Caregivers’ View of Socio-Medical Care in the Terminal Phase of Amyotrophic Lateral Sclerosis—How Can We Improve Holistic Care in ALS?
Multidimensional socio-medical care with an early integration of palliative principles is strongly recommended in amyotrophic lateral sclerosis (ALS), but provided inconsistently. We conducted telephone interviews with 49 former caregivers of deceased ALS patients to examine their experience of care...
| Main Authors: | , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
MDPI AG
2022-01-01
|
| Series: | Journal of Clinical Medicine |
| Subjects: | |
| Online Access: | https://www.mdpi.com/2077-0383/11/1/254 |
| _version_ | 1797498641555914752 |
|---|---|
| author | Katharina Linse Elisa Aust René Günther Andreas Hermann |
| author_facet | Katharina Linse Elisa Aust René Günther Andreas Hermann |
| author_sort | Katharina Linse |
| collection | DOAJ |
| description | Multidimensional socio-medical care with an early integration of palliative principles is strongly recommended in amyotrophic lateral sclerosis (ALS), but provided inconsistently. We conducted telephone interviews with 49 former caregivers of deceased ALS patients to examine their experience of care in the terminal phase including caregiver burden. Patients who received specialized palliative care (45% of patients) were more likely to die at home (<i>p</i> = 0.004) and without burdening symptoms (<i>p</i> = 0.021). The majority of caregivers (86%) reported deficits in socio-medical care. Most frequently mentioned were problems receiving medical aids (45%) and a lack of caregiver support (35%). A higher level of deficits experienced by caregivers was associated with negative health outcomes on the side of the caregivers (reported by 57% of them; <i>p</i> = 0.002) and stronger caregiver burden (<i>p</i> = 0.004). To provide good quality of dying to patients and reduce the burden on caregivers, multidimensional—including palliative—care in ALS urgently needs to be strengthened in the healthcare structures. |
| first_indexed | 2024-03-10T03:36:15Z |
| format | Article |
| id | doaj.art-fb07945b40374490aa95ff3be22ab515 |
| institution | Directory Open Access Journal |
| issn | 2077-0383 |
| language | English |
| last_indexed | 2024-03-10T03:36:15Z |
| publishDate | 2022-01-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Journal of Clinical Medicine |
| spelling | doaj.art-fb07945b40374490aa95ff3be22ab5152023-11-23T11:46:05ZengMDPI AGJournal of Clinical Medicine2077-03832022-01-0111125410.3390/jcm11010254Caregivers’ View of Socio-Medical Care in the Terminal Phase of Amyotrophic Lateral Sclerosis—How Can We Improve Holistic Care in ALS?Katharina Linse0Elisa Aust1René Günther2Andreas Hermann3Deptartment of Neurology, Technische Universität Dresden, 01069 Dresden, GermanyDeptartment of Neurology, Technische Universität Dresden, 01069 Dresden, GermanyDeptartment of Neurology, Technische Universität Dresden, 01069 Dresden, GermanyTranslational Neurodegeneration Section “Albrecht Kossel”, Department of Neurology, University Medical Center Rostock, 18147 Rostock, GermanyMultidimensional socio-medical care with an early integration of palliative principles is strongly recommended in amyotrophic lateral sclerosis (ALS), but provided inconsistently. We conducted telephone interviews with 49 former caregivers of deceased ALS patients to examine their experience of care in the terminal phase including caregiver burden. Patients who received specialized palliative care (45% of patients) were more likely to die at home (<i>p</i> = 0.004) and without burdening symptoms (<i>p</i> = 0.021). The majority of caregivers (86%) reported deficits in socio-medical care. Most frequently mentioned were problems receiving medical aids (45%) and a lack of caregiver support (35%). A higher level of deficits experienced by caregivers was associated with negative health outcomes on the side of the caregivers (reported by 57% of them; <i>p</i> = 0.002) and stronger caregiver burden (<i>p</i> = 0.004). To provide good quality of dying to patients and reduce the burden on caregivers, multidimensional—including palliative—care in ALS urgently needs to be strengthened in the healthcare structures.https://www.mdpi.com/2077-0383/11/1/254amyotrophic lateral sclerosisend-of-life carepalliative carecaregiver burdeninformal caregivers |
| spellingShingle | Katharina Linse Elisa Aust René Günther Andreas Hermann Caregivers’ View of Socio-Medical Care in the Terminal Phase of Amyotrophic Lateral Sclerosis—How Can We Improve Holistic Care in ALS? Journal of Clinical Medicine amyotrophic lateral sclerosis end-of-life care palliative care caregiver burden informal caregivers |
| title | Caregivers’ View of Socio-Medical Care in the Terminal Phase of Amyotrophic Lateral Sclerosis—How Can We Improve Holistic Care in ALS? |
| title_full | Caregivers’ View of Socio-Medical Care in the Terminal Phase of Amyotrophic Lateral Sclerosis—How Can We Improve Holistic Care in ALS? |
| title_fullStr | Caregivers’ View of Socio-Medical Care in the Terminal Phase of Amyotrophic Lateral Sclerosis—How Can We Improve Holistic Care in ALS? |
| title_full_unstemmed | Caregivers’ View of Socio-Medical Care in the Terminal Phase of Amyotrophic Lateral Sclerosis—How Can We Improve Holistic Care in ALS? |
| title_short | Caregivers’ View of Socio-Medical Care in the Terminal Phase of Amyotrophic Lateral Sclerosis—How Can We Improve Holistic Care in ALS? |
| title_sort | caregivers view of socio medical care in the terminal phase of amyotrophic lateral sclerosis how can we improve holistic care in als |
| topic | amyotrophic lateral sclerosis end-of-life care palliative care caregiver burden informal caregivers |
| url | https://www.mdpi.com/2077-0383/11/1/254 |
| work_keys_str_mv | AT katharinalinse caregiversviewofsociomedicalcareintheterminalphaseofamyotrophiclateralsclerosishowcanweimproveholisticcareinals AT elisaaust caregiversviewofsociomedicalcareintheterminalphaseofamyotrophiclateralsclerosishowcanweimproveholisticcareinals AT renegunther caregiversviewofsociomedicalcareintheterminalphaseofamyotrophiclateralsclerosishowcanweimproveholisticcareinals AT andreashermann caregiversviewofsociomedicalcareintheterminalphaseofamyotrophiclateralsclerosishowcanweimproveholisticcareinals |