Community hospice nurses reported a lack of pediatric-specific education and training to care for kids with serious illnesses, compromising their ability to provide end-of-life care in this population, according to results from a qualitative study.
Approximately 50,000 U.S. children die every year due to serious illnesses, and a large proportion of them are eligible to receive community-based hospice care. However, few hospitals offer formal pediatric hospice services, and only about 1 in 10 children actually receives hospice care—and, according to population-level data, hospice nurses often lack training and experience in caring for dying children.
While previous analyses have helped identify knowledge gaps among these nurses, “including pediatric medication use and dosing, physical symptom assessment and management, psychosocial assessment and management, and communication,” hospice nurses’ specific educational needs and preferences for pediatric care “are not well understood,” Amy S. Porter, MD, PhD, of the Division of Quality of Life and Palliative Care in the Department of Oncology at St. Jude Children’s Research Hospital in Memphis, and colleagues explained in JAMA Network Open.
To address this problem, they conducted a qualitative analysis of pediatric-specific training needs and preferences among this nursing population, with the ultimate goal of creating nurse-driven recommendations to improve community-based hospice care for kids with serious illnesses.
“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,” Porter and colleagues reported. “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.”
Notably, hospice nurses reported discomfort and a need for additional training in the following areas:
- Communication with a sick child and parents.
- Communication with siblings.
- Caring for pediatric patients without sufficient pediatric physician backup.
- Symptom management in pediatric patients (as compared with adult patients).
- Anticipating the “norm” for pediatric patients overall and at the end of life.
- Preparing for and witnessing a child die.
“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,” Porter and colleagues wrote.
In an editorial accompanying the study, Katharine E. Brock, MD, MS, of Children’s Healthcare of Atlanta, wrote that articles such as the one by Porter et al “highlight an alarming lack of comfort and skill by the hospice nurses trusted to care for children and families at the end of life. We should not accept this as the best we can do. Hospices, community hospitals, pediatricians, pediatric referral centers, state PPC coalitions, and national hospice and palliative care organizations will need to come together to develop and promote national nursing curricula, regional communities, state policies, and individual mentoring and preceptorships so that every dying child receives only the highest-quality care.”
For this analysis, the study authors conducted semi-structured interviews with hospice nurses from accredited hospice organizations offering pediatric services in Tennessee, Mississippi, and Arkansas—an area which, the authors pointed out, comprises “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.”
For participant selection, Porter and colleagues distributed a mixed-methods survey to 551 community hospice nurses from 71 hospice agencies, of whom 226 were willing to undergo a follow-up interview. From these, the study authors selected a cohort of 41 nurses with various self-reported levels of comfort in pediatric hospice care, and interviews were conducted from February through April 2019.
The interview included questions designed to “assess comfort levels with, training and experience in, and barriers to caring for children with serious illness,” they wrote. “Open-ended questions were designed to explore hospice nurses’ training and support needs and preferences in pediatric palliative and hospice care.”
Of the 41 nurses included in the analysis, 38 (92.7%) were women, median age was 40-49 years (range, 20-29 to 60 years and older), and median tenure in hospice care was 5-9 years (range, <1 year to ≥20 years). The vast majority of respondents (n=39, 95.1%) were White, one was American Indian or Alaska Native, and one was Black.
Among the results, Porter and colleagues highlighted the following findings:
- Many participants reported “that they almost always feel uncomfortable with or underprepared to care for children,” with one nurse replying that she/he felt uncomfortable “about every day” and another saying she/he didn’t ever feel comfortable. Feelings of discomfort and lack of preparation were more prevalent among nurses who self-identified as somewhat or very uncomfortable in the initial survey.
- Nurses universally reported limited training in pediatric palliative and hospice care. Nurses said that increased training is urgent and highlighted five key themes: the need to absorb increasing pediatric hospice referrals, the geographic isolation of many hospice nurses from clinicians trained in pediatric care, the difficulty of finding hospices willing to accept pediatric patients, the dearth of opportunities for gaining experience and building skills and confidence given the relative rarity of pediatric patients as compared with adults, and the fundamental difference between caring for children and caring for adults.” One nurse noted that “Children aren’t little adults.”
- Respondents outlined their preferences for educators, with most noting the importance of experienced pediatricians as teachers and a need for “multidisciplinary pediatric palliative care clinician support for real-time learning,” Porter and colleagues wrote. Many requested access to more experienced nurses for hands-on experience, and some noted that the parents and family of ill children, who are often trained in their child’s care, can also be important teachers.
- Most nurses called for in-person and face-to-face learning with an experienced teacher as their preferred mode of education, and many suggested establishing a learning community “to bring like-minded clinicians together to learn in solidarity.” Nurses also suggested preceptorships and mentoring in the field that would allow for immediate feedback on performance. The most commonly requested educational topics included “technical skills (e.g., pediatric pathophysiology, symptom management, pediatric devices and equipment, and common issues for children at the end of life), communication (e.g., engaging in age-appropriate ways, caring for the family unit, navigating difficult conversations, providing end-of-life and comfort care, and contextual sensitivity), and resilience (e.g., strategies for self-care and boundaries).”
- Nurse respondents also outlined specific barriers to receiving the training they requested—namely, “lack of time away from professional or personal responsibilities, difficulties subsidizing training costs, lack of awareness of available training opportunities, geographic distance from training opportunities, lack of easy access to centralized resources, perception that hospice agencies do not value such training, and emotional burnout resulting in staff attrition.” They also offered strategies to overcome these issues, including updating staffing and scheduling approaches, increasing funding, optimizing accessibility and visibility of educational opportunities, resilience training, and “informing hospice agencies at large about how critical these resources are.”
Leveraging Educational Opportunities in Pediatric Palliative Care
Based on these findings—and particularly on the nurses’ “keen discernment of what matters most as they care for children in the community”—Porter and colleagues proposed “a training model built upon a foundation of community building. Recognizing that extensive didactic programming may not be feasible for full-time nurses, we advocate for development of a spoke-and-hub model in which pediatric academic centers partner with community hospices serving their surrounding catchment areas to bring clinicians together on a regular basis to carry out didactic learning, foster a sense of community and solidarity, help nurses network with colleagues, and reinforce access to colleagues and experts who can offer guidance in real time.”
The study authors pointed to the Partners in Pediatric Palliative Care model, the Georgia Hospice and Palliative Care Organization, and the teleteaching program Project ECHO as examples of how this type of educational model can be implemented.
In her editorial, Brock also highlighted Project ECHO as an option, as well as several other currently available pediatric palliative care education models:
- End-of-Life Nursing Education Consortium (ELNEC).
- Education in Palliative & End-of-Life Care (EPEC)-Pediatrics.
- International Children’s Palliative Care Network (ICPCN) e-learning curriculum.
- Shiley Institute for Palliative Care, Certificate in Clinical PPC.
- PPC Webinar Series.
Porter and colleagues also suggested establishing a multifaceted educational approach that includes “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 health care professionals, psychologists, social workers, chaplains, and child life specialists, as well as hospice nurses with experience in pediatric care,” they added.
Study limitations included that responses from nurses in this tristate region may not be generalizable on a national scale, and a racially and ethnically homogenous sample that primarily consisted of women, which also limited generalizability; limited experience of many hospice nurses with pediatric patients that potentially limits their ability to offer comprehensive training preferences and recommendations; and the possibility of underrepresentation of the need for pediatric-specific training and support in this population, “given the potential for selection bias for nurses who may have had more exposure to pediatric hospice patients.” Finally, Porter and colleagues did not assess respondents’ competence in the field and therefore cannot know how self-reported comfort levels corresponded with competence
-
Results from a qualitative study found that community hospice nurses reported a lack of pediatric-specific education and training to care for kids with serious illnesses, compromising their ability to provide end-of-life care in this population.
-
Hospice nurses treating pediatric patients reported discomfort in communicating with the sick child, parents, and siblings; caring for pediatric patients without sufficient backup from a pediatrician; symptom management in kids; anticipating the “norm” for pediatric patients overall and at the end of life; and preparing for and witnessing a child die.
John McKenna, Associate Editor, BreakingMED™
The study was partially supported by ALSAC.
The study authors had no relevant relationships to disclose.
Brock had no relevant relationships to disclose.
Cat ID: 138
Topic ID: 85,138,728,791,730,138,192,925
