Care for a break? An investigation of informal caregivers’ attitudes toward respite care using Q-methodology
Introduction
Over the last decades, informal care has become an integral and indispensable part of the Dutch health care system. Increasing budget constraints and demand for care have led to waiting lists (at the front door of the health care system) and an increasing popularity of early and cost-saving discharge policies (at the back door). Moreover, patients appear to have a clear preference for in-home and informal care. At the moment, therefore, about 6% of the Dutch population, or one million people, spend more than eight hours a week supporting a loved one in need of care, and 75% of them will do so for a period in excess of three months [1]. To put it into context, this number of informal caregivers equals the total number of people employed in Dutch health care, and is six times the number of home care professionals [2]. Given the growing stream of international literature on informal care, the Dutch case does not seem exceptional but rather exemplary for many countries.
Ongoing budget concerns, policies promoting outpatient and community care and the ageing of the population in western countries will probably further increase the demand for informal care in the future (e.g. [3], [4], [5], [6]). At the same time, though, it is uncertain whether the number of people who are able and willing to provide informal care will match increasing demand. As a result of demographic and socio-cultural trends like ageing of the population, individualisation, female labour participation and increasing residential mobility leading to regional dispersion of families, one may expect supply of informal care to decrease rather than increase.
Given these trends, it is relevant to consider that becoming a caregiver can have a profound impact on all dimensions of daily life [5], [7]. A large part of informal caregivers experience substantial burden from care giving and have problems in maintaining their care giving role in a responsible and sustainable way, especially in combination with other activities and role obligations [1], [8], [9], [10]. Care-related strain has been shown to be associated with familial relationship, type of living arrangement, and the motivation for taking up the care giving responsibility (e.g. [11], [12]). A too straining care task may result in physical, emotional, social and financial problems, is associated with out-of-home placement, and has even been demonstrated to be an independent risk factor for morbidity and mortality amongst elderly caregivers [7], [9], [13], [14]. And in the future, the burden for the remaining and ageing population of informal caregivers can be expected to increase further. Fortunately, evidence of an increasing number of substantially burdened caregivers in need of support has generated attention from policy makers for the position of informal caregivers and some budget for support [e.g., in The Netherlands (www.minvws.nl) and the UK (www.minvws.nl)].
The increasing attention for the position of informal caregivers is important because, indeed, many caregivers are in need of support and relief, especially those that experience substantial burden [1], [7], [8], [10], [14], [15]. Respite care is a generic term for different types of interventions aimed at providing support and relief to informal caregivers by (temporarily) reducing the burden of the care giving task and restoring or raising the caregiver's ability to cope. Respite care takes many forms, for instance: support groups, information, education and counselling by professionals; special holiday arrangements, day-care programs, and in-home respite care. These types of support programs for informal caregivers have been demonstrated to be an effective instrument to alleviate caregiver burden, to prevent adverse (health) effects from care giving, and so to increase the ability and willingness of informal caregivers to provide (or maintain providing) informal care as well as to take up other activities and roles obligations [9], [16], [17], [18], [19], [20], [21], [22]. The (sustained) effectiveness of interventions with caregivers however, differs per study; an appropriate design is pivotal for developing effective and efficient respite care projects [9], [23]. In order to achieve that, it is important to have knowledge of the differences in need for respite. This makes it possible to focus and tailor provision in such a way that the likelihood that informal caregivers will actually use respite care is increased and, as a bonus, may promote the (cost-) effectiveness of funds deployed to respite care projects [8], [23].
In this paper we present the findings of a Q-methodological study we conducted to investigate informal caregivers’ attitudes toward respite care. Section 2 elaborates on factors associated with caregiver need and attitude toward respite. Section 3 discusses methods and data, followed by results (Section 4) and discussion (Section 5).
Section snippets
Respite care
Many caregivers indicate they are in need of support and relief. This was demonstrated to be associated with the subjective burden from care giving, in particular with experiencing substantial burden [24], [25]. Strained caregivers express to need or desire a break from their care giving responsibilities once in a while, for instance in the form of a short-break, a weekly (part of the) day off, or the opportunity to go an organised holiday for patients and their caregivers. Subjective burden
Methods and data
To uncover caregivers’ attitudes toward respite, we conducted a Q-methodological study among informal caregivers that presented themselves at an ICSC in the city of Rotterdam, The Netherlands.
Results
A total of 33 informal caregivers attending a support group meeting agreed to participate and rank-ordered the 39 statements; 29 Q-sorts were suitable for analysis; four respondents did not finish their Q-sort because it was cognitively too demanding in a group interview setting.
Table 1 presents some basic characteristics of the study population, and shows that a large variety of care giving situations is represented in the sample. Analysis of the 29 individual Q-sorts revealed three factors.6
Conclusions and discussion
Public awareness is growing that informal caregivers should be supported in their valuable effort to provide care to people in their social environment. As discussed in the introduction to this paper, respite care can be an effective way to alleviate the burden of informal care giving and to reduce the adverse (health) effects substantial burden may bring about. In this way, respite care may also promote a more responsible and sustainable use of informal care, decrease the pressure on the
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