Psychosocial well-being after stroke in Aotearoa New Zealand: a qualitative metasynthesis

Figures & data

Figure 1. Screening process.

Table 1. Summary of included papers.

Author	Research aim	Methodology	Participants	Setting	Findings in relation to understanding psychosocial well-being
Ahuja et al. [42]	Identify and discuss the experiences, perceptions and challenges faced by those living with stroke, to provide health professionals with an insight into the journey to recovery following stroke	Methodology: Qualitative	N = 11 (1 F, 10 M)	Community	People described a journey to a “new me” after their stroke. This journey involved frustrations and challenges and was an ongoing process of learning about one’s limitations, developing coping strategies and adapting to new realities to work towards acceptance. Crucial aspects to recovery included a positive attitude, control over goal setting, adapting and adjusting to new limitations, and receiving support from family/community. When these factors were accepted into the process of their journey, it helped propel them towards their “new me” and allowed for improvements in wellbeing.
			Aged 49–72 years
			Time since stroke = not reported
		Data collection: Semi-structured interviews
		Data analysis: General Inductive Approach
Becker et al. [46]	Explore the perceptions of stroke survivors living in the southern region of the South Island of New Zealand with regards to their reintegration into their communities	Methodology: Qualitative	N = 8 (2 F, 6 M)	Community	Key factors that supported successful community reintegration included involvement in meaningful activities, and reduced reliance on others whilst maintaining or developing supportive, respectful, and caring social relationships. Re-establishing normality, whether that be returning to one’s ‘old’ normality, or finding a ‘new’ normality, along with finding purpose in life also promoted well-being.
			Aged 50–80 years
			Mean time since first stroke = 6.5 years
		Data collection: Semi-structured interviews
		Data analysis: General Inductive Approach
Boland et al. [82]	Identify the adaptive equipment (AE) that people typically use after a stroke and the outcomes achieved as a result, and to explore people’s experiences obtaining and using AE	Methodology: Grounded theory	Interviewees: N = 15	Community	Trusting, respectful relationships with therapists promoted AE use for people after stroke. AE that allowed for engagement in meaningful activities and community participation were reported to benefit aspects of psychosocial well-being.
			Aged 49–90 years
			Time since stroke = 18–24 months
		Data collection: Semi-structured interviews
		Data analysis: Coding and constant comparative methods of grounded theory
Bright et al. [43]	Explore how hope was experienced by people with aphasia following stroke during the post-acute period of rehabilitation, and to identify factors influencing the experience of hope	Methodology: Interpretive description	N = 5 (2 F, 3 M)	Community	Hope was experienced both through ‘simply having hope’ – a passive, constant sense of hope; and ‘actively hoping’ – an intermittent, future focused hope. Hope was considered essential by people with aphasia and could provide stability, and support them to think positively about the future.
			Aged 41–62 years
			Time since stroke = 2–5 months
		Data collection: Semi-structured interviews
		Data analysis: Multiple approaches including coding, thematic analysis, and narrative construction
Bright et al. [53]	Identify how people with aphasia experience hope 1 year after stroke and how hope may change in the year after stroke	Methodology: Interpretive description	N = 4 (2 F, 2 M)	Community	Early post-stroke hopes were recalibrated through an ongoing process of reflection on past progress, one’s current reality, and what a person desired for the future. People continued to hold an underlying broad hope for the future. Having a sense of progress, engaging in meaningful roles and activities, feeling socially supported, and having a sense of identity facilitated hope and helped people to develop a sense of a positive, desirable future.
			Aged 42–63 years
			Time since stroke = 14–18 months
		Data collection: Semi-structured interviews
		Data analysis: Content analysis
Brown et al. [55]	Explore patient experiences with goal setting in post-acute stroke rehabilitation to further understanding of its application to practice	Methodology: Qualitative	N = 10 (3 F, 7 M)	Community	Maintaining forward momentum was identified as vital to recovery and promoting well-being. This could be achieved in different ways. Some people found short term goals useful, others drew motivation from setting ambitious goals without necessarily needing to achieve them, while others simply needed to feel they were making progress. An individualised approach to engaging patients in goal setting is required to ensure that both the process of goal setting, and goals themselves are patient centred and meaningful.
			Aged 33–85 years
			Time since stroke = 3–7 months
		Data collection: Semi-structured interviews
		Data analysis: Thematic analysis
Dyall et al. [28]	Identify issues important to Māori stroke survivors, providing Māori-specific qualitative information to complement the quantitative results from the 2002/03 Auckland Regional Community Stroke (ARCOS) study	Methodology: Qualitative	N = 15	Community	Māori cultural identity, and the support of whānau were identified as important facilitators to recovery post stroke and promoted well-being.
			Stroke survivors = 8 (4 F, 4 M)
		Data collection: Semi-structured interviews	Caregivers = 7 (6 F, 1 M)		People spoke of challenging experiences within health services that negatively impacted upon well-being, including care that was not culturally appropriate, a lack of clear and appropriate information, and whānau frequently being excluded from care. The experience of stroke had ripple effects, including both socially and financially, which impacted the well-being of the wider whānau.
			Females aged < 60 yrs
		Data analysis: Transcripts coded to predetermined schedule	Males aged > 60yrs
			Time since stroke = not reported
Hale et al. [52]	Describe the adaptation of the UK-developed Bridges stroke self-management programme (Bridges SMP) into a version relevant and acceptable to the NZ context	Methodology: Qualitative	N = 6 (3 F, 3 M)	Community	Connecting with others with a shared experience of stroke, being supported to set personally meaningful targets broken down into achievable steps, reflecting on progress made, working towards acceptance, and taking responsibility for rehabilitation were seen as important in recovery and life after stroke. These factors supported people to overcome feelings of isolation and loneliness, to connect with family, and provided encouragement and positivity for the future.
			Aged 46–68 years
			Time since stroke = 3–12 months
		Data collection: Semi-structured interviews
		Data analysis: General inductive approach
Kitt et al. [51]	Explore the perspectives on participation on group rehabilitation in the inpatient setting for people with moderate to severe stroke	Methodology: Qualitative descriptive	N = 6 (2 F, 4 M)	Inpatient	People expressed frustration and at times despair at the sense of loss experienced following stroke. Some people experienced a loss of identity, or of meaningful roles and activities post-stroke which negatively impacted upon well-being. Hope, support and encouragement was gained through connecting with others with a shared experience of stroke. Creating relationships with peers or therapists, and being seen and respected as an individual created a sense of belonging, and could improve confidence and engagement.
			Aged 76–93 years
			Time since stroke = < 3 months
		Data collection: Semi-structured interviews
		Data analysis: Conventional content analysis
McLellan et al. [47]	Describe and interpret the experiences of Māori with aphasia and their whānau to inform service delivery for this population	Methodology: Kaupapa Māori research and interpretive description	Stroke survivors N = 11 (7 F, 4 M)	Community	Stroke resulted in complex changes to the lives of those who had a stroke and their whānau, with ripple effects felt throughout the wider whānau. Cultural identity, engaging in meaningful roles, and the indivisible nature of the person with stroke and whānau were central to well-being. Whānau took responsibility for the well-being of the individual who had a stroke and were deeply involved in their physical and emotional care. Individuals and whānau actively managed recovery and life after stroke, choosing how best to respond to challenges faced.
			Aged 50–79 years
			Time since stroke = not reported
		Data collection: Semi-structured interviews	Whānau members N = 25
		Data analysis: Inductive thematic analysis
McLellan et al. [29]	Explore Māori experiences of aphasia therapy, with a view to ascertaining what makes a service culturally safe as well as “accessible to and culturally appropriate for” Māori with aphasia and their whānau	Methodology: Kaupapa Māori research and interpretive description	Stroke survivors N = 11 (7 F, 4 M)	Community	Having a good therapeutic relationship between person with stroke, whānau and clinician was vital to successful, valued therapy.
			Aged 50–79 years		People valued therapy that was respectful, tailored to the individual and their whānau and what was meaningful to them, and was communicated clearly and appropriately. Of central importance was the recognition of cultural identity and worldview, and the inclusion of whānau in the rehabilitation process. The use of culturally appropriate resources, and the delivery of services in an appropriate setting supported engagement in therapy.
			Time since stroke = not reported
		Data collection: Semi-structured interviews	Whānau members N = 25
		Data analysis: Inductive thematic analysis
Rotherham et al. [49]	Explore the benefits for adults with aphasia of all the groups they had chosen to participate in post-stroke, as perceived by the individuals with aphasia and their family members	Methodology:	Stroke survivors N = 10 (2 F, 8 M)	Community	Groups provided valued opportunities for social connection. Connecting with others who had a stroke, and in particular others with aphasia, provided people with a sense of belonging and assisted in overcoming feelings of isolation.
		Qualitative descriptive	Aged 51–83 years
			Time since stroke = 7 months − 4 years		Groups also boosted confidence, provided hope and encouragement, supported people to engage in meaningful roles within family and community, and to develop a positive post stroke identity.
		Data collection: Semi-structured interviews	Family members N = 6
		Data analysis: Qualitative content analysis
Rutherford et al. [50]	Explore challenges that are experienced at 6 months after stroke to inform the ongoing refinement of self management programmes	Methodology: Qualitative descriptive	N = 53 (27 F, 26 M)	Community	People highlighted the need for health professionals to recognise and acknowledge the impact of stroke on a person’s life, regardless of the severity of stroke. They highlighted the need to be supported to make sense of what had happened, in a way that was meaningful to them as an individual. To promote well-being and support people to manage post-stroke, services must be person-centred and timely, providing on-going services particularly following discharge from acute care.
			Aged 38–94 years
			Time since stroke = 6 months
		Data collection: Minimally structured interviews	Significant others N = 26
		Data analysis: Thematic analysis
Singh et al. [48]	Explore the unique culture and ethnicity specific experiences of Indian people living in New Zealand with stroke, focusing on self-management and facilitators and challenges to recovery	Methodology: Qualitative	N = 8 (4 F, 4 M)	Community	Working towards small milestones, being open to new experiences, persevering and adopting a positive attitude were strategies used by people to manage the challenges of life post-stroke. Support from both family and health services, social connectedness, engaging in meaningful roles and activities, and accepting and embracing the changes in oneself following stroke were factors that promoted recovery and facilitated well-being.
			Aged 28–76 years
			Time since stroke = 3 months to 18 years
		Data collection: Semi-structured interviews
		Data analysis: General Inductive Approach
Stretton et al. [45]	Explore what real-world walking means to people after stroke and how they think it could be better	Methodology: Interpretive description	N = 8 (4 F, 4 M)	Community	Walking provided a sense of freedom and independence for people with stroke as it allowed some control and choice over their situation. This sense of freedom could reduce negative emotions experienced following stroke. Seeing progress made in walking increased hope for progress in other areas of life, and led to improved confidence, enhanced motivation, positive emotions, and a sense of achievement. Social connections often underpinned progress made in walking, which in turn promoted increased social interactions, thus facilitating well-being.
			Aged 36–85 years
			Time since stroke = Ranged from < 6 months to >12 months
		Data collection: Semi-structured interviews
		Data analysis: Thematic analysis
Theadom et al. [44]	Explore people’s experiences over the first three years post-stroke and identify what helped or hindered recovery	Methodology: Qualitative description	N = 55 (29 F, 26 M)	Community	Adjusting to life post-stroke was an ongoing process. People reflected on their past, their present reality and what was important to them to establish a ‘new normal’. Being well supported, and engaging in meaningful activities facilitated this process. People described the need for health professionals to provide clear information about their stroke at a time when they were able to process this as important to facilitating adjustment. Services that recognise the psychological impacts of stroke and are more flexible and responsive to a person’s needs were recommended to support adjustment post-stroke; as was better support to navigate the health system.
			Median age 71 years
			Time since stroke =
		Data collection: Semi-structured interviews	48 interviewed at 6 months
			52 interviewed at 12 months
			47 interviewed at 24 months
		Data analysis: Coding and constant comparison	37 interviewed at 36 months
Timothy et al. [56]	Gain an in-depth understanding of embodiment for people after stroke while transitioning from the hospital to home	Methodology: Grounded theory	N = 7 (2 F, 5 M)	Community	People were in a constant state of flux between a sense that their body and self were one and feeling that their body was separate from themselves. Regaining control over one’s body, and aspects of life more generally, reflected a sense of wholeness, with participants associating bodily control with self-assurance and feelings of progress. Experiencing freedom of bodily movement and having freedom of choice also contributed to a sense of ‘wholeness’. Those with a strong self-identity did not appear to be as negatively impacted by changes in bodily ability compared with others. Knowledge of stroke, and of one’s post-stroke body, a positive attitude, and a supportive environment helped to ground and reassure people during life early post-stroke.
			Aged 66–89 years
			Time since stroke < 4 months
		Data collection: Semi-structured interviews
		Data analysis: Constant comparative method of grounded theory
Turner [54]	Understand stroke patients’ perspectives of hospital-related psychosocial and environmental factors contributing to post-stroke depression	Methodology: Grounded theory	N = 6 (4 F, 2 M)	Inpatient	Dependence on others and a lack of control contributed to feelings of disempowerment in people after stroke, as did feeling enclosed in the hospital environment, disconnected from the outside world. Feeling as though one must ‘fit in’ to the routines of the ward led to feelings of decreased self-value and self-esteem. People described feeling separation from loved ones due to a lack of privacy during visits. A lack of meaningful activity, particularly for women, contributed to low mood. Mitigating factors to depression included supported home visits and car outings, and cheerful staff who provided encouragement and listened to their needs.
			Aged over 65 years
			Time since stroke = Not stated
		Data collection: Interviews (one unstructured and one semi-structured per participant)
		Data analysis: Constant comparative method of grounded theory

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