Original Article

Palliative Medicine
24(4) 435–444
Gender imbalance in pediatric palliative ! The Author(s) 2010
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DOI: 10.1177/0269216309354396
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Mary Ellen Macdonald Oral Health and Society Research Unit, Faculty of Dentistry, McGill University, Montreal, Quebec, Canada; Palliative
Care Program, Montreal Children s Hospital of the McGill University Health Centre, Montreal, Quebec, Canada.
Gillian Chilibeck Centre for Research on Children and Families, McGill University, Montreal, Quebec, Canada
William Affleck Centre for Research on Children and Families, McGill University, Montreal, Quebec, Canada
Susan Cadell Manulife Centre for Healthy Living, Lyle S Hallman Faculty of Social Work, Wilfrid Laurier University, Waterloo, Ontario, Canada

Abstract
We assessed the sampling performance of research on parental perspectives in pediatric palliative care and examined if
and how gender imbalance was treated. We undertook a systematic review of parental perspectives research in pediatric
palliative care using MEDLINE, CINAHL, and PsycINFO. Study selection inclusion criteria were: (1) published between
1988 and 2008; (2) in English; (3) conducted in North America; (4) focused on parents of children aged 0–18 years who
were expected to die or had died; (5) had ‘parent’ in the title; and (6) focused on parents’ experiences or on parents’
perspectives regarding the child’s illness/death. Keyword searches produced a list of 2103 studies, of which 45 met the
criteria for inclusion. The ratio of mothers to fathers participating in the studies was examined. We found that there has
been an increase in research on parental perspectives in pediatric palliative care over the last 5 years, but what
constitutes ‘parental’ in this literature continues to be primarily ‘maternal’. Mothers constituted 75% of the overall
sample of parents. In only four studies was the gender imbalance addressed as one of the limitations of the study. There is
a growing interest in parental perspectives in pediatric palliative care, but the research does not equally reflect the
experiences and needs of mothers and fathers. Gender can shape experiences of both parenthood and grief; balanced
gender sampling and accurate analysis is essential for research on ‘parental perspectives’. Gender imbalance in research
samples, designs, recruitment strategies, and data gathering methods must be addressed.

Keywords
Pediatric palliative care, parental perspectives, gender, sampling, research methods

Background
Pediatric palliative care is a growing field of health care
specialization and research.1,2 A key aspect of improv-
ing palliative care services for children is understanding
the values and needs of the child’s parents.3 In an
attempt to effectively integrate parents in pediatric
end-of-life care and treatment, psychosocial research
is increasingly focusing on parental experiences and
perspectives, including on bereavement. As a result,
‘parental perspectives’ research has become a popular
category in many areas of pediatric palliative care. Both
qualitative and quantitative research has been
conducted, covering areas of concern such as commu-
nication,4–7 decision-making,8–11 bereavement,12–19
perceptions of quality of end-of-life care,20–23 and
even parents’ experiences of research participation.24–26
Parental perspectives research is, however, prone to
certain logistical and ethical challenges. One key meth-
odological difficulty is in the area of sampling. In psy-
chosocial research in general, research samples tend to
include more women than men.27–29 While the majority
of children have both a mother and a father involved in
some capacity in their care, even the most cursory
examination of pediatric palliative care literature sug-
gests that fathers are much less present in research sam-
ples than mothers. Gender differences are relevant to
many areas of parenting,30 including parenting a child
with a chronic illness,31–33 or critical illness.28,34–36

Corresponding author:
Mary Ellen Macdonald, Oral Health and Society Research Unit, Faculty of Dentistry, McGill University, Montreal, Quebec, Canada.
Email: mary.macdonald@mcgill.ca
436 Palliative Medicine 24(4)

Table 1. Keyword search terms

Database (Host) Search Terms Limitations Results

Medline (Ovid) 1) ‘Parent’ (focus, explode, keyword) English language 865

or ‘parent-child relations’ or ‘family’ AND Years: 1988–2008
2) ‘Palliative care’ or ‘terminal care’ or Research Articles
‘hospice care’ or ‘bereavement’
(explode to include ‘grief’) or ‘hospitals, pediatrics’
or ‘pediatric palliative care’ (keyword)
PsycINFO (a) (Ovid) 1) ‘Parents’ (focus, explode) or ‘family’ English language 615
(explode) or ‘parent-child relations’ AND Years: 1988–2008
2) ‘Palliative care’ (explode) or ‘terminally ill patients’ Peer Reviewed
(explode) or ‘grief’ (explode) or ‘hospice’ or
‘pediatric palliative care’ (keyword)
PsycINFO (b) (Ovid) Key concept terms: ‘bereaved parent’ (n ¼ 109), None 249
‘child death’ (n ¼ 79), ‘child’s death’ (n ¼ 39), and
‘parental grief’ (n ¼ 22)
CINAHL (EBSCO) 1) ‘Parents’ (explode) or ‘parental attitudes’ English language 720
(explode) or ‘parent-child relations’ Years: 1988–2008
(explode) AND Journal Articles
2) ‘Terminal care’ or Peer Reviewed
‘hospice care’ or ‘palliative care’ or Research Articles
‘intensive care units, pediatric’ (explode) or
‘bereavement’ (explode to include ‘grief’) or
‘attitudes to death’ or ‘anticipatory grieving’
– 346 duplicates

Imbalanced research samples preclude a careful analy-
sis of these differences.
We therefore sought to examine, and thereby
potentially help to correct, this gender imbalance.
As a first step, the objective of this study was to
assess the sampling performance of research on paren-
tal perspectives in pediatric palliative care and to exam-
ine if and how this bias was treated in study analysis
and findings.
Methods
This project was part of a larger national study on the
socio-cultural aspects of parental bereavement in
Canada funded by the Social Science and Humanities
Research Council of Canada, and approved by the
McGill University Institutional Review Board. The
goal of this study was to quantify the asymmetric rep-
resentation of mothers and fathers in pediatric pallia-
tive care research on parental perspectives. To begin,
we performed a systematic review of research studies on
parental perspectives in pediatric palliative care
research using three databases (MEDLINE,
CINAHL, and PsycINFO). Research parameters
demanded that articles include empirical research, be
published in English, and describe research conducted
between 1988–2008. Keyword ‘Search Terms’ are out-
lined in Table 1.
Two graduate students (GC and WA) independently
examined the resultant 2103 articles, selecting only
those fitting all of the following inclusion criteria:
(a) conducted in North America; (b) focused on
parents of children aged 0–18 years (excluding perinatal
loss); (c) focused on parents of children who were
expected to die or had died; (d) had truncated
‘parent’ in the title of the article (e.g. parent, parents,
parental, parenting etc); (d) focused on parents’ experi-
ences with a dying child (excluding articles specifically
about children who died suddenly/unexpectedly, e.g. to
suicide, murder, sudden infant death syndrome);
and (e) focused on parents’ perspectives regarding
the child’s illness/death (e.g. not on outcomes regarding
parental health).
In total, 45 articles were retrieved (see the
Appendix). Research methods and samples of all 45
articles were analyzed, focusing on the ratio of mothers
to fathers participating in the studies, with attention to
these ratios in study findings. See Table 2 for results.
Results
Increase in parental perspectives research
An unanticipated result of this systematic review was
that it demonstrated an increase in research on paren-
tal perspectives in pediatric palliative care over the
ME Macdonald et al. 437

Table 2. Total mothers, fathers, parents, % mothers, by article, by year

Article #
(see corresponding
YEAR bibliography in Appendix) # Fathers # Mothers Total Parents % Mothers

1988
1989
1990
1991 26 3 18 21 86%
1992 13 n/a n/a n/a n/a
29 15 21 36 58%
1993
1994 42 45 158 203 78%
1 0 10 10 100%
6 39 39 78 50%
1995 27 10 19 29 66%
34 n/a n/a n/a n/a
1996
1997 10 n/a n/a n/a n/a
12 3 5 8 62.5%
37 9 34 43 79%
1998
1999
2000 22 9 69 78 88%
44 14 89 103 86%
2001 9 15 75 90 83%
41 39 137 176 78%
2002 5 n/a n/a n/a n/a
24 20 36 56 64%
2003 2 110 152 262 58%
2004 28 4 66 70 94%
35 19 59 78 75%
2005 7 10 23 33 70%
16 4 8 12 67%
18 24 120 144 83%
21 12 20 32 62.5%
36 5 9 14 64%
39 4 12 16 75%
2006 15 4 8 12 67%
23 20 36 56 64%
25 15 55 70 79%
38 n/a n/a n/a n/a
40 2 4 6 67%
45 11 17 28 61%
2007 4 10 18 28 64%
8 9 19 28 68%
11 1 17 18 94%
14 0 12 12 100%
17 41 153 194 79%
20 17 39 56 70%
(continued)
438 Palliative Medicine 24(4)

Table 2. Continued

Article #
(see corresponding
YEAR bibliography in Appendix) # Fathers # Mothers Total Parents % Mothers

31 0 35 35 100%
32 2 9 11 82%
2008 3 2 5 7 71%
19 17 39 56 70%
30 4 48 52 92%
33 12 62 74 84%
43 3 36 39 92%

last 5 years (Figure 1). In our sample of 45 articles from

1988–2008, 62% (n ¼ 28) were published between 2003
and 2008.

‘Parent’ as synonymous with mother 30

25 28
Research samples: While there is increasing research # Articles
20
on ‘parental perspectives’, what constitutes ‘parental’ in
15
this literature continues to be primarily ‘maternal’.
10
Across the years 1988–2008, the 45 articles in our
sample relied on the participation of 2374 parents, 5 8
6
0 3
1791 (75%) of whom were mothers, and 583 (25%) of
1988–1992 1993–1997 1998–2002 2003–2008
whom were fathers (Figure 2).
In our sample, the percentage of mothers ranged Year of publication
from 50–100% of research samples, whereas the per-
centage of fathers ranged from 0–50%; 40% of the Figure 1. Number of published studies by publication year.

100
90
80
70
mothers : fathers
Percentage

60
50
40
30
20
10
0
1991

1992

1993

1994

1995

1996

1997
1998

1999

2000

2001

2002

2003

2004

2005

2006

2007
2008

Overall average

Publication year

Fathers
Mothers

Figure 2. Percentage of mothers and fathers in published studies, by publication year.

ME Macdonald et al.
articles were based on samples with more than 75%
mothers, and 42% of the articles had samples with
less than 25% fathers. Three of the articles were
based on samples with 100% mothers and five articles
did not provide a gender ratio breakdown.
One article did have equal representation of mothers
and fathers; interestingly, this was based on a study of
couples. While many of the other articles included cou-
ples, it was often not clear exactly how the couples
participated in the research (e.g. together as a couple,
or separately as individuals). Of 45 articles, 12 explicitly
mentioned couples in the data, but complete details
were not provided on how exactly the couple contrib-
uted to the sampling (e.g. number of couples in the
sample; whether the couples participated individually
in interviews or together). Of the articles that did
include couples and that did provide full details
(n ¼ 19), 34 couples participated as couples, whereas
416 individuals from 208 couples participated as indi-
viduals. Interestingly, if all known couples, regardless
of how they participated in the studies (e.g. together or
separate) are removed from the data set, the overall
ratio of mothers to fathers is even more dramatic,
with 84% of the sample being mothers and 16% fathers
(See Table 3).
Of our 45 articles, five did not describe the gender of
participants. Of the remaining 40 articles, 23 used qual-
itative methods, 11 used quantitative methods, and six
used mixed methods. Table 3 provides a breakdown of
gender ratios by study methods.
Research analysis: In the majority of articles, there
was no explicit reference to the sampling imbalance in
the study findings. In 34 of the articles, there was no
mention of the sampling imbalance, and no gender ana-
lysis was performed. In seven studies, while the gender
imbalance was not addressed, some gender differences
were discussed in the analysis (e.g. a difference in
Table 3. Gender ratios by study method
Qualitative Quantitative
n ¼ 23 n ¼ 11
studies studies
Including
Couples:
Mothers 73% (578) 78% (898)
Fathers 28% (211) 22% (311)
Excluding
Couples:
Mothers 82% (199) 82% (747)
Fathers 18% (44) 18% (160)
439
response to one question between mothers and fathers).
In only four studies was the gender imbalance
addressed as one of the limitations to the study.
Discussion
Mothering and fathering can involve different and
varied roles, responsibilities, societal expectations and
physical requirements.30 For example, men and women
are expected, encouraged, and permitted to grieve and
care for the dying in gendered ways.37–47 Literature
shows how gendered expectations and experiences of
both parenthood and bereavement simultaneously
shape the needs, health-seeking behaviors and abilities
of bereaved mothers and fathers to access support, seek
treatment or effectively utilize available health and
social policies.28,42,48 Our review suggests research on
‘parental perspectives’ in pediatric palliative care has
become increasingly popular, especially in the last 5
years. While this increase is important for the advance-
ment of the field, our review also suggests that research-
ers are uncritically using the term ‘parent’ to describe
participant samples that rarely have equal representa-
tion of fathers and mothers. While 75% of research
samples of ‘parents’ are actually mothers, and despite
the fact that gender shapes experiences of parenting,
researchers are failing to include a careful analysis of
this gender imbalance in research results. In addition,
journal editors and reviewers have not required
researchers to acknowledge the gender imbalance in
their sample and, at a minimum, address this as a
limitation.
While this article is the first to quantify this bias, our
results are not surprising. Polit and Beck discovered an
identical imbalanced ratio of women to men in their
review of general nursing research.27 Further, research-
ers in palliative care have been aware of this bias
for many years. For example, Chesler and Parry28
Mixed Methods All Articles
n¼6 n ¼ 40
studies studies
82% (315) 75% (1791)
18% (61) 25% (583)
94% (221) 84% (1167)
6% (15) 16% (219)
440
wrote that fathers’ voices were under-represented in the
literature. While perhaps not unexpected, there are seri-
ous implications of this bias for clinical practice: by
over-representing mothers and under-representing
fathers, this research runs the risk of reinforcing the
social assumption that mothers are necessarily the pri-
mary caregivers of children, while simultaneously mar-
ginalizing men’s parenting, caregiving and bereavement
experiences, which in combination may inadvertently
result in the creation of gender-biased interventions.
The findings of this study suggest areas for future
research. A starting point would be addressing why
this imbalance exists in palliative care research. We
believe that looking closely at data collection methods
– both qualitative and quantitative, according to our
findings – is an important place to start. As in any
research project, recruiting and sampling must be
adapted to the needs of the research participants. It is
possible that recruiting mothers for research addressing
childhood illness, end-of-life care, death and bereave-
ment has been more successful than fathers because the
recruitment strategies and data collection methods are
more mother-friendly. For example, recruitment that
proceeds with a phone call to the family home may
be more likely to reach mothers. Further, mothers are
often more likely than fathers to play the role of
spokesperson or gatekeeper for the family.49,50 It has
also been suggested in the literature that data collection
via interview methods may be more conducive to
women’s styles of communication.51,52 Research that
requires the participant to come to the hospital to com-
plete a questionnaire or interview may be more success-
ful with mothers, who are more likely to accompany the
child to the clinic because their work situations are
often more flexible than those of fathers.53,54 Our find-
ings suggest that proactively including couples in
research sampling may be one way to increase the par-
ticipation of fathers.
Gender socialization theory suggests that men are
socialized into a more non-verbally expressive manner
than women; as such, the expression of emotions is
often seen as inappropriate for men. The idea of shar-
ing personal feelings and experiences with others – par-
ticularly strangers, as researchers most often are – may
be uncomfortable for many fathers. To contend with
this socialization, there are a number of strategies that
researchers can employ to increase the recruitment of
fathers. For example, there are research methods that
do not rely solely on verbal articulation and
face-to-face interaction that may be more conducive
to authentically representing male expression, as well
as encouraging fathers who might be dissuaded by the
anticipation of having to talk about their emotional
experiences. Such methods include photovoice, for
which participants are asked to represent their
Palliative Medicine 24(4)
experiences through photographic images and then
invited to speak about the photos.55 When using narra-
tives, participants are encouraged to reflect and write
about their experiences in a solitary environment and
then share the writing with a researcher.56 Literary
forms such as poetry57 or artistic forms such as wood
carving can enable some participants to convey emo-
tional experiences that they may have difficulty fitting
in the confines of ordinary language. Research also
suggests that men tend towards a more instrumental
style of grieving, with a focus on concrete problem sol-
ving.38 Therefore, when recruiting fathers, researchers
might consider emphasizing the health and social ben-
efits the study hopes to have for other parents; this is a
way to emphasize the concrete utility of fathers’
contributions.
Finally, attempts to accommodate gender differences
in research always run the risk of further reinforcing
gender assumptions and stereotypes. Researchers must
be attentive to the nuances and complexities of gender
identities and roles; not all parents will identify with or
conform to gender patterns, which also vary
cross-culturally.
Limitations
The parameters we used in conducting our search of the
published literature constitute the principal limitation of
this study. Our focus was on English articles from North
America with the word ‘parent’ in the title; we imposed
these limitations in order to create a manageable data
set. While expanding the data to include articles from
outside of North America and in other languages would
increase our data, our knowledge of the field of pediatric
palliative care suggests that it would not substantially
change our research findings. A more substantial limita-
tion, however, is that all articles that specifically focused
on mothers or fathers would have been excluded from
our sampling if they used ‘mother’ or ‘father’ or ‘couple’
in the title, and not ‘parent’. While this research would
be interesting to analyze, it does not change the finding
that many researchers are using the term ‘parent’ to gloss
imbalanced samples.
Conclusion
Amidst the growing interest in research on parental per-
spectives in pediatric palliative care, research claiming to
provide ‘parental perspectives’ does not equally reflect the
experiences and needs of mothers and fathers. The deficit
in the numbers of fathers in studies suggests that we need to
be circumspect in drawing conclusions and building inter-
ventions based on study findings to date. Given how pro-
foundly gender can shape experiences of both parenthood
and grief, balanced gender sampling and accurate analysis
ME Macdonald et al.
is essential for research on ‘parental perspectives’. It is thus
essential that we pay attention to which parents are parti-
cipating in our research and are thereby informing our
understandings of ‘parental’ values and needs and any
resultant interventions. Further, it is essential that future
research address the complex reasons for the gender imbal-
ance in research samples, including the gendered assump-
tions inherent in research designs, recruitment strategies,
and data gathering methods.
Acknowledgements
The authors would like to acknowledge Dr. Chris Feudtner
for his editorial assistance on earlier drafts of this paper.
Appendix
The following articles were used in the study.
1. Braun MJ, Berg DH. Meaning reconstruction in
the experience of parental bereavement. Death
Stud 1994; 18: 105–129.
2. Curley MA, Meyer EC. Parental experience
of highly technical therapy: survivors and non-
survivors of extracorporeal membrane oxygenation
support. Pediatr Crit Care Med 2003; 4: 214–219.
3. D’Agostino NM, Berlin-Romalis D, Jovcevska V,
Barrera M. Bereaved parents’ perspectives on their
needs. Palliat Support Care 2008; 6: 33–41.
4. Davies B, Collins J, Steele R, Cook K, Distler V,
Brenner A. Parents’ and children’s perspectives of
a children’s hospice bereavement program.
J Palliat Care 2007; 23: 14–23.
5. Davies B, Connaughty S. Consider this. . .
Pediatric end-of-life care: lessons learned from
parents. J Nurs Admin 2002; 32: 5–6.
6. Drenovsky CK. Anger and the desire for retribu-
tion among bereaved parents. Omega J Death
Dying 1994; 29: 303–312.
7. Heller KS, Solomon MZ, Team for the Initiative for
Pediatric Palliative Care Investigator. Continuity of
care and caring: what matters to parents of children
with life-threatening conditions. J Pediatr Nurs
2005; 20: 335–346.
8. Hendricks-Ferguson VL. Parental perspectives of
initial end-of-life care communication. Int J Palliat
Nurs 2007; 13: 522–531.
9. Hinds PS, Oakes L, Furman W, et al. End-of-life
decision making by adolescents, parents, and
healthcare providers in pediatric oncology:
research to evidence-based practice guidelines.
Cancer Nurs 2001; 24: 122–134.
10. Hinds PS, Oakes L, Furman W, et al. Decision
making by parents and healthcare professionals
when considering continued care for pediatric patients
with cancer. Oncol Nurs Forum 1997; 24: 1523–1528.
441
11. Hsiao J, Evan EE, Zeltzer LK. Parent and child
perspectives on physician communication in pedi-
atric palliative care. Palliat Suppor Care 2007; 5:
355–365.
12. Kavanaugh K. Parents’ experience surrounding
the death of a newborn whose birth is at the
margin of viability. JOGNN 1997; 26: 43–51.
13. Klass D. The inner representation of the dead
child and the worldviews of bereaved parents.
Omega J Death Dying 1992; 26: 255–272.
14. Konrad SC. What parents of seriously ill children
value: Parent-to-parent connection and mentor-
ship. Omega J Death Dying 2007; 55: 117–130.
15. Macdonald ME, Liben S, Cohen SR. Truth and
consequences: parental perspectives on autopsy
after the death of a child. Pediatr Intens Care
Nurs 2006; 7: 6–15.
16. Macdonald ME, Liben S, Carnevale FA, et al.
Parental perspectives on hospital staff members’
acts of kindness and commemoration after a
child’s death. Pediatrics 2005; 116: 884–890.
17. Mack JW, Cook EF, Wolfe J, et al.
Understanding of prognosis among parents of
children with cancer: parental optimism and the
parent–physician interaction. J Clin Oncol 2007;
25: 1357–1362.
18. Mack JW, Hilden JM, Watterson J, et al Parent
and physician perspectives on quality of care at the
end of life in children with cancer. J Clin Oncol
2005; 23: 9155–9161.
19. Meert KL, Eggly S, Pollack M, et al. Parents’
perspectives on physician–parent communication
near the time of a child’s death in the pediatric
intensive care unit. Pediatr Crit Care Med 2008;
9: 2–7.
20. Meert KL, Eggly S, Pollack M, et al. Parents’
perspectives regarding a physician-parent confer-
ence after their child’s death in the pediatric inten-
sive care unit. J Pediatr 2007; 151: 50.
21. Meert KL, Thurston CS, Briller SH. The spiritual
needs of parents at the time of their child’s death
in the pediatric intensive care unit and during
bereavement: a qualitative study. Pediatr Crit
Care Med 2005; 6: 420–427.
22. Meert KL, Thurston CS, Sarnaik AP. End-of-life
decision-making and satisfaction with care:
Parental perspectives. Pediatr Crit Care Med
2000; 4: 214.
23. Meyer EC, Ritholz MD, Burns JP, Truog RD.
Improving the quality of end-of-life care in the
pediatric intensive care unit: parents’ priorities
and recommendations. Pediatrics 2006; 117:
649–657.
24. Meyer EC, Burns JP, Griffith JL, Truog RD.
Parental perspectives on end-of-life care in the
442
pediatric intensive care unit. Crit Care Med 2002;
30: 226–231.
25. Michelson KN, Koogler TK, Skipton K, Sullivan
C, Frader J. Parents’ reactions to participating in
interviews about end-of-life decision making. J
Palliat Med 2006; 9: 1329–1338.
26. Neidig JR, Dalgas-Pelish P. Parental grieving and
perceptions regarding health care professionals’
interventions. Issues Comp Pediatr Nurs 1991; 14:
179–191.
27. Oliver RC, Fallat ME. Traumatic childhood
death: how well do parents cope? J Trauma
Injury Infection Crit Care 1995; 39: 303–307; dis-
cussion 307–308.
28. Pector EA. How bereaved multiple-birth parents
cope with hospitalization, homecoming, disposi-
tion for deceased, and attachment to survivors.
J Perinatol 2004; 24: 714–722.
29. Ponzetti JJ. Bereaved families: A comparison of
parents’ and grandparents’ reactions to the
death of a child. Omega J Death Dying 1992; 25:
63–71.
30. Pritchard M, Burghen E, Srivastava DK, et al.
Cancer-related symptoms most concerning
to parents during the last week and last
day of their child’s life. Pediatrics 2008; 121:
e1301–e1309.
31. Riley LP, LaMontagne LL, Hepworth JT,
Murphy BA. Parental grief responses and personal
growth following the death of a child. Death Stud
2007; 31: 277–299.
32. Rini A, Loriz, L. Anticipatory mourning in par-
ents with a child who dies while hospitalized.
J Pediatr Nurs 2007; 22: 272–282.
33. Rodrigue JR, Cornell DL, Howard RJ. Pediatric
organ donation: what factors most influence par-
ents’ donation decisions? Pediatr Crit Care Med
2008; 9: 180–185.
34. Schwab R. Bereaved parents and support group
participation. Omega J Death Dying 1995; 32:
49–61.
35. Seecharan GA, Andresen EM, Norris K, Toce SS.
Parents’ assessment of quality of care and grief
following a child’s death. Arch Pediatr Adolesc
Med 2004; 158: 515–520.
36. Sharman M, Meert KL, Sarnaik AP.
What influences parents’ decisions to limit or with-
draw life support? Pediatr Crit Care Med 2005; 6:
513–518.
37. Sormanti, M, August J. Parental bereavement:
Spiritual connections with deceased children.
Am J Orthopsychiatr 1997; 67: 460–469.
38. Steele R, Davies B. Impact on parents when a
child has a progressive, life-threatening illness.
Int J Palliat Nurs 2006; 12: 576–585.
Palliative Medicine 24(4)
39. Toller PW. Negotiation of dialectical contradic-
tions by parents who have experienced the death
of a child. J Appl Commun Res 2005; 33: 46–66.
40. Tomlinson D, Capra M, Gammon J, et al.
Parental decision making in pediatric cancer
end-of-life care: using focus group methodology
as a prephase to seek participant design input.
Eur J Oncol Nurs 2006; 10: 198–206.
41. Wheeler I. Parental bereavement: The crisis of
meaning. Death Stud 2001; 25: 51–66.
42. Wheeler I. The role of meaning and purpose in life
in bereaved parents associated with a self-help
group: Compassionate friends. Omega J Death
Dying 1993–94; 28: 261–271.
43. Widger K, Picot C. Parents’ perceptions of the
quality of pediatric and perinatal end-of-life care.
Pediatr Nurs 2008; 34: 53–58.
44. Wolfe J Klar N, Grier HE, et al. Understanding of
prognosis among parents of children who died of
cancer: impact on treatment goals and integration
of palliative care. JAMA 2000; 284: 2469–2475.
45. Woodgate RL. Living in a world without closure:
reality for parents who have experienced the death
of a child. J Palliat Care 2006; 22: 75–82.
Acknowledgements
This research was supported by Social Science and
Humanities Research Council Grant #410-2007-0709; ME
Macdonald was supported by a salary award from the
CIHR NET: Family Caregiving in Palliative and End of
Life Care. We would like to thank Dr Chris Feudtner for
his valuable feedback on this manuscript. Mary Ellen
Macdonald had full access to all the data in the study and
takes responsibility for the integrity of the data and the accu-
racy of the data analysis.
References
1. Liben S, Papadatou D, Wolfe J. Paediatric palliative care:
challenges and emerging ideas. Lancet 2008; 371(9615):
852–864.
2. Steele R, Bosma H, Fletcher, et al. Research priorities in
pediatric palliative care: a Delphi study. J Palliat Care
2008; 24: 229–239.
3. Canadian Hospice Palliative Care Association. Pediatric
palliative care: guiding principles and norms of practice.
Ontario, Canada: Canadian Hospice Palliative Care
Association, 2006.
4. Carnevale FA. Examining parental communication in
pediatric critical care. Pediatr Crit Care Med 2008; 9: 113.
5. Hendricks-Ferguson VL. Parental perspectives of initial
end-of-life care communication. Int J Palliat Nurs 2007;
13: 522–531.
6. Hsiao JL, Evan EE, Zeltzer LK. Parent and child perspec-
tives on physician communication in pediatric palliative
care. Palliat Support Care 2007; 5: 355–365.
ME Macdonald et al.
7. Meert KL, Eggly S, Pollack M, et al. Parents’ perspec-
tives on physician-parent communication near the time of
a child’s death in the pediatric intensive care unit.
[see comment]. Pediatr Crit Care Med 2008; 9: 2–7.
8. Meert KL, Thurston CS, Sarnaik AP. End-of-life
decision-making and satisfaction with care: Parental per-
spectives. Pediatr Crit Care Med 2000; 1: 179.
9. Rodrigue JR, Cornell DL, Howard RJ. Pediatric organ
donation: what factors most influence parents’ donation
decisions? [see comment]. Pediatr Crit Care Med 2008; 9:
180–185.
10. Sharman M, Meert KL, Sarnaik AP. What influences
parents’ decisions to limit or withdraw life support?
Pediatr Crit Care Med 2005; 6: 513–518.
11. Hinds PS, Oakes L, Furman W, Foppiano P; Olson M S;
Quargnenti A, et al. Decision making by parents and
healthcare professionals when considering continued
care for pediatric patients with cancer. Oncology
Nursing Forum 1997; 24: 1523–1528.
12. Rando, T.A. (Ed.) Parental Loss of a Child. 1986.
Champaign, IL, USA: Research Press Company.
13. Braun MJ, Berg DH. Meaning reconstruction in the
experience of parental bereavement. Death Stud 1994;
18: 105–129.
14. D’Agostino NM, Berlin-Romalis D, Jovcevska V,
Barrera M. Bereaved parents’ perspectives on their
needs. Palliat Support Care 2008; 6: 33–41.
15. Klass D. The inner representation of the dead child and
the worldviews of bereaved parents. Omega J Death
Dying 1992; 26: 255–272.
16. Sormanti M, August J. Parental bereavement: Spiritual
connections with deceased children. Am J Orthopsychiatr
1997; 67: 460–469.
17. Woodgate RL. Living in a world without closure: reality
for parents who have experienced the death of a child.
J Palliat Care 2006; 22: 75–82.
18. Wheeler I. The role of meaning and purpose in life in
bereaved parents associated with a self-help group: com-
passionate friends. Omega J Death Dying 1993; 28:
261–271.
19. Schwab R. Bereaved parents and support group partici-
pation. Omega J Death Dying 1995; 32: 49–61.
20. Contro N, Larson J, Scofield S, Sourkes B, Cohen H.
Family perspectives on the quality of pediatric palliative
care. Arch Pediatr Adolesc Med 2002; 156: 14–19.
21. Meyer EC, Ritholz MD, Burns JP, Truog RD. Improving
the quality of end-of-life care in the pediatric intensive
care unit: parents’ priorities and recommendations.
Pediatrics 2006; 117: 649–657.
22. Seecharan GA, Andresen EM, Norris K, Toce SS.
Parents’ assessment of quality of care and grief following
a child’s death. Arch Pediatr Adolesc Med 2004; 158:
515–520.
23. Widger K, Picot C. Parents’ perceptions of the quality of
pediatric and perinatal end-of-life care. Pediatr Nurs
2008; 34: 53–58.
24. Michelson KN, Koogler TK, Skipton K, Sullivan C,
Frader J. Parents’ reactions to participating in interviews
about end-of-life decision making. J Palliat Med 2006; 9:
1329–1338.
443
25. Dyregrov K. Bereaved parents’ experience of research
participation. Soc Sci Med 2004; 58: 391–400.
26. Hynson JL, Aroni R, Bauld C, Sawyer SM. Research
with bereaved parents: a question of how not why.
Palliat Med 2006; 20: 805.
27. Polit DF, Beck CT. Is there gender bias in nursing
research? Res Nurs Health 2008; 31: 417–427.
28. Chesler MA, Parry C. Gender roles and/or styles in crisis:
An integrative analysis of the experiences of fathers of
children with cancer. Qual Health Res 2001; 11: 363.
29. Dallas C, Burton L. Health disparities among men from
racial and ethnic minority populations. Annu Rev Nurs
Res 2004; 22: 77–100.
30. Doucet A. There’s a huge gulf between me as a male carer
and women: gender, domestic responsibility, and the
community as an institutional arena. Comm Work Fam
2000; 3: 163–184.
31. Katz S. When the child’s illness is life threatening: impact
on the parents. Pediatr Nurs 2002; 28: 453–464.
32. Pelchat D, Lefebvre H, Levert MJ. Gender differences
and similarities in the experience of parenting a child
with a health problem: current state of knowledge.
J Child Health Care 2007; 11: 112.
33. McGrath P, Chesler M. Fathers’ Perspectives on the
treatment for pediatric hematology: Extending the find-
ings. Issues Compr Pediatr Nurs 2004; 27: 39–61.
34. Brown KAE, Barbarin OA. Gender differences in parenting
a child with cancer. Soc Work Health Care 1996; 22: 53–71.
35. Cook J. Influence of gender on the problems of parents of
fatally ill children. J Psychosoc Oncol 1984; 2: 71–91.
36. Davies B, Dudmundsdottir M, Worden B, Orloff S,
Sumner L, Brenner P. ‘‘Living in the dragon’s shadow’’:
Fathers’ experiences of a child’s life-limiting illness.
Death Stud 2004; 28: 111–135.
37. Hallam E. Death and the transformation of gender in
image and text. In: Field D, Hockey J, Small N (eds)
Death, gender and ethnicity. London: Routledge, 1997,
p.108–123.
38. Martin T, Doka KJ. Men don’t cry—women do: trans-
cending gender stereotypes of grief. Philadelphia, PA:
Brunner/Mazel, 2000.
39. Riches G, Dawson P. ’An intimate loneliness’: evaluating
the impact of a child’s death on parental self-identity and
marital relationships. J Fam Ther 1996; 18: 1–22.
40. Littlewood JL, Cramer D, Hoekstra J, Humphrey GB.
Gender differences in parental coping following their
child’s death. Br J Guid Counc 1991; 19: 139–148.
41. Field D, Hockey JL, Small N. Death, gender and ethni-
city. London: Routledge, 1997.
42. Schwab R. Gender differences in parental grief. Death
Stud 1996; 20: 103–113.
43. Zinner ES. Being a man about it: The marginalization of
men in grief. Illness Crisis Loss 2000; 8: 181–188.
44. Gerstel N, Gallagher SK. Men’s caregiving: Gender and the
contingent character of care. Gender Soc 2001; 15: 197–217.
45. Sidmore KV. Parental bereavement: Levels of grief as
affected by gender issues. Omega J Death Dying 1999;
40: 351–374.
46. Hockey J. Women in grief: cultural representation and
social practice. In: Field D, Hockey J, Small N (eds)
444
Death, gender and ethnicity. London: Routledge, 1997,
p.89–107.
47. Thompson N. Masculinity and Loss. In: Field D, Hockey
J, Small N (eds) Death, gender and ethnicity. London:
Routledge, 1997, p.76–88.
48. Murphy S, Johnson L, Lohan J, Tapper V. Bereaved
parents’ use of individual, family, and community
resources 4 to 60 months after a child’s violent death.
J Fam Comm Health 2002; 25: 71–82.
49. Allen SM, Hawkins AJ. Maternal gatekeeping: Mothers’
beliefs and behaviors that inhibit greater father invol-
vement in family work. J Marriage Fam 1999; 61:
199–212.
50. Gaunt R. Biological essentialism, gender ideologies, and
role attitudes: What determines parents’ involvement in
child care. Sex Roles 2006; 55: 523–533.
51. Robertson JM, Lin CW, Woodford J, Danos KK, Hurst
MA. The (un)emotional male: Physiological, verbal, and
written correlates of expressiveness. J Mens Stud 2001; 9:
393–412.
Palliative Medicine 24(4)
52. Rochlen AB, Land LN, Wong YJ. Male restrictive emo-
tionality and evaluations of online versus face-to-face
counseling. Psychol Men Masc 2004; 5: 190–200.
53. Carroll, R. & Reilly, S. (1996). The therapeutic approach
to the child with feeding difficulty: II, Management and
treatment. In P. B. Sullivan & L. Rosenbloom, (Eds.),
Clinics in Developmental Medicine No. 140. Feeding
the Disabled Child (pp. 117–132). London, UK:
MacKeith Press.
54. Leiter V, Krauss MW, Anderson B, Wells N. The con-
sequences of caring: Effects of mothering a child with
special needs. J Fam Issues 2004; 25: 379.
55. Szto P, Furman R, Langer C. Poetry and photography:
An exploration into expressive/creative qualitative
research. Qual Soc Work 2005; 4: 135–156.
56. Sandelowski M. Telling stories: Narrative approaches in
qualitative research. Image J Nurs Sch 1991; 23: 161–166.
57. Furman R. Using poetry and narrative as qualitative
data: Exploring a father’s cancer through poetry.
Fam Syst Health 2004; 22: 162–170.
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