (6-min walk test, handgrip, and upper and lower strength) and caregiving perceptions (Bakas Caregiving Outcomes Scale) were obtained at baseline and at 6 months. Results: FCGs in the PE + EX showed significant improvement in 6-min walk distance (p = .012), handgrip, and lower extremity strength compared with the PE and UCAC groups. The combined group had the greatest improvement in caregiver perceptions (p < .001). Conclusion: FCGs in the PE + EX group improved the most in physical function and caregiver perception outcomes. Directions for future research are provided.

Access source material through DOI

Increasing self-efficacy and knowledge in carer training: Hispanic versus Caucasian

Aim: Nurses are teachers to their patients and need to know best practices for diverse families living with dementia. Little is known about Hispanic beliefs around dementia knowledge and self-efficacy that may have an impact on the learning situation. Design: A pre-/postresearch design was used in this intervention study with a baseline assessment of dementia knowledge and caregiver self-efficacy and a reassessment at training completion. Methods: Investigation of education training with two caregiver groups caring for persons with dementia: Caucasian and Hispanic. Convenience sample consisted of 567 Caucasians and 104 Hispanic dementia caregivers. Groups received training in their primary language accompanied by a training book (Dealing with Dementia Guide) also in the primary language. Results: Dementia knowledge and caregiver self-efficacy increased in both groups with the Hispanic group demonstrating significantly greater increase in self-efficacy. The Caucasian group had a significantly greater increase in the dementia knowledge compared with the Hispanic group.

Access source material through DOI

Impact of simulation-based learning on family caregivers during the rehabilitation period of individuals with spinal cord injury

Study Design: Mixed-methods study.; Objective: Evaluate the knowledge that family caregivers of individuals with spinal cord injuries acquired through the use of a high-fidelity simulation-based learning (SBL) program.; Setting: The study was comprised of three phases: a previous qualitative research study detecting training needs, one in which clinical simulation scenarios were designed, and a final quasi-experimental phase in which ten caregivers of individuals with spinal cord injuries were trained in their care using simulations at the Toledo National Hospital for Paraplegics (Spain).; Methods: The competences acquired by the family were evaluated before and after the simulation training. A researcher-validated tool for each scenario was utilized for this evaluation.; Results: Four learning scenarios were designed based on the needs identified through the caregiver interviews. Following the training of the caregivers with SBL, an increase in their knowledge and skills was identified. For all the scenarios, the caregivers obtained a higher average score on the post test than on the pre test, and these differences were significant (p < 0.001).; Conclusions: Simulation training is a useful and efficient learning tool for caregivers of individuals with a spinal cord injury.

Access source material through DOI

How Do Military Family Caregivers Who Completed a Supportive Intervention Differ From Those Who Dropped Out?

Background. To create efficacious interventions for military family caregivers (MFCs), it is important to understand the characteristics and predictors of completers and dropouts of newly developed supportive interventions. Aim. The purpose of this study was to examine completion patterns in MFCs enrolled in an educational intervention feasibility study. Method. Baseline data are presented from MFC completers (n = 64) and dropouts (n = 60) of a national feasibility study for an innovative intervention. Measures include depression (Patient Health Questionnaire-2), anxiety (Generalized Anxiety Disorder-7), somatic symptoms (Patient Health Questionnaire-15), quality of life (World Health Organization Quality of Life-Brief), relationship satisfaction (Relationship Assessment Scale), and military care recipient number of injuries. Analysis of variance was used to evaluate differences between completers and dropouts and logistic regression was used to identify predictors of intervention completion. Results. Results indicated that MFCs with greater anxiety, χ2(3) = 10.33, p = .02; depression, χ2(1) = 8.18, p = .004; somatic symptoms, F(1, 106) = 6.26, p = .01; care recipient number of injuries, F(1, 118) = 16.31, p < .001; lower general satisfaction with treatment, F(1, 96) = 4.34, p = .04; and lower satisfaction with accessibility and convenience with treatment, F(1, 89) = 4.18, p = .04, were significantly more likely to complete the intervention. After multivariate analysis, the sole predictor of intervention completion was the number of care recipients' injuries, χ2(6) = 14.89, N = 77, p < .05. Conclusions. Overall, findings indicate that MFCs who were more "at risk" were more likely to complete the intervention. Findings present patterns of intervention completion and provide insight on areas in need of further investigation on intervention development supporting the needs of MFCs.

Access source material through DOI

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

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

Access source material through DOI

Family-centred empowerment program for health literacy and self-efficacy in family caregivers of patients with multiple sclerosis

Background: With the obtained advancement in solving health problems, family caregivers are replaced with the care institutions. The accompanying and supporting patients during the disease treatment is very effective in the Iranian culture.; Aim: This study aims at determining the effect of health intervention based on family-centred empowerment model on health literacy and self-efficacy among caregivers of patients with multiple sclerosis.; Methods: In this quasi-experimental study, 70 family caregivers were randomly assigned to the two control and experimental groups, who were evaluated using demographic TOFHLA health literacy and self-efficacy questionnaires. Then, based on training needs in the experimental group, intervention was conducted based on the family-centred empowerment model during one month. The control group received no intervention, and immediately after training and three months after implementing the program, the health literacy and self-efficacy in both the experimental and control groups were re-evaluated.; Results: Before intervention, mean of health literacy in the experimental group was 57.2 ± 9.15 and 3 months after intervention, it reached 62.45 ± 9.39, (p < 0.001). The self-efficacy score in the experimental group was 17.2 ± 3.48 before intervention and it reached to 19.34 ± 11.3 after intervention, which was also significant(p < 0.001).; Conclusion: interventions based on family-centred empowerment approach can improve the health literacy and self-efficacy of caregivers, assist them to provide specialised and efficient care and lead to improved quality of care in caregiving.

Access source material through DOI

Evaluating the Effect of Family-Centered Intervention Program on Care Burden and Self-Efficacy of Hemodialysis Patient Caregivers Based on Social Cognitive Theory: A Randomized Clinical Trial Study

Background: Caregivers of hemodialysis patients spend a large amount of time providing care to these patients while tolerating fatigue and stress. This study evaluated a family-centered empowerment program on the care burden and self-efficacy of hemodialysis patient caregivers based on social cognitive theory.; Methods: In this randomized clinical trial, 70 family caregivers of hemodialysis patients in Isfahan, Iran, were selected and randomly allocated to intervention and control groups, in 2015-2016. Two questionnaires were used to collect the family caregivers' characteristics, care burden, and self-efficacy, and patients' negative and positive outcomes expectancies. Data were analyzed using SPSS before, immediately after, and 2 months after the intervention.; Results: There was no significant difference in the mean scores of care burden, positive outcomes expectancies, negative outcomes expectancies, and self-efficacy between the two groups before the intervention. However, there were significant differences in the post-test and follow-up data analyses (P<0.05).; Conclusion: Given the degenerative nature of chronic kidney disease, it can be considered as a source of long-term and chronic stress for caregivers. Therefore, by implementing an empowerment program, caregiving behaviors can be improved, positive outcomes expectancies can be increased, and negative outcomes expectancies can be reduced.

Access source material through DOI

Educational intervention for informal caregiver of person with dementia: A systematic review

The role of caregivers is very important in the management of person with dementia, where it is not uncommon for them to experience psychological distress. However, the level of distress can be managed and reduced through strategic educational intervention. A systematic review has been conducted through searching Medline, Science direct, Cochrane library and EMBASE databases to provide a narrative synthesis that elaborate on methods and outcomes of the educational intervention among informal caregiver of person with dementia. From a total of 5125 records, eight studies were selected and included in this review, where the results show that educational intervention can be implemented either as individual or group intervention. Group intervention methods mainly focus on training programs such as workshops and lectures, and also group-based discussions. While for individual intervention, most of the activities were implemented through self-learning using technology or computer-based systems. In conclusion, based on the outcome of the studies, both methods of implementations are found to be useful in reducing psychological distress of the informal caregiver. 

Access source material through DOI

Development of a Communication and Health Literacy Curriculum: Optimizing the Informal Cancer Caregiver Role

Objective: The aim of this study was to develop learning objectives and identify content for a core communication and health literacy curriculum designed to optimize the role of informal cancer caregivers (family or friends).; Methods: A three-step process was conducted: (a) two-round online Delphi method process with experts (n=9) in cancer caregiving to gain consensus on curriculum learning objectives; (b) online survey of oncology providers (n=32) to generate potential content and rate importance of domains; and (c) focus group of cancer caregivers (n=6) to explore caregiving experiences and curriculum content topics.; Results: Overall, 17 learning objectives and 53 topics were identified for a cancer caregiver communication and health literacy curriculum. Feedback from cancer caregivers did not produce any new topics yet confirmed topics generated by experts and providers. The curriculum identified as essential has been organized under the following headings: finding cancer information; assessing and integrating information; working with healthcare providers; getting help; talking with the care recipient; recognizing the care recipient's needs; and planning for caregiver self-care.; Conclusions: This theoretically-grounded study systematically identified seven curriculum topic areas and content unique to caregivers and included input from key stakeholders. The next step is to develop the program for dissemination and to test its impact on caregiver and patient outcomes.

Access source material through DOI

"Descubriendo Soluciones Juntos"-An argument for adapting problem-solving training for Latinx care partners after traumatic brain injury (TBI)

Purpose/objective: This commentary demonstrates the need for culturally adapted interventions to support informal caregivers (care partners) of adults with traumatic brain injuries (TBI), proposes and supports an evidence-based intervention, Problem-Solving Training (PST), uniquely suitable for cultural adaptation for Latinx care partners, and describes several considerations and concrete suggestions for initial cultural adaption of PST for Latinx care partners of adults with TBI.; Results: Caregiving among Latinxs is rooted in cultural values and norms that may facilitate or challenge family coping and adaptation after TBI in the United States. Evidence-based interventions to address emotional distress, health, and caregiver burden are needed for Latinx care partners, but must first be translated and adapted to address language and cultural values. Compared with other cognitive and behavioral evidence-based interventions, PST is ideal for cultural adaptation, as the problem-solving process is driven by, and therefore sensitive and responsive to, care partners and their individual values and situations.; Conclusions/implications: Adapting evidence-based problem-solving interventions like PST ("Descubriendo Soluciones Juntos") to be culturally tailored and culturally sensitive for Spanish-speaking Latinx care partners of adults with TBI could reduce existing health disparities and improve the health, well-being, and quality of life of these care partners.

Access source material through DOI

Clinical effectiveness of the START (STrAtegies for RelaTives) psychological intervention for family carers and the effects on the cost of care for people with dementia: 6-year follow-up of a randomised controlled trial

Background The START (STrAtegies for RelaTives) intervention reduced depressive and anxiety symptoms of family carers of relatives with dementia at home over 2 years and was cost-effective. Aims To assess the clinical effectiveness over 6 years and the impact on costs and care home admission. Method We conducted a randomised, parallel group, superiority trial recruiting from 4 November 2009 to 8 June 2011 with 6-year follow-up (trial registration: ISCTRN 70017938). A total of 260 self-identified family carers of people with dementia were randomised 2:1 to START, an eight-session manual-based coping intervention delivered by supervised psychology graduates, or to treatment as usual (TAU). The primary outcome was affective symptoms (Hospital Anxiety and Depression Scale, total score (HADS-T)). Secondary outcomes included patient and carer service costs and care home admission. Results In total, 222 (85.4%) of 173 carers randomised to START and 87 to TAU were included in the 6-year clinical efficacy analysis. Over 72 months, compared with TAU, the intervention group had improved scores on HADS-T (adjusted mean difference -2.00 points, 95% CI -3.38 to -0.63). Patient-related costs (START versus TAU, respectively: median 5759 pound v. 16 pound 964 in the final year; P = 0.07) and carer-related costs (median 377 pound v. 274 pound in the final year) were not significantly different between groups nor were group differences in time until care home (intensity ratio START:TAU was 0.88, 95% CI 0.58-1.35). Conclusions START is clinically effective and this effect lasts for 6 years without increasing costs. This is the first intervention with such a long-term clinical and possible economic benefit and has potential to make a difference to individual carers. Declarations of interest G.L., Z.W. and C.C. are supported by the UCLH National Institute for Health Research (NIHR) Biomedical Research Centre. G.L. and P.R. were in part supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North Thames at Bart's Health NHS Trust. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. Z.W. reports during the conduct of the study; personal fees from GE Healthcare, grants from GE Healthcare, grants from Lundbeck, other from GE Healthcare, outside the submitted work.

Access source material through DOI

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

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

Access source material through DOI

Stress Management Intervention to Prevent Post-Intensive Care Syndrome-Family in Patients' Spouses

Background: Post-intensive care syndrome-family (PICS-F) refers to acute and chronic psychological effects of critical care on family members of patients in intensive care units (ICUs). Evidence suggests that increased distress during the ICU stay increases risk of PICS-F. Sensation Awareness Focused Training (SĀF-T) is a new, promising stress management intervention, but the feasibility of such training during the ICU stay for family caregivers who are acting as the surrogate decision-maker for patients who are undergoing mechanical ventilation is unknown.; Objectives: To assess feasibility and acceptability of SĀF-T to inform a future larger randomized controlled trial.; Methods: This randomized controlled trial of SĀF-T (n = 5) versus a control (n = 5) group was conducted at a level 1 trauma center. Participants assigned to SĀF-T completed 1 session daily for 3 days. Measures included enrollment rate, data completion rate, acceptability of SĀF-T, and symptoms of PICS-F. Scales used included Perceived Stress, Hospital Anxiety and Depression, Impact of Event, and National Institutes of Health Toolbox Emotion Battery.; Results: Mean age was 58 (SD, 12) years; 70% of participants were female. Predetermined feasibility criteria were met in enrollment rate (67%), outcome measures completion rate (> 90%), and SĀF-T acceptability (100% of doses completed during the ICU stay) without adverse events. Stress scores after SĀF-T were significantly lower than scores before SĀF-T (z = -3.5, P = .01).; Conclusions: SĀF-T intervention during the ICU stay is feasible, acceptable, and may improve family caregivers' post-ICU outcomes. Larger clinical trial to assess the effectiveness of SĀF-T in preventing PICS-F seem warranted.

Access source material through DOI

The Influence of a Home-Based Education Intervention on Family Caregivers' Knowledge and Self-Efficacy for Cancer Pain Management in Adult Patients Within a Resource-Limited Setting

Cancer-related pain is prevalent and has debilitating effects on patients and their family. The effects of cancer pain can be curtailed if the family members caring for the patient receive essential support to enhance their capabilities for cancer pain management. Little has been done to study the available support to family caregivers (FCGs) towards pain management in adult cancer patients (ACPs) living in resource-limited countries where the burden of cancer is on the rise. This study evaluated the influence of an education intervention delivered in the home setting on FCGs' knowledge and self-efficacy (SE) for pain management in ACPs. One-group pre-/post-test design was used in a sample of 54 FCGs who had been caring for ACPs suffering from pain for at least 1 month. Data were collected using the Family Pain Questionnaire and Caregiver Pain Management SE Scale. The FCGs' mean knowledge score post-intervention (26.69 ± 10) was higher than the baseline (45 ± 12.9), and the difference was statistically significant (t = 10.382, p = 0.000, CI = 17.12-25.43). Additionally, the FCGs' mean SE score post-intervention (1003.30 ± 191) was higher than the baseline (648.3 ± 273.4), and the difference was statistically significant (t = - 8.52, p = 0.000, CI = - 438.6-- 271.4). The home-based education intervention significantly and positively influenced the FCGs' knowledge and SE for pain management while at home. Cancer pain management educational interventions delivered at home should be considered as one of the strategies for enhancing cancer care in resource limited settings.

Access source material through DOI

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

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

Access source material through DOI

Family Caregiver Skills Training to Improve Experiences of Care: a Randomized Clinical Trial

Objective: To evaluate the effectiveness of Helping Invested Families Improve Veterans' Experiences Study (HI-FIVES), a skills training program for caregivers of persons with functional or cognitive impairments. Design: A two-arm RCT. Setting: Single Veterans Affairs Medical Center. Participants: Patients and their primary caregivers referred in the past 6 months to home and community-based services or geriatrics clinic. Intervention: All caregivers received usual care. Caregivers in HI-FIVES also received five training calls and four group training sessions. Main Measures: Cumulative patient days at home 12 months post-randomization, defined as days not in an emergency department, inpatient hospital, or post-acute facility. Secondary outcomes included patients' total VA health care costs, caregiver and patient rating of the patient's experience of VA health care, and caregiver depressive symptoms. Results: Of 241 dyads, caregivers' (patients') mean age was 61 (73) years, 54% (53%) Black and 89% (4%) female. HI-FIVES was associated with a not statistically significant 9% increase in the rate of days at home (95% CI 0.72, 1.65; mean difference 1 day over 12 months). No significant differences were observed in health care costs or caregiver depressive symptoms. Model-estimated mean baseline patient experience of VA care (scale of 0-10) was 8.43 (95% CI 8.16, 8.70); the modeled mean difference between HI-FIVES and controls at 3 months was 0.29 (p = .27), 0.31 (p = 0.26) at 6 months, and 0.48 (p = 0.03) at 12 months. For caregivers, it was 8.34 (95% CI 8.10, 8.57); the modeled mean difference at 3 months was 0.28 (p = .18), 0.53 (p < .01) at 6 months, and 0.46 (p = 0.054) at 12 months. Conclusions: HI-FIVES did not increase patients' days at home; it showed sustained improvements in caregivers' and patients' experience of VA care at clinically significant levels, nearly 0.5 points. The training holds promise in increasing an important metric of care quality-reported experience with care. 

Access source material through DOI

E-learning as valuable caregivers' support for people with dementia - A systematic review

Background: Present demographic trends show a considerable rise in elderly populations with aging disorders, such as dementia. The current article focused on the exploitation of e-learning as an informal support for caregivers of people with dementia and considered its benefits and limitations to provide proper and relevant care for this target group of people as well as maintain the quality of life of their caregivers.; Methods: The methodology of this study is based on a literature review of accessible peer-review articles from three recognized databases: Web of Science, Scopus, and PubMed. The findings of the selected studies were compared and evaluated.; Results: The findings showed that e-learning educational programs/courses helped caregivers feel more confident about dementia care, reduced their perceived stress and enhanced their feelings of empathy, understanding and concern.; Conclusions: The findings of this study reveal that the exploitation of e-learning as a support tool, especially for informal caregivers, in the management of dementia may be a promising method, but its implementation requires professional training of informal caregivers in the use of this technology. More evidence-based studies are needed on this topic.

Access source material through DOI

The effects of a dyadic strength-based empowerment program on the health outcomes of people with mild cognitive impairment and their family caregivers: a randomized controlled trial

Purpose: As an intermediate prodromal stage of dementia, mild cognitive impairment (MCI) causes functional, emotional, and social challenges for both of the person with MCI (PwMCI) and their family caregiver. However, major attention has only been placed on the PwMCI's for cognitive training. This study evaluated a more comprehensive intervention, which integrated both strength-based and empowerment approaches, to address their complex needs in a dyadic fashion.; Patients and methods: This randomized controlled trial allocated 103 MCI patient-caregiver dyads to receive a 14-week dyadic strength-based empowerment program (D-StEP-MCI, n=52) or usual care (n=51). The D-StEP-MCI program consisted of group-based session to the PwMCI, home-based dyadic sessions, and telephone follow-up, with the activities supported the care dyads to navigate their own strengths and resources for integration, together with the trained skills, to optimize role and social engagement in everyday life. Dyadic health outcomes in terms of subjective and objective cognitive function, and neuro-psychiatric symptoms of PwMCI, stress in symptom management of their family caregivers, and depression of the dyads were evaluated at baseline, after the D-StEP-MCI and at 3 months thereafter.; Results: By using general estimating equation, the D-StEP-MCI significantly improved the cognitive function, subjective memory, and mood status of the PwMCI, and the positive changes were maintained at the 3-month endpoints. It also has significantly positive effects on caregivers' stress in symptom management and level of depression.; Conclusion: Our findings showed the health benefit of combining strength-based and empowerment approach in supporting the disease adaptation of PwMCI and caregiver in a dyadic fashion. This study also supports the use of a social interaction approach to optimize the everyday engagement of the PwMCI.

Access source material through DOI

Effectiveness of Resilience Education in the Mental Health of Family Caregivers of Elderly Patients with Alzheimer's Disease

Background: Continuing care of an elderly patient with Alzheimer's disease may result in psychosocial and physical disorders in family caregivers, as well as limitations to providing complete care. Objectives: The aim of the present study was to determine the effectiveness of resilience education in the mental health of family caregivers of elderly patients with Alzheimer's disease. Methods: This study followed a randomized, clinical trial design. The study population consisted of family caregivers of elderly patients with Alzheimer's disease who referred to hospitals and neurologists' offices located in the western cities of Mazandaran province, Iran. Data were collected between 2016 and 2017. Fifty-four family caregivers were recruited through convenience sampling and randomized into control and intervention groups (27 in each group). Demographic characteristics, Connor-Davidson Resilience Scale, and General Health Questionnaire were used for data collection. Resilience education was provided in eight sessions (45 min each) using PowerPoint presentations and educational pamphlets. The mental health scores were calculated using the indices including normality tests and analyzed using the independent and paired t-tests, analysis of variance (ANOVA), and Bonferroni test. Results: An independent t-test showed improvements in the mental health status of those who received the educational intervention (mean difference: 23.8±6.4; P < 0.001). The independent t-test also indicated statistically significant differences between the groups' anxiety/insomnia (8.8±2.3 versus -0.12±2.5), somatic symptoms (7.2±2.2 versus -0.9±1.03), social dysfunction (4.5±2.9 versus 0.2±1.3), and depression (3.2±2.2 versus -0.08±0.6; P < 0.001). Conclusions: Resilience education successfully improved the mental health of family caregivers. Therefore, it is suggested that healthcare providers, Alzheimer's associations, andNGOsprovide educational interventions to help promote the caregivers' mental health. 

Access source material through DOI

Effect of a Hospital-Initiated Program Combining Transitional Care and Long-term Self-management Support on Outcomes of Patients Hospitalized With Chronic Obstructive Pulmonary Disease: A Randomized Clinical Trial

Importance: Patients hospitalized for chronic obstructive pulmonary disease (COPD) exacerbations have high rehospitalization rates and reduced quality of life.; Objective: To evaluate whether a hospital-initiated program that combined transition and long-term self-management support for patients hospitalized due to COPD and their family caregivers can improve outcomes.; Design, Setting, and Participants: Single-site randomized clinical trial conducted in Baltimore, Maryland, with 240 participants. Participants were patients hospitalized due to COPD, randomized to intervention or usual care, and followed up for 6 months after hospital discharge. Enrollment occurred from March 2015 to May 2016; follow-up ended in December 2016.; Interventions: The intervention (n = 120) involved a comprehensive 3-month program to help patients and their family caregivers with long-term self-management of COPD. It was delivered by nurses with special training on supporting patients with COPD using standardized tools. Usual care (n = 120) included transition support for 30 days after discharge to ensure adherence to discharge plan and connection to outpatient care.; Main Outcomes and Measures: The primary outcome was number of COPD-related acute care events (hospitalizations and emergency department visits) per participant at 6 months. The co-primary outcome was change in participants' health-related quality of life measured by the St George's Respiratory Questionnaire (SGRQ) at 6 months after discharge (score, 0 [best] to 100 [worst]; 4-point difference is clinically meaningful).; Results: Among 240 patients who were randomized (mean [SD] age, 64.9 [9.8] years; 61.7% women), 203 (85%) completed the study. The mean (SD) baseline SGRQ score was 62.3 (18.8) in the intervention group and 63.6 (17.4) in the usual care group. The mean number of COPD-related acute care events per participant at 6 months was 1.40 (95% CI, 1.01-1.79) in the intervention group vs 0.72 (95% CI, 0.45-0.97) in the usual care group (difference, 0.68 [95% CI, 0.22-1.15]; P = .004). The mean change in participants' SGRQ total score at 6 months was 2.81 in the intervention group and -2.69 in the usual care group (adjusted difference, 5.18 [95% CI, -2.15 to 12.51]; P = .11). During the study period, there were 15 deaths (intervention: 8; usual care: 7) and 339 hospitalizations (intervention: 202; usual care: 137).; Conclusions and Relevance: In a single-site randomized clinical trial of patients hospitalized due to COPD, a 3-month program that combined transition and long-term self-management support resulted in significantly greater COPD-related hospitalizations and emergency department visits, without improvement in quality of life. Further research is needed to determine reasons for this unanticipated finding.; Trial Registration: ClinicalTrials.gov Identifier: NCT02036294.;

Access source material through DOI

Development of a dyadic sleep intervention for Alzheimer's disease patients and their caregivers

Purpose: This study aimed to refine a behavioral sleep intervention program targeting patients with Alzheimer's disease and their caregivers. Methods: In this case series, key components of the sleep program were built upon previous intervention studies of patients with cognitive impairment/dementia. The intervention consisted of five weekly sessions covering sleep hygiene, sleep compression, stimulus control, daily walking/light exposure, relaxation/mindfulness, and caregiver training to manage patients' behavioral problems. The materials and structure were iteratively refined based on feedback from caregivers and sleep educators. Sleep diaries were used to evaluate sleep outcomes. Results: Five out of six enrolled dyads completed the sessions. Several revisions were made during testing: the last session was changed from telephone to in-person; some components (e.g., sleep scheduling, mindfulness) were rearranged within or across sessions; sleep educator guidelines for sleep scheduling, light exposure, and walking were revised. After the fifth dyad, no additional issues were identified by the caregiver or the sleep educator. Four patients and three caregivers had improved sleep at the last session. Conclusions: The iterative refinement process was successful in finalizing the intervention program, with evidence of sleep improvements. Formal pilot testing of the program will provide further information on feasibility and effectiveness. IMPLICATIONS FOR REHABILITATION Our dyadic behavioral sleep program can be tailored to various types of sleep problems among patients with Alzheimer's disease and their family caregivers, with the goal of improving daytime function by reducing sleep disturbances at night. Caregiver training and participation of both members of the dyad in sleep management may benefit the patients' sleep and other health outcomes, reduce caregiver stress and burden, and ultimately delay or prevent institutionalization of Alzheimer's disease patients.

Access source material through DOI

Building on Self-efficacy for Experienced Family Caregivers: The Savvy Advanced Program

Background and Objectives The Savvy Advanced psychoeducation program was designed for previously trained caregivers of persons living with dementia to refine their problem-solving and planning skills and enhance their sense of self-efficacy as dementia progressed for the care recipient. Implementation, feasibility, participant satisfaction, and perceived program benefits were also evaluated. Research Design and Methods A total of 100 dementia family caregivers participated in the 12-month evaluation of Savvy Advanced. A pragmatic quasi-experimental no control design was used to examine changes in caregiver self-efficacy, competence, personal gain, skill mastery, and symptoms of depression from baseline to 5 and 12 months postintervention. Implementation feasibility, and participant satisfaction and perceived program benefits, were also evaluated. Results Having previously participated in a psychoeducation intervention, caregivers were quickly engaged and interactive. Caregivers demonstrated significant improvement in competence, personal gain, self-efficacy, and symptoms of depression at 5 months postprogram. Gains were sustained for competence and personal gain at 12 months. Caregivers were highly satisfied with the program and supporting materials. Challenges to implementation included caregiver recruitment and trainer sustainability. Discussion and Implications Caregivers can benefit from episodic interventions as their situation changes and new challenges arise. Savvy Advanced is one means to address these needs. Evaluation in a randomized trial is required to establish efficacy; examination of alternative modes of delivery for caregivers unable to attend in person is warranted.

Access source material through DOI

330 Insights into Dementia- An Integrated Care Approach to Family Support

Background The increase in the number of people with dementia in the coming years will be significant and could be as high as 132,000 people by 2041. There is a growing need for enhanced post diagnostic supports for patients living with dementia and their families. We identified the need for a localised educational resource for families and supportive others attending our specialist memory service Methods Staff from the Integrated Care Team, Specialist Memory Service and Primary Care were trained by the Alzheimer's Society of Ireland to deliver a 6 week 'Insights Into Dementia' carers course. Tutors and dementia advisors from the Alzheimer's Society of Ireland provided in-depth training prior to course delivery and feedback to the facilitators on a weekly basis. The course included advice and education on Dementia; Changing Relationships, Communication; Responding to changes in behaviour; Nutrition; Engaging in activities; Assisting with personal care and Safety in the home. Families gained advice regarding their self-care needs and learned how to access information and support.  All services involved worked together to identify, refer and support families with dementia in the local area. The group took place in an accessible location at a time which accommodated families to attend. Each course attendee completed a questionnaire prior to and after commencing the group. Results The group has delivered education and support to 48 families to date. Feedback from participants was very positive with self-reported increase in confidence, knowledge and awareness about dementia. Waiting time to access support has significantly decreased. Every course has led to a support group who meet up on a regular basis in their community. Conclusion This novel collaboration has become a key part of the integrated care pathway we have developed to support people living with dementia and their supportive others in our catchment area. The Integrated Care approach has served to enrich the programme and allow for timely signposting to localised supports. 

Access source material through DOI

Caregiver outcomes of the REACH-HF multicentre randomized controlled trial of home-based rehabilitation for heart failure with reduced ejection fraction

Background: Caregivers frequently provide support to people living with long-term conditions. However, there is paucity of evidence of interventions that support caregivers in their role. Rehabilitation EnAblement in Chronic Heart Failure (REACH-HF) is a novel home-based, health-professional-facilitated, self-management programme for patients with heart failure (HF) and their caregivers. Methods: Based on the random allocation of individual adult patients with reduced ejection fraction (HFrEF) and left ventricular ejection fraction <45% within the past five years, the caregiver of patients was allocated to receive the REACH-HF intervention over 12 weeks (REACH-HF group) or not (control group). Caregiver outcomes were generic health-related quality of life (EQ-5D-5L), Family Caregiver Quality of Life Scale questionnaire (FamQol), Caregiver Burden Questionnaire HF (CBQ-HF), Caregiver Contribution to Self-care of HF Index questionnaire (CC-SCHFI) and Hospital Anxiety and Depression Scale (HADS). Outcomes were compared between groups at 4, 6 and 12 months follow-up. Twenty caregivers receiving REACH-HF were purposively selected for qualitative interviews at 4 and 12 months. Results: Compared with controls (44 caregivers), the REACH-HF group (53 caregivers) had a higher mean CC-SCHFI confidence score at 12 months (57.5 vs 62.8, adjusted mean difference: 9.3, 95% confidence interval: 1.8–16.8, p = 0.016). No significant between group differences were seen in other caregiver outcomes. Qualitative interviews showed that most caregivers who received the REACH-HF intervention made positive changes to how they supported the HF patient they were caring for, and perceived that they had increased their confidence in the caregiver role over time. Conclusion: Provision of the REACH-HF intervention for caregivers of HF patients improved their confidence of self-management and was perceived for some to be helpful in supporting their caregiver role.

Access source material through DOI

Patient Education: A Comparison of Teaching Strategies for Patients With Brain Neoplasms

Background: A diagnosis of cancer, specifically a brain neoplasm, can be daunting and confusing to patients and their family members. It is important to find ways to provide education about diagnosis, symptoms, medications, treatment, and side effects in a usable and retrievable format. Objectives: The aim of this study was to examine the impact of the following three teaching strategies on patients’ knowledge and understanding of their diagnosis: standard of care (SOC), which includes a generic folder of information (strategy 1); tailored paper binder (strategy 2); or SOC plus Technology Enhanced Active Learning (TEAL) (strategy 3). Methods: This was a prospective pre-/post-test pilot study including patients who had been diagnosed with brain neoplasms. Findings: Among 30 patients enrolled during a seven-month period, those who received strategy 3 had higher mean post-test knowledge scores compared to those who received strategy 1 or 2, but the difference was not statistically significant. The results suggest that TEAL-reinforced education is helpful for keeping appointments and may be associated with better knowledge retention regarding disease process and medications. In addition, fewer calls were made to the healthcare team in the strategy 3 group compared to the strategy 1 and 2 groups.

Access source material through DOI

The Capacity of Learning in the Quality of Life of the Informal Caregiver

Introduction The presence in the home of a dependent family member is a problematic situation for the whole family. By implementing training programs it is possible to achieve health gains and improve care management, as well as increase the capacity to seek information and take responsibility. Objectives To synthesize the effects of training programs of the informal caregiver in a home context in their quality of life. Methods Integrative review of the literature carried out during the month of March 2019, in the databases: Scielo, Mediclatina, Scopus, Cinahl and Medline, through the PICO methodology, whose guiding question was: “What are the effects caused on the quality of life by... [The remainder of the abstract is not freely accessible]

Access source material through DOI

Adaptation and Implementation of a Family Caregiver Skills Training Program: From Single Site RCT to Multisite Pragmatic Intervention

Purpose We describe an approach to rapidly adapt and implement an education and skills improvement intervention to address the needs of family caregivers of functionally impaired veterans-Helping Invested Families Improve Veterans' Experience Study (HI-FIVES). Design Prior to implementation in eight sites, a multidisciplinary study team made systematic adaptations to the curriculum content and delivery process using input from the original randomized controlled trial (RCT); a stakeholder advisory board comprised of national experts in caregiver education, nursing, and implementation; and a veteran/caregiver engagement panel. To address site-specific implementation barriers in diverse settings, we applied the Replicating Effective Programs implementation framework. Findings Adaptations to HI-FIVES content and delivery included identifying core/noncore curriculum components, reducing instruction time, and simplifying caregiver recruitment for clinical settings. To enhance curriculum flexibility and potential uptake, site personnel were able to choose which staff would deliver the intervention and whether to offer class sessions in person or remotely. Curriculum materials were standardized and packaged to reduce the time required for implementation and to promote fidelity to the intervention. Conclusions The emphasis on flexible intervention delivery and standardized materials has been identified as strengths of the adaptation process. Two key challenges have been identifying feasible impact measures and reaching eligible caregivers for intervention recruitment. Clinical Relevance This systematic implementation process can be used to rapidly adapt an intervention to diverse clinical sites and contexts. Nursing professionals play a significant role in educating and supporting caregivers and care recipients and can take a leading role to implement interventions that address skills and unmet needs for caregivers.

Access source material through DOI

Older Adult Factors Associated With Identified Need for Family Caregiver Assistance During Home Health Care

Family caregivers make important contributions to home health care for older adults, but knowledge of the specific roles they assume is lacking. We analyzed data from 1,758 community-dwelling Medicare beneficiaries aged 65+ receiving Medicare-funded home health care between 2011 and 2016, using linked National Health and Aging Trends Study and Outcomes and Assessment Information Set data. Most (86.7%) beneficiaries receiving home health care had an identified need for family caregiver assistance, and nearly 6 in 10 (57.9%) had identified need for caregiver assistance with five or more tasks. After examining significant associations between older adult characteristics and identified needs for caregiver assistance with specific tasks, we identified three profiles of older adults who demonstrate similar patterns of identified need for family caregiver assistance during home health. These profiles include: (1) older adults with greater functional impairment who more often had identified need for assistance with Instrumental Activities of Daily Living, advocacy, or Activities of Daily Living; (2) older adults with cognitive impairment who more often had identified need for assistance with medication administration or supervision; and (3) older adults with greater clinical severity who more often had identified need for assistance with medical procedures and equipment. Findings support calls to develop training interventions and strengthen the partnership between home health providers and family caregivers. These three profiles present a potential framework for the development of family caregiver training programs.

Access source material through DOI

HOMESIDE: Home-based family caregiver-delivered music and reading interventions for people living with dementia: Protocol of a randomised controlled trial

Introduction Pharmacological interventions to address behavioural and psychological symptoms of dementia (BPSD) can have undesirable side effects, therefore non-pharmacological approaches to managing symptoms may be preferable. Past studies show that music therapy can reduce BPSD, and other studies have explored how formal caregivers use music in their caring roles. However, no randomised study has examined the effects on BPSD of music interventions delivered by informal caregivers (CGs) in the home setting. Our project aims to address the need for improved informal care by training cohabiting family CGs to implement music interventions that target BPSD, and the quality of life (QoL) and well-being of people with dementia (PwD) and CGs. Methods and analysis A large international three-arm parallel-group randomised controlled trial will recruit a sample of 495 dyads from Australia, Germany, UK, Poland and Norway. Dyads will be randomised equally to standard care (SC), a home-based music programme plus SC, or a home-based reading programme plus SC for 12 weeks. The primary outcome is BPSD of PwD (measured using the Neuropsychiatric Inventory-Questionnaire). Secondary outcomes will examine relationship quality between CG and PwD, depression, resilience, competence, QoL for CG and QoL for PwD. Outcomes will be collected at baseline, at the end of the 12-week intervention and at 6 months post randomisation. Resource Utilisation in Dementia will be used to collect economic data across the life of the intervention and at 6-month follow-up. We hypothesise that the music programme plus SC will generate better results than SC alone (primary comparison) and the reading programme plus SC (secondary comparison). Ethics and dissemination Ethical approval has been obtained for all countries. Results will be presented at national and international conferences and published in scientific journals and disseminated to consumer and caregiver representatives and the community. Trial registration numbers ACTRN12618001799246p; NCT03907748 

Access source material through DOI

The Support, Health, Activities, Resources, and Education program for early stage dementia: Results from a randomized controlled trial

Purpose: A randomized controlled trial was conducted to test the effectiveness of the Support, Health, Activities, Resources, and Education Program. This six-session psycho-educational program provides dyadic counseling for individuals in the early stages of dementia and their family caregivers. The goal is to prevent common problems in care that emerge during the course of dementia by (1) actively engaging the person with dementia in developing a balanced plan of future care with his/her caregiver, (2) increasing use of available services, (3) enhancing dyadic relationship functioning, (4) improving well-being, and (5) evoking satisfaction with components of the intervention. Design and methods: Persons with early stage dementia (n = 128) and their caregivers (n = 128) were randomly assigned either to Support, Health, Activities, Resources, and Education Program or a control condition. Intervention efficacy was evaluated for completion of a care plan, use of services, dyadic relationship functioning, participant well-being, and program satisfaction. Results: Dyads in the treatment condition were able to construct a balanced care plan and increased their use of services. Dyadic functioning improved for one dimension (decreased emotional disruptions). Compared to the control condition, satisfaction with the intervention was higher for caregivers enrolled in Support, Health, Activities, Resources, and Education Program on four of five dimensions and one dimension for persons with dementia. Implications: Support, Health, Activities, Resources, and Education Program is a promising prevention approach that takes advantage of the early stage of dementia when both members of the dyad can participate fully in making decisions about later care. 

Access source material through DOI

Vietnamese American Dementia Caregivers' Perceptions and Experiences of a Culturally Tailored, Evidence-Based Program to Reduce Stress and Depression

Vietnamese American dementia caregivers are at increased risk for adverse mental health compared to the general U.S. population given their sociodemographic and immigration experiences, yet programs that address their needs are lacking. The current article describes Vietnamese American dementia caregivers' perceptions and experiences of a culturally tailored, evidence-based intervention to reduce stress and depression. A convenience sample of caregivers was recruited from the San Francisco Bay area and randomly assigned to intervention (“Our Family Journey”; OFJ) (n = 30) or control (written dementia caregiving information) (n = 30) groups. All intervention and 76.7% of control caregivers reported that the OFJ or educational materials, respectively, were very/somewhat helpful. Three or more skills were refined/learned by 96.7% of OFJ and 36.6% of control participants. Qualitative findings indicated that the intervention had positive effects on well-being and taught new caregiving skills. This first U.S. study to address the mental health needs of Vietnamese American dementia caregivers shows positive perceptions/experiences and demonstrates a model to address a significant need in the community. 

Access source material through DOI

Caregiver Interventions for Adults Discharged from the Hospital: Systematic Review and Meta-Analysis

OBJECTIVES: To review the evidence evaluating the effectiveness of informal caregiver interventions to facilitate the recovery of older people discharged from the hospital. DESIGN: Systematic review and meta-analysis. SETTING: Hospital and community. METHODS: Published and unpublished randomized and nonrandomized controlled trials assessing the effectiveness of informal caregiver interventions to support the recovery of older people discharged from the hospital were identified (to March 2019). The primary outcome was patient health-related quality of life (HRQOL). Secondary outcomes included patient function, caregiver burden, caregiver HRQOL, psychological distress, adverse events, and health resource use. Studies were critically appraised and meta-analyzed. PARTICIPANTS: Adults who had been admitted to the hospital. RESULTS: A total of 23 studies were eligible (4695 participants). The indication for hospital admission was stroke in 21 trials (91%). Interventions consisted of training and/or skills-based programs, with or without home visits/telephone follow-up. Caregiver interventions for patients following stroke may provide no benefit for patient HRQOL at 12 months (standardized mean difference =.29; 95% confidence interval = -.12 to.69; low-quality evidence). Caregiver interventions demonstrated benefit for caregiver burden and both patient and caregiver anxiety at 12 months. No consistent effect was found on functional outcomes, depression, HRQOL, adverse events, or health resource use measures. CONCLUSIONS: Informal caregivers who receive training to facilitate the recovery of older people discharged from the hospital following stroke may have a lower burden and reduced anxiety at 12 months compared with those who do not. However, the evidence was moderate to low quality. Further study is warranted to explore whether caregiver interventions can be modified for nonstroke populations such as those with hip fracture. 

Access source material through DOI

The effect of family teaching on depression, anxiety and stress in caregivers of patients received electroconvulsive therapy

Purpose The purpose of this paper is to evaluate the effect of the planned pre-electroconvulsive therapy (ECT) family teaching on depression, anxiety and stress of caregivers of patients with mental disorders receiving ECT. Design/methodology/approach In this quasi-experimental study, 130 participants were randomized allocated into intervention or control groups. The planned family teaching program consisted of four 90 min sessions held during four weeks. Assessments occurred at pre-intervention (one week before the first session), and post-intervention (one months after the four session). Data were collected using demographic questionnaire and Depression, Anxiety and Stress Scale (DASS-21). Mean comparisons were performed using Student’s t-test while effect sizes were estimated by Cohen’s d coefficient. The significance level was considered less than 0.05. Findings The mean scores of the depression, anxiety and stress levels in the intervention group were significantly reduced compared to the control group (p=0.001). Originality/value The family pre-ECT teaching intervention and counseling decreased the depression, anxiety and stress level of family caregivers of patients with mental disorders receiving ECT and the maintenance of other favorable conditions at baseline. These results suggest that even a short-term educational intervention for family members of patients received ECT can improve emotional outcomes of treatment in the family.

Access source material through DOI

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

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

Access source material through DOI

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

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

Access source material through DOI

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

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

Access source material through DOI

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

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

Access source material through DOI

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

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

Access source material through DOI

Building Better Caregivers: A Pragmatic 12-Month Trial of a Community-Based Workshop for Caregivers of Cognitively Impaired Adults

Building Better Caregivers (BBC), a community 6-week, peer-led intervention, targets family caregivers of those with cognitive impairments. BBC was implemented in four geographically scattered areas. Self-report data were collected at baseline, 6 months, and 1 year. Primary outcome were caregiver strain and depression. Secondary outcomes included caregiver burden, stress, fatigue, pain, sleep, self-rated health, exercise, self-efficacy, and caregiver and care partner health care utilization. Paired t tests examined 6 month and 1-year improvements. General linear models examined associations between baseline and 6-month changes in self-efficacy and 12-month primary outcomes. Eighty-three participants (75% of eligible) completed 12-month data. Caregiver strain and depression improved significantly (Effect Sizes =.30 and.41). All secondary outcomes except exercise and caregiver health care utilization improved significantly. Baseline and 6-month improvements in self-efficacy were associated with improvements in caregiver strain and depression. In this pilot pragmatic study, BBC appears to assist caregivers while reducing care partner health care utilization. Self-efficacy appears to moderate these outcomes. 

Access source material through DOI

Effects on stress reduction of a modified mindfulness-based cognitive therapy for family caregivers of those with dementia: Study protocol for a randomized controlled trial

Background: Caring for people with dementia (PWD) is stressful and poses many life challenges for the family caregivers. Interventions targeting the stress and psychological well-being of the caregivers have been proposed but the sustainable effects and efficacies of these interventions vary considerably. Mindfulness-based cognitive therapy (MBCT) has been shown to be effective at reducing stress in several populations. However, limited research on the effects of MBCT in family caregivers of PWD has been conducted. This study protocol aims to examine the effects on stress reduction of a modified MBCT for family caregivers of PWD. Methods: A prospective, single-blind, parallel-group, randomized controlled trial will be adopted. A convenience sample of 100 community-dwelling family caregivers of PWD will be randomized to either the modified MBCT or the control groups. The modified MBCT group will receive a 10-week, seven-session, group-based modified MBCT whereas the control group will receive a social interaction and routine education (SIRE) on dementia care program at a frequency and timing similar to those in the intervention group. The primary outcomes (stress) and secondary outcomes (depression, anxiety, burden, health-related quality of life, and the behavioral and psychological symptoms of the care recipient) will be measured immediately post-intervention (T1) and at 6-month follow-up (T2), which will be compared with the baseline (T0). Discussion: Reducing the stress of caregiving can promote the well-being of the family caregivers and maintain their sustainability in providing daily care for their family members with dementia. MBCT is found to be effective for stress reduction in other populations, and the results of this study are able to provide us with evidence for using MBCT as a standard supportive intervention for the family caregivers of PWD. Trial registration: ClinicalTrials.gov, NCT03354819. Registered on 28 November 2017. 

Access source material through DOI

Effects of a modified mindfulness-based cognitive therapy for family caregivers of people with dementia: A pilot randomized controlled trial

Background: Caregivers of people with dementia experience high stress levels. Mindfulness-based cognitive therapy has been found to be effective in reducing stress and improving the psychological well-being of several populations. Objective: To explore the feasibility and preliminary effects of a modified mindfulness-based cognitive therapy for family caregivers of people with dementia. Methods: In a single-blinded, parallel-group, randomized controlled trial, 36 caregivers of people with dementia were randomized to either the intervention group, receiving the 7-session modified mindfulness-based cognitive therapy in 10 weeks; or the control group, receiving the usual family care and brief education on dementia care. The brief education sessions were similar in frequency and duration to the intervention group. Various psychological outcomes of caregivers were assessed and compared at baseline, immediately post-intervention, and at the 3-month follow-up. A focus group with eight participants from the intervention group was conducted to identify the strengths, limitations, and difficulties of the intervention. Results: Intervention feasibility was established with a high completion rate of 83% (completing ≥5 out of the 7 sessions) and a low attrition rate of 11.1%. The duration of the average weekly home-based mindfulness practice of the caregivers was 180 minutes (S.D. = 283.8). The intervention group experienced a statistically significant decrease in stress levels (Z = -1.98, p = 0.05, Cohen's d = 0.7) and depressive symptoms (Z = -2.25, p = 0.02, Cohen's d = 0.8) at the post-test; and a decrease in stress (Z = -2.58, p = 0.01, Cohen's d = 0.9), depressive symptoms (Z = -2.20, p = 0.03, Cohen's d = 0.7), and burden (Z = - 2.74, p = 0.006, Cohen's d = 1.0), and improved quality of life (physical) (Z = -1.68, p = 0.09, Cohen's d = 0.6) at the 3-month follow-up compared to the controls. A focus group conducted immediately after the intervention revealed three major themes: Impacts on the family caregivers, Impacts on the people with dementia, and Difficulty in practicing mindfulness. Conclusion: The findings support the feasibility and preliminary effects of the modified mindfulness-based cognitive therapy on reducing the stress of caregivers and improving their psychological well-being. Some potential effects on people with dementia (e.g., improvements in behavioral problems) were reported by the caregivers. A future study with a larger and more diverse sample is proposed to evaluate the longer-term effects and generalizability of the modified mindfulness-based cognitive therapy and the impacts on people with dementia. 

Access source material through DOI

An Italian pilot study of a psycho-social intervention to support family caregivers' engagement in taking care of patients with complex care needs: The Engage-in-Caring project

Background: The raising of disability and chronic illness burden among European population is calling for a new paradigm of care, focused on primary health care interventions. Engage-In-Caring is a novel multicomponent intervention clearly dedicated to improve family caregiver engagement in the care of patients with complex care needs, by supporting them to develop a stronger consciousness of their role, needs and skills. Method: Engage-In-Caring intervention's efficacy and feasibility have been evaluated through a single arm pre-post observational pilot study settled in Rome. A qualitative phase, consisting of literature analysis of caregivers' unmet needs and a final revision from an experts' group, led to the structuration of the intervention, following the Caregiver Health Engagement Model (CHE-Model). Afterwards, a quantitative phase allowed understanding the feasibility of the intervention through Kruskal-Wallis test on a sample of 47 caregivers. Results: Results showed a reduction of the physical burden (Chi Squared = 6,483; p =.01) perceived by the caregivers and increase of the health literacy (Chi Squared = 3,560; p =.059) after the intervention. Conclusions: Feasibility tests on caregivers of patients with complex care needs are promising: this pilot study suggests a first effectiveness evidence, particularly concerning aspects related to burden perception and improvements in health literacy. Randomised controlled trials on larger samples are needed.

Access source material through DOI

Efficacy of a psychoeducational intervention in caregivers of people with intellectual disabilities: A randomized controlled trial (EDUCA-IV trial)

Background: People with intellectual disabilities (ID) are usually cared for by their own parents, families or informal caregivers. Caring for a person with ID can have a negative impact on caregivers' mental health (burden, depression, anxiety). The main aim of the EDUCA-IV trial was testing the efficacy of a psychoeducational intervention program (PIP) versus standard practice and to see whether the PIP intervention would reduce the caregiver's burden at post-intervention (4 months) and at follow-up (8 months). Method: This was a multi-centre randomised controlled trial including 194 caregivers (96 randomised to PIP, 98 to control condition). PIP intervention consists of 12 weekly group sessions. The control group received treatment as usual. Primary outcomes measured included the Zarit Burden Interview (ZBI). Secondary outcomes were caregivers' mental health (GHQ-28), anxiety (STAI) and depression (CES-D). Results: The decrease of ZBI scores was not significant at 4 months. There was significant decrease in the GHQ scores at 4 and 8 months. CES-D showed relevant results at follow-up. Intention to treat analyses showed similar results. Conclusions: The PIP intervention seems not to be effective reducing burden, but appears to have a positive result on general mental health. The program was well received and valued by caregivers. 

Access source material through DOI

Predictors of Symptoms Remission Among Family Caregivers of Individuals With Dementia Receiving REACH VA

Resources for Enhancing All Caregivers Health (REACH VA) is a behavioral intervention for caregivers of individuals with dementia disseminated in the VA. Although shown to improve caregiver and care recipient outcomes, some caregivers continue to experience depression or caregiver burden following the intervention. Factors that predict symptom remission following REACH VA are unknown. The present study investigated attachment, social support, and psychopathology as predictors of symptom remission for family caregivers who completed REACH VA. Caregivers who do not remit perceive lower levels of social support from loved ones, endorse poorer attachment quality, and have more personality disorder characteristics, particularly affective instability. These factors that impair caregivers’ abilities to be effectively attuned to the needs of their care recipients and to reap benefits from a brief and focused behavioral intervention such as REACH VA. Interventions that target caregiver interpersonal functioning and emotion regulation skills may be helpful to those who do not respond to REACH VA. 

Access source material through DOI

Comprehensive Family Caregiver Support and Caregiver Well-Being: Preliminary Evidence From a Pre-post-survey Study With a Non-equivalent Control Group

Introduction: In May 2010, the Caregivers and Veterans Omnibus Health Services Act of 2010, was signed into law in the United States, establishing the Program of Comprehensive Assistance for Family Caregivers (PCAFC) provided through the VA Caregiver Support Program (CSP). Prior to this program, over half of family caregivers reported being untrained for the tasks they needed to provide. The training through PCAFC represents the largest effort to train family caregivers in the U.S., and the features of the program, specifically a monthly stipend to caregivers and access to a Caregiver Support Coordinator at each VA medical center nationally, make it the most comprehensive caregiver support program ever enacted in the U.S. Methods: The purpose of this study is to examine the association between PCAFC participation and caregiver well-being following enrollment, comparing participating PCAFC caregivers to caregivers who applied to but were not approved for PCAFC participation (non-participants). Well-being is defined using three diverse but related outcomes: depressive symptoms, perceived financial strain, and perceived quality of the Veteran's health care. Additional well-being measures also examined include the Zarit Burden Inventory and positive aspects of caregiving. Results: The survey sample comprised of 92 caregivers approved for PCAFC and 66 caregivers not approved. The mean age of responding caregivers was 45; over 90% of caregivers were female; and over 80% of caregivers were married in both groups. We find promising trends in well-being associated with PCAFC participation. First, the perception of financial strain declined among participants compared to non-participants. Second, while depressive symptoms did not improve for the PCAFC caregivers, depressive symptoms increased among non-participants. Third, perceived quality of the Veteran's VA healthcare was no different between participants and non-participants. However, the 158 returned surveys reflect only a 5% response rate; hence this evidence is preliminary. Conclusion: Despite cautioning that results be interpreted as preliminary, this study provides unique descriptive information about young caregivers of U.S. post-9/11 Veterans, and offers a first step in filling the evidence gap about how comprehensive caregiver support in the U.S. may affect caregiver well-being. These preliminary findings should be explored and validated in a larger sample.

Access source material through DOI

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

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

Access source material through DOI

Active involvement of family members in postoperative care after esophageal or pancreatic resection: A feasibility study

Background: Active involvement of relatives has the potential to improve postoperative patient outcomes by prevention of complications sensitive to basic care and unplanned readmissions. The aim of this study was to assess the feasibility of a program in which relatives participated in postoperative care.; Methods: A pragmatic feasibility trial conducted at the surgical ward of a University hospital in the Netherlands. Patients undergoing esophageal or pancreatic resection with a relative who was willing and able to participate formed the intervention group (n = 20). A control group (n = 20) received usual postoperative care. The program consisted of the following: (1) information; (2) shared goal setting; (3) task-oriented training; (4) participation in basic care, focusing on mobilization, breathing exercises, cognitive activities and oral hygiene; (5) presence of relatives during ward rounds; and (6) rooming-in. Feasibility criteria were adherence to basic care, caregiver burden, and satisfaction of patients, family, and healthcare professionals.; Results: All participants completed the program. Patients in the intervention group mobilized more (estimated difference for walking 170 meters per day, P = .037, and for sitting 109 minutes per day, P < .001), and showed more adherence to breathing exercises (estimated difference per day 1.4, P = .003), oral hygiene (estimated difference 1.52, P = .001), and cognitive activities (estimated difference 2.6, P < .001). Relatives'Care-Related Quality of Life instrument score did not deteriorate over time (P = .64); 96% of relatives would recommend the program and 92% felt better prepared for discharge. Patients in the intervention group were more satisfied with hospital admission. Healthcare professionals valued the program positively.; Conclusion: This program is feasible and is positively appreciated by patients, family, and healthcare professionals. Patients following the program showed more adherence to basic care activities.

Access source material through DOI

Effectiveness of Structured Teaching Programme on the Knowledge about Rehabilitation of Stroke Patients among Caregivers in a Selected Hospital, Kolkata, India

Introduction: Stroke is a major global health problem and second leading cause of death worldwide. In India, the incidence of stroke rate has increased from 56/100,000 person to 117/100,000 person. Stroke rehabilitation is an active process and begins during acute hospitalisation. Stroke survivors may return to an active and productive lifestyle through rehabilitation. Aim: To determine the effectiveness of Structured Teaching Programme (STP) on the knowledge about rehabilitation of stroke patients among caregivers. Materials and Methods: A pre-experimental pre-test, posttest research design was used to conduct this study. Purposive sampling was the sampling method used to collect data from family caregivers of stroke survivors on the basis of semistructured interview schedule. After collecting pre-test data, STP was organised for intervention of stroke rehabilitation to samples. Seven days were provided to the samples for utilising STP which was organised for 45-50 minutes through lecture, discussion and planned Audio-Visual (AV) aids. Posttest information was gathered after seven days from the day of teaching intervention. Seven days was assigned after getting expert opinions as well as to give time for implication of knowledge through practice of stroke rehabilitation. The sample characteristics were described by frequency, percentage and t-test was used to describe the difference between pre-test and post-test knowledge score. Chi-square test was also used to find out the association between knowledge of caregivers regarding stroke rehabilitations and selected demographic variables. Results: The mean pre-test knowledge score was 9.76 and mean post-test knowledge score was 14.7. There was a statistically significant improvement in the level of knowledge regarding stroke rehabilitations among caregivers (t0.001,29=3.659) and no association was found between pre-test knowledge level and selected demographic variables. Conclusion: The demand of stroke rehabilitation by involving family caregivers is increasing as it will help stroke patient to improve activity of daily livings as well as decrease disability and prevent complications. 

Access source material through DOI

Caregiver-guided pain coping skills training for patients with advanced cancer: Background, design, and challenges for the CaringPals study

Background/Aims: Pain is a major concern of patients with advanced cancer and their caregivers. There is strong evidence that pain coping skills training interventions based on cognitive-behavioral principles can reduce pain severity and pain interference. However, few such interventions have been tested for patients with advanced cancer and their family caregivers. This study aims to test the efficacy of a caregiver-guided pain coping skills training protocol on patient and caregiver outcomes. Methods: A total of 214 patients age ≥18 with Stage III–Stage IV cancer and moderate to severe pain, along with their family caregivers, are being identified and randomized with a 1:1 allocation to the caregiver-guided pain coping skills training intervention or enhanced treatment-as-usual. Dyads in both conditions receive educational resources on pain management, and the caregiver-guided pain coping skills training intervention includes three weekly 60-min sessions conducted with the patient–caregiver dyad via videoconference. Measures of caregiver outcomes (self-efficacy for helping the patient manage pain, caregiver strain, caregiving satisfaction, psychological distress) and patient outcomes (self-efficacy for pain management, pain intensity and interference, psychological distress) are collected at baseline and post-intervention. Caregiver outcomes are also collected 3 and 6 months following the patient's death. The study is enrolling patients from four tertiary care academic medical centers and one free-standing hospice and palliative care organization. The primary outcome is caregiver self-efficacy for helping the patient manage pain. Results: This article describes challenges in the design and implementation of the CaringPals trial. Key issues for trial design include the identification and recruitment of patients with advanced cancer and pain, and the follow-up and collection of data from caregivers following the patient's death. Conclusion: The CaringPals trial addresses a gap in research in pain coping skills training interventions by addressing the unique needs of patients with advanced cancer and their caregivers. Findings from this study may lead to advances in the clinical care of patients with advanced cancer and pain, as well as a better understanding of the effects of training family caregivers to help patients cope with pain.

Access source material through DOI

Improving access to a multi-component intervention for caregivers and people with dementia

Due to the increasing social and economic costs of dementia, there are urgent calls to develop accessible and sustainable care for people with dementia and their caregivers. Multi-component non-pharmacological interventions (NPIs) appear effective in improving or maintaining daily functioning and well-being, but are typically labour-intensive for health care professionals, thus hindering access. The current study aimed to explore the feasibility and acceptability of a novel approach to widen access to NPI by involving caregivers to present part of the intervention and with staff from local support organizations instructed to train the caregivers. Trainers and caregivers were shown to comply with training instructions and the direct intervention costs were low. Feedback from trainers and caregivers was positive and well-being ratings from people with dementia and caregivers remained stable over time and caregivers’ sense of competence improved. The findings suggest that involving caregivers and trained non-professionals to provide the intervention is feasible and acceptable and could be a cost-effective solution to improve access to care.

Access source material through DOI

Pilot Study of a Transitional Intervention for Family Caregivers of Older Adults

Objective : To conduct a formative evaluation of a transitional intervention for family caregivers, with assessment of feasibility, acceptability, appropriateness, and potential benefits. Methods : The intervention aimed to provide emotional support, information on community resources, and information and support for development of coping skills for the caregivers of patients aged 65 and older who were to be discharged home from an acute medical hospital admission. We used a one-group, pre- and three-month post-test study design. Results: Ninety-one patient-caregiver dyads were recruited. Of these, 63 caregivers (69%) received all five planned intervention sessions, while 60 (66%) completed the post-test. There were significant reductions in caregiver anxiety and depression following the intervention, and high rates of satisfaction. Discussion: This transitional intervention should be further evaluated, preferably with a control group, either as a stand-alone intervention or as one component of a comprehensive transitional intervention for older patients and their caregivers.

Access source material through DOI

Building Family Caregiver Skills Using a Simulation-Based Intervention: A Randomized Pilot Trial

OBJECTIVES: To evaluate the feasibility, acceptability, safety, and fidelity of a psychoeducational intervention to improve family caregiver technical and communication skills using structured simulations. SAMPLE & SETTING: 18 family caregivers of adult patients receiving radiation therapy for head and neck cancer at University Hospitals Seidman Cancer Center in Cleveland, Ohio. METHODS & VARIABLES: A two-group, randomized pilot trial design was used. The intervention consisted of four one-on-one sessions between the caregiver and nurse interventionist during the patient's first, second, fourth, and sixth week of radiation treatment. Participants completed measures of self-efficacy for caregiving, anxiety, depression, and health-related quality of life at baseline, during the fifth week of radiation therapy, and four weeks after radiation therapy. RESULTS: 4 of the 9 caregiver participants completed the intervention. Improvements in scores for the intervention group were noted for self-efficacy, global mental health, anxiety, and depression. IMPLICATIONS FOR NURSING: Refinement of the intervention is needed to improve feasibility. Although a caregiver intervention that incorporates simulation for skills training is acceptable and safe, flexibility in protocol is needed.

Access source material through DOI

Brief interactive psychoeducation for caregivers of patients with early phase psychosis in Yogyakarta, Indonesia

Aim: Brief psychoeducation for families of psychotic patients has been shown to significantly increase family members' knowledge of the disorder. This increase is associated with reductions in relapse and rehospitalization. The aim of this study was to assess the effectiveness of brief psychoeducation about schizophrenia to caregivers of patients in early phases of psychotic disorders in Yogyakarta, Indonesia.; Methods: This study was a prospective, randomized trial with 2 parallel groups. Subjects were patients in the early phase of psychotic disorders and their respective caregivers. Inclusion criteria included a diagnosis of acute and transient psychotic disorders, schizophrenia, schizoaffective disorder or delusional disorder. Participants were randomly assigned to either control or intervention groups by means of paired simple randomization. A brief psychoeducation was conducted for both the patients and caregivers. The interventions were conducted in 4 interactive sessions, once per week. Effectiveness was measured using standardized instruments before the intervention, and at 1 and 6 months post-intervention. Assessment instruments included the Knowledge of Psychosis (KOP), the Compliance and Relapse Assessment, the Brief Psychiatric Rating Scale and the Positive and Negative Symptoms of Schizophrenia scale.; Results: Interventions improved KOP scores significantly in the intervention group. The intervention group had increased regularity of follow-up with health providers and improved compliance. No statistically significant difference in relapses/rehospitalization was observed.; Conclusions: This study demonstrated that brief psychoeducation with caregivers of patients with early phase psychosis was feasible in our setting, significantly improved caregivers' knowledge, and resulted in improved regularity of contact with health providers and compliance with pharmacotherapy.

Access source material through DOI

Training family to assist with physiotherapy for older people transitioning from hospital to the community: a pilot randomized controlled trial

Objective: To investigate the safety and effectiveness of augmenting physiotherapy with family-assisted therapy, to inform a future, fully powered trial.; Design: Parallel pilot randomized controlled trial.; Setting: Transition Care Program.; Participants: Thirty-five older adults with multimorbidity, recently hospitalized, with a mean age of 84.1 years (SD = 6.1 years) and mean Modified Barthel Index of 67.8 units (SD = 19.2 units), and 40 family members.; Interventions: The control group ( n = 18) received usual physiotherapy care. The experimental group ( n = 17) received usual physiotherapy care and family-assisted therapy from a family member trained by a physiotherapist.; Main Measures: Primary outcomes were falls-related self-efficacy measured by the Short Falls Efficacy Scale - International and falls during the intervention period. Secondary outcomes included daily steps, EQ-5D-3L (three-level version of the EuroQoL five-dimensional health-related quality of life questionnaire) and ICECAP-O (ICEpop CAPability measure for Older people), Modified Barthel Index and Modified Caregiver Strain Index.; Results: There were no between-group differences for falls-related self-efficacy. Relative to the control group, the experimental group was observed to have a reduced risk of falling (relative risk = 0.38, 95% confidence interval (CI) = 0.09-1.60) and a reduced falls rate (incidence rate ratio = 0.22, 95% CI = 0.04-1.20) was of borderline statistical significance. The experimental group walked a mean of 944 daily steps more than the control group (95% CI = 139-1748) and had a significant reduction in activity limitation. There were no between-group differences for quality of life or caregiver strain.; Conclusion: Augmenting physiotherapy with family-assisted therapy is feasible for older people transitioning from hospital to the community. A fully powered randomized controlled trial is indicated.

Access source material through DOI

Family Caregiving for Cancer Patients: the State of the Literature and a Direction for Research to Link the Informal and Formal Care Systems to improve Quality and Outcomes

Objectives: Based on recent shifts in reimbursement for cancer treatment from fee-for-service to bundled and value-based payment, this concluding article summarizes data from these papers and the large body of literature on caregiving to suggest how caregiving research might be redirected to link the formal with the informal systems to achieve higher-quality and lower-cost care. Caregiver dyads, the tasks of care, and strategies for training are presented.; Data Sources: Articles in this issue of Seminars in Oncology Nursing, the larger body of caregiving literature, and the Oncology Care Model driving bundled payments and value-based care.; Conclusion: Research on informal caregiving for cancer patients should begin to reframe the rich body of evidence available toward a focus on caregivers reactions to the tasks of care, the training necessary for caregivers to perform them, and how each contributes to quality care at lower costs and appropriate outcomes given patients' stage of disease and goals of treatment.; Implications For Nursing Practice: Oncology systems must take a more active role in including patients and their families as partners to manage treatments and side effects to achieve the best possible patient outcomes. They must be able to evaluate the patient and the caregiver to determine what tasks they will be able to perform, and then make sure they have the training and resources to carry out those tasks. Training could be done by social media and through communication using patient portals that could be expanded through the electronic medical records to include caregiver portals, enabling caregiver questions and reports of patients' conditions.

Access source material through DOI

Embedding caregiver support in community-based services for older adults: A multi-site randomized trial to test the Adult Day Service Plus Program (ADS Plus)

There are over five million people in the United States living with dementia. Most live at home and are cared for by family. These family caregivers often assume care responsibilities without education about the disease, skills training, or support, and in turn become at risk for depression, burden, and adverse health outcomes when compared to non-dementia caregivers. Despite over 200 caregiver interventions with proven benefits, many caregivers lack access to these programs. One approach to enhance access is to embed evidence-based caregiver support programs in existing community-based services for people with dementia such as adult day services (ADS). Here we describe the protocol for an embedded pragmatic trial designed to augment standard ADS known as ADS Plus. ADS Plus provides family caregivers with support via education, referrals, and problem solving techniques over 12 months, and is delivered on-site by existing ADS staff. Embedding a program in ADS requires an understanding of outcomes and implementation processes in that specific context. Thus, we deploy a hybrid design involving a cluster randomized two-group trial to evaluate treatment effects on caregiver wellbeing, ADS utilization, as well as nursing home placement. We describe implementation practices in 30 geographically and racially/ethnically diverse participating sites. Clinical trial registration #: NCT02927821.

Access source material through DOI

Factors Associated with Receipt of Training Among Caregivers of Older Adults

This study uses data from the 2015 National Health and Aging Trends Survey to investigate whether family and unpaid caregiver characteristics are associated with the receipt of caregiver training.

Access source material through DOI

A forgotten Army: Coping as a carer

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

Key findings

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

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

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

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

Effect of family education program on cognitive impairment, anxiety, and depression in persons who have had a stroke: A randomized, controlled study

People who have had a stroke face high risks of cognitive impairment, anxiety, and depression. Health education for family members contributes to better outcomes in various diseases, but the effects of health education on family members of people who have had a stroke are unclear. The aim of the present study was to evaluate the effects of the family member education program (FMEP) on cognitive impairment, anxiety, and depression in persons who have had a stroke. In total, 144 persons who experienced a stroke were randomly allocated to the FMEP group or control group (1:1 ratio). In the FMEP group, the FMEP and conventional treatment were provided, while in control group only conventional treatment was provided. The increase in the Montreal Cognitive Assessment (MOCA) score from baseline to 12 months (M12 – baseline) in the FMEP group was higher compared with the control group, and the FMEP led to a decreased cognitive impairment rate (MOCA score ≤26) after 12 months compared to the control group. Changes in the Hospital Anxiety and Depression Scale anxiety and depression score (M12 – baseline) decreased in the FMEP group compared with the control group. Fewer participants with depression and a lower depression grade were observed in the FMEP group compared with the control group. The FMEP could reduce cognitive impairment, anxiety, and depression in persons who have had a stroke.

Access source material through DOI

The Effect of a Family-Based Training Program on the Care Burden of Family Caregivers of Patients Undergoing Hemodialysis

Background: The family caregivers of patients undergoing hemodialysis are faced with multiple physical, psychological, social, economic, and spiritual problems that increase their care burden. The present study was conducted to determine the effects of a family-based training program on the care burden of family caregivers of patients undergoing hemodialysis.; Materials and Methods: The present controlled, randomized, clinical trial was conducted on 70 caregivers of patients undergoing hemodialysis in Ali Asghar and Zahray-e Marzieh hospitals in Isfahan, Iran, in 2017. After conducting convenient sampling, 70 participants were randomly assigned into 2 groups (35 in each group). The experimental group received the family-based training program and the control group received usual care plan. Data were collected using the Zarit Burden Scale before, immediately after, and 1 month after the intervention and were then analyzed by independent t-test, Chi-square, and Analysis of Covariance (ANCOVA) repeated measure.; Results: The results showed that both groups were homogeneous in terms of their demographic data and showed no significant differences. The main effect of group was significant, indicating a significant decrease in care burden in the experimental group after the intervention (F1,67 = 1089, p < 0.001). However, the interaction of time and group was not significant, indicating insignificant difference in burden 1 month after intervention (p > 0.05).; Conclusions: Since the family-based training program successfully reduced the burden of care immediately after intervention, similar family-based training programs are recommended to be designed and developed. However, insignificant time effect suggests further researches of long time effects of such program.

Access source material through DOI

A controlled study of the Collaborative Care Skills Workshops versus Psycho‐educational Workshops among Spanish caregivers of relatives with an eating disorder

The aim of this study was to test the hypothesis that a negative reaction to the illness would be reduced through the "Collaborative Care Skills Workshops" programme among Spanish caregivers of relatives with an eating disorder. Caregivers were randomly allocated to either the skill‐based workshops (n = 32) or psycho‐educational workshops (n = 31), and assessments were carried out over time (T0 vs. T1 vs. T2). There were no significant differences between interventions on primary or secondary caregiver outcomes or among the patients themselves. However, caregivers in both interventions showed greater improvement at T2 on accommodating and enabling behaviours and an improvement at T1 in terms of psychological distress and appraisals towards the caregiving experience. Eating pathology, psychological distress, and some indices of psychosocial adjustment were significantly lower among the patients following both interventions (T1). Overall, both interventions may be able to help caregivers and patients to decrease their psychological distress. Highlights: Involvement of family members in the treatment could be the best resource for aiding in their relative's recovery.This is the first controlled study to test the effectiveness of the Collaborative Care Skills Workshops in Spanish caregivers.Both interventions could be implemented as both help Spanish caregivers and patients.

Access source material through DOI

Mindfulness for people with long-term conditions and their family caregivers: A systematic review

This review systematically reviewed the therapeutic effects for people with LTCs and their family caregivers learning MBIs [Mindfulness-based interventions] together in a partnership. The review asked what changes in psychological wellbeing or interpersonal factors do people with LTC and their family caregivers experience when learning MBI together in a partnership.

Access source material through DOI

Cognitively-Based Compassion Training versus cancer health education to improve health-related quality of life in survivors of solid tumor cancers and their informal caregivers: study protocol for a randomized controlled pilot trial

Background: Cancer survivors and their informal caregivers (family members, close friends) often experience significant impairments in health-related quality of life (HRQOL), including disruptions in psychological, physical, social, and spiritual well-being both during and after primary cancer treatment. The purpose of this in-progress pilot trial is to determine acceptability and preliminary efficacy (as reflected by effect sizes) of CBCT® (Cognitively-Based Compassion Training) compared with a cancer health education (CHE) attention control to improve the primary outcome of depressive symptoms and secondary outcomes of other HRQOL domains (e.g., anxiety, fatigue), biomarkers of inflammation and diurnal cortisol rhythm, and healthcare utilization-related outcomes in both cancer survivors and informal caregivers. Methods: Forty dyads consisting of solid tumor survivors who have completed primary treatments (chemotherapy, radiation, surgery) and their informal caregivers, with at least one dyad member with ≥ mild depressive symptoms or anxiety, will be recruited from Tucson, Arizona, USA. Survivor-caregiver dyads will be randomized together to complete either CBCT or CHE. CBCT is a manualized, 8-week, group meditation-based intervention that starts with attention and mindfulness and builds to contemplative practices aimed at cultivating compassion to the self and others. The goal of CBCT is to challenge unexamined assumptions about feelings and behaviors, with a focus on generating spontaneous self-compassion and increased empathic responsiveness and compassion for others. CHE is an 8-week, manualized group intervention that provides cancer-specific education on various topics (e.g., cancer advocacy, survivorship wellness). Patient-reported HRQOL outcomes will be assessed before, immediately after (week 9), and 1 month after CBCT or CHE (week 13). At the same time points, stress-related biomarkers of inflammation (e.g., plasma interleukin-6) and saliva cortisol relevant for survivor and informal caregiver wellness and healthcare utilization will be measured. Discussion: If CBCT shows acceptability, a larger trial will be warranted and appropriately powered to formally test the efficacy of this dyadic intervention. Interventions such as CBCT directed toward both survivors and caregivers may eventually fill a gap in supportive oncology care programs to improve HRQOL and healthcare utilization in both dyad members. Trial Registration: Clinicaltrials.gov, NCT03459781 . Prospectively registered on 9 March 2018.

Access source material through DOI

A Randomized Controlled Pilot Study of a Manualized Intervention for Caregivers of Patients With Traumatic Brain Injury in Inpatient Rehabilitation

Objective Investigate effectiveness of a 5-session manualized intervention for addressing needs of caregivers of persons in acute traumatic brain injury (TBI) rehabilitation. Design Prospective, pilot randomized controlled trial. Setting Inpatient brain injury rehabilitation unit, level 1 trauma center. Participants Patients (N=93) with moderate-to-severe TBI and their family members were enrolled in the study with 42 randomized to the treatment group, 51 to the control group. Intervention Five-session manualized caregiver intervention with educational, stress and anxiety self-management, coping, and emotional support components. Main Outcome Measures Family Needs Questionnaire-Revised, knowledge assessment, Zarit Family Burden Scale, and Brief Symptom Inventory-18 were collected at pretreatment, posttreatment, and 3-month follow-up. Results Treatment group caregivers showed an increase in met needs for emotional, instrumental, and professional support, and brain injury knowledge from baseline to posttreatment, whereas controls did not. Between-group differences were significant for only emotional support needs. Treatment effects were not sustained at 3-month follow-up. Conclusions Caregivers of persons undergoing acute TBI rehabilitation may benefit from interventions that target their unique needs. Caregivers may require additional and longer-term supports to sustain treatment benefits.

Access source material through DOI

Do interventions that include education on dementia progression improve knowledge, mental health and burden of family carers? A systematic review

Background and Aim: The European Association of Palliative Care recommends that family carers need education on the progression of dementia. This systematic review aimed to explore whether interventions incorporating education regarding the progressive nature of dementia increased carers' understanding of dementia and improved mental health and burden.; Method: MEDLINE, PsycINFO and CINAHL were searched to April 2018. Randomised controlled trials with samples of family carers of someone with dementia were eligible. Included interventions involved a component aimed to increase the carer's understanding of the progression of dementia. Outcomes of interest included: knowledge of dementia, depression, burden and pre-death grief.; Results: Searches identified 3221 unique citations of which 11 studies were eligible for review. Interventions ranged from 4 to 16 sessions of which 1 to 3 sessions focused on the progression of dementia. Knowledge: Two studies evaluated carers' knowledge of dementia. One found no difference between the trial arms immediately after the intervention or three months later. The second found a significant intervention effect at the end of the intervention but not at three-month follow-up. Depression: Seven studies evaluated intervention effects on depression. Meta-analysis of three trials showed significant differences in mean follow-up scores favouring intervention over control. The remaining four studies did not show differences in depression between intervention and control groups. Burden: Nine studies evaluated burden and were examined in two meta-analyses (mean scores at follow-up and mean change scores from baseline to follow-up), neither of which found a benefit for intervention over control. Using the grading of recommendations assessment, development and evaluation system, we judged the quality of evidence to be very low for depression and low for burden, knowledge and pre-death grief, reducing our confidence in any of the effect estimates.; Conclusion: The evidence was not sufficient to support or refute the effectiveness of education on progression of dementia on carers' knowledge and mental health.

Access source material through DOI

Impact of self-instruction manual-based training of family caregivers of neurosurgery patients on their knowledge and care practices - A randomized controlled trial

Background: Family caregivers of operated neurosurgery patients function as informal extensions of the health system. But they are untrained and unprepared for their new role. It has been felt that their problems related to care provision can be resolved by appropriate training.; Aim: This study aimed to compare the impact of self-instruction manual-based training of family caregivers of operated neurosurgery patients on their knowledge regarding care provision and care practices.; Setting: Tertiary care hospital setting located in North India.; Design: Randomized controlled trial.; Materials and Methods: A randomized controlled trial was done among the operated neurosurgery patients and their caregiver dyads (n = 90). They were randomly allocated to receive either self-instruction manual and one-to-one training (TP1) or self-instruction manual only (TP2). Block randomization method was used. Sequentially numbered sealed envelope was used for allocation concealment. Monthly follow-up was done for 3 months. The primary outcome measure was knowledge gain of the caregivers.; Statistical Analysis Used: Chi-square test, Student's t-test, paired t-test, repeated measures analysis of variance, and Bonferroni's correction were used.; Results: The attrition rate was 15.5%. Intention-to-treat analysis was followed. Caregivers in the TP1 group had significant knowledge gain (95% confidence interval of mean difference 9.4-14.5, P < 0.05). The number of caregivers who had followed correct caregiving practices was significantly more in the TP1 group.; Conclusion: Training of caregivers by providing information along with one-to-one training is an effective strategy for improving the knowledge and skills of caregivers regarding care provision of the operated neurosurgery patients.

Access source material through DOI

The effect of patient care education on burden of care and the quality of life of caregivers of stroke patients

Background: Care for stroke patients at home is a very complicated and tough activity.; Objective: The study was conducted to examine the effect of patient care education on burden of care and quality of life of caregivers of stroke patients.; Materials and methods: The study was an educational trial conducted on 100 caregivers of the stroke patients in Al-Zahra educational hospital, Isfahan, Iran. The intervention group received some training to empower caregivers in family-oriented care in form of an educational counseling program. Data were collected and analyzed using the questionnaires, including demographic, quality of life Short Form-36, and Zarit burden of care questionnaires.; Results: The mean ages of caregivers were 48.52 years in the intervention and 45.14 years in the control groups. The results indicated significant differences in mean of quality of life and burden of care in the caregivers of the intervention group after intervention (P<0.01), which was insignificant in the control group. The average burden on the caregivers of both groups was significantly associated with health status, economic status, marital status, the number of children, care hours, care days, and familial relationship of the caregivers with the patients (P<0.01) before intervention. In addition, quality of life of both groups was significantly related to their health status (P<0.01) before intervention.; Conclusion: Patient care education reduced the burden of care and improved quality of life of the caregivers of stroke patients. Thus, to reduce the complications of caring for stroke patients, family education should be the priority of nursing and discharging procedures.

Access source material through DOI

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

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

Access source material through DOI

Self-Care System for Family Caregivers of Cancer Patients Using Resonant Breathing with a Portable Home Device: A Randomized Open-Label Study

Background: Self-care systems for early-stage specialist palliative care for cancer patients and their family caregivers have received much attention recently. Resonant breathing is an established method for maximizing heart rate variability (HRV), but it has not been implemented for home self-care. Objective: We aimed to examine the usefulness and ease of implementation for family caregivers to administer resonant breathing using a portable device at home. Design: We divided caregivers into two groups—a home self-care group and a control group—and we conducted a randomized open-label study, with rate of change in HRV being the primary outcome. Setting/Subjects: We administered HRV biofeedback (HRV-BF) using resonant breathing to 54 family caregivers who felt burdened by their nursing care responsibilities. Results: Among the self-care group, 92.6% of participants completed the study in their homes; 28 days after intervention initiation, the resonant breathing implementation rate at home was 86.1%. There was an interaction between time course and grouping in our HRV comparisons: the change rate in the home self-care group was higher during HRV-BF than before HRV-BF. Conclusions: Because family caregivers in our study learned to quickly administer resonant breathing using a portable device at home, resonant breathing improved rapidly, along with autonomic nerve function and quality of life.

Access source material through DOI

A Randomized Controlled Trial of Group Psychoeducation for Carers of Persons With Borderline Personality Disorder

Carers of persons with borderline personality disorder (BPD) experience high burden. Treatment guidelines advocate involving carers in comprehensive therapy approaches. This study is a randomized controlled trial of group psychoeducation, compared to waitlist. Group psychoeducation involved 6–8 carers per group and focused on improving relationship patterns between carers and relatives with BPD, psychoeducation about the disorder, peer support and self-care, and skills to reduce burden. Carers were randomized into intervention (N = 33) or waitlist (N = 35). After 10 weeks, those in the intervention reported improvements in dyadic adjustment with their relative, greater family empowerment, and reduced expressed emotion, sustained after 12 months. There were also improvements in carers' perceptions of being able to play a more active role, such as interacting with service providers. This study demonstrates that providing structured group programs for carers can be an effective way of extending interventions to a group experiencing high burden. 

Access source material through DOI

Including and Training Family Caregivers of Older Adults in Hospital Care: Facilitators and Barriers

Background: Despite the role caregivers play in the delivery of care, the interactions and training methods used with caregivers during an inpatient stay are not clear.; Purpose: The purpose was to examine interactions and training methods used with caregivers during hospital care.; Methods: A mixed-methods case study was conducted. Observations were summarized and interviews were analyzed using thematic analysis.; Results: The frequency of caregiver engagement varied at different points in the care process but was highest among observations during the stay care point. Providers were most commonly using written and verbal instructions to train caregivers. Three themes emerged from the interviews and were described to be both facilitators and barriers to caregiver involvement: experience, time, and relationship.; Conclusions: High-quality person and family-centered care depends upon coordinated efforts among health care systems, providers, patients, and caregivers. Future caregiver initiatives should aim to decrease disengagement, increase assessment, and broaden the use of training methods.

Access source material through DOI

A Problem-Solving Intervention for Hospice Family Caregivers: A Randomized Clinical Trial

Objectives: Family caregivers of hospice patients have multiple needs as they try to cope during a stressful time. Translatable interventions effective in improving caregiver outcomes are greatly needed. Our objective was to assess the impact of a problem-solving intervention (called Problem-Solving Intervention to Support Caregivers in End-of-Life Care Settings [PISCES]) to support hospice caregivers on caregiver quality of life and anxiety, and compare its effectiveness delivered face to face and via videoconferencing.; Design: In this 4-year randomized clinical trial, caregivers were randomly assigned to a group receiving standard care with added "friendly calls" (attention control [AC] group), a group receiving standard care and PISCES delivered face to face (F2F), or a group receiving standard care and PISCES delivered via videoconferencing (VC).; Setting: Home hospice.; Participants: A total of 514 caregivers participated (172 in AC, 171 in F2F, and 171 in VC). Caregivers were predominantly female (75%); mean age was 60.3 years.; Intervention: PISCES includes a structured curriculum delivered in three sessions and motivates caregivers to adopt a positive attitude, define problems by obtaining facts, set goals, and generate and evaluate solutions.; Measurements: Quality of life was measured by the Caregiver Quality of Life Index-Revised; anxiety was measured by the Generalized Anxiety Disorder 7-Item. Other measures included the Caregiver Reaction Assessment scale, demographic data, and an exit interview.; Results: Compared with AC, caregivers in the F2F condition had postintervention reduced anxiety (-1.31 [95% confidence interval [CI] = -2.11 to .50]; p = .004) and improved social (.57 [95% CI = .19-.95]; p = .01), financial (.57 [95% CI = .21-.93]; p = .004), and physical quality of life (.53 [95% CI = .19-.87]; p = .01). There were no differences in caregivers in the VC condition compared with the AC condition.; Conclusion: The PISCES intervention improves caregiver outcomes and is effective when delivered in person. How to integrate technology to reduce the intervention delivery cost warrants further investigation.

Access source material through DOI

The Effectiveness of Psychoeducational Support Groups for Women With Breast Cancer and Their Caregivers: A Mixed Methods Study

Background: Previous studies on the effectiveness of psychological interventions in oncology mainly used quantitative measures and no study was conducted with regard to both caregivers and patients. Aim: This study evaluates the effectiveness of psychoeducational support groups, both for women with breast cancer, and for their informal caregivers through the use of quantitative and qualitative measures. Methods: A longitudinal design was used comparing two psychoeducational support groups with other two groups in a standard care control condition. Participants were 28 women with a diagnosis of breast cancer in the care of a hospital in Northern Italy, and 21 family caregivers. The quantitative data were collected by Cognitive Behavioral Assessment for Outcome Evaluation (CBA-OE) and the qualitative data through the use of semi-structured interviews. Results: The statistical analysis showed a significant change attributable to the psychological intervention that proves the effectiveness of such an intervention in the patients' and caregivers' group. The qualitative analysis allowed us to interpret the behavioral and psychological profile emerging from CBA-OE, by considering the subjective experience of the treatment groups. The group experience offered affective, relational and informative support, and allowed participants to create a network and to feel understood and reassured. Conclusion: The results suggest the usefulness of psychoeducational support groups for women with breast cancer and for their caregivers. The value of this kind of intervention is not only at an individual level but also at a systems level, and family involvement ensures the best positive outcomes.

Access source material through DOI

Is training for informal caregivers and their older persons helpful? A systematic review

Background: The steady increase in the number of people suffering from chronic diseases and increasing life expectancy raises new demands on health care. At the same time, the need for informal caregivers is increasing. This study aims to perform a systematic review of the methodologies used to identify effect of different types of training on informal caregivers and their older persons.; Methods: MEDLINE (PubMed), CINAHL and Ovid were searched from December 2016 and April 2017. The following keywords were used; "informal caregiver", "training" "elderly", older persons". Identified publications were screened by using the following inclusion criteria; systematic reviews, randomized controlled trials, prospective cohort and multicentre studies, English language full text journals, samples or interventions that included caregivers of older persons and published in last 10 years.; Results: Twenty four studies (12 randomised control trials, 8 intervention studies and 4 systematic reviews) were included. Most of the randomized controlled trials involved both caregivers and elderly. Pretests and post-tests were used in intervention studies (5 out of the 8 studies). ICT-based, psychosocial interventions on family caregivers' education program for caregivers were applied. Caregivers following a supportive educative learning had a significantly better quality of life.; Conclusions: The findings of this systematic review suggest that support interventions for caregivers can be effective in reducing caregivers' stress, with a consequent improvement of the quality of care. However, results are based on relatively small studies, reporting somewhat controversial findings supporting the need to perform further research in this field.

Access source material through DOI

Family-led rehabilitation in India (ATTEND)—Findings from the process evaluation of a randomized controlled trial

Background: Training family carers to provide evidence-based rehabilitation to stroke patients could address the recognized deficiency of access to stroke rehabilitation in low-resource settings. However, our randomized controlled trial in India (ATTEND) found that this model of care was not superior to usual care alone. Aims: This process evaluation aimed to better understand trial outcomes through assessing trial implementation and exploring patients’, carers’, and providers’ perspectives. Methods: Our mixed methods study included process, healthcare use data and patient demographics from all sites; observations and semi-structured interviews with participants (22 patients, 22 carers, and 28 health providers) from six sampled sites. Results: Intervention fidelity and adherence to the trial protocol was high across the 14 sites; however, early supported discharge (an intervention component) was not implemented. Within both randomized groups, some form of rehabilitation was widely accessed. ATTEND stroke coordinators provided counseling and perceived that sustaining patients’ motivation to continue with rehabilitation in the face of significant emotional and financial stress as a key challenge. The intervention was perceived as an acceptable community-based package with education as an important component in raising the poor awareness of stroke. Many participants viewed family-led rehabilitation as a necessary model of care for poor and rural populations who could not access rehabilitation. Conclusion: Difficulty in sustaining patient and carer motivation for rehabilitation without ongoing support, and greater than anticipated access to routine rehabilitation may explain the lack of benefit in the trial. Nonetheless, family-led rehabilitation was seen as a concept worthy of further development.

Access source material through DOI

Study of an Educational Programme in Dementia Care for Family Carers in Taiwan

Currently there is a lack of understanding of dementia by the general public in Taiwan, and more importantly, those who care for dementia suffers. The aim of the current Educational Programme (EP) was to help the participants increase their knowledge of dementia, and thus to strengthen their caring skills for dealing with the Older Adults with Dementia (OAwD). The programme involved 282 participants and took 15 months to complete. All those participated were non-professional, private carers who looked after their family members that suffer from dementia. It was demonstrated that such a programme was greatly beneficial to participants in gaining knowledge about dementia, learning more caring skills, and other valuable information included in the educational programme curriculum. It was evident that after completion of the programme, the participants became more aware of the available community resources and more likely to access those additional support. All participants showed strong interest in repeating the educational programme to further enhance their caring skills.

Access source material through DOI

Meta-Analysis of Caregiver-Directed Psychosocial Interventions for Schizophrenia

With the recent movement toward a personal-recovery paradigm to treat schizophrenia, the locus of mental health care delivery has shifted toward community-based care. Family caregivers comprise a substantial component of that community, and are often providing care for longer periods, but often have no formal training or support. Caregiver-directed psychosocial interventions (CDPI) have been developed to train and assist caregivers in their efforts to maximize the odds of treatment success for those in their care. This meta-analysis compared CDPI versus treatment as usual (TAU) on outcomes such as hospitalization, relapse, non-compliance, and “other outcomes” (emergency services utilization, suicide attempt, and death). A systematic literature search (2005–2015) was conducted to identify randomized controlled trials of outpatient administered CDPI versus TAU to treat adult patients recovering from schizophrenia. Relative risks (RR) with 95% confidence intervals derived via random effects meta-analysis were calculated to compare CDPI versus TAU on the aforementioned outcomes. Eighteen of the 693 citations were retained for analysis. Overall RR for CDPI versus TAU suggested improved outcomes associated with CDPI: hospitalization [0.62 (0.46, 0.84) p < 0.00001], relapse [0.58 (0.47, 0.73) p < 0.00001] and other outcomes [0.70 (0.19, 2.57) p = 0.59]. CDPI was associated with significantly better compliance with medication and clinical activities combined [0.38 (0.19, 0.74) p = 0.005]. Medication compliance alone favored CDPI but was non-significant. Compliance with clinical activities alone favored CDPI significantly [0.22 (0.11, 0.47) p < 0.00001]. CDPI is associated with reductions in hospitalization, relapse, and treatment non-compliance.

Access source material through DOI

Expanding Knowledge: From workshops to educational materials, PVA Education Foundation grants help improve the lives of those with SCI/D, their families and caregivers

The article reports on the number of grants given by the Education Foundation of the Paralyzed Veterans of America (PVA) that will deliver knowledge through person-to-person interactions at conferences and symposia. It outlines the six categories in which education grants can be awarded. It notes that the next Education Foundation grant cycle will be open on September 1, 2018.

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

Improving health care communication for caregivers: A pilot study

With the growing older adult population, there will also be more informal caregivers assisting friends and family with their health care. With the increasing complexity of health care, improved caregiver communication skills have the potential to reduce caregiver burden and frustration and improve care recipient health. The primary goal of this project was to develop and refine the content and teaching methods of a small-group behavioral change program to improve communication between caregivers of older adults and health care professionals. The authors developed the Care Talks program for improving communication between caregivers and health care professionals. They conducted a prospective cohort feasibility study of the intervention to assess caregiver communication confidence at baseline and one month postintervention. Six participants were enrolled. Of the 15 participants who answered the question, 15 (100%) would recommend this program to a friend. There was significant improvement in a 10-question composite of communication confidence pre/post scores from 74.1 to 79.6 p = .03. This small-group behavioral change intervention significantly improved communication confidence for this sample of caregivers. Further research is needed to determine the long-term effects of this program on caregivers and care recipients.

Access source material through DOI

Modifying illness beliefs in recent onset psychosis carers: Evaluating the impact of a cognitively focused brief group intervention in a routine service

Aims: At first-episode psychosis (FEP), many patients will be routed within familial networks and supported by informal carers who are predominately close family members such as parents. Carer burden, distress and poorer coping styles are associated with different illness beliefs. The current study sought to examine the impact and acceptability of a 3 session, cognitively informed, group intervention targeting illness beliefs previously linked to distress and poorer caregiving experiences in FEP carers.; Methods: Carers attending a routine FEP service were invited to attend the group intervention and completed a measure of illness beliefs at baseline and post intervention.; Results: Data on 68 carers with complete datasets are presented. Carers were predominately females (64.2%). Group attendance was linked to positive improvements in carer baseline beliefs about the negative consequences of the illness for the patient and themselves, attributions of blame about the illness to the patient and themselves and their overall understanding about the illness. Significant improvements in their understanding of the illness timeline and course, and confidence in dealing with difficulties were also identified.; Conclusions: A cognitively informed group approach to targeting the less adaptive illness beliefs reported by FEP carers may offer an effective and acceptable pathway to facilitate their understanding of the illness and adjustment. Further studies using controlled designs are required.

Access source material through DOI

A cluster randomized controlled trial to test the feasibility and preliminary effectiveness of a family dementia caregiver intervention in Vietnam: The REACH VN study protocol

Background: Resources for Enhancing All Caregivers Health in the Department of Veterans Affairs (REACH VA) is an evidence-based intervention supporting family dementia caregivers that has been shown to improve caregiver outcomes for culturally diverse populations in the United States. However, this model has not been tested in low- and middle-income countries (LMICs) including Vietnam, where community-based psychosocial interventions are urgently needed. The objectives of this study are to assess the feasibility and preliminary effectiveness of a culturally adapted version of the Resources for Enhancing All Caregivers Health in Vietnam (REACH VN).; Methods: A cluster randomized controlled trial (RCT) will be conducted over a 6-month period in Soc Son district located in Hanoi. An expected sample of 10 to 12 communes, representing approximately 50 dementia primary caregivers, will be randomized to either the REACH VN intervention or an enhanced control condition. Inclusion criteria for the caregiver include age ≥18, family member who provides the most day-to-day care for person with dementia, and a total score for the brief (4 item) Zarit Burden Scale of ≥6. Over the course of 2 to 3 months, each participant in the intervention group will receive the REACH VN intervention comprised of 4 core sessions on problem solving, mood management/cognitive restructuring, stress management, and communication, and up to 2 additional sessions based on caregiver's needs. The enhanced control group will receive a single session that provides verbal and written information on dementia. Caregiver outcomes will be assessed at baseline (i.e., time of enrolment) and 3 months. The feasibility will be assessed with regard to recruitment, retention, treatment adherence, treatment fidelity, and assessment processes. For preliminary effectiveness, we will examine caregiver burden as the primary outcome and changes in caregiver depressive symptoms and in Alzheimer disease knowledge as secondary outcomes.; Discussion: This is the first study to test community-based family dementia caregiver intervention in Vietnam. Results from this study will provide the foundation for a larger effectiveness trial and broader dissemination in Vietnam and may help inform efforts to develop similar community-based family dementia caregiver support programs in other LMICs.; Trial Registration: ClinicalTrials.gov, ID: NCT03587974. 

Access source material through DOI

An Evaluation of the Family Informal Caregiver Stroke Self-Management Program

Background: Caregivers are often unprepared and overwhelmed with the responsibilities of providing care to stroke survivors, which can lead to negative physical and psychological effects.; Purpose: To evaluate the impact of the Family Informal Caregiver Stroke Self-Management (FICSS) program on burden and life changes resulting from providing care among family caregivers of stroke survivors.; Methods: A prospective pre-test and post-test design using quantitative and qualitative data was used to evaluate the program with a convenience sample of 42 caregivers. The four-module facilitated program consisted of small group-guided discussion. Quantitative evaluations were completed at baseline, 2 weeks and 6 months (post-intervention), and qualitative data were collected at 2 weeks and 6 months. Life changes and burden were measured using the Bakas Caregiving Outcome Scale (BCOS) and the Oberst Caregiving Burden Scale (OCBS), respectively.; Results: The BCOS scores increased consistently over time, showing significant differences at 6 months compared with 2 weeks (mean difference: 5.29, 95% confidence interval [CI]: 0.30-10.28, p=0.04) and baseline (mean difference: 7.58, 95% CI: 2.92-12.23, p=0.001). The OCBS time scores decreased consistently over time, showing a significant difference at 6 months compared with baseline (mean difference: -5.20, 95% CI: -0.96 to -9.44, p=0.02). The OCBS difficulty scores fluctuated over time, resulting in no overall difference from baseline to 6 months. Qualitative themes were consistent with the positive quantitative findings.; Conclusion: Study results suggest that the FICSS program may result in reduced caregiver burden and improved life changes resulting from providing care.

Access source material through DOI

Impact of Penny Brohn UK's Living Well Course on Informal Caregivers of People with Cancer

Objectives: This study evaluated the change in the concerns, wellbeing, and lifestyle behaviors of informal caregivers of people with cancer attending Penny Brohn UK's Living Well Course (LWC), a self-management education intervention. Design: A pre–postcourse design collected self-reported quantitative and qualitative data from informal caregivers attending a LWC. Setting/Location: Penny Brohn UK is a United Kingdom-based charity (not-for-profit) providing specialist integrative, whole person support, free of charge, to people affected by cancer. Subjects: Informal caregivers taking part in a Penny Brohn UK LWC between June 2014 and May 2016 attending alongside the person with cancer. Intervention: The LWC is a structured 15 h, multimodal group self-management educational course, designed to help people affected by cancer learn tools and techniques to help build resilience. Trained facilitators deliver LWCs to around 12 people with various types and stages of cancer and their informal caregivers. Outcome measures: Measure Yourself Concern and Wellbeing (MYCaW) completed precourse and at 6 weeks postcourse; and bespoke 6-week follow-up Patient Reported Experience Measure. Results: Four hundred eighty informal caregivers attended a LWC June 2014 to May 2016. One hundred eighteen completed a 6-week follow-up MYCaW: MYCaW Concerns 1 and 2 showed statistically significant improvements (p < 0.0001), there was no significant improvement in wellbeing. Informal caregivers' most reported concerns relating to themselves were psychological and emotional issues (59%). The primary concern of the caregiver for the care recipient was related to the physical health of the person with cancer (40%). Eighty-seven percent of responding informal caregivers stated that the LWC enabled health self-management. Conclusions: The LWC was followed by an improvement in informal caregivers' concerns, and increased self-management of their own health needs. More studies, with larger sample size, are needed to explore if better self-management by informal caregivers may also lead to improvements in patients' health and wellbeing. 

Access source material through DOI

Development and validation of assessment of psycho-education of carers questionnaire: An early experience

Background and Objective: Psycho-education is an intervention integrating psychotherapeutic and educational strategies. Whilst carer psycho-education is known to aid in psychiatric disorders, at present there is no known tool to assess the degree to which this is routinely provided by mental health professionals. Our objective was to develop and validate a tool, in English, which assesses psycho-education of carers of psychiatric patients in Pakistan. Methods: A questionnaire was generated in English. It was pretested on twenty male and female carers and was refined to attain a more reliable version. Sixty bilingual male and female primary carers, who were fluent in English, and had been in a care-giving role for more than three months were requested to complete the developed Questionnaire for the Assessment of Psycho-Education of Carers (APEC) at Fatima Memorial Hospital Psychiatry Out-patient department within a period of four months from December, 2017 to April, 2018. Carers were identified via patients presenting to a psychiatric OPD. Responses were analyzed for reliability and test retest consistency using Cronbach's alpha analysis, Intraclass correlation coefficients, factor analysis and Paired t-test. Results: APEC was found to be easily understandable and capable of adequately assessing aspects of psycho-education. A high degree of internal consistency was demonstrated on cronbach's alpha analysis. Cronbach's α coefficient for various domains was sufficiently high ranging from 0.76 to 0.960. Similarly, domains of (APEC) were highly correlated. Test-retest reliability was assessed by computing the correlation between Visits 1 and 2 scores. Conclusion: The developed questionnaire can adequately assess psycho-education of primary carers in mental health settings. 

Access source material through DOI

The effects of a multidisciplinary education course on the burden, health literacy and needs of family caregivers

Chronic diseases are mostly managed by family caregivers that often face the "caregiver burden". This study aimed to understand whether a multidisciplinary theoretical-practical training course could influence the burden, health literacy and needs of caregivers. Seventy-six familial caregivers were asked to complete the Caregiver Burden Inventory-CBI, Caregiver Needs Assessment-CNA, and Health Literacy Questionnaire-HLQ, before and after the course. A significant decrease in CBI and an increase of CNA were observed. However, a significantly higher rate of CBI decrease and a lower increase of CNA were detected in the neurological compared to the oncological group (p = 0.001). Moreover, the ability of the participants to look for and find health information significantly improved. The course contrasted caregivers' burden, increased their search for health information, and revealed their requiring of training and emotional and social support. Caregiver education plays a pivotal role in the management of chronic patients, enhancing the quality of life of both patients and caregivers. Highlights • Caregivers' ability to care for chronic patients can affect patients' outcomes. • Caregivers' needs assessment and education are often neglected in healthcare. • A training course positively influenced caregivers' burden, health literacy and needs. • Caregivers' education is fundamental for the management of chronic patients.

Access source material through DOI

Improving Coping Styles in Family Caregivers of Psychiatric Inpatients Using Planned Behavior Problem-Solving Training

Background: The consequences and high costs of psychiatric disorders impact family caregivers greatly. Health services should identify and provide accessible support programs to facilitate effective caregiver coping.; Purpose: The aim of this study was to determine the effectiveness of a theory-of-planned-behavior-based problem-solving training program on the coping styles of family caregivers of psychiatric inpatients.; Methods: In this two-group, randomized control trial, 72 family caregivers were randomly assigned to either a control group receiving standard care or an intervention group receiving a training program (eight sessions over 4 weeks). Demographic information was recorded at baseline, and the Coping Inventory for Stressful Situations was administered to both groups at baseline, immediately postintervention, and 1-month follow-up.; Results: Immediately after the intervention, the intervention group earned significantly higher task-oriented coping style scores (mean difference = 5.03, p = .015) than the control group, but no significant difference was detected between the two groups for either emotion- or avoidance-oriented coping style scores. At 1-month follow-up, the intervention group earned significantly higher scores than the control group for task-oriented (mean difference = 8.56, p < .001) and emotion-oriented (mean difference = 7.14, p = .002) coping styles. No improvement in avoidance-oriented coping style at the postintervention or follow-up time points was detected.; Conclusions: Implementation by nurses and other health professionals of problem-solving training programs that are based on the theory of planned behavior is recommended to strengthen the use of task- and emotion-oriented approaches that help family caregivers of psychiatric patients better cope with stress.

Access source material through DOI

Effectiveness of psychosocial interventions in reducing grief experienced by family carers of people with dementia: A systematic review

Background Family carers of people living and dying with dementia experience grief. The prevalence, predictors and associated factors of grief in this population have been identified, and psychosocial interventions to decrease grief symptoms have been implemented. However, the effect of psychosocial interventions on family carers’ grief, loss or bereavement has not been examined. Objective To synthesize the existing evidence regarding the impact of psychosocial interventions to assist adjustment to grief, pre- and post-bereavement, for family carers of people with dementia. Inclusion criteria Types of participants Family carers of older persons with dementia (>65 years). Types of interventions Psychosocial interventions in health and social care facilities, and community settings designed to assist family carers adjust to grief during the dementia trajectory and/or following death. Comparisons No treatment, standard care or treatment as usual, or an alternative intervention. Types of studies Experimental and epidemiological study designs. Outcomes Grief in family carers including anticipatory, complicated and prolonged grief disorder measured with validated instruments. Search strategy A three-step strategy sought to identify both published and unpublished studies from 1995. Methodological quality Assessed by two independent reviewers using standardized critical appraisal tools from the Joanna Briggs Institute Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI). Data extraction The standardized data extraction tool from JBI-MAStARI was used by two reviewers independently. Data synthesis Statistical pooling of results was not possible due to the heterogeneity of the interventions and the outcome measures. Results Data were extracted from three studies. Study designs were a randomized controlled trial; a pre-test, multiple posttest quasi-experimental; and a single group, repeated measures. The interventions were multi-component, had durations of nine to 26 weeks and were delivered while care recipients were alive. All studies were undertaken in the United States. There were 327 family carers, of which 197 received a psychosocial intervention. Family carers were predominantly female (84.7%), Caucasian (73.4%) and caring for their spouse (44.3%). All care recipients had dementia; 68.5% had Alzheimer’s disease. Two studies measured anticipatory grief, and the third study reported normal and complicated grief. Moderate benefits to anticipatory grief were evident upon completion of the “Easing the Way” intervention (effect size -0.43, P = 0.03). After controlling for research design and control variables, for every hour increase in the interventions focusing on family carers’ cognitive skills, there were associated decreases in carers’ normal grief (parameter estimate [PE]= -0.81, P = 0.02) and complicated grief (PE=-0.87, P = 0.03). For every hour increase in the interventions focusing on carer behavior, there was an associated decrease in carers’ complicated grief (PE = -1.32, P = 0.04). For every hour increase in the interventions focusing on care recipient behavior, there was an associated decrease in carers’ complicated grief (PE = -2.91, P = 0.04). Conclusion There is little evidence upon which to base practice with regard to interventions to reduce any aspects of grief. Findings suggest that different pre-death interventions might be warranted depending upon a family carer’s unique clinical presentation and combination of risk factors. Cognitive skills training provided while the care recipient is alive may positively impact normal and complicated grief following the death of the care recipient. When the cognitive skills training is provided in conjunction with behaviorally oriented interventions that improve the wellbeing of the carer and care recipient, carers’ complicated grief symptoms may be reduced. 

Access source material through DOI

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

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

Access source material through DOI

A Community Based Program for Family Caregivers for Post Stroke Survivors in Thailand

The purpose of this study was to evaluate the effectiveness of the post-stroke care program within the community setting in Thailand. Methods This quasi-experimental study was a nonequivalent control group pre-test and post-test design. A total of 62 pairs of post-stroke patients and their family caregivers were recruited to the study (31 pairs per group). The intervention consisted of a four-week program that included distributing pertinent information, providing skill practice during post-stroke care sessions and utilizing strategies to enhance motivation and behavioral skills of family caregivers based on the information-motivation-behavioral skills model. The family caregivers' post-stroke care skills were evaluated. The patients' activities of daily living (ADLs) and complications were evaluated at baseline and immediately and 2-month post-intervention. Statistical analysis included chi-square test, Fisher's exact test, independent t-test, and two-way repeated measures' analysis of variance. Results After participating in the program, family caregivers in the experimental group significantly improved their post-stroke care knowledge and skills as compared to those in the control group (F = 585.81,p< .001). ADLs among post-stroke patients in the experimental group significantly increased over time and were higher than those in the control group (F = 46.01,p< .001). Moreover, complications among patients in the experimental group were less than those in the control group. Conclusions The post-stroke care program improved family caregivers' post-stroke care skills which resulted in improved functional status and decreased complications among post-stroke patients.

Access source material through DOI

Communication Empowerment Framework: An integrative framework to support effective communication and interaction between carers and people living with dementia

Objectives: To demonstrate the power of integrating three theoretical perspectives (Mentalization Theory, Perceptual Control Theory and the Communicative Impact model), which jointly illuminate the communication challenges and opportunities faced by family carers of people with dementia. To point the way to how this framework informs the design and delivery of carer communication and interaction training. Method: Conceptual synthesis based on a narrative review of relevant literature, supported by examples of family carers. Results: We use the conceptual models to show how the capacity to mentalize (“holding mind in mind”) offers a greater sense of control over internal and external conflicts, with the result that they can be deescalated in pursuit of mutual goals. Conclusions: The integrative conceptual framework presented here highlights specific psychological and relational mechanisms that can be targeted through carer training to enhance communication with a person living with dementia. 

Access source material through DOI

Disseminating START: training clinical psychologists and admiral nurses as trainers in a psychosocial intervention for carers of people with dementia’s depressive and anxiety symptoms

OBJECTIVES: To put into practice and to evaluate an initial dissemination programme for the Strategies for Relatives (START), a clinically and cost-effective manualised intervention for family carers of people with dementia. SETTING: We offered three-hour 'train-the-trainer' sessions through the British Psychological Society and Dementia UK. PARTICIPANTS: Clinical psychologists and admiral nurses across the UK. PRIMARY AND SECONDARY OUTCOME MEASURES: After the training session, attendees completed an evaluation. Attendees were asked how they had implemented START six and twelve months later, and to participate in telephone interviews about their experiences of what helps or hinders implementation oneyear after training. RESULTS: We trained 134 clinical psychologists and 39 admiral nurses through 14 training sessions between October 2014 and September 2015 in nine UK locations and made materials available online. The 40 survey respondents had trained 75 other staff. By this time, 136 carers had received START across eleven service areas. Findings from 13 qualitative interviews indicated that some clinical psychologists had begun to implement START, facilitated by buy-in from colleagues, existing skills in delivering this type of intervention, availability of other staff to deliver the intervention and support from the research team. Admiral nurses did not supervise other staff and were unable to cascade the intervention. Where START has not been used, common barriers included lack of staff to deliver the intervention and family carer support not being a service priority. Participants wanted the training to be longer. CONCLUSIONS: We trained clinical psychologists and admiral nurses to deliver and implement START locally. Results from survey respondents show that it was cascaded further and used in practice in some areas, but we do not know whether START was implemented by non-respondents. Future dissemination requires management buy-in, availability of practitioners and supervisors and consideration of other ways of delivery. 

Access source material through DOI

The Effect of Problem Oriented Coping Strategies Training on Quality of Life of Family Caregivers of Elderly with Alzheimer

Elderly with Alzheimer requires care to continue their lives and such care is given mostly by families. Care of elderly with Alzheimer is a stressful process and it has negative consequences on physical and mental health of caregivers and reduces their quality of life. The present research aims to determine the effect of problem oriented coping strategies training on quality of life of family caregivers of elderly with Alzheimer. In this randomized clinical trial 72 caregivers were chosen by purposeful sampling and were divided randomly into control and experimental groups. Before the intervention, participants' quality of life was assessed by SF36 quality of life questionnaire. Eight sessions of educational intervention were held for the experimental group. The educational contents were included subjects such as problem solving, anger management and making an affective relationship. Two weeks after the intervention, information was recollected. Finding indicated that in intervention group, caregivers' quality of life significantly increased after the educational intervention (P= 0.001). After the intervention, caregivers' quality of life in experimental group was more than control group but such difference was not statistically significant (P= 0.112). Problem-oriented coping strategies training can enhance most dimensions of quality of life of caregivers and such education can be effective on their lives.

Access source material through DOI

Evaluation of a co-delivered training package for community mental health professionals on service user- and carer-involved care planning

Background There is limited evidence for the acceptability of training for mental health professionals on service user- and carer-involved care planning. Aim To investigate the acceptability of a co-delivered, two-day training intervention on service user- and carer-involved care planning. Methods Community mental health professionals were invited to complete the Training Acceptability Rating Scale post-training. Responses to the quantitative items were summarized using descriptive statistics (Miles, ), and qualitative responses were coded using content analysis (Weber, ). Results Of 350 trainees, 310 completed the questionnaire. The trainees rated the training favourably (median overall TARS scores = 56/63; median 'acceptability' score = 34/36; median 'perceived impact' score = 22/27). There were six qualitative themes: the value of the co-production model; time to reflect on practice; delivery preferences; comprehensiveness of content; need to consider organizational context; and emotional response. Discussion The training was found to be acceptable and comprehensive with participants valuing the co-production model. Individual differences were apparent in terms of delivery preferences and emotional reactions. There may be a need to further address the organizational context of care planning in future training. Implications for practice Mental health nurses should use co-production models of continuing professional development training that involve service users and carers as co-facilitators.

Access source material through DOI

Building on the recovery approach: the development of a conceptual model of service design for carers in mental health

Carers' views about their role in recovery are under-researched, and studies investigating their needs are underdeveloped. In this study, participatory action research was used; I was supported by a steering group of eight stakeholders to co-produce a training programme on recovery and data collection methods to explore the meaning of recovery for carers. The programme was delivered by me, an expert-by-experience with a diagnosis of schizophrenia, and a carer of her son with a similar diagnosis, to a group of eleven participants. Mainly qualitative data was collected together with supplementary quantitative socio-demographic data from the participants. Selected findings based on the carers' discussions are presented which focus on how the relationship between carers and professionals can most effectively facilitate service user recovery. Issues of information exchange between carers and professionals and the impact of patient confidentiality are highlighted, the nature of recovery practice is considered, and the participants' need to be regarded as 'experts' is addressed. A conceptual model of service design based on a recovery-oriented 'triangle of care' is presented. The potential implementation of this model in the current UK mental health service context is considered with the need for co-production between all stakeholders to ensure its development. 

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

Family Caregiver Training Program (FCTP): A Randomized Controlled Trial

OBJECTIVE. The purpose of this study was to examine the effectiveness of the Family Caregiver Training Program (FCTP) for caregivers of people with dementia.METHOD. A random assignment control group research design with a 3-mo follow-up was implemented.RESULTS. Thirty-six family caregivers of people with dementia demonstrated an increase in activity of daily living (ADL) knowledge (p < .001) and maintenance of that knowledge 3 mo posttest. Caregiver confidence, regardless of group assignment, improved; however, it was not maintained. Burden, depression, and occupational performance and satisfaction remained unchanged for the intervention group; however, physical health as it pertained to quality of life improved 3 mo posttest (p < .001).CONCLUSION. Findings demonstrate that the FCTP can effectively provide knowledge to family caregivers on how to assist people with dementia with ADLs. Even when standard care was provided, there was limited information on ADLs that family caregivers faced daily.

Access source material through DOI

A virtual reality intervention to improve the understanding and empathy for people with dementia in informal caregivers: results of a pilot study

Objective: Informal caregivers often experience psychological distress due to the changing functioning of the person with dementia they care for. Improved understanding of the person with dementia reduces psychological distress. To enhance understanding and empathy in caregivers, an innovative technology virtual reality intervention Through the D'mentia Lens (TDL) was developed to experience dementia, consisting of a virtual reality simulation movie and e-course. A pilot study of TDL was conducted. Methods: A pre-test–post-test design was used. Informal caregivers filled out questionnaires assessing person-centeredness, empathy, perceived pressure from informal care, perceived competence and quality of the relationship. At post-test, additional questions about TDL's feasibility were asked. Results: Thirty-five caregivers completed the pre-test and post-test. Most participants were satisfied with TDL and stated that TDL gave more insight in the perception of the person with dementia. The simulation movie was graded 8.03 out of 10 and the e-course 7.66. Participants significantly improved in empathy, confidence in caring for the person with dementia, and positive interactions with the person with dementia. Conclusion: TDL is feasible for informal caregivers and seems to lead to understanding of and insight in the experience of people with dementia. Therefore, TDL could support informal caregivers in their caregiving role.

Access source material through DOI

Caregiver Appraisal Model: understanding and treating behaviours that challenge

Practice example of a model developed to support carers in understanding and dealing with challenging behaviours. The Caregiver appraisal model is a prospective model of caregiver stress which has been developed by Northumberland County Behaviour Support Service. The model was developed from work with seven family caregivers over 12 months and provides a framework for managing their distress based on their appraisals of the situations confronting them. It is a cognitive behavioural model. The article describes how the model was developed, how it works and points of practice. Interventions directed at the person with dementia need to address unmet need. Interventions focusing on the caregiver cover three areas: psychoeducation, behavioural interventions and cognitive interventions. The authors conclude that the approach has been positively received by carers, although the sample size of cases is currently small and wider testing is required to validate its efficacy.

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

Correlates of caregiver participation in a brief, community-based dementia care management program

Purpose of the Study: The evidence base for dementia care management interventions for informal caregivers (CGs) is strong, yet enrolment and sustained engagement in academic and community-based research trials is low. This study sought to examine rates and correlates of participation in a community-based, telephone-delivered dementia care management programme designed to address logistic and practical barriers to participation in CG trials and services. Design and Methods: Participants included 290 CGs of older, community-dwelling, low-income care recipients (CRs) who met criteria for enrolment in a collaborative dementia care management programme that provides assessment, psychosocial support and education, and connection to community resources via telephone. Cross-sectional analyses examined the association between CG-related (e.g., financial status, relationship to CR, caregiving burden) and CR-related (e.g., functional limitations, symptom severity) factors and CG enrolment and engagement. Results: The majority of CGs were non-Hispanic White, female, financially stable, and adult children of the CRs. Over half of CGs lived with the CR and provided 20 or more hours of care per week. Roughly half of CGs refused care management services. Adjusted logistic regression models revealed that perceived caregiving burden and financial status were related to initial enrolment and engagement in services once enrolled, respectively. Implications: A significant proportion of CGs refuse free, convenient, evidence-based dementia care management services, underscoring the need for further examination of correlates of programme acceptance. Nonetheless, community-based programmes that address barriers may improve enrolment and engagement rates among CGs, including those who are especially vulnerable to negative CG and CR outcomes.

Access source material through DOI

Disciplinary power and the process of training informal carers on stroke units

This article examines the process of training informal carers on stroke units using the lens of power. Care is usually assumed as a kinship obligation but the state has long had an interest in framing the carer and caring work. Training carers in healthcare settings raises questions about the power of the state and healthcare professionals as its agents to shape expectations and practices related to the caring role. Drawing on Foucault's notion of disciplinary power, we show how disciplinary forms of power exercised in interactions between healthcare professionals and carers shape the engagement and resistance of carers in the process of training. Interview and observational field note extracts are drawn from a multi-sited study of a training programme on stroke units targeting family carers of people with stroke to consider the consequences of subjecting caring to this intervention. We found that the process of training informal carers on stroke units was not simply a matter of transferring skills from professional to lay person, but entailed disciplinary forms of power intended to shape the conduct of the carer. We interrogate the extent to which a specific kind of carer is produced through such an approach, and the wider implications for the participation of carers in training in healthcare settings and the empowerment of carers.

Access source material through DOI

Implementation of a multidisciplinary psychoeducational intervention for Parkinson's disease patients and carers in the community: study protocol

Background Parkinson’s disease progressively limits patients at different levels and as a result family members play a key role in their care. However, studies show lack of an integrative approach in Primary Care to respond to the difficulties and psychosocial changes experienced by them. The aim of this study is to evaluate the effects of a multidisciplinary psychoeducational intervention focusing on improving coping skills, the psychosocial adjustment to Parkinson’s disease and the quality of life in patients and family carers in a Primary Care setting. Methods This quasi-experimental study with control group and mixed methods was designed to evaluate a multidisciplinary psychoeducational intervention. Based on the study power calculations, 100 people with Parkinson’s disease and 100 family carers will be recruited and assigned to two groups. The intervention group will receive the ReNACE psychoeducational intervention. The control group will be given a general educational programme. The study will be carried out in six community-based health centres. The results obtained from the two groups will be collected for evaluation at three time points: at baseline, immediately after the intervention and at 6 months post-intervention. The results will be measured with these instruments: the Quality of Life Scale PDQ-39 for patients and the Scale of Quality of Life of Care-givers SQLC for family carers, and for all participants the Psychosocial Adjustment to Illness scale and the Brief COPE Inventory. Focus groups will be organised with some patients and family carers who will have received the ReNACE psychoeducational intervention and also with the healthcare professionals involved in its development. Discussion An important gap exists in the knowledge and application of interventions with a psychosocial approach for people with PD and family carers as a whole. This study will promote this comprehensive approach in Primary Care, which will clearly contribute in the existing knowledge and could reduce the burden of PD for patients and family carers, and also in other long-term conditions. Trial registration NCT03129425 (ClinicalTrials.gov). Retrospectively registered on April 26, 2017.

Access source material through DOI

Communication training interventions for family and professional carers of people living with dementia: a systematic review of effectiveness, acceptability and conceptual basis

Objectives: To update previous reviews and provide a more detailed overview of the effectiveness, acceptability and conceptual basis of communication training-interventions for carers of people living with dementia. Method: We searched CINAHL Plus, MEDLINE and PsycINFO using a specific search and extraction protocol, and PRISMA guidelines. Two authors conducted searches and extracted studies that reported effectiveness, efficacy or acceptability data regarding a communication training-intervention for carers of people living with dementia. Risk of bias was assessed using the Cochrane Collaboration guidelines. Quality of qualitative studies was also systematically assessed. Results: Searches identified 450 studies (after de-duplication). Thirty-eight studies were identified for inclusion in the review. Twenty-two studies focused on professional carers; 16 studies focused mainly on family carers. Training-interventions were found to improve communication and knowledge. Overall training-interventions were not found to significantly improve behaviour that challenges and caregiver burden. Acceptability levels were high overall, but satisfaction ratings were found to be higher for family carers than professional carers. Although many interventions were not supported by a clear conceptual framework, person-centred care was the most common framework described. Conclusion: This review indicated that training-interventions were effective in improving carer knowledge and communication skills. Effective interventions involved active participation by carers and were generally skills based (including practicing skills and discussion). However, improvements to quality of life and psychological wellbeing of carers and people living with dementia may require more targeted interventions.

Access source material through DOI

Feasibility of a multidisciplinary caregiving training protocol for young caregivers in families with ALS

Feasibility of a multidisciplinary caregiving training protocol for young caregivers in families with ALS. Objectives: To assess the feasibility of a multidisciplinary young caregiver group training protocol for children and youth who provide care to a family member with ALS. Method: Peer group experiential young caregiver model based on theories of self-management and self-efficacy. Training conducted by a multidisciplinary team of therapists in ALS (PT, OT, Speech and social work), as well as assistive device vendors. Demographic data, caregiving tasks and evaluations were collected. Results: The model is feasible for both youth and therapists. Youth found benefit, skill acquisition, and mastery by asking questions, teaching back skills to the group and engaging with peers. Conclusion: This project demonstrates young caregivers will participate in training, and engage with “like” peer group. Future projects will focus on developing a structured survey and observation, testing efficacy in larger groups.

Access source material through DOI

A collaborative care skills workshop for carers: Can it be delivered in 1 day?

Carers of individuals with eating disorders (EDs) report high levels of burden and distress and describe a number of unmet needs. As a result, a number of interventions have been designed to support carers, including the “Maudsley eating disorder collaborative care skills workshops,” which comprise six 2‐hr workshops delivered over 3 months for parents and carers of people with EDs. The current study aimed to test a proof‐of‐concept that this workshop could be effectively delivered in 1 day. An additional aim was to assess whether the workshop had direct effects on carer skills. A nonexperimental repeated measures research design was employed, giving measures before and after a 1‐day workshop. Results suggested significant increases in carer self‐efficacy and carer skills, with moderate to large effect sizes. Qualitative analyses supported these results whilst also generating ideas to improve the 1‐day workshop.

Access source material through DOI

Reflections on developing a blended learning recovery programme for family carers of people who have mental ill-health

Purpose The purpose of this paper is to reflect on the development of a recovery-oriented training programme for mental health care-givers. It also considers the effectiveness of using participatory research methods that promote involvement of people with diverse expertise to co-produce this programme. It presents a rationale for developing recovery-oriented training, which employs blended learning, comprising face-to-face and e-learning. Design/methodology/approach A small advisory group consisting of professionals, experts-by-experience (service users) and -by-caring (care-givers) and an academic developed a blended learning programme about the recovery approach for mental health carer-givers. This paper details the participatory approach supported by an action research cycle that contributed to the design of the programme, and the specific impact of experiential knowledge on its development. Findings Reflections on the advisory group process are described that led to the co-production of the course. This leads to consideration of the value of using this research approach to develop a carer-focused programme. The content of the recovery-oriented training programme is presented which adopts blended learning. This leads to discussion of potential of this format to improve carers’ access to training. Originality/value It is proposed that this recovery-oriented course, building on a previous study, has the potential to positively influence outcomes for the training programme participants (the care-givers) and the person they support. It is suggested that blended learning may in part overcome some of the barriers carers experience to accessing and participating in traditional interventions. Reflections on the process of co-production underline the value of participatory research in designing this recovery-oriented course for carers. 

Access source material through DOI

Effectiveness of a strength-oriented psychoeducation on caregiving competence, problem-solving abilities, psychosocial outcomes and physical health among family caregiver of stroke survivors: A randomised controlled trial

Background: Family caregivers provide the foundation for long-term home care of stroke survivors. The overwhelming stress associated with caregiving hinders the ability of family caregivers to utilise their internal and external resources to cope with this situation, thereby placing their own health at risk. We conducted a randomised controlled trial of a strength-oriented psychoeducational programme on conventional stroke rehabilitation for family caregivers. Objectives: To evaluate the effectiveness of a strength-oriented psychoeducational programme on the caregiving competence, problem-solving coping abilities, caregiver’s depressive symptoms, caregiving burden and resources (family functioning, social support) and physical health (such as caregiving-related injury), as well as potential placement of stroke survivors. Design: A prospective multi-centre and single-blinded randomised controlled trial stratified by survivors’ history of stroke. Setting and participants: Adult stroke patients and their family caregivers were recruited from the medical wards of a regional acute and two rehabilitation hospitals in the Eastern New Territories of Hong Kong. Methods: The design of the trial was based on the relational/problem-solving model. Family caregivers of stroke survivors who had been admitted to the study hospitals completed a set of questionnaires before randomisation, immediately, one- and three-months post-intervention. The control group received usual care, whereas the intervention group received an additional 26-week strength-oriented psychoeducational programme (two structured individual face-to-face pre-discharge education sessions on stroke and its associated caregiving skills and six biweekly post-discharge telephone-based problem-solving coping skills training sessions). Data were analysed using the generalized estimating equation and multiple regression models and chi-square tests. Results: We recruited 128 caregiver–survivor dyads. The intervention group demonstrated significantly greater improvements throughout the study (p < 0.01) in terms of caregiving competence, problem-solving coping abilities and social support satisfaction. This group also displayed significantly greater improvements in terms of family functioning (p < 0.05) at one-month post-intervention, an increased number of social support (p < 0.001) and a lower level of burden at three-month post-intervention. However, there was no significant effect on enabling stroke survivors to remain in their home. Post-hoc analysis showed a significant and indirect effect of problem-solving coping abilities, which suggested its mediating effect on caregiving competence of stroke caregivers. Conclusions: Findings suggest that incorporating a strength-oriented psychoeducational programme into the existing stroke rehabilitation protocol can foster a healthy transition to caregiving among family members of stroke survivors.

Access source material through DOI

The Effect of a Brief Cognitive Behavioural Stress Management Programme on Mental Status, Coping with Stress Attitude and Caregiver Burden While Caring for Schizophrenic Patients

This experimental study was carried out using a pre-test/post-test control group model to evaluate the effect of a "Brief Cognitive Behavioural Stress Management Programme" (BCBSMP) on mental status, coping with stress attitude, and caregiver burden while caring for patients with schizophrenia. A total of 61 caregivers who provided care for schizophrenia patients at a community mental health centre were included in the study. Caregivers were matched according to gender and scale scores and were assigned to either the study or the control group. Before and after the programme, caregivers in both groups were given the "Demografic Data Form", "Zarit Caregiver Burden Scale", "Coping Attitude Evaluation Scale", "Stress Indicators Scale", and the "General Health Survey-28". Caregivers in the study group were taken to a BCSMP one session per week (each session lasted 120min) for seven weeks. We determined that the stress indicators, the risk of developing a psychological disorder, and caregiver burden decreased and skills related to both the problem-oriented and emotion-oriented aspects of stress increased in the study group after the programme.

Access source material through DOI

Randomized controlled trial of family-based education for patients with heart failure and their carers

Aim. The aim of this study was to evaluate a heart failure education programme developed for patients and carers in Thailand. Background. Heart failure is major health problem. This is the first trial of a family-based education programme for heart failure patients and carers residing in rural Thailand. Design. Randomized controlled trial. Methods. One hundred patient-carer dyads attending cardiac clinics in southern Thailand from April 2014 - March 2015 were randomized to usual care (n = 50) or a family-based education programme (n = 50) comprising face-to-face counselling, a heart failure manual and DVD and telephone support. Assessments of heart failure knowledge, health-related quality of life, self-care behaviours and perceived control were conducted at baseline, three and six months. Results. Linear mixed-effects model revealed that patients and carers who received the education programme had higher knowledge scores at three and six months than those who received usual care. Among those who received the education programme, when compared with those who received usual care, patients had better self-care maintenance and confidence, and health-related quality of life scores at three and six months, and better self-care management scores at six months, whereas carers had higher perceived control scores at three months. Conclusion. Addressing a significant service gap in rural Thailand, this family-based heart failure programme improved patient knowledge, self-care behaviours and health-related quality of life and carer knowledge and perceived control. 

Access source material through DOI

A randomized controlled trial of a home-based training programme to decrease depression in family caregivers of persons with dementia

Aims. The aim of this study was to explore distinct trajectories of caregivers' depressive symptoms and the effects of a training programme on these trajectories over 18 months after the programme. Background. Overall effects of caregiver-training programmes on family caregivers' depressive symptoms have been reported, but few studies explored distinct courses of changes in caregivers' depressive symptoms and followed up intervention effects on these distinct courses. Design. Randomized clinical trial. Methods. Family caregivers (n = 116) were randomly assigned into experimental (n = 57) and control (n = 59) groups. The experimental group received the training programme with telephone consultation and the control group received written educational materials and social telephone follow-ups. Caregivers' depressive symptoms were assessed from June 2009 - March 2012 by selfcompleted questionnaires before, at 2 weeks and 3, 6, 12 and 18 months after the intervention. Groups of individual trajectories were distinguished using groupbased trajectory modelling. Results. Caregivers' depressive symptoms fell into three stable trajectories: nondepressed, mildly blue and depressed. After controlling for covariates, caregivers who received the caregiver-training programme were less likely than those who did not experience persistent depressive symptoms (b = -1.92, odds ratio = 0.15, P < 0.05). Conclusion. Depressive symptoms of family caregivers of persons with dementia were relatively stable and followed three distinct courses: non-depressed, mildly blue and depressed. Therefore, caregivers' depressive symptoms should be assessed as early as possible. Caregivers in the experimental group had a lower probability of persistent depressive symptoms than caregivers in the control group. Therefore, this training programme can be used by healthcare providers for persons with dementia and their caregivers. Trial registration number: NCT02667951. References

Access source material through DOI

Changes in Families' Caregiving Experiences through Involvement as Participants then Facilitators in a Family Peer-Education Program for Mental Disorders in Japan

A family peer-education program for mental disorders was developed in Japan, similar to existing programs in the United States and Hong Kong. Families that serve as facilitators in such programs may enhance their caregiving processes and, thereby, their well-being. This study's aim was to describe how families' caregiving experiences change, beginning with the onset of a family member's mental illness, through their involvement in a family group or peer-education program as participants then facilitators. Thus, this study was conducted in a family peer-education program for mental disorders in Japan. Group interviews were conducted with 27 facilitators from seven program sites about their experiences before, during, and after becoming facilitators. Interview data were coded and categorized into five stages of caregiving processes: (1) withdrawing and suppressing negative experiences with difficulty and regret (2) finding comfort through being listened to about negative experiences (3) supporting participants' sharing as facilitators (4) understanding and affirming oneself through repeated sharing of experiences and (5) finding value and social roles in one's experiences. The third, fourth, and fifth stages were experienced by the facilitators. The value that the facilitators placed on their caregiving experiences changed from negative to positive, which participants regarded as helpful and supportive. We conclude that serving as facilitators may improve families' caregiving processes.

Access source material through DOI

Psychosocial intervention for carers of people with dementia: What components are most effective and when? A systematic review of systematic reviews

Background: Psychosocial interventions for carers of people with dementia are increasingly recognized as playing an important role in dementia care. We aim to systematically review the evidence from existing systematic reviews of psychosocial interventions for informal carers of people with dementia. Methods: Thirty-one systematic reviews were identified; following quality appraisal, data from 13 reviews, rated as high or moderate quality, were extracted. Results: Well-designed, clearly structured multi-component interventions can help maintain the psychological health of carers of people with dementia and delay institutionalization of the latter. To be most effective, such interventions should include both an educational and a therapeutic component; delivery through a support group format may further enhance their effectiveness. Conclusions: Successful translation of evidence into practice in this area remains a challenge. Future research should focus on determining the most cost-effective means of delivering effective multi-component interventions in real-world settings; the cost-effective potential of technology-based interventions is considerable.

Access source material through DOI

An evaluation of involving family caregivers in the self-care of heart failure patients on hospital readmission: Randomised controlled trial (the FAMILY study)

Background: The prevalence of heart failure is increasing in Lebanon but to date there is no systematic evaluation of a disease management intervention. Objective: The aim of this study was to evaluate the effect of involving family caregivers in the self-care of patients with heart failure on the risk of hospital readmission. Design: A multi-site, block randomised controlled trial. Settings The study was conducted over a 13-month period in three tertiary medical centres in Beirut and Mount Lebanon, Lebanon. Participants: Adult patients presenting for an exacerbation of heart failure to one of the study centres were included. Patients with limited life expectancy or physical functionality, planned cardiac bypass or valve replacement surgery, living alone or in nursing homes, or aged less than 18 years were excluded. Methods: Patients allocated to the intervention group and their family caregivers were provided with a comprehensive, culturally appropriate, educational session on self-care maintenance and symptom management along with self-care resources. The usual care group received the self-care resources only. Follow-up phone calls were conducted 30 days following discharge by a research assistant blinded to treatment assignment. The primary outcome was hospital readmission and the secondary outcomes were self-care, quality of life, major vascular events and healthcare utilization. Results: The final sample included 256 patients hospitalized for heart failure randomised into control (130 patients) and intervention (126 patients) groups. The mean age was 67 (SD = 8) years, and the majority (55%) were male. Readmission at 30 days was significantly lower in the intervention group compared to the control group (n = 10, 9% vs. n = 20, 19% respectively, OR = 0.40, 95% CI = 0.02, 0.10, p = 0.02). Self-care scores improved in both groups at 30 days, with a significantly larger improvement in the intervention group than the control group in the maintenance and confidence sub-scales, but not in the self-care management sub-scale. No differences were seen in quality of life scores or emergency department presentations between the groups. More patients in the control group than in the intervention group visited health care facilities (n = 24, 23% vs. n = 12, 11% respectively, OR = 0.39, 95% CI = 0.18, 0.83, p = 0.01). Conclusion: The trial results confirmed the potential of the family-centred self-care educational intervention under evaluation to reduce the risk of readmission in Lebanese patients suffering from exacerbated heart failure. Further research is needed to validate these findings with longer periods of follow-up and to identify the intervention components and intensity required to induce sustained benefits on patients' self-care management and quality of life.

Access source material through DOI

"Family matters": A systematic review of the evidence for family psychoeducation for major depressive disorder

The first aim of this systematic review was to evaluate the evidence for family psychoeducation (FPE) interventions for major depressive disorder (MDD). A second aim was to compare the efficacy of different modes of delivering face-to-face FPE interventions. Ten studies (based on nine distinct samples) were identified comprising four single-family studies, four multifamily studies, one single versus multifamily comparative study, and one peer-led, mixed-diagnosis study. Seven studies measured patient functioning and six reported positive outcomes. Six studies measured carer's well-being and four reported positive outcomes. Results provide preliminary evidence that FPE leads to improved outcomes for patient functioning and family-carer's well-being for persons with depression. The implications for future development and delivery ofFPE interventions for MDD are discussed.

Access source material through DOI