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Needs of End-of-Life Patient's Caregivers, in Terms of Nursing Care: Systematic Review of the Literature

¹University of Lisbon, Nursing Research & Development Unit, Lisbon, Portugal

²Lisbon’s School of Nursing, Lisbon, Portugal

³Santa Maria’s Pediatric Hospital, Pulmonology’s Service, Lisbon, Portugal

⁴Pulido Valente’s Hospital, Pulmonology’s Service, Lisbon, Portugal

Corresponding Author:

César Fonseca
Researcher, Nursing Research & Development Unit
University of Lisbon, Lisbon, Portugal
Tel: 969-042-537
E-mail: cesar.j.fonseca@gmail.com

Received Date: December 07, 2011; Accepted Date: June 24, 2012; Published Date: June 26, 2012

Citation: Fonseca C, Rebelo T, Andrade C, Lopes P, Franco T, et al. (2012) Needs of End-of-Life Patient’s Caregivers, in Terms of Nursing Care: Systematic Review of the Literature. J Palliative Care Med 2:123. doi:10.4172/2165-7386.1000123

Copyright: © 2012 Fonseca C, et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

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Abstract

Aim: This article aims to identify the needs for nursing care of end-of-life patients’ caregivers and also to enounce nursing interventions, by using a systematic review of the literature. Methodology: The PI[C]OD method has been used, and a search in EBSCO (CINALH, MEDLINE) has been conducted by using keywords and searching full texts, from 2000 until December 2010, resulting in 325 articles in total. Results: The end-of-life patients’ caregivers’ needs identified through this systematic review were: preparation for mourning, desirers’ recognition and fulfilment, communication, establishment of a trustful relationship with a sense of security, caregivers involvement in care, training, resting needs, needs for information, emotional and spiritual needs. Conclusions: Caregivers have different needs that require personal intervention from the nursing team, which is fulfilled through the establishment of a relationship based on trust, and considering that each caregiver has unique characteristics and personal attributes. The caregiver should be involved in care process, enabling knowledge and skills.

Keywords

Caregiver; Needs; Nursing

Introduction

In providing care to terminal patients, the importance of nursing presence and caregiver support throughout their grieving process becomes highlighted. In fact, these caregivers face an enormous emotional suffering and, at the same time, they should be able to join forces to help their relative who is terminally ill. Therefore, the caregiver should be informed about the disease progress, alerted to possible symptoms and to the development of the final stage [1]. Taking the complexity of the experiences lived by family caregivers of persons in end-of-life into account and also considering nursing care in order to respond to their needs, we enounce the following research question: “Which are the nursing care needs of the end-of-life patients’ caregivers?”. Thus we aim to identify these needs and understand how the nurses can respond to them in their practices [2].

Death is a complex reality. There was a beginning, for each of us, and there will be an end [1,2]. The person, becoming aware that death is imminent, experiences very strong feelings and emotions of loss, fear and anxiety, having the need to be heard, understood and supported [3]. In order to answer to these needs it has been developed the so called “modern movement of palliative care”, whose core components are: symptom control; psychological, spiritual and emotional support; caregivers’ support and also during grief; and interdisciplinarity [4]. The dynamic of the palliative care units is centered both on patients and on their cares as well, being these cares considered simultaneously as providers and as receivers of the health care professionals’ interventions. The care process is usually extended throughout grief, by giving emotional and psychological support [4,5]. The diagnosis of a serious illness and the certainty of death cause a break in the family balance, which has consequences both on family’s functioning and structure, generating tension and requiring an adaptation process [3-5]. Furthermore, the family caregiver helps the patient to cope and to adapt to the situation, by being able to provide support [6], maintaining a true and affectionate communication, dealing with the crises that is occurring and, finally, making a healthy grief [7]. The family caregiver should be involved in the care process, by investing in the communication and in the establishment of a partnership that’s interactive, dynamic, available [8], sharing responsibilities with the nursing team, raising his capacities and potentials as a resource [9]. The major caregiver is the person, family caregiver or not, that provides the most care to the person in situation of dependency, without receiving any financial compensation [10], reconciling with their own professional, marital, social and familial responsibilities [8]. Caring for a terminal ill person is a demanding task, which may be exhausting both physically and emotionally [9], implying physical, psychological, social and financial costs. However it is often referred by the caregivers as a unique and rewarding experience, which may promote personal and spiritual development [11]. Therefore, it is relevant to understand the needs of end-of-life patients’ caregivers, in terms of nursing care.

In the present study we use the words “caregiver” and “family caregiver” as being the persons who provide care to those who need supervision or assistance in illness or disability. They may provide the care in the home, in a hospital, or in an institution. Although caregivers include trained medical, nursing, and other health personnel, the concept also refers to parents, spouses, or other family members, friends, members of the clergy, teachers, social workers, fellow patients¹.

Materials and Methods

In order to respond to the outlined goal, a research question has been enounced considering the criteria of the PI[C]OD format [12]: Which are the needs of end-of-life patients’ caregivers, in terms of nursing care?

A research in electronic databases, namely CINAHL Plus with Full Text and MEDLINE with Full Text, both through EBSCO, has been conducted in order to obtain a broader understanding of this phenomenon. The keywords used were previously validated by descriptors of the United States of National Library of Medicine, National Institutes of Health, and searched with the related guidance: [(Palliative Care OR Terminal Care OR Terminally Ill Patients OR Family) AND (Nursing OR Nursing Care OR Nurse) AND (Needs Assessment OR Nursing Care Needs OR Needs)]. The articles were searched in full text and all the articles published between 2000 and December 2010, have been considered, resulting in a total of 325 articles. The systematic literature reviews considers it should include the evidence of the last 5 years, but we consider the time period of 10 years, because of a greater coverage compared to the existing knowledge on the subject in question [12]. In order to evaluate the levels of evidence we used the following six levels of evidence: Level I - Systematic reviews (meta analysis / guidelines for clinical practice based on systematic reviews); Level II - Experimental study; Level III - Quasi experimental study; Level IV - non-experimental studies; Level V - Qualitative study / review of the literature without systematic meta-analysis; Level VI - Opinions of respected authorities / Consensus panels [12].

As inclusion criteria, we privileged articles that were focused upon clinical practice and that highlighted their results among their applicability and impact on health outcomes. As exclusion criteria we considered those articles in which methodological procedures were described in an unclear manner, and also those articles that appeared repeated in the two databases, dated before 2000 and those without corelation with the object of study. The methodological course carried out is shown in the Figure 1.

Figure 1: Process of article survey and selection - Search on CINAHL, MEDLINE - Period 2000-2010.

Results

The Table 1 gives the list of articles that were selected and considered relevant to the study in question.

Table 1: Body of Analysis - Search on CINAHL, MEDLINE - Period 2000-2010.

Discussion

The analyses of these articles contributed to give an answer to our research question, since, explicitly or implicitly, mostly address the needs of end-of-life patients’ caregivers. The three major concerns to consider when improving the quality of palliative care are: emphasis on spiritual care, caregiver involvement and education of professional ethics [13]. In order to support and early prepare the person and the caregiver to the final trajectory of the disease, it is recommended a better education of the person and family as well as better collaboration between multidisciplinary team members [14-16] emphasizing the importance of communication improvement between the caregiver and health professionals, namely regarding treatment decisions [2].

The involvement of caregivers in providing physical care (hygiene, nutrition, elimination, alternating decubitus) and in symptom control, as well assisting or replacing the person in carrying out activities which formerly were performed by her/him, should be considered [7]. Furthermore, assuming the role as a caregiver implies the need for his/her abilities to perform like that, which points to some factors that might help caregivers to perform this role: support provided by the palliative care team, previous experience, quality of the relationship with the person in end of life and living one day at a time [11]. On the other hand, the obstacles when preparing the caregiver include sudden need to perform this role, the responsibility associated to it, communication difficulties with the physicians, not being included on the treatment plan discussion, the unpredictable nature of this role, the physical and psychosocial impact and the frustration while waiting death [2,3].

When providing information to caregivers, some basic elements should be considered: rights and options; demands; dealing with stress and emotional implications of their own health care; promote encouragement and optimism; who to contact for counseling and help; getting support from family and friends, having someone to share their experience; manage the financial implications; rest regularly; access to skilled professionals; how to administrate therapy; how to promote the person comfort; practical aspects of the caregiver’s role (use of equipment, hygiene and nutrition); prepare a death at home; discussing death and “dying”, referring to what to expect during the stage of death, the preparation of grief; and potentially positive aspects of care giving [19,20].

Caring for a person in end of life is a difficult experience at a physical and mental level, endangering the health and harmony of the caregiver. Therefore the moments of rest are also considered to be important, namely by providing a pause from the responsibility assumed as a caregiver, which acts as a return to normal life [6-11].

The experience of caring a person in end of life is a very significant one, encompassing the psychological, emotional and spiritual dimensions. The uncertainty and fears about the future and lost are the most common psychological concerns of caregivers of people in end of life [15]. On the other hand, these caregivers show unsatisfied emotional needs and are not prepared to make decisions concerning terminal treatments due to a lack of informational and emotional support by the professionals [16]. Their spiritual needs are also emphasized, with the collaboration of the chaplain or spiritual assistant, who is capable to assess and meet them, as well as the spiritual needs of nurses [16]. The following strategies emerged in order to support the caregiver: promotion of an effective communication, the caregiver involvement in care provision, negotiation of special needs, optimal control of pain and other symptoms management provision, existential support, preparing the caregiver for the death, caregiver’s participation in the death process and support during the grieving process [9].

In order to implement effectively the strategies enounced above, nurses’ emotional experiences during the care process of a patient in end-of-life and also supporting their relatives and family careers cannot be neglected. This is also considered an important dimension and its importance function as a link to the Palliative Care Team [15-19]. The nurses reveal themselves apprehensive by taking care of a people in end of life and their caregivers, and their concern vary according to the professional grade, gender, department and personal experience [2-7].

To supply quality on palliative care it is necessary for nurses to know the caregiver and the person in end of life (Table 2), establishing an early contact, ensuring a continuity of cares along the time and not being restricted to the physical aspects of cares [13,14].

Table 2: Identified needs on caregivers of person in terminal stage - CINAHL and MEDLINE research (Period 2000-2010).

Conclusion and Implications for Professional Practice

Guide it by the question, “Which are the needs of end-of-life patients’ caregivers, in terms of nursing care?”. We conducted a critical analysis of all of the selected articles and we were able to develop a checklist of the needs of caregivers of a person in end of life, being the majority of these corroborated by the authors that we have consulted for the elaboration of the validity of this systematic review, thus responding to this question.

Being the involvement of the caregiver an essential aspect in the care of the person in end of life, the caregiver should be capacitate to provide them, something that is not been verified, since the studies reviewed reported a deficit in this area.

Nursing interventions to the caregiver of the person in end of life are described in the Table 3, in order to help the caregiver to deal with the situation and improve his quality of life.

Table 3: Nursing interventions identified to the caregiver of people in end of life - CINAHL and MEDLINE Research (Period 2000-2010).

With the elaboration of this systematic review we were able to identify the different needs of caregivers of the person in end of life, as well as identify key nursing interventions in order to give them an answer. The caregiver of the person in end of life has different needs, therefore, in his interventions, the nurse should be alert to recognize and satisfy this needs, based on the establishment of a trustful relationship, developing Nursing as a discipline and profession.

¹2012 MeSH, MeSH Descriptor Data - National Library of Medicine - Medical Subject Headings.

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