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Aim <p>Neurological conditions often result in long-term care needs, placing family caregivers at the centre of patients’ recovery and ongoing care. Although quantitative studies have identified substantial caregiver burden, the lived experiences underlying this burden remain insufficiently understood. This study aimed to explore the lived experiences of caregiver burden among primary caregivers of patients with neurological conditions and synthesise qualitative evidence to inform nursing practice and supportive interventions.</p> Methods <p>We conducted a qualitative meta-synthesis to explore the experiences of informal caregivers of patients with neurological conditions. PubMed, CINAHL, Embase, Cochrane Library, SinoMed, and Web of Science were searched from inception to 1 April 2026. The methodological quality of included studies was assessed using the Joanna Briggs Institute (JBI) Critical Appraisal Checklist for Qualitative Research (JBI, 2020). Two reviewers independently conducted study screening, quality appraisal, and data extraction, with disagreements resolved through discussion or consultation with a third reviewer. Data were synthesised thematically following the three-stage approach of Thomas and Harden (2008), involving line-by-line coding of the findings, development of descriptive themes, and generation of analytical themes.</p> Results <p>A total of 26 qualitative studies were included. Five overarching themes emerged from caregivers’ experiences: (i) Physical and psychological burden, including health deterioration and emotional distress; (ii) economic burden and social restrictions, including employment loss and social isolation; (iii) role conflict and loss of self, characterised by entrapment in the caregiving role and the loss of pre-existing identity; (iv) inadequate support, involving insufficient social support, limited access to information, and poorly timed professional interventions; (v) cultural obligations and self-sacrifice, reflecting filial piety, marital responsibilities, self-reliance, and neglecting personal health.</p> Conclusions <p>This meta-synthesis demonstrates that primary caregivers of patients with neurological conditions experience multidimensional and culturally embedded burdens. The findings highlight the importance of timely professional support, improved access to information resources, and opportunities for emotional expression. Moreover, structured discharge education and flexible respite care services may help alleviate caregiver burden. Future studies examining the cultural dimensions of caregiving and the evolving nature of caregiver burden over time may provide further insights into the development of targeted interventions.</p>

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Experiences of care burden among primary caregivers of patients with neurological conditions: a meta-synthesis

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年7月31日

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  • Shuying Liao,
  • Shujuan Duan,
  • Xiaoqing Xie,
  • Li Wang,
  • Li Zhang,
  • Jianxia Lyu

摘要

Aim

Neurological conditions often result in long-term care needs, placing family caregivers at the centre of patients’ recovery and ongoing care. Although quantitative studies have identified substantial caregiver burden, the lived experiences underlying this burden remain insufficiently understood. This study aimed to explore the lived experiences of caregiver burden among primary caregivers of patients with neurological conditions and synthesise qualitative evidence to inform nursing practice and supportive interventions.

Methods

We conducted a qualitative meta-synthesis to explore the experiences of informal caregivers of patients with neurological conditions. PubMed, CINAHL, Embase, Cochrane Library, SinoMed, and Web of Science were searched from inception to 1 April 2026. The methodological quality of included studies was assessed using the Joanna Briggs Institute (JBI) Critical Appraisal Checklist for Qualitative Research (JBI, 2020). Two reviewers independently conducted study screening, quality appraisal, and data extraction, with disagreements resolved through discussion or consultation with a third reviewer. Data were synthesised thematically following the three-stage approach of Thomas and Harden (2008), involving line-by-line coding of the findings, development of descriptive themes, and generation of analytical themes.

Results

A total of 26 qualitative studies were included. Five overarching themes emerged from caregivers’ experiences: (i) Physical and psychological burden, including health deterioration and emotional distress; (ii) economic burden and social restrictions, including employment loss and social isolation; (iii) role conflict and loss of self, characterised by entrapment in the caregiving role and the loss of pre-existing identity; (iv) inadequate support, involving insufficient social support, limited access to information, and poorly timed professional interventions; (v) cultural obligations and self-sacrifice, reflecting filial piety, marital responsibilities, self-reliance, and neglecting personal health.

Conclusions

This meta-synthesis demonstrates that primary caregivers of patients with neurological conditions experience multidimensional and culturally embedded burdens. The findings highlight the importance of timely professional support, improved access to information resources, and opportunities for emotional expression. Moreover, structured discharge education and flexible respite care services may help alleviate caregiver burden. Future studies examining the cultural dimensions of caregiving and the evolving nature of caregiver burden over time may provide further insights into the development of targeted interventions.