'Emotion is of the essence. … Number one priority': A nested qualitative study exploring psychosocial adjustment to stroke and aphasia.
SUPERB study
aphasia
post-acute
psychosocial adjustment
qualitative interviews
stroke
Journal
International journal of language & communication disorders
ISSN: 1460-6984
Titre abrégé: Int J Lang Commun Disord
Pays: United States
ID NLM: 9803709
Informations de publication
Date de publication:
05 2021
05 2021
Historique:
revised:
08
02
2021
received:
15
09
2020
accepted:
01
03
2021
pubmed:
8
4
2021
medline:
26
10
2021
entrez:
7
4
2021
Statut:
ppublish
Résumé
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. 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. 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. 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. 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.
Sections du résumé
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.
Identifiants
pubmed: 33826205
doi: 10.1111/1460-6984.12616
doi:
Types de publication
Journal Article
Randomized Controlled Trial
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
594-608Informations de copyright
© 2021 The Authors. International Journal of Language & Communication Disorders published by John Wiley & Sons Ltd on behalf of Royal College of Speech and Language Therapists.
Références
Albon, L. and Vaughan, L., 2014, Adolescents and young adults on the acute medical unit: how might we do it better?. Clinical medicine (London, England), 14(6), 618-622. https://doi.org/10.7861/clinmedicine.14-6-618
Anderson, D. M., Keith, J. and Novak, P. D. Eds., 2002, Mosby's Medical Dictionary (6th ed.). (St. Louis, MO: Mosby, A Harcourt Health Science Company).
Ayerbe, L., Ayis, S., Wolfe, C. D. and Rudd, A. G., 2013, Natural history, predictors and outcomes of depression after stroke: systematic review and meta-analysis. British Journal of Psychiatry, 202(1), 14-21. https://doi.org/10.1192/bjp.bp.111.107664.
Baker, C., Worrall, L., Rose, M. and Ryan, B., 2020, ‘It was really dark’: the experiences and preferences of people with aphasia to manage mood changes and depression. Aphasiology, 34(1), 19-46, https://doi.org/10.1080/02687038.2019.1673304
Boden-Albala, B., Litwak, E., Elkind, M. S., Rundek, T. and Sacco, R. L., 2005, Social isolation and outcomes post stroke. Neurology, 64(11), 1888-1892. https://doi.org/10.1212/01.WNL.0000163510.79351.AF
Bright, F., McCann, C. and Kayes, N., 2020, Recalibrating hope: a longitudinal study of the experiences of people with aphasia after stroke. Scandinavian Journal of Caring Sciences, 34, 428-435
Brown, K., Davidson, B., Worrall, L. and Howe, T., 2013, Making a good time”: the role of friendship in living successfully with aphasia. International Journal of Speech-Language Pathology, 15(2), 165-175, https://doi.org/10.3109/17549507.2012.692814
Bråndal, A., Eriksson, M., Glader, E. et al., 2019, Effect of early supported discharge after stroke on patient reported outcome based on the Swedish Riksstroke registry. Bmc Neurology [Electronic Resource], 19(1), 40. https://doi.org/10.1186/s12883-019-1268-8
Condon, L., Benford, P., Kontou, E., Thomas, S. and Walker, M., 2019, The use of carer perspectives and expert consensus to define key components of a biopsychosocial support intervention for stroke carers. Topics in Stroke Rehabilitation, 26(6), 440-447, https://doi.org/10.1080/10749357.2019.1623472
Faulkner, S. L. and Trotter, S. P., 2017, Data saturation. In (Matthes, J. Ed.) The International Encyclopedia of Communication Research Methods. (Hoboken, NJ: Wiley-Blackwell). 1-2.
Gale, N. K., Heath, G., Cameron, E., Rashid, S. and Redwood, S., 2013, Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC medical research methodology, 13(1), 1-8.
Ghose, S. S., Williams, L. S. and Swindle, R. W., 2005, Depression and other mental health diagnoses after stroke increase inpatient and outpatient medical utilization three years poststroke. Medical Care, 43(12), 1259-1264. https://doi.org/10.1097/01.mlr.0000185711.50480.13.
Giaquinto, S., Spiridigliozzi, C. and Caracciolo, B., 2007, Can faith protect from emotional distress after stroke?. Stroke; A Journal of Cerebral Circulation, 38(3), 993-997.
Goldberg, D. P., 1972, The Detection of Psychiatric Illness by Questionnaire. (New York: Oxford University Press).
Grawburg, M., Howe, T., Worrall, L. and Scarinci, N., 2019, Family-centered care in aphasia: Assessment of third-party disability in family members with the Family Aphasia Measure of Life Impact. Topics in Language Disorders, 39(1), 29-54.
Grohn, B., Worrall, L., Simmons-Mackie, N. and Hudson, K., 2014, Living successfully with aphasia during the first year post-stroke: a longitudinal qualitative study. Aphasiology, 28(12), 1405-1425.
Grohn, B., Worrall, L. E., Simmons-MACKIE, N. and Brown, K., 2012, The first 3-months post-stroke: what facilitates successfully living with aphasia?. International Journal of Speech-Language Pathology, 14(4), 390-400.
Hackett, M. L. and Pickles, K., 2014, Part I: frequency of depression after stroke: an updated systematic review and meta-analysis of observational studies. International Journal of Stroke, 9(8), 1017-1025. https://doi.org/10.1111/ijs.12357.
Hersh, D., Godecke, E., Armstrong, E., Ciccone, N. and Bernhardt, J., 2016, Ward Talk”: nurses' interaction with people with and without aphasia in the very early period post stroke. Aphasiology, 30(5), 609-628. https://doi.org/10.1080/02687038.2014.933520
Hilari, K., Behn, N., James, K., Northcott, S., Marshall, J., Thomas, S., Simpson, A., Moss, B., Flood, C., Mcvicker, S. and Goldsmith, K., 2021, Supporting wellbeing through peer-befriending (SUPERB) for people with aphasia: A feasibility randomised controlled trial. Clinical Rehabilitation, p.0269215521995671.
Howe, T., Davidson, B., Worrall, L., Hersh, D., Ferguson, A., Sherratt, S. and Gilbert, J., 2012, ‘You needed to rehab… families as well’: family members’ own goals for aphasia rehabilitation. International journal of language & communication disorders, 47(5), 511-521.
Jones, F., Postges, H. and Brimicombe, L., 2016, Building Bridges between healthcare professionals, patients and families: a coproduced and integrated approach to self-management support in stroke. Neurorehabilitation, 39, 471-480 https://doi.org/10.3233/NRE-161379 IOS Press 471
Dekker, J. and De Groot, V. 2018, Psychological adjustment to chronic disease and rehabilitation-an exploration. Disability and Rehabilitation, 40(1), 116-120, https://doi.org/10.1080/09638288.2016.1247469
Kauhanen, M. L., Korpelainen, J. T., Hiltunen, P., Määttä, R., Mononen, H., Brusin, E., … MyllylÄ, V. V., 2000, Aphasia, depression, and non-verbal cognitive impairment in ischaemic stroke. Cerebrovascular Diseases, 10(6), 455-461. https://doi.org/10.1159/000016107
Kersten, P., Low, J., Ashburn, A., George, S. and Mclellan, D., 2002, The unmet needs of young people who have had a stroke: results of a national UK survey. Disability and Rehabilitation, 24(16), 860-866, https://doi.org/10.1080/09638280210142167
Kertesz, A., 2006, Western Aphasia Battery-Revised (WAB-R) (London, UK: Pearson)
Lanyon, L., Worrall, L. and Rose, M., 2018, What really matters to people with aphasia when it comes to group work? A qualitative investigation of factors impacting participation and integration. International journal of language & communication disorders, 53(3), 526-541.
Lincoln, N. B., Worthington, E., Mannix, K. and Lincoln, N., 2012, A survey of the management of mood problems after stroke by clinical psychologists. In Clinical Psychology Forum.
MacKenzie, S. and Marsh, I., 2019, The philosopher of ambiguity: exploring stories of spirituality of people with aphasia through the lens of Merleau-Ponty. Journal of Disability & Religion, 23(3), 211-226.
Mumby, K. and Whitworth, A., 2013, Adjustment processes in chronic aphasia after stroke: exploring multiple perspectives in the context of a community-based intervention. Aphasiology, 27(4), 462-489, https://doi.org/10.1080/02687038.2013.772559
Northcott, S. and Hilari, K., 2011, Why do people lose their friends after a stroke? International Journal of Language & Communication Disorders, 46(5), 524-534. https://doi.org/10.1111/j.1460-6984.2011.00079.x.
Northcott, S., Marshall, J. and Hilari, K., 2016, What factors predict who will have a strong social network following a stroke?. Journal of Speech, Language, and Hearing Research, 59(4), 772-783.
Northcott, S., Simpson, A., Thomas, S. A., Hirani, S. P., Flood, C. and Hilari, K., 2019, Solution Focused brief therapy In post-stroke Aphasia (SOFIA Trial): protocol for a feasibility randomised controlled trial. AMRC Open Research, 1
O'Halloran, R., Worrall, L. and Hickson, L., 2012, Stroke patients communicating their healthcare needs in hospital: a study within the ICF. International journal of language & communication disorders, 47(2), 130-143
Pohjasvaara, T., Vataja, R., Leppavuori, A., Kaste, M. and Erkinjuntti, T., 2001, Depression is an independent predictor of poor long-term functional outcome post-stroke. European Journal of Neurology, 8(4), 315-319. https://doi.org/10.1046/j.1468-1331.2001.00182.x.
Pound, C. and Randrup Jensen, L., 2018, Humanising communication between nursing staff and patients with aphasia: potential contributions of the Humanisation Values Framework. Aphasiology, 32(10), 1225-1249, https://doi.org/10.1080/02687038.2018.1494817
Ritchie, J. and Lewis, J. (eds), 2003, Qualitative Research: A Guide for Social Science Students and Researchers. (London: Sage).
Sarre, S., Redlich, C., Tinker, A., Sadler, E., Bhalla, A. and Mckevitt, C., 2014, A systematic review of qualitative studies on adjusting after stroke: lessons for the study of resilience. Disability and Rehabilitation, 36(9), 716-726, https://doi.org/10.3109/09638288.2013.814724
Theadom, A., Rutherford, S., Kent, B. and McPherson, K. & on behalf of the ARCOS IV Group, 2019, The process of adjustment over time following stroke: a longitudinal qualitative study. Neuropsychological Rehabilitation, 29(9), 1464-1474, https://doi.org/10.1080/09602011.2018.1440609
Tong, A., Sainsbury, P. and Craig, J., 2007, Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International journal for quality in health care, 19(6), 349-357.
Turner-Stokes, L., Kalmus, M. Hirani, D. and Clegg, F. 2005, The Depression Intensity Scale Circles (DISCs): a first evaluation of a simple assessment tool for depression in the context of brain injury. Journal of Neurology, Neurosurgery, and Psychiatry, 76, 1273-1278. https://doi.org/10.1136/jnnp.2004.050096
Winkler, M., Bedford, V., Northcott, S. and Hilari, K., 2014, Aphasia blog talk: how does stroke and aphasia affect the carer and their relationship with the person with aphasia? Aphasiology, 28(11): 1301-1319. https://doi.org/10.1080/02687038.2014.928665.
Worrall, L., Ryan, B., Hudson, K., Kneebone, I., Simmons-Mackie, N., Khan, A., Hoffmann, T., Power, E., Togher, L. and Rose, M., 2016, Reducing the psychosocial impact of aphasia on mood and quality of life in people with aphasia and the impact of caregiving in family members through the Aphasia Action Success Knowledge (Aphasia ASK) program: study protocol for a randomized controlled trial. Trials, 17(1), 153.
Worrall, L., 2019, The seven habits of highly effective aphasia therapists: the perspective of people living with aphasia. International Journal of Speech-Language Pathology, 21(5), 438-447.