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. 2022 Jan 4;11(1):254.
doi: 10.3390/jcm11010254.

Caregivers' View of Socio-Medical Care in the Terminal Phase of Amyotrophic Lateral Sclerosis-How Can We Improve Holistic Care in ALS?

Katharina Linse  1   2 , Elisa Aust  1 , René Günther  1   2 , Andreas Hermann  3   4   5
Affiliations

Caregivers' View of Socio-Medical Care in the Terminal Phase of Amyotrophic Lateral Sclerosis-How Can We Improve Holistic Care in ALS?

Katharina Linse et al. J Clin Med. .

Abstract

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 (p = 0.004) and without burdening symptoms (p = 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; p = 0.002) and stronger caregiver burden (p = 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.

Keywords: amyotrophic lateral sclerosis; caregiver burden; end-of-life care; informal caregivers; palliative care.

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Conflict of interest statement

The authors declare no conflict of interest.

Figures

Figure 1
Figure 1
Deficits in socio-medical care reported by the caregivers. Multiple answers were possible. Data in percent. GP, general practitioner; MND, motoneuron disease.
Figure 2
Figure 2
Health problems of caregivers caused or exacerbated by the caregiving situation, as reported by themselves. Data in percent.
See this image and copyright information in PMC

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