Care demanded journey map for primary caregivers of the patients with spinal cord injury:a longitudinal qualitative study
10.3969/j.issn.1671-8283.2025.01.008
- VernacularTitle:脊髓损伤患者主要照顾者照护需求旅程地图的纵向质性研究
- Author:
Mengling LEI
1
;
Xia CHEN
;
Fangfang ZHAO
;
Chengqian HUANG
;
Cheng WANG
Author Information
1. 蚌埠医科大学护理学院,安徽 蚌埠,233030;中国科学技术大学附属第一医院,安徽 合肥,230001
- Publication Type:Journal Article
- Keywords:
spinal cord injury;
caregiver;
journey map;
longitudinal qualitative study
- From:
Modern Clinical Nursing
2025;24(1):46-52
- CountryChina
- Language:Chinese
-
Abstract:
Objective To identify the multidimensional care needs for primary caregivers of the patients with spinal cord injury based on a journey map so as to provide a reference for caregivers to develop supportive interventions through the whole-journey.Method A longitudinal descriptive qualitative study was conducted,and purposive sampling was employed to select 14 primary caregivers for the patients with spinal cord injury from a Grade ⅢA hospital in Hefei between March and May 2024 for 3 rounds of semi-structured interviews.Content analysis was conducted to organise the data and to extract the themes.Based on the extracted themes,a journey map of the care needs for primary caregivers was plotted.Results The journey map was plotted based on 3 phases of the patients with spinal cord injury:diagnosis,discharge transition and rehabilitation as the horizontal axis of time,and the tasks,emotions,and barriers during the care-providing period as the vertical axis of tasks.Nine themes were identified and plotted by journey map,including three domains on tasks for three phases(high demand for hospitalisation assistance,urgent need for home care skills and dual role challenge),three domains on emotional conditions for three phases(psychological adjustment,heavy negative emotion experience and positive experience)and three domains on care-giving barriers for three phases(need for disease-related knowledge,lack of medicine-related laws and changes in family economy and structure).Conclusion The journey map of the care needs for primary caregivers among the patients with spinal cord injury is complex and multi-dimensional.Medical staff should accurately devise intervention plans according to the task axis at different stages of disease.This will enable the allocation of high-quality supporting resources throughout the whole care-providing journey,thereby improving the quality of care as well as the outcomes of care.
