Experiences of Dysphagia after Stroke: An Interview Study of Stroke Survivors and Their Informal Caregivers

Eltringham, Sabrina A.; Pownall, Sue; Bray, Ben; Smith, Craig J.; Piercy, Laura; Sage, Karen

doi:10.3390/geriatrics4040067

Cited by 12 publications

(9 citation statements)

References 24 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Role changes were also found in dysphagia caregivers. A few qualitative studies explored the experience of caregivers, and the results were also in line with some evidence found in our study (Eltringham et al, 2019; Lisiecka et al, 2020). One study demonstrated that caregivers of patients with dementia and dysphagia also experienced changes in emotions and roles (Howells et al, 2021).…”

Section: Discussionsupporting

confidence: 92%

“…After careful examination of the full texts, 5 studies were included for further synthesis (Carlsson et al, 2004; Helldén et al, 2018; Kjaersgaard & Pallesen, 2020; Medin et al, 2010; Moloney & Walshe, 2018). Two studies were excluded because they explored the experiences of not only dysphagia patients but also caregivers and other stakeholder groups, and dysphagia experience could not be extracted (Eltringham et al, 2019; Shune & Linville, 2019). The search results and process are illustrated in Figure 1.…”

Section: Methodsmentioning

confidence: 99%

See 1 more Smart Citation

Experiences and perceptions of stroke patients living with dysphagia: A qualitative meta‐synthesis

Qiu

Shi

et al. 2021

Journal of Clinical Nursing

View full text Add to dashboard Cite

Aims To systematically review and synthesise the findings of qualitative research exploring experiences of dysphagia from stroke patients' perspectives. Background Poststroke patients with dysphagia are suffering from impaired physical functions and heavy psychological burden, and they are living with compromised quality of life. Through synthesising qualitative studies to fully portrait the experiences of poststroke patients living with dysphagia, we can care better for this population. Design A systematic review and synthesis of qualitative studies reported by following ENTREQ. Review Methods Five electronic databases (CINAHL, Embase, PubMed, Web of Science and Cochrane Library) and three Chinese databases (CNKI, VIP and Wanfang) were searched from inception until January 2021. Qualitative studies were included if they were related to the experiences of poststroke patients with dysphagia. The Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI‐QARI) was used to appraise study quality. Data were synthesised using the Thomas and Harden method thematic and content analysis. Results Five studies were included in the meta‐synthesis. Four analytical themes were identified: life changes after dysphagia, coping with social events, rebuilding a normal life and limited professional services. Conclusions More attention should be given to psychological health and social interaction in poststroke dysphagia patients. Healthcare professionals, especially nurses, should make joint efforts to provide patients with dysphagia‐related knowledge and long‐term individualised support. To improve the quality of life of dysphagia patients, further research should implement high‐quality interventions based on dysphagia experience and clinical treatment. Relevance to clinical practice These findings outline the changes in poststroke patients with dysphagia. Nurses as the first‐line force, should deliver comprehensive and individualised intervention for managing physiological and psychosocial symptoms of patients.

show abstract

Section: Discussionsupporting

confidence: 92%

Section: Methodsmentioning

confidence: 99%

Experiences and perceptions of stroke patients living with dysphagia: A qualitative meta‐synthesis

Qiu

Shi

et al. 2021

Journal of Clinical Nursing

View full text Add to dashboard Cite

show abstract

“…Swallowing disorders are impairing social life [10] and are facilitating anxiety and depression [11]. Emotional and subjective impact of dysphagia have been described in qualitative investigations [12][13][14], have psychosocial effect on families [15,16], and are impairing life quality [17,18]. Despite this and inclusion of some emotional aspects in recent scores [19], little has been published about a holistic assessment of emotions and family interactions.…”

Section: Introductionmentioning

confidence: 99%

Emotional and Psychological Effects of Dysphagia: Validation of the Jugendwerk Dysphagia Emotion and Family Assessment (JDEFA)

Bushuven¹,

Niebel²,

Huber³

et al. 2021

Dysphagia

View full text Add to dashboard Cite

Introduction Patients suffering from swallowing disorders are experiencing emotional effects like anger, anxiety, and sadness. This may be affecting patient–therapist relation and family functioning. To assess emotional reaction and their influence on family systems, we developed a 55-item questionnaire based on the Atlas of Emotion and the Calgary Family Intervention Model. Methods We recruited more than 160 participants to validate an online survey, namely the Jugendwerk Dysphagia Emotion and Family Assessment Score (JDEFA). Forty-Nine health care workers, patients, and family members completed the survey and provided additional comments regarding interactions of emotions and dysphagia. Analysis was accomplished by non-parametric tests and principal component analyses with Varimax rotation. Additionally, we accomplished a qualitative content analysis taking a phenomenological single-coder approach. Results Analysis revealed a Cronbach’s Alpha of 0.93. Using primary component analyses, justified by a Kaiser–Meyer–Olkin value of 0.81, we identified two main factors (emotion and family). Patients experienced sadness and anger more often than health care providers, whereas family members felt anxiety even more often. Our qualitative analysis revealed 20 themes (7 for anger, 2 enjoyment, 4 sadness, 3 anxiety, 2 disgust, 1 shame, and 1 punishment). Predominantly, the fear of choking was mentioned by patients, whereas professionals reported about the fear of making mistakes. Conclusion The JDEFA is a valid and reliable testing tool for the assessment of swallowing disorders concerning emotional aspects and family functioning. Both factors have a significant role in dysphagia and evaluations should go along with functional assessments and psychological scores for a holistic understanding of swallowing disorders.

show abstract

“…Eltringham et al. (2019) found that even in the early stages, participants’ past–future experiences influenced their emotional responses to events around onset of dysphagia. This suggests that healthcare providers should make a concerted effort to understand the caregivers’ perceptions of their loved‐one's dysphagia in order to provide tailored information and education that addresses issues around health and eating and drinking from a shared viewpoint.…”

Section: Discussionmentioning

confidence: 99%

Family carers’ experiences of dysphagia after a stroke: An exploratory study of spouses living in a large metropolitan city

Robinson

Coxon

McRae

et al. 2022

Intl J Lang & Comm Disor

View full text Add to dashboard Cite

Background: People with post-stroke dysphagia often require informal care from family to facilitate safe swallowing, modify food/drink or administer tubefeeds. Previous survey studies have found dysphagia may increase family caregiver burden. However, the experiences of family members in this population have not been fully explored.Aims: To explore family members' experiences of living with a spouse with poststroke dysphagia. Methods & Procedures:This exploratory qualitative study used one-to-one semi-structured interviews to explore family members' experiences. They were asked open questions about previous eating routines, dysphagia onset, their role and future hopes. Interviews were audio-recorded, transcribed and analysed thematically with an inductive approach to determine key features of family members' experiences.Outcomes & Results: Five spouses aged 70-93 years participated. Their relatives' strokes happened 3 months to 3 years before the interview. Five themes were identified: 'I do all of it'; making sense of dysphagia; emotional responses; reflecting on relationships; and redefining lifestyle. Conclusions & Implications:It is important to consider family members' perspectives as they often provide vital care to loved-ones with dysphagia. In relation to eating and drinking, maintaining elements of previous routines seems important to families. Healthcare professionals should consider these when making recommendations for rehabilitation. Family members have differing perspectives of the comparative impact of dysphagia; patient and family priorities should be explored for healthcare professionals to provide better-targeted support.

show abstract

Experiences of Dysphagia after Stroke: An Interview Study of Stroke Survivors and Their Informal Caregivers

Cited by 12 publications

References 24 publications

Experiences and perceptions of stroke patients living with dysphagia: A qualitative meta‐synthesis

Experiences and perceptions of stroke patients living with dysphagia: A qualitative meta‐synthesis

Emotional and Psychological Effects of Dysphagia: Validation of the Jugendwerk Dysphagia Emotion and Family Assessment (JDEFA)

Family carers’ experiences of dysphagia after a stroke: An exploratory study of spouses living in a large metropolitan city

Contact Info

Product

Resources

About