This study examined informal caregivers' attitudes towards respite care. Three distinct categories of caregivers were identified: (1) those that need and ask for respite care; (2) those that need but do not ask for respite care; and (3) those that do not need respite care. While respite care has been shown to be an effective mechanism for alleviating caregiver burden, not all caregivers seek or need respite care. This study finds that decision makers should target respite care services to informal caregivers in the first two categories.

Background: A substantial proportion of informal caregivers experience considerable burden and strain from care giving. Respite care - a term used for different types of interventions aimed at providing support and relief to informal caregivers- has been demonstrated to be an effective mechanism for alleviating caregiver burden. However, not all caregivers seek respite care and relatively little is known about what makes caregivers do so. This study examines informal caregivers' attitudes towards respite care.

Methods: This study analyzed 29 interviews and questionnaires of informal caregivers during three openhouse support groups at Informal Care Support Centres in the Netherlands. Informal caregivers were asked to rank-order 39 statements pertaining to motivation for providing informal care; physical, psychological, practical, financial, relational and social obstacles; supporting capacity; need for support; experienced support; and likelihood and barriers to utilizing respite care. A questionnaire regarding characteristics of the caregiver, the care recipient, the duration of informal care provision (in months) and self-perceived strain (self-rated burden) resulting from their care giving situation was also completed by all respondents.

Findings: The study revealed three distinct categories of caregivers: (1) those that need and ask for respite care; (2) those that need but do not ask for respite care; and (3) those that do not need respite care. Informal caregivers in the first two categories experienced substantial burden while those in the third received sufficient support and were deemed to be managing well. Caregivers in the second and third groups derived feelings of satisfaction from care giving. Those in the first two groups would, at times, prefer someone else do the care giving while those in the third group would prefer to care give themselves. The first group felt misunderstood and underappreciated by health and welfare organizations and faced difficulties accessing respite care. Decision makers in charge of respite care programs should avoid targeting caregivers that do not need respite care and instead target caregivers in the first two groups.

Conclusions: This study was based on a small sample of caregivers that presented themselves at an Informal Care Support Centre. Since these individuals were likely more strained than the average caregiver (who may not attend an Informal Care Support Centre), the sample is not necessarily representative of the general population of informal caregivers. Nevertheless, the study revealed some very important findings from a policy perspective. Findings suggest that there are three distinct categories of informal caregivers (those that need and seek it; those that need it but do not seek it; and those that do not need it) and it is important to identify which category should be targeted for respite care in order to maximize the use of limited health care resources and meet caregiver needs. The findings may help policy makers tailor respite care provision to ensure those informal caregivers that need respite care the most actually use it.

Reference: van Exel J, de Graaf G, Brouwer W. "Care for a break? An investigation of informal caregivers' attitudes toward respite care using Q-methodology." Health Policy 2007; 83: 332-342.

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