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

This study explores the experience of community palliative care nurses providing home care to children. The study identifies the challenges faced by the nurses and the coping strategies used by them. The study reinforces the need for integration of pediatric palliative care teaching and communication skills training into all undergraduate health care programs.

MedicalManuscript
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 ofthis study was to explore the experience of community palliative care nurses providing hom
children.Method: A qualitative study was conducted at the 3 community palliative care provider organizations in
Kuala Lumpur from August to October 2014.Data were collected with semistructured interviews with 16 nurses who h
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) personalsuffering,(4) challenges ofthe system,(5) intrapersonalcoping skills,(6) interpersonal
coping strategies,and (7)systemic supports.Conclusions:These results reinforces the need for integration ofpediatric
palliative care teaching and communication skills training into allundergraduate 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 willalso be important
to develop standards for current and new palliative care services to ensure delivery of quality pediatric palliativ
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.4,5Families 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 nonmalignantand 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
griefcompared to bereaved spouses orbereaved adultchil-
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 minimalservices 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 ho
pitals and rely on individualnongovernmentalorganizations
(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 fordying children can be challenging and in the
community,nurses should be supported and have their need
addressed to ensure a sustained gratifying career.1,17
Previously
identified challenges faced by community nurses were the
of knowledge and skills, emotional preparedness, maintain
professional boundaries with families, staff support, and fin
cial and staffresources fora 24-hourservice.10,18-20
These
1Hospis Malaysia,Kuala Lumpur,Malaysia
2University Malaya Primary Care Research Group,Departmentof Primary
Care Medicine,Facultyof Medicine,UniversityMalaya,KualaLumpur,
Malaysia
Corresponding Author:
LeeAiChong,M(Paeds),Hospis Malaysia,2 Jalan 4/96 off,Jalan Sekuci,Kuala
Lumpur,56100 Malaysia.
Email:[e-mail]
American Journalof Hospice
& Palliative Medicine®
1-7
ª The Author(s) 2015
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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
thatarise 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 thatarea.These patients reflectthe ethnic and religious
backgrounds of the population of Malaysia. Pediatric referrals
to each of these services vary from about5 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
sheetregarding 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 atthe 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’experiencein this aspectwas 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 refine
coding framework in agreement.The final coding framework
was used to then code all the rest of the transcripts. These
were then discussed, and subthemes and themes were gen
together in agreement. The themes were reviewed and refi
until the final identification of 4 themes for the challenges
3 themes for the coping strategies (Table 2). Illustrative qu
were then extracted and reported.
Results
Participants
Sixteen nurses were included in the study. One nurse had
seen any pediatric patients and was excluded.All 16 nurses
were females.Median age ofnurses 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/
Experiences and challenges
What are the challenges/difficulties you face when seeing child
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
How has your communication style change when dealing with
children?
Can you tellme about your relationship with the patient’s parent
or carers?
Can you tellme how do you support parents?
Have you had any situations when culture differences affected
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 c
needs?
What training do you think is needed for care of children?
Can you share how you maintain professionalboundary with a
patient/family?
From your experience,what advice willyou 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
difficult for you?
What do you do at a bereavement visit that you find rewarding
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years (range 1-18). None of the nurses had training in pediatric
palliative care and only 1 had priorpediatric 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 interestin the child’sactivities,not directly
addressing their illness at the start of the visit,and facilitating
in fulfillment of their wishes and birthday celebrations.
Many nurses feltcommunication with children required a
different skills set and was different from conversations with
adultpatients.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 chronologicalage of the child thatinfluence
their choice of method of communication. Conversations with
adolescents were challenging,as their thoughtprocesses and
actions seem less logicalthan adults and they were found to
be more emotional. All nurses acknowledged their inadequ
communication skills.
The way they communicate is not like adults, (adults) can men
to us what is their problem,what is their difficulties. . .but not
with children . . .I mean their level of understanding, it’s not eas
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 yo
are very simple, not too many and . . .sometimes we use what chil-
dren like. For example, (if) they like cartoon so we talk about t
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 fr
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
fer, they don’t want to comply with the treatment regime . . .
me feel very frustrated, sometimes feel like giving up.—Nurse
Communication with parents or caregivers. Establishing tru
parents required time; hence it was challenging for nurses
build rapport with parents when referrals are made only at
end of life and when they have had a long relationship with
their primary team. Nurses encountered heightened emoti
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, a
nurses had to communicate with the parents and very ofte
the extended family as well.Nurses feltengaging children
on issues on death and dying,and spirituality was challen-
ging,as discussions with children were dependenton what
parents would allow. Understanding what patients want m
also be difficult when parents colluded and were not truthf
to their child.
Table 2. Categories,Themes,and Subthemes From the Analysis.
CategoriesThemes Subthemes
ChallengesCommunication Communication with children,communication with parents/care givers
Training and knowledgeUnfamiliar diagnoses,assessment skills,doses of medication,communication skills
Personalsuffering Emotive experience,fear and guilt from inexperience,busy workload,moraldistress
Systemic Lack of other disciplines in team,inadequate services in the community,insufficient staff and insufficient
time for home visits
Coping Intrapersonal Meaningfulrole,resilience,motivation,coping skills
Interpersonal Team,colleagues,family,patient’s family
Systemic Informaland formaldebriefing,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
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It’s like sometimes they ask you questions like how long my child
will live . . .for adult patients we can give them the direct prog-
nosis on how long,but sometimes with their parents,if you give
them direct answers it will be a bit difficult for them.There is a
way of communication with the parents.You can’ttalk to them
really direct, you can’t talk to them like you talking to other adult
patients. Sometimes we need to spend more time with the parents
because they are quite easily break down in front of us . . .Nurse 3
I feel that parents are more emotional (when) caring for their child
and sometimes when I reflectback . . .wonder if parents were
making the right choice for the child . . .because they are too emo-
tional, most of the time.—Nurse 2
Challenges in Training and Knowledge
Nurses had referrals for patients with both cancer and noncan-
cer. Some of the illnesses were unfamiliar to them and they felt
challenged when parents wanted information about complica-
tions of the medical illness and prognosis. They found assess-
mentof child’s needs more difficultwithoutuse ofverbal
communication. Clinical examination and doses of medication
were also differentfrom adults.Majority welcomed further
training to improve their knowledge and skills.
. . .because children disease are sometimes. . .‘funny’,lots of
names you never heard before. And . . .I . . . feel that the disease
for children,(parents) wantcure or something like can reverse.
(They) wantthat,(they) don’twantto hear like nothing can be
done. So that’s why it’s challenging, you really need to understand
the disease . . .even some of medication,children and adult the
dosage are not the same.Like for adults,when you already been
using the same dosage you will remember but children, you don’t
use and sometimes the weights are different. . .it’s not easy, it’s
not easy.—Nurse 11
We are not really trained in paediatrics. So we are just learning just
as we see cases, so I would think that if there is a specific training
or some additional. . .specialization or some additional knowl-
edge will be good . . .Just to help us to be able to identify what
is going on. Because paediatrics is really a world on its own, it’s
very different from the adult world . . .Nurse 17
So for me to advice the parents is like . . .‘‘hey, who are you to
give the advice for the parents?, you yourself don’t have any chil-
dren and you are not having their. . .parenting experience’’, sort
of like that.— Nurse 2
Challenges due to PersonalSuffering
Providing care to children and their families was found to be a
very emotive experience for nurses and it was compounded if
they are mothers or have close relatives of the same age. Seeing
a young child die was tough on them spiritually and being pres-
ent with grieving parents and extended families overwhelmed
some nurses.Parents with seemingly unrealistic expectations
also challenged them in providing care for their child. Parents
perceived to make decisions that are not in the patient’s b
interest troubled some nurses.
Nurses are allocated patients by geographical area and
cover each other’s patients when on leave. Some nurses w
concerned about the differential care their patients might
receiving from their colleagues. When families who opted f
end-of-life care at home, end up in hospital, nurses often w
der if they have done enough to advocate for patient or to
pare families.
. . . if the patientis younger. . . around my age. . . 30þ and
below . . .it justthatthinking abouthow life is,it’s very short
(what) they have left. . .so that’s kinda impact me because I put
(myself) there or sometimes I think of my relatives or my cous
who are as (young) as them . . .When it’s a bit more of an adult
like in their 60s 70s and they kinda also ready to let go . . .they
already aware that they are older and they going to die . . .so I
think with younger adults and with kids it’s a bit difficult becau
they not expecting it and they need to go thru a lot emotional
that’s my feeling. Yea so that thing kinda lingers there a little
longer. . .Sometimes I suddenly think of this patient,18 year-
old and he died so young . . .there were a few patients who die
at young age that is still in my mind.Till today I can remember
them . . .so it’s the age thing la . . .not accepting that they dying
so young.—Nurse 10
Challenges Faced Within the System
As pediatric referrals are notmany,each nurse willcare for
only a few children over a long period. Hence some nurses
a dedicated nurse for pediatric patients will allow for more
cient experiential learning. Some nurses were not comforta
seeing children and would prefer not to.
Their busy workload made it difficult for nurses to juggle
planned home visits for the day and to deal with pediatric
cedural emergencies or calls for visits from parents. Paren
more anxious than caregivers of adults and expect visits. W
the number of patients in their care, it was difficult to alloc
sufficient time for home visits and for bereavement follow-
Children with a nonmalignant diagnosis often have a lon
prognosis and require more financial support and respite s
vices,which is not easily obtained.There also seems to be a
lack of other community resources for these families.Some
nurses felt that there should be play therapists,art therapists,
and bereavement workers on their team. Their encounters
doctors who did nothaving enough pediatric knowledge and
experience to assist them were also a source of distress.One
nurse believed a neutral party should do bereavement follo
up to allow parents to speak freely about the care they rec
and one needs to be adequately trained and have sufficien
which nurses don’t.
They (parents) can give us a lot of calls,if the patient has slight
changes, they will give us a call. They are you know very conc
about what’s happening to the patient. I think comparing to a
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sometimes,the patient could have the symptoms for a few days,
then after a few days they will give us a call.—Nurse 10
When they been given false hope then it is quite difficult for us to
work, sometimes it’s (going to) conflict with what we feel will be
more comfortable for the child especially like babies when they
couldn’t talk. Like . . .just like CPR or unnecessary treatment that
will cause more harm to the baby butyea I understand thatwe
should explore more about, more from the parents but I think the
first place is where the false hope was given, it kinda make things
more difficult.—Nurse 1
I think carers need support as well because if the disease is a long
term one, then what happens is that some people get burnt out. . .
when the child was first diagnosed with this disease, a lot of people
paid attention and everyone was coming in to help financially, to
help emotionally, to give support but. . .as time goes by . . .peo-
ple tend to think of it. . .‘oh, this child just going to be this way for
very long time’ and . . .then the supportjustsortof dwindles
down—Nurse 17
But sometimes I feel I do not know if all the doctors will know how
to manage the children dosage or not. . .the doctor also not very
sure, need to find out. . .I can’t prescribe medicine, I need to get
the order . . .I have to wait. So these are the challenges.—Nurse 9
Coping:IntrapersonalResources
Most nurses describe altruistic intentions and despite chal-
lenges, they are able to derive self-motivation and value their
role. They are touched by how their patients cope and have a
sense of admiration for parents who care for a child with life-
limiting illness.When faced with challenging home visits,
nurses coped by being mentally focused and emotionally pre-
pared,maintaining professionalboundaries with compassion
and reminding themselves that they cannot fix everything all
the time. One nurse mentioned that prayers and meditation was
helpful when she was stressed after work. Nurses felt the learn-
ing experience from each family enhanced their confidence and
resilience.Following the death of their patients,some nurses
were worried for the parents and knowing that they were cop-
ing was comforting.
I feel this is something special. . .like I am a special person, like a
angel that go in to the house to help them. When I’m on call, when
I go and see a child . . .when I’m driving on the road . . .I will feel
like . . .I’m quite . . .like special on the road. There are lots of cars
even though very jam (traffic) but the other car is not going to see
patientbutI’m the one going to see the patient.So actually I’m
doing a quite meaningful job. When you enter the house, when you
see the parents, they are very grateful, they say thank you that you
are coming in to help . . .then you will feel that it’s worth it. Even
though you physically tired, but you worth it to help them. There is
no regret to go in to help them because they appreciate us.—Nurse 9
Try not to think of. . .role of a mother because I’m a mother, try
not to think of my children or anyone, family member, immediate
family member. . .try to think of ‘‘I’m a nurse’’, focus, and I’m
going to help the children and family, that’s it. Don’t let any th
interfere during the conversation or during the visit.—Nurse 1
I find that the Muslims are easier to accept the death of the ch
For them, it’s like . . .it’s . . .it’s fated . . .it’s somehow if God
wants them back, you can’t do anything about it and you have
accept, whether you like it our not.—Nurse 4
It’s justfor my own satisfaction really.Bcoz there is a question
mark: how are the parents? So once I did the bereavementvisit,
I know how they are coping and you know what is their future
what is their next plan . . .I feel better at least. So I know how they
are doing.—Nurse 13
Coping:Interpersonaland System Resources
Nurses express their reliance on doctor’s supervision and g
dance especially with clinical assessments and prescription
medications.Visiting patients with a doctor was usefulfor
their learning.Senior colleagues are also a source of emo-
tional support and guidance for patient management.Nurses
valued teamwork for the continuity of patient care especia
during periods of increased patient load and patient emerg
cies.Following a challenging home visit,reflective sharing
and debriefing sessions with colleagues and doctors in a sa
work environmentwas useful.Sharing with close family
members were also importantways to cope.Nurses value
informaland formaldebriefing sessions.Positive feedback
from parents during home visits and atbereavementvisits
reinforces their role as palliative care nurses. The 24-hour
vice for patients helped reassure nurses that their patients
cared for at all times.
I do find helpful is that, when I’m not so clear about what’s go
on and what else I can do . . .I can approach my seniors and talk to
them about it, to ask their opinion. So they might be able to g
new input and things I have never heard of before maybe. Err
other thing is to ventilate because we also face grief and . . .so
having someone beside us . . .to . . .just to know that someone
is there, to listen to us when we want to talk would . . .is a very
good thing.—Nurse 17
The doctor will come to me and talk to me. Don’t know wheth
she can sense that I sad . . .From that, I feel that I’m not alone, I
feel supported. Then not so scared to see more children.—Nur
We can supportthe family from the beginning itselfand then
explain our role and they are more calmer and then they also
a support that they can call us over 24 hours so that they kno
is someone there.—Nurse 10
Discussion
As pediatric palliative care providers are being trained, exi
community services in Malaysia have to provide the requir
interim care.This study looked at nurses from 3 services that
provide palliative care to mainly adultsbut more recently
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children too. The nurses were seeing children without specific
pediatric training but had guidance from doctors and used their
experience with adultpatients to accommodate.Two main
categories emerged from the interviews, challenges faced and
coping strategies employed.
Communication with both children and parents was over-
whelmingly challenging to allnurses.The techniquesthey
employ with children such astalking with and notat the
child,use of creative methods,active listening,starting with
a nonthreatening topic have been previously been described
to be helpful strategies for effective communication.21Having
flexible and innovative communication skills with both child
and parents can improve rapport and promote patient/family-
centeredness care.22 As the nurses revealed,it takes time to
build rapport and trust with a child and their family but it has
shown to improve outcome and satisfaction.21
A child dying is unnaturaland nurses in our study found
dealing with emotions arising within themselves and from par-
ents challenging. They found it helpful to consciously be mind-
ful prior to home visits. Parents and other adults in the family
were often decision makers and hence management plans and
advanced care plans were discussed with them rather than the
patient.It was distressing to nurses when parents were per-
ceived not to be acting on patient’s best interest. It was difficult
for the nurses to advocate for their patient when parents’ expec-
tations were unrealistic or there was collusion.
Sharing and debriefing formally and informally with col-
leagues were useful.Appreciative patients and families and
seeing parentscope well in bereavementare motivating
factors sustaining nurses in their job.Most nurses were also
able to find the job meaningful and are motivated despite the
challenges.
Withoutformaltraining and understanding of the pediatric
specific diseases, nurses felt inadequate. They also thought they
lacked assessment skills for children of different developmental
age but coped with guidance from the doctors and colleagues.
Doctors providing the leadership need to be competent.The
importance of appropriate training for adult providers caring for
children has previously been emphasized.10 The large patient
load and lack of time put pressure on the quality of nurses’ visits
and it was difficult for nurses to meet parents’ expectations of
impromptu visits.Having standards forcare willhelp allay
nurses worry and ensure children and their families receive qual-
ity palliative care.23 Specific nurses for pediatric patients only
may accelerate their learning experience and reduce stress levels
of those who preferred not to care for children.
Despite the racialand religious diversity in Malaysia,the
nurses didn’t perceive any cultural difference in care. However
in bereavement, Muslim families were perceived to have better
acceptance of death.
Conclusion
In Malaysia,awareness and demand forpediatric palliative
care is increasing ahead of policies and training of providers.
This study reinforces the urgent need for integration of general
pediatric palliative care teaching and communication skills
training to both nursing and medical undergraduate progra
A collaborative interdisciplinary approach when developing
training curricular will be helpful as it would reflect the act
practice of pediatric palliative care. Although attention to p
viders’ professional training is important, personal well-bei
and staff supportare vitalto help them remain and flourish
in this field.
Until more pediatric-trained providers are available,there
needs to be collaboration between the child’s primary ped
cian and the community palliative care services,to enhance
sharing of knowledge and skills, for seamless care of patie
between hospital and home.
It will also be importantto develop nationalstandards to
enable equitable delivery of quality palliative care in Malay
Acknowledgments
We thank all the nurses and medical directors from Hospis Malay
Kasih Hospice, and Assunta Palliative Care Centre for their partic
tion. We thank Dr Ednin Hamzah for reading the manuscript.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with resp
the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research,author-
ship, and/or publication of this article.
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