The impact of prolonged disorders of consciousness on family caregivers’ quality of life – A scoping review

Figures & data

Figure 1. Flow diagram of the source selection process for this scoping review.

Table 1. Table showing the number of articles addressing each domain, and the percentage of all articles, per article methodology, with outcomes addressing each WHOQOL facet (WHOQOL Group, 1998).

WHOQOL domain (number of articles addressing the domain)	WHOQOL facet	% of all articles addressing each facet (number of articles)
		Quantitative	Qualitative
Physical health (n = 30)	Pain & discomfort	10 (5)	8 (4)
	Sleep & rest	8 (4)	6 (3)
	Energy & fatigue	6 (3)	6 (3)
	Mobility	0	0
	Activities of daily living	6 (3)	14 (7)
	Dependence on medicinal substances/medical aids	4 (2)	0
	Work capacity	22 (11)	16 (8)
	General physical health*	20 (10)	2 (1)
Psychological (n = 49)	Positive feelings	2 (1)	34 (17)
	Thinking, learning, memory & concentration	34 (17)	14 (7)
	Self-esteem	0	6 (3)
	Body-image & appearance	0	0
	Negative feelings	52 (26)	40 (20)
	Spirituality/religion/personal beliefs	18 (9)	14 (7)
	General mental health*	24 (12)	8 (4)
Social relationships (n = 41)	Personal relationships	34 (17)	40 (20)
	Social support	24 (12)	22 (11)
	Sexual activity	2 (1)	2 (1)
Environment (n = 40)	Freedom, physical safety & security	14 (7)	22 (11)
	Home environment	4 (2)	2 (1)
	Financial resources	26 (13)	28 (14)
	Health & social care: accessibility & quality	10 (5)	34 (17)
	Opportunities for acquiring new information & skills	16 (8)	10 (5)
	Participation in recreation/leisure activities	10 (5)	16 (8)
	Physical environment (pollution/noise/traffic/climate)	0	0
	Transport	0	2 (1)
	General environmental QOL*	6 (3)	0

*Additional facets added by the lead reviewer.

Table 2. A summary of the themes identified in the content analysis within each WHOQOL domain (WHOQOL Group, 1998), and the percentage of articles within the domain that contributed to each theme by methodology.

WHOQOL domain (number of articles addressing the domain)	Main themes	% of articles within domain addressing each theme (number of articles)
		Quantitative	Qualitative
Physical health (n = 30)	Caring as a barrier to employment and occupational productivity	40.0 (12)	23.33 (7)
	Physical impact	43.33 (13)	16.67 (5)
	Disrupted daily life	10.0 (3)	30.0 (9)
Psychological (n = 49)	Psychological distress and burden	53.06 (26)	20.41 (10)
	Internal resources for coping	28.57 (14)	20.41 (10)
	Loss without death	4.08 (2)	24.49 (12)
	Time as a source of pain and healing	4.08 (2)	16.33 (8)
Social (n = 41)	Social support: old and new relationships	46.34 (19)	48.78 (20)
	Changing relationship with their family member	2.44 (1)	21.95 (9)
	Fractious relationships with medical staff	0	14.63 (6)
Environmental (n = 40)	A burdensome care system	20.0 (8)	47.5 (19)
	(Lack of) Time for self	25.0 (10)	37.50 (15)
	Financial pressures	25.0 (10)	35.0 (14)

WHOQOL Group. (1998). Development of the world health organization WHOQOL-BREF quality of life assessment. Psychological Medicine, 28(3), 551–558. https://doi.org/10.1017/S0033291798006667

 PubMed Web of Science ®Google Scholar