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“I’m just trying to cope for both of us”: we summarize the latest research on family caregivers

Jordyn Sims Pierce, MS, CCC-SLP, ATP | Feb 20, 2020 | Traumatic brain injury, Stroke, Aphasia, Parkinson's, Alzheimer's, Learning disorders

Whether you are a family caregiver for an individual with Aphasia, a Traumatic brain injury, Alzheimer’s, Parkinson’s, developmental disabilities, or other conditions, you know that it’s not an easy road. What you might not know is that there’s some great research going on looking at exactly what resources are the most helpful. Read on to find out more about the research on challenges and supports for family caregivers.

Family caregivers experience challenges and gaps in support

In a recent collaboration between researchers at Boston College and George Mason University, Aimee Milliken and colleagues interviewed family caregivers who were supporting loved ones in participant-directed programs. A PD program allows the participant themselves a great deal of control over their programming, both in terms of budget and hiring, supervising, and even dismissing caregivers. This is a little different than the traditional Medicaid service delivery model where agency service providers make those decisions. Participants in PD programs can even hire family members and friends who are already providing care because they have the flexibility and choice to design a program that’s well suited to their individual needs.

Even in a carefully designed PD program, caregivers still experience challenges and gaps in support. So, Milliken and colleagues set out to figure out exactly what those challenges were, what types of support had helped, and the sources of gaps in support.

Data collection for the study

The research team conducted semi-structured interviews by phone. These interviews were then transcribed and coded to find recurrent words, phrases, and identified feelings, and inter-coder reliability measures were completed.

Researchers interviewed 54 caregivers from 13 different states, who cared for individuals with developmental, physical, and/or cognitive disabilities. Caregivers included parents, spouses, adult children, grandparents, and siblings.

What the research found

  • Complexity often is used in reference to medical complexity, but the caregivers pointed out that complexity is more about the day to day challenges and unpredictability, the need to constantly be “on”, rather than dealing with a feeding tube or a ventilator.
  • Transitions were noted to be particularly difficult, whether that was a caregiver managing their loved ones’ disease progression or a caregiver coordinating a child aging out of the school system.
  • Many caregivers noted that they spent a lot of time advocating for their loved one, and even advocating at the policy level – however, this did not dispel the feelings of isolation often caused by having so little time outside of caregiving.
  • Supports that were most helpful were consistency in hired caregivers that resulted from the PD program, along with the ability to flexibly schedule care.
  • Collaborative organizations, religion, humor, and respite were also found to be helpful to caregivers.
  • “Support brokers” (people whose job is to find support) were also found to be extremely helpful, particularly when they frequently and creatively provide suggestions, and then respond to need quickly.
  • But finding a good support broker was noted to be challenging, especially with frequent turnover.
  • Some caregivers found that standardized interventions, while well-intended, were not helpful for their specific, individualized needs.
  • Negotiating multiple systems was also particularly challenging, especially with the agency care which many participants receive before joining a PD program, with lots of roadblocks and hoops to jump through.

Conclusions

The authors of the research were excited to see the benefits of PD programs for patients as well as for family caregivers and highlighted the continued need for social workers to match self-identified participant and caregiver needs with appropriate supports. In short, this study drives home the need for individualized programming for people with disabilities and the benefits that type of programming offers to caregivers. Nevertheless, even in an ideal world, caregivers still encounter significant challenges and need their own individualized support systems to help along the way.

If you are a family caregiver, you are not alone

Check Facebook for support groups, look up your national association (like the National Aphasia Association), and reach out to others in your community, whether it’s your neighbor or the leader at your place of worship.

Reference

Milliken, A., Mahoney, E., Mahoney, K., Mignosa, K., Rodriguez, I., Cuchetti, C., & Inoue, M. (2018). “I’m just trying to cope for both of us”: Challenges and supports of family caregivers in participant-directed programs. Journal of Gerontology Social Work, 62(2): 149-171. doi:10.1080/01634372.2018.1475438.

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