Support groups

Virtually no researchers have investigated the effect of support groups on improving the wellbeing of caregivers (Visser-Meily et al., 2005b). In one study it was found that whilst involvement in a stroke club was said to provide some friendship and emotional support for caregivers, there were no significant differences on outcome measures of caregiver burden and emotional functioning compared to caregivers not involved in the stroke club (Printz-Feddersen, 1990). Given the association between social support and positive caregiver outcomes (e.g. Cumming et al., 2008), this is an avenue that merits further study.

Investigators of a small number of studies have reported positive intervention outcomes in some domains such as knowledge about stroke, caregiver emotional functioning, and stroke survivor functional status. There is also some evidence that stroke survivors and caregivers are satisfied with the support services and interventions accessed (e.g., Clarke & Black, 2005; Simon et al., 2008; van der Smagt-Duijnstee, Hamers, Abu-Saad & Zuidhof, 2001; Young et al., 2003), for example in terms of increasing instrumental daily functioning in stroke survivors via occupational therapy (Clarke & Black, 2005).

In summary, the majority of investigators evaluating interventions for caregivers and stroke survivors have found unpromising results, and a significant proportion of caregivers feel dissatisfied with the amount of preparation and lack of assessment of their competence before hospital discharge (Smith et al., 2004a). As previously stated, communication between caregiver and health professionals has also been cited as inadequate (Tyson & Turner, 2000). Information about stroke and access to appropriate community support services has also been insufficient, and discontent with the quality, quantity, and the timing of services that are received has been expressed (Eaves, 2002; Kerr & Smith, 2001; Smith et al., 2004a). More specifically, information

about the general nature, consequences and prognosis of stroke, and access to practical stroke support and home respite care, where the caregiver can abrogate their caregiving responsibility to someone else for a period of time, appear to be lacking (Greveson & James, 1991; Kerr & Smith, 2001; Mackenzie et al., 2007; McKevitt et al., 2004; Rodgers, Francis, Brittain & Robinson., 2007; Smith et al., 2004a; Simon & Kendrick, 2002; Wellwood, Dennis & Warlow, 1995). Even a large proportion of stroke health professionals in one study reported that they rarely provided information to stroke survivors and caregivers, and that when the information was provided, it was usually insufficient (Hoffman, McKenna, Herd & Wearing, 2007). Caregivers consequently report feeling unheard by health professionals, and experience isolation and abandonment post- discharge (Smith et al., 2004b).

Insufficient financial or emotional support has also been reported (Kerr & Smith, 2001). It has been argued that addressing the psychological and emotional needs of stroke survivors and their caregivers is necessary for other services (such as respite, rehabilitation services and information provision) to have a positive impact (Carnwath & Johnson, 1987; Han & Haley, 1999). Unfortunately, as stated earlier the provision of many services is based on the physical and cognitive functioning of the stroke survivor (Anderson et al., 1995; McCullagh et al., 2005), and so psychological support to help improve the emotional functioning and quality of life for caregivers is scarce (Simon et al., 2008). Additionally, most stroke survivors and caregivers suffering from depression and distress rarely access or seek any treatment (Hackett et al., 2008; Kotila et al.,1998; Young et al., 2003), demonstrating the need for health professionals to be more pro-active in promoting such participation in these services. When services are received, this is often only following the request and persistence of the caregiver (Brereton & Nolan, 2000; Smith et al., 2004b), and there is often a delay in the provision of services such as aids for the

home, leading to decreased stroke survivor independence and increased caregiver burden (Kerr & Smith, 2001).

So, it is clear that to date, there is inconsistent evidence regarding the efficacy of available services with investigators showing that stroke survivors and their caregivers exhibit both positive but predominantly negative perceptions and experiences (e.g. Lamb et al., 2008; Visser- Meily et al., 2005b). Furthermore, the factors that comprise effective interventions for caregivers, especially in relation to managing affective symptoms, remain elusive (Dennis et al., 1998; Forster & Young, 1996; Hackett & Anderson, 2006; Low et al., 1999; Parag et al., 2008). Therefore, before any of these types of premature recommendations can be implemented and assessed, gauging the lived experiences of caregivers, and more thoroughly addressing caregiver factors such as their needs, concerns, emotional functioning and HRQoL is required via qualitative research (White et al., 2004), and will assist in better understanding caregivers, improve discharge planning and service provision, and reduce their level of burden (Bugge et al., 1999; Dennis et al., 1998; Franzen-Dahlin et al., 2006; Han & Haley, 1999; Lui, Ross & Thompson, 2005; Parag et al., 2008; Scolte op Reimer et al., 1998). The necessity for this research has been highlighted several times in the existing caregiver literature (e.g. McCullagh et al., 2005; Visser-Meily et al., 2005b), and is one of the key priorities outlined by the NSF‟s clinical guidelines for stroke rehabilitation and recovery (NSF, 2005). Unfortunately, the qualitative research available is parsimonious; that is, information is only gathered from caregivers when exploring perceptions, needs and evaluations of support (Kerr & Smith, 2001). Hence, conducting qualitative research that uses the method of triangulation, which entails eliciting the same information from multiple sources, by also interviewing stroke survivors‟

views of their caregivers‟ experiences, would serve as a valuable contribution to the existing research base.

In addition, as previously discussed, the current body of evidence is still predominantly quantitative in nature, and the summarised criticisms concluded that:

 Most standardised measures fail to capture the multidimensional nature and complexity that comprises caregiver experiences and,

 Quantitative methods may also be biased towards only measuring particular dependent variables that relate to the author‟s pre-existing hypotheses and assumptions, thus potentially missing other important information about caregivers (Dowswell et al., 2000).