Investigation of modifiable variables to increase hospice nurse comfort with care provision to children and families in the community: A population-level study across Tennessee, Mississippi, and Arkansas

Abstract

Context:

Most hospice nurses across Tennessee, Arkansas, and Mississippi report significant discomfort with provision of pediatric palliative and hospice care (PPHC). How best to target and modify variables to increase nurse comfort levels is not well understood.

Objective:

To determine whether modifiable variables are associated with increased hospice nurse comfort with PPHC provision in the community.

Methods:

A cross-sectional survey was developed, pilot-tested, and distributed to hospice nurses across a tristate region to assess nurse training experiences and comfort with PPHC provision. Targeted sub-analyses were conducted to investigate associations between nurse comfort level and clinical, training, and patient frequency variables.

Results:

A total of 551 respondents representing 71 hospices across Tennessee, Arkansas, and Mississippi completed surveys. Hospice nurse comfort with provision of care to children was statistically significantly associated with exposure to prior PPHC clinical experiences (p<0.001), receipt of formal pediatric PPHC training (p<0.001), and higher hospice- (p=0.01) and individual-level frequency of PPHC provision (p<0.001). PPHC clinical experience was the most impactful variable with respect to comfort with overall and end-of-life PPHC provision; formal training was the most impactful variable with respect to comfort with management of severe symptoms at the end of life.

Conclusion:

Modifiable variables exist that are readily targetable to improve hospice nurse comfort with PPHC provision. These findings should inform the development and investigation of clinical and educational interventions to empower both nurses and hospices to optimize the provision of quality care to children with serious illness and their families in the community.

Introduction

Each year, approximately 50,000 children in the United States (U.S.) die from serious illness.¹ The Institute of Medicine and the American Academy of Pediatrics strongly endorse the integration of palliative and hospice care for children with life-limiting illness,^2–4 and growing numbers of parents express a preference for their child to receive end-of-life care in the home.^5–8 However, only 1 in 10 eligible children currently receive hospice services;⁹ while more than three-quarters of hospices offer services to pediatric patients, fewer than 1 in 5 hospice programs in the U.S. offer pediatric palliative and hospice care (PPHC) provided by specialized or trained staff.¹⁰ In the absence of accessible pediatric programs, children with serious illnesses typically receive care from adult organizations, most of which have negligible experience with provision of pediatric care.¹⁰ This stop-gap system places highly vulnerable children and families at risk of receiving services from clinicians with inadequate experience and comfort with provision of PPHC in the community.

Within the U.S., the tristate region of Tennessee, Arkansas, and Mississippi falls within the lowest quartile of states with respect to hospice access,¹¹ while also serving as a large catchment area for children with serious illness referred from numerous large pediatric academic centers. Prior population-level research, in collaboration with tristate hospice organizations that might be called upon to provide care to pediatric patients, revealed that the majority of hospice nurses across Tennessee, Arkansas, and Mississippi have limited clinical experience providing PPHC to patients, lack formal PPHC training, and feel uncomfortable providing PPHC to children and families in the community.^12,13

Data demonstrate that provision of PPHC, particularly at the end of life, is one of the most sensitive and stressful responsibilities that a clinician can undertake.^14,15 Specifically, nurses endorse feeling significant pressure to provide high quality care at the end of a child’s life (i.e., “you’ve only got one chance to get it right.”)^14,16 In this context, hospice nurses are at risk for burnout, which in turn adversely impacts quality of care and job retention.¹⁷ No prior studies have investigated whether modifiable variables may be associated with nurse perception of comfort in provision of high quality PPHC to children and families in the community. To address this deficit, we conducted targeted analysis of population-level survey data from hospice nurses employed by all accredited hospice organizations across Tennessee, Arkansas, and Mississippi, with the goal of identifying potential factors that impact hospice nurse comfort with provision of optimal community-based care to pediatric patients.

Methods

The authors’ Institutional Review Board reviewed and approved this study. Detailed methodology regarding tristate-specific hospice identification, eligibility criteria, recruitment, and enrollment procedures have been previously described.^12,13 Briefly, a collaboration with Hospice Analytics was facilitated to interrogate the National Hospice Locator and aggregate a roster of all accredited hospice organizations in the tristate region of Tennessee, Arkansas, and Mississippi. This list was cross-checked with rosters derived from the Tennessee Hospice Organization, Arkansas Department of Health, Hospice and Palliative Care Organization of Arkansas, and the Louisiana-Mississippi Hospice and Palliative Care Organization. Hospice organizations were eligible to participate in the study if they offered palliative care and/or hospice services to patients in Tennessee, Mississippi, and Arkansas, and if they employed nurses who could be asked to provide care to a pediatric patient if a need arose within their catchment area; hospices that had a policy precluding provision of care to patients under the age of 18 were ineligible. All hospice nurses employed by a participating organization were eligible to complete the survey if their job description included possible provision of palliative or hospice care to pediatric patients and their families. Pre-screened state-specific hospices were contacted by telephone to review eligibility and offer enrollment. A member of hospice leadership (i.e., medical director, nursing director, or program coordinator) was appointed as on-site study facilitator, and this individual distributed an electronic survey to all eligible nurses at the participating site and confirmed the total number of nurses who received the survey. Paper surveys were provided at several sites by request.

Detailed methodology regarding survey development procedures, item content, and validation processes have also been previously described.^12,13 In summary, an expert interdisciplinary team of clinicians and researchers reviewed the literature related to barriers to provision of PPHC to children in the community.^{18,19,28,29,20–27} In collaboration with key community stakeholders, items were created and iteratively revised following multiple rounds of pilot testing to enhance face and content validity. The final survey comprised items to ascertain current status and extent of provision of PPHC services to children and families in the community, as well as items to evaluate levels of prior training, experiences, and self-perceived comfort across the following domains: pain control, non-pain symptom management, communication around goals of care and advance directives, end of life management, bereavement support, and debriefing experiences. Receipt of formal PPHC training was self-reported by participants based on their interpretation of whether prior educational experiences qualified as formal PPHC training; types of training were not quantified, but participants were encouraged to provide free-text responses to describe PPHC training experiences for subsequent qualitative analysis.

The goal of this targeted sub-analysis was to investigate potential associations between hospice nurse self-reported levels of comfort with overall provision of PPHC and provision of care at the end of life with those variables elicited in the survey hypothesized to be related to nurse comfort with pediatric-specific care provision: nurses’ prior clinical experiences with PPHC, receipt of formal PPHC training, duration of career as a hospice nurse, and frequency of exposure to pediatric patients as queried via hospice-and individual-level metrics.

Statistical Analysis

Respondent demographics, hospice demographics, and hospice nurse experience and comfort levels with provision of care to pediatric patients have been previously published.^12,13 Categorical variables were summarized by descriptive statistics (counts and percentages). Associations between comfort with overall and end-of-life PPHC provision and potential impact variables were assessed with Fisher’s exact test or Cochran-Armitage trend exact test. Logistic regression was utilized to calculate the odds ratios and conduct the subsequent inference. A multiple logistic model was used to determine the most impactful variable on nurse self-reported comfort with overall PPHC provision, end-of-life care, and management of severe symptoms. A two-sided significance level of P<0.05 was used for all statistical tests. All statistical analyses were conducted using SAS 9.4 (SAS Institute, Cary, NC).

Results

Ninety-one accredited hospices were identified in Tennessee, Arkansas, and Mississippi, and 71 hospices opted to participate in this study (78% enrollment). A total of 551 hospice nurses from participating hospices completed surveys. Hospice and individual respondent demographics have been published previously;^12,13 Table 1 presents the salient variables. What constitutes formal PPHC training, as described by nurse participants who provided free-text responses in this survey, has also been published previously.¹³

Table 1.

Respondent and Hospice Demographics (N=551)

Respondent Demographics	N (%)	Hospice Demographics	N (%)
Gender		Location of hospice agency
Female	476 (86.4%)	Tennessee	184 (33.4%)
Male	33 (6%)	Arkansas	181 (32.8%)
Missing	42 (7.6%)	Mississippi	144 (26.1%)
Race		Other	4 (0.7%)
White	470 (85.3%)	Missing	38 (6.9%)
		Number of nurses on staff at
Black	24 (4.4%)	each hospice
Asian/Pacific Islander	2 (0.4%)	1–9	208 (37.7%)
Arabic/Middle Eastern	0 (0%)	10–19	150 (27.2%)
Native American Indian/Alaskan Native	4 (0.7%)	20–29	46 (8.3%)
Other	9 (1.6%)	30 or more	107 (19.4%)
Missing	42 (7.6%)	Missing	40 (7.3%)
Ethnicity		Number of children per year served by each hospice
Hispanic	4 (0.7%)	0–4	406 (73.7%)
Non-Hispanic	502 (91.1%)	5–9	51 (9.3%)
Missing	45 (8.2%)	10–19	18 (3.3%)
Age		20–29	10 (1.8%)
</=19 years	0 (0%)	>30	24 (4.4%)
20–29 years	40 (7.3%)	Missing	42 (7.6%)
30–39 years	121 (22%)
40–49 years	143 (26%)
50–59 years	141 (25.6%)
>/=60 years	64 (11.6%)
Missing	42 (7.6%)
Years as a hospice nurse
<1 year	97 (17.6%)
1 −4 years	199 (36.1%)
25–9 years	148 (26.9%)
10–19 years	93 (16.9%)
>/=20 years	13 (2.4%)
Missing	1 (0.2%)
Any prior experience providing palliative or
hospice care to an infant, child, or
adolescent patient
Yes	279 (50.6%)
No	272 (49.4%)
Any prior training in pediatric palliative
care or pediatric hospice
Yes	56 (10.2%)
No	495 (89.8%)

Associations between nurse-reported comfort with PPHC provision and potentially modifiable variables (e.g., prior clinical experience, formal training, and annual hospice enrollment of pediatric patients) are presented in Table 2. Specifically, nurse comfort with overall provision of PPHC and provision of care to children at the end of life including management of severe symptoms was statistically significantly associated with having prior PPHC clinical experiences (p<0.001), receipt of formal PPHC training (p<0.001), and employment in a hospice with higher annual enrollment of pediatric patients (p=0.01, p=0.002, p<0.001, p<0.001, respectively).

Table 2.

Association between Nurse-reported Comfort with Provision of Pediatric Care and Potentially Modifiable Variables.

Survey Items	Prior PPHC Clinical Experience (N=551)			Formal PPHC Training (N=551)			Pediatric Hospice Enrollments Annually (N=551)
	Yes (N=279)	No (N=272)	pa	Yes (N=56)	No (N=495)	pa	0–4 (N=406)	5–19 (N=69)	20 and more (N=34)	pb
How comfortable do you feel…c
Providing palliative care or hospice services to children?	166 (59.5%)	107  (39.3%)	<.001	39 (69.6%)	234 (47.3%)	<.001	201 (49.5%)	41 (59.4%)	24 (70.6%)	0.010
Providing care to children who are actively dying?	158 (56.6%)	109  (40.1%)	<.001	39 (69.6%)	228 (46.1%)	<.001	197 (48.5%)	43 (62.3%)	24 (70.6%)	0.002
Taking care of children with severe pain at the end of life?	157 (56.3%)	100  (36.8%)	<.001	41 (73.2%)	216 (43.6%)	<.001	188 (46.3%)	45 (65.2%)	22 (64.7%)	<.001
Taking care of children with severe dyspnea at the end of life?	160 (57.3%)	101  (37.1%)	<.001	41 (73.2%)	220 (44.4%)	<.001	189 (46.6%)	46 (66.7%)	24 (70.6%)	<.001

Abbreviations: PPHC, pediatric palliative and hospice care; P, P value.

^aFisher’s exact test. Missing values have been excluded when P values are calculated.

^bCochran-Armitage trend exact test. Missing values have been excluded when P values are calculated.

^cSurvey item choices “Very comfortable” and “Somewhat comfortable” were recategorized as “Comfortable;” “Somewhat uncomfortable” and “Very uncomfortable” were recategorized as “Uncomfortable.” Only the counts and percentages of “Comfortable” were reported in the table.

Odds ratios of nurse-reported comfort given variable exposure are presented in Table 3. Nurses with prior PPHC clinical experience had more than twice the odds of reporting comfort with overall and end-of-life PPHC provision including management of severe symptoms compared with nurses lacking PPHC clinical experience [overall PPHC – OR: 2.674 (1.881 ~ 3.800), p<0.001; end-of-life PPHC – OR: 2.276 (1.604 ~ 3.229), p<0.001; refer to Table 3 for symptom-specific comfort ORs]. Nurses who received formal PPHC training had 2–4 times the odds of reporting comfort across all metrics compared with those who lacked formal PPHC training [overall PPHC – OR: 2.881(1.524 ~ 5.445), p<0.001; end-of-life PPHC – OR: 2.969 (1.571 ~ 5.613), p<0.001); refer to Table 3 for symptom-specific comfort ORs]. Nurses employed by hospices that enroll 20 or more pediatric patients annually had more than twice the odds of reporting comfort across all metrics compared to nurses employed by hospices enrolling 4 or fewer pediatric patients annually [overall PPHC – OR: 2.447(1.141 ~ 5.246), p=0.022; end-of-life PPHC – OR: 2.545 (1.187 ~ 5.457), p=0.016); refer to Table 3 for symptom-specific comfort ORs]. In hospices with annual enrollment of 5–19 pediatric patients, nurses also had statistically higher odds of reporting comfort with end-of-life PPHC provision and severe symptom management, compared to nurses employed by hospices enrolling fewer than 4 pediatric patients per year [refer to Table 3 for details].

Table 3.

Logistic Regression for Comfort with Pediatric Palliative and Hospice Care Provision with Exposure to Potentially Modifiable Variables

Survey Items		Prior PPHC Clinical Experience		Formal PPHC Training			Pediatric Hospice Enrollments Annually
	Group	Odds Ratio (Cl)	P	Odds Ratio (Cl)	P	Count	Odds Ratio (Cl)	P
How comfortable do you feel…  Providing palliative care or hospice services to children?	Yes No	2.674 (1.881 ~ 3.800) Reference	<.001	2.881 (1.524 ~ 5.445) Reference	0.001	>/=20 5–19 0–4	2.447 (1.141 ~ 5.246) 1.493 (0.889 ~ 2.508) Reference	0.022 0.129
Providing care to children who are actively dying?	Yes No	2.276 (1.604 ~ 3.229) Reference	<.001	2.969 (1.571 ~ 5.613) Reference	<.001	>/=20 5–19 0–4	2.545 (1.187 ~ 5.457) 1.755 (1.039 ~ 2.964) Reference	0.016 0.036
Taking care of children with severe pain at the end of life?	Yes No	2.606 (1.831 ~ 3.709) Reference	<.001	4.018 (2.059 ~ 7.839) Reference	<.001	>/=20 5–19 0–4	2.116 (1.020 ~ 4.391) 2.164 (1.271 ~ 3.686) Reference	0.044 0.005
Taking care of children with severe dyspnea at the end of life?	Yes No	2.667 (1.874 ~ 3.796) Reference	<.001	3.898 (1.998 ~ 7.605) Reference	<.001	>/=20 5–19 0–4	2.754 (1.284 ~ 5.907) 2.296 (1.342 ~ 3.929) Reference	0.009 0.002

Abbreviations: PPHC, pediatric palliative and hospice care; CI, confidence interval; P, P value.

Associations between nurse-reported comfort with PPHC provision and individual working variables (e.g., duration of hospice career, frequency of taking individual assignments with pediatric patients) are presented in Table 4. Duration of career as a hospice nurse was not statistically significantly associated with overall comfort with provision of PPHC nor with provision of end-of-life care including symptom management. Comfort with overall PPHC provision and end-of-life care was statistically significantly associated with individual provider frequency of interacting with pediatric patients (p<0.001, p=0.008, p=0.002, p<0.001, respectively). Odds ratios for nurse-reported comfort based on individual frequency of PPHC care provision are presented in Table 5. Nurses who interacted with pediatric patients daily or several times per week had 6.5 times the odds of reporting comfort with overall PPHC provision (p=0.003). Nurses who self-reported providing care to pediatric patients “Several times a month/Several times a year” had statistically significantly higher odds of feeling comfortable compared with nurses who reported a frequency of “every couple of years/never,” across all PPHC provision variables [refer to Table 5 for details]. No significant differences were seen in the odds of comfort specifically with end-of-life care provision between nurses who self-reported “daily/several times a week” and “every couple of years/Never.”

Table 4.

Association between Comfort with Provision of Pediatric Care and Individual Working Variables.

	Years Employed as Hospice Nurse (N=551)				Frequency of Palliative Care or Hospice Provision to Pediatric Patients (N=279)
Survey Items	Less than 5 years (N=296)	5–9 years (N=148)	10 years and more (N=106)	Pa	Daily/ Several times a week (N=27)	Several times a month/ Several times a year (N=80)	Every couple of years/ Never (N=171)	Pa
How comfortable do you feel…b
Providing palliative care or hospice services to children?
	150 (50.7%)	73 (49.3%)	49 (46.2%)	0.738	21 (77.8%)	61 (76.3%)	84 (49.1%)	<.001
Providing care to children who are actively dying?
	136 (45.9%)	75 (50.7%)	55 (51.9%)	0.116	15 (55.6%)	57 (71.3%)	86 (50.3%)	0.008
Taking care of children with severe pain at the end of life?
	134 (45.3%)	75 (50.7%)	47 (44.3%)	0.573	16 (59.3%)	57 (71.3%)	84 (49.1%)	0.002
Taking care of children with severe dyspnea at the end of life?
	136 (45.9%)	75 (50.7%)	49 (46.2%)	0.537	17 (63%)	58 (72.5%)	85 (49.7%)	<.001

Abbreviations: P, P value.

^aCochran-Armitage Trend Exact Test. Missing values were excluded when calculated P values.

^bSurvey item choices “Very comfortable” and “Somewhat comfortable” were recategorized as “Comfortable;” “Somewhat uncomfortable” and “Very uncomfortable” were recategorized as “Uncomfortable.” Only the counts and percentages of “Comfortable” were reported in the table.

Table 5.

Logistic Regression for Comfort with Pediatric Palliative and Hospice Care Provision with Exposure to Individual Working Variables

Survey Items	How often do you provide palliative care or hospice services to infants, children, or adolescents? (N=279)
	Frequency	Odds Ratio (CI)	P
How comfortable do you feel…
	Daily/Several times a week	6.502 (1.867 ~ 22.641)	0.003
Providing palliative care or hospice services to children?	Several times a month/ Several times a year	4.361 (2.226 ~ 8.544)	<.001
	Every couple of years/Never	Reference
	Daily/Several times a week	1.598 (0.642 ~ 3.977)	0.314
Providing care to children who are actively dying?	Several times a month/ Several times a year	2.858 (1.533 ~ 5.329)	0.001
	Every couple of years/Never	Reference
	Daily/Several times a week	2.020 (0.789 ~ 5.172)	0.143
Taking care of children with severe pain at the end of life?	Several times a month/ Several times a year	2.963 (1.589 ~ 5.527)	<.001
	Every couple of years/Never	Reference
	Daily/Several times a week	2.537 (0.952 ~ 6.761)	0.063
Taking care of children with severe dyspnea at the end of life?	Several times a month/ Several times a year	3.246 (1.723 ~ 6.113)	<.001
	Every couple of years/Never	Reference

Abbreviations: CI, confidence interval; P, P value.

A multiple logistic model was used to adjust the impact of potentially modifiable variables and assess the joint influence of these factors on comfort with PPHC provision (Table 6). Having PPHC clinical experience was the most impactful factor with respect to comfort with overall and end-of-life PPHC provision; formal training was the most impactful factor with respect to comfort with management of severe pain or severe dyspnea in children at the end of life.

Table 6.

Comparing the Relative Impact of Potentially Modifiable Variables on Nurse Reported Comfort with Pediatric Palliative and Hospice Care Provision

Survey Item	Group/Count	Estimate	SD	P
How comfortable do you feel…
Providing palliative care or hospice services to children?
Prior clinical experience	Yes No	0.86 reference	0.19	<.001
Formal training	Yes No	0.59 reference	0.37	0.114
	20 or more	0.37	0.44	0.395
Pediatric hospice enrollments annually	5–19	0.09	0.28	0.753
	0–4	reference
Providing care to children who are actively dying?
Prior clinical experience	Yes No	0.67 reference	0.19	<.001
Formal training	Yes No	0.59 reference	0.37	0.107
	20 or more	0.46	0.44	0.297
Pediatric hospice enrollments annually	5–19	0.30	0.28	0.286
	0–4	reference
Taking care of children with severe pain at the end of life?
Prior clinical experience	Yes No	0.80 reference	0.19	<.001
Formal training	Yes No	1.14 reference	0.40	0.004
	20 or more	−0.04	0.44	0.926
Pediatric hospice enrollments annually	5–19	0.42	0.29	0.147
	0–4	reference
Taking care of children with severe dyspnea at the end of life?
Prior clinical experience	Yes No	0.81 reference	0.19	<.001
Formal training	Yes No	0.96 reference	0.40	0.016
Pediatric hospice enrollments annually	20 or more 5–19	0.34 0.50	0.45 0.29	0.448 0.083
	0–4	reference

Abbreviations: SD, Standard Deviation; P, P value.

Discussion

Hospice nurses across the tristate region of Tennessee, Arkansas, and Mississippi express a nearly unanimous and profound lack of comfort with respect to provision of PPHC.¹² This study identifies several variables associated with increased nurse comfort levels, including several potentially modifiable factors: prior PPHC clinical experiences, receipt of formal PPHC training, and hospice willingness to enroll pediatric patients. The findings presented in this sub-analysis suggest that it may be feasible to improve nurse comfort with PPHC provision, including end-of-life care and management of severe symptoms, through targeted modulation of these variables.

Specifically, when nurses had prior PPHC clinical experiences, they were more than twice as likely to report comfort with overall PPHC provision and end-of-life care, including management of severe symptoms. These data are important for guiding educational initiatives and policies to support and promote pediatric clinical experiences for hospice nurses. Nursing training values clinical shadowing opportunities as an essential pillar of education; yet many hospice nurses continue to report a lack of pediatric-specific clinical experiences.¹² We advocate for the creation of partnerships between community hospices and pediatric centers with subspecialty experts formally trained in PPHC to help facilitate pediatric shadowing experiences for community-based hospice nurses. Interdisciplinary learning environments (inclusive of hospice and palliative medicine fellows and psychosocial providers) may contribute additional richness to these clinical learning opportunities. To facilitate these unique learning opportunities, collaborative partnerships between the Accreditation Council for Graduate Medical Education, the American Academy of Hospice and Palliative Medicine, the Hospice and Palliative Nurses Association, the National Hospice and Palliative Care Organization, and the Center to Advance Palliative Care are encouraged, with an eye towards optimizing curricula to meet the needs and goals of diverse learners.

Access to PPHC training comprises an additional low-hanging fruit with respect to its modifiability and potential for high-yield impact. Within this tristate population, nurses with prior formal PPHC training were 2–4 times more likely to report comfort across overall and end-of-life PPHC metrics. These findings provide further impetus for the development and investigation of educational resources and training interventions to better prepare and support hospice nurses in the provision of care to children and families in the community. Recent work by Weaver et al affirm this mission, demonstrating that PPHC educational interventions offered to hospice nurses in Nebraska increased self-reported levels of confidence in caring for children.³⁰ Nurse buy-in does not appear to be a rate-limiting factor in efforts towards modifying the PPHC training variable, with hospice nurses expressing a strong desire for increased pediatric-specific training.¹³ In response to these nurse-identified needs, the national Hospice and Palliative Nurses Association recently recognized PPHC as a key priority within their 2019–2022 Research Agenda.³¹

Fortunately, hospice nurses have enumerated their specific PPHC training and educational resources across multiple domains, including assessment and management of pain and other symptoms, appropriate use of pharmacotherapeutic interventions, communication across the progressing illness trajectory, and assessment and management of psychosocial concerns.¹³ The End-of-Life Nursing Education Consortium (ELNEC) or Pediatric ELNEC (ELNEC-P) program comprises a standardized two-day educational curriculum, often taught to interdisciplinary audiences. A primary goal of ELNEC-P centers on enhancing nursing comfort and experience with PPHC,³² and therefore it offers a promising foundation upon which to build further PPHC education. Importantly, recent evidence also suggests that hospice nurses may benefit from educational curricula tailored to meet the geographic and sociocultural needs of a given region.³⁰ Precedent exists for regional PPHC educational programs, with respect to both feasibility, acceptability, and sustainability.³³ With this in mind, efforts currently are underway to develop and investigate the effectiveness of PPHC didactic and training resources through collaborations between the Hospice and Palliative Nurses Association and the Center to Advance Palliative Care.

Identified associations between hospice-and individual-level frequency of PPHC provision with nurse comfort, while not surprising, are particularly important to consider. Prior research suggests that hospice nurse comfort with PPHC provision may positively influence hospice willingness to enroll pediatric patients and nurse willingness to provide care for children and families in the community.³⁰ Our findings demonstrate a potential positive feedback cycle: heightened nurse comfort yields increased hospice enrollment of pediatric patients, and increased pediatric enrollment at the hospice-level yields increased nurse comfort with PPHC provision.

Currently, the converse is true: hospices infrequently provide care to pediatric patients, resulting in heightened discomfort with PPHC provision. This engenders a negative feedback cycle: hospices that historically care rarely for pediatric patients yield hospice nurses that lack comfort with PPHC provision, and in turn many of these hospices implement policies that preclude enrollment of eligible pediatric patients within their catchment area.¹² This cycle can be broken, however, with educational interventions that promote nurse confidence, subsequently translating into greater willingness for hospice organizations to enroll pediatric patients.³⁰ Thus, a positive feedback cycle can be nurtured: more hospice organizations enroll pediatric patients, leading to increasing nurse comfort, leading to greater enrollment.

Additionally, prior research suggests that clinicians who care for children with serious illness are at high risk for experiencing moral distress and burnout.^34,35 Hospice nurses, in particular, represent a vulnerable population, especially if they lack training in and comfort with provision of palliative and hospice care to children.^14,15,36 In the face of stressors inherent to pediatric-specific care, hospice nurses may struggle with job satisfaction and retention related to burnout.³⁷ Further research is needed to explore whether improved access to PPHC resources, training, and mentorship might mitigate stressors and associated burnout.

For hospices that typically enroll few pediatric patients, another strategy to promote nurse comfort and confidence is investment in the designation of PPHC nurse champions within a given organization. Depending on staffing needs, these nurses likely would not be assigned exclusively to provide care to pediatric patients; however, they could serve as a resource for others within the hospice, boosting a collective sense of individual comfort and organizational willingness to enroll pediatric patients. The concept of a pediatric-specific palliative care champion has been proposed within other facets of pediatric care;³⁸ further research is needed to explore its feasibility and efficacy within the PPHC setting.

Interestingly, when assessing the modifiable variable most likely to increase comfort with PPHC, clinical experience and formal training were shown to be most impactful with respect to overall and end-of-life PPHC provision and management of severe symptoms, respectively. These findings provide a tangible basis for a call to action to improve access to PPHC clinical shadowing experiences, experiential learning, and formal training resources and programs to better support hospice nurses in the care of children with serious illness and their families.

Also important to note is the lack of association between duration of career as a hospice nurse and nurse perception of overall comfort with provision of PPHC and end-of-life care including symptom management. These findings remind us that one should not assume that a nurse with years of hospice experience feels comfortable with PPHC provision; conversely, one should not discount the comfort level of an early-career hospice nurse empowered by pediatric-specific resources, training, and mentorship.

Lastly, nurses who interacted with pediatric patients at least several times per week were more than 6 times as likely to feel comfortable with overall PPHC provision, and trends towards significance were seen regarding comfort with end-of-life care provision including management of severe symptoms. However, statistical significance was not present across all levels of frequency, and further investigation is needed to ascertain the nature of associations between individual frequency of pediatric care provision and resulting comfort with PPHC.

This study has several limitations. First, it represents the experience of a tristate region which is not necessarily generalizable across all states. Second, this study achieved high levels of hospice organization and nurse participation, but it is not feasible to quantify the impact of data from missing sites or individuals, respectively. Third, associative findings are not causal; additional investigation is needed to identify factors and interventions that directly yield outcome metrics of interest. Fourth, survey design utilized Likert scales as opposed to free-text entry of continuous variables, such that it was not possible to distinguish retroactively between the experiences of nurses employed by agencies that provide PPHC annually to 0 vs. 4 patients; it is possible that nurses at hospice organizations that lack historical experience with PPHC provision might demonstrate even greater levels of discomfort than those employed by agencies that provide PPHC to a couple of patients per year. Fifth, this study did not parse out distinctions across the wide spectrum of pediatrics; it remains possible that some nurses may feel more comfortable with provision of care to late-adolescent patients as compared to infants or younger children.

In summary, hospice nurses in the community are more likely to report comfort with providing care to pediatric patients and families when they have prior PPHC clinical experiences, formal pediatric hospice training, and ongoing opportunities to provide care to children and families. These findings should inform the development and investigation of clinical and educational programs to empower nurses and hospices to optimize the provision of quality care to children with serious illness and their families in the community.

Key Message:

In this population-level survey of hospice nurse comfort with pediatric care, we found that nurse comfort was significantly associated with modifiable clinical, training, and patient frequency variables. These data highlight the importance of clinical and educational interventions to support nurses who care for children with serious illness and their families.