Accessibility of Caregiver Education and Support Programs: Reaching Hard-to-Reach Caregivers

Faith-based organizations can support dementia caregivers in a post-pandemic world.

The present study investigated the effects of characteristics of caregivers and the caregiving situation on family caregivers’ physical/mental health, using the multiple regression analysis with the time-series and cross-sectional data from the 2015-2018 Behavioral Risk Factor Surveillance System (BRFSS). The regression results indicated that the caregiving role could increase the risk of developing physical/mental health problems. Importantly, this study revealed that the characteristics of caregivers and care recipients were significantly associated with caregivers’ physical/mental health outcomes. Especially the results showed that the caregiver support program was the most significant factor linked to caregivers’ physical/mental health. It pointed to the importance of caregiver education and support programs for family caregivers to cope with the stress from providing care or daily assistance. The results also pinpointed which area of support services for informal caregivers would be a priority to enhance. Thus, the public health policymakers should re-evaluate the current long-term care program to establish a more effective caregiving structure, especially caregiver education and support programs for family caregivers, to improve the informal caregivers’ quality of life. 

Introduction: Family caregivers play a key role in the care of stroke survivors post-discharge. Without a standard of practice for supporting caregivers, many experience negative health outcomes. Literature supports establishing system-level infrastructure to provide education and support to family caregivers. However, the implementation of such programs has yet to be actualized. Objective: This study examined factors that influence the implementation of caregiver programs into the Ontario Stroke System from the perspectives of healthcare professionals Methods: Health care professionals providing stroke care in acute, rehabilitation and community care settings were invited to participate in the study by their Regional Education Coordinators. Health care professionals who were interested in participating in the study contacted the first author to set up the interview. Semi-structured interviews were conducted with participants. Interviews were audiotaped, professionally transcribed and reviewed for accuracy. Transcripts were coded, data was analyzed using a constant comparison approach and themes were identified. Results: A total of nineteen health care professionals participated in this study (7 acute, 5 rehab, 6 community, 1 private). Interviews lasted between 28 and 74 minutes. Data analysis identified five themes: 1) It is important for key stakeholders to understand the value of caregiver education and support programs; 2) Caregiver education and support requires dedicated resources; 3) Delineate ownership and responsibility for program implementation; 4) Provide training to health care professionals regarding caregiver needs and program materials to obtain buy-in and facilitate implementation; and 5) Establish a clear identity for the program and promote awareness of the program to potential implementers and users. Conclusions: This is the first study to identify factors that influence the implementation of family caregiver education and support programs from the perspectives of health care professionals involved in providing stroke care. Addressing these factors will enable the health care system to establish such programs, ensuring family caregivers receive the support they need.

Caring for Caregivers During COVID-19.

The purpose of this chapter is to describe effective methods for conducting ­evaluation research about caregiver education and support programs. We considered a different focus, reviewing, and evaluating the existing literature. However, a large and growing body of literature already exists about the effectiveness of caregiver education and support programs and it seemed to us that another review would be redundant. The literature is summarized in numerous excellent reviews that have highlighted what is known about the effectiveness of caregiver education and support programs and what remains to be accomplished. In fact, so many review studies have been completed since the first review by Toseland and Rossiter (1989) two decades ago, here we list only some of the reviews since 2000 (see, for example, Acton & Kang, 2001; Brodaty, Green, & Koschera, 2003; Cooke, McNally, Mulligan, Harrison, & Newman, 2001; Coon, Gallagher-Thompson, & Thompson, 2003; Farran, 2001; Gallagher-Thompson & Coon, 2007; Gallagher-Thompson et al., 2000; Harding & Higginson, 2003; Kennet, Burgio, & Schulz, 2000; Pinquart & Sorensen, 2006; Pusey & Richards, 2001; Schulz, 2000; Schulz et al., 2002; Selwood, Johnston, Katona, Lyketsos, & Livingston, 2007; Sorensen, Pinquart, & Duberstein, 2002; Thompson et al., 2007; Thompson, 2000; Toseland, Smith, & McCallion, 2001; Toseland, 2004; Yin, Zhou, & Bashford, 2002).

This book is focused on the current and future directions of education and support programs in four areas: (1) professional practice, (2) education and training, (3) research, and (4) policy and advocacy. Caregiving and support for family caregivers have continued to take on increasing significance in the American society as baby boomers’ age and life expectancy increase. As the debate rages about what to do to contain the increasing cost of health care, the central importance of family caregiving remains unquestioned. This concluding chapter will consider the current state of education and support groups for family caregivers and make recommendations that will help improve practice in the future.

The sustainability of caregiver education and support program outcomes is ­arguably the most important and the least attended to of all program variables in education and support practice, research, education, policy and advocacy. Consumers, ­providers, and sponsors of programs want their investment in programs to pay off, in positive, enduring ways. Short-term outcomes are only beneficial if they can be sustained over time. How, over time, can caregivers sustain the immediate positive outcomes of education and support programs in order to achieve intermediate and long-term outcomes? This question is addressed in this chapter by presenting a framework for sustaining program outcomes and by describing six sustainability tests that should be addressed by all caregiver education and support programs. The chapter concludes with a discussion of current and future trends that affect the sustainability of caregiver education and support programs.

Behavioral and psychological symptoms of dementia (BPSD) are associated with distress among caregivers of persons with dementia (PWD), but less is known about how relationship quality may buffer this association. This study examines the association between daily BPSD and daily perceived distress among family caregivers and the moderating role of relationship quality. Data were from 173 family caregivers of PWD from the Daily Stress and Health study. Relationship quality was assessed at the baseline interview; then on each of the 8 following consecutive days, caregivers reported frequency of daily BPSD (six domains) and their respective distress (calculated as daily distress sum and daily distress mean scores) through daily evening phone interviews at home. A 2-level multilevel model approach was employed to differentiate within-person (WP) and between-person (BP) effects. Greater daily BPSD occurrence was associated with higher daily distress (sum and mean scores) at WP and BP levels. However, relationship quality moderated the association between daily BPSD occurrence and daily distress sum scores at both WP and BP levels. Caregivers who reported better relationship quality with the PWD had lower levels of daily distress sum scores in response to daily BPSD occurrence, compared to their counterparts with poorer relationship quality. This study revealed that relationship quality attenuated the effect of daily BPSD occurrence on caregivers' distress. Future dementia caregiver education and support programs should consider building relationship quality into the personalized program design to improve caregiver mental health and well-being.

This chapter analyzes the utilization patterns of caregiver education and support programs with an emphasis on psychoeducational support groups and respite. An overview of the issues, definitions, conceptual frameworks, and evidence from research and current practice is provided. The structure of utilization patterns reviewed in this chapter includes (1) who attends education and support group programs, (2) what specific interventions are used, (3) implications of attendance at these programs, and (4) their beneficial outcomes. Studies reviewed in this chapter include those that focus on utilization patterns as well as outcome studies that examine utilization. Some of the later include studies of service use such as health-care utilization and cost outcomes. This chapter also discusses the status of educational and supportive interventions for caregivers in the future along with their attendant research, practice, policy, and advocacy implications. Families increasingly are caring for frail older adults with the assistance of community-based education and supportive programs. As more baby boomers enter retirement and become chronically ill over the next several decades, the incidence and prevalence of frail older persons needing supportive educational services will increase (National Alliance for Caregiving-NAC, AARP, & Metlife, 2009; NAC & AARP, 2005).

With governments worldwide reducing their involvement in the provision of institutional long-term elder care, community-based family caregivers (FCs) have become a key element in policies aimed at improving the quality of healthcare systems and maintaining their financial sustainability. This paper uses data from focus groups with FCs providing care to older adults to describe their approaches to and priorities for achieving care quality and sustainability as they work with formal health and social care systems. It describes FCs' views on information and communications technology (ICT) as potential supports for achieving these care quality and sustainability goals. We held 10 focus groups from May 2017 to August 2018 and recruited 25 FCs through a mix of convenience and snowball sampling strategies. We employed an inductive approach and used qualitative thematic content analysis methods to examine and interpret the resulting data. We used NVIVO 12 software for data analysis. Quality of care - as delivered by both FCs themselves, and formal health and social care systems - was a major preoccupation for our participants. They saw communications quality as a key aspect of the broader concept of care quality. Our data analysis produced a typology of communications quality from the FC perspective. Analysis of our data also revealed ICT development opportunities and available products in key areas. Our findings suggest that the formal care system providers could be more caregiver-oriented in their communications by engaging FCs in the decision-making process and allowing them to express their own concerns and goals. The implication of our findings for those seeking to develop policies and ICT products in support of FCs is that these should focus on human relationships and seek to expand facilitative communications.

Supporting Family Caregivers

One in 16 adults in British Columbia is a caregiver for a close friend or family member with a long term illness or disability. As such, it is not surprising that the government has begun to recognize the valuable role which caregivers play in the health care system. Accordingly, a 10-week support and education program for family caregivers was developed and implemented in seven diverse communities throughout British Columbia. An outcome evaluation indicated that the program was of value to participants. Results and anecdotal examples from interviews with caregivers, responses on a Caregiver Survey, focus group interviews, and facilitator journals are reported. Many of the program benefits are thought to be sustainable over time. Caution needs to be exercised in expecting already overworked caregivers to form self-sustaining support groups.

Family caregivers are a significant unpaid labour force that provides at least 70% of all care to seniors in the community. It was estimated in 2009 that the formal Canadian healthcare system would have to spend $25 billion annually to replace the contributions of family caregivers. More recent estimates have placed the value of family caregiver labour as high as $66.5 billion. While a wide range of public and private services are generally available to support family caregivers, many potential clients have difficulty both gaining access, and navigating those services once they have gained access. In this sense, they experience a highly fragmented ‘system’ of social support provision. As the population of older adults living in the community grows, and with it the demand for family caregivers’ provided support, policy attention has become increasingly focused on integration as a solution to the fragmentation challenge. The family caregiver support sector was singled out by a Special Senate Committee in 2009 as particularly likely to benefit from integration. Integration, the committee found, would allow the sectors to better address the needs of community-dwelling older adults with chronic health conditions, improve the financial sustainability of the formal healthcare system, and make necessary support services more accessible. Beyond the specifics of family caregiving, policy conversations and major reforms around the world have similarly focused on the need for increased integration of care, both in health and social services. Recognizing that integrating fragmented social and healthcare systems is a wicked problem generally, and a particularly urgent matter for the family caregiver support services (FCSS[1]) ‘system,’ the School of Public Policy (SPP) organized a day-long event drawing stakeholders together. The event originated in the FCSS community’s own desire to better understand and accomplish integration. As a facilitated discussion, it was designed as a space for participants to move away from talking about integration, and towards making both it, and the concept of a ‘system’ of care, real. In organizing the event and in line with a well-developed scholarly literature, we framed the problem of fragmentation as a ‘structural’ issue caused by, among other factors, divergent mandates, competitive funding models, disjointed assessment processes, and a lack of co-ordinated transition. Similar to other researchers, we saw the solution to fragmentation as integration through the lens of organizational structures, joint services, shared assessments, and coordinated planning. However, when we presented these concepts to the FCSS community, they initially connected with them, but quickly diverged away from the structural recommendations and instead generated their own initiatives through conversations and relationship building. We found that the act of bringing service providers together to share experiences, learn about each other, and develop their knowledge of services is the foundation upon which the various structural elements are built. The structural interventions are not the pathway to real integration, because they cannot be undertaken without a number of preconditions in place. Trust, consensus, and collaborative relationships are the necessary preconditions to integration, in whatever form it may take. In other words, an unsiloed system does not emerge from structural reforms, but rather from trusting relationships, consensus, and the resources and space for collaboration. The event provided participants with the opportunity to set agreed-upon goals for the sector to work on together. The collaborative space that FCSS community members envisioned during the event, along with the ambitious work packages they prioritized for action inside that space, were practical, implementable visions of integration as an activity emerging from a community working together. [1] The acronym FCSS is also commonly used in Alberta's social support community for Family and Community Support Services, which is a unique 80/20 funding partnership between the Government of Alberta and participating municipalities or Metis Settlements.

BackgroundCaregivers of people with dementia faces difficulties while constantly caring for their loved ones. Providing support programs should consider for promoting their experience of caregiving, quality of care, and will lead to delay institutionalization of dementia people. Implementing onsite support programs meets obstacles during the Covid‐19 pandemic, internet‐based interventions could be considered as a potential alternative.MethodsThis is a pre‐post pilot intervention study for primary family caregivers of community‐dwelling people with dementia. The 8‐week intervention program was delivered to the participants using ZOOM meetings software. This program consisted of 8 modules (one for each week): 1) reflecting on my caregiving journey, 2) understanding about dementia as a caregiver, 3) taking care of myself, 4) managing stress, 5) communicating with others, 6) learning how to take care of dementia people, 7) pleasant daily life, and 8) planning my caregiving journey. To assess the effects of the program, five caregiver’s outcomes were measured: Positive Aspects of Caregiving, (PAC), Caregiving Self‐Efficacy Scale (CgSES), Perceived Stress Scale (PSS), Health Risk Behaviors (HRB), and satisfaction.Results20 caregivers participated and 18 fully completed the pilot program. The participants have the mean age is 70.6, and 3.5 years playing the role of a family caregiver. The study findings found that the program significantly improved the PAC (P = .001), PSS (P = .027), and three sub‐domains of HRB: physical health (P < .000), mental health (P = .048), and leisure activities (P = .023). Whereas, though scores of the CgSES, and three remaining sub‐domains of HRB: care difficulty, building relationships, and getting help from others were better at the posttest compared with the pretest, these changes were not statistically significant. The participants scored 4.72 (maximum is 5) for their satisfaction with the program.ConclusionThis intervention program successfully improved quality of life and experience of the family caregivers related to their caregiving. Such online programs are a feasible solution in delivering supports to a huge subject anywhere while still mandated social distancing in this unpredictable Covid‐19 pandemic. Therefore, expanding this pilot should be considered.

Truth that Matters