‘This is your golden time. You enjoy it and you’ve plenty time for crying after’: How dysphagia impacts family caregivers of people with amyotrophic lateral sclerosis – A qualitative study

Lisiecka, Dominika; Kelly, Helen; Jackson, Jeanne

doi:10.1177/0269216320932754

Cited by 17 publications

(15 citation statements)

References 59 publications

(107 reference statements)

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“…Meal management included preparing food with adequate rheological and nutritional characteristics, assisting the patient in case of swallowing problems, investing additional time and thought on meals preparation and consumption, splitting lunch and dinner into small but frequent meals, and giving practical assistance to patients during meals (e.g. feeding the patient or reminding him/her of behavioral strategies for meal consumption) [ 18 , 52 – 54 , 56 , 62 , 65 ]. Food availability referred to the restricted choice of safe and tasty food in healthcare facilities, at home, or during social occasions [ 18 , 53 , 54 , 61 , 63 ].…”

Section: Resultsmentioning

confidence: 99%

“…feeding the patient or reminding him/her of behavioral strategies for meal consumption) [ 18 , 52 – 54 , 56 , 62 , 65 ]. Food availability referred to the restricted choice of safe and tasty food in healthcare facilities, at home, or during social occasions [ 18 , 53 , 54 , 61 , 63 ].…”

Section: Resultsmentioning

confidence: 99%

“…Within Social needs, the most frequent subcategory was receiving support from caregivers or other family members, health professionals and other patients [ 18 , 51 , 55 , 56 , 61 , 63 ], followed by obtaining acceptance from family, friends, and community members [ 18 , 52 , 54 , 55 , 62 , 63 , 65 ], coping with changes in one’s family and social roles [ 55 , 56 , 65 ], and experiencing concerns for the other member of the dyad [ 53 – 56 , 65 ].…”

Section: Resultsmentioning

confidence: 99%

“…Among the psychological needs, the predominant one was to cope with the emotions evoked by eating difficulties, such as fear and anger, and with a feeling of loss [ 18 , 51 , 54 – 57 , 61 , 63 , 65 ]. Furthermore, patients and caregivers reported problem-focused [ 18 , 51 , 56 , 57 , 59 ] and meaning-focused coping strategies, such as acceptance of the swallowing problem as a part of one’s own identity, acceptance of a "new normal" condition, and recognition of changes in one’s own social roles [ 18 , 54 , 56 , 63 ]. In addition, patients and caregivers expressed the need to better connect the information received about symptom development with their own daily experience of OD [ 18 , 56 , 63 ].…”

Section: Resultsmentioning

confidence: 99%

“…Some patients reported the need to be motivated at eating, due to loss of eating desire [ 55 , 62 , 65 ], while others hoped to be able to enjoy food again [ 52 , 55 , 63 ]. Similarly, caregivers expressed the importance of maintaining a positive attitude in order to overcome eating-related difficulties [ 18 , 54 ] and to consider the caregiver role as an opportunity for personal growth [ 56 ].…”

Section: Resultsmentioning

confidence: 99%

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The care needs of persons with oropharyngeal dysphagia and their informal caregivers: A scoping review

et al. 2021

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Introduction Besides affecting physical health, Oropharyngeal Dysphagia (OD) entails limitations in daily activities and social participation for both patients and their informal caregivers. The identification of OD-related needs is crucial for designing appropriate person-centered interventions. Aims To explore and map the literature investigating the care needs related to OD management of adult persons with OD and their informal caregivers during the last 20 years. Methods A scoping review was conducted and reported following PRISMA guidelines. Five electronic databases and reference lists of eligible publications were searched for original works in English or Italian, published between January 2000 and February 2021. Two independent raters assessed studies’ eligibility and extracted data; a third rater resolved disagreements. Extracted care needs were analyzed using a Best fit framework synthesis approach. Results Out of 2,534 records preliminarily identified, 15 studies were included in the review and 266 care needs were extracted. All studies were conducted in Western countries. Research methods primarily consisted of qualitative interviews and focus groups (14 studies, 93.3%); head and neck cancer was the most frequent cause of patients’ dysphagia (8 studies, 53.3%); caregivers’ perspective was seldom investigated (5 studies, 33.3%). Both patients and caregivers primarily reported social (N = 77; 28.9%) and practical (N = 67; 25.2%) needs, followed by informational (N = 55; 20.7%) and psychological (N = 54; 20.3%) ones. Only patients reported physical needs (N = 13; 4.9%), while spiritual needs were not cited. Conclusions The recurrence of personal and social needs besides physical ones highlighted the manifold impact of OD on patients’ and caregivers’ lives. Larger and more focused studies are required in order to design tools and interventions tailored to patients’ and caregivers’ needs.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

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The care needs of persons with oropharyngeal dysphagia and their informal caregivers: A scoping review

et al. 2021

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A clinical bulbar assessment scale (CBAS) for amyotrophic lateral sclerosis

et al. 2022

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Introduction/Aims: Comprehensive and valid bulbar assessment scales for use within amyotrophic lateral sclerosis (ALS) clinics are critically needed. The aims of this study are to develop the Clinical Bulbar Assessment Scale (CBAS) and complete preliminary validation. Methods:The authors selected CBAS items from among the literature and expert opinion, and content validity ratio (CVR) was calculated. Following consent, the CBAS was administered to a pilot sample of English-speaking adults with El Escorial defined ALS (N = 54) from a multidisciplinary clinic, characterizing speech, swallowing, and extrabulbar features. Criterion validity was assessed by correlating CBAS scores with commonly used ALS scales, and internal consistency reliability was obtained.Results: Expert raters reported strong agreement for the CBAS items (CVR = 1.00; 100% agreement). CBAS scores yielded a moderate, significant, negative correlation with ALS Functional Rating Scale-Revised (ALSFRS-R) total scores (r = À0.652, p < .001), and a strong, significant, negative correlation with ALSFRS-R bulbar subscale scores (r = À0.795, p < .001). There was a strong, significant, positive correlation with Center for Neurologic Studies Bulbar Function Scale (CNS-BFS) scores (r = 0.819, p < .001). CBAS scores were significantly higher for bulbar onset (mean = 38.9% of total possible points, SD = 22.6) than spinal onset (mean = 18.7%, SD = 15.8; p = .004). Internal consistency reliability (Cronbach's alpha) values were: (a) total CBAS, α = 0.889; (b) Speech subscale, α = 0.903; and (c) Swallowing subscale, α = 0.801. Discussion: The CBAS represents a novel means of standardized bulbar data collection using measures of speech, swallowing, respiratory, and cognitive-linguistic skills.Preliminary evidence suggests the CBAS is a valid, reliable scale for clinical assessment of bulbar dysfunction.

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The perceptions and experiences of caregivers of patients with dysphagia: A qualitative meta‐synthesis

Yi,

Mao,

et al. 2024

Nursing Open

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AimsTo understand the perceptions and experiences of family caregivers of adult patients with dysphagia.BackgroundDysphagia is a common symptom and burdens caregivers greatly. There is a growing body of studies concentrating on caregivers and caregiving experiences. However, no qualitative meta‐synthesis has been conducted to explore the perceptions and experiences of family caregivers.DesignA qualitative meta‐ethnography.MethodsA search was conducted for relevant articles in six electronic databases (PubMed, Web of Science, CINAHL, Ovid, Cochrane Library, ProQuest) and two Chinese databases (CNKI, Wanfang Data) from inception to February 2023. The Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI‐QARI) was used to evaluate study quality. The meta‐ethnographic method was used to synthesize data from qualitative studies. The study was reported according to EQUATOR guidelines.ResultsEleven studies were included and three themes emerged: (1) emotion and perception, (2) change and challenge (3) adaption and coping.ConclusionThis review highlighted the challenges and positive coping experienced by caregivers. Findings directly inform the development and implementation of supportive interventions to reduce caregivers' stress and promote adaptive coping.Relevance to clinical practicePay attention to the needs of family caregivers of dysphagia. Family caregivers' perceived severity of dysphagia requires assessment. Caregivers need knowledge, support, and guidance to reduce their burden and fulfill their role.

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‘This is your golden time. You enjoy it and you’ve plenty time for crying after’: How dysphagia impacts family caregivers of people with amyotrophic lateral sclerosis – A qualitative study

Cited by 17 publications

References 59 publications

The care needs of persons with oropharyngeal dysphagia and their informal caregivers: A scoping review

The care needs of persons with oropharyngeal dysphagia and their informal caregivers: A scoping review

A clinical bulbar assessment scale (CBAS) for amyotrophic lateral sclerosis

The perceptions and experiences of caregivers of patients with dysphagia: A qualitative meta‐synthesis

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