“I’m just trying to cope for both of us”: Challenges and supports of family caregivers in participant-directed programs

Abstract

Recently, national attention has focused on the needs of family caregivers providing complex chronic care, noting the necessity to better understand the scope of challenges they encounter. Although a robust body of literature exists about the scope of family caregiving, little is known specifically about the experiences and perspectives of family caregivers who support participant directed (PD) participants, particularly across the caregiving trajectory. Therefore, the aim of this qualitative descriptive study was to describe what family caregivers of individuals with developmental disabilities, physical disabilities, aging, or chronic health conditions identify as the challenges they experience as complex, and their perceptions of the effectiveness and gaps in family support resources in PD. Semi-structured interviews were audio-recorded with a purposive sample of caregivers. Transcribed interviews were analyzed using conventional content analysis. Fifty-four caregivers of individuals with a range of disabilities participated (age 34-78, M 59.9 ± 8.8; male 19%; spouse 17%, parent 61%). Six categories emerged from the analysis: contextualizing complexity, complexity in transitions, coping with complexity: advocacy & isolation, supportive support, unsupportive support, and systems challenges. Caregivers emphasized the interplay between unpredictability, transitions, and complexity and the interaction between the person receiving support, the caregiver's own situation, and the environment. Findings highlight the need, and provide a guide, for family assessment and for tailoring interventions matched to the profiles and self-identified challenges of families living with disability. Social workers can learn what families see as complex and what support broker behaviors families find helpful, and which not.

Users Of Veteran-Directed Care And Other Purchased Care Have Similar Hospital Use And Costs Over Time

“…17 Improved caregiver satisfaction and emotional well-being have been reported in other participant-directed programs. 16,18…”

“…8,15 Family caregivers value the choice and flexibility afforded by participant-directed programs. 16 They report reduced stress associated with using paid caregivers through VDC, because of the control they have over hiring decisions and the ability to work with a consistent and reliable paid caregiver over an extended timeframe. 17 Family caregivers in VDC value scheduling caregiving help when it is needed, rather than according to an agency's schedule.…”

An Ecocultural Perspective on Learning Disability: Evaluation of Familial and Cultural Factors and Presentation of an Integrated Model

“…Studies indicated that caregiving support have a significant role for primary caregivers of children with LD [23]. School and educational workload make it difficult for caregivers to find enough time to meet their basic needs (e.g., visiting a doctor), which in turn associated with caregivers' feelings of burnout [52,62,63]. For example, full-time working parents experiencing a range of home-, work-and child-related difficulties have reported more concerns about their physical and psychological health and less interest in social activities [52].…”

“…Since mothers are usually the primary caregiver in all over the world [64], mothers who are not receiving adequate caregiving support can be regarded as a risky group in terms of psychological and physical health. Social policies providing services for fulfilling mothers' physical and social needs can also support their participation in social life [63]. Researchers should elaborate on what kind of resources mothers of children with LD need or use in case of a lack of caregiving support in future studies.…”

Supporting Family Care: A Systematic App Review

“…Another widely addressed caregiving domain is the support in organizational matters, which is very important since caregivers often nd it di cult to interact with the health care system [27]. However, such apps contained mainly calendar, reminder, or documentation features and rarely addressed issues with caregiving arrangements and related bureaucracy.…”