Limited conversations about constrained futures: exploring clinicians’ conversations about life after stroke in inpatient settings
Felicity A. S. Bright
A * , Nicola M. Kayes A , Andrew Soundy B and Juliet Drown A
A
B
Abstract
After a stroke, people can find it challenging to look forward to the future. Hope, a critical resource for recovery, can be threatened and can be supported or diminished through interactions with clinicians. As such, understanding how conversations can support people embarking on life after a stroke is critical. Our study explored how clinicians talk about the future with patients and considered what factors shape how these conversations occur.
This study drew on the Interpretive Description methodology, informed by principles of ethnographic inquiry. We conducted 300 hours of observations and 76 interviews with five people with stroke and 37 clinicians. Data were analysed using the reflexive thematic analysis.
We constructed three themes that reflect how clinicians talk about the future with people in inpatient stroke services: (1) constrained temporal horizons, (2) limited talk controlled by clinicians, and (3) opening some doors while closing others.
Conversations about the future after stroke were constrained and limited: constrained to short-term futures and limited in what aspects of life after stroke were discussed. Creating conversational and relational spaces where people are supported to look to the future with a sense of possibility, hope, and potential is vital for assisting people to move forward in their lives after their stroke. Given its role in supporting people to move forward in their lives, communication must be seen as a core clinical skill and a clinical intervention in its own right.
Keywords: ethnography, health communication, hope, life after stroke, patient-provider interaction, qualitative, quality of life, stroke.
References
Ajjawi R, Higgs J (2012) Core components of communication of clinical reasoning: a qualitative study with experienced Australian physiotherapists. Advances in Health Sciences Education 17(1), 107-119.
| Crossref | Google Scholar | PubMed |
Alaszewski A, Alasewski H, Potter J (2006) Risk, uncertainty and life threatening trauma: analysing stroke survivor’s accounts of life after stroke. Forum: Qualitative Social Research 7(1), 1-18.
| Google Scholar |
Arntzen C, Hamran T, Borg T (2015) Body, participation and self transformations during and after in-patient stroke rehabilitation. Scandinavian Journal of Disability Research 17(4), 300-320.
| Crossref | Google Scholar |
Arwert HJ, Meesters JJL, Boiten J, Balk F, Wolterbeek R, Vliet Vlieland TPM (2018) Poststroke depression: a long-term problem for stroke survivors. American Journal of Physical Medicine and Rehabilitation 97(8), 565-571.
| Crossref | Google Scholar | PubMed |
Barker-Collo S, Krishnamurthi R, Witt E, Theadom A, Starkey N, Barber PA, Bennett D, Rush E, Arroll B, Feigin V (2017) Depression and anxiety across the first year after ischemic stroke: findings from a population-based New Zealand ARCOS-IV study. Brain Impairment 18(3), 265-276.
| Crossref | Google Scholar |
Bradley G, Baker K, Bailey C (2021) The meaning of rehabilitation: a qualitative study exploring perspectives of occupational therapists and physiotherapists working with older people in acute care. Disability and Rehabilitation 43(16), 2295-2303.
| Crossref | Google Scholar | PubMed |
Bright FAS, Reeves B (2020) Creating therapeutic relationships through communication: a qualitative metasynthesis from the perspectives of people with communication impairment after stroke. Disability and Rehabilitation 44, 2670-2682.
| Crossref | Google Scholar |
Bright FAS, Kayes NM, McCann CM, McPherson KM (2011) Understanding hope after stroke: a systematic review of the literature using concept analysis. Topics in Stroke Rehabilitation 18(5), 490-508.
| Crossref | Google Scholar | PubMed |
Bright FAS, Kayes NM, McCann CM, McPherson KM (2013) Hope in people with aphasia. Aphasiology 27(1), 41-58.
| Crossref | Google Scholar |
Bright FAS, Kayes NM, McPherson KM, Worrall LE (2018) Engaging people experiencing communication disability in stroke rehabilitation: a qualitative study. International Journal of Language & Communication Disorders 53(5), 981-994.
| Crossref | Google Scholar | PubMed |
Bright FAS, McCann CM, Kayes NM (2020) Recalibrating hope: a longitudinal study of the experiences of people with aphasia after stroke. Scandinavian Journal of Caring Sciences 34(2), 428-435.
| Crossref | Google Scholar |
Brown M, Levack W, McPherson KM, Dean SG, Reed K, Weatherall M, Taylor WJ (2014) Survival, momentum, and things that make me “me”: patients’ perceptions of goal setting after stroke. Disability and Rehabilitation 36(12), 1020-1026.
| Crossref | Google Scholar | PubMed |
Burton L-J, Forster A, Johnson J, Crocker TF, Tyson SF, Wray F, Clarke DJ (2021) Experiences and views of receiving and delivering information about recovery in acquired neurological conditions: a systematic review of qualitative literature. BMJ Open 11(4), e045297.
| Crossref | Google Scholar | PubMed |
Carlsson GE, Möller A, Blomstrand C (2009) Managing an everyday life of uncertainty – a qualitative study of coping in persons with mild stroke. Disability and Rehabilitation 31(101), 773-782.
| Crossref | Google Scholar | PubMed |
Cheng BBY, Ryan BJ, Copland DA, Wallace SJ (2022) Prognostication in post-stroke aphasia: perspectives of people with aphasia on receiving information about recovery. Neuropsychological Rehabilitation 31, 773-782.
| Crossref | Google Scholar |
Connolly T, Coats H, DeSanto K, Jones J (2021) The experience of uncertainty for patients, families and healthcare providers in post-stroke palliative and end-of-life care: a qualitative meta-synthesis. Age and Ageing 50(2), 534-545.
| Crossref | Google Scholar | PubMed |
Costa N, Olson R, Mescouto K, Hodges PW, Dillon M, Evans K, Walsh K, Jensen N, Setchell J (2022) Uncertainty in low back pain care – insights from an ethnographic study. Disability and Rehabilitation 45, 784-795.
| Crossref | Google Scholar |
Eilertsen G, Kirkevold M, Bjørk IT (2010) Recovering from a stroke: a longitudinal, qualitative study of older Norwegian women. Journal of Clinical Nursing 19(13–14), 2004-2013.
| Crossref | Google Scholar | PubMed |
Ellis-Hill CS, Horn S (2000) Change in identity and self-concept: a new theoretical approach to recovery following a stroke. Clinical Rehabilitation 14(3), 279-287.
| Crossref | Google Scholar |
Ellis-Hill C, Payne S, Ward C (2008) Using stroke to explore the Life Thread Model: an alternative approach to understanding rehabilitation following an acquired disability. Disability and Rehabilitation 30(2), 150-159.
| Crossref | Google Scholar | PubMed |
Evans M, Hocking C, Kersten P (2017) Mapping the rehabilitation interventions of a community stroke team to the extended International Classification of Functioning, Disability and Health Core Set for Stroke. Disability and Rehabilitation 39(25), 2544-2550.
| Crossref | Google Scholar | PubMed |
Finch E, Minchell E, Cameron A, Jaques K, Lethlean J, Shah D, Moro C (2022) What do stroke survivors want in stroke education and information provision in Australia? Health & Social Care in the Community 30(6), e4864-e4872.
| Crossref | Google Scholar | PubMed |
Foster A, O’Halloran R, Rose M, Worrall L (2014) “Communication is taking a back seat”: speech pathologists’ perceptions of aphasia management in acute hospital settings. Aphasiology 30(5), 585-608.
| Crossref | Google Scholar |
Gallagher P (2011) Becoming normal: a grounded theory study on the emotional process of stroke recovery. Canadian Journal of Neuroscience Nursing 33(3), 24-32.
| Google Scholar | PubMed |
Gold RL (1958) Roles in sociological field observations. Social Forces 36(3), 217-223.
| Crossref | Google Scholar |
Greenway A, Gustafsson L, Bower K, Walder K (2022) Exploring self-management within hospital-based stroke care: current and future opportunities. Disability and Rehabilitation 44(11), 2340-2346.
| Crossref | Google Scholar | PubMed |
Guo Y, Zhang Z, Lin B, Mei Y, Liu Q, Zhang L, Wang W, Li Y, Fu Z (2021) The unmet needs of community-dwelling stroke survivors: a systematic review of qualitative studies. International Journal of Environmental Research and Public Health 18(4), 2140.
| Crossref | Google Scholar | PubMed |
Heenan D (2023) Hospital social work and discharge planning for older people: challenges of working in a clinical setting. Ageing & Society 43(6), 1333-1350.
| Crossref | Google Scholar |
Hersh D, Godecke E, Armstrong E, Ciccone N, Bernhardt J (2016) “Ward talk”: nurses’ interaction with people with and without aphasia in the very early period poststroke. Aphasiology 30(5), 609-628.
| Crossref | Google Scholar |
Hjelmblink F, Holmstrom I (2006) To cope with uncertainty: Stroke patients’ use of temporal models in narratives. Scandinavian Journal of Caring Sciences 20(4), 367-374.
| Crossref | Google Scholar | PubMed |
Hole E, Stubbs B, Roskell C, Soundy A (2014) The patient’s experience of the psychosocial process that influences identity following stroke rehabilitation: a metaethnography. The Scientific World Journal 2014, 349151.
| Crossref | Google Scholar | PubMed |
Hutton L, Ownsworth T (2019) A qualitative investigation of sense of self and continuity in younger adults with stroke. Neuropsychological Rehabilitation 29(2), 273-288.
| Crossref | Google Scholar | PubMed |
Kagan A (1998) Supported conversation for adults with aphasia: methods and resources for training conversation partners. Aphasiology 12(9), 816-830.
| Crossref | Google Scholar |
Kitzmüller G, Mangset M, Evju AS, Angel S, Aadal L, Martinsen R, Bronken BA, Kvigne K, Bragstad LK, Hjelle EG, Sveen U, Kirkevold M (2019) Finding the way forward: the lived experience of people with stroke after participation in a complex psychosocial intervention. Qualitative Health Research 29(12), 1711-1724.
| Crossref | Google Scholar | PubMed |
Kneebone II (2016) Stepped psychological care after stroke. Disability and Rehabilitation 38(18), 1836-1843.
| Crossref | Google Scholar | PubMed |
Levack WMM, Dean SG, Siegert RJ, McPherson KM (2011) Navigating patient-centered goal setting in inpatient stroke rehabilitation: how clinicians control the process to meet perceived professional responsibilities. Patient Education and Counseling 85(2), 206-213.
| Crossref | Google Scholar | PubMed |
Loft MI, Martinsen B, Esbensen BA, Mathiesen LL, Iversen HK, Poulsen I (2019) Call for human contact and support: an interview study exploring patients’ experiences with inpatient stroke rehabilitation and their perception of nurses’ and nurse assistants’ roles and functions. Disability and Rehabilitation 41(4), 396-404.
| Crossref | Google Scholar | PubMed |
Lou S, Carstensen K, Jørgensen CR, Nielsen CP (2017) Stroke patients’ and informal carers’ experiences with life after stroke: an overview of qualitative systematic reviews. Disability and Rehabilitation 39(3), 301-313.
| Crossref | Google Scholar | PubMed |
Luker J, Lynch E, Bernhardsson S, Bennett L, Bernhardt J (2015) Stroke survivors’ experiences of physical rehabilitation: a systematic review of qualitative studies. Archives of Physical Medicine and Rehabilitation 96(9), 1698-1708.e1610.
| Crossref | Google Scholar | PubMed |
Maddern R, Kneebone II (2019) Receiving Bad News: A Thematic Analysis of Stroke Survivor Experiences. Journal of Patient Experience 6, 271-277.
| Crossref | Google Scholar | PubMed |
Mahoney FI, Barthel D (1965) Functional evaluation: the Barthel Index. Maryland State Medical Journal 14, 56-61.
| Google Scholar |
Malterud K, Siersma VD, Guassora AD (2016) Sample size in qualitative interview studies: guided by information power. Qualitative Health Research 26(13), 1753-1760.
| Crossref | Google Scholar | PubMed |
McGrath M, Lever S, McCluskey A, Power E (2019) How is sexuality after stroke experienced by stroke survivors and partners of stroke survivors? A systematic review of qualitative studies. Clinical Rehabilitation 33(2), 293-303.
| Crossref | Google Scholar | PubMed |
Morris R, Morris P (2012) Participants’ experiences of hospital-based peer support groups for stroke patients and carers. Disability and Rehabilitation 34(4), 347-354.
| Crossref | Google Scholar | PubMed |
Moss B, Behn N, Northcott S, Monnelly K, Marshall J, Simpson A, Thomas S, McVicker S, Goldsmith K, Flood C, Hilari K (2022) “Loneliness can also kill:” a qualitative exploration of outcomes and experiences of the SUPERB peer-befriending scheme for people with aphasia and their significant others. Disability and Rehabilitation 44(18), 5015-5024.
| Crossref | Google Scholar | PubMed |
Nissen N, Lemche J, Reestorff CM, Schmidt M, Skjerbæk AG, Skovgaard L, Stenager E, Søgaard IG, la Cour K (2022) The lived experience of uncertainty in everyday life with MS. Disability and Rehabilitation 44(20), 5957-5963.
| Crossref | Google Scholar | PubMed |
Pedersen K, Brennan TMH, Nance AD, Rosenbaum ME (2021) Individualized coaching in health system-wide provider communication training. Patient Education and Counseling 104(10), 2400-2405.
| Crossref | Google Scholar | PubMed |
Peel R, Jones S, Miller C, Gibson J (2020) Great expectations? A qualitative study of health professionals’ perspectives on breaking bad news about rehabilitation potential after traumatic brain injury or spinal injury. Disability and Rehabilitation 42, 3209-3214.
| Crossref | Google Scholar | PubMed |
Rixon C (2022) Connection: stories not statistics. Brain Impairment 23, 4-8.
| Crossref | Google Scholar |
Rosewilliam S, Sintler C, Pandyan AD, Skelton J, Roskell CA (2016) Is the practice of goal-setting for patients in acute stroke care patient-centred and what factors influence this? A qualitative study. Clinical Rehabilitation 30(5), 508-519.
| Crossref | Google Scholar | PubMed |
Sandelowski M (2002) Reembodying qualitative inquiry. Qualitative Health Research 12(1), 104-115.
| Crossref | Google Scholar | PubMed |
Satink T, Cup EH, Ilott I, Prins J, de Swart BJ, Nijhuis-van der Sanden MW (2013) Patients’ views on the impact of stroke on their roles and self: a thematic synthesis of qualitative studies. Archives of Physical Medicine and Rehabilitation 94(6), 1171-1183.
| Crossref | Google Scholar | PubMed |
Schmidt J, Ownsworth T (2022) Special issue editorial: the self after brain injury. Neuropsychological Rehabilitation 32(8), 1669-1675.
| Crossref | Google Scholar | PubMed |
Seneviratne CC, Mather CM, Then KL (2009) Understanding nursing on an acute stroke unit: perceptions of space, time and interprofessional practice. Journal of Advanced Nursing 65(9), 1872-1881.
| Crossref | Google Scholar | PubMed |
Shipley J, Luker J, Thijs V, Bernhardt J (2020) How can stroke care be improved for younger service users? A qualitative study on the unmet needs of younger adults in inpatient and outpatient stroke care in Australia. Disability and Rehabilitation 42(12), 1697-1704.
| Crossref | Google Scholar | PubMed |
Soundy A, Smith B, Butler M, Minns Lowe C, Helen D, Winward CH (2010) A qualitative study in neurological physiotherapy and hope: beyond physical improvement. Physiotherapy Theory and Practice 26(2), 79-88.
| Crossref | Google Scholar | PubMed |
Soundy A, Sayers J, Stubbs B, Roskell C (2014) Don’t take my hope away: understanding the patient’s hope in neurological rehabilitation. International Journal of Therapy and Rehabilitation 21(6), 257-258.
| Crossref | Google Scholar |
Suddick KM, Cross V, Vuoskoski P, Stew G, Galvin KT (2019) The acute stroke unit as a meaningful space: the lived experience of healthcare practitioners. Health & Place 57, 12-21.
| Crossref | Google Scholar | PubMed |
Theofanidis D, Gibbon B (2016) Nursing interventions in stroke care delivery: an evidence-based clinical review. Journal of Vascular Nursing 34(4), 144-151.
| Crossref | Google Scholar | PubMed |
Thomson L, Schneider J, Wright N (2013) Developing communities of practice to support the implementation of research into clinical practice. Leadership in Health Services 26(1), 20-33.
| Crossref | Google Scholar |
Wenzel RA, Zgoda EA, St Clair MC, Knecht-Sabres LJ (2021) A qualitative study investigating stroke survivors’ perceptions of their psychosocial needs being met during rehabilitation. The Open Journal of Occupational Therapy 9(2), 1-16.
| Crossref | Google Scholar |
Wray F, Clarke D (2017) Longer-term needs of stroke survivors with communication difficulties living in the community: a systematic review and thematic synthesis of qualitative studies. BMJ Open 7, e017944.
| Crossref | Google Scholar | PubMed |
