Dataset Information

The Experiences of Multiple Sclerosis Patients' Family Caregivers at the First Hospitalization of Their Patients: A Qualitative Study.

ABSTRACT: Background and Aim:Being diagnosed with multiple sclerosis is usually accompanied by emotional trauma for patients and their families. The chronic, progressive, and unpredictable nature of the disease spells the patients' long-term need for care from their families. As soon as a diagnosis is made, family caregivers are faced with many challenges. The present study aims to identify family caregivers' experiences at the first hospitalization of their patients. Materials and Methods:The present study is a work of qualitative research and uses the conventional content analysis approach. It lasted from July 2019 to March 2020. The subjects were selected via purposeful sampling. To collect data, the researchers conducted in-depth, semi-structured interviews with 18 family caregivers of patients with multiple sclerosis. The collected data were analyzed using MAXQDA 2007. Results:Analysis of the data yielded three themes: peaceful environment, need for continuing full support, and religion-based coping strategies. Conclusion:The findings of the present study can be used to develop support programs that address family caregivers' problems and needs to assist them in accepting and coping with the conditions of their patients, thereby increasing the quality of care provided to patients with multiple sclerosis.

SUBMITTER: Tehranineshat B

PROVIDER: S-EPMC7367720 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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The Experiences of Multiple Sclerosis Patients' Family Caregivers at the First Hospitalization of Their Patients: A Qualitative Study.

Tehranineshat Banafsheh B Yektatalab Shahrzad S Momennasab Marzieh M Bijani Mostafa M Mohammadi Fateme F

Patient preference and adherence 20200713

<h4>Background and aim</h4>Being diagnosed with multiple sclerosis is usually accompanied by emotional trauma for patients and their families. The chronic, progressive, and unpredictable nature of the disease spells the patients' long-term need for care from their families. As soon as a diagnosis is made, family caregivers are faced with many challenges. The present study aims to identify family caregivers' experiences at the first hospitalization of their patients.<h4>Materials and methods</h4> ...[more]

PMID: 32764889

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Project description:BackgroundLipodystrophy comprises a group of conditions characterized by loss of functional adipose tissue, resulting in severe metabolic complications and a complex range of symptoms.ObjectiveThis study sought to gain a holistic understanding of the impact of congenital or non-human immunodeficiency virus acquired lipodystrophies on the quality of life of patients and their caregivers and to capture the impact of lipodystrophy on quality of life using a standard instrument.MethodsTen patients with lipodystrophies and five caregivers from the USA and UK were recruited through convenience sampling and interviewed using a semi-structured questionnaire containing open-ended questions about disease symptoms and attributes and numerical rating scales to prompt discussion of symptom prevalence and impact. After the interview, participants filled out the 36-Item Short Form (SF-36) survey instrument. Conventional conceptual content analysis methods were used to analyze the anonymized transcripts.ResultsFour concepts were developed: diagnostic journey and symptom management, burden of disease, healthcare resource utilization, and support and advocacy. Participants described lengthy diagnostic journeys and frequent interactions with healthcare systems. Many participants became experts on lipodystrophy through the diagnostic journey and described difficulties accessing effective treatment, even after diagnosis. Both patients and caregivers emphasized the ongoing burden of living with lipodystrophy and the accompanying sense of isolation. Participants turned to disease-specific support groups to cope, engaging in knowledge sharing with other patients and caregivers and developing friendships based on shared experiences. Ten participants completed the SF-36, with a mean (standard deviation) SF-36 score of 0.6 (0.2).ConclusionsCurrently, there are no qualitative studies that describe the experiences of patients with lipodystrophy and their caregivers. While additional research is needed, educational work like this study is a promising first step that could lead to early diagnosis and access to treatment and support.

Dataset Information

The Experiences of Multiple Sclerosis Patients' Family Caregivers at the First Hospitalization of Their Patients: A Qualitative Study.

Publications

The Experiences of Multiple Sclerosis Patients' Family Caregivers at the First Hospitalization of Their Patients: A Qualitative Study.

Similar Datasets

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