In studying of RSLP in medical situations, researchers have focused on three main constructs – religious affiliation, religiosity, and religious coping – and the ability of these constructs to predict mental-health outcomes and decision-making preferences. Many articles regarding religious affiliation have focused narrowly on a religion's prescriptive teachings about death and dying (for adults and for children), based on various authors' reviews of religious texts.22,23
When studies actually examine the relationship for a given individual between stated affiliation and actual beliefs and practices, considerable variation is evident.8,24
Our findings suggest that, while most parents identify with a formal religion, some parents identify more with a sense of spirituality, and other parents either do not identify in such ways or do not wish to discuss the matter.
Studies of religiosity have attempted to measure the level of intensity of religious and spiritual beliefs and practices by asking questions about church attendance, prayer, and other religious behaviors. These studies fail to find a constant direction of association between behaviors and either mental health25
or decision making.26
Our findings suggest that, while specific religious practices are important to families, these may not be associated with end-of-life care beliefs or behaviors. Instead, parents in this study reported that practices such as prayer and Bible study gave them a more general sense of peace and calm.
Studies of religious coping, which consider how religious beliefs and behaviors inform a stressful life situation, have more successfully identified associations between religious coping and mental health over time in many diverse populations, including medically ill elderly people,27
patients with HIV/AIDS,28
and women with breast cancer.29
Furthermore, in a population of adult patients with advanced cancer, religious coping has been associated with the receipt of intensive life-prolonging care near death.30
In two small studies of parents of children with cancer, parents reported strong religious beliefs and increased religious behaviors following their children's diagnosis, and the positive influence of religious beliefs on coping behaviors.9, 13
Most investigations of religious coping in parents of critically ill children, however, have studied bereaved parents, who report that spirituality guided them in end-of-life decision making and provided emotional substance,31–33
but these studies are subject to retrospective recall bias. Nevertheless, our findings, gathered from parents whose children had life-threatening illnesses but had not died, support the association between religion and coping.
This study confirms both the diversity and the importance of the role that RSLP plays in the lives of most, but not all, parents whose children are receiving pediatric palliative care. The study's chief limitation was that the restriction to English-speaking families who were willing to receive palliative care consults in a single pediatric hospital, and participate in the study, excluded both patients from a wider geographic and cultural area and those who were unwilling to participate in palliative care for their children. This is likely to have narrowed the range of parental beliefs and practices reported. Clearly, further research is warranted to identify the interrelationships between RSLP coping in parents of children receiving pediatric palliative care with other areas of support and influence, and attention to possible multilevel mechanisms between the family and larger socioeconomic and cultural structures.
Further research is also warranted to understand parents' frequent use of aphorisms that perhaps may function as heuristics or “rules of thumb”34
to explain their RSLP and allow parents to make effective decisions with a minimum of time, knowledge, and cognitive effort. While such phrases may appear clichéd or superficial, the importance of the words people use when framing both their understanding of a situation, and their actions within a situational framework, should not be overlooked.35
We hope that this study, documenting a RSLP catalog of common concerns expressed by this group of parents, assists clinicians in approaching similar families with an informed but minimalist agenda: namely, to gently explore the religion and spirituality resources and needs of patients and families; to effectively facilitate the coordination of appropriate supports and services; and to be fully present and engaged during their journey.