End-of-life decision-making for children with severe developmental disabilities

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I.H. Zaal-Schuller et al. / Research in Developmental Disabilities 49–50 (2016) 235–246
3. Results
The literature search identified 2933 discrete citations. After screening the corresponding titles and abstracts, 35 studies
seemed to be eligible for inclusion according to our criteria. The full texts of these studies were then reviewed in-depth.
Thirty studies had to be excluded: 6 studies that included no, or too few, children with SDDs; 13 studies that did not focus on
EoLDM; 5 studies that did not focus on the parents’ perspective; and 6 studies that appeared to be case reports. An additional
4 studies were subsequently found by searching the reference lists of suitable studies. In the end, nine studies were eligible
for inclusion in our review. The flow of information for our review is summarized in Fig. 1.
In Table 1, we present the characteristics of the 9 included studies. The studies were inconsistent in the terminology used
to describe EoLDs. We encountered, for example, ‘limit or withdraw life support’ (Sharman, Meert, & Sarnaik, 2005),
‘decision-making in the PICU’ (Madrigal et al., 2012), ‘choosing plan of care’ (Guon, Wilfond, Farlow, Brazg, & Janvier, 2014)
and ‘critical decisions’ (October, Fisher, Feudtner, & Hinds, 2014).
All but two studies had a qualitative design, although in some studies questionnaires were used (Guon et al., 2014;
October et al., 2014). The remaining two studies had a quantitative design (Friedman, 2006; Madrigal et al., 2012).
Three of the nine studies prospectively followed parents throughout the decision-making process (Madrigal et al., 2012;
October et al., 2014; Sharman et al., 2005). The other six studies retrospectively investigated parents’ experiences and
preferences. In these studies, the period of time that had elapsed between the EoL decision and study participation varied
considerably, from several months up to nineteen years (Brotherton & Abbott, 2012; Friedman, 2006; Guon et al., 2014;
Morrow, Quine, Loughlin, & Craig, 2008; Rapoport, Shaheed, Newman, Rugg, & Steele, 2013; Reilly, Huws, Hastings, &
Vaughan, 2010).
All studies were conducted in the United Kingdom, United States, Australia or Canada. In Table 2, we present regulations
of parental involvement and conflict resolution in these countries according to the professional guidelines. One study also
included a small percentage of parents from other countries (Guon et al., 2014).
[(Fig._1)TD$FIG]
End-of-life
decision making
Mental
retardation
Parental or
patient
participation
Children
0-21
710
MEDLINE
2043
EMBASE
458
PsycINFO
424
CINAHL
3635 Hits
Deduplication
2933 Articles
identified by
screening on title
35 Potentially relevant
studies retrieved for
review in full
5 Relevant
articles
30 Articles were excluded:
• 6: No or too few children with an SDD
• 13: Not related to EoLDM
• 5: No report of parents
• 6: Case reports
4Articles
• Articles identified from a
reference list search
9Articles in
analysis
Fig. 1. Flow diagram for study selection.