Information Needs of Primary Family Caregivers of Patients with First-Ever Stroke in China: A Qualitative Study

Background/Objectives: Primary family caregivers of patients with first-ever stroke often lack caregiving experience and must acquire information about the disease, treatment, rehabilitation, and home care within a short period. However, their specific information needs remain unclear. Therefore, we aimed to explore these caregivers’ specific information needs in China. Methods: A descriptive qualitative study guided by existence, relatedness, and growth (ERG) theory was conducted in July–August 2026. Eighteen caregivers were purposively recruited for maximum variation from a tertiary hospital. Each completed one semi-structured interview during hospitalization or within 6 months after discharge. Data were thematically analyzed using deductive and inductive coding. Results: Using ERG theory as the organizing framework, we identified 16 subthemes describing caregivers’ specific information needs. Existence needs included disease understanding and recovery expectations, medication management, recurrence risk and response, daily caregiving, diet and nutrition, rehabilitation, healthcare service use and social security. Relatedness needs included communication with patients with language impairment, responding to patients’ emotions, communication with minors in the family, resumption of social participation and communication about sexual life. Growth needs included being a competent caregiver, coping with caregiving stress and health information acquisition and appraisal. Needs sometimes coexisted across levels. Traditional food-based nourishment and traditional Chinese medicine rehabilitation reflected the Chinese family caregiving context. Conclusions: The ERG framework helped organize caregivers’ information needs and provided an exploratory perspective on how different needs may coexist. Some of these needs reflected the Chinese family caregiving context. These findings may inform comprehensive needs assessment and context-sensitive information support.

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Publication Details

Journal
Healthcare
Published
2026-11-11
DOI
https://doi.org/10.3390/healthcare14223859
Primary Topic
Nursing care and research
Type
article
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article

Information Needs of Primary Family Caregivers of Patients with First-Ever Stroke in China: A Qualitative Study

Dianxu Ren, 景丽伟, Fang Wang, Zheng Tian et al.
Healthcare
Nursing care and research
article

Information Needs of Primary Family Caregivers of Patients with First-Ever Stroke in China: A Qualitative Study

Dianxu Ren, 景丽伟, Fang Wang, Zheng Tian, Lihui Liu, Lily Xiao
article en

Abstract

Background/Objectives: Primary family caregivers of patients with first-ever stroke often lack caregiving experience and must acquire information about the disease, treatment, rehabilitation, and home care within a short period. However, their specific information needs remain unclear. Therefore, we aimed to explore these caregivers’ specific information needs in China. Methods: A descriptive qualitative study guided by existence, relatedness, and growth (ERG) theory was conducted in July–August 2026. Eighteen caregivers were purposively recruited for maximum variation from a tertiary hospital. Each completed one semi-structured interview during hospitalization or within 6 months after discharge. Data were thematically analyzed using deductive and inductive coding. Results: Using ERG theory as the organizing framework, we identified 16 subthemes describing caregivers’ specific information needs. Existence needs included disease understanding and recovery expectations, medication management, recurrence risk and response, daily caregiving, diet and nutrition, rehabilitation, healthcare service use and social security. Relatedness needs included communication with patients with language impairment, responding to patients’ emotions, communication with minors in the family, resumption of social participation and communication about sexual life. Growth needs included being a competent caregiver, coping with caregiving stress and health information acquisition and appraisal. Needs sometimes coexisted across levels. Traditional food-based nourishment and traditional Chinese medicine rehabilitation reflected the Chinese family caregiving context. Conclusions: The ERG framework helped organize caregivers’ information needs and provided an exploratory perspective on how different needs may coexist. Some of these needs reflected the Chinese family caregiving context. These findings may inform comprehensive needs assessment and context-sensitive information support.

HealthcareVol. 14(22)
Flinders University (AU), University of Pittsburgh (US), Capital Medical University (CN), Chinese Academy of Medical Sciences & Peking Union Medical College (CN), Beijing Shijitan Hospital (CN)
Nursing care and research
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