The impact of respite care from the perspectives and experiences of people with amyotrophic lateral sclerosis and their care partners: A qualitative study

Study Aim/Purpose:   The purpose of this study was to explore the experiences of persons with amyotrophic lateral sclerosis (ALS) and their care partners with caregiving and respite care, as well as the perceived effects of in-home respite care.

Summary of Methods:  Thirty-one dyads of people with ALS and their partners who provide care to them were divided into a treatment and comparison group, with the treatment group receiving 16 hours of in-home respite care per month over a six-month period.

Semi-structured interviews were conducted with both members of the dyad, using a brief interview protocol designed to gain insight into their experiences with regard to the challenges of having ALS and caregiving, perceptions of respite care, and the respite care experience. The interviews were transcribed and coded for thematic analysis. People with ALS and caregivers were also asked demographic questions and standard quantitative measures to measure the physical and cognitive functioning of people with ALS. Caregivers were also asked a series of questions to assess worry and anxiety, depression, quality of life, support satisfaction and interactions, closeness of the patient-caregiver relationship, and caregiver burden. These quantitative measures were analyzed using descriptive statistical analyses. A total of 102 baseline and follow-up interviews were included in the qualitative analysis.

Summary of Results:  The mean age of the study participants with ALS was 66 years and the mean age of care partners was 64 years. The majority of people with ALS identified as male and White. Interviews revealed several common challenges of caregiving including stress, helplessness, fear, sadness, and exhaustion, and caregivers not having enough time for themselves. Respondents also highlighted the challenges of ALS and caregiving for their relationship with each other.

In the baseline interviews, about one-third of interviewees expressed hesitancy about using respite during the baseline interviews. Interviews with the treatment group after a six-month period indicated very positive responses to respite. Specifically, they reported improved relationship quality, more time for the care partner to pursue personal commitments or take a break, and improved emotional well-being for both people with ALS and their caregiving partners. At the same time, nearly one-third of the treatment group expressed continued concerns relating to loss of privacy and one in five expressed concerns with the lack of staff consistency. Additionally, the majority indicated that the 16 hours of respite per month was not enough at the time or that they anticipated needing more respite assistance in the future given the rapid progression of ALS.

Study Limitations (as cited by authors):  There was a 32% attrition rate in study participants between the baseline and second interview at six months. This was largely attributed to the death of people with ALS or the increased burden of research participation. As a result, the quantitative data collected was not sufficiently powered to detect differences within or between the comparison and treatment groups.

The authors also pointed out another potential bias in interview responses due to the fact that some of the treatment group had previous experience using respite care and their baseline and follow-up responses may have been based at least in part on that past experience. In addition, the authors acknowledged that placement in the treatment group was the choice of the families and was not random. This may have created a positive bias in the comments about their respite care experience. With more than three-quarters of the study sample being White, the authors also recognized and expressed concern about how this lack of ethnic diversity limits generalizability of the results.

Authors’ Discussion/Conclusions:  Overall, the authors concluded that the perceived value of respite care was far greater than the expressed challenges and concerns. With regard to lessons learned for practice, the authors recommended that respite programs focus on providing consistent staffing for each family. They also recommended that respect programs engage families and respect their preferences in the care provided. With regard to improving respite program quality, availability, and uptake, they recommended that the ALS community be engaged in the design and delivery of respite care and related evaluation research.