Sarah Northcott

Social support in people with chronic aphasia

Background & Aims : Stroke and aphasia can have a profound impact on peoples social activities, and family and social relationships. This study looked at patterns of social support in people with chronic aphasia following stroke. It examined the relationship between social support and quality of life, exploring which aspects of social support (social network versus perceived social support) were most associated with health-related quality of life (HRQL). Methods & Procedures : A cross-sectional interview-based survey study was conducted. A cluster-sampling framework was used to recruit participants with chronic aphasia following stroke (> 1 year) from three different sites in the south-east of England. Measures included the Stroke and Aphasia Quality of Life Scale-39 item version (SAQOL-39), the MOS Social Support Survey (SSS), and a social network questionnaire. Descriptive statistics, correlation, t -tests, and ANOVAs were used as appropriate. Outcomes & Results : The results of those able to self-report (83 out of 95 participants, 87%) are reported here. In terms of social networks, the mode of the size of network was 4. Size of network was associated with HRQL for women only. Most participants (71%) reported they had the same amount of contact with their children following the stroke, while 64% reported they saw their friends less. Those who had the same level of contact with their family as before the stroke had the highest HRQL scores; those who saw them either less or more than before the stroke had lower HRQL. In terms of perceived social support, the SSS scores were negatively skewed with a mean (SD) of 3.69 (.95), suggesting that participants felt overall well supported. Two types of support were significantly correlated with HRQL: social companionship and informational support. Clinical implications : Therapy services for people with aphasia could consider ways to enhance social companionship and informational support as this may positively impact on HRQL. Implications could include complementing and supporting existing social networks, and facilitating access to information and social participation.

Psychological distress after stroke and aphasia: the first six months

Objective: We explored the factors that predicted psychological distress in the first six months post stroke in a sample including people with aphasia. Design: Prospective longitudinal observational study. Setting and subjects: Participants with a first stroke from two acute stroke units were assessed while still in hospital (baseline) and at three and six months post stroke. Main measures: Distress was assessed with the General Health Questionnaire-12. Other measures included: NIH Stroke Scale, Barthel Index, Frenchay Aphasia Screening Test, Frenchay Activities Index, MOS Social Support Scale and social network indicators. Logistic regression was used to identify predictors of distress at each stage post stroke; and to determine what baseline factors predicted distress at six months. Results: Eighty-seven participants were able to self-report on measures used, of whom 32 (37%) had aphasia. 71 (82%) were seen at six months, including 11 (16%) with aphasia. Predictors of distress were: stroke severity at baseline; low social support at three months; and loneliness and low satisfaction with social network at six months. The baseline factors that predicted distress at six months were psychological distress, loneliness and low satisfaction with social network (Nagelkerke R2 = 0.49). Aphasia was not a predictor of distress at any time point. Yet, at three months post stroke 93% of those with aphasia experienced high distress, as opposed to 50% of those without aphasia (χ2 (1) = 8.61, P<0.01). Conclusions: Factors contributing to distress after stroke vary across time. Loneliness and low satisfaction with one’s social network are particularly important and contribute to long-term psychological distress.

Psychometric properties of the Stroke and Aphasia Quality of Life Scale (SAQOL-39) in a generic stroke population

Background: We previously developed the Stroke and Aphasia Quality of Life scale (SAQOL-39) and tested it with people with chronic aphasia. A scale allowing comparisons of quality of life between people with versus without aphasia post-stroke would be of value to clinicians. Objectives: To evaluate the psychometrics of the SAQOL-39 in a generic stroke sample. Should this process result in a generic-stroke version of the scale (SAQOL-39g), a further aim is to compare the latter and the SAQOL-39 as tested in chronic aphasia. Design and subjects: Repeated measures psychometric study, evaluating internal consistency, test—retest reliability, construct validity and responsiveness to change. People admitted to hospital with a first stroke were assessed two weeks, three months and six months post stroke. Measures: SAQOL-39, National Institutes of Health Stroke Scale, Barthel, Frenchay Aphasia Screening Test, General Health Questionnaire-12 and Frenchay Activities Index. Results: Of 126 eligible participants, 96 (76%) participated and 87 (69%) were able to self-report and are presented here. Testing the SAQOL-39 in generic stroke resulted in the SAQOL-39g, which has the same items as the SAQOL-39 but three domains: physical, psychosocial, communication. The SAQOL-39g showed good internal consistency (α = 0.95 overall score, 0.92—0.95 domains), test—retest reliability (interclass correlation (ICC) = 0.96 overall, 0.92—0.98 domains), convergent (r = 0.36—0.70 overall, 0.47—0.78 domains) and discriminant validity (r = 0.26 overall, 0.03—0.40 domains). It differentiated people by stroke severity and visual analogue scale (VAS)-defined quality of life. Moderate changes (d = 0.35—0.49; standardized response mean (SRM) = 0.29—0.53) from two weeks to six months supported responsiveness. Conclusions: The SAQOL-39g demonstrated good reliability, validity and responsiveness to change. It can be used to evaluate quality of life in people with and without aphasia post stroke.

A systematic review of the impact of stroke on social support and social networks: associated factors and patterns of change

Objective: Identify what factors are associated with functional social support and social network post stroke; explore stroke survivors’ perspectives on what changes occur and how they are perceived. Data sources: The following electronic databases were systematically searched up to May 2015: Academic Search Complete; CINAHL Plus; E-journals; Health Policy Reference Centre; MEDLINE; PsycARTICLES; PsycINFO; and SocINDEX. Review methods: PRISMA guidelines were followed in the conduct and reporting of this review. All included studies were critically appraised using the Critical Appraisal Skills Program tools. Meta-ethnographic techniques were used to integrate findings from the qualitative studies. Given the heterogeneous nature of the quantitative studies, data synthesis was narrative. Results: Seventy research reports met the eligibility criteria: 22 qualitative and 48 quantitative reporting on 4,816 stroke survivors. The qualitative studies described a contraction of the social network, with non-kin contact being vulnerable. Although family were more robust network members, significant strain was observed within the family unit. In the quantitative studies, poor functional social support was associated with depression (13/14 studies), reduced quality of life (6/6 studies) and worse physical recovery (2/2 studies). Reduced social network was associated with depression (7/8 studies), severity of disability (2/2 studies) and aphasia (2/2 studies). Although most indicators of social network reduced post stroke (for example, contact with friends, 5/5 studies), the perception of feeling supported remained relatively stable (4/4 studies). Conclusion: Following a stroke non-kin contact is vulnerable, strain is observed within the family unit, and poor social support is associated with depressive symptoms.

Aphasia blog talk: How does stroke and aphasia affect a person’s social relationships?

Background: Stroke and aphasia can negatively affect a person’s ability to maintain healthy social relationships, both within the family and also with friends and the wider network. To date, this has been explored predominantly through qualitative interviews and questionnaires. Blogs written by people with aphasia constitute a novel source of data, comprised of people’s own voices on issues that are of concern to them. Aims: To explore the impact of stroke and aphasia on a person’s relationships with family, friends and the wider network through analysing blogs written by people with aphasia. Methods & Procedures: Blog search engines were used to identify blogs sustained by a sole author who had aphasia following a stroke, and which reflected on their social network. The data were analysed qualitatively using framework analysis. Outcomes & Results: The systematic search resulted in 10 relevant blogs. Participants were aged between 26 and 69 years old, lived in the community, were at least 1 year post stroke and included six women and four men. Aphasia was a consistent thread running through the blogs affecting conversations with all parts of a person’s network and impacting on participants’ sense of self. They found it more difficult to take part in family activities and described higher degrees of dependence and changed family dynamics. Contact with friends was reduced, partly due to communication and physical difficulties. While some participants became motivated to become members of groups post stroke, contact with the wider network sometimes diminished, in part because of loss of work and community activities. An additional factor impacting on social relationships was other people’s positive or negative reaction towards the person with aphasia. Finally, the blogs reflected on the importance of support they had received, both from close family and also from the wider community. Conclusions: This study found that social relationships played a crucial role in people’s lives following a stroke and aphasia. Nonetheless, family relationships, friendships and social exchanges within the wider social network were all substantially affected. Exploring this area through online narratives offered a rich and highly authentic source of data. The findings suggest that clinicians should incorporate social approaches in rehabilitation and consider ways to foster the maintenance of social networks. The use of social media by people with aphasia should be further explored, both as a therapeutic outlet and also as a way for people with aphasia to feel connected to a wider community.

What Factors Predict Who Will Have a Strong Social Network Following a Stroke

PURPOSE Measures of social networks assess the number and nature of a persons social contacts, and strongly predict health outcomes. We explored how social networks change following a stroke and analyzed concurrent and baseline predictors of social networks 6 months poststroke. METHOD We conducted a prospective longitudinal observational study. Participants were assessed 2 weeks (baseline), 3 months, and 6 months poststroke. Measures comprised the Stroke Social Network Scale (Northcott & Hilari, 2013), Medical Outcomes Study Social Support Survey (Sherbourne & Stewart, 1991), National Institutes of Health Stroke Scale (Brott et al., 1989), Frenchay Aphasia Screening Test (Enderby, Wood, Wade, & Langton Hewer, 1987), Frenchay Activities Index (Wade, Legh-Smith, & Langton Hewer, 1985), and Barthel Index (Mahoney, Wood, & Barthel, 1958). Analyses of variance and standard multiple regression were used to analyze change and identify predictors. RESULTS Eighty-seven participants (37% with aphasia) were recruited; 71 (16% with aphasia) were followed up at 6 months. Social network scores declined poststroke (p = .001). Whereas the Children and Relatives factors remained stable, the Friends factor significantly weakened (p < .001). Concurrent predictors of social network at 6 months were perceived social support, ethnicity, aphasia, and extended activities of daily living (adjusted R2 = .42). There were 2 baseline predictors: premorbid social network and aphasia (adjusted R2 = .60). CONCLUSIONS Social networks declined poststroke. Aphasia was the only stroke-related factor measured at the time of the stroke that predicted social network 6 months later.

Aphasia blog talk: How does stroke and aphasia affect the carer and their relationship with the person with aphasia?

Background: Carers of stroke survivors with aphasia are at risk of experiencing negative bio-psychosocial consequences and reduced quality of life. So far, in aphasia studies, this has mainly been explored through qualitative interviews and questionnaires. Unsolicited first-person narratives in the form of blogs offer a novel and rich source of data to examine how stroke and aphasia affect the carer and their relationship with the person with aphasia. Aims: This study explored how carers of people with aphasia perceive their roles and responsibilities; it also examined the consequences of carrying out these carer roles and duties, in terms of both the carer’s own well-being and their relationship with the person with aphasia; furthermore, it investigated facilitative factors in their adaptation to the carer role. Methods & Procedures: Publically available blogs written by carers of aphasic stroke survivors, which included information on how stroke and aphasia affect the carer and their relationship with the person with aphasia, were analysed using the Framework Method. Outcomes & Results: The search resulted in nine carer blogs. The number of posts per blog ranged from 13 to 241. For blogs containing over 90 posts, the first and last 30 relevant posts were collected and analysed. New roles and extra responsibilities identified by participants included having to act as therapists, nurses, counsellors, and administrators and carrying out tasks usually assigned to the other person in the relationship. The extra tasks and duties impacted on the carers’ quality of life and their relationship with the person with aphasia in negative ways, such as leading to physical and mental exhaustion, health issues, feeling lonely, and resentful of their circumstances; however, participants also identified positive changes such as new closeness, new appreciation of life, and pride in achievements. A variety of strategies emerged from the data that helped carers adjust to their new roles. Strategies included positive reframing, allocating time to oneself, and seeking support from family and friends. The activity of blogging was also mentioned as having beneficial effects on the carers’ well-being. Conclusions: The study provides further evidence for the specific challenges faced by carers of people with stroke and aphasia; it thus confirms the importance of addressing carer related needs in intervention and considering psychosocial well-being for both the carer and the person with aphasia.

Stroke Social Network Scale: development and psychometric evaluation of a new patient-reported measure:

Objective: To describe the development and psychometric evaluation of a new patient-reported measure that assesses a person’s social network in the first six months post stroke. Although it is known that the social networks of those with stroke and aphasia are vulnerable to change, there is currently no social network scale that has been validated for this population. Design and setting: Repeated measures psychometric study, evaluating internal consistency, construct validity, and responsiveness to change of the Stroke Social Network Scale. Participants were interviewed two weeks, three months and six months following a first stroke. Measures: Stroke Social Network Scale; Medical Outcomes Studies (MOS) Social Support Survey; National Institute of Health Stroke Scale; Stroke and Aphasia Quality of Life Scale-39g; Frenchay Aphasia Screening Test. Results: 87 participants were recruited, of whom 71 were followed up at six months. Factor analysis was used with the Stroke Social Network Scale to derive five subdomains: satisfaction; children; relatives; friends; and groups, which explained 63% of variance. There was good evidence for the scale’s internal consistency (α = 0.85); acceptability; and convergent (r = 0.34; r = 0.53) and discriminant validity (r = −0.10; r = −0.19). It differentiated between those with high versus low perceived social support (p = 0.01). Moderate changes from two weeks to six months supported responsiveness (d = 0.32; standardised response mean (SRM) = 0.46), with the friends factor, as expected, showing more change than the children’s factor (friends factor: d = 0.46; SRM = 0.50; children’s factor: d = 0.06; SRM = 0.19). Conclusions: The Stroke Social Network Scale is a new measure that demonstrates good internal consistency, validity and responsiveness to change.

“Struggling to stay connected”: comparing the social relationships of healthy older people and people with stroke and aphasia

ABSTRACT Background: Having a stroke and aphasia can profoundly affect a person’s social relationships. Further, poor social support is associated with adverse post-stroke outcomes such as psychological distress, worse quality of life, and worse recovery. To date, no study has used complex measures of social network and perceived social support to compare stroke survivors with aphasia, without aphasia, and the general older population. A better understanding of which aspects of social support are most affected by stroke and aphasia may inform stroke services. Aims: To compare the social networks and perceived functional social support of people following a stroke, with and without aphasia, and healthy older adults. Methods & Procedures: Cross-sectional interview-based study. People with a first stroke were recruited from two acute stroke units and interviewed 6 months post onset. We recruited 60 stroke participants without aphasia, average age 69.8 (SD = 14.3), and 11 stroke participants with aphasia, average age 66.5 (SD = 13.7). One hundred and six healthy older adults were recruited via the community, average age 62.8 (SD = 9.5). All participants completed the Medical Outcomes Study Social Support Survey (SSS) and the Stroke Social Network Scale (SSNS). One-way independent groups ANOVAs were used to compare stroke participants with aphasia, stroke participants without aphasia, and healthy older adults. Outcomes & Results: After adjusting for multiple comparisons (p < .004), there was a significant difference on overall social network between the three groups (p < .001), with those with aphasia scoring significantly lower than healthy older adults (p < .001). The difference between healthy older adults and people with aphasia on the friends domain of the social network scale was also significant (p = .002). There was no significant difference between the three groups on overall perceived functional social support. Conclusions: People with aphasia have less diverse social networks than healthy older adults, with friendships particularly affected. Stroke services should monitor for social isolation, and consider ways to support people following a stroke in maintaining or establishing diverse social networks.

Does mode of administration affect health-related quality-of-life outcomes after stroke?

Abstract Telephone interviews and postal surveys may be a resource-efficient way of assessing health-related quality-of-life post-stroke, if they produce data equivalent to face-to-face interviews. This study explored whether telephone interviews and postal surveys of the Stroke and Aphasia Quality of Life Scale (SAQOL-39g) yielded similar results to face-to-face interviews. Participants included people with aphasia and comprised two groups: group one (n =22) were 3–6 months post-stroke; group two (n =26) were ≥1 year post-stroke. They completed either a face-to-face and a telephone interview or a face-to-face interview and a postal survey of the SAQOL-39g. Response rates were higher for group two (87%) than for group one (72–77%). There were no significant differences between respondents and non-respondents on demographics, co-morbidities, stroke severity, or communication impairment. Concordance between face-to-face and telephone administrations (.90–.98) was excellent; and very good–excellent between face-to-face and postal administrations (.84–.96), although scores in postal administrations were lower (significant for psychosocial domain and overall SAQOL-39g in group two). These findings suggest that the SAQOL-39g yields similar results in different modes of administration. Researchers and clinicians may employ alternative modes, particularly in the longer term post-stroke, in order to reduce costs or facilitate clients with access difficulties.