Experiences of Family Caregivers of Persons with Schizophrenia in the Chronic Course of Illness Management in Rural China: A Qualitative Study

Background and Purpose: For psychiatric nursing in home-based practices, understanding family caregiving and illness management process would benefit informal caregivers in dealing with disease-related encounters at various illness stages. This could enable appropriate responses to properly address particular caregiving issues and to better ameliorate caregiver distress during the course of chronic illness. This study aims to explore the long-term caregiving experiences of the family caregivers of persons with schizophrenia (PwSs) in terms of both positive and negative aspects.

Methods: Utilizing a purposive sampling method, in-depth interviews were conducted with 20 family caregivers of persons who have suffered from schizophrenia for more than twenty years. Face-to-face individual interviews were conducted with the caregivers using a semi-structured interview script, including several open-ended questions. This study empirically investigates their retrospective experiences of caregiver-patient interactions during a long period of family caregiving. The interviews were audio-recorded and then transcribed into text. The transcribed text data were thematically coded and analyzed using a four-phase method of theme development.

Results: Schizophrenia may not only generate a caregiving burden, affect caregivers’ psychological status and accordingly influence their coping strategies, but also have short- or long-term patient-related consequences. Caregivers of PwSs learn to manage their expressions of emotions in order to perform their role as a caregiver more effectively, but doing so takes a toll on them. Due to the illness, family relationships are often restructured, potentially affecting spousal life, generating issues in parenting children, or implicating caregiving for the elderly. Family caregivers should develop their stress management skills to cope with relevant life changes, and increase their knowledge of the potential psychological consequences for care recipients resulting from negative caregiving strategies during home-based practice. Care recipients with schizophrenia in a relatively stable status should be empowered to take care of themselves.

Conclusions and Implications: More effective family-based interventions for psychiatric nursing or individualized training for symptom management should be tailored to serve families’ diverse needs. Psychosocial interventions or stress-management trainings should be provided to caregivers based on kinship types and the situation of caregiver transition, to help them cope with life changes and uncertainty. Patients with a relatively stable status should be empowered to live with the chronic illness by having guidance on: (1) how to recognize a relapse; (2) how to improve their abilities to manage fluctuations unpleasant symptoms; (3) how to seek help from others, such as a doctor, nurse or therapist.