Author(s) Participant description (n, sex, age) Time since stroke at 1st Other interviews Country Qualitative methodology 13 Rittman et al., 2007 N=125 M=123 F=2 Age 40-93 1-6 months None USA Mixed methods: computer assisted thematic analysis for qualitative component 14 Robison et al., 2009 N=19 M=11 F=8 Age 53-85 7-39 days post discharge (median 16 days) 12 months post stroke England Framework analysis 15 Rochette et al., 2007 N=5 M=1 F=4 Age 61-83 3-4 weeks 3 and 6 months post stroke Canada methods: qualitative component based on phenomenology 16 et al., 2012a N=31 M=17 F=14 Age 37-94 “At baseline” for 23 participants. Unclear when took place 3, 6, 9 and 12 months with 23 participants. Single interview with 8 participants Australia Iterative methodology Analysis: An inductive thematic approach using modified grounded theory 17 White et al., 2012b N=22 M=10 F=12 Age 50-94 “At baseline” for 16. Unclear when took place 3, 6, 9 and 12 months with 16 participants. Single interview with 6 participants Australia Iterative methodology Analysis: An inductive thematic approach using modified grounded theory 18 Wood et al., 2010 N=10 M=6 F=4 Age 31-79 2 weeks, 3, 6 and 12 months post stroke Canada Symbolic interactionism Grounded theory-inductive approach Age reported as mean standard deviation IQR= Interquartile range
Two respondents discussed how the fear of recurrent stroke affected their recovery. “I need to gain the confidence to engage again with the world without the fear of having another stroke” “Having 'survived' the stroke I live in fear of a second stroke and am gradually accepting the diminution of my faculties and the 'new' me” Facilitators of recovery The majority of respondents (91%) took the opportunity to describe what helped their recovery most since returning to live in the community after their stroke. Themes that emerged from these responses include family support, stroke support groups, personal attributes, health professionals, exercise and being at home. Many of these themes have been discussed in detail in previous sections. As described, 80 respondents mentioned the support of their spouse, family or friends. Thirty-seven respondents detailed health professionals or rehabilitation services. Thirty people discussed stroke support groups or organisations. Thirty-two people discussed personal attributes that had helped recovery after their stroke. Nine people mentioned “determination”, seven cited a positive attitude while five discussed “motivation”. Similar thoughts were expressed by several other participants who valued their own “get up and go”, willpower, “stubborn personality”, “pride”, and desire to “get back into action”. “Said to myself "I'm not going to lie in bed - gonna get up and do things” Participants also felt that personal coping strategies, having a balanced approach, working hard with therapy, and having goals had helped them. “What helped me was I used to set different every week e.g. walking a bit longer. Increase my tasks e.g. housework. Do a little bit every day” Personal history, for example being single or having a background working in healthcare were seen by some as facilitators to recovery. Thirteen people felt that “being at home” in their own environment had helped their recovery. It facilitated “getting back to as normal a life as possible”. Eight respondents discussed different forms of exercise including walking, swimming, and those prescribed by their physiotherapist. It was seen as important to get “out and about” and get back to valued activities including driving and work. “I have maintained a regular programme of exercise, air, worthwhile activities and diet”
Findings in the context of studies As in the systematic review published in this report, respondents to the national survey perceived the primary effects of stroke to be barriers to community re-integration. Physical deficits, balance and fatigue were cited as the main reasons for curtailment of physical leisure activities. Fatigue and impairment of communication, memory, concentration, vision and physical ability were seen as barriers to returning to work. Reasons for not returning to driving included visual impairment, hemianopia and seizures. Social interaction was affected by aphasia, dysarthria, hearing impairment, fatigue, concentration difficulties and depression. Although problems with mobility, arm function and falling were frequently reported, satisfaction with of treatment received for these physical problems appeared to be higher than for cognitive problems. This reflects the findings of the UK Stroke Survivor Needs Survey. Our results suggest that people experienced high levels of fatigue, emotional, memory and concentration problems after their strokes and many did not feel they received the help that they needed. Associations were found as expected among our sample between physical problems, and referral to community physiotherapy and occupational therapy (OT). Interestingly referral to community OT was not associated with any cognitive or perceptual problems (memory, fatigue, concentration, sight), for which OTs can provide assessment and management strategies. This may reflect a greater focus on physical problems by professionals or it may point to difficulties with treatment of cognitive problems. Emotional challenges emerged from both the systematic review and national survey as significant barriers to community re-integration. Many participants reported depression and anxiety and felt they had not been warned about these symptoms. In contrast positive emotions, including determination and perseverance were seen by respondents as facilitators to recovery. This is supported by findings from the systematic review. Other surveys have demonstrated varying prevalence of emotional problems among stroke survivors. However, in those who report emotional problems there are high levels of dissatisfaction with help and support received across studies. Community psychological services were received by only 17 of our respondents, with 5 of these people paying privately for counselling. The Irish Clinical Stroke Guidelines recommend that stroke survivors and their caregivers should have their individual psychosocial needs reviewed on a regular basis. They suggest that clinical psychologists and social workers provide counselling and support to address issues including adjustment, impact on relationships, loss and coping. Families and spouses of stroke survivors were reported to provide high levels of support, for which respondents expressed gratitude. Significant effects on
A1.1: Detailed quality assessment of included studies Authors CASP Questionnaire 1 2 3 4 5 6 7 8 9 10 Alaszewski, et al., 2007 Yes Yes Yes Yes Yes Unclear Yes Yes Yes Barnsley et al., 2012 Yes Yes Yes Yes Yes Unclear Yes Yes Yes Clear Burton et al., 2000 Yes Yes Yes Yes* Unclear Yes Yes Yes Clear Carlsson et al., 2009 Yes Yes Yes Yes Yes Yes Yes Yes Yes Clear Dickson et al., 2008 Yes Yes Yes Yes Yes Unclear Yes Yes Yes Clear Ellis-Hill et al., 2009 Yes Yes Unclear Yes Unclear Unclear Yes Yes Yes Clear **** Erikson et al., 2010a Yes Yes Yes Yes Yes Unclear Yes Yes Yes Clear Erikson et al., 2010b Yes Yes Yes Yes Yes Unclear Yes Yes Yes Clear Gustafsson and Bootle 2013 Yes Yes Unclear† Yes Yes Unclear Yes Yes Yes Clear Jones et al., 2008 Yes Yes Yes Yes Yes* Unclear Yes Yes Clear Kubina et al., 2013 Yes Yes Yes Yes Yes* Unclear Yes Yes O'Sullivan and Chard., 2010 Yes Yes Yes Yes Yes* Yes Yes Yes Yes Clear Rittman et al., 2007 Yes Yes Unclear † Yes Unclear Unclear Yes Unclear Yes Clear Robison et al., 2009 Yes Yes Unclear † Yes Unclear* Unclear Yes Yes Clear Rochette et al., 2007 Yes Yes Yes Yes Yes* Unclear Yes Yes Yes†† Clear et al., 2012a Yes Yes Unclear † Yes Yes Unclear Yes Yes Yes Clear White et al., 2012b Yes Yes Unclear † Yes Yes Unclear Yes Yes Clear Wood et al., 2010 Yes Yes Yes Yes Yes Yes Yes Yes Yes Clear * ** ††
Social Factors Sense of Belonging versus Perceived Stigmatisation “A special mentioned by the respondents concerning their interaction with others was that their symptoms were in part hidden or difficult for others to see and understand”(Carlsson et al.);“resistant because bus drivers and other passengers did not understand their disabilities”(Barnsley et al.); “Participants also expressed feelings of social stigma”(Rittman et al.). “Some participants felt they were now treated differently and experienced discomfort at being accorded sympathy”(Dickson et al.); “Interactions with strangers evoked a particularly strong emotional reaction”(Dickson et al.); “participants who appeared to have recovered but had on-going limitations due to fatigue and experienced stigmatization from the broader community”(White et al. a); “doing something with someone that matters supported the participants’ sense of belonging and, thus, integration into social worlds”(Erikson et al. a);“Belonging was characterized as feeling part of a group and valuing engagement in its activities. The result was motivation to continue to take part in the group’s activities”(Kubina et al.); “participants’ accounts also highlight the importance of flexibility on the part of significant others in the social context of the activity”(Robison et al.); “church was identified as a major source of social interactions”(Rittman et al.); “Those participants who felt that work colleagues or managers were not supportive and did not recognize and support them, found return to work difficult” (Alaszewski et al.); “Over the year of rehabilitation, the participants felt an easing into belonging that was supported by others both at home and at the workplace”(Erikson et al. a);“the importance of flexibility in relation to working hours and workload and the merits of being able to arrange a phased return, factors, which typically rely on the willingness and cooperation of others”(Robison et al.).