Potential caregivers for homebound elderly: More numerous than supposed?

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Original Research

Potential caregivers for homebound elderly: More numerous than supposed?

J Fam Pract. 2009 July;58(7):E1-E6

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References

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Analysis

Two of this study’s authors (JC, JM) audiotaped, transcribed, and independently coded the interviews, and compared them for agreement. We used an editing style analysis.¹⁸ Thematic categories and subcategories became apparent during coding, and we modified them as the interviewing proceeded. We examined and conceptually organized the categories, using the qualitative research software program NUD*IST 4 (Qualitative Solutions and Research Pty Ltd, Victoria, Australia) to facilitate data management and analysis.

A consensus approach

At least 2 investigators participated in each step of the analysis (eg, reading and coding of transcripts; identification, modification, conceptual organization of categories; and selection of themes for presentation). The team made all decisions by consensus.

Human subjects research approval

A Johns Hopkins University School of Medicine Institutional Review Board approved this study, and we obtained written informed consent from all study participants.

Results

FAST TRACK

Consider explaining to patients and families that the pool of potential caregivers may be larger than they realize.

We interviewed 22 caregivers (TABLE 1). The number of caregivers per patient ranged from 0 to 3 (20 patients altogether). Most patients had 1 caregiver, but several had 2 or 3. Sixteen interviews involved 1 caregiver, and 3 involved caregiver teams. The average age of the caregivers was 59.3 years, and they had known the patients for an average of 37.4 years. Fourteen of the 22 caregivers (63.6%) were female (a finding similar to results from a Kaiser Family Foundation study in 1998 of 1002 caregivers, in which 64% of the 511 primary caregivers were female).¹⁹ Nine of the 22 (40.9%) participants were unrelated to the patient. Caregivers were primarily unpaid relatives or friends (77.3%), but compensated individuals were also included.

Three major themes emerged from analysis of the interview transcripts: (1) positive and negative experiences of caregiving, (2) caregiver motivation, and (3) caregiver transformation. Representative quotes are used to illustrate the themes presented. Specific examples of these themes are shown in TABLE 2.

TABLE 1
Characteristics of the caregivers we interviewed

Sex
Female	14/22 (63.6%)
Average age
59.3 years
Ethnicity
Caucasian	19/22 (86.4%)
African American	3/22 (13.6%)
Average length of relationship with patient
37.4 years
Relationship to patient
Related	13/22 (59.1%)
1 wife 4 sons 4 daughters 2 grandchildren 1 daughter-in-law 1 grandson-in-law
Unrelated	9/22 (40.9%)
4 friends (1 paid) 3 paid professional caregivers 1 paid nonprofessional caregiver 1 distant nonblood relative

TABLE 2
Common caregiver themes that emerged during interviews

Positive aspects of caregiving Feeling needed Seeing patient improve Younger generations learning from patient Patient advocacy Friendship and companionship Financial payment	Negative aspects of caregiving Confining Limitation of activity and travel Stress Financial cost Emotional burden Balancing needs of family and patient Extensive planning
Caregiver motivations Duty Love and friendship Divine purpose Reciprocity	Caregiver transformation Ability to better cope with dying View of caregiving role improved Life planning changed–“day-by-day” approach adopted

Positive and negative aspects of caregiving

Caregivers described very different experiences of their roles—some only negative, some only positive, and others both positive and negative. Accounts of 6 of the 22 interviewees were essentially value-neutral.

Negative aspects of caregiving. Seven of 22 caregivers reported only negative feelings toward their role, including feeling burdened.

A 62-year-old retired son described how caring for his mother adversely affected his life:

Yeah, I sleep here. I don’t even go to my bed. I haven’t been to bed in over 3 years, because…if I don’t go down as soon as she rings the bell, she can’t hold her water.… I used to go out to Pennsylvania and go up in the battlefield there. I used to go down Skyline Drive, places like that. I can’t do that anymore.

FAST TRACK

“I figure this is our purpose…to take care of someone or help someone,” one caregiver said.

Positive aspects of caregiving. Four caregivers addressed only positive aspects of caregiving.

A 71-year-old retired secretary who was asked if she had encountered any difficulties in caring for her friend said:

I haven’t had any. We’ve become very close friends and her friendship means a lot…I don’t think there’s any problems with going up there…Because I call her before I go to the grocery store to make sure she’s got everything on the list and then I go and just take it up to her and do from there.

Mixed experiences with caregiving. Five of our participants discussed both positive and negative aspects of caregiving; 4 of these 5 lived with the patient.

A 47-year-old machine technician who cared for his grandmother described the benefits his 16-year-old son was receiving from the caregiving arrangement:

It’s been a plus for him to have his great-grandmother living here. I think he enjoys her company, the little stories that go along and plus they always had a good relationship when he was a small child…I would hope he would realize the importance of family and I feel we’re losing that in our society, we’re losing our family. Seems like everybody is moving away and not being associated as close as probably we once were, and you know you realize that sometimes people need a little bit of help and not to be as selfish as you would want to be and maybe learn from that that we all kind of need one another at one time and not to be so independent, like it seems like our society has gone.