A qualitative study on the subjective experience of prolonged care among family members of patients with moderate to severe dementia
Abstract Objectives To explore the family members’ subjective experiences of prolonged care for individuals suffering from moderate to severe dementia and to provide evidence supporting the development of support strategies and precise interventions targeting this group. Methods A purposive sampling...
Saved in:
| Main Authors: | , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
BMC
2025-04-01
|
| Series: | BMC Palliative Care |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12904-025-01738-x |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1850284590049001472 |
|---|---|
| author | Yuhui Wang Yan Liang Wei Feng Xiaoshuang Lu Yejie Peng Dezhi Chen |
| author_facet | Yuhui Wang Yan Liang Wei Feng Xiaoshuang Lu Yejie Peng Dezhi Chen |
| author_sort | Yuhui Wang |
| collection | DOAJ |
| description | Abstract Objectives To explore the family members’ subjective experiences of prolonged care for individuals suffering from moderate to severe dementia and to provide evidence supporting the development of support strategies and precise interventions targeting this group. Methods A purposive sampling method was used to select family members of patients with moderate to severe dementia within the neurology department of a hospital in Chengdu City for face-to-face in-depth interviews. Data were analyzed using the seven-step analysis of data from the Colaizzi phenomenological study. Results Three main themes were identified in this study: (1) Pressures and burdens faced, (2) Lack of social support, (3) Positive changes. In addition, 11 sub-themes were extracted as the subjective experience of prolonged care among family members of patients with moderate to severe dementia. Conclusion The subjective feelings of families of patients with moderate to severe dementia about prolonged care are complex and specific. Family members face tremendous pressures, still lack social support, and lack coordinated communication among communities, families, and hospitals. In the future, we should learn from the practical experience of prolonged care in foreign countries, fully integrate with China’s national conditions, promote the improvement of the prolonged care system for patients with dementia, accelerate the construction of community-based professional care institutions, gain a deeper understanding of the challenges and needs faced by family members, enhance their experience of care, improve their quality of life, and help the patients and family members to better pass through the stage of moderate-to-severe disease. |
| format | Article |
| id | doaj-art-d6ed4bc3fd414ab9802bcbadbdf82097 |
| institution | OA Journals |
| issn | 1472-684X |
| language | English |
| publishDate | 2025-04-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Palliative Care |
| spelling | doaj-art-d6ed4bc3fd414ab9802bcbadbdf820972025-08-20T01:47:32ZengBMCBMC Palliative Care1472-684X2025-04-012411910.1186/s12904-025-01738-xA qualitative study on the subjective experience of prolonged care among family members of patients with moderate to severe dementiaYuhui Wang0Yan Liang1Wei Feng2Xiaoshuang Lu3Yejie Peng4Dezhi Chen5Department of Neurology, West China Hospital, Sichuan UniversityDepartment of Neurology, West China Hospital, Sichuan UniversityDepartment of Neurology, West China Hospital, Sichuan UniversityDepartment of Neurology, West China Hospital, Sichuan UniversityDepartment of Neurology, West China Hospital, Sichuan UniversityDepartment of Neurology, West China Hospital, Sichuan UniversityAbstract Objectives To explore the family members’ subjective experiences of prolonged care for individuals suffering from moderate to severe dementia and to provide evidence supporting the development of support strategies and precise interventions targeting this group. Methods A purposive sampling method was used to select family members of patients with moderate to severe dementia within the neurology department of a hospital in Chengdu City for face-to-face in-depth interviews. Data were analyzed using the seven-step analysis of data from the Colaizzi phenomenological study. Results Three main themes were identified in this study: (1) Pressures and burdens faced, (2) Lack of social support, (3) Positive changes. In addition, 11 sub-themes were extracted as the subjective experience of prolonged care among family members of patients with moderate to severe dementia. Conclusion The subjective feelings of families of patients with moderate to severe dementia about prolonged care are complex and specific. Family members face tremendous pressures, still lack social support, and lack coordinated communication among communities, families, and hospitals. In the future, we should learn from the practical experience of prolonged care in foreign countries, fully integrate with China’s national conditions, promote the improvement of the prolonged care system for patients with dementia, accelerate the construction of community-based professional care institutions, gain a deeper understanding of the challenges and needs faced by family members, enhance their experience of care, improve their quality of life, and help the patients and family members to better pass through the stage of moderate-to-severe disease.https://doi.org/10.1186/s12904-025-01738-xModerate to severe dementiaFamily membersProlonged careQualitative researchSubjective experience |
| spellingShingle | Yuhui Wang Yan Liang Wei Feng Xiaoshuang Lu Yejie Peng Dezhi Chen A qualitative study on the subjective experience of prolonged care among family members of patients with moderate to severe dementia BMC Palliative Care Moderate to severe dementia Family members Prolonged care Qualitative research Subjective experience |
| title | A qualitative study on the subjective experience of prolonged care among family members of patients with moderate to severe dementia |
| title_full | A qualitative study on the subjective experience of prolonged care among family members of patients with moderate to severe dementia |
| title_fullStr | A qualitative study on the subjective experience of prolonged care among family members of patients with moderate to severe dementia |
| title_full_unstemmed | A qualitative study on the subjective experience of prolonged care among family members of patients with moderate to severe dementia |
| title_short | A qualitative study on the subjective experience of prolonged care among family members of patients with moderate to severe dementia |
| title_sort | qualitative study on the subjective experience of prolonged care among family members of patients with moderate to severe dementia |
| topic | Moderate to severe dementia Family members Prolonged care Qualitative research Subjective experience |
| url | https://doi.org/10.1186/s12904-025-01738-x |
| work_keys_str_mv | AT yuhuiwang aqualitativestudyonthesubjectiveexperienceofprolongedcareamongfamilymembersofpatientswithmoderatetoseveredementia AT yanliang aqualitativestudyonthesubjectiveexperienceofprolongedcareamongfamilymembersofpatientswithmoderatetoseveredementia AT weifeng aqualitativestudyonthesubjectiveexperienceofprolongedcareamongfamilymembersofpatientswithmoderatetoseveredementia AT xiaoshuanglu aqualitativestudyonthesubjectiveexperienceofprolongedcareamongfamilymembersofpatientswithmoderatetoseveredementia AT yejiepeng aqualitativestudyonthesubjectiveexperienceofprolongedcareamongfamilymembersofpatientswithmoderatetoseveredementia AT dezhichen aqualitativestudyonthesubjectiveexperienceofprolongedcareamongfamilymembersofpatientswithmoderatetoseveredementia AT yuhuiwang qualitativestudyonthesubjectiveexperienceofprolongedcareamongfamilymembersofpatientswithmoderatetoseveredementia AT yanliang qualitativestudyonthesubjectiveexperienceofprolongedcareamongfamilymembersofpatientswithmoderatetoseveredementia AT weifeng qualitativestudyonthesubjectiveexperienceofprolongedcareamongfamilymembersofpatientswithmoderatetoseveredementia AT xiaoshuanglu qualitativestudyonthesubjectiveexperienceofprolongedcareamongfamilymembersofpatientswithmoderatetoseveredementia AT yejiepeng qualitativestudyonthesubjectiveexperienceofprolongedcareamongfamilymembersofpatientswithmoderatetoseveredementia AT dezhichen qualitativestudyonthesubjectiveexperienceofprolongedcareamongfamilymembersofpatientswithmoderatetoseveredementia |