Care for a Break? Informal Caregivers’ Attitudes Toward Respite Care

Summary of the Article:

This study, conducted by Job van Exel, Gjalt de Graaf, and Werner Brouwer and published in Health Policy in 2007, addresses the growing importance of informal care within the Dutch health care system and the significant burden often experienced by caregivers. The authors highlight that while respite care is recognized as an effective intervention to alleviate caregiver burden and promote sustainable caregiving, its effectiveness is contingent on appropriate design tailored to caregivers’ specific needs and desires.

Objective: The primary objective of the study was to investigate informal caregivers’ attitudes toward respite care. This was crucial given the increasing number of burdened caregivers and the need for targeted support programs.

Methodology: The researchers employed a Q-methodological study, a method well-suited for systematically studying subjectivity, viewpoints, beliefs, and attitudes.

• Participants: Interviews were conducted with 33 informal caregivers attending open-house support groups at Informal Care Support Centres (ICSCs) in Rotterdam, The Netherlands, in late 2004. A total of 29 Q-sorts were deemed suitable for analysis.
• Q-Set: Informal caregivers were asked to rank-order 39 statements related to motivations for caregiving, supporting capacity, various obstacles (physical, psychological, practical, financial, relational, social), subjective burden, need for support, experienced support, and propensity/impediments to using respite care.
• Data Analysis: Individual Q-sorts were analyzed using factor analysis with a varimax rotation to reveal common viewpoints among caregivers. Respondents also provided written explanations of their Q-sorts and completed a questionnaire about caregiver and care recipient characteristics, as well as objective and subjective burden.

Key Findings (Results): The analysis revealed three distinct groups (factors) of informal caregivers with different attitudes toward respite care:

1. Factor 1: Informal caregivers who need and ask for respite care.
   • These caregivers experience substantial burden, feel socially isolated, and would welcome someone else taking over their caregiving tasks.
   • They report a lack of appreciation and support from health and welfare organizations and ICSCs.
   • They desire practical assistance, information, and opportunities for respite (e.g., in-home or day-care, support groups).
   • They are less likely to see caregiving as enjoyable or their duty, and do not necessarily feel they are the most appropriate person for the task.
2. Factor 2: Informal caregivers who need but won’t ask for respite care.
   • These caregivers are in a difficult position, experiencing a great deal of stress while also deriving satisfaction from caregiving.
   • Crucially, they indicate a desire to hand over tasks but face resistance from the care recipient, who prefers to be cared for by them. This makes asking for assistance problematic.
   • They value feelings of control and, despite often having their tasks well-organized, find it difficult to set boundaries.
   • They tend to feel that their social circle leaves caregiving entirely to them, yet paradoxically, they feel appreciated by health care organizations.
3. Factor 3: Informal caregivers who do not need respite care.
   • These caregivers appear to have a well-balanced caregiving situation, experiencing less strain and enjoying the caregiving process.
   • They often see caregiving as their duty and derive considerable satisfaction from it.
   • They report strong support from their social network, appreciate concern from others, and are comfortable asking for help when needed.
   • While they may encounter financial and practical problems, they generally manage their tasks effectively. They are aware of what ICSCs can offer but may feel hampered by application procedures.

Conclusions and Discussion: The study concludes that respite care programs should specifically target caregivers in the first two groups.

• For Factor 1 caregivers, efforts should focus on improving communication and recognition by health and welfare organizations, ensuring demand-oriented support is accessible.
• For Factor 2 caregivers, attention needs to be directed to both the caregiver and the care recipient. Both parties need to be convinced that respite care is in their mutual interest to make the caregiving task manageable in the long run. Initiatives like “acquaintance days” with care providers or facilities may help overcome initial resistance.
• The findings emphasize that the need for respite does not always translate into actual demand due to various impeding factors, such as care recipient resistance or mismatches between demand and supply. Understanding these different attitudes is vital for policymakers and health care professionals to provide effective and tailored support.

Context: why respite care matters

Van Exel, de Graaf and Brouwer studied informal caregivers in the Netherlands, where about 6% of the population, roughly one million people, spend more than eight hours a week caring for a loved one, a number equal to the entire Dutch healthcare workforce and six times the number of home care professionals. Heavy caregiving burden is linked to physical, emotional, social and financial problems, to institutionalisation of the care recipient and even to higher morbidity and mortality among older caregivers. Respite care is meant to relieve this burden, yet many caregivers do not use it.

How the study was conducted

In late 2004 the authors ran Q-sorts during three open-house support groups at Informal Care Support Centres in Rotterdam. Caregivers ranked 39 statements covering motivation for caregiving, capacity, physical, psychological, practical, financial, relational and social obstacles, subjective burden, need for and experience of support, and willingness or reluctance to use respite care. They explained their sorts in writing and completed a questionnaire that included the Caregiver Strain Index and the Self-Rated Burden scale. The sorts were analysed with PQMethod using factor analysis and varimax rotation.

Three groups of caregivers

The analysis revealed three viewpoints. Caregivers who need and ask for respite care experience substantial burden and feel misunderstood and undervalued by health and welfare organisations, and they struggle to obtain respite. Caregivers who need but will not ask for respite also carry a heavy burden, but their wish for respite is ambivalent, partly because the person they care for resists it. Caregivers who do not need respite feel well supported and manage well. The first two groups had longer caregiving histories, more often cared for someone with psychological problems and reported higher subjective burden.

Implications for policy

Respite programmes should target the first two groups. For the second group, efforts must address both the caregiver and the care recipient, persuading them that respite is in their shared interest because it keeps caregiving manageable in the long run. More broadly, the study shows how Q-methodology can segment a population by viewpoint, which helps design services that match the needs of different groups rather than a single average user.

APA Reference:

van Exel, J., de Graaf, G., & Brouwer, W. (2007). Care for a break? An investigation of informal caregivers’ attitudes toward respite care using Q-methodology. Health Policy, 83(3), 332–342. doi:10.1016/j.healthpol.2007.02.002