title: Developing a complex intervention programme for informal caregivers of stroke survivors: The Caregivers' Guide.
abstract: 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.
  
  
  OBJECTIVE
  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.
  
  
  CONCLUSIONS
  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'.
authors.affiliation: Institute for Health Research and Social Psychiatry, Catholic University of Applied Sciences North-Rhine Westphalia, Aachen, Germany.
authors.forename: Theresia
authors.initials: T
authors.lastname: Krieger
authors.affiliation: Department of Social Medicine, Faculty of Health Medicine and Life Sciences, Maastricht University, Maastricht, The Netherlands.
authors.forename: Frans
authors.initials: F
authors.lastname: Feron
authors.affiliation: Department of Social Medicine, Faculty of Health Medicine and Life Sciences, Maastricht University, Maastricht, The Netherlands.
authors.forename: Elisabeth
authors.initials: E
authors.lastname: Dorant
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000193:education* / Q000523:psychology*; D005260:Female; D005858:Germany; D006701:Home Nursing / Q000523:psychology*; D006801:Humans; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D012944:Social Support; D000071939:Stroke Rehabilitation / Q000379:methods*; D017741:Survivors / Q000523:psychology*
keywords: concept development; informal caregiver; interview; mixed-methods; observation; stroke; support programme