Being a caregiver of a relative with a prolonged disorder of consciousness living at home: A scoping review

ABSTRACT

As recent reviews of the literature have shown, a growing number of studies have focused on the burden of caregivers of people living with a prolonged disorder of consciousness. However, none of these reviews have focused specifically on caregivers in the home care setting. It is therefore difficult to have a state of knowledge specific to this setting, even though many POCD patients live at home once their condition has stabilized. For this reason, we decided, after completing recent literature reviews, to conduct a quantitative and qualitative analysis of publications presenting data on the quality of life of caregivers whose relative with PDOC lives at home. While all the studies agree that the presence of a person with PDOC is a heavy burden for the caregiver, some authors refute the idea defended by others that this burden is the same whether the patient lives at home or in care facilities. All the studies also stress the need for public material and organisational assistance, without which caregivers find themselves in a state of great financial and psychological distress. Such support would also help to strengthen internal resilience factors.

KEYWORDS:

• Patients with PDOC
• At home caregiver
• Burden
• Scoping review

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1 Final Scientific Report: THE DAILY LIFE OF PEOPLE IN A CHRONIC VEGETATIVE STATE OR MINIMALLY CONSCIOUS STATE IN DEDICATED UNITS. https://www.firah.org/upload/l-appel-a-projets/projets-laureats/2018/evc-epr-unites-dediees/rapport-final-scientifique-evc-epr-ud.pdf

2 The daily life of people in a chronic vegetative state or a minimally conscious state receiving hospital-at-home care. Collaboration: National Union of Associations for Families of Those with Cranial Trauma and Brain Injuries (UNAFTC), Head Trauma in France, The University of Rouen Normandy, The University of Caen Normandy. Management committee: Anne Boissel (Professor associate) & Professor Nadine Proia-Lelouey (Scientific Leaders), Dr Philippe Petit, Professor François Tasseau, Professor Eric Verin, (Representatives of Associations).

3 https://www.rcplondon.ac.uk/news/prolonged-disorders-consciousness-new-guidelines-help-doctors-and-families.

4 http://www.salute.gov.it/imgs/C_17_pubblicazioni_1377_allegato.pdf.

5 Linee di indirzzo per l’assistenza alle personne in stato vegetativo e stato di minima coscienza Approvate in CONFERENZA UNIFICATA nella seduta del 5 maggio 2011. http://www.salute.gov.it/portale/documentazione/p6_2_2_1.jsp?lingua=italiano&id=1535.

6 For detailed analyses, see Soeterik et al., 2017 and Chinner et al., 2021.

7 Which is why we use the generic term “care facilities”.

8 Quote from the abstract

9 [seeking autonomy in care]

10 This type of facility is also recommended by Il Libro Bianco and we have found out that there is at least one such facility in Italy (in Rome).