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Background: The impact of chronic aphasia following stroke on quality of life (QOL) is widely acknowledged, with improved QOL recognised as an important outcome in aphasia recovery and supported by emerging quantitative measures. One of the key constructs recognised as contributing to QOL in other chronic conditions is psychosocial adjustment, the...
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Context 1
... his second interview, one person with aphasia (PWA1) died and a further participant was recruited to preserve the diversity of char- acteristics (PWA4) and offer his perspective in the remaining interviews. Details are also provided in Table 1 In addition to the people with aphasia, three people without aphasia representing different roles were recruited at the outset of their involvement with CHANT to take part in the interviews: one carer of a person with aphasia (selected by the CHANT SLT and the referring therapist), one volunteer from the Stroke Association (recom- mended by the Stroke Association Communication Support Coordinator) and one Local Council employee (recommended by the Council lead for the CHANT Steering group, see Table 2). Bias was reduced by early recruitment of the interview partici- pants during the launch phase of the programme to ensure no prior knowledge of satisfaction and outcome. ...
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Objectives
There is a lack of evidence‐based psychological therapies for dementia and psychological distress. The study aimed to develop a compassion focused therapy intervention for people with dementia with depression and/or anxiety, and to assess its feasibility, acceptability, and utility.
Methods
A mixed methods multiple case series (n = 7) w...
Citations
... This is an established form of interpretive phenomenological analysis using constant comparisons to derive themes [37] (p. 101), which is suitable for people with aphasia [44]. The analysis proceeded in parallel with the data collection, allowing the participants to influence the course of the study. ...
... Met with researcher empathy and respect, this sharing enabled a privileged relationship of trust with participants who were still vulnerable. (Themes concerning post-traumatic adjustment in aphasia were not included here but have been explored elsewhere [36,44,47]). In this context, participant insights were encouraged and valued, and their own terms of reference were adopted. ...
... They voiced an enthusiasm for identifying shared ground with other participants and for using the findings in rehabilitation in general (as a means of recognizing their own contribution, giving value to their struggle, and helping others in the future). Empowerment may constitute a driver for promoting selfefficacy and self-management, with consequences for personal identity and living with a long-term condition [44]. ...
People with acquired apraxia of speech (AOS) and aphasia commonly experience long-term communication disability without support for their ongoing recovery or self-management. Little is known about their lived experience of metalinguistic abilities and capacity to harness them for self-management of speech production. The author, a speech and language therapist (SLT), revisited her previous qualitative study after her own more recent lived experience of recovering from mild aphasia. Participant perspectives were explored from a longitudinal case series (eleven people with confirmed AOS and aphasia discharged from SLT), with full ethical approval. The anonymized data comprised detailed transcripts from videoed semi-structured interviews, participant assessments, field notes and reflections, member checking, and reflexivity. The original systematic thematic analysis of these data in NVivo software was re-interrogated by the author, deriving three overarching themes: Metalinguistic awareness of spoken communication breakdown, Self-management, and Therapeutic assessment. The participants conveyed the nature, occurrence, context, mechanism, and purpose underlying errors in spoken communication (themes of What, When, Where, How and Why). They generated compensatory strategies, elucidated via subthemes with quotations, verified contemporaneously by an original participant volunteer. The findings support the value of metalinguistic co-construction during in-depth assessments of communication disability, offering fresh avenues for long-term self-management in aphasia and AOS.
... Moreover, the spirituality of people with aphasia has been neglected, despite the incidence and prevalence of aphasia [4], perhaps reflecting perceptions that aphasia is a barrier to addressing concerns about meaning and purpose in life (already reviewed [5,6] and highlighted [7]). Spiritual aspects of aphasia rehabilitation are poorly understood [8], though identified within adjustment [9]. Given that spirituality is known to be important in health and wellbeing [10 -13], concerns resilience in the elderly [14] and merits special consideration in chronic health conditions [15], people with aphasia should not be excluded. ...
... Spirituality in aphasia had emerged as a theme from the author's previous engagement with people with long-term aphasia [9,43]. The author was now working as an SLT in a hospital outpatient setting. ...
Underrepresented in research coproduction, and in spirituality research, people with aphasia partnered with the author in action research incorporating communication access techniques. They became a coproduction Steering group for a study into assessing and supporting spiritual health in aphasia. The Steering group were embedded at multiple levels in the research process , likened to negotiating locks on a canal. The coproduction evidenced how published standards could be met when including people with communication disability. The process shaped the WELLHEAD Toolkit (for spiritual health assessment and support-the product) in its feasibility study, thus ensuring accessibility and acceptability from a range of spiritual and religious viewpoints. Co-creation (product and process) was valued, with impact upon spirituality of those participating as their perceptions were unlocked. Further work is exploring how far others' perceptions of their spirituality may be unlocked using the WELLHEAD Toolkit techniques, including applications beyond communication disability.
... A range of reviews have added detailed information and guidelines for the use of the ICF, 2-5 which is typically used as a common frame of reference for a variety of rehabilitation research. [6][7][8][9] This article proposes a strengthening of focus in rehabilitation of the process of individual psychosocial adjustment. After a brief discussion of the nature and importance of psychosocial adjustment, various types of theoretical adjustment models are presented and linked with the ICF. ...
Purpose
Literature regarding the WHO’s International Classification of Function, Disability and Health (ICF) has called for research into psychosocial adjustment processes. This project aims to establish the relevance of the Integrative Model of Adjustment to Chronic Conditions (IMACC) as a framework for research and a clinical tool in rehabilitation by linking it with the ICF.
Methods
The study employed secondary analysis of data from the original IMACC grounded theory study, where 8 women and 2 men with type 2 diabetes mellitus participated. IMACC consists of 3 interconnected parts comprising a total of 13 components. Datasets used for the study consisted of the qualitative data underpinning each IMACC component. Meaningful concepts from each dataset were linked to ICF categories using the updated ICF linking rules.
Results
Results showed that all 13 IMACC components accommodate ICF category codes from all health and health related ICF components in patterns consistent with the theoretical conceptualisation of each separate IMACC component.
Conclusion
IMACC maps comprehensively to the ICF framework and provides a framework that may be useful for future ICF related research into biopsychosocial processes in psychosocial adjustment. IMACC provides a clinically applicable intervention for people with psychosocial adjustment difficulties consistent with the ICF framework.
... Comments on other methods of communication were also included into the transcription. Interview data were analysed by L.T. using an inductive reflexive thematic analysis (Braun & Clarke, 2020;Braun & Clarke, 2006), an analytical approach of identifying patterns within data that has often been used in to explore the perceptions and experiences of people with aphasia (e.g., Brown et al., 2013;Lawton et al., 2018;Mumby & Whitworth, 2013;Tregea & Brown, 2013;Young et al., 2012). L.T. was new to qualitative research but had guidance and support from her supervisor (P.C.) with the analysis. ...
Background:
Written communication has become an increasingly important part of everyday life in social, educational and professional spheres. The substantial increase in writing via the internet and mobile technologies provides both an opportunity for social engagement and distinct challenges for people with aphasia. Within the current literature there has been limited research into the lived experiences of people with aphasia of their writing difficulties and how these affect their ability to communicate.
Aims:
This qualitative study aimed to explore the experiences of people with aphasia of living with language-related writing difficulties and the impact of these on their lives.
Methods & procedures:
Eight people with post-stroke aphasia and writing difficulties took part in semi-structured interviews. The interviews were analysed using inductive reflexive thematic analysis.
Outcomes & results:
Two themes were found in the data. The first theme was a gradual and effortful improvement to writing: Participants described how writing had improved since their stroke due to strategies and support, but they still found writing to be difficult and frustrating and described many barriers to writing. The second theme was the importance of writing for fulfilling adult social roles: Participants found writing to be important for communicating with family, friends and organizations, but their participation in society and self-esteem and confidence were impacted by writing difficulties; reduced social roles meant reduced need for writing, but participants were still motivated to work towards writing goals.
Conclusions & implications:
The findings demonstrate the emerging importance of writing skills for people with aphasia with respect to communication, well-being, participation and inclusion in society, and carrying out social roles. They provide an insight into the process of improvement, including the difficulties, facilitators and barriers. Implications for speech and language therapy assessment and management are discussed.
What this paper adds:
What is already known on the subject People with aphasia have difficulties with writing that can affect their ability to communicate. A small body of qualitative research has provided insights into individuals' experiences of literacy difficulties. More research is needed to understand the writing experiences of people with aphasia to help design appropriate assessments and interventions. What this paper adds to existing knowledge Participants experienced gradual and effortful improvement since their stroke. They felt negative about aspects of their writing, including speed, accuracy and range of vocabulary. Writing was facilitated through assistive technologies, spelling practice and support from others; barriers included technology, lack of time, stroke-related symptoms and others' lack of awareness about aphasia. Participants considered writing skills to be important, particularly for communication, carrying out adult social roles and participating in society, and were therefore still working towards goals related to everyday writing activities. What are the potential or actual clinical implications of this work? This study suggests that speech and language therapy assessment should include interviewing participants about their activities, strengths, difficulties, facilitators and barriers in writing, and informal assessment of a range of functional writing tasks. Intervention should be tailored to the individual's needs. This should include meaningful activities that relate to functional everyday writing and, where appropriate, self-management, compensatory technologies and group approaches, while making use of existing strategies identified by the individual.
... Identifying processes of integrating negative emotional responses to re-engage in life participation is paramount for developing effective interventions, self-management support strategies and responsive psychological services promoting personally defined recovery and well-being in the context of aphasia. Within aphasiology, related concepts such as adjustment, living successfully and self-management have been explored from the perspectives of PWA (Grohn et al., 2014;Wray et al., 2019;Mumby & Whitworth, 2013). Mumby and Whitworth (2013) explored psychosocial adjustment with three people with (and three without) aphasia who were interviewed at multiple time points. ...
... Within aphasiology, related concepts such as adjustment, living successfully and self-management have been explored from the perspectives of PWA (Grohn et al., 2014;Wray et al., 2019;Mumby & Whitworth, 2013). Mumby and Whitworth (2013) explored psychosocial adjustment with three people with (and three without) aphasia who were interviewed at multiple time points. ...
... Meaningful participation and increasing self-worth facilitated adjustment and enhanced quality of life. Overcoming reduced access to health services, societal ignorance of aphasia, communication impairment, negative emotional responses and social isolation were also important (Mumby & Whitworth, 2013). Processes of personal and emotional adjustment over time involved rationalizing one's current situation, finding new meaning and 'wholeness' following 'fragmentation' and upheaval. ...
Background:
People with post-stroke aphasia (PWA) are more likely to experience serious mood disorders compared with those without. Emotional regulation may be important for influencing life participation after stroke. Understanding emotional regulation in the context of aphasia is important for promoting personally defined recovery, psychological well-being and life participation.
Aims:
To explore how individuals experience and regulate negative emotional responses to aphasia as part of re-engaging with life.
Methods & procedures:
In-depth semi-structured qualitative interviews with 14 PWA were conducted. The focus and design were developed with public and patient involvement contributors. Reflexive thematic analysis was applied.
Outcomes & results:
Analysis generated three themes, which captured inherent diversity across participants in terms of emotional experiences, responses and regulation strategies: (1) emotional upheaval at all stages of recovery; (2) regulating emotional upheaval; and (3) discerning possibilities for life participation. Emotional regulation occurred both within and without the context of formal support services.
Conclusions & implications:
Individuals may be differently (en)abled in responding positively, with implications for aphasia psychological support and self-management interventions. The findings may inform future interventions to optimize well-being and personally meaningful outcomes for PWA.
What this paper adds:
What is already known on the subject PWA experience significant psychosocial upheaval and are at risk of mood disorders. Emotional regulation may be important for influencing one's emotional state, social participation and relationships after stroke. There is a need to better understand the ways in which PWA experience and regulate their emotions to develop better support for personally defined recovery. What this paper adds to existing knowledge PWA may experience significant and pervasive mood disorders in the long term after stroke. This may be compounded by worries for their children's well-being. Some, but not all, regulate emotions by drawing on positivity, determination, gratitude or stoicism. Having (supportive) opportunities to experience the impact of aphasia is important for discerning helpful strategies and participation opportunities. What are the potential or actual clinical implications of this work? Confronting altered abilities requires supportive, responsive opportunities sensitive to emotional responses. Opportunities for peer support and/or meaningful emotional support and compassion from family and friends are important therapeutic targets. Therapeutic input should pay attention to any familial and parenting concerns that may be compounding low mood. Although emotional regulation and recovery may occur without formal support, mental health services must be organized in such a way that PWA can access as needed.
... Surveys of SLTs have identified a number of barriers to the adoption of telerehabilitation, including low technological confidence amongst therapists, problems with internet connectivity, and cost restrictions; respondents were also concerned that telerehabilitation might threaten the therapeutic relationship with clients and replace face-to-face interactions [38,39]. More positive views have been reported from those who have actively delivered remote services, including improved access to services and savings in time and costs [39,40]. ...
... A number of studies have explored the experiences of staff, students, volunteers, and peer leaders who have delivered aphasia community groups (e.g., [17,19,20,[40][41][42]). Just one study has investigated the views of clinicians delivering remote group intervention [25]. ...
Purpose
This study explored the acceptability to service providers of delivering a novel group support intervention for people with aphasia (PWA) in a virtual world.
Materials and methods
The service providers were six group coordinators and 10 volunteers. Fourteen of the service providers participated in a semi-structured qualitative interview and 15 took part in a consensus group discussion. Qualitative interviews were analysed using framework analysis. For consensus group discussions, nominal group rankings were analysed and semantically similar responses were identified.
Results
Service providers described the virtual world as a safe space in which to communicate, connect, and experiment. The key barriers were technical, particularly relating to sound and connectivity issues. Service providers suggested a range of improvements to the virtual world and intervention programme. They reported that PWA benefitted from accessing a support group in a virtual world, with opportunities to connect socially and to develop their communication skills.
Conclusions
Service providers found delivery of group support intervention in a virtual world to be acceptable. The use of a bespoke virtual world to deliver group support intervention may enhance the experience and increase its accessibility, enabling more PWA to benefit from this type of intervention.
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Implications for rehabilitation
• People with aphasia benefit from group support intervention but may find it difficult to access face-to-face groups.
• Delivery of group support intervention in a virtual world is acceptable to service providers, can enhance the experience and increase accessibility of groups.
• Technical challenges present potential barriers when delivering group support in a virtual world, relating particularly to sound and connectivity.
• Potential benefits of this model of delivery, as perceived by service providers, include opportunities to connect socially and to develop communication skills plus specific and strong levels of enjoyment of the virtual context.
... Adjustment was not a linear process; rather, it was re-evaluated and renegotiated over time in response to changes in recovery, health and wider circumstances. Mumby and Whitworth (2013) interviewed a subsample of participants (three with aphasia, three without) about psychosocial adjustment in a community-based intervention for people > 1 year post-stroke. They attributed adjustment to three stages in rationalization-looking back, around and forward-and transforming negative emotional reactions into positive outcomes. ...
... In particular, those with a strong sense of self appeared capable of tolerating uncertainty and maintaining optimism. The reflection they described is similar to the rationalization element of adjustment described by Mumby and Whitworth (2013) as looking back, around and forward. Our findings imply the foundations of this recalibrated outlook may begin to be laid in the post-acute phase, with some participants explicitly saying they preferred to live in the moment or look to the future, rather than look back at stroke onset, and describing setting themselves targets to move towards. ...
Background
Stroke and aphasia can have a profound impact on people's lives, and depression is a common, frequently persistent consequence. Social networks also suffer, with poor social support associated with worse recovery. It is essential to support psychosocial well‐being post‐stroke, and examine which factors facilitate successful adjustment to living with aphasia.
Aims
In the context of a feasibility randomized controlled trial of peer‐befriending (SUPERB), this qualitative study explores adjustment for people with aphasia in the post‐acute phase of recovery, a phase often neglected in previous research.
Methods & Procedures
Semi‐structured interviews were conducted with 20 people with aphasia and 10 significant others, who were purposively sampled from the wider group of 56 people with aphasia and 48 significant others. Interviews took place in participants’ homes; they were analysed using framework analysis.
Outcomes & Results
Participants with aphasia were 10 women and 10 men; their median (interquartile range—IQR) age was 70 (57.5–77.0) years. Twelve participants had mild aphasia, eight moderate–severe aphasia. Significant others were six women and four men with a median (IQR) age of 70.5 (43–79) years. They identified a range of factors that influenced adjustment to aphasia post‐stroke. Some were personal resources, including mood and emotions; identity/sense of self; attitude and outlook; faith and spirituality; and moving forward. Significant others also talked about the impact of becoming carers. Other factors were external sources of support, including familial and other relationships; doctors, nurses and hospital communication; life on the ward; therapies and therapists; psychological support, stroke groups; and community and socializing.
Conclusions & Implications
To promote adjustment in the acute phase, hospital staff should prioritize the humanizing aspects of care provision. In the post‐acute phase, clinicians play an integral role in supporting adjustment and can help by focusing on relationship‐centred care, monitoring mental health, promoting quality improvement across the continuum of care and supporting advocacy.
What this paper adds
What is already known on the subject
• Anxiety and depression are common consequences of stroke, with depression rates high at 33% at 1 year post‐onset. There is evidence that the psychological needs of people with aphasia are even greater than those of the general stroke population. Social support and social networks are also negatively impacted. Few studies have examined adjustment when people are still in hospital or in the early stages of post‐stroke life in the community (< 6 months). Further, many stroke studies exclude people with aphasia.
What this paper adds to existing knowledge
• Adjustment to living with stroke and aphasia begins in the early stages of recovery. While this partly depends on personal resources, many factors depend on external sources of help and support. These include doctors, nurses and hospital communication, their experience of life on the ward, and their therapists’ person‐centred care.
What are the potential or actual clinical implications of this work?
• Clinicians play an integral role in facilitating people with aphasia to utilize their personal resources and support systems to adjust to life after stroke. They can help by focusing on relationship‐centred care, monitoring mental health, promoting quality improvement across the continuum of care and supporting advocacy.
... In keeping with a policy shift towards person-centred care for living well with chronic conditions, including stroke [16][17][18], aphasia researchers are increasingly focused on understanding how to support wellbeing and life participation [19,20]. There is a growing body of qualitative literature examining the insider perspectives of PWA on a range of inter-related topics including participation, community integration, life roles, coping, adjustment and quality of life [14,[21][22][23][24][25][26][27][28][29][30][31][32][33] as well as specific research in living successfully or living 'well' with aphasia (LWA) [34][35][36][37][38][39]. In a recent qualitative evidence synthesis exploring the perspectives of PWA towards topics relating to LWA, we found that LWA is promoted via: personal integration and acceptance of aphasia; flexible, responsive, long-term health and related support services for PWA; opportunities for community participation and contribution; support for, and from, family and friends; access to aphasia information; and healthcare workers who are knowledgeable about aphasia and supporting communication with PWA [40]. ...
Purpose
This study aimed to explore the perspectives of working-aged adults with post-stroke aphasia (PWA) towards what has or would help them in living well with aphasia (LWA). This paper reports the findings in relation to stroke care and its relevance for LWA.
Materials and methods
This qualitative study was designed with input from a Public and Patient Involvement advisory group. We conducted in-depth, semi-structured interviews with 14 PWA. Data were analysed following principles of reflexive thematic analysis.
Results
Support services and LWA spanned five themes: Inpatient care; Support in the community; Speech therapy; Mental health; and Aphasia education and training. Per the findings, all aspects of stroke care were affected and challenged by aphasia. Access to services and information was variable. PWA of working-age, their families and children need access to person-centred stroke care and information responsive to their changing needs at all stages of recovery. Healthcare workers must be equipped with aphasia competency.
Conclusions
The results highlight a need for equitable, transparent, responsive access to services, information and stroke liaison support. The findings extend knowledge of the importance of stroke care for supporting working-aged adults and their families to live well in the context of aphasia.
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Implications for rehabilitation
• There is a need for equitable, transparent access to a responsive integrated pathway of stroke care to support living well with aphasia.
• People with aphasia post-stroke and their families need access to person-centred stroke care and information responsive to their changing needs at all stages of recovery.
• This includes flexible access to mental healthcare and speech and language therapy.
• In order to access relevant care, people with post-stroke aphasia need access to information and stroke liaison support.
• Training to improve aphasia competency is imperative for healthcare workers.
... 2020, 10, 688 2 of 23 for the severe effects of communication deficits on social integration and well-being for PWA post-stroke. Health professional researchers have developed QoL-type of questionnaires within the International Classification Functioning (ICF) framework [6] to examine these issues [7]. PWA are traditionally excluded from participating in research, because of perceived communication difficulties and assumptions about inaccurate responses [8-10]. ...
Background:
Quality of Life (QoL) questionnaires are used to describe the impact of aphasia on stroke survivors' life. People with aphasia (PWA) are traditionally excluded from research, potentially leading to a mismatch between the factors chosen in the tools and the realistic needs of PWA. The purpose of this review was to determine the direct involvement of PWA in the creation of QoL and aphasia impact-related questionnaires (AIR-Qs).
Methods:
A scoping review methodology was conducted by an expert librarian and two independent reviewers on health sciences based on the Preferred Reporting Items for Systematic Reviews and Metanalyses extension for Scoping Reviews (PRISMA-ScR) protocol, through a literature search in five databases: Medline Complete, PubMed, PsychINFO, Scopus, and Google Scholar. Search terms included 'stroke', 'people with aphasia', 'communication', 'well-being', and 'quality of life'.
Results:
Of 952 results, 20 studies met the eligibility criteria. Of these, only four AIR-Qs studies (20%) were found reporting the direct involvement of PWA, while no QoL tools did so. Evidence showed involvement in the creation phase of AIR-Q, mainly in a consultation role.
Conclusions:
There is an absence of a framework for conducting and reporting the involvement of PWA in qualitative participatory research studies, which limits effectiveness to promote equitable best practice in aphasia rehabilitation.
... Previous work by the primary investigator (PI) concerning adjustment processes in aphasia post stroke (Mumby & Whitworth, 2013) identified improvements in quality of life and a shift towards "wholeness" involving spirituality. Grieving for loss, rationalisation, and finding meaning characterised personal and emotional adjustment, but the spiritual mechanisms were not fully explored. ...
Background: Spiritual aspects of aphasia rehabilitation are poorly understood, though identified within adjustment. Existing spiritual health assessments have not been used with people with aphasia, and no structured program to facilitate intervention has been documented, despite acknowledgements that spirituality is important in health and wellbeing and distinct from quality of life and mental health.
Aims: Mixed methods were used to investigate the accessibility and acceptability of a spiritual health assessment (SHALOM) and WELLHEAD, a toolkit originated by Mumby for spiritual health assessment and intervention, using the religiously neutral dimensions of “WIDE, LONG, HIGH, and DEEP”.
Method: A Steering group (five people with aphasia) shaped the feasibility study cyclically, agreeing that “Meaning and purpose” defined spirituality, and selecting SHALOM. WELLHEAD was modified collaboratively with the Steering group and Hospital Chaplain. A convenience sample of 10 people with aphasia (discharged from therapy) represented diverse aphasia histories, ages, and religious backgrounds. Participants completed a two-hour session using SHALOM, the WELLHEAD toolkit and a feedback questionnaire within video-recorded interviews. Quantitative results from all three components were integrated with a qualitative thematic analysis in NVivo 11 including numerical and descriptive summaries verified by the participants, feedback interview transcripts and field notes with reflections. The thematic analysis was systematically and independently verified by a co-researcher. Feedback from participants was further verified by incorporating their comments from reviewing the overall findings.
Results: Quantitative and qualitative feedback evaluated the materials positively. Thematic analysis provided evidence of the accessibility, acceptability, and positive impact of WELLHEAD irrespective of aphasia severity or aetiology, and religious background. “Belief”, “Faith”, and “Religion” were disambiguated. SHALOM was also linguistically and cognitively accessible with communication support even for those with severe aphasia. Scores from WELLHEAD and SHALOM were compared and set into the context of wider standardisation of SHALOM, providing the first evidence of spiritual health measures in participants with aphasia.
Conclusions: This preliminary work lays foundations for spiritual assessment and intervention in aphasia. Establishing the psychometric properties of SHALOM and WELLHEAD in people with aphasia requires a larger sample. Additional study of intervention is proposed, with clear potential for wider application of WELLHEAD in diverse settings and populations.
