Community Hospice Nurses’ Perspectives on Needs, Preferences, and Challenges Related to Caring for Children With Serious Illness

Key Points Question What are the needs and preferences of community hospice nurses for pediatric training and support? Findings In this qualitative study, semistructured interviews with a purposive sample of 41 community hospice nurses revealed that most hospice nurses are uncomfortable caring for children with serious illness and perceive their insufficient pediatric training and support as targetable gaps necessitating urgent action. Nurses also offered recommendations for training and support in pediatric care provision and identified significant barriers to such training. Meaning In this study, community hospice nurses expressed an urgent need for accessible pediatric-specific education and training opportunities.


Introduction
Approximately 500 000 children in the US have a serious illness, of whom 10% die annually, 1 and of those, 11% die at home 2 -a number that continues to increase. 3 Optimal provision of home-based hospice services can lessen symptom burden and improve quality of life, 4 reduce parental psychosocial stress, 5,6 decrease costs, 7,8 and limit clinician distress. 6 Accordingly, the Institute of Medicine and the American Academy of Pediatrics advocate for the early integration of palliative and hospice services for children with serious illness. [9][10][11] Presently, however, only 1 in 10 dying children receive hospice care, usually through adult organizations. [9][10][11] Although National Hospice and Palliative Care Organization surveys have shown that more than three-quarters of adult hospices serve pediatric patients, only 14% have pediatricspecific programs. 12 Johnston et al 13 revealed that bereaved parents desired home death but reported that lack of home support made dying at home challenging, with poor symptom management leading to returns to the hospital. Caring for children at the end of life poses unique challenges that demand pediatric-specific knowledge. Alongside balancing symptom management, communication, and care coordination, hospice clinicians also carry an emotional burden, which may contribute to stress and moral distress. 14,15 Unfortunately, few community hospice nurses receive pediatric-specific training, resources, and support. [16][17][18] A previous study 16 surveyed more than 550 hospice nurses across 71 hospice agencies that offer care to children in the tristate region of Tennessee, Arkansas, and Mississippi and found that nearly 90% of nurses had no training in pediatric palliative or hospice care; 50% had no pediatric hospice experience; those with exposure to pediatric hospice care described limited training (eg, a 2-day course); and few had opportunities to maintain or build their skill sets. Unsurprisingly, hospice nurses reported overwhelming discomfort with pediatric-specific care [16][17][18] and a strong desire for further education, resources, and support specific to the care of pediatric patients. In fact, many nurses requested training on any or all topics. 18 Qualitative analysis of short-answer survey items identified several key gaps in knowledge self-reported by hospice nurses, including pediatric medication use and dosing, physical symptom assessment and management, psychosocial assessment and management, and communication. 18 Nonetheless, hospice nurses' educational needs and preferences regarding pediatric-specific training, resources, and support systems are not well understood.
To address this deficit, an interdisciplinary collaborative of pediatric palliative care and hospice physicians, advanced practice health care professionals, and nurses partnered with researchers to develop a qualitative study of hospice nurses' pediatric-specific training needs and preferences. The ultimate goal of the study was to present nurse-driven recommendations for optimizing pediatric educational resources, training programs, hospice policies, and supportive interventions to improve the overall provision of community-based hospice care to children with serious illness and their families.

Methods
This qualitative study was reviewed and approved by the institutional review board at St Jude Children's Research Hospital, and all participants provided formal verbal consent. This study followed the Consolidated Criteria for Reporting Qualitative Research (COREQ) reporting guideline.

Preceding Survey Study
Methods for the 2018 population-level survey study of hospice nurse experiences and comfort with pediatric hospice provision have been previously described. [16][17][18] Briefly, we identified all accredited hospice organizations that offer services to pediatric patients in the tristate region of Tennessee, Mississippi, and Arkansas, comprising an institutional catchment area with notably poor access to hospice organizations, with approximately one-quarter to one-third of individuals lacking services within a 30-minute drive. 19

Interview Guide Development and Content
Following review of the literature related to barriers to provision of pediatric hospice care to children in the community, 20-29 a semistructured interview guide was drafted by a multisite, interdisciplinary team of pediatric palliative care and hospice clinicians and researchers. Interview questions were iteratively reviewed and refined by a panel of stakeholders, including 2 pediatric hospice physicians and 5 pediatric hospice nurses, with serial item assessment for content and construct validity until consensus was achieved. 30 The final interview guide (eFigure in the Supplement) included questions to assess comfort levels with, training and experience in, and barriers to caring for children with serious illness. Open-ended questions were designed to explore hospice nurses' training and support needs and preferences in pediatric palliative and hospice care.

Participant Selection, Consent, and Interview Processes
Prior to this interview study, a mixed-methods survey was distributed to 551 community hospice nurses from 71 hospice agencies across the region, 226 of whom indicated willingness to have a follow-up interview. Survey participants self-identified their race and ethnicity, selecting from a provided list of categories. Purposive sampling 31 was used to select a cohort of 41 nurses representing different self-reported levels of comfort with pediatric hospice care provision, selfidentified as very uncomfortable, somewhat uncomfortable, somewhat comfortable, and very comfortable. Nurses were randomly selected until more than 10 were enrolled from each stratum.
Only 3 nurses declined interviews. Email invitations were sent to selected nurses, and for those who wished to participate, an audio-recorded telephone interview was conducted by a female physician (A.S.P.) with expertise in pediatric complex care and a doctoral degree in anthropology, with no others present on the telephone call. Before beginning each interview, the interviewer introduced herself and her background and obtained formal verbal consent. Semistructured interviews were conducted over a period of 2 months between February and April 2019. Interviews were transcribed verbatim by trained medical transcriptionists.

Codebook Development, Coding, Adjudication, and Analysis
Content analyses were conducted using MAXQDA (VERBI Software) to organize data. 32 The eTable in the Supplement presents each step of codebook development, piloting, coding, and synthesis and validation, all of which were performed in accordance with COREQ guidelines. 33 Interviews continued until data saturation was reached.

Results
A total of 41 community hospice nurses completed interviews. Table 1 presents self-reported participant demographic data and clinical practice variables. Thirty-eight of the nurses were women (92.7%) and 3 were men (7.3%), with a median age of 40-49 years (range, 20-29 to Ն60 years) and median tenure of 5-9 years (range, <1 to Ն20 years) practicing as a hospice nurse. Respondents included 1 American Indian or Alaska Native nurse (2.4%), 1 Black nurse (2.4%), and 39 White nurses (95.1%). Interview duration ranged from 20 to 60 minutes. Many nurses reported that they almost always feel uncomfortable with or underprepared to care for children. When asked, "Will you please think back to the last time you were working with a child with palliative or hospice care needs in which you felt uncomfortable or underprepared and tell me about that," one interviewee responded: "About every day," and another explained: "I don't ever really feel comfortable." One nurse described the apprehension that she and her colleagues feel: "We all get kind of a pit in our stomach of 'How am I going to take care of this child and their family?'" Another nurse offered: "I have such a lack of education and knowledge in taking care of children in hospice that if I got them as a patient, I would have no idea." Reflecting on a particular experience caring for a pediatric patient, one nurse shared: "This day-it was a learning curve for everybody, and I don't feel like we had the training, the tools, or the resources to benefit the patient." These feelings of discomfort and lack of preparation were reported more frequently by nurses who, in the preceding survey, had self-identified as either somewhat or very uncomfortable compared with those who had self-identified as either somewhat or very comfortable. Importantly, many conveyed that this discomfort makes nurses unwilling to care for a child at the end of life. Table 2 presents specific facets of pediatric care with which hospice nurses reported feeling uncomfortable. Themes included communicating with a sick child and the child's parents, • "I feel more uncomfortable working with those patients…even how to communicate with them. What to say to the patient…or the parent because that is a whole different element in that kind of care. So, to communicate and medically handle the child is just a different-I feel like I'm a lot more hands-off than I would be with my adult patients because it's like, 'Oh, I don't feel comfortable with this.' If it's an infant, the parent would probably hold the infant more than I would ever feel comfortable. Or if it's a younger child, I would probably end up directing my conversation to the parent [more] than involving the child, which I feel like is due to my comfort level rather than how it should be." • "I think the biggest thing in pediatrics is we forget about the kids…, how intuitive they are. They know they're dying; it's not a secret. And the parents may want it to be a secret, but the children know. And most of the time when the parents are out of the room the kid will let you know they know. I think it's so important that you acknowledge the parents but more importantly acknowledge the patient, the child. And so many nurses forget. I forget."

JAMA Network Open | Pediatrics
Communication with siblings • "I have a 15-year-old that I have to take care of. There's 4 brothers in the home and they're all different ages, and it's hard to approach the [siblings] because I'm not really sure how to approach, how…to teach them about life and death." Caring for pediatric patients without sufficient pediatric physician backup • "I don't know that we would accept pediatric patients… I would have a very difficult time saying, 'Yes, we will accept this pediatric patient,' if I didn't know we didn't have a strong pediatric physician providing the clinical resources we need… The clinical background and making sure we're dosing correctly, we're recognizing signs and symptoms, we're managing them to the best of our ability. In the home, to keep the patient comfortable is important." Symptom management in pediatric patients (as compared with adult patients) • "I felt just so helpless. This poor little baby was like 5 days old. He was just kind of gasping for air and I felt like he was drowning in his secretions. I just didn't have all the stuff there that I needed. I kept thinking he was going to pass anytime and it just kept going on for hours and hours. So, I said at that time I'm never going to take care of a baby again. I do admissions now. I'm going to get them what they need up front just in case." • "[Pediatric care] is so different from adults. I know symptom management-wise, immediately pretty much what I need to do for an adult.
With kids, I'm double-checking myself. The confidence is not there, especially with symptom management." Anticipating the "norm" for pediatric patients overall and at the end of life . So, in our little area, we are starting to see more pediatric patients because there's this hospital here now and they're referring to us more." • "They know at [the children's hospital] that [our agency] will take a pediatric patient, so it seems like we get a lot of referrals from them." Geographic isolation of many hospice nurses from clinicians trained in pediatric palliative and hospice care • "Sometimes we feel like we're inventing it out here in Tennessee and southwest Virginia." Difficulty of finding hospices willing to accept pediatric patients • "I truly don't know of a hospice company in our area that really takes care of children." • "I think it's getting harder and harder to find hospices that're really willing to take care of children. In the way that I need to be taken care of." Given the relative rarity of pediatric patients as compared to adults, dearth of opportunities for gaining experience and thus building skills and confidence • "I think that's because our pediatric volume is so low, every time that we do get a pediatric referral, it's a very uncomfortable thing because we don't do it a whole lot." • "It's hard when there is not that many in the area… Like I said, I've had 3 or 4 patients in 4 years. It's just hard to get that comfort level." Fundamental difference between caring for children and caring for adults • "Pediatrics is a bitch. And if you don't feel comfortable around that and never really dealt with kids, then you do need, in my opinion, you need more training and more knowledge and more not only the book knowledge, but that hands-on…"

"So I'm Not in This Alone": Preferences for Educators and Access to Expertise
Nurses described specific preferences for educators (

"I'm More of a Hands-On, Interactive Learner": Preferred Learning Modalities and Training Topics
Preferred training modalities are also described in Table 3. In-person learning from a teacher through face-to-face interactions was the most frequent recommendation. Many also suggested establishing

"Time Is the Biggest Thing": Barriers to Training and Solutions for Overcoming Challenges
Nurses identified specific barriers to receiving ideal training (  • In-person and face-to-face learning and didactics (eg, lectures, seminars, workshops, training courses, conferences, or small group discussions) • Establishing a learning community: value of bringing together like-minded clinicians to learn together in solidarity • Experience-based education: recognizing that past experiences caring for children with serious illness is a good foundation for PPHC learning • Ease: ready access to tools and resources • Credit: option to receive certification or formalized credit for education Topics • Assessing and responding to common symptoms experienced by children in hospice • Cultural competency (eg, caring for patients and families of different races, ethnicities, religions, sexual orientations, or gender identifications) • Navigating difficult conversations (eg, how to talk to children about their illness; how to talk with families; how to talk about end of life with children and families; goals of care; decision-making; or patient and family empowerment) • Caring for and supporting the whole family unit, as well as the dying child • Provision of grief and bereavement services • How to engage in an age-appropriate way (eg, conducting a visit in the context of the child's developmental stage; providing care in a way that is not scary for a pediatric patient) • Pediatric pathophysiology and common diagnoses • Provision of nonpharmacologic approaches to manage symptoms (eg, any strategy to provide comfort apart from administration of a medication; complementary or alternative therapies; or psychosocial support) • Strategies for taking care of oneself (eg, preventing burnout; developing resilience; or establishing boundaries) • Familiarity with pediatric devices and equipment (eg, pumps; PEG tubes; ventilators; or tracheostomies) • Common issues at the end of life in children (eg, how disease progression and end of life differ in children vs adults) • Balancing authentic emotions and professionalism (eg, "it's ok to cry"; "it's ok to be human"; or "it's ok to be apprehensive") • Provision of end-of-life or comfort care, including facilitation of death with dignity and provision of postmortem care • Provision of legacy-building activities and support (eg, activities or conversations designed to help family members remember the child after death) Abbreviations: PEG, percutaneous endoscopic gastrostomy; PPHC, pediatric palliative and hospice care.

Discussion
In this qualitative study, nurses providing hospice and palliative care to patients and families across Tennessee, Mississippi, and Arkansas expressed their lack of comfort and training in pediatric care provision, their strong desire for pediatric-specific education, and their belief that there is an urgent need for development of resources and training to improve pediatric palliative and hospice care practice in the community. Additionally, nurses stated clear preferences with respect to source, delivery, and topical content; recognized practical threats to educational resources and programs; and proposed solutions for circumventing or overcoming these barriers. We found few meaningful differences thematically between nurses stratified by self-reported levels of comfort with provision of care to children and their families.
The most striking finding echoed across the 41 interviews was the immediacy with which hospice nurses expressed a need for pediatric-specific training and support. Nearly all nurses felt both privileged and burdened by the responsibility of caring for dying children, conveying urgency in  their need for interventions to ensure provision of optimal care. These findings are a call to action for the palliative care community to collaborate in rapid implementation of educational programs and networks to systematically support hospice nurses in the field.
Nurses also stressed the importance of access to experts in pediatric hospice and palliative care.
Notably, access to information was described as essential but not sufficient-community and solidarity are critical aspects of education and support.  36 Although specific processes may vary by regional collaborative, we suggest a multifaceted approach including (1) an annual retreat; (2) a monthly, 1-hour virtual meeting during which nurses present case studies from the field and ask for guidance from pediatric palliative care experts; and (3) face-to-face spin-off learning in the forms of both in-service apprenticeship with a nurse champion and one-on-one guidance from nurse mentors in patients' homes. Crucially, to serve nurses' multifaceted needs, the expert team designing and implementing this intervention must be interprofessional, including physicians, advanced practice "Money of course is always an issue. We're a nonprofit so to pay for folks to get an education when we have a fairly high turnover rate is difficult so somethings you know those things are always difficult." "Our hospital system had begun to offer more education, and then all of a sudden, cuts came through, and they took it all away." Funding: providing financial support to attend training, making training more affordable or more cost-effective Awareness of opportunities: lack of knowledge about educational opportunities (ie, suboptimal advertising; reliance on word of mouth) "I feel like my biggest barrier is…knowing about them, advertisement of the resources that are out there and the educational opportunities." Optimizing accessibility and visibility: making PPHC education content more accessible, available, or visible; creating awareness that training exists and making it convenient for companies to use (online formats, usage of current company infrastructure to disseminate training information) Geography: location of (and geographic distance from) training opportunities "I live in a rural area. So, there's really not a lot of opportunity here for that for learning or for those types of hands-on experiences. There's definitely no teaching hospitals or-in this area, other than driving at least an hour and a half or longer." Access: lack of centralized, readily accessible resources "I had to spend a lot of time trying to figure out how to take the course or how to even find the information on how to take the course, or how to find the literature for the course. It was very, very difficult. I ended up with time and stuff like that and starting to work a lot more, that's whenever I first started working with the company. I kind of, just gave up on it there, for a little while. I was like, 'I'll just read this and this,' because it was so difficult to find all the pieces that I needed for the course." Value by hospice: perception that hospice organization does not recognize value of PPHC education/training (eg, need for "corporate approval"; funding for travel; or time off for in-service training or external training) "I think that when it comes down to it, when you're ready to have the true conversation, 'Okay, this is going to happen in our agency,' it causes a real defined line. There's one side that doesn't want to have anything to do with pediatric patients." Making a big picture argument: convincing leadership of the value added by PPHC training Burnout: emotional barriers to training (eg, burnout; staff attrition/turnover) "Building this into a curriculum that an agency buys into, so that they understand the value that it adds. Sometimes it's expected that you learn on your own but not necessarily that they provide that learning for you." Optimizing relevance: topics covered during training should be relevant, pragmatic, applicable to daily practice Abbreviation: PPHC, pediatric palliative and hospice care. health care professionals, psychologists, social workers, chaplains, and child life specialists, as well as hospice nurses with experience in pediatric care.

Limitations
Our study had several limitations. First, findings from nurses in our tristate region are not inherently representative of hospice nurse experiences or preferences nationwide. Nonetheless, statewide data from Georgia 35 and Nebraska 37 corroborate our findings, suggesting that they may be representative of the experience of hospice nurses across the country. Second, we did not assess competence in the field and thus cannot know how self-reported comfort levels correlate with competence. Third, the cohort of nurses interviewed were predominantly women and racially and ethnically homogenous; the majority were White, and all were non-Hispanic. This sample is not representative of the tristate region's overall population, although it is worth exploring in further research whether such homogeneity is representative of the hospice nurse population serving the region. Fourth, many hospice nurses had limited exposure to pediatric patients, which may constrain their ability to offer comprehensive training preferences and recommendations. Finally, our findings may underrepresent the need for pediatric-specific training and support among hospice nurses given the potential for selection bias for nurses who may have had more exposure to pediatric hospice patients.

Conclusions
In this qualitative study, community hospice nurses expressed an urgent need and clear preferences for pediatric-specific training, awareness of barriers to training, and recommendations for circumventing these challenges. We hope that these findings will inform development and investigation of educational resources and training opportunities for nurses to enable optimal provision of palliative and hospice care to children with serious illness.