Experience Of Dysphagia Research Articles

Iatrogenic left common carotid artery to right internal jugular vein arteriovenous fistula.

A 47-year-old female patient presented with a palpable right-sided neck thrill, dyspnea, and dysphagia 14 days after discharge from a 102-day hospitalization for COVID-19 pneumonia. Computed tomography angiography (CTA) of the neck demonstrated an unusual left common carotid artery to right internal jugular vein (IJV) arteriovenous fistula (AVF) with aneurysmal dilatation of the fistulous tract of up to 2.8 cm, causing mass effect on the proximal trachea and esophagus, which led to her experience of dysphagia and palpable thrill.

Patient Reported Outcome Measures in Dysphagia Research Following Stroke: A Scoping Review and Qualitative Analysis

Patient reported outcome measures (PROMs) are commonly used to evaluate the impact of a health condition on quality of life (QOL). This study aimed to identify the range of PROMs that are currently in common use in clinical trials in dysphagia following stroke and to qualitatively analyse these PROMs by mapping the content to both the International Classification of Functioning and Disability Framework (ICF) and the Core Outcome Measures in Effectiveness Trials (COMET) Taxonomy for outcome classification. With consideration for the PRISMA-ScR checklist, a scoping review was conducted to identify commonly used PROMs in randomised controlled trials reported in persons with dysphagia stroke. A search of five databases was conducted. Studies were excluded if they included pediatric participants i.e. < 18 years of age, or if the text was not available in the English language. 110 papers met the inclusionary criteria. Twelve of these 110 papers included a dysphagia PROM. Two PROMs were identified as being in common use—the SWAL-QOL and the EAT-10. These two tools consisted of 47 items and 78 meaningful concepts, which were subsequently mapped to the ICF and the COMET Taxonomy. Mapping to the ICF showed that neither tool directly assessed the impact of ‘Environmental Factors’ on the experience of dysphagia. Mapping to the COMET Taxonomy showed that neither tool considered the impact of ‘Role Functioning’ on the person’s experience of dysphagia. The development of a suitable and appropriate patient-reported assessment tool for use in those with dysphagia following stroke is warranted.

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

People with post-stroke dysphagia often require informal care from family to facilitate safe swallowing, modify food/drink or administer tube-feeds. 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. To explore family members' experiences of living with a spouse with post-stroke dysphagia. 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. 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. 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. What is already known on the subject Informal caregivers, often spouses, play a vital role in supporting the health and well-being of older people with health conditions. The presence of post-stroke dysphagia may present increased challenges for the informal caregiver. There are limited studies qualitatively exploring the experiences of informal caregivers in this population. What this paper adds to existing knowledge Current health and social care provision for this population leaves informal caregivers feeling they have been left to manage dysphagia alone. Informal caregivers demonstrate a breadth of knowledge about their spouse's dysphagia, problem-solving effective solutions. Informal caregivers have a range of interpretations of the nature and cause of dysphagia; leading to miscommunication with health professionals and complex emotional responses. What are the potential or actual clinical implications of this work? Healthcare professionals might consider ways in which to support dysphagic patients' families later in their care pathway, through scheduling reviews or running dysphagia patient and family groups. Health and social care professionals and policymakers should learn from informal caregivers' expertise to promote better health and quality-of-life outcomes for the patient and caregiver. Equal, open conversations between health and social care professionals and patients/families on their understanding of dysphagia may help informal caregivers to better voice their concerns and support mutual understanding. This has implications for adherence to recommendations, psychological well-being and patient safety.

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

To systematically review and synthesise the findings of qualitative research exploring experiences of dysphagia from stroke patients' perspectives. 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. A systematic review and synthesis of qualitative studies reported by following ENTREQ. 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. 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. 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. 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.

How do people with Motor Neurone Disease experience dysphagia? A qualitative investigation of personal experiences

Introduction Motor Neurone Disease is a rapidly progressing, fatal and relatively rare neurodegenerative disease of unknown etiology. People diagnosed with Motor Neurone Disease develop a range of symptoms including dysphagia (swallowing impairments). Although generally recognized to cause serious medical and psycho-social consequences, little is known how this population experiences dysphagia. Aim To investigate the experiences of dysphagia from the perspective of people diagnosed with Motor Neurone Disease. Method This study employed Interpretative Phenomenological Analysis to investigate the experiences of dysphagia in ten people with Motor Neurone Disease who participated in individual, multiple interviews (n = 44) and meal-time observations. Results Participants’ experiences of dysphagia were inseparable from their broader experience of Motor Neurone Disease. Apart from specific circumstances and when dysphagia was severe, dysphagia was not experienced as a constant issue for participants. Participants reported a changed perception of food and fear of choking. They generally aimed to manage dysphagia independently rather than seeking professional help and employed strategies such as choosing easy to swallow foods and limiting mealtime distractions. Conclusion This study provides a unique contribution in advancing our understanding of dysphagia in Motor Neurone Disease. Professionals need to view dysphagia within the disease as a whole, and recognize personal values, preferences and coping strategies of people with Motor Neurone Disease, in the management of dysphagia. IMPLICATIONS FOR REHABILITATION Recognizing the experiences of dysphagia in Motor Neurone Disease contributes to provision of patient-centred care. Professional services for dysphagia should consider the overall experience of living with Motor Neurone Disease rather than focusing on dysphagia alone. Some people with Motor Neurone Disease wish to manage dysphagia alone. Research and intervention should focus on how to support people with Motor Neurone Disease in doing so. Although dysphagia causes multiple consequences in Motor Neurone Disease it may not be perceived as a constant issue by people with Motor Neurone Disease. Communication impairment may be a bigger concern than dysphagia for some people with Motor Neurone Disease.

Psychiatric Co-morbidities Among Patients of Globus Pharyngeus Attending Psychiatry Clinic of a Teaching Hospital

Introduction: Globus sensation is described as a constant feeling of a lump, something stuck or foreign body in the throat associated with an uncomfortable experience of dysphagia or choking. It is a common complaint in Ear, Nose and Throat clinics. The symptom is considered functional when no apparent organic cause is detected. In that case the symptoms must be positively identified as psychologically related to some underlying mental conflict or need. The objective of this study is to evaluate the occurrence of psychiatric Co-morbidities in patients complaining of globus sensation in throat coming to psychiatric clinic.&#x0D; Material and Method: A case-control study was done. Patients coming to Outpatient of psychiatry OPD which were referred from Ear, Nose and Throat Department of Lumbini Medical College Teaching Hospital with complain of globus and not having an organic explanation of the condition were included. Age, sex and socio-economic condition matched control group was selected from healthy visitors (1st degree relatives). Mini International Neuropsychiatric Interview, English version; 5.0.0.,HAM-D/HAM-A, were applied to rule out depression, anxiety and assess psychiatric co-morbidities. Final ICD-10 Criteria were done for diagnosis which were made from two psychiatrists.&#x0D; Results: About 64.28 % (n=45) of globus patients had psychiatric co-morbidities which was significantly higher (p&lt;0.0151, odds ratio 0.46) than their relatives attending with the patients. Major depressive disorder was found in 25.71% (n=18), Anxiety disorder in 22.85% (n=16), Undifferentiated somatoform disorder in 7.14 % (n=5), Dysthymia each in 7.14% (n=5), Psychosis in 1.4% (n=1), Personality Disorder in 1.4 % (n=1).&#x0D; Conclusion: Burden of psychiatric co-morbidities among the patients of globus is quiet high. So, the patient who present with Globus should undergo psychiatric evaluation after organic causes have been ruled out. They should be regularly screened for psychiatric illness and an integrated treatment approach can be taken for them.

Experiences of living with persisting post-stroke dysphagia and of dysphagia management – a qualitative study

ABSTRACTPurpose: The aim of this study was to investigate people’s experiences of living with dysphagia after stroke, and their experiences of dysphagia management.Methods: The study design was qualitative, and an open-ended approach to data collection was used, with follow-up probing questions to gain more information as needed. Personal interviews were conducted with five persons who had persisting moderate to severe dysphagia after stroke, living in the south-west part of Sweden. The data were analysed with qualitative content analysis.Results: When analysing the data, the following theme emerged; “Dysphagia impacts life situations negatively and requires individually adapted, long term support from skilled health care professionals”. The theme consists of three categories: “Learning to manage dysphagia and its complications”, “Professional support with dysphagia varies” and “Finding small moments of joy despite large restrictions in life situations”.Conclusions: Findings indicated that people with dysphagia experienced a lack of support from health care professionals. Better health care support following discharge from hospital is required to ensure an optimal quality of life. Actions to achieve this may include developing national guidelines for adequate dysphagia follow-up and establishing multidisciplinary dysphagia teams in hospitals and long-term care facilities.

The life experience of nutrition impact symptoms during treatment for head and neck cancer patients: a systematic review and meta-synthesis.

In the literature, there is limited research about the changed meaning of food, the eating and the eating experience during treatment in patients with head and neck cancer. This systematic review includes findings from a qualitative research synthesis to gain a deeper understanding of the influence and experiences of dysphagia, dysgeusia, oral mucositis and xerostomia in head and neck cancer patients (HNC) and suggests recommendations for care practice. A systematic review and meta-synthesis techniques were adopted to identify, appraise and synthesize the relevant literature regarding the experience of nutritional symptoms of HNC patients conducted according to the PRISMA guidelines. Several electronic databases such as PubMed, CINAHL, Scopus, PsycINFO and the Cochrane Library databases were searched. A systematic search yielded 121 papers, of which 12 met the inclusion criteria. A thematic account of shared nutritional symptom experiences reported across studies is highlighted and presented. Eight major themes covering three key supportive care domains were identified: impact of symptoms (symptoms during treatment, symptoms working together, affecting daily living activities and physical changes, symptoms and food changes), changing social networks and support (social life restrictions, support of peers), nutritional concerns and strategies (coping strategies, professional support). Dysphagia, dysgeusia, oral mucositis and xerostomia negatively affected the patients' quality of life throughout the period of treatment. The patients' nutritional symptom experiences do not occur in isolation. Therefore, acknowledging the patients' eating difficulties and challenges can guarantee appropriate management and support to best manage symptoms in a timely manner.

Effects of a self-care education program on quality of life of patients with gastric cancer after gastrectomy.

Gastrectomy affects different aspects of functionality and impacts on the quality of life (QoL) of patients with gastric cancer. The importance of appropriate assessment of QoL in cancer patients is well established, yet strategies that help improve this important patient outcome are relatively scarce. To examine the effectiveness of a brief self-care education program to improve QoL of gastric cancer patients after gastrectomy. Using a randomized controlled trial, 59 patients with gastric cancer and candidate for gastrectomy were randomly assigned either to an intervention group (n = 31) to participate in a brief self-care education program or to a usual-care group (n = 28). Data were collected on patient demographics, and QoL was measured by the QLQ-C30 and the QLQ-STO22 at baseline and 1 month after gastrectomy. There were no statistically significant between-group differences in any subscales of the QLQ-C30 and the QLQ-STO22. However, participants in the brief self-care education program showed significant improvements from baseline in the global health status-QoL scale (t = 2.243, 𝘗 < .05), experience of pain (t = 2.508, 𝘗 < .05), constipation (t = 2.773, 𝘗 < .05), and the experience of dysphagia at the follow-up assessment. This study is likely to be underpowered to show differences between the groups. A brief self-care education program was not sufficient to significantly improve the quality of life patients with gastric cancer after gastrectomy.

Carers' experiences of dysphagia in people treated for head and neck cancer: a qualitative study.

The implication of dysphagia for people treated nonsurgically for head and neck cancer (HNC) and its detrimental effects on functioning and quality of life has been well documented. To date, however, there has been a paucity of research on the effects of dysphagia following HNC on carers, independent of the consequences of a gastrostomy. The objective of this qualitative study was to report on the experiences of carers of people with dysphagia (non-gastrostomy dependent) following nonsurgical treatment for HNC and to identify the support needs of this group. A purposive, maximum-variation sampling technique was adopted to recruit 12 carers of people treated curatively for HNC since 2007. Each participated in an in-depth interview, detailing their experience of caring for someone with dysphagia and the associated impact on their life. Thematic analysis was adopted to search the transcripts for key phases and themes that emerged from the discussions. Analysis of the transcripts revealed four themes: (1) dysphagia disrupts daily life, (2) carers make adjustments to adapt to their partner's dysphagia, (3) the disconnect between carers' expectations and the reality of dysphagia, and (4) experiences of dysphagia-related services and informal supports. Carers generally felt ill-prepared for their role in dysphagia management. The qualitative methodology successfully described the impact of dysphagia on the everyday lives of carers, particularly in regard to meal preparation, social events, and family lifestyle. Clinicians should provide adequate and timely training and support to carers and view carers as copartners in dysphagia management.

Book Reviews

This practical, spiral-bound book is a popular and useful text, written by a speech and language therapist who has worked with dementia sufferers and their families for many years. It is designed for speech and language therapists with little experience of dysphagia and dementia and those who wish to extend their theoretical knowledge of the subject especially in the assessment of people in nursing and residential homes.