Hospital Chaplains: Through the Eyes of Parents of Hospitalized Children

Introduction

More than 50% of Americans pray daily ¹ and 49% pray about health concerns. ² Patients and families report that religious/spiritual beliefs provide comfort in healthcare settings beyond other coping strategies.^3,4 Across sites of medical care, patients incorporate their religious/spiritual views into high-risk decision making.^5,6 We have previously shown that women with a high-risk pregnancy make healthcare decisions for their fetus based on gut feelings and religious views over medical information. ⁷ Yet, few physicians routinely ask about patient spirituality.^8–10

Attending to the religious and spiritual needs of patients and families is endorsed by the Joint Commission, ¹¹ hospital administrators and leadership,^12,13 and national palliative care organizations. ¹⁴ Sixty-eight percent of U.S. hospitals now have chaplain services, ¹⁵ but physicians infrequently refer patients to hospital chaplains.^10,16–18 Although they appreciate the relevance of religion and spirituality to patients' well-being, physicians are hesitant to engage with patients around these issues due to lack of training and fear of damaging the physician–patient relationship.^10,19 Physicians may feel comfortable involving chaplain support for end-of-life care,^8,10 but integration of the hospital chaplain into the culture of day-to-day patient care is not routine.

There is scant information on how families perceive hospital chaplains in pediatric care, but some literature exists on how chaplains perceive their role. Feudtner et al. ²⁰ reported a large unmet need for spiritual care of pediatric patients and families as judged by hospital chaplains in 115 U.S. pediatric hospitals. Perceived barriers to quality spiritual care were physicians' lack of training to recognize spiritual suffering and referrals made too late in the course of an illness for chaplains to provide all the care that families needed.

We were interested in how families of hospitalized children view and utilize hospital chaplains. Specifically, we wondered whether parents perceive the hospital chaplain to be separate from or part of the medical team, their understanding of the role of the chaplain, and their experience of solicited versus unsolicited interactions with hospital chaplains. We hypothesized that most families view a chaplain's visit as supportive, but those without religious affiliation might find it intrusive, and some might find it frightening if perceived as associated with end-of-life care. The goal of this research is to help guide the hospital chaplain practice as it relates to children and families.

Methods

Parents who were visited by a hospital chaplain in 2013 during their child's hospitalization at our tertiary care hospital were eligible for the survey study. Eligible parents were identified by linking a list of patients visited by hospital staff chaplains, including Clinical Pastoral Education residents and interns, with hospital admission records. Parents were sent a letter explaining the study and asking permission to contact them by telephone about study participation. An opt-out postcard allowed parents to decline further contact. Parents who did not opt-out were contacted for verbal consent and telephone interview. The Institutional Review Board approved the study.

The survey instrument was developed by the investigators and consisted of 40 questions with Likert, yes/no, and short-answer responses. Questions concerning specific chaplain interventions were adapted from Flannelly et al. ²¹ The survey targeted parents' perception of hospital chaplain visits including provision of spiritual/religious and psychosocial support, integration into the healthcare team, and feelings about unsolicited visits that were initiated by the chaplain without prior request. The survey was piloted with members of the Department of Spiritual Care and Chaplaincy and four parents of children currently hospitalized for authenticity and clarity. Adjustments were made based on feedback on the pilot survey. Interviewers (J.S., K.F., and C.P.) were trained with the instrument and have experience interacting with parents of children in the context of acute and intensive care. Any parent considered by the interviewer to be distressed by the survey was referred, with permission, to a hospital social worker for evaluation and referral to mental health services if warranted.

Descriptive statistics were used to characterize the sample. Parents who identified that their spiritual/religious values always/usually guide the way they live (deemed religious) were compared, by nonparametric methods for categorical and continuous variables, with those who indicated that spiritual/religious values never/sometimes guide their lives or that they have no religious tradition that they follow (deemed nonreligious). A multiple logistic regression model was built to identify independent predictors of a chaplain visit positively influencing satisfaction with hospital care (a lot/some = 1, none = 0). Parent responses to the final question “Is there anything else you want us to know about hospital chaplains?” were categorized and counted. IBM SPSS 24 was used for statistical analyses.

Results

Two hundred fifty-seven families visited by a hospital chaplain had current addresses or working telephone numbers at the time of the study; parents of 74 (29%) children were interviewed. Of those not interviewed, 21 opted out, and three declined participation after telephone contact; the remainder did not answer several attempts to reach them by phone or return voice mail messages.

Demographic data for survey respondents and the hospitalized child are shown in Table 1. All respondents reported that they were the primary person with the child during the hospitalization. The majority of respondents considered themselves a spiritual/religious person and reported that their spiritual/religious values always guide the way they live. Eighty-one percent of respondents were visited more than once by the hospital chaplain. Nearly three-quarters of respondents considered their child very sick during the hospitalization.

About half of the parents (59.6%) knew a hospital chaplain was available to them; 42.3% of parents requested a chaplain visit. Sixty-two percent of parents understood that the role of a hospital chaplain included providing religious and secular services: prayer and sacraments, family support, and comfort. The remaining 38% of parents reported that chaplains help patients/parents with decision making, medical terminology, advocacy, and by just being there.

Among the 57.7% of parents who had unsolicited chaplain visits, 26% reported that a staff member suggested and arranged the visit (the staff member was usually a nurse, 73%). More than half (54%) of the respondents receiving an unsolicited visit reported being grateful and appreciative of the sincerity and caring behavior demonstrated to the whole family. Only five respondents would have preferred giving prior approval before the chaplain visit. For three of these respondents, the unsolicited visit was viewed as surprising, awkward, or frightening. Two parents reported that they feared the staff called the chaplain because bad news was going to be delivered or that doctors had been withholding information about the seriousness of the child's condition. In all five of these cases, respondents reported that once they understood the purpose of the chaplain's visit, they appreciated the support and welcomed additional visits.

Table 2 indicates how parents perceive the relationship between chaplains and the healthcare team. About 75% of parents agreed with the statement, “during the hospital stay, I viewed the chaplain as part of my child's health care team,” and 38% reported that chaplains helped healthcare providers understand parents' preferences for care at least some of the time. Just over half of the parents reported some conflict or tension with the healthcare team; for 21.6% of these parents, a chaplain helped resolve the conflict.

The frequency of interventions performed by chaplains and parents' perceptions of chaplain empathy are shown in Table 3. Almost all parents felt the chaplain provided emotional support (87%) and caring (95%).

For the majority of parents, hospital chaplains helped meet their religious/spiritual needs, reduced stress, and helped them maintain hope throughout their child's hospitalization, Table 4. Two-thirds of parents reported that hospital chaplaincy positively influenced their satisfaction with overall hospital care. None of the child or parent demographic variables or the number of chaplain visits were independent predictors of a chaplain visit influencing satisfaction with hospital care in a regression model (data not shown, but available).

When asked what else they wanted to tell us about hospital chaplains, 50 parents responded. Illustrative quotations are presented for each category of response. Numbers after quotes are participant's unique identifiers.

The majority of parents (38/50, 76%) felt the chaplain services were beneficial to the family:

Six percent of parents (3/50) were uninformed of the availability of a chaplain:

A few parents (3/50, 6%) did not feel adequate spiritual care was available:

Some parents (6/50, 12%) took the opportunity to comment on other hospital services:

An analysis of religious parents compared with nonreligious parents revealed few differences with regard to perception of hospital chaplains, Table 5. When asked if there were any additional comments they wanted to make, nonreligious respondents were overwhelmingly positive about the role of the hospital chaplain:

Discussion

Hospital chaplains are described as working on the margins of medicine ²² or between the worlds of doctors and patients, ²³ with little data to support the efficacy of their work. ²⁴ In this study, we quantify satisfaction with the day-to-day routine care provided by hospital chaplains from the viewpoint of recipients of that care, the families of hospitalized children. Most families viewed a chaplain visit, whether solicited or not, as a positive and helpful component of the care provided during a child's hospitalization. This was true of religious/spiritual parents and those who did not identify themselves as religious or spiritual. Remarkably, 66% of parents reported that as few as one or two visits from a hospital chaplain positively influenced their satisfaction with hospital care.

Our findings are consistent with a systematic review that indicates that providing for patients' emotional and spiritual needs is highly correlated with satisfaction with the hospital experience. ²⁵ Most parents in our study reported feeling personally cared for by hospital chaplains and that chaplains provide families with what one parent described as much-needed respite from medical talk by focusing on parent well-being. Piderman ²⁶ and others ²⁷ have shown that adult patients find a chaplain visit particularly important during times of anxiety or uncertainty. These emotional states may apply to our sample as many parents experienced an intensive care hospitalization with their child. As in our study, research with adult patients has documented that religiousness plays little part in the benefit patients perceive from a chaplain visit. ²⁸

Caregivers of children with chronic conditions, such as HIV, ²⁹ bronchopulmonary dysplasia, ³⁰ and disabilities such as autism,^31,32 use prayer as a coping mechanism. In our inpatient study, prayer was a frequently used intervention by chaplains (for 82% of parents) and may have helped parents cope with childhood illness or injury. Data from both inpatient and outpatient samples illustrate the benefit of supporting a family's spiritual coping strategies around childhood illness.

Hospital chaplains increasingly provide for more than the explicit religious/spiritual needs of patients and families (prayers, religious ritual); they also address implicit needs such as values clarification or the search for meaning in illness.^27,33 In our study, more than 50% of parents reported that hospital chaplains helped them explore the meaning of their child's illness, and more than 80% reported that chaplains helped them maintain hope during the hospitalization. Families and pediatricians acknowledge hope as an important strategy in coping with serious childhood illness. ³⁴ Hospital chaplains are specifically trained to support and guide individuals as they explore existential questions and so are the logical team members to provide this service. ³³ Physicians may be less likely to avoid asking about these important topics if there is a chaplain available to devote time to parents as they explore these issues.

Half of the parents in our study experienced conflict with the healthcare team, a similar percentage as reported by others. ³⁵ We did not ask the nature of this conflict, but disagreement concerning the benefit of continued medical interventions is a known source of conflict between families and physicians. ³⁶ Inexpert communication during difficult conversations can also lead to conflict^35,37 and has prompted medical schools and professional organizations to increase communication training.^38–40 In our study, chaplains assisted in resolving interpersonal conflict for 25% of parents who reported discord with providers; others have reported that adult patients value a chaplain's assistance with communicating with physicians. ²⁷ As a neutral and respected professional, chaplains can serve as valuable mediators when conflict arises.

Three-quarters of parents in our study felt the chaplain was part of their child's healthcare team at least some of the time. This perception is different from that reported by healthcare providers. ²⁷ Chaplains in our pediatric hospital are a visible presence, particularly in the ICUs; they routinely attend family meetings and participate in rounds. Participation in these activities may increase parents' perception that chaplains are part of the medical team. Physicians and nurses also utilize hospital chaplains for staff debriefings, support, and counseling during times of high moral distress, increasing their familiarity with chaplains, which they openly display to parents. There are differing opinions as to whether chaplains are, or should be, part of the medical team.^41–43 Physicians may utilize chaplains more frequently if they are perceived as members of the medical team, but their role as patient advocates could be diminished. As a bona fide member of the medical team, patients and families may view chaplains as representing the medical system or hospital, which could adversely affect trust for some. Chaplains' vision of themselves as apart may also facilitate their effectiveness in mediating physician–family conflict, which could be lost if they are an integrated member of the team.

Our study has limitations. Only 29% of parents who were located could be contacted and participated in the study; their views may not be representative of all parents of hospitalized children. We do not know if parents who opted out of the study had unsolicited chaplain visits. The prolonged hospitalization of many of the children in our sample and the perceived seriousness of their condition may have influenced parents' appreciation of hospital chaplains; about 80% of the children in our sample spent some time in intensive care, legitimizing parents' perception of illness severity. Because the acuity in our hospital is high, and our chaplain staffing low, chaplains are preferentially staffed to respond to emergencies and cover ICU admission and so may be more available to these parents than to parents of children hospitalized on the general medical–surgical floors. Prolonged hospitalization may have contributed to the high proportion of parents who reported conflict with the healthcare team. Information from hospitalized children on their perception of the role of the hospital chaplain is missing from our study. Most of our respondents were mothers; fathers' views may differ. Although 90.5% of our sample identified themselves as religious, the proportion is not appreciatively different from the 89% of a representative sample of Americans who reported they believe in God. ¹

A primary tenet of pediatric patient- and family-centered care is the acknowledgement that families play a fundamental role in the health of children. Hospital chaplains honor the responsibility and role parents play in their child's recovery by providing them with the psychosocial and spiritual support they need during a hospitalization. Our study highlights the important role chaplains play in the overall well-being of the family through a routine presence, support, counseling, and conflict mediation. Chaplains contribute to the quality of day-to-day care of the religious and nonreligious families of hospitalized children and positively influence satisfaction with hospital care.