Understanding the Needs of Unpaid Caregivers

PURPOSE: The purpose of this study was to identify the needs of unpaid caregivers. Caregiving is a unique role that can affect mental, emotional, and physical health. Occupational therapy practitioners are situated to develop interventions that meet the comprehensive needs of caregivers. However, to develop a program for caregivers, practitioners must first understand their needs as they are identified by caregivers themselves.

METHOD: We used an exploratory research design. Four focus group participants (three women and one man) were recruited through snowball sampling from other studies following which they had agreed to be recontacted and through convenience sampling with flyers in the community. Participants were aged 18 and older, provided care for an adult, had been providing care for ≥6 mo, and scored ≥4 on the short Mini-Mental Status Exam, and neither the participant nor the care recipient had a life expectancy of <1 yr.

The 1-hr focus group was led by a trained research assistant who was also an occupational therapist using a focus group guide to direct the discussion. Participants were provided with questions to fill out before the focus group that included demographic information, information about the caregiver role, questions regarding pain, and questions regarding potential future interventional needs. All data were transcribed verbatim, transcripts were reviewed, and related themes emerged.

RESULTS: Participants identified caring for a husband, partner, mother, and father. Two care recipients had a primary diagnosis of dementia, one Parkinson’s disease, and one stroke. Three related themes emerged: balance of care, balance of emotions, and balance of independence. Regarding the first theme, participants spoke about finding an appropriate balance between providing care to another person and caring for themselves. One person stated, “It isn’t obvious to many people that it doesn’t take much of a reward for yourself to feel better, but you need to take that reward as soon as you can after a tough event or day, because that builds a toll on you, and you don’t know about it until you just finally kind of crack.”

The second identified theme was that although they had a strong desire to assist their loved ones, they saw a potential emotional and psychological toll of providing care. A participant said, “You know, some people see in a way it is an honor to take care of the person, but it has to be done in a way that protects you as much as them.” The third theme discussed was the need for balance in terms of allowing the person they cared for to have independence but also providing aid as appropriate. One caregiver discussed this in terms of her loved one, “I want her to continue to have her independence, and I think it’s extremely important that you respect their boundaries. You know, we each have a little acre to farm, and sometimes I can help her with her little acre, but sometimes, you know, I can’t, and sometimes I don’t know where that boundary line is, actually.”

CONCLUSION: Participants in this study recognized the necessary balance between providing care and meeting their own self-care needs. Our qualitative data revealed that caregivers are open to interventions that provide strategies regarding how to assist with life balance and how to best meet the self-care needs of the caregiver and the care recipient.

IMPACT STATEMENT: People who provide care struggle between meeting the needs of care recipients and meeting their own needs. Occupational therapy practitioners must gather data from caregivers to design appropriate occupational therapy interventions to facilitate life balance for these clients.

References

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