Prayer and Religion—Irish Nurses Caring for an Intellectually Disabled Child Who Has Died

This research paper was presented at the Second International Spirituality in Healthcare Conference 2016—Nurturing the Spirit held at Trinity College Dublin, The University of Dublin. 23rd June 2016. Historically, nursing has had a sound “spiritual” grounding. However, some contemporary health literature is questioning spirituality’s relevance, and practitioners often shy away from it. This article aims to highlight the findings of a study which, in exploring the nurse’s personal grief relating to caring for a child with an intellectual disability who has died, identified the practice and value of spirituality in nursing practice. A qualitative descriptive research approach was employed. Semi-structured interviews were undertaken with eight female nurses who had cared for a child with an intellectual disability who has died. Data was analyzed using Newell and Burnard’s pragmatic approach to qualitative data. Ethical Approval was granted by University of Dublin, Trinity College and the relevant healthcare provider. Eight broad themes emerged from the study. “Prayer and Religion” was a sub-theme of “Focusing on the positive”, which is the main focus of this article, and discussed in depth for the first time. Spirituality and religion plays a key role in the daily lives of many nurses, who further embrace this aspect of their lives when managing dying, death and bereavement. It became evident that spirituality was not merely a reactive strategy, but one underpinning a participant’s core nursing values. Nurse Managers and colleagues should continue to acknowledge, respect and support staff’s spirituality.


Introduction
This paper was presented at the Second International Spirituality in Healthcare Conference 2016-Nurturing the Spirit held at Trinity College Dublin, The University of Dublin, 23rd June 2016.
Paediatric palliative care is an area of practice where nurses encounter grief. In this rapidly developing area of nursing, it is important that the care of the professional is considered simultaneously with the care of the children and families [1][2][3]. Nurses receive their support in different ways from varying sources. One area of support is the nurse's own and colleagues' spirituality [4,5].
This paper focuses on the sub-theme of prayer and religion, which was identified in a qualitative descriptive study into the grief experience of eight female nurses who have cared for children with an intellectual disability who have died.

Literature Review
The literature review searched the following professionally respected databases: Cumulative Index to Nursing and Allied Health Literature (CINAHL), Pubmed, Cochrane, Medline, and Internurse.com to uncover from the most reliable peer-reviewed literature what is currently known and not known in this area of nursing practice. The search terms and their equivalents were "grief", "nurse", "nurse's role", "grief experience", "death", "intellectual disability", "palliative care" and "children", "support".
According to the Irish Scope of Nursing and Midwifery Practice Framework, in practicing the art and science of nursing holistically, professional practice should be "grounded in an understanding of the social, emotional, cultural, spiritual, psychological and physical experiences of patients . . . " [6]. While the nursing literature provides a varied range of definitions for spirituality, no one authoritative definition is evident [7], and the term is not very well understood within practice [8]. However, Narayanasamy [9] states that it is basically an individual's search to seek meaning in life. Walsh ([10], p. 158), in discussing Lumen Fidei [11], offers further depth to this in that he speaks of spirituality in terms of giving "meaning and purpose to our lives". The concept "religion" is seen as interconnected, yet separate to "spirituality" and can be understood as the practice by individuals of particular theological beliefs and values through ritualistic frameworks [7,12] and everyday living.
Nurses practice in an increasingly secular age, where many nurses shy away from identifying the spiritual needs of others [7], and, therefore, do not adequately respond. This may raise ethical concerns regarding, for example, omission. Equally, a study by Shinbara and Olsen [13] explored spirituality that relates to nurses grieving for the loss of patients. This study highlights that spirituality is described as a support that nurses use and find effective. Seventy-five percent of the research participants in their study reported that spirituality was important in their daily lives, while seventy percent said that spirituality supported them in coping with the grief associated with patient loss. Holland and Niemeyer [14] discussed the everyday experiences of spirituality relating to professional well-being, specifically related to the effect on burnout levels and staff resilience. MacDonald and Friedman [15] suggest that higher levels of spirituality correlate to a lower level of burnout in nurses.
No research studies were retrieved that focused on the nurse's grief experience when caring for a child with an intellectual disability who has died, thus providing justification for undertaking the study in the first place.

Aim and Objectives
The aim of the study was to explore the individual grief experience of nurses who have cared for a child with an intellectual disability who has died. The purpose was to increase professional knowledge in this area with a view to improving nursing practice. The study's objectives were to ascertain the nurses' understanding of grief, to gain an understanding of the nurses' personal grief experiences, and to establish the support systems nurses utilise to manage personal grief, and evaluate their effectiveness.

Methodology
Research Design: A qualitative descriptive research approach was used. This provided participants with the opportunity to describe their grief experience and how this was managed. This provided an opportunity to gain a deeper understanding of the personal grief experiences of these nurses, and how this may be comparable to other nurses in similar situations.
Ethical Considerations: Ethical Approval was granted by Trinity College Dublin and the relevant healthcare organisation.
Setting: The research study was undertaken in an Irish healthcare organisation for people with an intellectual disability. The interviews were conducted in a private room in the nurse's workplace: respite, residential or school settings.
Recruitment and Participants: Participation in this study was open to all nurse specialisms (i.e., general, intellectual disability, psychiatric, paediatric, and midwives), provided they were registered with the Nursing Board. Purposive sampling was used to recruit participants, who were all recruited from one intellectual disability organisation. Eight registered nurses were selected to partake in the study. These met the inclusion criteria, which included being registered nurses who have worked with a child who has an intellectual disability who has died within the last seven years. Nurses who did not meet this criteria were excluded. This particular timeframe was chosen to ensure the study was open to a large number of nurses. It was felt that a period greater than seven years would not be appropriate, as there may be bias in recall. Other healthcare professionals were also excluded from the study.
The distribution of Participant Information leaflets, Participant Consent forms, and letters inviting nurses to participate in the study was facilitated by a gatekeeper from the organisation. All participants were female, ranging in age from 20 to 65 years of age, with five to 40 years nursing experience. Five were on the live nursing register as Intellectual Disability Nurses and three as General Nurses. While each of the nurses in the study had experienced multiple deaths, none of the nurses reported to have had received training in bereavement.
Data Collection: Semi-structured interviews were conducted using an interview schedule informed by the literature review and the study aims. This allowed the researcher to gather the required data, and enable the participant the freedom to disclose what they felt necessary. Interviews each lasted approximately one hour. Interview data was recorded using a sound-recording device, and transcribed verbatim by the researcher. Participants provided written consent to the interview process prior to the interview, and again verbally on the day of the interview.

Data Analysis
A pragmatic approach to qualitative data analysis [16] was used to analyse the data obtained through the semi-structured interviews. This involved the researcher reading the transcripts of the interviews, and noting any general themes that emerged from the data. Several of the themes were anticipated, such as grief and relationship with the child, but other themes also emerged such as "focusing on the positive" with the sub-theme of prayer/religion. The subject of spirituality had not been anticipated by the researcher. After the re-reading of the transcripts, 24 open coding headings were generated which covered all aspects of the data from each of the eight transcripts. The number of codes was then reduced to eight key themes and their relevant sub-themes using higher order headings. The eight themes were: Grief; Relationship with the child; End of life; Support; Helplessness due to limited experience and knowledge; The family; The funeral and; Focusing on the positive (see [2], p. 587; [4,5]).

Finding
Under the theme "Focusing on the positive", prayer and religion was identified as a sub-theme. During the interview process, six of the eight nurse participants made reference to God and prayer. Participants perceived religion as an integral part of their everyday meaning, life and practice. The nurses demonstrated a faith which was constant, but also from which they obtained their strength during the dying and death of the child, and after the child's death. Their faith was not solely important during their experiences of grief, but it augmented their nursing practice. For example: "God called her that day and she chose to go to him." (Participant 2) "I know he's in heaven-he's one of God's angels now." (Participant 5) "He was sleeping like one of God's angels." (Participant 7) "I knew that he would be in a better place in the arms of God." (Participant 6) "I pray for her." (Participant 2)

Discussion
The findings reported in this paper support Shinbara and Olsen's [13] conclusions that nurses do use spirituality within the context of professional support. Many nurses also use some form of religious resource to help cope with the death of a patient, etc. [17][18][19]. Furthermore, MacDonald and Friedman [15] argue that higher levels of spirituality correlate to a lower level of burnout in nurses. This suggests that spirituality enhances mental well-being and quality of nursing care.
We found that 80% of the nurses interviewed in our study made reference to God and demonstrated that their faith was consistent, and not simply drawn upon at times of difficulty. Our research illustrates that the spiritual care of self and others are considered by some nurses as a core component of nursing care within the context of management of self and colleague support. Our study demonstrates that nurses utilise their spirituality to make sense of and frame their service, the death of the child, to manage the grief they are experiencing and to provide caring support to their colleagues.
However, this is not the case for all nurses. Nurses working within Ireland grew up in a culture where religion was central throughout their education and, in many cases, working lives. However, within the contemporary work environment, the emphasis on spiritual/religious practice has been changing and nurses drawing on their own spiritual resources, as well as meeting the spiritual needs of patients within a holistic framework, appear unclear. Practice operates within a continuum [7]. It can be argued that this continuum has over-assertive/corrosive secularism/agnosticism/atheism on the one end and pushy proselytism on the other. Although, in reality, most nurses probably operate somewhere in the middle.
In terms of implementations for practice, nursing bodies, such as the Royal College of Nursing (RCN) and their Irish counterpart, the Nursing and Midwifery Board of Ireland (NMBI), provide some guidance or make reference to nurses and midwives supporting patients' spirituality, but could extend this to include the spiritual care of staff. Our findings reinforce the fact that many nurses find spirituality effective and supportive. In addition, they offer Nurse managers and staff a mandate to provide proactive and effective support mechanisms for staff through education so that nurses understand the influence and impact of religion on peers-in addition, through, for example, creating a space which respects, understands and enables spirituality so that their peers are not spiritually vulnerable, at risk, or unsafe when providing care to patients and receiving support from peers.
The authors hope to undertake further research that examines, for example, the extent to which nurses feel willing and able to respond to the spiritual needs of colleagues and what effective supports they require.

Limitations
As is the nature of a small-scale qualitative study, the findings may not be generalized and are also context-dependent in terms of being undertaken in one country: Ireland and within one Health Service Provider. In addition, all of the participants happened to practice the same religion.

Conclusions
We practice in an increasingly secular age where space is not always created to acknowledge, respect or promote the practice of spirituality and religion. Spirituality plays a central role in the professional lives of many nurses. These nurses further embrace this aspect of their lives if difficulties arise, such as dying, death and bereavement. It was evident that spirituality was not simply a reactive strategy in a time of need, but one of deep meaning and value to the nurses and was embedded within their holistic nursing care.