JURNAL KEPERAWATAN MENJELANG AJAL

PALIATIF
Jurnal 1 ” KEBUTUHAN PERAWAT DALAM MEMBERIKAN ASUHAN
KEPERAWATAN PALIATIF PADA ANAK: LITERATURE REVIEW”

Jurnal 2“Palliative Care in Dementia: Literature review of nurses’ knowledge

and attitudestowards pain assessment.”

Di SusunOleh :
Nama : Nafa Clarissa
Nim. : 18.11.108
PSIK III B

DOSEN PEMBIMBING :
Bapak Ns.Samuel Ginting,S.Kep

INSTITUT KESEHATAN MEDISTRA LUBUK PAKAM

FAKULTAS KEPERAWATAN DAN FISIOTERAPI
PROGRAM STUDI ILMU KEPERAWATAN
T.A 2020/2022
 JURNAL 1

KEBUTUHAN PERAWAT DALAM MEMBERIKAN ASUHAN KEPERAWATAN

PALIATIF PADA ANAK: LITERATURE REVIEW

NURSES’ NEED TO PROVIDE PALLIATIVE NURSING CARE TO CHILDREN:

LITERATURE REVIEW
Fanny Adistie1*, Valentina Belinda Marlianti Lumbantobing2, Nenden Nur Asriyani Maryam3,
Sri Hendrawati4
1,2,3
Fakultas Keperawatan, Universitas Padjadjaran
*Email korespondensi: fanny.adistie@unpad.ac.id

Abstract
Introduction: Providing palliative nursing care to children with terminal illnesses, as well as children in
dying conditions is a challenge for the nurses themselves. Nurses must be able to provide optimal pediatric
palliative care. Methods: The purpose of this literature review is to identify what are the needs of nurses in
providing pediatric palliative care. The search strategy is conducted through the Proquest, EBSCO, and
Science Direct databases. The keywords used are nurse, needs, palliative care, end of life care, terminal care,
children, and pediatric. Inclusion criteria are English-language articles published in 2008-2018. The study
was criticized by using the Critical Appraisal Tool from JBI and for mixed method studies using Mixed
Methods Appraisal Tool Version 2018. Eight studies met the criteria for review. The results and analysis of
the review showed that in providing pediatric palliative care nurses need adequate support in dealing with
stress and fatigue and require specific education and training related to pain management and end of life
communication to improve nurses' abilities and competencies in providing pediatric palliative care. Discuss:
Therefore, it is important for the hospital to facilitate nurses in attending education and training related to
pediatric palliative care so that nurses can optimally provide palliative care to children in an effort to improve
the quality of life for children and their families.

Key words: nurses’ need, nursing care, palliative, pediatric

Pendahuluan paliatif, kematian pada anak merupakan hal

Perawatan paliatif tidak hanya yang jarang namun dapat menjadi sesuatu hal
dibutuhkan oleh orang dewasa yang yang tragis(Mitchell & Dale, 2013).Setiap
mengalami penyakit terminal, karena saat ini tahunnya di Amerika, setidaknya 50.000 anak
tidak sedikit anak-anak yang mengalami meninggal dan 500.000 anak mengalami
kondisi terminal karena mengidap penyakit kondisi yang mengancam jiwa dan di dunia
yang mengancam nyawa maupun life-limiting jumlahnya mencapai jutaan (Himelstein,
illness. Terdapat peningkatan jumlah anak di Hilden, Boldt, & Weissman, 2004) .
komunitas yang membutuhkan perawatan Sementara di Indonesia sendiri sekitar

Journal of Nursing Care & Biomolecular – Vol 3 No 2 Tahun 2018 - 64

147.000 anak meninggal setiap tahun pemberian perawatan paliatif pada anak,
(Unicef, 2015). perawat mempunyai peran yang sangat
Menurut Guyer dalam Wong (2008), penting sebagai pemberi asuhan baik bagi
penyebab kematian terbanyak pada bayi anak maupun keluarganya.
antara lain sindrom pernapasan, prematuritas, Pemberian perawatan paliatif pada anak
bayi berat lahir rendah serta sindrom dapat dilakukan mulai dari anak pada usia
kematian bayi mendadak. Sementara neonatus hingga remaja. Tentunya pemberian
penyebab kematian terbanyak pada anak usia perawatan paliatif yang dilakukan harus
5 – 9 tahun menurut Hoyert, Kochaneck dan disesuaikan dengan kebutuhan anak pada
Murphy dalam Wong (2008), adalah cedera tahapan usia tersebut beserta keluarganya.
(kecelakaan), dan neoplasma ganas dan pada Menurut Kenner (2016), perawat sering
remaja usia 15 sampai 19 tahun penyebabnya menjadi orang yang tahu di mana rencana
antara lain, kecelakaan, pembunuhan, bunuh perawatan paliatif ditempatkan dan yang
diri, neoplasma ganas, dan penyakit jantung. memastikan bahwa tim mengetahui rencana
Anak yang menghadapi life-limiting illness untuk memastikan koordinasi perawatan,
harus mendapatkan akses pada perawatan namun banyak perawat yang sedikit
paliatif yang kompeten, welas asih, dan mendapatkan atau malah sama sekali tidak
sesuai dengan perkembangan yang pernah mendapatkan pelatihan mengenai
ditawarkan mulai dari saat penetapan perawatan paliatif bagi neonatus. Menurut
diagnosis (American Academy of Pediatrics, (Mitchell & Dale, 2013), terdapat beberapa
2000). hambatan dalam pembuatan rencana
Menurut World Health Organization keperawatan lanjut bagi pasien anak yang
perawatan paliatif adalah perawatan yang membutuhkan perawatan paliatif, yaitu
meningkatkan kualitas hidup pasien yang kesulitan dalam mengangkat masalah,
sakit parah dan keluarga mereka, mengurangi lintasan penyakit yang tidak dapat diprediksi
rasa sakit dan penderitaan, mendukung pasien sehingga sulit untuk mengidentifikasi kapan
dalam proses kematian, pandangan yang mati harus memulai diskusi, masalah
sebagai proses kehidupan alami, multikultural, dan kurangnya pelatihan dan
mengintegrasikan aspek psikologis dan waktu untuk memberikan asuhan
spiritual dari perawatan, membutuhkan tim keperawatan lanjut.
pendekatan, dan dapat diberikan di rumah Dimanapun perawat memberikan
sakit pengaturan apa pun, komunitas, atau perawatan paliatif pada anak baik di rumah
(World Health Organization, 2018). Dalam sakit maupun komunitas, tentunya akan

Journal of Nursing Care & Biomolecular – Vol 3 No 2 Tahun 2018 - 65

memberikan suatu pengalaman tersendiri bagi untuk staf mereka agar dapat menghindari
perawat tersebut. Menurut studi yang kelelahan dan mengurangi compassionate
dilakukan oleh Hinds & Drew (2005), salah fatigue (Kenner, 2016)
satu perasaan yang dapat dialami oleh tenaga Merujuk hal diatas, perawat tentunya
kesehatan saat memberikan perawatan paliatif memiliki kebutuhan yang harus diperhatikan
pada anak adalah “compassion fatigue”, agar perawat dapat memberikan perawatan
gejala-gejala ini adalah gejala serupa yang paliatif pada anak dengan optimal. Namun,
terkait dengan kesedihan dan dapat mencakup saat ini belum banyak penelitian yang
toleransi frustrasi yang lebih rendah, mengkaji tentang apa yang dibutuhkan oleh
ketakutan akan pengasuhan, berkurangnya perawat dalam pemberian perawatan paliatif
tujuan, depresi dan hilangnya harapan, pada anak. Maka dari itu, studi ini dilakukan
berkurangnya kemampuan untuk mendengar untuk mengidentifikasi apa yang menjadi
dan berkomunikasi, dan kehilangan kebutuhan perawat dalam memberikan
kepercayaan diri. Selain itu, menurut perawatan paliatif pada anak.
Meadors
& Lamson (2008), perawat dalam
memberikan perawatan pada anak di
intensive care unit, menyaksikan keluarga
yang mencoba untuk mengatasi penyakit
anak lalu menghadapi kematiannya dan
asuhan

Metode
compassionate ini mengakibatkan kelelahan
bagi perawat. Sebuah studi yang dilakukan
(Shorey, André, & Lopez, 2017)
menyebutkan bahwa dalam menghadapi
kematian perinatal, tenaga kesehatan
professional mengalami dampak psikologis
dan fisik pada kesejahteraan mereka saat
memberikan dukungan pada orang tua yang
berduka. Perawat dapat mengalami stres,
sehingga layanan konseling harus tersedia

Journal of Nursing Care & Biomolecular – Vol 3 No 2 Tahun 2018 - 66

 butuhkan

Semua kata kunci dihubungkan dengan

menggunakan Boolean -OR untuk
Strategi penelurusan dalam literature review ini menggunakan kata kunci dalam bahasa
inggris sebagai berikut:
Tabel 1. Kata Kunci Strategi Penelusuran
PIO Clinical Questions Search strategy / keyword
Population Perawat Nurse
Intervention Perawatan Paliatif pada anak Children; Palliative care, terminal
care, end of life care
Outcomes Pengalaman perawat / apa yang Nurses needs, nurses experience
perawat
mendapatkan sebanyak mungkin kutipan, dan
menggunakan -AND untuk mendapatkan
spesifisitas atau relevansi kutipan. Tujuan
dari strategi penelusuran adalah untuk
mendapatkan studi yang telah dipublikasikan.
Pencarian terbatas dilakukan pada database
Proquest, EBSCO, dan Science Direct
dengan dibatasi tahun pencarian 2008 sampai
2018. Kriteria inklusi pada studi ini antara
lain: (1) Tipe partisipan merupakan perawat
yang memberikan perawatan paliatif pada
anak; (2) Tjipe intervensi yaitu komponen
kuantitatif dan kualitatif dari pengalaman
perawat dalam memberikan perawatan
paliatif pada anak; (3) Tipe outcome adalah
ulasan ini mempertimbangkan studi yang
mencakup pengalaman perawat dalam
meberikan perawatan paliatif pada anak; dan
(4) Tipe studi adalah kuantitatif, kualitatif,
mixed method dan review.
Semua studi yang didapatkan di seleksi
berdasarkan kriteria inklusi yang diinginkan,

Journal of Nursing Care & Biomolecular – Vol 3 No 2 Tahun 2018 - 67

lalu dilakukan penilaian kritis dengan mendapatkan studi yang dianggap
menggunakan Critical Appraisal Tool dari mempunyai kualitas yang baik dan
JBI dan untuk studi mixed method mengecualikan studi yang berkualitas kurang
menggunakan Mixed Methods Appraisal Tool baik.
Version 2018 dengan tujuan untuk

Hasil
Berdasarkan hasil penelusuran pada tiga database ditemukan 871 studi yang berkaitan.
Setelah dilakukan skrining judul dan abstrak, kemudian dikeluarkan 796 studi. Setelah itu,
dilakukan peninjauan teks lengkap dari 21 studi yang tersisa untuk dievaluasi lebih rinci. Dari
jumlah tersebut, didapatkan 8 studi yang memenuhi kriteria untuk dimasukkan dalam literature
review. Proses penelusuran dapat dilihat pada gambar di bawah ini.

Proquest EBSCO Science

Direct

Total
871 artikel
Ekslude
796 artikel
Studi dikritisi
21 artikel
Ekslude
13 artikel
Studi ditinjau
8 artikel

Gambar 1. Proses Penelurusan

Data sintesis dari hasil tinjauan tergambar pada tabel berikut.

Tabel 2. Data Sintesis Hasil Tinjauan

Penulis Tujuan Studi Partisipan Metode Intervensi Hasil
Pearson, H. Untuk Tujuh perawat Pendekatan Asuhan  Perawat membutuhkan
N. (2013) memahami anak yang kualitatif paliatif dukungan yang adekuat
pengalaman berregistrasi, dengan pada untuk menghindari
perawat anak perawat anak semistructured setting stress dan kelelahan
kanker dalam dengan in-depth perawatan  Perawat membutuhkan
memberikan kualifikasi telah Pendidikan spesifik
interview akut
perawatan merawat selama mengenai asuhan paliatif
paliatif di setting 2 tahun, perawat tidak hanya pada tingkat
perawatan akut anak pemula pre-registrasi tetapi
yang belum berkelanjutan dalam
mempunyai mengembangkan
pengalaman profesionalitas
memberikan
asuhan paliatif

Journal of Nursing Care & Biomolecular – Vol 3 No 2 Tahun 2018 - 68

 di luar setting
onkologi
Cook et al. Menjelaskan dan 17 staf perawat Kualitatif Perawat Dukungan rekan kerja,
(2012) memahami dan 5 perawat deskriptif pada anak sumber daya kelembagaan,
perilaku serta praktisi yang dengan dying dan tingkat pengalaman
strategi koping pernah merawat pertanyaan perawat sangat penting
yang anak dengan terstruktur untuk proses koping.
digunakan oleh Mekanisme koping dan
kondisi dying di
perawat anak berduka difasilitasi oleh
unit rawat inap
dalam merawat rekan dan sumber daya unit.
kardiologi
anak dying di
unit rawat inap
kardiologi
Neilson, S., Mengeksplorasi 30 perawat Studi kualitatif Asuhan Kebutuhan untuk
Kai, J., pengalaman komunitas yang paliatif mengembangkan tim yang
MacArthur, perawat anak di pernah pada anak terlatih dan berpengalaman
C., dan komunitas dan memberikan di yang dapat memberikan
Greenfield, perawat anak asuhan komunitas asuhan paliatif pada anak
yang paliatif pada
S. (2010) selama 24 jam dan 365 hari
memberikan anak dengan dalam setahun.
asuhan paliatif kanker
pada anak
dengan kanker
stadium akhir di
rumah
Beckstrand, Meneliti saran 121 perawat Studi End of Life Perawat menginginkan
Isaacson, dari perawat NICU Mixed Method Care di lingkungan fisik yang
Macintosh, NICU untuk NICU menunjang dalam
Luthy, dan meningkatkan pemberian perawatan
Eden. asuhan EOL EOL yang lebih
(2018) baik
pada bayi dalam
Komunikasi yang
kondisi dying
ditingkatkan antara tim
perawatan kesehatan.
Pendidikan atau pelatihan
terkait perawatan EOL
untuk perawat NICU yang
ditingkatkan dan berpusat
pada mengajarkan hal-hal
yang sesuai untuk katakan
kepada keluarga terkait
EOL.

Journal of Nursing Care & Biomolecular – Vol 3 No 2 Tahun 2018 - 69

 Penulis Tujuan Studi Partisipan Metode Intervensi Hasil
Lebih banyak staf
pendukung dalam 24 jam
staf tersedia seperti petugas
sosial, pendeta, atau
dukungan kesekretariatan.
Beberapa perawat ingin
lebih banyak waktu bagi
orang tua untuk
mempersiapkan kematian
anak mereka.
Stayer Memberikan Artikel Analisis Perawatan Tambahan pelatihan formal
(2012) analisis konsep konsep paliatif dapat meningkatkan
perawatan pediatrik keefektifan keahlian dalam
paliatif pediatrik perawatan paliatif
perawatan yang pediatric. Program
menghadirkan pendidikan yang
perawat pediatrik komprehensif dapat
dengan bermanfaat dan mengarah
informasi pada perbaikan kualitas
mendasar hidup anak dan keluarga
mengenai
konsep ini dan
meningkatkan
kemampuan
mereka untuk
memahami,
mengidentifikasi,
menyediakan,
dan kemudian
memenuhi dan
meningkatkan
kebutuhan anak-
anak dengan
penyakit
life-limiting serta
keluarganya
Foster, Untuk Artikel Literature Perawatan Strategi perawatan
Lafond, menggambarkan review paliatif keperawatan
Reggio, dan komponen yang pediatric langsung untuk
Hinds dipilih pada pada anak mencapai tujuan perawatan
(2010) perawatan dengan paliatif pediatrik sangat
paliatif pediatrik kanker penting untuk mengurangi
dari penderitaan anak dan
diagnosis untuk keluarga.
menyembuhkan
atau EOL yang
digabungkan
untuk membantu
perawat dan
dokter dalam
mencapai tujuan
perawatan untuk
anak-anak
dengan kanker
dan keluarganya.

Journal of Nursing Care & Biomolecular – Vol 3 No 2 Tahun 2018 - 70

Bradford, Mengidentifik Staf medis Studi Perawata  Saran untuk
Irving, a si hambatan spesialis kualitatif n mengembangkan
Murray, dan (24%), dengan FGD paliatif layanan pendidikan
Pedersen, kesenjangan perawat pediatrik paliatif
Roylance, dan (32%), staf  Pengembangan model
kesehatan
Berdasarkan hasil kajian dari studi-
studi diatas, hal-hal yang menjadi
kebutuhan dari perawat dalam memberikan
perawatan paliatif pada anak adalah
dukungan bagi perawat serta pendidikan
atau pelatihan perawatan paliatif pada anak.

Kebutuhan akan dukungan bagi perawat

Journal of Nursing Care & Biomolecular – Vol 3 No 2 Tahun 2018 - 71

 Penulis Tujuan Studi Partisipan Metode Intervensi Hasil
Crowe, merencanakan (24%), di seluruh negara
dan Layanan perwakilan bagian
Herbert Perawatan kelompok  Meningkatkan
(2012) Paliatif dukungan kolaborasi
Pediatri masyarakat  Melakukan penelitian
(16%),  Mengadakan
perwakilan program formal
kebijakan terkait bereavement
perusahaan
(2%) dan
orang tua
yang berduka
(2%)
Peng, Untuk 115 perawat Crosssectio Perawata Penelitian
Chen, mengeksplor nal survey n menunjukkan bahwa
Huang, asi paliatif pendidikan yang saat
Liu, Lee, pengalaman neonatal ini diberikan kepada
dan perawat perawat neonatal tidak
neonatal memenuhi kebutuhan
Sheng
dalam mereka.
(2013) merawat Perawat neonatal di
neonatus Taiwan menyatakan
yang dying keinginan yang
dan latar mendesak untuk
belakang pelatihan dalam
pendidikan
mengontrol rasa sakit
mereka
dan komunikasi.
mengenai
perawatan Penelitian
paliatif, serta menunjukkan bahwa
untuk menilai topik yang paling
kebutuhan penting bagi peserta
pendidikan pelatihan adalah
mereka manajemen nyeri dan
komunikasi EOL.
Pembahasan perawat mungkin akan merasa tidak
nyaman
Dukungan bagi perawat dalam
memberikan perawatan paliatif pada anak
sangat dibutuhkan agar perawat dapat
memberikan perawatan paliatif yang
optimal. Menurut Beckstrand, Isaacson,
Macintosh, Luthy, & Eden (2018), perawat
di Neonatal Intensive Care Unit (NICU)
menghadapi berbagai rintangan dalam
memberikan perawatan end-of-life kepada
bayi dalam kondisi dying serta keluarganya.
Pelaksanaan perawatan paliatif pada
neonatus dapat menjadi hal stressful bagi
perawat, karena saat melihat orang tua
menangis dan mengekspresikan

Journal of Nursing Care & Biomolecular – Vol 3 No 2 Tahun 2018 - 72

kesedihannya dan kebanyakan dari perawat
mengungkapkan bahwa mereka tidak tahu
apa yang harus mereka lakukan untuk
mengatasi situasi tersebut (Peng et al.,
2013).
Selain itu dalam memberikan
perawatan paliatif pada anak, perawat
mungkin akan mengalami kelelahan. Hal
ini dikarenakan, perawat dihadapkan setiap
harinya dengan kompleksitas diagnosis,
penatalaksanaan dan perawatan pasien
mereka, sehingga sulit untuk
mengungkapkan secara verbal pengalaman
dan emosi mereka dengan cara yang dapat
dimengerti oleh orang non-medis (Cook et
al., 2012). Maka dari itu, menurut Pearson
(2013), perawat membutuhkan dukungan
yang adekuat untuk menghindari stress dan
kelelahan.
Pemberian perawatan paliatif pada
anak akan memberikan pengalaman yang
unik pada setiap perawat, karena setiap
kasus melibatkan tantangan dan
ganjarannya sendiri, yang dipengaruhi oleh
faktor-faktor seperti manajemen gejala,
dinamika keluarga dan tingkat dukungan
antar-profesional (Neilson, 2010). Karena
itu, gejala-gejala yang dirasakan oleh
perawat ini tidak boleh diabaikan atau
diremehkan, karena ini menunjukkan
bahwa perawat perlu dukungan baik dari
rekan kerja, sumber daya kelembagaan,
serta tingkat pengalaman perawat yang
sangat penting untuk proses koping,
sehingga perawat bisa tetap sehat baik
secara mental dan fisik agar dapat
memberikan perawatan terbaik (Cook et al.,
2012).
Dukungan lain yang dibutuhkan oleh
perawat adalah kebutuhan untuk
mengembangkan tim yang terlatih dan
berpengalaman yang dapat memberikan
asuhan paliatif pada anak selama 24 jam
dan 365 hari dalam setahun (Neilson,
2010). Perawat akan dapat memberikan
perawatan paliatif yang optimal pada anak
jika di bantu oleh tim yang mendukung
Journal of Nursing Care & Biomolecular – Vol 3 No 2 Tahun 2018 - 73
perawatan paliatif yang diberikan oleh
perawat. Seperti yang diungkapkan oleh
(Beckstrand et al., 2018), perawat
membutuhkan lebih banyak staf pendukung
yang tersedia dalam 24 jam staf seperti
petugas sosial, pendeta, atau dukungan
kesekretariatan (Beckstrand et al., 2018).
Meningkatkan kolaborasi juga menjadi hal
yang penting dalam pemberian perawatan
paliatif pada anak (Bradford et al., 2012).
Saat perawat telah mengidentifikasi
masalah, dengan melakukan koordinasi
serta komunikasi yang baik bersama tim
kesehatan yang tepat maka masalah atau
hambatan dalam pemberian perawatan end-
of-life bisa mendapat solusi untuk
mengatasinya
(Beckstrand et al., 2018).
Dukungan selanjutnya yang
dibutuhkan oleh perawat adalah
lingkungan. Perawat menginginkan
lingkungan fisik yang menunjang dalam
pemberianperawatan EOL yang lebih baik
(Beckstrand et al., 2018). Dan dukungan
lain yang dapat membantu optimalisasi
perawatan paliatif pada anak adalah strategi
keperawatan langsung dengan tujuan untuk
mencapai tujuan perawatan paliatif
pediatrik sangat penting untuk mengurangi
penderitaan anak dan keluarga (Foster,
Lafond, & Hinds, 2010).
Kebutuhan akan pendidikan atau
pelatihan perawatan paliatif pada anak
Untuk dapat memberikan perawatan
paliatif pada anak dengan optimal,
berdasarkan hasil tinjauan, perawat
membutuhkan pendidikan atau pelatihan
perawatan paliatif pada anak. Menurut
Pearson (2013), perawat membutuhkan
pendidikan spesifik mengenai asuhan
paliatif tidak hanya pada tingkat pre-
registrasi tetapi berkelanjutan dalam
mengembangkan profesionalitas.
Berdasarkan hasil studi tersebut pendidikan
terkait perawatan palitif sebaiknya dimulai
dari sejak perawat sedang menjalani tahap
pendidikan dan berkelanjutan hingga saat
perawat menjalani pekerjaannya.
Keberlanjutan pendidikan terkait perawatan
paliatif dan bereavement sangat penting
untuk meningkatkan kepercayaan diri
perawat di area ini, sehingga sebaiknya
seluruh tim kesehatan harus terlatih dalam
hal prinsip dasar perawatan paliatif dan
memiliki keterampilan, kepercayaan diri,
serta keahlian yang dibutuhkan untuk
memberikan perawatan optimal bagi
neonatus dalam kondisi dying serta
keluarga mereka
(Nuffield Council on Bioethics, 2007).
Dalam pemberian perawatan paliatif,
perawat mempunyai peran yang sangat
penting sehingga perawat harus memiliki
pengetahuan yang baik tentang tanda dan
gejala paliasi serta kematian dan dying
dalam konteks sosial (Pearson, 2013). Hal-
hal yang menjadi perhatian khusus pada
pemberian perawatan paliatif menurut hasil
tinjauan adalah kontrol nyeri serta
komunikasi pada perawatan end-of-life.
Seperti hasil studi yang dilakukan oleh
Peng et al. (2013), pengontrolan nyeri
merupakan area yang paling dibutuhkan
dalam pelatihan perawatan paliatif bagi
neonatus dan metode pengontrolan nyeri
serta komunikasi dalam perawatan end-of-
life merupakan kompetensi inti. Perawat
mempunyai peran yang penting dalam
pemberian perawatan palitif, sehingga
perawat harus memiliki pengatahuan yang
baik mengenai gejala-gejala paliasi serta
konteks sosial mengenai kematian dan
dying (Pearson, 2013). Menurut Beckstrand
et al. (2018), pendidikan atau pelatihan
terkait perawatan EOL untuk perawat
NICU ditingkatkan dan berpusat pada
mengajarkan hal-hal yang sesuai untuk
katakan kepada keluarga terkait EOL.
Pendidikan serta pelatihan pada
perawatan paliatif bagi anak merupakan hal
yang penting dan menjadi prioritas untuk
memastikan tingginya kualitas perawatan
yang diberikan (Kenner, 2016; Liben,
Journal of Nursing Care & Biomolecular – Vol 3 No 2 Tahun 2018 - 74
Papadatou, & Wolfe, 2008). Perawatan
paliatif pada anak bersifat emosional dan
dapat penuh dengan kesulitan, namun
diyakini dengan dukungan yang tepat dan
persiapan pendidikan perawat akan dapat
memberikan perawatan yang lebih baik
untuk pasien dan keluarga mereka (Pearson,
2013). Selain itu, menurut Stayer (2012),
pelatihan formal tambahan juga dapat
meningkatkan keefektifan dari keahlian
dalam keperawatan paliatif pada anak dan
program pendidikan yang komprehensif
serta bermanfaat dapat mengarah pada
peningkatan kualitas hidup bagi anak dan
keluarga.
Simpulan
Hasil tinjauan menunjukkan bahwa
dalam pemberian asuhan paliatif pada anak
perawat membutuhkan dukungan yang
adekuat baik dari rekan kerja, tim kesehatan
lain serta lingkungan dalam menghadapi
stres dan kelelahan. Perawat juga
membutuhkan pendidikan maupun
pelatihan yang berkelanjutan serta spesifik
terkait penanganan nyeri dan cara
komunikasi endof-life untuk meningkatkan
kemampuan serta kompetensi perawat
dalam memberikan asuhan keperawatan
paliatif pada anak. Merujuk hal tersebut,
penting kiranya pihak rumah sakit untuk
memfasilitasi perawat dalam penyediaan
tim kesehatan khusus untuk perawatan
paliatif pada anak serta memfasilitasi
perawat untuk mengikuti pendidikan
maupun pelatihan terkait asuhan
keperawatan paliatif pada anak agar
perawat dapat dengan optimal memberikan
asuhan paliatif pada anak sebagai upaya
untuk meningkatkan kualitas hidup anak
dan keluarganya.
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Journal of Nursing Care & Biomolecular – Vol 3 No 2 Tahun 2018 - 76

 Palliative Care in Dementia: Literature
review of nurses’ knowledge and
attitudestowards pain assessment.
Michelle burns , sonja mcllfatrick

International journal of palliative nursing 21(8) 400-407, 2015

Acknowledgements

A small grant for this research project was obtained from Macmillan Cancer Relief.

Abstract

Background: Pain is prevalent among older people, yet is often under recognised and under
treated in people with dementia. The nurse has a central role in identifying and appropriately
assessing pain in order to provide effective treatment. Research however suggests there are
significant deficits in this area.
Aim: To explore the evidence on nurses’ knowledge and attitudes to pain assessment in older
people with dementia.
Design: A systematic review of peer reviewed articles published between 2000 and 2014.

Data Sources: Seven electronic data bases (CINAHL, MEDLINE, PsycInfo, Wiley, Pubmed,
ProQuest and OVID) were searched and articles focusing on nurses knowledge and attitudes on
pain assessment towards people with dementia.
Methods:Research participants within the studies reviewed were to include registered nurses
involved in the assessment and management of pain in older adults with dementia from across
all health care settings (e.g. dementia units, nursing homes, community and acute settings).
Results: Data were systematically analysed from 11 papers. Using an inductive approach for
thematic content analysis informed by the theory of planned behaviour five themes was
identified. These included: 1) Challenges in diagnosing pain in dementia 2) Inadequacies of
pain assessment tools 3) Time constraints and workload pressures 4) Lack of interdisciplinary
teamwork and communication 5) Training and education.
Conclusion: Nurses play a key role in the effective management of pain through the use of
pain assessment tools, behavioural observation, and analgesic choice. Pain assessment in
dementia remains challenging for nurses due to the complexity and individualisation of pain
behaviours. The accessibility of appropriate training, workforce stability and a standardised

64
approach to pain assessment are key to the successful management of pain in older people with
dementia.
Keywords: pain assessment, dementia, palliative care, older people, knowledge and attitudes
Introduction
Over the next 40 years, it is anticipated that
globally the number of dependent older
people will increase from 101 million in
2010 to 277 million by the year 2050. Of
these approximately 50% will experience
some form of dementia (Alzheimer’s
Disease International, 2013). Within the
UK there has been a significant shift in
health and social care services from
hospital to community informed by policy
following local strategic reform in order to
provide an equitable service (DHSSPSNI,
2011; DOH, 2012). This presents
challenges for long-term and community
care settings not only due to the increasing
prevalence of the older people but also and
the existence of co-morbidities (European
Commission of Health, 2013). Dementia is
a life limiting disease (Neale et al, 2001),
which requires a palliative care approach to
improve quality of life and person centered
care (Van der Steen et al, 2013). Palliative
care in dementia remains challenging due to
the unpredictability of prognosis and
disease trajectory (Murray et al, 2005;
Zanetti et al, 2009 ). Furthermore, the
behavioural and psychological symptoms
associated with dementia can lead to
significant difficulties in providing
effective symptom management (Husebo et
al, 2011).
65
Background
Pain is highly prevalent among older people
(Horgas et al, 2008; Pautex et al, 2005;
Leoang and Nuo, 2007; Asghari et al,
2006). However it is often not recognised
and under treated in people with dementia
(Husebo et al, 2008; Reynolds et al, 2008;
Closs et al, 2004) with people loosing the
ability to self-report pain (Herr et al, 2006).
The nurse has a central role in identifying
and appropriately assessing pain in order to
provide effective treatment (Buchanan et al,
2014). This requires nurses to have
sufficient knowledge and skills, however
research suggests there are deficits in this
area (Barry et al, 2013; Barry et al, 2012;
Zwakhalen et al, 2007; Jones et al, 2004).
The purpose of this literature review is to
explore and evaluate the evidence on the
knowledge and attitudes of registered
nurses towards pain assessment in older
people with dementia.
There are numerous definitions of pain that
collectively suggest that it is a complex
phenomenon, which presents as an
unpleasant sensory experience that is
uniquely individual (Merskey and Bogduk,
1994; McCaffery et al; 1990; Bonica;
1990). It cannot be adequately defined,
identified, or measured by the observer due
to the subjectivity of the experience.
Therefore pain has often been defined as
‘pain is what the patient says hurts’ (Forbes
and Faull, 1998). Pain that is ineffectively
treated has the potential to cause
psychological responses such as fear,
anxiety and depression. It can also affect
activities of daily living such as mobility,
appetite and sleep. According to Riva et al
(2011), unrelieved pain can result in an
individual experiencing distressing
cognitive impairment, such as
disorientation, mental confusion and a
reduced ability to concentrate. For
individuals with existing cognitive
impairment such as dementia, the
experience of pain can manifest into
behavioural disturbances such as agitation
and aggression (Cohen-Mansfield, 2005).
This can lead to increased distress not only
for the individual but also for their care
givers (Husebo et al, 2008; Hennings et al,
2010). According to Nygaard and Jarland
(2005), pain in people with dementia can
often be undetected, leading to anti-
psychotic drug use being first line for the
management of agitation (Husebo et al,
2011). Therefore it can be argued that the
overall effective management of
undiagnosed pain can reduce behavioural
disturbances and distress (Ahn and Horgas,
2013; Husebo et al, 2011; Calvin, 2011).
Pain assessment in people with dementia is
particularly challenging due to the
difficulty for the individual remembering
their pain, interpreting the question and
maintaining information (Scherder et al,
2005; Cohen-Mansfield, 2005). Therefore
assessment of pain in dementia largely
relies on emotional and behavioural
observation (Monroe et al, 2012). There are
a number of tools available for the
assessment of pain in dementia (Lin et al,
2011; Morello et al, 2007), but the quality
and utility of these tools have been widely
debated (CohenMansfield, 2014; Fuchs-
Lacelle et al, 2008; Buffum et al; 2007).
Nurses have an overall responsibility to
ensure that individuals experiencing pain
are adequately assessed and effectively
managed. They have a key role not only in
the provision of individualised and holistic
66
care, offering treatment options based on
pain assessment and ensuring review of
treatment interventions, but also acting as
patient advocates in coordinating effective
pain management. Whilst there are many
studies examining nurses’ knowledge and
attitudes towards pain in older people in
general, few studies have focused
specifically on pain for people with
dementia (Barry et al, 2013; Barry et al,
2012; Zwakhalen et al, 2007; Jones et al,
2004).
Conceptual
Framework –Theory
of Planned
Behaviour
The theory of planned behaviour has been
widely used in health care as it offers a
clear theoretical model in order to predict
an individual’s behaviour; with beliefs,
perceived behavioural control and
subjective norms being influential factors.
Perceived control is an individual’s
perception of how easy or difficult it is to
perform certain behavior (Ajzen, 1985;
1988) which can be influenced by internal
factors (i.e skills, information, ability,
knowledge) and external factors (barriers,
opportunities, dependence on others). The
TPB identifies that perceived behavioural
control has both an indirect effect through
behavioural intentions, and a direct effect
on behaviour.
The TPB proposes that positive behavioural
change occurs when intentions are changed
through either behaviour, subjective norms
or perceived control. The TPB is a
promising theoretical framework for the
study of identifying nurses’ knowledge and
attitudes to pain in dementia as it includes
beliefs about control factors which may
influence or inhibit the performance of
effective pain assessment. Perceived
behavioural control is an important factor in
the intention to pain assessment. If nurses
perceive pain assessment as difficult to do,
intention will be low. The major themes
identified in this review are displayed in the
context of this model which includes
(figure 1): 1) Challenges in diagnosing pain
in dementia 2) Inadequacies of pain
assessment tools 3) Time constraints and
workload pressures, 4) Lack
interdisciplinary teamwork and
communication 5) Training and education.
These factors are discussed further in the
literature review.
Please insert Figure 1
here
Methods
A systematic review, defined by Fink
(2005) as a method of identifying,
evaluating and synthesising existing
research, was employed to explore the
evidence on nurse’s knowledge and
attitudes to pain assessment towards people
with dementia.
The literature search was conducted on
seven databases CINAHL, MEDLINE,
PsycInfo, Wiley, Pubmed, ProQuest and
OVID databases. Key words and search
terms were refined to include pain,
assessment, dementia, knowledge and
attitudes. The search range included
relevant studies available from 2000-2014.
The search strategy applied strict criteria
and papers were included if they met the
following criteria: 1) peer reviewed 2)
published between 2000-2014 3) study
participants included nurses involved in the
assessment and management of pain in
of
older adults with dementia 3)
Located across all health care settings i.e.
dementia units, nursing homes, community
and acute settings 4) original research that
explored knowledge and attitudes to the
assessment and management of pain in
dementia. Studies published prior to 2000,
studies focusing on pain assessment tools,
research dissertations and papers in
languages other than English were excluded
from the search.
A total of 128 records were retrieved from
the initial database search with the majority
of studies focusing on the quality and
utilisation of pain assessment tools. The
identified literature was peer reviewed for
consensus on the relevance of the articles
for inclusion and exclusion in the review: A
total of 28 potentially relevant articles were
retrieved following a search of the research
databases. These results included cross
sectional surveys, exploratory studies,
concept analysis, training needs analysis,
and randomised control trials. Results were
as follows: CINAHL (11), Psyinfo (2),
OVID (2), ProQuest (9), Wiley (0),
Cochrane (0), and Citations (2) (See figure
2). Duplication of papers was noted and
eliminated in the search. Following the
inclusion criteria 11 papers were included
in the review with the majority being
qualitative research designs.
Please insert Figure
2 here
67

Findings
A summary of all the main findings of the
studies included in the review are outlined
in table 1. Overall sample size varied for
each study depending upon the research
design i.e sample size varied from 7 to 244
registered nurses. The majority of the
review consisted of Canadian, Australian
and American papers published between
2000-2007; however since then, European
studies have emerged and appear to be
leading the way in recent studies.
Please insert Table 1
Relevant data were extracted by one
researcher and was systematically reviewed
using thematic summaries drawing from
the theory of planned behaviour as a
conceptual framework. The studies were
synthesised using tabulation of the findings
into a thematic framework informed by the
theory of planned behaviour. Findings from
each study were categorised into attitudes,
subject norm and perceived behavioural
control. This allowed for the analysis and
divergence of findings into each theme.
Using this methodology five themes were
identified.
Challenges in diagnosing pain in
dementia
A large proportion of older people with
dementia experience pain (Horgas et al,
2008; Pautex et al, 2005; Leoang and Nuo,
2007; Asghari et al, 2006) but this is often
undertreated. Some reasons for this include
difficulty in identifying pain in cognitively
impaired people due to unaltered,
unrecognised or unacknowledged responses
68
to pain (Neville et al, 2006; Chang et al,
2009). Evidence from the literature
suggests that nurses recognise that pain is
highly prevalent in older people and
highlight the difficulty in identifying and
assessing pain in dementia (Barry et al,
2012). Kaasalainen et al (2007) in a focus
group study in Canadian long term care
facilities found that nurses and physicians
identified that an underassessment of pain
in dementia was often due to the
assumption that the absence of reported
pain meant the absence of pain itself. The
identification of pain for people with
dementia mainly relies on nurses’
observation and clinical judgment in the
effective assessment and management of
pain. Kovach et al (2000) found that nurses
working in long term care facilities in the
USA, who had undertaken a pain education
programme one year previously, considered
the identification and assessment of pain in
dementia as a guessing game. However,
Chang et al (2011), in an qualitative study
of nursing home nurses in South Korea
(n=13), found that pain identification in
people with dementia relied largely on
nurses’ individual intuition, developed
through clinical experience in working with
people with dementia. CohenMansfield and
Creedon (2002) examining nurses’
perception of pain indicators in dementia,
found that nurses who worked consistently
with cognitively impaired patients were
able to identify pain through behavioural
responses- whilst junior and less
experienced members of staff were less
likely to recognise this. Therefore, it can be
suggested that nurses’ knowledge of their
patient’s habits and behavioural patterns are
essential in determining pain experience in
dementia (Chang et al, 2011; Cohen
Mansfield and Creedon, 2002; Blomqvist
and Hallberg, 2001).
There was general consensus throughout
the literature that diagnosing pain in
dementia is difficult largely due to
individuals’ inability to self-report pain.
Nurses acknowledged that pain
identification in dementia largely relied on
behavioural observation (Brorson et al,
2014, Chang et al, 2011; Cohen Mansfield
and Creedon, 2002; Blomqvist and
Hallberg, 2001). They expressed a lack of
confidence in determining behavioural
disturbances as part of an individual’s
dementia or as a response to pain. Chang et
al (2011) identified that nurses working in
nursing homes had a lack of confidence in
distinguishing between pain and other
problems such as delirium in dementia
(Martin et al, 2005; Cohen Mansfield and
Creedon; 2002; Kovach et al, 2000). Pain is
therefore often mistaken for psychiatric
problems leading to the potential
inappropriate of treatment – with
psychotropic drug use being the first line
treatment response (Cohen-Mansfield and
Creedon; Kovach et al, 2000).
Inadequacies of pain assessment tools
Pain assessment in individuals with
cognitive impairment relied on behavioural
observation, and the use of standardized
instruments for pain measurement the
absence or presence of physiological
changes. This required nurses to have
sufficient knowledge regarding pain
identification for people with dementia,
alongside the use appropriate pain
assessment tools. It was found that the
majority of nurses identified that traditional
pain assessment models could not be used
in people with dementia (Chang et al,
2009). However, Kaasalainene et al (2007)
found inadequacies in the use of pain
assessment tools in practice. Martin et al
(2005) in Canadian study exploring nurses’
perspectives of the management of pain in
69
dementia found that nurses expressed the
need for better and more accessible pain
assessment tools particularly for people
with severe dementia.
Communication and Interdisciplinary
Teamwork
Effective communication between nurses
and physicians was noted as essential for
effective treatment of pain (Martin et al,
2005). Communication and trust between
nurse and physician was considered
paramount in the management of pain in
dementia (Kaasalainene et al, 2007; Martin
et al, 2005). Kaasalainene et al (2007)
explored the attitudes affecting decision
making in pain management for people
with dementia in long term care facilities.
They found that GPs had a lack of trust in
the pain assessment skills of nurses with
poor communication skills. This lack of
trust in the assessment skills of nurses led
to a reluctance by physicians to prescribe
appropriate analgesia, which ultimately
inhibited optimal pain treatments. It was
noted in the literature, that some nurses
described feelings of powerlessness in the
management of pain in people with
dementia (Blomqvist and Hallberg, 2001;
Brorson et al, 2014). Brorson et al (2014)
in an interview of hospital nurses caring for
patients with dementia at end of life (n=7)
found that nurses described feelings of
frustration due to physician’s lack of trust
about their pain assessment skills, even
though the nurses felt that they had the
knowledge and skills to discuss pain
management with the physician. This
study has a relatively small sample size in
one hospital unit which may not represent
the opinions of the general population.
However, a similar finding was highlighted
by Blomqvist and Hallberg (2001), in a
focus group study (n=24), identifying the
challenges of caring for people with
advanced dementia. They found that an
overall feeling of powerlessness made
nurses less likely to ask questions about
pain.
Time constraints and workload
pressure
High staff workloads, staff shortages, and
time constraints are emergent themes
throughout the literature as nurses’
perceived barriers to effective pain
assessment (Martin et al, 2005; Barry et al,
2012; Kaaslainene et al, 2007). Nurses
were aware of the importance of pain
identification in dementia (Chang et al,
2009) but felt that they have a limited
amount of time to accurately assess pain
and review treatment (Martin et al, 2005).
Time constraints and work pressures led to
lack of continuity between shifts, poor
knowledge transfer between healthcare
professionals and a lack of interdisciplinary
teamwork (Kaasalainene et al, 2007).
Training and Education
Nurses recognised the importance of having
a sound knowledge of pain assessment,
analgesic choice and side effects (Chang et
al, 2011). However misdiagnosing pain,
over medicating patients, analgesic side
effects and risk of addiction remained an
utmost concern to nurses (Neville et al,
2006; Zwakhalen et al, 2007; Barry et al,
2012; Kaasalainene et al, 2007; Chang et al,
2009; Brorson, 2014). In the studies
focusing on education needs, nurses
identified their own need for further
education and training in the assessment
and management of pain in dementia
(Neville et al, 2006; Kaasalainene et al,
2007). Following a regional training needs
analysis of nurses (n=197) caring for people
70
with dementia in the aged care facilities in
Australia , Neville et al (2006) found that
approximately 53% considered their
knowledge in the assessment and
management of pain was average-
identifying a lack of availability and
appropriateness of pain education
programmes. According to Zwakhalen
(2007), in a cross sectional survey
examining nursing home nurses knowledge
and attitudes to pain assessment in the
Netherlands (n=123) , it was found that
whilst the care was considered as
‘satisfactory’ there were knowledge
deficits with regards to pain assessment. It
is important to note, however, that this was
a relatively small sample drawn from two
nursing homes.
Discussion
Throughout the literature it has been
highlighted that nurses play a key role in
the management of pain for people with
dementia. However, lack of knowledge,
training and increased workload pressures
has been identified as barriers to effective
pain management (Neville et al, 2006;
Martin et al, 2005; Kaasalainene et al,
2007; Zwakhalen, 2007). Diagnosing pain
in people with dementia, using the most
appropriate pain assessment tool, and
interdisciplinary communication remains an
utmost concern to nurses (Blomqvist and
Hallberg, 2001; Barry et al, 2012; Brorson
et al, 2014).
It is apparent that nurses are aware of the
importance of recognising behavioural cues
when assessing and identifying pain for
people with dementia (Brorson et al, 2014,
Chang et al, 2011; Cohen Mansfield and
Creedon, 2002; Blomqvist and Hallberg,
2001). However nurses lack confidence in
diagnosing pain as an indication of their
behavioural disturbances (Chang et al,
2011). As a consequence, the treatment of
pain in people with dementia is often
misdirected – with anti-psychotics being
used as first line treatment (Cohen-
Mansfield and Creedon 2014; Kovach et al,
2000). It is imperative that nurses gain
confidence in distinguishing pain as part of
a distress reaction in people with dementia.
This can be achieved through the
facilitation of education programmes
focusing on the signs and symptoms of
pain, and treatment options in individuals
with cognitive impairment (Neville et al,
2006).
It is also noted that pain assessment tools
are not regularly used in practice as they are
considered insufficient for an accurate
assessment (Kaasalainene et al, 2007).
Better assessment requires the use of an
adequate pain assessment tool specially
designed for pain in dementia (Martin et al,
2005). There are a number of tools are
available for pain assessment in dementia
(Lin et al, 2011; Morello et al, 2007),
despite the fact the quality and utility of
these tools have been widely debated
(Cohen-Mansfield, 2014; Fuchs-Lacelle et
al, 2008; Buffum et al; 2007). There is now
a wealth of choice of validated tools
available depending upon the needs of the
individual. Difficulties arise regarding the
evidence base for their use in practice.
Several studies highlighted the importance
of familiarity of the person when
conducting an accurate pain assessment for
people with dementia (Chang et al, 2011;
Cohen-Mansfield and Creedon, 2002;
Blomqvist and Hallberg, 2001). For
experienced nurses who consistently cared
for individuals with dementia, behavioural
cues and mood changes which indicate pain
were more detectable and easier to assess.
It has been suggested, however, that staff
shortages and workload pressures have
71
diminished continuity and familiarity when
caring for the same individuals (Martin et
al, 2005; Kaasalainene et al, 2007; Barry et
al, 2012). This has implications on the
overall quality of care. Greater workforce
stability is required in order to provide
continuity of care and increase the
likelihood of successful pain detection and
assessment.
Effective communication and trust between
nurse and physician was considered
paramount in the management of pain in
dementia (Martin et al, 2005). However,
due to poor communication, the clinical
skills and decision making of some nurses
in relation to pain assessment has been
deemed questionable by some physicians
leading to inadequate patient treatment
(Kaasalainene et al, 2007; Brorson et al,
2014). Good communication and
interdisciplinary teamwork is required to
provide integrated holistic care and
effective pain management. This highlights
the need for better co-ordination and
communication of patient care. The use of
communication templates specifically
focusing on pain assessment, and
interdisciplinary flow charts is
recommended to help improve
multidisciplinary collaboration
(Kaasalainene et al, 2007).
Limitations
It must also be highlighted that the majority
of studies in this review focused ` on long
term care settings which may not represent
the perceptions of nurses in other healthcare
settings. However, this review
systematically examined nurses’ knowledge
and attitudes towards pain assessment for
people with dementia and demonstrated
general consensus within the literature.
Conclusions and Implications for
Practice
This review highlighted that pain
assessment in dementia is challenging for
nurses due to individuals inability to self-
n dementia - often resulting in the
misdirection of treatment. This review also
revealed that lack of training, poor
interdisciplinary communication and
workload pressures are perceived barriers
to effective pain assessment. Therefore
there is a need to develop pain education
programmes specifically designed for
nurses caring for older people with
dementia in order to improve knowledge in
the effective assessment and management
of pain. In order to achieve success, it is
recommended that the strategies such as in-
service training programmes, educational
facilitators, communication templates and
pain management guidelines are
investigated further and adopted in clinical
practice. This review also suggests that the
theory of planned behaviour may be useful
in identifying the determinants of nurses’
knowledge and attitudes to pain assessment
in dementia, and can assist in the
development of strategies to address the
identified barriers.
Implications for future research
Further research is required focusing on the
strategies identified in improving nurses’
knowledge and attitudes to pain assessment
in dementia. In particular, research is
required to focus on the evaluation and
accessibility of current pain education
72
report pain. Nurses recognised that they
cannot rely on traditional models of pain
assessment in dementia; instead they must
consider pain indicators such as changes in
mood and behaviour to provide an accurate
assessment. Promoting patient comfort,
ensuring optimal pain treatment, and
limiting analgesic side effects remains the
utmost concern to nurses caring for people
with dementia. The literature identified
knowledge deficits for nurses in the
identification, diagnosis and treatment of
pain in dementia. Nurses can be indecisive
when distinguishing between pain and other
problems such as delirium as part of
behavioural disturbances i
programmes for nurses in relation to the
care of people with dementia- with
comparative studies on accessibility of
education across healthcare sectors. Further
research is also required to examine the
practical concerns relating to the
interpretation and clinical use of pain
assessment tools for people with dementia
in dementia – with a particular focus on
providing guidance for nurses.
Word count (3,962)
Conflict of Interests
There has been no conflict of interests
throughout the development of this review.
List of figures
Figure 1: Conceptual Overview of nurses’
knowledge and attitudes to pain assessment
towards people with dementia based on Theory
of Planned Behaviour
Figure 2: Search Strategy

Records retrieved:
Databases 7 N= 128

Records screened
Databases 7 N= 128 Citations from relevant articles N=2

Full copies retrieved and assessed for eligibility:

N=28

Records excluded:
Duplicates: N=7 Study Design: N=7 Not nurses perspective N=3

Publications meeting inclusion criteria: N=11

73
To explore Cross sectional Convenience  The majority of nursing home staff felt Relatively small group N
knowledge survey sample. that pain was being correctly assessed for comparisons (n=20 e
and and treated in residents with dementia. and n=25), and study t
beliefs of The majority of respondents had was only sampling 2 h
123 staff
nursing uncertainty about the treatment of pain in nursing e
members of
staff people with dementia including the side homes in the r
psychogeriatric
regarding effects of medication and the risk of Netherlands l
wards in two
pain in
nursing homes  addiction. There was a lack of - limiting the a
elderly consensus that pain is part of the aging generalizability of the n
in the
patients process and that elderly people were study. Social desirability d
Netherlands
with more likely to be affected by pain than of nurses’ responses s
dementia younger people. may have shown bias.

74
Author Aim of Study Design Sample Key Findings

Barry, H. E., To explore the Cross sectional Purposive • The majority of nurse managers felt that
Parsons, C., knowledge, survey sample. dementia can affect the physiological
Passmore, P. A., attitudes and processing of pain.
Hughes, C. M beliefs of 244 nursing home More experienced nurses disagreed that
nursing home managers in pain is a natural consequence of aging.
managers in Northern Nurse Managers recognised the difficulty of
Ireland identifying pain in dementia. Respondents
relation to pain
were unsure if pain assessment tools used
in residents with
in cognitively intact residents could be used
dementia. in residents with dementia.
Nearly all respondents recognised the
importance of considering residents
behaviour when assessing pain. Nurse
Managers less certain about how pain
should be managed, respondents unsure
about the safety of opioid use.
• The most common barriers to pain
management were obtaining an accurate
pain assessment, lack of knowledge or
education and lack of a standardised
approach to pain management.
• Poor staffing levels and lack of time to
assess and lack of general understanding
from GPs also identified.

75
Kaasalainene, S., To explore Qualitative using Stratified  There is a lack of confidence in the
Canada
Coker, E., attitudes and focus groups random sample. assessment of pain due to inability to
Dolovich, L., beliefs that distinguishing between pain and other
Papaioannou, A. affect 4 long term care problems such as delirium in people with
Hadjistavropoulou decisions facilities. 3 dementia. It also identified inadequacies in
s, T., Emili, A. and about separate focus the use of current pain assessment tools in
prescribing groups LTC practice.
Ploeg, J.
and Physicians,  There’s uncertainty in the cause of patients
administering RPNs and RNs behaviour during assessments often
pain resulting in pragmatic and experimental
medications in approach to treatments. Nurses and
older adults physicians identified that an
with dementia. underassessment of pain in dementia often
due to the assumption that the absence of
pain reports in people with dementia means
the absence of pain.
 They also felt that older people are often
reluctant to report pain as it is considered
an expected consequence of ageing or
have fears that reporting pain will be seen
as an annoyance for staff– therefore
unless
residents report their pain it is likely to go
unnoticed. Managing pain medication side
effects was an utmost concern for nurses.
They acknowledge that patient comfort is
essential but were concerned with
overmedicating residents.
 GPs need to rely on nurses on the
monitoring and evaluation of the
effectiveness of pain medication but lack of
trust and respect for the nurses clinical skill
and decision making ability had been
identified in nurses with poor
communication skills. Ineffective
communication and lack of time identified
as barriers to effective pain management.
Respondents can feel peer pressure to give similar answers to the moderator's questions in interviews.

76
Chang, Sung OK; To develop a Concept analysis Purposive  Pain identification in people with dementia
Oh,Younje; Park, conceptual sample. largely relies on nurses’ individual intuition
Eun Young; Kim structure of which is developed through clinical
Geun Myun; Kil pain in experience in working with people with
Suk Young demented dementia.
Interview of Pain identification in dementia mainly relies
patients. 
nurses (n=13) in on nurses’ observation and clinical
3 nursing judgement in the effective assessment and
homes. management of pain.
 Nurse’s knowledge of their patient’s
habitats and behavioural patterns is
essential in determining pain experience in
 dementia. Fieldwork reaffirms that nurses
are able to identify pain in dementia by
behavioural cues. Experienced nurses
identified pain in people with dementia by
behavioural cues and are able to do an
effective physical assessment.
Experienced nurses identified that it is

important to identify origins of pain. They
recognised the importance of having a
sound knowledge of analgesia and side
effects.

Martin, R Williams To explore the Qualitative- Stratified random  Pain in dementia is likely to go
J, prospective of separate focus sample. unrecognised and untreated in residents
Hadjistavropoulos, seniors, and groups with with dementia due to communication
T. Mac Lean M. front line seniors and difficulties.
Four focus
nursing staff healthcare  Seniors with dementia are at increased
groups -
on the professionals risk for escalating and aggressive
assessment Seniors,
behaviours. There were concerns that
and nursing staff,
behavioural disturbances, mood changes
management Nursing home
are related to dementia and not pain - as a
of administrators,
result resident’s treatments are
pain in and informal
 misdirected. Staff reported that effective
dementia. care givers
pain assessment are facilitated my good
communication and documentation
amongst healthcare professionals. Pain
assessment communication between
 nurses is poor. Barriers to good pain
assessment included staff shortages and
poor communication. Pain in dementia is
difficult to manage once

77
 behavioural disturbances are escalated.

Cohen-Mansfield, To determine Mixed Methods Systematic  93% respondents relied on knowledge of

Jiska; Creedon, factors cross sectional random sample. a resident’s habits and needs to identify
Michael. affecting the survey, focus pain in cognitively impaired resident
differentiation groups and 72 staff  Nursing staff felt that pain would go
of follow up unrecognised and staff would feel guilt
members
pain interviews. and upset. New staff members would
of 3 nursing not realise when someone was in pain.
behaviours; homes were
and assess Nurses fell more empathy for residents of
interviewed or whom they are emotionally attached to -
nurses' surveyed. Focus and therefore are more likely to detect
perception of groups were pain in those residents.
indicators of conducted with
 Nursing staff felt that barriers to pain
pain in staffs own ability assessment include restrictions on pain
dementia. to identify pain. management due to concerns of the side
One to one effects of pain medication and risk of
interviews of addiction.
29 nurses were Nurses can think that behavioural problems

conducted in a stem more from psychological distress
558 bedded rather than looking at physical pain. Pain
non-profit assessment can be restricted due to time
nursing home. constraints and work demands. RNs tend
to focus unduly on diagnosis in charts for
explanations of patient behaviour.

Kovach, C., To identify Interviews of Purposive  Nurses identified that assessing pain in
Griffie, nurses' nurses. sample. dementia was not taught during training.
J., Muchka, S., knowledge Followed by Nurses identified that assessment of pain
Noonan, P. and and focus groups. Interview of in dementia is a guessing game.
Weissman, D. experience  Nurses recognised that pain in behaviour
nurses (n=30) in
with assessing and mood can be related to pain - but only
6 LTCs. Nurses
and treating staffs who work consistently with would
had received recognise it. Staffs feel that they need
pain with pain education further education about the assessment
individuals programme 1 process and common signs and symptoms
with dementia. year earlier. of discomfort. Psychotropic drugs were
perceived to be commonly misused - pain
mistaken for psychiatric problems.
 Nurses had positive feelings regarding the
use of narcotic analgesia and consider
pain treatment to be a systematic process.
Comfort was the primary concern of the
nurses, and felt the side effects of
medications such as drowsiness can lead
to falls and decreased ability to eat.
However the benefits of analgesia in
providing comfort and relieving suffering
outweighed the risks of side effects.

78
Chang E1, Daly J, To identify Focus groups Systematic  Several participants reported that pain
Johnson A, challenges and follow up random sample. management in dementia is especially
Harrison K, when caring interviews difficult as it can be difficult to identify
Easterbrook S, for persons 5 focus groups behavioural cues as indicators of pain.
Bidewell J, Stewart with advanced  One third of participants were reluctant to
(n=24)
H, Noel M, dementia use appropriate amounts of analgesia,
Participants
Hancock K. especially opiates.
included
palliative care,  Nurses recognised that we cannot use
aged care and traditional models of pain assessment for
dementia residents with dementia.
specialist
nurses,
medical
specialists from
an area health
service,
residential aged
care staff and
general medical
practitioners.
And 20
individual
interviews from
staff of 10 aged
care facilities

Blomqvist, K. and To highlight Interviews Purposive  Pain common is common in people with
Hallberg, I. R nurses' and conducted using sample. and without cognitive impairment. Majority
older adults open ended of older adults experience pain daily.
views about questions. Interviews of 56  Nurses caring for older adults with
how to cognitive impairment assessed
nurses working
recognise the paralinguistic language, change in body
in one general
presence of position and gait as ways to express pain.
pain in older nursing home Pain would be interpreted by reflecting
adults living in and service about the cause of pain/pain
special needs apartments. characteristics/checking medical history.
housing. Validates pain by asking about presence of
pain touching and observing for reactions.
Would review interventions and evaluate its
effect.

Nurses spoke of feelings of powerlessness
made them less eager to ask questions

about pain.

 Personal characteristics of older people

facilitate in pain recognition - easier to
identify distinct expressions.

79
Brorson H., To describe Semi structure Purposive  All nurses interviewed believed that all
Plymoth, H. nurses' interviews sample: suffering should be alleviated to the extent
Ormon, K., experience possible. Some nurses felt pain in
Bolmsjo, I. regarding end dementia was not managed - people dying
7 nurses
of life pain with pain and anxiety.
working on
relief in
hospital unit  Nurses described feelings of
patients with powerlessness - difficulty in obtaining
interviewed. adequate analgesia; patients suffering
dementia.
longer than necessary. Some nurses felt
that physicians did not listen to them in
regards to pain assessment resulting in
 insufficient analgesia.
Nurses felt frustrated patients not receiving
therapeutic dose. Nurses felt that they had
the knowledge and experience to raise
discussion re: pain relief with physician.

Nurses felt that patients with dementia are
more likely to suffer side effects of
analgesia -increased confusion, increased
risk of falls and constipation.
 Nurses recognised the importance of
behavioural cues such as agitation,
restlessness and facial expressions;
however nurses found it difficult to assess
nature of pain.
 3 out of 7 nurses indicated that family are
important in interpreting patients’ pain
cues. Nurses felt that the ability to interpret
patients’ needs with dementia improved
through experience. Highlighted the
importance of knowing the patient to
improve pain management.
 6 out of 7 nurses mentioned the importance
of good interpersonal relationships - nurses feel
that physicians need to listen and trust their
assessment. Nurses expressed difficulty in
determining pain from anxiety.

80
81

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ANALISA
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85
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aman yang tersisauntukdievaluasilebihrinc
unikpadasetiapperawat, i. Dari jumlahtersebut,
karenasetiapkasusmelibatkanta didapatkan 8 studi yang
ntangandanganjarannyasendiri, memenuhikriteriauntukdimasu
yang dipengaruhiolehfaktor- kkandalamliterature review
faktorsepertimanajemengejala, H. KEKURANGAN
dinamikakeluargadantingkatdu
Dukunganbagiperawatdalamm
kunganantar-profesional
emberikanperawatanpaliatifpa
(Neilson, 2010). Karenaitu,
daanaksangatdibutuhkan agar
gejala-gejala yang
perawatdapatmemberikanpera
dirasakanolehperawatinitidakb
watanpaliatif yang optimal
olehdiabaikanataudiremehkan,
I. KELEBIHAN
karenainimenunjukkanbahwap
erawatperludukunganbaikdarir Memberikanperawatan yang
ekankerja, lebihbaikuntukpasiendankeluar
sumberdayakelembagaan, gamereka
sertatingkatpengalamanperawa J. KESIMPULAN
t yang sangatpentinguntuk
pentingkiranyapihakrumahsaki
proses koping, tuntukmemfasilitasiperawatdal
sehinggaperawatbisatetapsehat ampenyediaantimkesehatankhu
susuntukperawatanpaliatifpada
baiksecara mental danfisik anaksertamemfasilitasiperawat
agar untukmengikutipendidikanmau
punpelatihanterkaitasuhankepe
dapatmemberikanperawatanter rawatanpaliatifpadaanak agar
baik (Cook et al., 2012). perawatdapatdengan optimal
memberikanasuhanpaliatifpada
- Hasil
87
 anaksebagaiupayauntukmening :Research participants within the
katkankualitashidupanakdanke studies reviewed were to include
luarganya. registered nurses involved in the
assessment and management of
pain in older adults with dementia
from across all health care settings
(e.g. dementia units, nursing
homes, community and acute
settings).
ANALISA JURNAL 2
A. JOURNAL TITLE F. THE RESULT
Palliative Care in Dementia: Data were systematically analysed
Literature review of nurses’ from 11 papers. Using an inductive
knowledge and attitudes towards approach for thematic content
pain assessment. analysis informed by the theory of

B. RESEARCHER NAME planned behaviour five themes was

Michelle burns,sonja mcllfatrick identified. These included: 1)

Challenges in diagnosing pain in
C. PURPOSE dementia 2) Inadequacies of pain
assessment tools 3) Time
To explore the evidence on nurses’
constraints and workload pressures
knowledge and attitudes to pain
4) Lack of interdisciplinary
assessment in older people with
teamwork and communication 5)
dementia.
Training and education.
D. BACKGROUND

Pain is prevalent among older

G. DEFICIENCY
people, yet is often under
recognised and under treated in Inadequacies of pain assessment
people with dementia. The nurse tools Time constraints and
has a central role in identifying and workload pressures 4Lack of
appropriately assessing pain in interdisciplinary teamwork and
order to provide effective communication Training and
treatment. Research however education.
suggests there are significant
deficits in this area. H. ADVANTAGES

E. RESEARCH METHOD
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 focusing on nurses knowledge
and attitudes on pain
assessment towards people
with dementia.

I. CONCLUSION

Nurses play a key role in the

effective management of pain
through the use of pain assessment
tools, behavioural observation, and
analgesic choice. Pain assessment
in dementia remains challenging
for nurses due to the complexity
and individualisation of pain
behaviours. The accessibility of
appropriate training, workforce
stability and a standardised
approach to pain assessment are
key to the successful management
of pain in older people with
dementia.

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