The Daily Experience of Family Members Caring for Persons With Chronic Oropharyngeal Dysphagia: A Qualitative Investigation

IF 2.1 3区医学 Q2 AUDIOLOGY & SPEECH-LANGUAGE PATHOLOGY

International Journal of Language & Communication Disorders Pub Date : 2025-07-25 DOI:10.1111/1460-6984.70094

Aurora Ninfa, Giulia Morandi, Antonio Schindler, Antonella Delle Fave

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However, limited information is available on the challenges and resources perceived by informal caregivers who assist individuals with chronic OD.</p>\n </section>\n \n <section>\n \n <h3> Aim</h3>\n \n <p>To investigate the daily challenges and resources reported by informal caregivers of persons with chronic OD, in order to identify critical aspects requiring implementation through healthcare services.</p>\n </section>\n \n <section>\n \n <h3> Methods</h3>\n \n <p>Eighteen Italian informal caregivers (age 54.2 ± 12.9; 61% female) assisting adults with chronic OD participated in a qualitative study based on a modified framework analysis approach. Care-related challenges and resources were investigated through semi-structured interviews. Two clinical researchers transcribed and coded the interviews, elaborated a working analytical framework, indexed and charted the data. Discrepancies were solved through negotiated agreement and discussion with a third academic researcher. Proportion agreement on extracted quotations was computed.</p>\n </section>\n \n <section>\n \n <h3> Results</h3>\n \n <p>Interviews generated 360 quotations (86% agreement). Specific OD-related challenges emerged in various domains: practical (meal management, food availability and preparation, daily planning), informational, psychological (coping strategies, caring burden, acceptance of their care recipients’ condition, psychological support) and social (change in social roles, care recipient's well-being, social acceptance of OD, social support). The majority of participants identified OD-related problems (<i>n</i> = 17, 94%) and obstacles in healthcare services use (<i>n</i> = 12, 67%); almost half reported care needs (<i>n</i> = 8, 44%). 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引用次数: 0

Abstract

Background

Appropriate management of chronic oropharyngeal dysphagia (OD) requires a family-centred approach. However, limited information is available on the challenges and resources perceived by informal caregivers who assist individuals with chronic OD.

Aim

To investigate the daily challenges and resources reported by informal caregivers of persons with chronic OD, in order to identify critical aspects requiring implementation through healthcare services.

Methods

Eighteen Italian informal caregivers (age 54.2 ± 12.9; 61% female) assisting adults with chronic OD participated in a qualitative study based on a modified framework analysis approach. Care-related challenges and resources were investigated through semi-structured interviews. Two clinical researchers transcribed and coded the interviews, elaborated a working analytical framework, indexed and charted the data. Discrepancies were solved through negotiated agreement and discussion with a third academic researcher. Proportion agreement on extracted quotations was computed.

Results

Interviews generated 360 quotations (86% agreement). Specific OD-related challenges emerged in various domains: practical (meal management, food availability and preparation, daily planning), informational, psychological (coping strategies, caring burden, acceptance of their care recipients’ condition, psychological support) and social (change in social roles, care recipient's well-being, social acceptance of OD, social support). The majority of participants identified OD-related problems (n = 17, 94%) and obstacles in healthcare services use (n = 12, 67%); almost half reported care needs (n = 8, 44%). Regarding resources, most participants referred to coping strategies (n = 17, 94%), personal capabilities (n = 17, 94%), support from family (n = 14, 82%) and healthcare services (n = 14, 78%).

Conclusions

Findings suggest that caring for a person with chronic OD prompts personal and social challenges and resources, besides practical and informational issues. Further research is needed to better understand the determinants and dynamics of caregivers’ positive adjustment and promote a comprehensive family-centred care, overcoming the disease-centred view of caring, primarily focussed on providing information about meal management, clinical issues and related aspects.

WHAT THIS PAPER ADDS

What is already known on the subject

Family-centred approaches involving informal caregivers have been advocated for chronic oropharyngeal dysphagia care. However, limited information is available on informal caregivers’ daily challenges and resources.

What this paper adds to the existing knowledge

Caring for a person with chronic oropharyngeal dysphagia may prompt personal and social challenges and needs beyond those related to clinical and practical knowledge about effective management of the care recipients’ condition.
A broad set of personal and social resources was identified in adjusting to the caring role.

What are the potential or actual clinical implications of this work?

Positive adjustment to the caring role was observed in chronic oropharyngeal dysphagia care, but its determinants and dynamics require further investigation.
Family-centred care approaches for chronic oropharyngeal dysphagia should assess informal caregivers’ multifaceted challenges and address them building on caregivers’ personal and environmental resources.

查看原文本刊更多论文

慢性口咽吞咽困难患者家属护理的日常经验：一项定性调查

背景慢性口咽吞咽困难（OD）的适当管理需要以家庭为中心的方法。然而，关于帮助慢性吸毒过量患者的非正式护理人员所面临的挑战和资源的信息有限。目的调查慢性吸毒过量者非正式照护者报告的日常挑战和资源，以确定需要通过医疗保健服务实施的关键方面。方法18例意大利非正规护理人员(年龄54.2±12.9岁；（61%女性）协助慢性吸毒过量的成年人参与了一项基于改进框架分析方法的定性研究。通过半结构化访谈调查与护理相关的挑战和资源。两位临床研究人员对访谈进行了转录和编码，详细阐述了一个有效的分析框架，对数据进行了索引和绘制。差异通过与第三位学术研究者的协商和讨论解决。对抽取的报价进行比例一致性计算。访谈产生360个报价（86%同意）。具体的OD相关挑战出现在各个领域：实际的（膳食管理，食物供应和准备，日常计划），信息，心理（应对策略，照顾负担，接受照顾者的状况，心理支持）和社会（社会角色的变化，照顾者的福祉，对OD的社会接受，社会支持）。大多数参与者确定了与吸毒过量相关的问题（n = 17, 94%）和医疗服务使用方面的障碍（n = 12, 67%）；几乎一半报告了护理需求（n = 8, 44%）。关于资源，大多数参与者提到应对策略（n = 17, 94%）、个人能力（n = 17, 94%）、家庭支持（n = 14, 82%）和保健服务（n = 14, 78%）。结论：研究结果表明，照顾慢性吸毒过量患者除了实际和信息问题外，还面临着个人和社会的挑战和资源。需要进一步的研究来更好地了解照顾者积极调整的决定因素和动态，促进全面的以家庭为中心的照顾，克服以疾病为中心的照顾观，主要侧重于提供有关膳食管理、临床问题和相关方面的信息。这篇论文补充了什么是已经知道的关于这个主题的家庭为中心的方法涉及非正式的照顾者已经提倡慢性口咽吞咽困难的护理。然而，关于非正式护理人员的日常挑战和资源的信息有限。本文对现有知识的补充是，护理慢性口咽吞咽困难患者可能会引发个人和社会的挑战和需求，而不仅仅是与有效管理护理对象病情的临床和实践知识相关的挑战和需求。在适应照顾角色的过程中，发现了一系列广泛的个人和社会资源。这项工作的潜在或实际临床意义是什么？在慢性口咽吞咽困难护理中观察到对护理作用的积极调整，但其决定因素和动态需要进一步研究。以家庭为中心的慢性口咽吞咽困难护理方法应评估非正式护理人员的多方面挑战，并根据护理人员的个人和环境资源来解决这些挑战。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

International Journal of Language & Communication Disorders AUDIOLOGY & SPEECH-LANGUAGE PATHOLOGY-REHABILITATION

CiteScore

3.30

自引率

12.50%

发文量

116

审稿时长

6-12 weeks

期刊介绍： The International Journal of Language & Communication Disorders (IJLCD) is the official journal of the Royal College of Speech & Language Therapists. The Journal welcomes submissions on all aspects of speech, language, communication disorders and speech and language therapy. It provides a forum for the exchange of information and discussion of issues of clinical or theoretical relevance in the above areas.