Psychometric evaluation of the brief RCOPE and relationships with psychological functioning among caregivers of children undergoing hematopoietic stem cell transplant.

OBJECTIVE: Spiritual and religious (S/R) coping is a relevant yet understudied domain of coping among caregivers of children undergoing hematopoietic stem cell transplantation (HCT). The aims of this manuscript are to: (1) conduct the first psychometric evaluation of the Brief RCOPE in this population; (2) examine levels of and changes in S/R coping over time; and (3) explore the relationship between S/R coping trajectories and psychological functioning post-HCT. METHODS: Caregivers (n = 170) of children (ages ≤12 years, n = 170) undergoing HCT completed the Brief RCOPE and the Brief Symptom Inventory (BSI) pre- and at multiple time points post-HCT discharge. Factor structure, internal consistency, and validity were examined. Growth mixture models were used to identify subgroups with similar S/R coping trajectories, with group memberships added to mixture models to explore relationships between group membership and caregiver psychological functioning trajectories. RESULTS: The Brief RCOPE exhibited the previously-supported two factor structure and each subscale demonstrated strong internal consistency (α = 0.85 and 0.92). Validity was supported by significant correlations with BSI scores. There were distinct subgroups of caregivers with different patterns of positive (n = 4 subgroups) and negative (n = 3 subgroups) S/R coping, with negative coping subgroup membership predicting changes in psychological functioning. CONCLUSIONS: The Brief RCOPE is a promising measure for assessing S/R coping among caregivers of children undergoing HCT and has the potential to identify caregivers at risk for poorer long-term psychological functioning.

Behavioral Outcomes of Supervisory Education in the Association for Clinical Pastoral Education: A Qualitative Research Study.

This study advances the work of developing a theory for educating Clinical Pastoral Education (CPE) Supervisors by describing the behaviors which result from the successful completion of CPE supervisory education. Twenty-eight Association for Clinical Pastoral Education (ACPE) Certification Commissioners were interviewed to identify the behaviors demonstrated by Supervisory Education Students (Candidates) which influenced the decision to certify them at the level of Associate Supervisor. Specific behavioral descriptors are listed for each ACPE supervisory competency.

Identifying religious and/or spiritual perspectives of adolescents and young adults receiving blood and marrow transplants: a prospective qualitative study.

The potential benefits (or detriments) of religious beliefs in adolescent and young adults (AYA) are poorly understood. Moreover, the literature gives little guidance to health care teams or to chaplains about assessing and addressing the spiritual needs of AYA receiving hematopoietic stem cell transplants (HSCT). We used an institutional review board-approved, prospective, longitudinal study to explore the use of religion and/or spirituality (R/S) in AYA HSCT recipients and to assess changes in belief during the transplantation experience. We used the qualitative methodology, grounded theory, to gather and analyze data. Twelve AYA recipients were interviewed within 100 days of receiving HSCT and 6 participants were interviewed 1 year after HSCT; the other 6 participants died. Results from the first set of interviews identified 5 major themes: using R/S to address questions of "why me?" and "what will happen to me;" believing God has a reason; using faith practices; and benefitting from spiritual support people. The second set of interviews resulted in 4 major themes: believing God chose me; affirming that my life has a purpose; receiving spiritual encouragement; and experiencing strengthened faith. We learned that AYA patients were utilizing R/S far more than we suspected and that rather than losing faith in the process of HSCT, they reported using R/S to cope with illness and HSCT and to understand their lives as having special purpose. Our data, supported by findings of adult R/S studies, suggest that professionally prepared chaplains should be proactive in asking AYA patients about their understanding and use of faith, and the data can actively help members of the treatment team understand how AYA are using R/S to make meaning, address fear, and inform medical decisions.

Religiosity and religious and spiritual struggle and their association to depression and anxiety among adolescents admitted to inpatient psychiatric units.

This study examines the relationship between religious and spiritual (R/S) struggle and religiosity with depression and anxiety in adolescents admitted to inpatient psychiatric units of a pediatric hospital in the Midwest of the United States. We administered four self-reported scales to 71 adolescents (ages 13-17) to assess religiosity, R/S struggle, depression, and anxiety. The prevalence of R/S struggle among this population was high (88.73%). Significant associations were found between R/S struggle and depression and anxiety, linking greater R/S struggles with more severe depression or anxiety. However, no significant associations between religiosity and depression and anxiety were noted. By examining the prevalence of R/S struggle among this population and its relationship to depression and anxiety, this study contributes to the expanding research on the impact of religion and spirituality on the psychological well-being of adolescents.

Mutually engaged supervisory processes: a proposed theory for ACPE supervisory education.

Nineteen newly certified Association for Clinical Pastoral Education (ACPE) Associate Supervisors were interviewed to determine how they learned to do Clinical Pastoral Education (CPE) supervision. Grounded theory was the qualitative research method used in gathering and analyzing data for this IRB approved study. The emerging theory, Mutually Engaged Supervisory Processes, includes nine processes: Discerning Vocation, Feedback, Support, Supervisory Practices and Identity, Theory, Increased Awareness, Shift in Personhood, Offering Presence, and Owning Authority. Member checks confirmed the trustworthiness of the results.

We were chosen as a family: parents' evolving use of religion when their child has cystic fibrosis.

Parental coping with new CF diagnoses often includes religion; however, little is known about how the use of religion changes over time. Longitudinal grounded theory method, in which parents were interviewed twice the 2 years after their child's diagnosis, was used. Parents constructed the meaning that parenting a child with CF is their vocation, in accordance with "God's plan." A shift from isolation to an outward focus and reentry into the community was clear. The use of faith evolved over time and continues to be a source of support and hope for parents. Clinical implications of parental religion are discussed.

Proposing religiously informed, relationally skillful chaplaincy theory.

Research on the multiple uses of religion/spirituality (R/S) in healthcare and on the practices of healthcare chaplaincy support creation of a middle-range, prescriptive theory for chaplaincy for patients who use R/S in their healthcare experiences. Religiously Informed, Relationally Skillful Chaplaincy Theory (RIRSCT) seeks to integrate research into practice in order to improve spiritual care and allow for testing RIRSCT. The components of RIRSCT are: patients whose religion is a significant part of their worldview often use R/S in healthcare to make meaning, to cope, and to make medical decisions; chaplains should be the members of the healthcare team to assess and address R/S; healthcare teams could provide more personalized treatment by integrating patients' R/S into the treatment plan, which could improve patient experience. This article describes the components of RIRSCT and provides examples of chaplaincy guided by RIRSCT. Selected research articles supporting theory components are reviewed.

Parental Use of Religion and Spirituality in Medical Decision-Making.

New medical technology has extended children's lives, creating challenges for parental decision-making. Many parents utilize religion or spirituality (R/S). This study examined the semi-structured interviews of 24 parents who made significant medical decisions. Major domains included drawing on guidance from an internal or personal R/S source; some described making decisions by surrendering decision-making agency to the Divine; being guided by beliefs in the afterlife, including that their child's suffering would be alleviated in death, and/or making their decision in a partnership with the Divine. Participants also describe being guided by external R/S sources. Participants spoke about receiving counsel from spiritual communities, that God worked through the medical team, and/or seeking guidance through prayer or spiritual writings. Parents use R/S to make medical decisions for their children, and many consider the chaplain to be part of the medical team. Chaplains have a role to play in helping to facilitate the use of religion/spirituality in medical decision-making for those parents who identify as religious/spiritual as well as those who are not currently utilizing their beliefs.

Educating CPE supervisors: a grounded theory study.

This qualitative study was designed to cull the wisdom of CPE supervisors doing especially competent supervisory education and to develop a theory of CPE supervisory education. Grounded theory methodology included interviewing 11 supervisors and coding the data to identify themes. Four primary dimensions emerged along with a reciprocal core dimension, Supervisory Wisdom, which refers to work the supervisors do in terms of their continuing growth and development.

Transforming Chaplaincy Requires Transforming Clinical Pastoral Education.

Clinical Pastoral Education (CPE) is a process focused on developing students' personal integration. Outcomes for CPE need to expand to reflect current research in religion and spirituality because religion and spirituality impacts coping, meaning making, decision-making, and health care outcomes. Focusing CPE outcomes on religious/spiritual beliefs and practices used by patients will equip chaplains to provide research-informed spiritual care for families and discipline-specific information for the interdisciplinary team.

To transfuse or not to transfuse? Jehovah's Witnesses and postoperative hemorrhage in pediatric otolaryngology.

OBJECTIVES: Discuss the ethical issues in the management of postoperative hemorrhage in pediatric patients whose parents are Jehovah's Witnesses (JW) and 2) Describe a framework for shared decision making in this population. METHODS: A recall review of pediatric otolaryngology patients with parents of the JW faith and postoperative hemorrhage was performed over a year long period at a single institution. The literature on transfusions for JW minors was reviewed. RESULTS: Two patients were identified. The first patient had a severe post-tonsillectomy hemorrhage requiring multiple emergency operative interventions. The child developed a hemoglobin of 5.2 g/dl and received an emergent transfusion against parents' wishes. The child subsequently did not require further intervention. The second patient hemorrhaged after a supraglottoplasty and was administered erythropoietin and iron infusion but did not require transfusion (hemoglobin nadir 7.9 g/dl). In both cases hematology was consulted, and extensive discussion with the families and the JW Hospital Liaison Committee occurred. CONCLUSIONS: The risks of hemorrhage should be discussed with JW parents of patients undergoing even routine otolaryngologic surgery. In these cases, early shared decision making with family, the JW Hospital Liaison committee, and hematology was pursued regarding mutually acceptable interventions. Aggressive non-transfusion based resuscitation was carried out to minimize the likelihood of transfusion. In the first case, danger to the patient's life eventually necessitated transfusion in accordance with the patient's best interest and previous case law. A defined framework involving all stake-holders, including Pastoral Care, in the event of postoperative hemorrhage is critical.

Islam, The Holy Qur'an, and Medical Decision-Making: The Experience of Middle Eastern Muslim Families with Children Undergoing Bone Marrow Transplantation in the United States.

Some Arabic-speaking Muslim family members of children requiring bone marrow transplantation receive medical care for their children in the United States. Muslim family members' use of Islam in the course of their child's bone marrow transplantation was studied using grounded theory, a qualitative research method. Eighteen members of Middle Eastern Muslim families with a total of 13 children receiving bone marrow transplantation were interviewed by an Arabic-speaking healthcare provider. Interviews were coded by an interdisciplinary team. Seven key themes were identified.

Characterizing the adequacy, effectiveness, and barriers related to research mentorship among junior pediatric hospitalists and general pediatricians at a large academic institution.

OBJECTIVE: The purpose of this qualitative study was to characterize the adequacy, effectiveness, and barriers related to research mentorship among junior pediatric hospitalists and general pediatricians at a large academic institution. METHODS: Junior faculty and staff physicians in hospital medicine and general pediatrics at a large academic institution were invited to participate in this qualitative study. In-depth interviews were conducted. Experienced mentors were invited to be interviewed for theoretical sampling. Interviews were conducted and analyzed by using grounded theory methodology. RESULTS: Twenty-six (75%) of the eligible physicians, pediatric hospitalists representing 65% of this sample, agreed to be interviewed about their mentoring experiences. Satisfied and dissatisfied participants expressed similar mentoring themes: acquisition of research skills, academic productivity, and career development. Four experienced mentors were interviewed and provided rationale for mentoring clinicians in research. Both groups of participants agreed that institutional support is vital for promoting mentorship. CONCLUSIONS: Junior pediatric hospitalists and general pediatricians indicated considerable interest in being mentored to learn to do clinical research. Developing faculty and staff physicians to their utmost potential is critical for advancement in academic medicine. Mentoring clinical physicians seeking to add research skills and academic productivity to their practice merits study as an innovative path to develop clinical investigators. Hospital medicine, as a rapidly developing pediatric specialty, is well-positioned to implement the necessary infrastructure to mentor junior faculty in their academic pursuits, thereby optimizing the potential impact for individuals, families, learners, and institutions.

Using spirituality after an adult CF diagnosis: cognitive reframing and adherence motivation.

Chronic illness is a significant stressor; the majority of Americans cope utilizing spirituality. Numerous studies demonstrate links between spiritual coping and health outcomes. The purpose of this study was to determine whether persons diagnosed with cystic fibrosis (CF) as adults use spirituality to cope and influence disease management. Semi-structured interviews were completed and analyzed using grounded theory. Data saturation was reached following twelve interviews (83% female); representing 100% participation of those approached and 48% of eligible adults. Persons with late-life CF diagnoses used spirituality to make meaning, understanding themselves in a collaborative partnership with their pulmonologist and God. Supporting themes were: (a) God's intervention depended on treatment adherence and (b) spiritual meaning was constructed through positively reframing their experience. The constructed meaning differed from that of adult parents of children with CF. Late-life diagnosed adults focused on personal responsibility for health. Clinical and research implications for chaplains are presented.

Pediatrician characteristics associated with attention to spirituality and religion in clinical practice.

OBJECTIVE: The literature suggests that a majority of pediatricians believe that spirituality and religion are relevant in clinical practice, but only a minority gives them attention. This project explored this disparity by relating personal/professional characteristics of pediatricians to the frequency with which they give attention to spirituality and religion. METHODS: Pediatricians (N = 737) associated with 3 academic Midwestern pediatric hospitals responded to a survey that requested information concerning the frequency with which they (1) talked with patients/families about their spiritual and religious concerns and (2) participated with them in spiritual or religious practices (eg, prayer). The associations between these data and 10 personal and professional characteristics were examined. RESULTS: The results demonstrated the disparity, and the analysis identified 9 pediatrician characteristics that were significantly associated with more frequently talking with patients/families about their spiritual and religious concerns. The characteristics included increased age; a Christian religious heritage; self-description as religious; self-description as spiritual; the importance of one's own spirituality and religion in clinical practice; the belief that the spirituality and religion of patients/families are relevant in clinical practice; formal instruction concerning the role of spirituality and religion in health care; relative comfort asking about beliefs; and relative comfort asking about practices. All of these characteristics except pediatrician age were also significantly associated with the increased frequency of participation in spiritual and religious practices with patients/families. CONCLUSIONS: Attention to spiritual and religious concerns and practices are associated with a web of personal and professional pediatrician characteristics. Some characteristics pertain to the physician's personal investment in spirituality and religion in their own lives, and others include being uncomfortable with spiritual and religious concerns and practices. These associations shed light on the disparity between acknowledged spirituality and religion relevancy and inattention to it in clinical practice.