Aphasia disrupts usual care: “I’m not mad, I’m not deaf” – the experiences of individuals with aphasia and family members in hospital

References

• Australian Commission on Safety and Quality in Health Care (ACSQHC). Patient-centred care: improving quality and safety through partnerships with patients and consumers. Sydney, Australia; 2011.
   Google Scholar
• Eklund JH, Holmström IK, Kumlin T, et al. “Same same or different?” A review of reviews of person-centered and patient-centered care. Patient Educ Couns. 2019;102(1):3–11. doi:10.1016/j.pec.2018.08.029.
   PubMed Web of Science ®Google Scholar
• Institute of Medicine. Crossing the quality chasm: a new health system for the 21st century: a new health system for the 21st century. USA: National Academies Press; 2001. http://ebookcentral.proquest.com/lib/latrobe/detail.action?docID=3375215.
   Google Scholar
• National Health Service. Creating a patient­led NHS – delivering the NHS improvement plan. UK: NHS Confederation Briefing; 2005.
   Google Scholar
• US Department of Health and Human Services. Personalized health care: pioneers, partnerships, progress. Washington (DC): US Department of Health and Human Services; 2008.
   Google Scholar
• Davis K, Schoenbaum SC, Audet A. A 2020 vision of patient-centred primary care. J Gen Intern Med. 2005;20(10):953–957. doi:10.1111/j.1525-1497.2005.0178.x.
   PubMed Web of Science ®Google Scholar
• Robinson JH, Callister LC, Berry JA, et al. Patient-centered care and adherence: definitions and applications to improve outcomes. J Am Acad Nurse Pract. 2008;20(12):600–607. doi:10.1111/j.1745-7599.2008.00360.x.
   PubMed Web of Science ®Google Scholar
• Bensing JM, Verhaak PFM, van Dulmen AM, et al. Communication: the royal pathway to patient-centered medicine. Patient Educ Couns. 2000;39(1):1–3. doi:10.1016/S0738-3991(99)00107-X.
   PubMed Web of Science ®Google Scholar
• Kitson A, Marshall A, Bassett K, et al. What are the core elements of patient-centred care? A narrative review and synthesis of the literature from health policy, medicine and nursing: core elements of patient-centred care. J Adv Nurs. 2013;69(1):4–15. doi:10.1111/j.1365-2648.2012.06064.x.
   PubMed Web of Science ®Google Scholar
• McCormack B, McCance T. Development of a framework for person-centred nursing. J Adv Nurs. 2006;56(5):472–479. doi:10.1111/j.1365-2648.2006.04042.x.
   PubMed Web of Science ®Google Scholar
• Picker Institute. Eight dimensions of patient-centred care. UK: PIcker Institute; 2008.
   Google Scholar
• DiMatteo MR, Taranta A, Friedman HS, et al. Predicting patient satisfaction from physicians’ nonverbal communication skills. Med Care. 1980;18(4):376–387. doi:10.1097/00005650-198004000-00003.
   PubMed Web of Science ®Google Scholar
• Jackson JL, Chamberlin J, Kroenke K. Predictors of patient satisfaction. Soc Sci Med. 2001;52(4):609–620. doi:10.1016/S0277-9536(00)00164-7.
   PubMed Web of Science ®Google Scholar
• Lee S, Groß SE, Pfaff H, et al. Waiting time, communication quality, and patient satisfaction: an analysis of moderating influences on the relationship between perceived waiting time and the satisfaction of breast cancer patients during their inpatient stay. Patient Educ Couns. 2020;103(4):819–825. doi:10.1016/j.pec.2019.11.018.
   PubMed Web of Science ®Google Scholar
• Burgener AM. Enhancing communication to improve patient safety and to increase patient satisfaction. Health Care Manag (Frederick). 2020;39(3):128–132. doi:10.1097/HCM.0000000000000165.
   PubMed Web of Science ®Google Scholar
• Leonard M, Graham S, Bonacum D. The human factor: the critical importance of effective teamwork and communication in providing safe care. Qual Saf Health Care. 2004;13(suppl_1):i85–i90. doi:10.1136/qshc.2004.010033.
   PubMedGoogle Scholar
• Street RL, Makoul G, Arora NK, et al. How does communication heal? Pathways linking clinician–patient communication to health outcomes. Patient Educ Couns. 2009;74(3):295–301. doi:10.1016/j.pec.2008.11.015.
   PubMed Web of Science ®Google Scholar
• Australian Commission on Safety and Quality in Health Care (ACSQHC). Sydney (Australia): National Safety and Quality Health Service Standards; 2017.
   Google Scholar
• Patak L, Wilson-Stronks A, Costello J, et al. Improving patient-Provider communication: a call to action. J Nurs Adm. 2009;39(9):372–376. doi:10.1097/NNA.0b013e3181b414ca.
   PubMed Web of Science ®Google Scholar
• The Joint Commission. Advancing effective communication, cultural competence, and patient-and family-centered care: a roadmap for hospitals. United States: The Joint Commission.
   Google Scholar
• Hemsley B, Balandin S, Togher L. Creating a communicative environment in hospital for adults with developmental disability and complex communication needs. ACQuiring Knowledge in Speech, Language & Hearing. 2010;12(3):108–111.
   Google Scholar
• Murphy J. Perceptions of communication between people with communication disability and general practice staff. Health Expect. 2006;9(1):49–59. doi:10.1111/j.1369-7625.2006.00366.x.
   PubMed Web of Science ®Google Scholar
• O’Halloran R, Worrall L, Hickson L. Stroke patients communicating their healthcare needs in hospital: a study within the ICF framework. Int J Lang Commun Disord. 2012;47(2):130–143. doi:10.1111/j.1460-6984.2011.00077.x.
   PubMed Web of Science ®Google Scholar
• Stransky ML, Jensen KM, Morris M. Adults with communication disabilities experience poorer health and healthcare outcomes compared to persons without communication disabilities. J Gen Intern Med. 2018;33(12):2147–2155. doi:10.1007/s11606-018-4625-1.
   PubMed Web of Science ®Google Scholar
• Bartlett G, Blais R, Tamblyn R, et al. Impact of patient communication problems on the risk of preventable adverse events in acute care settings. CMAJ. 2008;178(12):1555–1562. doi:10.1503/cmaj.070690.
   PubMed Web of Science ®Google Scholar
• Flowers HLP, Skoretz SAP, Silver FLMD, et al. Poststroke aphasia frequency, recovery, and outcomes: a systematic review and meta-analysis. Arch Phys Med Rehabil. 2015;97(12):2188–2201.e8. doi:10.1016/j.apmr.2016.03.006.
   Web of Science ®Google Scholar
• Manning M, MacFarlane A, Hickey A, et al. Perspectives of people with aphasia post-stroke towards personal recovery and living successfully: a systematic review and thematic synthesis. PLoS One. 2019;14(3):e0214200-e0214200. doi:10.1371/journal.pone.0214200.
   Web of Science ®Google Scholar
• van Rijssen M, Isaksen J, Vandenborre D, et al. Ways to improve communication and support in healthcare centres according to people with aphasia and their relatives: a Dutch perspective. Aphasiology. 2021;37(1):69–82. doi:10.1080/02687038.2021.1988505.
   Web of Science ®Google Scholar
• Tomkins B, Siyambalapitiya S, Worrall L. What do people with aphasia think about their health care? Factors influencing satisfaction and dissatisfaction. Aphasiology. 2013;27(8):972–991. doi:10.1080/02687038.2013.811211.
   Web of Science ®Google Scholar
• Chan EA, Jones A, Fung S, et al. Nurses’ perception of time availability in patient communication in Hong Kong. J Clin Nurs. 2011;21(7–8):1168–1177. doi:10.1111/j.1365-2702.2011.03841.x.
   PubMed Web of Science ®Google Scholar
• Carragher M, Steel G, O’Halloran R, et al. Aphasia disrupts usual care: the stroke team’s perceptions of delivering healthcare to patients with aphasia. Disabil Rehabil. 2020;43(21):3003–3014. doi:10.1080/09638288.2020.1722264.
   PubMed Web of Science ®Google Scholar
• van Rijssen MN, Veldkamp M, Bryon E, et al. How do healthcare professionals experience communication with people with aphasia and what content should communication partner training entail? Disabil Rehabil. 2022;44(14):3671–3678. doi:10.1080/09638288.2021.1878561.
   PubMed Web of Science ®Google Scholar
• Bright FAS, Reeves B. Creating therapeutic relationships through communication: a qualitative metasynthesis from the perspectives of people with communication impairment after stroke. Disabil Rehabil. 2022;44(12):2670–2682. doi:10.1080/09638288.2020.1849419.
   PubMed Web of Science ®Google Scholar
• Gordon C, Ellis-Hill C, Ashburn A. The use of conversational analysis: nurse-patient interaction in communication disability after stroke. J Adv Nurs. 2009;65(3):544–553. doi:10.1111/j.1365-2648.2008.04917.x.
   PubMed Web of Science ®Google Scholar
• O’Halloran R, Worrall L, Hickson L. Environmental factors that influence communciation between patients and their healthcare providers in acute hospital stroke units: an observational study. Int J Lang Commun Disord. 2011;46(1):30–47. doi:10.3109/13682821003660380.
   PubMed Web of Science ®Google Scholar
• Hersh D, Godecke E, Armstrong E, et al. “Ward talk”: nurse’ interaction with people with and without aphasia in the very early period poststroke. Aphasiology. 2016;30(5):609–628. doi:10.1080/02687038.2014.933520.
   Web of Science ®Google Scholar
• Elko S, Velez JA, Corwin M, et al. Rethinking patient–provider care through visual communication. Visual Communication. 2020;21(1):176–192. doi:10.1177/1470357220915605.
   Web of Science ®Google Scholar
• Smith S. Hospital Talk (Version 1.1). 2016. https://itunes.apple.com/au/app/hospital-talk/id1131978841?mt=8.
   Google Scholar
• Strubbia C, Levack WMM, Grainger R, et al. Use of an iPad app (aid for decision-making in occupational choice) for collaborative goal setting in interprofessional rehabilitation: qualitative descriptive study. JMIR Rehabil Assist Technol. 2021;8(4):e33027. doi:10.2196/33027.
   PubMedGoogle Scholar
• Sharpe B, Hemsley B. Improving nurse–patient communication with patients with communication impairments: hospital nurses’ views on the feasibility of using mobile communication technologies. Appl Nurs Res. 2016;30:228–236. doi:10.1016/j.apnr.2015.11.012.
   PubMed Web of Science ®Google Scholar
• Asadzadeh A, Kalankesh LR. A scope of mobile health solutions in COVID-19 pandemics. Inform Med Unlocked. 2021;23:100558. doi:10.1016/j.imu.2021.100558.
   PubMedGoogle Scholar
• Marcolino MS, Oliveira JAQ, D’Agostino M, et al. The impact of mHealth interventions: systematic review of systematic reviews. JMIR Mhealth Uhealth. 2018;6(1):e23. doi:10.2196/mhealth.8873.
   PubMed Web of Science ®Google Scholar
• Crotty MJ. The foundations of social research. 1st ed. Thousand Oaks: SAGE Publications Ltd.; 1998.
   Google Scholar
• Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–357. doi:10.1093/intqhc/mzm042.
   PubMed Web of Science ®Google Scholar
• Brennan A, Worrall L, McKenna K. The relationship between specific features of aphasia-friendly written material and comprehension of written material for people with aphasia: an exploratory study. Aphasiology. 2005;19(8):693–711. doi:10.1080/02687030444000958.
   Web of Science ®Google Scholar
• Rose T, Worrall L, McKenna K. The effectiveness of aphasia-friendly principles for printed health education materials for people with aphasia following stroke. Aphasiology. 2003;17(10):947–963. doi:10.1080/02687030344000319.
   Web of Science ®Google Scholar
• Rose TA, Worrall LE, Hickson LM, et al. Aphasia friendly written health information: content and design characteristics. Int J Speech Lang Pathol. 2011;13(4):335–347. doi:10.3109/17549507.2011.560396.
   PubMed Web of Science ®Google Scholar
• Kagan A. Supported conversation for adults with aphasia: methods and resources for training conversation partners. Aphasiology. 1998;12(9):816–830. doi:10.1080/02687039808249575.
   Web of Science ®Google Scholar
• Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology,. 2006;3(2):77–101. doi:10.1191/1478088706qp063oa.
   Google Scholar
• Patton MQ. Qualitative evaluation and research methods. 2nd ed. Newbury Park (CA): Sage; 1990.
   Google Scholar
• Lincoln YS, Guba EG. 1985. Naturalistic inquiry. Thousand Oaks: Sage Publications.
   Google Scholar
• Braun V, Clarke V. Thematic analysis. In: Cooper H, Camic PM, Long DL, et al, editors. APA handbook of research methods in psychology, Vol. 2. Research designs: quantitative, qualitative, neuropsychological, and biological. Washington (DC): American Psychological Association; 2012. p. 57–71.
   Google Scholar
• Clancy L, Povey R, Rodham K. “Living in a foreign country”: experiences of staff–patient communication in inpatient stroke settings for people with post-stroke aphasia and those supporting them. Disabil Rehabil. 2018;42(3):324–334. doi:10.1080/09638288.2018.1497716.
   PubMed Web of Science ®Google Scholar
• Hemsley B, Werninck M, Worrall L. “That really shouldn’t have happened”: people with aphasia and their spouses narrate adverse events in hospital. Aphasiology. 2013;27(6):706–722. doi:10.1080/02687038.2012.748181.
   Web of Science ®Google Scholar
• Ha JH, Longnecker N. Doctor-patient communication: a review. Ochsner J. 2010;10:38–43.
   PubMedGoogle Scholar
• Cheng BBY, Ryan BJ, Copland DA, et al. Prognostication in post-stroke aphasia: perspectives of people with aphasia on receiving information about recovery. Neuropsychol Rehabil. 2022;33(5):871–902. doi:10.1080/09602011.2022.2051565.
   PubMed Web of Science ®Google Scholar
• Cheng BBY, Worrall L, Copland DA, et al. Prognostication in post-stroke aphasia: how do speech pathologists formulate and deliver information about recovery? Int J Lang Commun Disord. 2020;55(4):520–536. doi:10.1111/1460-6984.12534.
   PubMed Web of Science ®Google Scholar
• Sinkfield-Morey T. How using the term ‘non-compliant’ keeps providers from partnering with patients. Creative Nursing. 2018;24(3):178–185. doi:10.1891/1946-6560.24.3.178.
   PubMedGoogle Scholar
• Foster A, Worrall L, Rose M, et al. ‘I do the best I can’: an in-depth exploration of the aphasia management pathway in the acute hospital setting. Disabil Rehabil. 2016;38(18):1765–1779. doi:10.3109/09638288.2015.1107766.
   PubMed Web of Science ®Google Scholar
• McCooey-O’Halloran R, Worrall L, Hickson L. Evaluating the role of speech-language pathology with patients with communication disability in the acute care hospital setting using the ICF. J Med Speech-Language Pathol. 2004;12(2):49–58.
   Google Scholar
• O’Halloran R, Grohn B, Worrall L. Environmental factors that influence communication for patients with a communication disability in acute hospital stroke units: a qualitative metasynthesis. Arch Phys Med Rehabil. 2012;93(1 Suppl):S77–S85. doi:10.1016/j.apmr.2011.06.039.
   PubMed Web of Science ®Google Scholar
• Burns M, Baylor C, Dudgeon B, et al. Asking the stakeholders: perspectives of individuals with aphasia, their family members, and physicians regarding communication in medical interactions. Am J Speech Lang Pathol. 2015;24(3):341–357. doi:10.1044/2015_AJSLP-14-0051.
   PubMed Web of Science ®Google Scholar
• Sundin K, Jansson L. Understanding and being understood’ as a creative caring phenomenon - in care of patients with stroke and aphasia. J Clin Nurs. 2003;12(1):107–116. doi:10.1046/j.1365-2702.2003.00676.x.
   PubMed Web of Science ®Google Scholar
• Pound C, Duchan J, Penman T, et al. Communication access to organisations: inclusionary practices for people with aphasia. Aphasiology. 2007;21(1):23–38. doi:10.1080/02687030600798212.
   Web of Science ®Google Scholar
• Pound C, Jensen LR. Humanising communication between nursing staff and patients with aphasia: potential contributions of the humanisation values framework. Aphasiology. 2018;32(10):1225–1249. doi:10.1080/02687038.2018.1494817.
   Web of Science ®Google Scholar
• Todres L, Galvin KT, Holloway I. The humanization of healthcare: a value framework for qualitative research. Int J Qual Stud Health Well-Being. 2009;4(2):68–77. doi:10.1080/17482620802646204.
   Web of Science ®Google Scholar
• Hemsley B, Steel J, Worrall L, et al. A systematic review of falls in hospital for patients with communication disability: highlighting an invisible population. J Safety Res. 2019;68:89–105. doi:10.1016/j.jsr.2018.11.004.
   PubMed Web of Science ®Google Scholar
• Sullivan R, Harding K. Do patients with severe post-stroke communication difficulties have a higher incidence of falls during inpatient rehabilitation? A retrospective cohort study. Top Stroke Rehabil. 2019;26(4):288–293. doi:10.1080/10749357.2019.1591689.
   PubMed Web of Science ®Google Scholar
• Roter DL, Hall JA. 2006). Doctors talking with patients/patients talking with doctors. 2nd ed. Westport (CT): Praeger.
   Google Scholar
• O’Halloran R, Worrall L, Toffolo D, et al. Inpatient functional communication interview: screening, assessment and intervention. San Diego: Plural Publishing Inc.; 2019.
   Google Scholar
• Hemsley B, Balandin S. A metasynthesis of patient-provider communication in hospital for patients with severe communication disabilities: informing new translational research. Augment Altern Commun. 2014;30(4):329–343. doi:10.3109/07434618.2014.955614.
   PubMed Web of Science ®Google Scholar