Informal Carer Role in End-of-Life Care: A NUR272 Literature Review

This literature review, prepared for a NUR272 course at the University of Sunshine Coast, focuses on the experiences and needs of informal carers during end-of-life care. The review synthesizes findings from seven articles, exploring various aspects such as the effectiveness of the Carer Support Needs Assessment Tools (CSNAT), the impact of financial stress, and the benefits of interventions like internet-based peer support and early palliative care. The review highlights the importance of addressing the psychological, social, and emotional needs of carers, identifying key themes such as the need for social and informational support, and the limitations of current support systems. The review concludes that comprehensive support, including early interventions and communication facilitators, can significantly enhance the quality of life for both carers and patients, while also acknowledging the financial burdens and emotional tolls associated with providing end-of-life care.

Running head:INFORMAL CARER DURING END OF LIFE CARE
Introduction
The person with an adverse health condition that becomes incurable is referred to an End-of-life
(EOL) care. EOL comprises of a range of factors which include palliative care, medical experimentation,
patient’s right to self-determination and efficacy of different medical interventions.it is necessary for the
informal carers to assess the signs of approaching death after analyzing symptom management. End-of-
life care includes non-medical support, along with medical interventions. According to the core values of
National Palliative Care Standards, this literature review will speak about “the strengths and limitation of
the care recipient and their caregivers and family to empower them in managing their situation”. This
literature review will shed light on the necessity of the Carer Support Needs Assessment Tools (CSNAT),
internet-based peer support, social support and emotional support of the informal caregivers. A brief
study on the depressed condition of the caregivers and financial condition has been interpreted. The
project aims to explore core values along with providing informal carer during end-of-life care.
Body
Article 1 comments on the experience of home-based family care to terminally ill people by
considering psychological, physical, practical, financial, spiritual and social costs. The Carer Support
Needs Assessment Tools (CSNAT) indicate requirement of support to manage their family members
along with taking care of their health and well being. To do this study, 233 family caregivers receiving
CSNAT shared their experience through brief end-of-trial of semi-structured telephonic interviews. This
study was done on Silver Chain Hospice Care service, and evaluation was done on only one part of the
three-part evaluation of wedge cluster trial (Aoun, Deas, Toye, Ewing, Grande & Stajduhar 2015). Article
2 is engaged in finding high-quality end-of-life care for patientswith dementia by family carers. To study
this, the guidelines provided by the Economic and Social Research Council were followed by making a
systematic approach. MEDLINE, CINAHL, SCIE, PsyclNF and EMBASE were taken into consideration
for the data sources (Davies, Maio, Rait & Iliffe 2014). Article 3 focusses on the financial cost that the
end of life care recipient’s family bears. To study a search strategy using seven databases which include
MEDLINE, EMBASE, CINAHL, AMED, Web of Knowledge, Cochrane and Econlit was taken into
consideration(Gardiner, Brereton, Frey, Wilkinson-Meyers & Gott 2014). Article 4 determines whether
an intensive care unit (ICU) communication facilitator is capable of reducing family stress while
intensifying end-of-life care. For this study, a randomized trial was conducted in two hospitals. The
patients chosen have mortality greater or equal to 30%. Facilitators provided communication between
families and clinicians (Curtis, Treece, Nielsen, Gold, Ciechanowski, Shannon, Khandelwal, Young &
Engelberg 2016). Article 5 is based on finding the key components of internet-based interventions that are
focussed in supporting the caregivers to people with dementia and asses its effectiveness. To study this, a

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INFORMAL CARER DURING END OF LIFE CARE.
narrative synthesis approach is adopted with thematic analysis and tabulation. A systematic review of
randomized controlled trials, quantitative, quasi-experimental designs and qualitative studies were
conducted following the guidelines provided by Centre for Reviews and Dissemination (Hopwood,
Walker, McDonagh, Rait, Walters, Iliffe, Ross & Davies 2018). Article 6 determines the impact of early
and delayed palliative care interventions for caregivers of patients with advanced cancer. A total of 122
caregivers of patients were assigned to receive weekly telephone coaching sessions, bereavement call and
a monthly follow up (Dionne-Odom, Azuero, Lyons, Hull, Tosteson, Li, Li, Frost, Dragnev, Akyar &
Hegel 2015). The purpose of Article 7 is to identify the support and the needs of the caregivers dealing
with a person having a chronic illness thus helping them to manage the situation effectively. This study
aims to fulfil the needs of the caregivers by different types of telephone services. A qualitative design
with semi-structured interviews was made taking 34 caregivers for the study (Ploeg, Biehler, Willison,
Hutchison & Blythe 2016)
Table
Key theme <Author/s and Date>
The Carer Support Needs
Assessment Tools (CSNAT)
Aoun, Deas, Toye, Ewing, Grande & Stajduhar 2015
High-quality end-of-life care Davies, Maio, Rait & Iliffe 2014
Financial stress during end of
life care
Gardiner, Brereton, Frey, Wilkinson-Meyers & Gott 2014)
Communication facilitator Curtis, Treece, Nielsen, Gold, Ciechanowski, Shannon, Khandelwal, Young &
Engelberg 2016
Internet-based interventions Hopwood, Walker, McDonagh, Rait, Walters, Iliffe, Ross & Davies 2018
Early and delayed palliative
care interventions
Dionne-Odom, Azuero, Lyons, Hull, Tosteson, Li, Li, Frost, Dragnev, Akyar
& Hegel 2015
Support and the needs of the
caregivers
Ploeg, Biehler, Willison, Hutchison & Blythe 2016
Discussion
According to the study of Article 1, the author identifies positive experience using CSNAT has
been reported. The strengths and limitations of the informal carers were identified and CSNAT is found to
be effective as they were engaged in conversation about their priorities and needs. CSNAT is highly
useful for informal carers to overcome their reluctant nature and help themselves by identifying their
needs and express their feelings. From the study of Article 2, the author recognized that not much
attention was given to family carers who gives end-of-life care to individuals with dementia thus
displaying their limitations. In Article 3, the author identified three main areas: out of pocket expenses,
work-related costs and carer time cost. The study says financial burden increases when the disease of the

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INFORMAL CARER DURING END OF LIFE CARE.
care recipients reaches an advanced stage. Early palliative care can help caregivers to plan and manage
financial stress and empower them in managing the situation. According to Article 4, the author identified
that communication facilitator might help in reducing depression among the family of the end-of-life care
recipients, but there was no difference in anxiety and PTSD. The author has also observed that no
significant improvement is observed within three months. From Article 5, the author identified a broad
variety of interventions that focussed on psychological support, peer support but could not analyze the
effectiveness of support. This study, however, suggests that internet-based peer support can be a
beneficial factor for family caregivers. The interaction with health professionals was also found to be
positive. From Article 6, the author identified that intervention of early telehealth palliative care reduced
depression, but no such difference is observed in the quality of life and burden in this study. However,
early palliative care for the caregivers of the patients can maximize their quality of life. From Article 7,
the author identified the key needs of the caregivers, which includes the need for social life, informational
support, instrumental support and emotional support. The long term care providers are much in the needs
of the support rather than the short term care provider.
Conclusion
This literature review concludes that end-life-care can enhance the life process of the patients and
improve their quality of life. Use of CSNAT can enhance the life of informal caregivers. Financial stress
is depicted as another burden in the lives of an informal carer while providing end-of-life care.
Communication facilitator is identified as another technique to reduce depression among the family.
Internet-based peer support and early palliative care can maximize the quality of life of the caregivers.
Along with this, the needs of informal caregivers were also identified.

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INFORMAL CARER DURING END OF LIFE CARE.
References
Aoun, S., Deas, K., Toye, C., Ewing, G., Grande, G. & Stajduhar, K., 2015, ‘Supporting family
caregivers to identify their own needs in end-of-life care: Qualitative findings from a stepped wedge
cluster trial’. Palliative medicine, no. 29(6), pp.508-517.
Curtis, J.R., Treece, P.D., Nielsen, E.L., Gold, J., Ciechanowski, P.S., Shannon, S.E., Khandelwal, N.,
Young, J.P. & Engelberg, R.A., 2016, ‘ Randomized trial of communication facilitators to reduce family
distress and intensity of end-of-life care,’ American journal of respiratory and critical care medicine, no.
193(2), pp.154-162.
Davies, N., Maio, L., Rait, G. & Iliffe, S., 2014, ‘Quality end-of-life care for dementia: What have family
carers told us so far? A narrative synthesis. Palliative Medicine’, no. 28(7), pp.919-930.
Dionne-Odom, J.N., Azuero, A., Lyons, K.D., Hull, J.G., Tosteson, T., Li, Z., Li, Z., Frost, J., Dragnev,
K.H., Akyar, I. & Hegel, M.T., 2015, ‘ Benefits of early versus delayed palliative care to informal family
caregivers of patients with advanced cancer: outcomes from the ENABLE III randomized controlled
trial’, Journal of clinical oncology, no. 33(13), pp.1446.
Gardiner, C., Brereton, L., Frey, R., Wilkinson-Meyers, L. & Gott, M., 2014, ‘Exploring the financial
impact of caring for family members receiving palliative and end-of-life care: a systematic review of the
literature’. Palliative medicine, no. 28(5), pp.375-390.
Hopwood, J., Walker, N., McDonagh, L., Rait, G., Walters, K., Iliffe, S., Ross, J. & Davies, N., 2018,
‘Internet-based interventions aimed at supporting family caregivers of people with dementia: systematic
review’, Journal of medical Internet research, no. 20(6), pp.e216.
Ploeg, J., Biehler, L., Willison, K., Hutchison, B. & Blythe, J., 2016, ‘ Perceived support needs of family
caregivers and implications for a telephone support service,’ Canadian Journal of Nursing Research
Archive, no. 33(2).