Rigorous Qualitative Research Involving Data Collected Remotely From People With Communication Disorders: Experience From a Telerehabilitation Trial

Anglade, Carole; Tousignant, Michel; Gaboury, Isabelle

doi:10.1177/15459683221100489

Cited by 2 publications

(4 citation statements)

References 49 publications

(83 reference statements)

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“…Aphasia-related impairments, and lack of access or familiarisation with communicating online may have discouraged some people from being involved, though research suggests there may be benefits to engaging online with people with communication impairments. 64–66 …”

Section: Discussionmentioning

confidence: 99%

Understanding experiences, unmet needs and priorities related to post-stroke aphasia care: stage one of an experience-based co-design project

Anemaat,

Palmer,

Copland

et al. 2024

BMJ Open

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Objective People with post-stroke aphasia (language/communication impairment) and their supporters report mixed satisfaction with stroke and aphasia care. To date, however, their journey of care and the key service interactions that shape their experience have not been comprehensively explored. We aimed to investigate the lived experience of post-stroke aphasia care, across the continuum of care and by geographical location, to establish priorities for service design. Design This is the first stage of an experience-based co-design study. We purposively sampled people with aphasia (PWA) and significant others (SOs) across 21 hospital and health service sites, community groups and by self-referral. Participants shared experiences of care in online interviews and focus groups. Touchpoints (key moments that shape experience) and unmet needs were identified using qualitative thematic analysis. Priorities for service design were established using an adapted nominal group technique. Setting Sites spanned remote, regional and metropolitan areas in Queensland, Australia. Participants PWA (n=32; mild=56%; moderate=31%; severe=13%) and SOs (n=30) shared 124 experiences of acute, rehabilitation and community-based care in 23 focus groups and 13 interviews. Results Both positive and negative healthcare experiences occurred most frequently in hospital settings. Negative experiences regularly related to communication with health professionals, while positive experiences related to the interpersonal qualities of healthcare providers (eg, providing hope) for PWA, or witnessing good rapport between a PWA and their health professional for SOs. To improve services, PWA prioritised communicatively accessible education and information and SOs prioritised access to psychological and peer support. Conclusions We identified key aspects of post-stroke aphasia care that shape experience. The needs of PWA and SOs may be better met through health professional training in supported communication, increased service availability in regional and remote areas, communication-accessible hospital environments, increased access to psychological and peer support, and meaningful involvement of SOs in rehabilitation.

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Section: Discussionmentioning

confidence: 99%

Understanding experiences, unmet needs and priorities related to post-stroke aphasia care: stage one of an experience-based co-design project

Anemaat,

Palmer,

Copland

et al. 2024

BMJ Open

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“…In addition, some researchers conducted virtual co-design due to the COVID-19 pandemic [ 46 , 51 , 94 ]. While virtual co-design has benefits, such as reducing the impact of location and functional and cognitive disability on participant engagement in co-design and may require fewer resources [ 152 , 153 ], researchers must consider the unique challenges of conducting co-design virtually, particularly if participants have low digital skills or have cognitive, communication and/or visual challenges [ 149 , 153 , 154 ]. Additionally, some participants may not have the same access to reliable internet and adequate technology [ 155 ], leading to inequitable opportunities to participate.…”

Section: Discussionmentioning

confidence: 99%

“…Additionally, some participants may not have the same access to reliable internet and adequate technology [ 155 ], leading to inequitable opportunities to participate. Also, ethical issues, such as informed consent capacity and data validity, can be magnified during virtual data collection [ 149 ]. Virtual co-design may reduce participant burden (e.g., travel) [ 152 , 153 ]; however, there are few models for people with stroke, particularly people with aphasia.…”

Section: Discussionmentioning

confidence: 99%

“…While some researchers may rely on caregivers/family members for communication support [73], due to the burden on caregivers and potential differences in the participant and caregiver/family members' responses, it is recommended that data collection methods be modified to be more accessible [146]. Another consideration for co-design with individuals with stroke is the participants' informational and literacy needs; this may require a need to account for additional time in developing written materials to ensure the materials are at appropriate reading levels (e.g., [147][148][149]). These strategies may apply to other groups with communication challenges.…”

Section: Discussionmentioning

confidence: 99%

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Co-design for stroke intervention development: Results of a scoping review

Singh,

Benn,

Fung

et al. 2024

PLoS ONE

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Background Co-design methodology seeks to actively engage end-users in developing interventions. It is increasingly used to design stroke interventions; however, limited guidance exists, particularly with/for individuals with stroke who have diverse cognitive, physical and functional abilities. Thus, we describe 1) the extent of existing research that has used co-design for stroke intervention development and 2) how co-design has been used to develop stroke interventions among studies that explicitly used co-design, including the rationale, types of co-designed stroke interventions, participants involved, research methodologies/approaches, methods of incorporating end-users in the research, co-design limitations, challenges and potential strategies reported by researchers. Materials and methods A scoping review informed by Joanna Briggs Institute and Arksey & O’Malley methodology was conducted by searching nine databases on December 21, 2022, to locate English-language literature that used co-design to develop a stroke intervention. Additional data sources were identified through a hand search. Data sources were de-duplicated, and two research team members reviewed their titles, abstracts and full text to ensure they met the inclusion criteria. Data relating to the research objectives were extracted, analyzed, and reported numerically and descriptively. Results Data sources used co-design for stroke intervention development with (n = 89) and without (n = 139) explicitly using the term ‘co-design.’ Among studies explicitly using co-design, it was commonly used to understand end-user needs and generate new ideas. Many co-designed interventions were technology-based (65%), and 48% were for physical rehabilitation or activity-based. Co-design was commonly conducted with multiple participants (82%; e.g., individuals with stroke, family members/caregivers and clinicians) and used various methods to engage end-users, including focus groups and workshops. Limitations, challenges and potential strategies for recruitment, participant-engagement, contextual and logistical and ethics of co-designed interventions were described. Conclusions Given the increasing popularity of co-design as a methodology for developing stroke interventions internationally, these findings can inform future co-designed studies.

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Rigorous Qualitative Research Involving Data Collected Remotely From People With Communication Disorders: Experience From a Telerehabilitation Trial

Cited by 2 publications

References 49 publications

Understanding experiences, unmet needs and priorities related to post-stroke aphasia care: stage one of an experience-based co-design project

Understanding experiences, unmet needs and priorities related to post-stroke aphasia care: stage one of an experience-based co-design project

Co-design for stroke intervention development: Results of a scoping review

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