Community Palliative Care Nurses’ Challenges and Coping Strategies on Delivering Home-Based Pediatric Palliative Care: A Qualitative Study

Medical Manuscript
Community Palliative Care Nurses’
Challenges and Coping Strategies on
Delivering Home-Based Pediatric Palliative
Care: A Qualitative Study
LeeAi Chong, M(Paeds) 1
, and Adina Abdullah, M(Med)(Fam Med) 2
Abstract
Objective: The aim of this study was to explore the experience of community palliative care nurses providing home care to
children. Method: A qualitative study was conducted at the 3 community palliative care provider organizations in greater
Kuala Lumpur from August to October 2014. Data were collected with semistructured interviews with 16 nurses who have
provided care to children and was analyzed using thematic analysis. Two categories were identified: (1) challenges nurses
faced and (2) coping strategies. The themes identified from the categories are (1) communication challenges, (2) inadequate
training and knowledge, (3) personal suffering, (4) challenges of the system, (5) intrapersonal coping skills, (6) interpersonal
coping strategies, and (7) systemic supports. Conclusions: These results reinforces the need for integration of pediatric
palliative care teaching and communication skills training into all undergraduate health care programs. Provider organizational
support to meet the specific needs of the nurses in the community can help retain them in their role. It will also be important
to develop standards for current and new palliative care services to ensure delivery of quality pediatric palliative care.
Keywords
palliative care, pediatric, home based care, nurse, qualitative study, Malaysia
Introduction
Pediatric palliative care aims to improve quality of life and
reduce suffering of children and their families in the physical,
psychological, social, and spiritual domains.1-3 World Health
Organization recommends that palliative care for children with
life-limiting conditions should start from diagnosis and be avail-
able to patients and their families at hospitals and at their homes
too.2 Home-based palliative care has been shown to improve
patient’s quality of life and provide psychological and emotional
benefits to carers.4,5 Families who are able to care for a child at
end of life at home also do better in bereavement.1,6-8
Children are not just young adults; while the principles of
palliative care are similar, there are many issues that differenti-
ate care for them.5,9,10 The life-limiting illnesses that children
have are often nonmalignant and uncommon in adults, and
prognosis is often less certain. 11 Studies have reported long-
term profound negative impact on parents from the loss of a
child, and bereaved parents are at a higher risk for complicated
grief compared to bereaved spouses or bereaved adult chil-
dren. 12-14 Culture and religion can have an influence on pallia-
tive care for children. 15
Pediatric palliative care is a young emerging subspecialty in
Malaysia. There are minimal services for children with life-
limiting illness in the community, and there is currently no
formally trained pediatric palliative care nurse in Malaysia.
Pediatricians provide palliative care of variable levels in hos-
pitals and rely on individual nongovernmental organizations
(NGOs) to provide home-based palliative care. The services
of these NGOs are mainly for adults with cancer. 16 However
with increased pediatric referrals, these NGOs are providing
care for children out of necessity.
Caring for dying children can be challenging and in the
community, nurses should be supported and have their needs
addressed to ensure a sustained gratifying career. 1,17 Previously
identified challenges faced by community nurses were the lack
of knowledge and skills, emotional preparedness, maintaining
professional boundaries with families, staff support, and finan-
cial and staff resources for a 24-hour service.10,18-20 These
1 Hospis Malaysia, Kuala Lumpur, Malaysia
2 University Malaya Primary Care Research Group, Department of Primary
Care Medicine, Faculty of Medicine, University Malaya, Kuala Lumpur,
Malaysia
Corresponding Author:
LeeAi Chong, M(Paeds), Hospis Malaysia, 2 Jalan 4/96 off, Jalan Sekuci, Kuala
Lumpur, 56100 Malaysia.
Email: [e-mail]
American Journal of Hospice
& Palliative Medicine®
1-7
ª The Author(s) 2015
Reprints and permission:
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DOI: 10.1177/1049909115607296
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reports from a western population lack the ethnic diversity that
we have in Malaysia.
The aim of this study is to explore the experiences of
community palliative care nurses providing home care for
children with life-limiting illnesses. Understanding the issues
that arise will help develop strategies to improve training
curricular of health care professionals and develop standards
of practice for services to ensure quality care is provide to
patients and families.
Method
This qualitative study used semistructured in-depth interviews
and was conducted in greater Kuala Lumpur, Malaysia, from
August 2014 to October 2014. In greater Kuala Lumpur, there
are 3 palliative care provider organizations and they each have
at least 1 doctor and a team of nurses leading the clinical ser-
vice. The experience of the palliative care doctors in caring
for children varied. Each nurse is allocated a geographical area
and would care for referred adult and pediatric patients living
in that area. These patients reflect the ethnic and religious
backgrounds of the population of Malaysia. Pediatric referrals
to each of these services vary from about 5 to 50 per year.
(Dr. Vanitha Thangaratnam and Dr. Felicia Chang, August
2015, personal communication with the Medical Directors).
Ethics approval was obtained from Hospis Malaysia Ethics
Committee. Hospis Malaysia is the largest of the 3 organiza-
tions, and majority (70%) of the participating nurses work
there. Approval from the medical directors of the other 2 orga-
nizations was obtained prior to involving the nurses. All 17
nurses from these organizations were given an information
sheet regarding the study and opportunities to ask questions
prior to the interview. They then gave their consent voluntarily.
Withdrawal from the study during or after the interview was
offered but none did.
All interviews were carried out by the principal investiga-
tor in English at the nurses’ work place and each interview
lasted between 20 and 50 minutes. An interview question
guide was developed based on literature review and local
expert opinions, and as Malaysia is a country of diverse race
and religion, nurses’ experience in this aspect was also
explored. (Table 1). The interview questions were grouped
and not all questions within a group needed to be asked. The
investigator listened to the words and ideas from the nurses to
explore their experience, challenges, needs, and coping strate-
gies. All nurses were forthcoming and happy to share their
experiences during the interview. Field notes were taken by
the interviewer and used to guide analysis. Interviews were
audio recorded and transcribed verbatim.
Analysis was carried out in parallel to the interviews. Tran-
scripts were loaded into NVivo Version 10 to enable coding.
Coding involved the examination of each line of the transcript
to establish the meaning. Both investigators coded one tran-
script independently and compared codes that resulted. After
discussions, an agreement was made to drop, merge, and mod-
ify codes to develop a coding framework. Both investigators
then coded 25% of all transcripts independently and refined the
coding framework in agreement. The final coding framework
was used to then code all the rest of the transcripts. These codes
were then discussed, and subthemes and themes were generated
together in agreement. The themes were reviewed and refined
until the final identification of 4 themes for the challenges and
3 themes for the coping strategies (Table 2). Illustrative quotes
were then extracted and reported.
Results
Participants
Sixteen nurses were included in the study. One nurse had not
seen any pediatric patients and was excluded. All 16 nurses
were females. Median age of nurses was 29.5 years (range
24-62). Median years of experience as a nurse was 5 years
(range 1-25). Median years as a palliative care nurse was 2.5
Table 1. Interview Guide for the Semistructured Interview.
Ice breaker questions
Can you tell me how long you have worked with . . . (organization)?
Do you have a memorable patient? Can you tell me about her/him?
Experiences and challenges
What are the challenges/difficulties you face when seeing children in
palliative care?
How does it compare with seeing adults?
Are there any similarities in seeing adults and children?
What are the positive aspects of caring for a child in palliative care?
How has your communication style change when dealing with
children?
Can you tell me about your relationship with the patient’s parents
or carers?
Can you tell me how do you support parents?
Have you had any situations when culture differences affected the
care you provided?
Do you find the difference races react differently in illness?
What is rewarding about your job when you see children?
Coping
How do you cope after a challenging home visit?
How do your colleagues/organization help you cope in your job?
Improving delivery of care
How can you improve your ability to better care for children?
What are important skills in caring for children with palliative care
needs?
What training do you think is needed for care of children?
Can you share how you maintain professional boundary with a
patient/family?
From your experience, what advice will you give other nurses
providing care for children?
Bereavement care
How does the death of your patient affect you?
Have you been present at a child’s death?
What is most challenging about a bereavement visit?
How do you prepare for a bereavement visit?
What are the issues that arise at a bereavement visit that have been
difficult for you?
What do you do at a bereavement visit that you find rewarding?
2 American Journal of Hospice & Palliative Medicine®
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years (range 1-18). None of the nurses had training in pediatric
palliative care and only 1 had prior pediatric experience.
Demographics of the nurses are presented in Table 3.
Challenges in Communication
Communication with children. Rapport was deemed highly essen-
tial prior to any communication with children and it took more
time to establish compared to adult patients. The nature of the
child’s previous encounters with health care professionals at
hospitals seems to influence their acceptance of initial home vis-
its from nurses. To build rapport, nurses had to be innovative,
consciously having a gentler and brighter demeanor, showing
keen inquiring interest in the child’s activities, not directly
addressing their illness at the start of the visit, and facilitating
in fulfillment of their wishes and birthday celebrations.
Many nurses felt communication with children required a
different skills set and was different from conversations with
adult patients. Communicating with children required more
thought and words had to be simple. Explorative conversations
of inner feelings and emotion were limited. Nurses would use
drawing, art, or play to communicate and it was developmental
age rather than chronological age of the child that influence
their choice of method of communication. Conversations with
adolescents were challenging, as their thought processes and
actions seem less logical than adults and they were found to
be more emotional. All nurses acknowledged their inadequate
communication skills.
The way they communicate is not like adults, (adults) can mention
to us what is their problem, what is their difficulties . . . but not
with children . . . I mean their level of understanding, it’s not easy
to explore from children . . . so (we) try other ways to speak to
them . . . like art therapy—Nurse 12
When you talk to children, you appear a bit like . . . ‘gentler’ . . .
your tone become nice for children to hear. The words that you use
are very simple, not too many and . . . sometimes we use what chil-
dren like. For example, (if) they like cartoon so we talk about that
more or (if) they like . . . drawing, we (draw) together . . . during the
drawing they also talk, so we can listen and share . . . —Nurse 11
I sometimes feel adolescents, their emotion is a bit different from
the younger child or adults. They . . . like . . . turn more to emo-
tional, more anger. Sometimes they are more angry, how do we
deal with that? . . . How do I communicate with them?—Nurse 9
I feel frustrated when they don’t . . . they cannot think like what we
think, as an adult. We think that this is good, but even though they suf-
fer, they don’t want to comply with the treatment regime . . . that make
me feel very frustrated, sometimes feel like giving up.—Nurse 7
Communication with parents or caregivers. Establishing trust with
parents required time; hence it was challenging for nurses to
build rapport with parents when referrals are made only at the
end of life and when they have had a long relationship with
their primary team. Nurses encountered heightened emotions
in parents of their patients, there was anxiety, regret, fear of
loss, and anticipatory grief. Decision making often involved
the adults in the family and to advocate for their patient, and
nurses had to communicate with the parents and very often
the extended family as well. Nurses felt engaging children
on issues on death and dying, and spirituality was challen-
ging, as discussions with children were dependent on what
parents would allow. Understanding what patients want may
also be difficult when parents colluded and were not truthful
to their child.
Table 2. Categories, Themes, and Subthemes From the Analysis.
Categories Themes Subthemes
Challenges Communication Communication with children, communication with parents/care givers
Training and knowledge Unfamiliar diagnoses, assessment skills, doses of medication, communication skills
Personal suffering Emotive experience, fear and guilt from inexperience, busy workload, moral distress
Systemic Lack of other disciplines in team, inadequate services in the community, insufficient staff and insufficient
time for home visits
Coping Intrapersonal Meaningful role, resilience, motivation, coping skills
Interpersonal Team, colleagues, family, patient’s family
Systemic Informal and formal debriefing, 24 hour service for patients
Table 3. Demographics of the Nurses.
Nurse Age, years Palliative care experience, years
1 25 1
2 24 1
3 26 1
4 42 11
5 35 3
7 40 1.2
8 31 1
9 35 8
10 26 5
11 36 11
12 28 1.8
13 26 3.5
14 31 3
15 28 3
16 62 18
17 24 1
Chong and Abdullah 3
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