Caregivers’ Care Needs for Advanced Cancer Pain Patients with Intrathecal Morphine Pump: A Mixed Methods Journey Mapping Study

Abstract

Aim: This study aimed to explore the dynamic care needs and emotional experiences of caregivers during the perioperative and early post-discharge periods using a mixed-methods approach and patient journey mapping.

Design: A mixed-methods design, qualitative in-depth individual interviews and integrating quantitative data analysis.

Methods: A total of 17 caregivers of patients undergoing intrathecal morphine pump implantation participated in semi-structured interviews. Interviews were conducted across five key care phases: Pain Clinic (Decision-making Stage); Admission Day (Preoperative Preparation); Surgery Day/Pain Relief Treatment Implementation; One Day Before Discharge (Home Care Preparation); 1-2 Weeks After Discharge. Quantitative data were collected using the Hamilton Anxiety Rating Scale (HAMA) and the Zarit Caregiver Burden Scale. We combined qualitative themes with quantitative data to build a full journey map. This map shows how the care needs, emotional ups and downs, and key contact points change over time for caregivers of advanced cancer pain patients. We also tracked caregivers' anxiety and burden levels across the five phases.

Result: Caregivers' needs shift across the treatment trajectory. Anxiety and burden peak during the home care period after intrathecal morphine pump implantation. The main pain points are: fear of handling complications alone at home, and insufficient discharge instructions. On the flip side, caregivers feel relief and safety during hospital stays, largely because they trust the professional care. The journey map also reveals that limited home support and poor follow‑up services keep caregivers struggling.

Conclusion: Caregivers of these patients have different needs at different stages. Nurses should focus on periods with high burden and high anxiety, offering tailored assessments and interventions. That would ease caregiver stress and improve end‑of‑life care quality.

Patient or Public Contribution: No patients or public members were involved in designing, conducting, or reporting this study.