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Palliative Medicine
http://pmj.sagepub.com/content/23/6/526
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DOI: 10.1177/0269216309104060
2009 23: 526 originally published online 7 April 2009 Palliat Med
L Monterosso, LJ Kristjanson and MB Phillips
The supportive and palliative care needs of Australian families of children who die from cancer

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The supportive and palliative care needs of Australian
families of children who die from cancer
L Monterosso WA Centre for Cancer and Palliative Care, Curtin University of Technology and Edith Cowan
University, Shenton Park, Western Australia, LJ Kristjanson Research and Development, Curtin University
of Technology, Bentley, Western Australia and MB Phillips Princess Margaret Hospital for Children, Perth,
Western Australia
Objective: To identify the perceptions of parents of children who died from cancer
regarding the palliative and supportive care they received in hospital and in community
settings. Method: Face-to-face or telephone questionnaires. Setting Tertiary paediatric
oncology centres in Western Australia, New South Wales, Queensland and Victoria.
Participants: 69 parents. Results: Parents indicated the need for clear and honest infor-
mation about their childs condition and prognosis throughout the trajectory of illness.
Parents also required access to, and advice from, multidisciplinary health professionals
when caring for their child at home. Parents preferred to care for their child at home
wherever possible throughout the palliative care trajectory of their childs cancer and
were well supported by immediate and extended family and friends. However, many
families were affected emotionally and financially by the burden of caring for their
child with incurable cancer. Families required financial and practical assistance with
providing care from their child. Parents wanted and needed more practical resources
and information to assist with the management of their childs nutrition and pain, as
well as for the support of their other children. Conclusion: Care for children and their
families should be coordinated by a multidisciplinary team in consultation with chil-
dren and their families, and should be linked and integrated with the treating hospital
in collaboration with community services. Palliative Medicine (2009); 23: 526536
Key words: cancer; children; families; palliative care; supportive care
The growth in the field of palliative medicine for adults
has not been replicated in paediatrics. Despite the increas-
ing awareness of the need for comprehensive care of dying
children and their families, palliative care remains rela-
tively underdeveloped in the paediatric setting. Hence,
there is a lack of sound evidence in the scientific literature
relating to paediatric palliative care, and while advances
in paediatric cancer treatment have led to dramatic
improvements in survival rates during the last 10
20 years, this has not been matched in the provision of
palliative care for all children with cancer.
Palliative care in the paediatric context differs from
that of adults in several significant aspects. These include
physiological factors, developmental issues, preference for
home care whenever possible throughout the cancer tra-
jectory (including the palliative phase), variation in the
state of readiness for transition to an exclusively palliative
approach and parental involvement in care giving and
decision making.
16
Paediatric-specific, palliative-care services have been
developing since the 1980s, yet there are continued calls
to improve the quality and delivery of paediatric palliative
care.
7,8
There are many reports of perceived barriers and
gaps in paediatric palliative care service provision,
911
and
while there is increasing awareness of the need for com-
prehensive care for dying children and their families,
6,12,13
there is a lack of evidence-based literature to guide paedi-
atric palliative and supportive care practice. The WHO
has affirmed key principles of paediatric palliative care
support provision. These include the incorporation of
multidisciplinary, flexible, and coordinated palliative
care for all children with cancer regardless of geographic
location.
6,14
These principles are recognised internation-
ally and now form the basis of many paediatric palliative
care policies and standards; however, variation between
individual countries exist mainly due to differences in
health system management, economic resources and
funding. A number of countries and organisations have
developed models and guidelines for paediatric palliative
care including the Association for Children with Life
Threatening or Terminal Conditions and their Families
(ACT) and the Royal College of Paediatrics and Child
Health in the United Kingdom, the European Association
for Palliative Cares IMPaCCT core standards for paedi-
Correspondence to: Leanne Monterosso, PhD, BNurs(Hons),
GCert Tertiary Teaching, Associate Professor, WA Centre for
Cancer and Palliative Care Research, Division of Health
Sciences, Curtin University, GPO Box U1987, Perth 6845,
Australia. Email: l.monterosso@curtin.edu.au
2009 SAGE Publications, Los Angeles, London, New Delhi and Singapore 10.1177/0269216309104060
Palliative Medicine 2009; 23: 526536
at UNIV FED DO RIO GRANDE DO SUL on December 1, 2012 pmj.sagepub.com Downloaded from
atric palliative care,
15
and the United States Congress
Childrens Program for All-Inclusive Co-ordinated Care
Act of 2008 (ChiPPAC) developed by Childrens Hospice
International.
16
The organisation of health care in Australia is unique;
tertiary hospitals are managed at a state level by a govern-
ment department of health and community services are
largely funded either by local private agencies or state
and/or federal government health departments. Paediatric
palliative care services are in a process of development
and refinement. Dedicated paediatric palliative care ser-
vices have been operating in Victoria, New South Wales
and South Australia for several years. There are also two
freestanding childrens hospices located in New South
Wales and Victoria. At the time of this study, there were
no formal paediatric palliative care services in Western
Australia or Queensland. Findings from this study
together with a similar study conducted with Western
Australian parents of children with malignant (n = 19)
and non-malignant life-threatening illnesses (n = 119)
4
have since informed the development of a recently imple-
mented a state-wide paediatric palliative care service in
Western Australia.
17
Although the Western Australian
was a distinct study, data from parents of children with
malignant conditions (n = 19) were shared with the study
reported here as the methodology used was identical.
Prior to study commencement, there was a lack of evi-
dence and policy to guide paediatric palliative care service
provision for the paediatric cancer population. This study
was undertaken to better understand the needs of Austra-
lian children and adolescents with cancer and of their fam-
ilies, and to provide evidence to guide the development of
new and existing paediatric palliative care services. The
overall aim of the study was to determine the palliative
and supportive care needs of families of children who
have died from cancer, how well these needs were met
and the perceived barriers to service provision.
A prospective, two-phase study was undertaken between
February 2003 and March 2005, using a combination of
quantitative and qualitative methodologies was used. This
article reports the findings from the first phase; a prospec-
tive five-site study. Findings from the second qualitative
phase of this study have recently been reported.
5
Methods
Design
The study used a retrospective, descriptive, exploratory
approach using quantitative methods.
Target population and sample
This study was undertaken in Western Australia (WA),
Queensland (QLD), and New South Wales (NSW). Par-
ents of all children and adolescents aged from 0 to
19 years who died from cancer 636 months prior to
study commencement in these states, and were treated in
a paediatric tertiary referral cancer centre were eligible for
inclusion. Potential participants were identified by a
member of the oncology team at each site. Each parent
was initially sent a letter of invitation (signed by the
head of department), a tick-box form and reply paid enve-
lope. If parents chose to participate, they were asked to
complete the tick-box form, indicating their willingness
to be sent an information sheet about the study and a con-
sent form. Parents who chose not to participate were
informed they would not be approached again in accor-
dance with ethic committee guidelines. Upon receipt of a
signed consent form, the research assistant contacted each
parent by telephone and arranged an appointment to con-
duct an interview either face-to-face or by telephone
according to preference.
Of the 207 parents eligible for inclusion in this study, 69
participated (Western Australia n = 19; New South Wales
n = 27; Queensland n = 23). Face-to-face interviews were
conducted with 33 parents (Western Australia: n = 17,
New South Wales: n = 16) and telephone interviews were
conducted with 41 parents.
Ethical considerations
Ethical approval to conduct this study was obtained from
Edith Cowan University in Western Australia, Womens
and Childrens Health Service of Western Australia, Con-
fidentiality of Health Information Committee of Western
Australia, Royal Childrens Hospital Brisbane, Mater
Childrens Hospital Brisbane, Childrens Hospital at
Westmead, the Sydney Childrens Hospital Randwick
and Royal Childrens Hospital Melbourne.
Study challenges and limitations
Initially, the intention of the researchers was to include all
Australian states in this study; however, other palliative
care studies were already in progress in two states and
approaching parents for participation in this study was
not considered due to the risk of research participation
overload. One state declined because of a perception the
study would place bereaved parents at risk for emotional
distress. Our experience from this study showed that
bereaved parents who participated were appreciative of
the opportunity to discuss their childs cancer illness,
death and their own subsequent bereavement. Further-
more, many parents were hopeful that expressing their
own personal experience and providing suggestions for
future care improvements would lead to more optimal
care for future children with cancer and their families.
Supportive and palliative care needs of Australian families of children with cancer 527
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Objectives
This study comprised face-to-face or telephone interviews
with parents to administer a series of questionnaires to
determine the following:

Demographic profile of parents and children, which

includes childrens medical diagnosis and treatments

Needs of parents and siblings

Parents education and support needs

Service and educational resources used by children and

parents in hospital and in community settings

Levels of anxiety and depression in parents.

Data collection
As described, interviews were conducted either face-to-
face or by telephone. Interviews lasted between 45 and
90 min during which time the following questionnaires
were administered:
1) A demographic questionnaire to ascertain the demo-
graphic profile of parents and the disease-related pro-
file of children.
2) The Service and Educational Resource Utilisation
(SERU)
18
questionnaire was used to determine access
and/or use of services and educational resources avail-
able from local hospitals, community service agencies
and/or regional health centres.
The SERU comprised the following seven sections that
included closed, Likert-type and open-ended questions:
A) Section 1: 47 questions about services provided
at the tertiary hospital, community services and
agencies, use and preference of respite, and use of
a childrens hospital or other treatment centres
B) Section 2: 10 questions relating to travel and use
of local health services at home
C) Section 3: 7 questions about the financial impact
of caring for a child with a life-threatening illness
D) Section 4: 15 questions about use of educational
and other resources
E) Section 5: 17 demographic questions about the
child and family (not included in the demographic
questionnaire described earlier)
F) Section 6: 14 items from the Hospital Anxiety
and Depression Scale (HADS), an instrument
designed to detect the presence and severity of
mild degrees of mood disorder, anxiety and
depression.19 The scoring system divided the total
scores into four categories: normal (scores 07),
mild (scores 810), moderate (scores 1114), and
severe (scores 1521). In addition, there were two
questions about whether the care giving role caused
isolation and communication difficulties with fam-
ily, friends and members of the general community
G) Section 7: 13 questions about specific carer needs
relatedtoservices andeducation. Specific carer needs,
related to services and education, were explored in
terms of importance, howwell theneeds weremet (ful-
filment) and whether further information was
required. The possible range rating scale items was
15 (1 = not at all, through to 5 = extremely).
3) The Patient Carers Needs Survey (PCNS) comprised
16 items and was derived from the Home Caregiver
Needs Survey.
20
For each item (representing an individ-
ual carer need), parents were asked to respond to three
Likert-type scales ranging from 1 to 5 (1 = not at all,
through to 5 = extremely). The scales measured parents
perceived importance of a need, how well the need had
beenmet, andif they would have likedmore information.
4) The Family Inventory of Needs Paediatric II (FIN-
PED II) was used to determine the needs of parents.
The FIN-PED II is a 17-item multi-dimensional
instrument with three subscales; the first measured
the importance of care needs, the second measured
the extent to which needs were met and the third mea-
sured the need for more information.
21,22
The possible
range for each rating scale items was 1 to 5 (1 = not at
all, through to 5 = extremely).
Data analysis
Demographic childhood illness and parent characteristics
were summarised using descriptive statistics. Categorical
variables such as age and gender were analysed using fre-
quencies and percentages. Continuous variables such as
time of diagnosis to death were calculated using means
and standard deviations. To determine relationships
between demographic variables and state of residence, the
KruskalWallis chi-square test was used for non-
parametric data and the chi-square test was used for cate-
gorical variables. Responses to the FIN-PED, PCNS,
SERU and HADS instruments were also analysed using
descriptive statistics. Where appropriate, responses to each
item for subscales were ranked according to overall group
means. Subscales were then ranked according to means.
Key findings
Child demographics
Approximately 35% of children were diagnosed with
brain and spinal tumours (Table 1).
A chi-square analysis showed no significant relationship
between type of cancer diagnosis and state (P = 0.582).
Almost all children underwent chemotherapy (n = 66;
96%), 75% (n = 51) of children had radiotherapy and 88%
(n = 59) had surgery. There was no significant relation-
ship between the type of treatment received and state
528 L Monterosso et al.
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of residence (chemotherapy P = 0.382, radiotherapy
P = 0.369, surgery P = 0.286). The highest number of
relapses or recurrences recorded in the same individual
was five, with an average of 1.2 (SD = 1.2). A Kruskal
Wallis test showed no significant difference between the
number of relapses and state of residence (P = 0.081).
The average age of children at diagnosis was 6.6 years
(SD = 4.7), the average age at death was 9.5 years
(SD = 5.0) and average treatment duration was 2.9 years
(SD = 3.1). The mean age of children at diagnosis was
6.6 years (median 5.2 years) and at death was 6.6 years
(median 9.3 years). The mean treatment duration was
2.9 years (median 2.0 years). KruskalWallis tests showed
no significant differences with respect to state and the age
of child at diagnosis (P = 0.766), age of child at death
(P = 0.672) or the treatment duration (P = 0.776). The
majority of children were admitted to hospital at least
16 times (62%). There was no relationship between the
number of hospital admissions and state of residence
(P = 0.382). Ninety six percent of children in the sample
had siblings (M = 1.5, SD = 1.4).
Parent demographics
Most parents interviewed were mothers (n = 49, 71%), mar-
ried (n = 55, 80%), aged over 41 (n = 52, 75%), had at least a
high school education (n = 55, 80%), lived in the metropoli-
tan area (n = 48, 70%), worked outside the home (n = 49,
71%) and were a full-time carer during the palliative care
phase of their childs illness (n = 41, 56%) (Table 2). Chi-
square analyses showed no significant differences between
marital status (P = 0.57), age (P = 0.30), education
(P = 0.21), place of residence (P = 0.15), place of work
(P = 0.33) or type of work (P = 0.32) and state of residence.
Both parents were interviewed in 35% (n = 24) of cases,
with fathers only comprising 9% (n = 6) of interviews.
About 52 (70%) mothers were interviewed. Chi-square
analysis showed a significant relationship between the
parent who was interviewed and state (P = 0.043). West-
ern Australia data demonstrated a higher proportion of
both parents interviewed (n = 12, 63%) compared with
New South Wales (n = 6, 22%) and Queensland (n = 6,
26%). About 90% (n = 62) of parents had access to a
Health Care Card, and 78% (54) were born in Australia.
There were no significant differences between relationship
to child (P = 0.663), age (P = 0.184), education
(P = 0.126), country of birth (P = 0.646), living arrange-
ments (P = 0.349) and Health Care Card holders
(P = 0.804) and state of residence.
Impact of childs condition on parents and family
The majority of parents rated their general heath as good
(n = 42, 58%). Fifty percent (n = 34) of parents suffered
from severe anxiety and 32% (n = 21) from moderate anx-
iety. Forty-two percent (n = 29) of parents suffered from
severe depression and 27% (n = 19) from moderate
depression (Table 3). There was no significant differences
between states for general health (P = 0.084), anxiety
(P = 0.316) and depression (P = 0.638) in parents.
Forty-one percent (n = 28) of parents reported a high
to very high overall financial impact from caring for their
sick children. The majority of financial costs related to
transport (n = 45, 65%), pharmacy items (n = 33, 48%)
and maintaining contact with extended family members
(n = 32, 46%). Differences in impact were not significantly
different between states.
Percentages listed in the following Table 4 are valid
percentages whose computations excluded some missing
values.
Services at the hospital
As described, the SERU questionnaire was used to deter-
mine participants perceptions of the level of use and
helpfulness of health professionals, services and
Table 1 Childrens cancer diagnosis by state (n = 69)
Diagnosis NSW n (%) QLD n (%) WA n (%) Total (N = 69) n (%)
Acute lymphoblastic leukaemia 3 (11.1) 2 (8.7) 2 (10.5) 7 (10.1)
Acute myeloid leukaemia 1 (3.7) 0 (0.0) 1 (5.3) 2 (2.9)
Non-Hodgkins lymphoma 0 (0.0) 2 (8.7) 0 (0.0) 2 (2.9)
Rhabdomyosarcoma 2 (7.4) 0 (0.0) 2 (10.5) 4 (5.8)
Undifferentiated sarcoma 1 (3.7) 0 (0.0) 2 (10.5) 3 (4.3)
Soft tissue sarcoma 2 (7.4) 0 (0.0) 0 (0.0) 2 (2.9)
Osteogenic sarcoma 0 (0.0) 2 (8.7) 0 (0.0) 2 (2.9)
Ewings sarcoma/PNET 2 (7.4) 0 (0.0) 0 (0.0) 2 (2.9)
Brain tumour medulloblastoma 4 (14.8) 1 (4.3) 3 (15.8) 8 (11.6)
Brain tumour astrocytoma 2 (7.4) 3 (13.0) 0 (0.0) 5 (7.2)
Brain tumour other 3 (11.1) 4 (17.4) 4 (21.1) 11 (15.9)
Neuroblastoma 4 (14.8) 3 (13.0) 4 (21.1) 11 (15.9)
Hepatoblastoma 1 (3.7) 0 (0.0) 0 (0.0) 1 (1.4)
Retinoblastoma 0 (0.0) 2 (8.7) 0 (0.0) 2 (2.9)
Other type of cancer 2 (7.4) 4 (17.4) 1 (5.3) 7 (10.1)
NSW, New South Wales; QLD, Queensland; WA, Western Australia; PNET, primitive neuroectodermal tumour.
Supportive and palliative care needs of Australian families of children with cancer 529
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educational resources available from local hospitals, com-
munity service agencies and regional health centres. Table
4 represents the proportion of parents who used specified
health professionals, services and educational resources at
the hospital, and the proportion of parents who perceived
these to be very helpful.
All parents used the services of an oncologist and most
parents used a social worker, oncology liaison nurse, die-
tician, physiotherapist and childrens activity coordinator
(play therapist). Overall, the services parents found most
helpful (in order of helpfulness) were the pain team
(n = 35, 89.7%), oncologist (n = 60, 87%), occupational
Table 2 Characteristics of 69 parents according to demographic data and care-related variables
NSW n (%) QLD n (%) WA n (%) Total (N = 69) n (%)
Relationship to child
Mother 20 (74.1) 18 (78.3) 11 (57.9) 52 (70.3)
Father 7 (25.9) 4 (17.4) 7 (36.8) 20 (27.0)
Other 0 (0.0) 1 (4.3) 1 (5.3) 2 (2.7)
Age (years)
2130 1 (3.7) 2 (8.7) 0 (0.0) 3 (4.1)
3140 10 (37.0) 4 (17.4) 10 (52.6) 26 (35.1)
4150 10 (37.0) 11 (47.8) 9 (47.4) 33 (44.6)
Over 50 6 (22.2) 6 (26.1) 0 (0.0) 12 (16.2)
Education
No qualifications 13 (48.1) 10 (43.5) 4 (21.1) 28 (37.8)
Trade/apprenticeship/job training 4 (14.8) 6 (26.1) 1 (5.3) 11 (14.9)
Certificate/diploma 4 (14.8) 4 (17.4) 5 (26.3) 16 (21.6)
Bachelor degree or higher 6 (22.2) 3 (13.0) 8 (42.1) 18 (24.3)
Other 0 (0.0) 0 (0.0) 1 (5.3) 1 (1.4)
Country of birth
Australia 21 (77.8) 17 (73.9) 15 (78.9) 58 (78.4)
Other 6 (22.2) 6 (26.1) 4 (21.1) 16 (21.6)
Living arrangements during palliative care
Single parent 0 (0.0) 2 (8.7) 3 (15.8) 5 (6.8)
Two parents 26 (96.3) 20 (87.0) 14 (73.7) 65 (87.8)
Other 1 (3.7) 1 (4.3) 2 (10.5) 4 (5.4)
Employment during palliative care
Full-time home carer 15 (57.7) 19 (82.6) 6 (31.6) 41 (56.2)
Paid leave 0 (0.0) 0 (0.0) 2 (10.5) 3 (4.1)
Unpaid leave 0 (0.0) 1 (4.3) 0 (0.0) 1 (1.4)
Full-time employment 4 (15.4) 2 (8.7) 5 (26.3) 12 (16.4)
Part-time employment 5 (19.2) 0 (0.0) 3 (15.8) 9 (12.3)
Casual employment 0 (0.0) 0 (0.0) 0 (0.0) 0 (0.0)
Self employed 1 (3.8) 1 (4.3) 2 (10.5) 4 (5.5)
Retired 0 (0.0) 0 (0.0) 0 (0.0) 0 (0.0)
Other 1 (3.8) 0 (0.0) 2 (10.5) 4 (5.5)
Government funded financial support
Health care card (child) 25 (92.6) 20 (87.0) 17 (89.5) 62 (89.9)
Disability support pension (carer) 8 (29.6) 4 (17.4) 2 (10.5) 14 (20.3)
Youth allowance (carer) 0 (0.0) 0 (0.0) 1 (5.9) 1 (1.5)
Childs disability/carers allowance 8 (29.6) 8 (34.8) 12 (66.7) 28 (41.2)
Carers pension 0 (0.0) 1 (4.3) 3 (17.6) 4 (6.0)
NSW, New South Wales; QLD, Queensland; WA, Western Australia.
Table 3 Anxiety and depression in 69 parents by state according to HADS scale
NSW n (%) QLD n (%) WA n (%) Total (N = 69) n (%)
Anxiety
Normal 5 (7.4) 6 (8.7) 11 (15.8) 7 (9.5)
Mild 8 (11.1) 6 (8.7) 4 (5.3) 6 (8.1)
Moderate 15 (22.2) 30 (43.5) 14 (21.1) 22 (32.4)
Severe 41 (59.3) 27 (39.1) 40 (57.9) 35 (50.0)
Depression
Normal 8 (11.1) 3 (4.3) 11 (15.8) 7 (9.5)
Mild 15 (22.2) 18 (26.1) 11 (15.8) 15 (21.6)
Moderate 20 (29.6) 24 (34.8) 14 (21.1) 19 (27.0)
Severe 26 (37.0) 24 (34.8) 33 (47.4) 29 (41.9)
NSW, New South Wales; QLD, Queensland; WA, Western Australia.
530 L Monterosso et al.
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therapist (n = 33, 89.7%), social worker (n = 48, 75%) and
childrens activity coordinator (n = 38, 77.5%). In QLD,
the oncologist (n = 18, 100%), physiotherapist (n = 14,
87.5%) and pain team (n = 7, 85.7%) were considered
most helpful. In WA, the occupational therapist (n = 13,
86.7%), childrens activity coordinator (n = 14, 82.5%)
and social worker (n = 13, 76.5%) were found to be most
helpful. Finally, in NSW, the pain team (n = 20, 100.0%),
oncologist (n = 26, 96.9%) and childrens activity coordi-
nator (n = 18, 77.8%) services were most helpful.
Specialist oncology doctors ranked highly in terms of
access, use and helpfulness but were ranked low in terms of
ease of access. The childrens activitycoordinator was highly
ranked in terms of ease of access and helpfulness but lower
ranked in terms of access and use. Occupation therapists
were ranked the highest in terms of helpfulness, but were
ranked low in terms of access, ease of access and use.
Hospital-based resources
The resources most frequently used and most helpful were
as follows: general information from nurses on the ward
(n = 59, 92.2%), education by staff on how to care for a
child at home (n = 46, 82.1%) and information from oncol-
ogy liaison nurses (n = 51, 81.0%). There were no differences
for these variables according to parents state of residence.
Community services
Community services were rated in terms of access, ease of
access, use and helpfulness (Table 5). Services were avail-
able in all states although not all participants had access.
The numbers reported in Table 6 are, therefore, low but
are worthy of consideration. Local general practitioners
ranked highly in terms of access, ease of access, use and
helpfulness. Community oncology nurses and local pae-
diatricians were ranked high in terms of helpfulness, ease
of use. Local public hospitals were ranked low for access,
ease of access and use but ranked highly in terms of
helpfulness. Community support services including the
local church rated highly for ease of use and helpfulness.
The local private hospital with a paediatric facility was
highly ranked in terms of ease of access but ranked low
in terms of access, use and helpfulness. Findings were sim-
ilar across states.
Respite and support
Eighty-seven percent (n = 62) of parents relied on respite
and support from their immediate family; 72% (n = 50)
was provided by partners and 17% (n = 12) by siblings.
Many families (n = 55, 82%) also relied on support from
their extended family; mainly from a close relative 64%
(n = 44). Twenty-three percent (n = 16) of parents stated
that such respite assisted with maintenance of the daily
home routine. T
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Supportive and palliative care needs of Australian families of children with cancer 531
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Fifty-four (78%) participants chose not to use respite
services. When asked to retrospectively consider what
type of respite they would have benefited from during
the palliative phase, 39% (n = 21) would have chosen in-
home respite but only at a time when they felt exhausted.
Eight (12%) parents/carers used government funded or
private in-home respite. Six (9%) of participants used gov-
ernment funded or private out-of home respite where the
waiting period ranged from 3 to 5 weeks. Respite centres
were located between 0 and 5 km from home; three cared
for children only and three centres catered for both chil-
dren and adults.
Carer needs
The PCNS questionnaire was used to determine partici-
pants perceptions of their needs related to caring for
their dying child at home (Table 6). These were rated
according to the most important carer needs, how well
these needs were met and the need for more information
during the palliative care phase of their childs cancer ill-
ness. Carer needs rated as most important were as follows:
to know about ways to help keep their child comfortable,
to assist in methods of pain control for their child, to have
equipment to help with their childs care, to have home
visits by health professionals as needed and to know
ways to maintain a normal lifestyle with my child. Of
these, the following were not well met and more informa-
tion had been required: to know about ways to help keep
their child comfortable, to assist with methods of pain
control and to know ways to maintain a normal lifestyle
with their child.
Service and educational needs
The most important carer needs were as follows: to have
access to health care professionals advice outside of reg-
ular hours, to know more about the role of other medi-
cines for their child, to have access to more specific
sources of information including palliative care, to have
help in administering medications to their child and to
know the types of financial assistance that were available.
Of these, the following were not well met and there was a
perceived need for more information: to have access
to health care professionals advice outside of regular
hours, to have access to more specific sources of informa-
tion including palliative care and to know the types of
financial assistance that were available (Table 7).
Family needs
As described earlier the FIN-PED II was used to deter-
mine the family needs. The family needs considered most
important were as follows: to know questions could be
asked at any time, to feel that the health care professionals
were sincere in caring about their child, to know what
treatment their child was receiving, to know when to
Table 5 Level of access, use, ease of use, and helpfulness of health professionals and services in the community
according to the Service and Educational Resource Utilisation scale (N = 69)
Service Access available Used Very or extremely easy to use Very or extremely helpful
Community cancer nurse 28 (43.1) 27 (39.1) 25 (92.6) 23 (100.0)
Local paediatrician 16 (26.7) 16 (26.7) 12 (75.0) 10 (83.3)
Local public hospital
(paediatric facilities)
24 (39.3) 19 (32.2) 17 (26.1) 16 (80.0)
General practitioner 51 (79.7) 50 (72.5) 42 (84.0) 30 (73.2)
Other services (e.g. church) 38 (60.3) 35 (58.3) 31 (81.6) 25 (71.3)
Complementary medicine
practitioners
25 (45.4) 17 (31.5) 15 (65.2) 6 (37.5)
Local public hospital 28 (44.4) 16 (25.8) 19 (76.0) 12 (70.6)
Local private hospital 9 (14.3) 3 (5.0) 7 (77.8) 1 (33.3)
Table 6 Five most important patient carer needs rated as important or very important according to the Patient Carer
Needs Survey (N = 69)
Carer need Important/very important n (%) Partly/not met n (%) Needed more information n (%)
To know about ways to help keep child
comfortable
59 (86.8) 16 (23.5) 19 (28.4)
Assistance with methods of pain
control
58 (85.3) 13 (19.4) 15 (22.4)
To have equipment to help manage
childs care
51 (75.0) 2 (3.0) 7 (10.4)
To have home visits by health
professionals when needed
48 (73.9) 9 (13.8) 11 (17.1)
To know ways to maintain a normal
lifestyle with child
46 (69.7) 19 (29.7) 12 (19.4)
532 L Monterosso et al.
at UNIV FED DO RIO GRANDE DO SUL on December 1, 2012 pmj.sagepub.com Downloaded from
expect side effects to occur and to have trust in the health
care system. The following needs were not well met and
more information had been required: to feel that the
health care professionals were sincere in caring about
their child, to know when to expect side effects to occur
and to have trust in the health care system (Table 8).
Discussion
Liben and colleagues
5
recently questioned the relevance
of core principles of adult palliative care for children and
families from cultural origins other than the United
Kingdom and the United States. These principles
included open disclosure and honesty; patients autonomy
through the active participation of the family in decision
making; and open expression of feelings, concerns and
needs to facilitate quality of life and successful navigation
through end-of-life issues including unfinished business,
good death and bereavement care. Key findings from
our study confirmed the relevance of these principles of
adult palliative care to Australian children who die from
cancer and to their families.
Identified parents needs from the health care system
Our study showed the high importance placed by parents
on the need to trust in the health care system, to feel that
health care professionals were sincere in caring about their
child, to know they could ask questions any time, to have
access to health care professionals advice out of regular
hours, to be informed of the childs treatment and possible
side effects and to have more information about palliative
care. Findings were consistent across the three states.
These findings were explored in more depth using qualita-
tive interviews in Phase 2 and were recently reported.
5
Parents consistently referred to the importance of the
quality of interpersonal relationships between them and
health care professionals, and between their children and
health care professionals. Further, parents clearly articu-
lated the need for honest, open, authentic, and therapeutic
relationships as an imperative to facilitate quality care of
the dying child to ensure a good death.
Parental anxiety and depression
Several other important findings emerged from our study.
Although, parents reported their general health as good,
many suffered from moderate to severe anxiety. These
findings corroborate results from a recent study by the
researchers where parents of children with non-
malignant (n = 119) life-threatening conditions in West-
ern Australia also reported their general health as good,
and their levels of anxiety and depression as moderate to
severe.
4
Although symptoms of depression have been
shown to ameliorate over time from diagnosis, the death
of a child has a profound effect on symptoms in
parents.
23,24
Death of a child from cancer has been
reported as potentially more stressful than other chronic
diseases.
25
This important finding warrants consideration
Table 7 Five most important service and educational needs of family rated as important or very important according
to the Service and Educational Resources Utilisation scale (N = 69)
Service and educational need Important/very important n (%) Partly/not met n (%) Needed more information n (%)
To have access to health care
professionals advice out of regular
hours
58 (85.3) 18 (26.5) 17 (25.0)
To know more about the role of all
medications for child
45 (66.2) 8 (11.8) 11 (16.4)
To have access to more specific
sources of information, including
palliative care
44 (64.7) 20 (29.9) 20 (29.9)
Help in administering medications 39 (57.4) 8 (12.3) 6 (9.4)
To know what financial assistance was
available
30 (45.4) 16 (24.6) 11 (17.2)
Table 8 Five most important needs of family rated as important or very important according to the Family Inventory
of Needs-Paediatric (N = 69)
Family need Important/very important
n (%)
Partly/not met
n (%)
Needed more information
n (%)
To know questions could be asked any time 67 (97.1) 8 (11.6) 13 (19.1)
To feel health care professionals were sincere 66 (97.0) 10 (14.7) 11 (16.2)
To know what treatment child was receiving 65 (97.0) 7 (10.5) 14 (20.1)
To know when to expect side effects 66 (95.6) 18 (26.1) 20 (29.0)
To have trust in the healthcare system 66 (95.6) 15 (21.7) 17 (25.0)
Supportive and palliative care needs of Australian families of children with cancer 533
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in the care of parents of children with cancer, as recent
work has shown that these parents are at risk for mental
health problems including anxiety and depression.
24,2631
Needs related to caring for a child at home
In our study, parents caring for children during the pallia-
tive care trajectory of the cancer illness required out-
of-hours access advice from health professionals in order
to manage the complex level of care required by their
dying child. This finding was explored further in Phase
II of this study, which showed that parents wish to care
for and spend as much time as possible with their child at
home, whenever possible. Previous work has also shown
parents who care for a dying child at home are more likely
to cope with bereavement
32,33
and that home visits by
health professionals were valued highly and shown to
facilitate this process.
4
Parents had a number of practical
needs related to the provision of home care for their child
and these centred on providing adequate nutrition, pain
relief and keeping their child comfortable. These findings
concur with previous research that showed the preferred
place of care for children with cancer and other life-
threatening illnesses is in the home whenever possible.
34
Findings from Phase 2 confirmed these practical needs
as critical to providing appropriate supportive care.
4
Sibling-related needs
Another important finding was that parents required edu-
cation and practical assistance about how to care for their
sick childs healthy siblings and how to inform siblings
about the cancer diagnosis and illness trajectory. Our find-
ings support the needs of siblings that have previously been
well described from both the perspective of parents and
siblings.
3539
Previously reported needs include support
and information to help them make sense of his/her sib-
lings cancer illness, opportunities to express their own feel-
ings, reassurance to avoid fear or guilt, the need to feel val-
ued and maintain self esteem and to help maintain their
own interests and activities.
36,40
Of note, it has also been
shown that parents perceptions of their healthy childrens
needs differ from those of the healthy children
themselves.
39
Our findings suggest that more attention is
required fromhealth professionals in providing educational
and practical support to parents in this important area.
Respite need
Unlike families of children with non-malignant, life-
threatening illnesses where government or privately
funded respite has been reported as the cornerstone of
care,
4
families in our study were well supported in terms
of respite, and support needs by immediate and extended
family and friends. The reliance by parents of children
with longer term non-malignant, life-threatening illness
on respite can possibly be explained by the care burden
caused by long-term survival of these children. In this sit-
uation, respite can assist in alleviating individual carer
stress, as well as the increasing desire of parents to care
for their sick children at home.
27,29,41
Differences related to state of residence and
service characteristics
Findings related to service delivery showed some disparity
across the states of Western Australia, New South Wales
and Queensland, regarding the availability and access to a
number of hospital and community services including
respite. Families in New South Wales were more likely
to use out-of-home respite centres. This could be
explained by the existence of a dedicated childrens hos-
pice, where service delivery is linked to a tertiary paediat-
ric oncology service. In Western Australia, families who
used respite services experienced higher waiting periods.
The probable cause could be explained by findings from
our previous work, which showed a lack of available
respite services in this state.
4
Transport costs were
reported as having the highest financial impact on families
in Queensland and Western Australia. This finding was
expected due to the large size of these states where parents
are confronted by travelling vast distances between the
tertiary paediatric facilities and rural locations of families.
Parents in New South Wales had more needs met than
parents in the other two states. This may be explained by
the presence of paediatric palliative care services in the
two tertiary paediatric oncology settings. At the time of
this study, there were no formal paediatric palliative care
services in Western Australia or Queensland.
Differences in service characteristics can be explained by
the organisation of health care in Australia. Tertiary hospi-
tals are managed at a state level by the state governments
health department, and community services are largely
funded either by local private agencies or state and/or fed-
eral government health departments. In a previous study of
the needs of families of children with life-threatening ill-
nesses (including cancer) conducted by the researchers,
there were similar findings and parents stated their prefer-
ence for a case management approach to supportive and
palliative care.
4
Recent Australian research has revealed
similar findings.
11
This model of care is currently being
used in three Australian states, where care is coordinated
by a manager in consultation with a multidisciplinary team
and linked with the tertiary hospitals and community agen-
cies. We recommend this case management approach to be
adopted throughout Australia.
4244
Relevance to practice
Together with our previous research evidence,
4,5
the
Health Department of Western Australia has adopted
534 L Monterosso et al.
at UNIV FED DO RIO GRANDE DO SUL on December 1, 2012 pmj.sagepub.com Downloaded from
our key findings in their guidelines for a state-wide paedi-
atric palliative care service.
45
The first paediatric pallia-
tive care service
17
was launched in June 2008 and
embraces five (see 15 below) of the six key service sup-
ports we identified as core components of an integrated
therapeutic palliative and supportive care service:
1) Undergraduate, postgraduate and clinical education
programs for health professionals regarding concepts
of paediatric supportive and palliative care, communi-
cation and practical needs of families.
2) Education of parents about supportive and palliative
care, and integration of relevant aspects of this care in
a childs treatment plan from diagnosis.
3) Practical preparation of parents for the provision of
home-based care, with home visits and out-of-hours
access to advice from health professionals.
4) Individualised and responsive care plans developed in
accordance with the needs of the sick child, parents
and healthy siblings.
5) Coordination of care by a full multidisciplinary team.
6) Ready and equitable access to in-home respite support.
A project is currently underway to scope the needs for in-
home respite by Western Australian families, and develop
a ready and equitable respite service that will form an inte-
gral part of the paediatric palliative care service.
Conclusions
Empirical findings from this multi-site study conducted
across three states of Australia provide specific guidelines
for the broad delivery of both palliative and supportive
care for this population of children suffering from incur-
able cancer. Appropriate infrastructure support is
required to facilitate the provision of quality and effective
palliative and supportive care. Emphasis should be on the
implementation of evidence-based clinical guidelines for
the care of these children and their families, and infra-
structure support for the provision of quality and effective
palliative and supportive care through partnerships
between those children who are dying, their families and
health professionals.
Acknowledgements
Funding: National Medical and Health Research Council
of Australia, WA Childrens Hospice Association (Inc),
Australian Government Department of Health and Age-
ing, Edith Cowan University, and the Western Australian
Government Department of Health through the Women
and Childrens Health Service of Western Australia.
We thank the parents and health professionals who
assisted with this study for their support. We also express
gratitude to the following colleagues who contributed to
the NHMRC funding application: Professor Patsy Yates,
Professor Susan Sawyer, Dr Jenny Hynson, Dr Marianne
Phillips, Dr Elizabeth ORiordan, Dr Angela Alessandri
and Professor Kate White. We gratefully acknowledge the
following colleagues who assisted with recruitment of
participants: Dr Marianne Phillips, Dr Jenny Hynson,
Dr Helen Irving, Dr Michael Stephens, Ms Linda
Ewing, Dr Belinda Goodenough, Ms Donna Drew, Dr
Helen Irving, Dr Michael Stevens, Dr Belinda Goode-
nough and Ms Donna Drew.
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