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

Table 1
Characteristics of included studies.
Source
Study
participants, n
Nationality
Patients, n
Age
Sex
Underlying diagnosis of
patients, (n)
Decision
Factors
described d Timing of
data collection
Study design (data
collection;
analysis)
Relevance/
Credibility
—Qualitative Health
Research
Friedman (2006)—
Journal of the
American Medical
Directors Association
Guon et al. (2014)—
American Journal of
Medical Genetics
Madrigal et al. (2012)—
Critical Care Medicine
Morrow et al. (2008)—
Archives of Disease in
Childhood
October et al. (2014)—
Pediatric Critical
Care Medicine
Rapoport et al. (2013)—
Pediatrics
Mothers, n =20 UK b n =20
Age: 1–15 y
Sex: 11 girls
and 9 boys
Parents and/or
guardians, n =60
Mothers, n =98
Fathers, n =30
US c n =60
Age: 2–32 y
Sex: 31 girls
and 29 boys
83% US, 5%
Canada,
5% UK, 7%
from 12 other
countries
n = 107
Age and sex
not specified
Parents, n =87 US n =75
Age: 0–19 y
Sex not clearly
specified
Mothers, n =17
Fathers, n =2
Foster mother, n =1,
Sibling, n =1
Mothers, n =25
Fathers, n =18
Mothers, n =6
Fathers, n =5
Australia n =21
Age: 4–19 y
Sex not specified
US n =29
Age: 1–10 y
Sex: 16 girls and
13 boys
Canada n =7
All children died
Age and sex not
specified
Cystic fibrosis, global Gastrostomy
developmental delay, placement
faltering growth, cerebral
palsy, congenital
malformations,
neurodegenerative
disorders (numbers not
specified)
Severe developmental
disabilities and complex
medical problems
Trisomy 13, Trisomy 18
E-I
P-I
G-F
Retrospective
(2 mo–7 y 8 mo
after gastrostomy
placement)
Qualitative study—
(in-depth interviews;
discourse analysis)
Resuscitation G-F Before and after Quantitative study—
provision of written (structured interviews by
information phone and review of
records; statistical
analysis)
Continuance of
pregnancy
Choice of plan of
care (full
interventions,
comfort care,
combination of full
interventions and
comfort care)
Cardiovascular,
Medical decisions
respiratory, congenital or in PICU a setting
genetic, neuromuscular,
metabolic, malignancy
(numbers not specified)
Quadriplegic cerebral
palsy with feeding
difficulties
Haematologic/oncologic
(10), respiratory (6),
neurologic (4), trauma (4),
gastrointestinal (2),
metabolic/genetic (2),
sepsis/shock (1)
Genetic or suspected
genetic conditions
Interventions for
feeding difficulties
Critical treatment
decision (decision
to initiate, escalate,
withdraw lifesustaining
therapies)
Forgoing artificial
nutrition and
hydration (FANH)
G-F Retrospective Mixed methods study—
(a computer assisted
self-completion
questionnaire with
10 open-ended questions
and 12 demographic
questions; statistical
analysis and thematic
qualitative content
analysis)
P-I Prospective Quantitative study—
(interviews and
standardized
instruments; statistical
analysis)
E-I
G-F
Prospective
Qualitative study—
(focus groups; constant
comparative method)
G-F Prospective Mixed methods study—
(structured interviews by
means of Good Parent
Tool and Good Parent
Ranking Exercise;
thematic qualitative
content analysis)
P-I
G-F
Retrospective
(1.5–5 y after the
death of the child)
Qualitative study—
(in-depth interviews;
interpretive description
approach)
High/High
High/low
High/high
High/
moderate
High/high
Low/low
High/high
I.H. Zaal-Schuller et al. / Research in Developmental Disabilities 49–50 (2016) 235–246 239