“I had no idea what a complicated business eating is…”: a qualitative study of the impact of dysphagia during stroke recovery

References

• McMicken BL, Muzzy CL. Prognostic indicators of functional outcomes in first time documented acute stroke patients following standard dysphagia treatment. Disabil Rehabil. 2009;31:2196–2203.
   PubMed Web of Science ®Google Scholar
• Martino R, Foley N, Bhogal S, et al. Dysphagia after stroke: incidence, diagnosis, and pulmonary complications. Stroke. 2005;36:2756–2763.
   PubMed Web of Science ®Google Scholar
• Singh S, Hamdy S. Dysphagia in stroke patients. Postgrad Med J. 2006;82:383–391.
   PubMed Web of Science ®Google Scholar
• Smithard DG, Smeeton NC, Wolfe CDA. Long-term outcome after stroke: does dysphagia matter? Age Ageing. 2006;36:90–94.
   PubMed Web of Science ®Google Scholar
• Arnold M, Liesirova K, Broeg-Morvay A, et al. Dysphagia in acute stroke: incidence, burden and impact on clinical outcome. PLoS One. 2016;11:e0148424.
   PubMed Web of Science ®Google Scholar
• Forster A, Samaras N, Gold G, et al. Oropharyngeal dysphagia in older adults: a review. Eur Geriatr Med. 2011;2:356–362.
   Web of Science ®Google Scholar
• Andersen UT, Beck AM, Kjaersgaard A, et al. Systematic review and evidence based recommendations on texture modified foods and thickened fluids for adults with oropharyngeal dysphagia. e-SPEN J. 2013;8:127–134.
   Google Scholar
• Alshekhlee A, Ranawat N, Syed TU, et al. National Institutes of Health Stroke Scale assists in predicting the need for percutaneous endoscopic gastrostomy tube placement in acute ischemic stroke. J Stroke Cerebrovasc Dis. 2010;19:347–352.
   PubMed Web of Science ®Google Scholar
• Ayres A, Pereira Jotz GP, de Mello Rieder CR, et al. The impact of dysphagia therapy on quality of life in patients with Parkinson’s Disease as Measured by the Swallowing Quality of Life Questionnaire (SWALQOL). Int Arch Otorhinolaryngol. 2016;20:202–206.
   PubMedGoogle Scholar
• Da Costa Franceschini A, Mourão LF. Dysarthria and dysphagia in amyotrophic lateral sclerosis with spinal onset: a study of quality of life related to swallowing. Neuro Rehabil. 2015;36:127–134.
   Google Scholar
• Ganzer H, Touger-Decker R, Byham-Gray L, et al. The eating experience after treatment for head and neck cancer: a review of the literature. Oral Oncol. 2015;51:634–642.
   PubMed Web of Science ®Google Scholar
• Nund RL, Ward EC, Scarinci NA, et al. Carers’ experiences of dysphagia in people treated for head and neck cancer: a qualitative study. Dysphagia. 2014;29:450–458.
   PubMed Web of Science ®Google Scholar
• Sullivan M. The new subjective medicine: taking the patient’s point of view on health care and health. Soc Sci Med. 2003;56:1595–1604.
   PubMed Web of Science ®Google Scholar
• Luker J, Lynch E, Bernhardsson S, et al. Stroke survivor’s experiences of physical rehabilitation: a systematic review of qualitative studies. Arch Phys Med Rehabil. 2015;96:1698–1708.
   PubMed Web of Science ®Google Scholar
• National Institute for Health and Care Excellence. 2008. Stroke and transient ischaemic attack in over 16s: diagnosis and initial management [cited 2016 May 10]. Available from: https://www.nice.org.uk/guidance/cg68/chapter/About-this-guideline
   Google Scholar
• McHorney CA, Robbins J, Lomax K, et al. The SWAL-QOL and SWAL-CARE outcomes tool for oropharyngeal dysphagia in adults: III. Documentation of reliability and validity. Dysphagia. 2002;17:97–114.
   PubMed Web of Science ®Google Scholar
• Belafsky PC, Mouadeb DA, Rees CJ, et al. Validity and reliability of the Eating Assessment Tool (EAT-10). Ann Otol Rhinol Laryngol. 2008;117:919–924.
   PubMed Web of Science ®Google Scholar
• Keague M, Delatycki M, Corben L, et al. A systematic review of self-reported swallowing assessments in progressive neurological disorders. Dysphagia. 2015;30:27–46.
   PubMed Web of Science ®Google Scholar
• Ware JE, Gandek B, Guyer R, etet al. Standardizing disease-specific quality of life measures across multiple chronic conditions: development and initial evaluation of the QOL Disease Impact Scale (QDIS). Health Qual Life Outc. 2016;14:84.
   PubMed Web of Science ®Google Scholar
• Klinke M, Wilson M, Hafsteinsdóttir TB, et al. Recognizing new perspectives in eating difficulties following stroke: a concept analysis. Disabil Rehabil. 2013;35:1491–1500.
   PubMed Web of Science ®Google Scholar
• Norcross JC, Sommer R, Clifford JS. Incorporating published autobiographies into the abnormal psychology course. PLoS One. 2011;28:125–128.
   Google Scholar
• Mathibe LJ, Esterhuizen TM, Motsoeneng MP, et al. Using a popular autobiography as a teaching tool: medical students’ perceptions. Med Teach. 2008;30:726.
   PubMed Web of Science ®Google Scholar
• van Manen M. Researching lived experience: human science for an action sensitive pedagogy. 2nd ed. London (ON): The Althouse Press; 1997.
   Google Scholar
• Power T, Jackson D, Weaver R, et al. Autobiography as genre for qualitative data: a reservoir of experience for nursing research. Collegian. 2012;19:39–43.
   PubMed Web of Science ®Google Scholar
• Mathias BD, Smith A. Autobiographies in organizational research: using leader’s life stories in triangulated research design. Organ Res Meth. 2016;19:204–230.
   Web of Science ®Google Scholar
• Tuohy D, Cooney A, Dowling M, et al. An overview of interpretive phenomenology as a research methodology. Nurse Res. 2013;20:17–20.
   PubMedGoogle Scholar
• Mackey S. Phenomenological nursing research: methodological insights derived from Heidegger’s interpretive phenomenology. Int J Nurs Stud. 2005;42:179–186.
   PubMed Web of Science ®Google Scholar
• Jacobsson C, Axelsson K, Olov Osterline Oe Sterlind P, et al. How people with stroke and healthy older people experience the eating process. J Clin Nurs. 2000;9:255–264.
   PubMed Web of Science ®Google Scholar
• Carlsson E, Ehrenberg A, Ehnfors M. Stroke and eating difficulties: long-term experiences. J Clin Nurs. 2004;13:825–834.
   PubMed Web of Science ®Google Scholar
• Farri A, Accornero A, Brudese C. Social importance of dysphagia: its impact on diagnosis and therapy. Acta Otorhinolaryngol Ital. 2007;27:83–86.
   PubMedGoogle Scholar
• Ekberg O, Hamdy S, Woisard V, et al. Social and psychological burden of dysphagia: Its impact on diagnosis and treatment. Dysphagia. 2002;17:139–146.
   PubMed Web of Science ®Google Scholar
• Timmerman AA, e Speyer R, Heijnen BJ, et al. Psychometric characteristics of health-related quality-of-life questionnaires in oropharyngeal dysphagia. Dysphagia. 2014;29:183–198.
   PubMed Web of Science ®Google Scholar
• Northcott S, Moss B, Harrison K, et al. A systematic review of the impact of stroke on social support and social networks: associated factors and patterns of change. Clin Rehabil. 2016;30:811–831.
   PubMed Web of Science ®Google Scholar
• Wood J. ‘Getting back to real living’: a qualitative study of the process of community reintegration after stroke. Clin Rehabil. 2010;24:1045–1056.
   PubMed Web of Science ®Google Scholar
• Perry L, McLaren S. Coping and adaptation at six months after stroke: experiences with eating disabilities. Int J Nurs Stud. 2003;40:185–195.
   PubMed Web of Science ®Google Scholar
• Rosewilliam S, Sintler C, Pandyan AD, et al. Is the practice of goal-setting for patients in acute stroke care patient-centred and what factors influence this? A qualitative study. Clin Rehabil. 2016;30:508–519.
   PubMed Web of Science ®Google Scholar
• Proot IM, Abu-Saad HH, de Esch-Janssen WP, et al. Patient autonomy during rehabilitation: the experiences of stroke patients in nursing homes. Int J Nurs Stud. 2000;37:267–276.
   PubMed Web of Science ®Google Scholar
• Medin J, Larson J, von Arbin M, et al. Elderly persons’ experience and management of eating situations 6 months after stroke. Disabil Rehabil. 2010;32:1346–1353.
   PubMed Web of Science ®Google Scholar