September 2017: Krieger T, Feron F & Dorant E. (2017) Developing a complex intervention program for informal caregivers of stroke survivors: The Caregivers’ Guide. Scandinavian Journal of Caring Sciences, 31(1), 146-156. DOI 10.1111/scs.12344
Background: Stroke affects the entire family system. Failure to meet the needs of caregivers leads to physical and mental overburdening. Stroke caregivers may benefit from professional support. The literature reviews have shown that there is still no clarity concerning the most appropriate set-up of a support programme. In Germany, there is no stroke caregiver support programme that operates throughout the course of rehabilitation.
Aim: The aim was to develop a complex intervention programme for stroke caregivers in North-Rhine Westphalia, Germany.
Methods: A naturalistic enquiry approach, using a mixed-methods design, was applied. Within one overarching qualitative study, three separate, explorative, inductive, qualitative substudies were conducted: (i) seven explorative interviews with experienced stroke caregivers, (ii) six semi-structured interviews with professionals working within stroke rehabilitation and (iii) seventeen participant observations with focus on professional–caregiver interactions. Regional stroke units, rehabilitation centres, outpatient services and the home environment of caregivers were included. By means of a four-step qualitative content analysis, all three data sets were coded, categorised and subsequently condensed into subthemes, clustered into main themes, and finally translated into ‘Conceptual Building Blocks’ of the programme.
Results: The need for a personalised, holistic and multicomponent caregiver support programme emerged from all three substudies. Fourteen themes were condensed from the subthemes. Caregivers should be approached directly after stroke using outreach counselling. Support should be provided by a specially trained focal person across the entire patient’s rehabilitation trajectory. The newly developed support programme consists of five flexible ‘Conceptual Building Blocks’: Content, Human Resources, Personalised Approach, Timing and Setting.
Conclusion: Through a qualitative mixed-methods design, an in-depth contextual understanding of stroke caregiver needs within the rehabilitative support system was reached. This allowed the development of a context tailored comprehensive caregiver support programme consisting of five ‘Conceptual Building Blocks’.
Humble Opinion: My thanks to these researchers and the new knowledge they have generated about the impact of stroke on caregivers which will guide the development of a Caregivers Guide. It will be interesting to view the eventual package that this group develop. However, this study, or actually, a series of 3 sub-studies, is the exploratory phase of a much larger project which will aim to support informal caregivers across the entire continuum of care. As one of the quotes states: “Caregivers should receive long-term support from the beginning through to the end”. The authors are clearly reporting this as a work-in-progress, but if the eventual program assists informal caregivers to cope with the demands of their caregiver responsibilities, then surely this is wise allocation of resources. If caregivers are coping, then it is much less likely the survivor will need to be readmitted to a health or residential care facility.
This article is worth reading because it provides health professionals with a unique insight into the impact of stroke on informal caregivers. The quotes throughout the article are worthwhile reading in and of themselves. Its too easy to assume that we understand what the families and carers are going through, but how can we possibly know what its like? What is not surprising is that “all participants agreed that a caregiver support programme, offering help across the whole stroke rehabilitation trajectory, is required”, and that “active involvement of caregivers in decision-making.. would be helpful”. As I said to the group in Sydney, if I experienced a stroke, the person who would be my most loyal and committed support would be “my man”. He knows me the best, he is highly likely to be my “informal caregiver” if that was required, and he has the most to gain and loose by the eventual outcome. Of course we should be involving family and carers and of course we should be supporting them in that involvement.
As always, this is just my humble opinion. Its important to read it for yourself if you want to gain a better understanding of the experiences of informal caregivers of stroke survivors.
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