Abstract
Abstract
Background:
Religion and/or spirituality are important values for many parents of critically ill children; however, how religion and/or spirituality may influence which treatments parents accept or decline for their child, or how they respond to significant events during their child's illness treatment, remains unclear.
Objective:
To summarize the literature related to the influence of parents' religiosity or spirituality on decision making for their critically ill child.
Design:
Integrative review, using the Whittemore and Knafl approach.
Setting/Subjects:
Data were collected from studies identified through PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL plus), Embase, Scopus, and PsychInfo. Databases were searched to identify literature published between 1996 and 2016.
Results:
Twenty-four articles of variable methodological quality met inclusion criteria. Analysis generated three themes: parents' religiosity or spirituality as (1) guidance during decision making, (2) comfort and support during the decision-making process, and (3) a source of meaning, purpose, and connectedness in the experience of decision making.
Conclusion:
This review suggests that parents' religiosity and/or spirituality is an important and primarily positive influence on their decision making for a critically ill child.
Introduction
Children in critical care settings who are too young or ill to be involved in decisions about their treatment depend on surrogate decision makers, typically parents, to engage in shared decision making (SDM) on their behalf with the health care team.1–4 SDM in pediatrics involves incorporating parents' values, preferences, and beliefs, including religious and spiritual beliefs. Such beliefs influence which treatments are accepted or declined, or how significant health events, like the death of a child, are approached.4,5
Religion and spirituality are distinct, although related concepts. 6 Religion is shared faith, beliefs, and adherence to practices or rituals that enable individual expression of connectedness to a Higher Power or God.7,8 In this review, religion is used interchangeably with religiosity or religious involvement, and refers to organized religious affiliations. 8 Spirituality, on the other hand, is one's personal search for meaning and purpose, and a trusting relationship to something greater than oneself that is meaningful. 9 Spirituality involves deriving meaning of individual experiences through dimensions of intrapersonal (within oneself), interpersonal (between others and the environment), or transpersonal (beyond self, extending to God or another Higher Power) connectedness. 10
Parents of children in critical care settings report significant religious and spiritual needs during their child's inpatient stay; yet, few parents experience the incorporation of such values by health care providers.11,12 Providers may fail to elicit parents' religious or spiritual beliefs due to discomfort or lack of training.13,14 As a result, treatments for children risk being uninformed by parents' values or biased by health providers, who can overestimate the burden of outcomes that parents are willing to accept.15–17 Understanding how parents' religious and spiritual beliefs influence their decision making during a child's critical care hospitalization can inform decision support interventions, which could improve SDM, and optimize treatment and health outcomes for children and family-centered care for parents. Therefore, the purpose of this integrative review is to understand how parents' religiosity and spirituality influence decision making for a critically ill child.
Methods
Search strategy
We conducted this review using Whittemore and Knafl's updated integrative review method. 18 In consultation with a health care librarian, we performed systematic reviews of five databases from database inception to January 2017: PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL plus), Embase, Scopus, and PsychInfo. Keywords and MESH terms included the following: religion/religious/religiosity, spiritual/spirituality, parents/mother/father/surrogate/guardian, and decision making/maker. The literature search was supplemented with a hand search of reference lists.
Selection of studies
Article selection is presented in a Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) flow diagram (Fig. 1). The review included primary, peer-reviewed research published in English that addressed the relationship between parents' religiosity and/or spirituality and health care decision making for their child 21 years or younger in the intensive or critical care setting. After removing duplicates, 2 authors (M.K.U. and K.D.) independently reviewed the 1642 remaining titles and abstracts, resulting in the exclusion of 1507 studies that did not focus on critically ill children, did not mention parents' health care decision making, religion, or spirituality, or were not research. Two authors (M.K.U. and K.D.) assessed the full text of the remaining 135 studies for eligibility, resolving conflicts through consensus. After full-text review, a total of 24 studies were imported into Covidence®, a web-based software for conducting systematic reviews.
PRISMA flow diagram for selection of review articles.
Data analysis
Two authors (M.K.U. and K.D.) independently assessed the 24 full-text studies using standardized critical appraisal tools from the Joanna Brigg's Institute (JBI). While no study was excluded on the basis of quality appraisal, studies with low rigor contributed less to the analytic process (Table 1). 18 We then utilized Whittemore and Knafl's constant comparison method of data synthesis: data reduction, data display, data comparison, conclusion drawing, and verification. 18 To achieve data reduction and display, one author (M.K.U.) extracted data characteristics, confirmed by a second author (K.D.), from the 24 studies and placed these in Table 2. 19 Two authors (M.K.U. and J.B.H.) achieved data comparison by examining primary data in Table 2, identifying patterns, themes, or relationships. 18 Coding of themes was conducted using the approach outlined by Miles et al. 19 We used thematic analysis to identify codes and subsequent themes for the qualitative data and then clustered quantitative data with the appropriate qualitative data to draw conclusive patterns and major themes. Final themes were verified by a third author (M.T.N.).
Joanna Briggs Institute Quality Appraisal Results
Blank, no; X, yes.
Data Display Matrix Outlining Characteristics of Decision-Making Studies Involving Religiosity and/or Spirituality
BMT, bone marrow transplant; DNR, do-not-resuscitate order; EOL, end of life; LST, life-sustaining treatment.
Results
Included articles
The review included 24 studies published between 1996 and 2016: 16 qualitative, 6 quantitative, and 2 mixed methods. Sample sizes for qualitative studies were 7–73; quantitative 33–162; and mixed methods 19–130. Table 1 includes details of the quality appraisal for each article. The settings for the studies were within the United States (n = 15) or outside the United States (n = 9) in Canada, Iceland, Israel, the United Kingdom, and Taiwan. One multisite study included participants from the United Kingdom and United States. Studies were conducted in four major clinical settings: perinatal/neonatal intensive care; pediatric intensive care; hematology/oncology/bone marrow transplant unit; and the inpatient palliative care setting. Parental decisions in these settings are summarized in Table 3.
Types of Decisions by Setting
Themes
Findings from the 24 studies were grouped according to 3 main themes (and further subthemes): Parents' religiosity or spirituality as (1) guidance during decision making, (2) comfort and support during the decision-making process, and (3) a source of meaning, purpose, and connectedness during decision making. These themes are discussed in the next section.
Guidance during decision making
Parental reliance on religious affiliations and doctrine during life-sustaining treatment or end-of-life decision making
Parents identifying as Catholic were more likely to limit resuscitation for their premature infant when death was imminent, but less likely to withdraw life-sustaining treatment (LST) when a long-term prognosis was poor. 20 In addition, parents affiliated with Orthodox Judaism were more likely to refuse life-limiting treatment, 21 whereas parents with a Buddhist affiliation relied on reincarnation teachings in planning life-limiting treatment for their child. 22 Religious teachings on ordinary versus extraordinary treatments were also influential. 23 Parents who reported the high importance of religiosity were more likely to limit LST, compared to families who reported religiosity as less important. 24
Some parents relied on Spiritism, a set of beliefs, which includes the notion that mediums can communicate information about the future of an infant and mobilize help. 25 Belief in Spiritism led parents in LST decisions and the seeking out of spiritual powers of physicians in the “other world” to aid surgeons in the care of their infant in the hospital. Spiritism also influenced beliefs that the child's outcome was destiny and out of parents' control. 25
However, not all parents were guided by religious affiliations or doctrine when making LST or end-of-life (EOL) decisions.26–28 Deciding between full medical versus comfort care was not different among parents affiliated with Jewish, Muslim, or Catholic traditions. 28 In addition, parents of children with incurable cancer from the Druze religion (characterized by a belief that one's destiny is predetermined by God and reincarnation) 27 consented to a do-not-resuscitate order (DNR) less frequently than parents with a Jewish, Islamic, or Christian affiliation, but these findings were not statistically significant.
Parental reliance on spiritual beliefs during prognostic decision making
At times, parents deferred to their spiritual beliefs for guidance with prognostic decision making for their child, over information provided by the health care team. 29 Parents maintained hope that all would be fine and when given a poor prognosis, prayed and trusted for a miracle. 29
Parental reliance on religiosity and spirituality leads to active/passive decision-making roles
Parents who trusted the authority of a Higher Power or God for their child's health outcome varied in their level of decision-making involvement. Some parents adopted a passive decision-making role, believing their child's health was under God's control and they had no decisions to make.29,30 These parents asked physicians to do “everything they could” for their child. 29 Other parents adopted an active decision-making role, believing that although God controlled their child's health outcome, their role was to be actively involved in LST decisions,31,32 particularly when facing more difficult decisions. 23
Parental reliance on religious affiliation and spirituality during SDM
Parents wanted the clinical team to show awareness of and respect for their spiritual beliefs and incorporate these into health decisions. 33 In one study, 46% of parents reported that sharing their religious affiliation or spiritual beliefs related to faith, meaning, and purpose with providers could facilitate common ground for SDM. 34 These parents welcomed discussions about their spiritual beliefs, particularly when elicited by their child's physician or a chaplain and when their child was seriously ill. 25
Comfort during the decision-making process
Parental reliance on prayer for comfort
During palliative or EOL decision making, parents' prayers reduced their pain, anxiety, sense of isolation, and overall suffering.9,22,23,35 After the death of a child, prayer filled a void created by grief and facilitated close relationships among family members. 36 Prayer could be practiced frequently or occasionally, alone or within a group, and within or outside of a religious institution. 23 Parents who prayed for strength, guidance, or the miraculous recovery of their child found praying for God's help comforting.9,35,37 Even parents who had not previously believed religion important found prayer comforted them during EOL decision making. 25
Parental reliance on hopefulness for comfort
Parental hopefulness occurred in varying amounts 38 and was characterized as some parents wanting to be “good” parents and do everything to ensure their child's health and safety. 30 Alternatively, hope was sometimes a parent's desire for a child's miraculous cure or recovery. 29 Parents were also hopeful when promising medical treatments became available.32,39 A sense of parental hopelessness occurred when health care team members communicated bad news 30 or lacked an emotional response to parental grief. 29
Parental reliance on religious rituals, texts, music, and artifacts for comfort
Parents attributed their infant's recovery to religious rituals, such as baptism or the bestowing of a name with religious origin; these rituals eased parents' distress and brought comfort. 25 Christian Bible stories, referencing the trials of Job and Abraham, reminded parents that God could bring them through difficulties. 23 Religious music or artifacts, like Buddhist charms, at the end of a child's life also brought parents comfort. 22 Parents with religious practices, like reading the Bible, 23 were generally accepting of their child's health outcome after decision making,9,23,36 had less emotional distress, and a more positive perspective on negative outcomes, such as the child's death or disability. 23
Lack of comfort experienced as spiritual distress
In five studies, parents expressed spiritual distress, defined as a disturbance in their spiritual belief system, during their child's critical illness or EOL care. Parents questioned God,23,40 felt deceived by faith, 9 or believed the child's illness was punishment for their own or their child's moral wrongdoing.23,37 These parents declined participation in religious practices, like baptism, believing these to be surrender to the child's death. 25 After a child's death, parents continued to believe in God's existence, but expressed anger with God and questioned God's all-knowing power.23,40 Although distressed, parents continued attending church because they felt solidarity with God, who also experienced the death of a child (i.e., Jesus). 40
Support during the decision-making process
Support from clergy, chaplains, and faith-based communities
African American more than white parents identified spiritual supports, including clergy, chaplains, and fellow congregational members. 41 Support from clergy's prayers, counsel, or discussions about religious texts or formal religious teachings eased parents' burden during and after LST decision making and strengthened parents emotionally.9,23,35,42 Hospital chaplains performed religious rituals, such as baptism, and provided a supportive presence, particularly at the time of a child's death. 36 Fellow congregational members offered additional prayers of support for the ill child and family.9,23
Support from health care practitioners
Parents valued supportive messages from health care practitioners about positive EOL outcomes29,30 and felt supported when physicians offered personal prayers for their child. 22 However, few parents (38%) wanted physicians to pray with them, and fewer parents (13%) requested that physicians initiate prayer. 34 Parents also felt supported by nurses, who provided referral to a chaplain 9 or were involved (more than family, physicians, friends, or other staff) at a child's bedside following life support withdrawal. 42
Parental support to other families
In three studies, parents used their child's illness experience to support other parents making similar decisions.9,39,40 One parent started a church ministry to support parents whose children had died. 40 Other parents encouraged families to rely on the belief that they would see their child again in the afterlife. 9
A source of meaning, purpose, and connectedness during decision making
Parents' relied on their spirituality, defined as deriving meaning, purpose, or having a belief in one's connectedness (or relatedness) to a Higher Power or others, during decision making. 10 Some parents questioned the meaning of long-held spiritual beliefs, such as an all-knowing Higher Power, 40 upon the death of their child. Other parents believed that their relationship with a Higher Power would facilitate connection with their deceased child in the afterlife, where the child would be healthy, 23 happy,9,23,37 and free from suffering.9,23,30,35,37,40 Parents' spiritual belief that their child's existence was dignified helped parents find meaning and purpose after their child's death, 42 and have a sense that the child's illness served a purpose in the parents' lives.23,25,37,39 Parents' faith in God or a Higher Power, and the power of prayer, strengthened family relationships and enabled a watchful presence over siblings of the deceased child. 36,40 A connectedness to others enabled parents to achieve greater compassion and serve as an example to parents experiencing similar illness events.23,36,37,39,40
Discussion
In this review, we identified three themes. First, parents utilize their religious affiliations and religious and spiritual beliefs to guide decision making for their child. Our findings that parents' religious affiliation is important in their decision to opt for or against LSTs, and that parents' spiritual beliefs can be more important in prognostic decision making than provider information, have been reported previously.43,44 However, our finding that parents' religious beliefs guide them to adopt active or passive decision-making roles has not been reported elsewhere. Since parents' perceptions of their degree of involvement may influence enrollment into decision-making research, future studies should explore strategies to obtain significant sample sizes, including expanding inclusion criteria to non-English speaking parents and conducting multicenter studies. 45
Second, we found that parents utilize religiosity or spirituality for comfort or support during the decision-making process. While other studies have focused on the role of chaplains in supporting parents' incorporation of religious beliefs into decision making, 46 the studies we reviewed identified that physicians, in addition to hospital chaplains, help incorporate parents' religious beliefs into SDM. Further research is needed to determine how physicians might better assess parents' religious and spiritual beliefs and incorporate these into SDM. 42
Similar to other studies, this review identified that parents' use of prayer during their child's critical illness or after their child's death provided a sense of comfort.12,47,48 However, in other studies, prayers were a source of comfort originated from others, whereas our review reported parents being comforted by their own prayers. 12 This indicates a need to explore how to support parents' own prayer practices. The concept of hope, which we reported, has in previous studies been associated with parents' wish for a miracle, or desires to provide medical treatments with the goal of cure.49,50 Our review also characterized “hope” as comfort derived from being a “good” parent or ensuring a child's health and safety, highlighting the multidimensional nature of hope, particularly during EOL care when treatments may not achieve recovery.30,33 Also, while prior studies report parents' use of religious rituals, texts, and artifacts to connect with a transcendent being or a religious affiliation, 12 our findings further describe the comforting nature of these avenues for parents.
Our review also suggests that parents felt supported by nurses at the end of a child's life. Other studies have highlighted nurses' advocacy for parents making EOL decisions and their facilitation of positive parent-child relationships.51,52 These findings, with ours, may have implications for involving nurses in assessing parents' spiritual needs, especially in EOL cases. Finally, the finding that parents are likely to provide spiritual support to families in similar illness situations9,26,39 is consistent with results of other studies, which show that traumatic pediatric health care experiences can facilitate greater personal strength. 53 Taken together, these findings highlight the importance of parent networks and the role of specific health care team members in fostering support.
Our third theme, that religiosity and spirituality assist parents in finding meaning, purpose, and connectedness during decision making, is consistent with other studies.54,55 For example, one study of parents of children with life-threatening cancer reported using spirituality, defined as beliefs or connectedness to a Higher Power or God, cosmos, or divine being, to find meaning and generate a sense of purpose in the midst of treatment uncertainty and current or anticipated loss or grief. 54 Furthermore, our finding that the incorporation of parents' spirituality can deter parents' isolation extends previous findings that report the use of strategies to decrease parents' isolation during their child's illness. 55
This review acknowledges several limitations. Because studies focused on seriously or critically ill children, our findings have limited generalizability. In addition, studies were largely cross-sectional and represent parents' religious and spiritual needs at one time point. Some studies had a retrospective component, increasing the risk of recall bias. And despite the rigorous search strategy, results are subject to selection bias, given that English-only studies were selected. The relatively small number of included articles representing diverse samples is likely the result of drawing from geographically homogenous populations and lack of culturally relevant strategies to target minority participants. Future studies should explore decision making among diverse samples for which religiosity and spirituality play an important role. Small sample sizes, lack of power analyses, and likelihood of low statistical power highlight the need for more robust quantitative research in the fields of religion, spirituality, and pediatric critical care research. Finally, while this review utilized a rigorous approach, reliability may be difficult to ensure due to the potential influence of researchers on the selection of themes. 19
Conclusion
This is the first integrative review, of which we are aware, that provides a synthesis of the evidence about the influence of parents' religiosity and spirituality on decision making for a seriously ill child. We found that parents view religiosity and spirituality as a primarily positive and helpful influence when making decisions for their ill child. Parents use religiosity and/or spirituality to help guide decision making, find comfort and support, and derive meaning, purpose, and connectedness from their decision-making experience. In addition to identifying these outcomes reported in the literature, this review offers guidance for the future research agenda into how religiosity and spirituality contribute to decision making for parents in a stressful critical care environment.
Footnotes
Acknowledgments
This project was co-sponsored by the Rockefeller University Heilbrunn Family Center for Research Nursing through the generosity of the Heilbrunn Family; Sigma Theta Tau International Honor Society of Nursing; Eastern Nursing Research Society (ENRS)/Council for the Advancement of Nursing Science (CANS); and Southern Nursing Research Society.
Author Disclosure Statement
No competing financial interests exist.