The interactions between nurses and patients/families affect whether care recipients have positive or negative memories of their experiences. Yet, very little has been published about best practices for interactions, despite the emphasis on communication skills in professional education. In a 3-year prospective grounded theory (GT) study, we aimed to uncover what characterizes best practice health care provider (BPHCP)/parent interactions. Best practice was enacted by how BPHCPs engaged in a process of exquisitely attuning to particularities of the situation in the present moment. In this presentation, we will identify how to prepare students for this process. Semi-structured interviews were conducted with 80 HCPs (across disciplines) and 34 parents in oncology, NICU, and a children’s hospice, along with scheduled and ethnographic observations and informal conversations. Data analysis was concurrent with data collection and followed GT procedures. HCP and parent interviews were analyzed separately, initially by three researchers experienced in qualitative research and then with input from other team members. The number and interconnectedness of the elements of best practice showed that we cannot achieve best practice by focusing on teaching how to strategies for communicating with patients/families. There needs to be an emphasis on the HCP’s overriding worldview and values that directly impact interactions, because being a successful nurse is about not only what you do, but also how and why you do it. A comprehensive plan is needed to help students learn about and practice the skills inherent in the process of best practice. Nurses need to develop a plethora of technical and diagnostic skills that require training and practice. Similarly, they need to be taught the elements of best practice in interactions so they can develop the required skills. We will provide information for educators about how to help nursing students develop those skills.

In a 3-year prospective grounded theory (GT) study, we aimed to uncover what characterizes excellent or best practice health care provider (BPHCP)/parent interactions. The resulting conceptualization of best practice indicated that BPHCP interactions were influenced by: a broad worldview that resulted in specific values and a commitment to authentic engagement with parents; the depth and breadth of BPHCPs’ knowledge, persistent curiosity, openness and flexibility, and self-awareness; and, the context within which encounters occurred. Best practice was enacted by how BPHCPs engaged in a process of exquisitely attuning to particularities of the situation in the present moment. Inherent in this process were patterns of maintaining professional boundaries – the focus of this presentation. Semi-structured interviews were conducted with 80 HCPs (across disciplines) and 34 parents in oncology, neonatal intensive care, and a children’s hospice. Scheduled and ethnographic observations and informal conversations were also undertaken. Using NVivo for data management and following GT procedures, data analysis was concurrent with data collection. HCP and parent interviews were analyzed separately, initially by three researchers experienced in qualitative research achieving consensus on the codes, their relationships, and the emerging conceptualization, and with input from all other team members. BPHCPs perceived that maintaining boundaries was part of their professional responsibility. They identified challenges in maintaining boundaries and the potential risks of not doing so. Further, they described practical strategies for maintaining their own professional boundaries. Maintaining boundaries was not about rules that say what one can or cannot do. Rather, it was about maintaining one’s own sense of being a whole self (personally and professionally), particularly through reflecting and gaining self-awareness, and doing so in discussion with a supportive group of colleagues. Boundary maintenance is an important consideration for healthcare professionals, yet it can be problematic. Findings have relevance across disciplines and settings.

Life-threatening genetic, metabolic, and neurological disorders account for almost half of non-traumatic pediatric deaths. Many children with these conditions require constant care. Respite may be the only reprieve for these families whose children require intensive amounts of care. Our study aimed to investigate respite care and associated family wellbeing in cases where the child has a life-threatening condition. Charting the Territory is a multisite, longitudinal descriptive study undertaken with 275 children (0-19 years) from 258 families. We obtained demographics, plus information about whether the parents were responsible for costs and if the family income adequately covered the costs. Parents reported where they received respite care and indicated how often they received respite care on average. Baseline data were analyzed using linear mixed models to account for parents nested within families. Some parents reported receiving respite care more than once a week (29%), with 28% receiving no respite at all. Age, gender, education, current job status, household income, being responsible for costs, income meeting needs, and respite care were entered into a model for all parents predicting total burden. Female parents reported higher burden compared to males. Parents with higher education reported higher burden scores. Finally, higher levels of burden were associated with parents’ sense of inability to meet financial needs. Among working parents, there was an interaction effect between gender and sense of being able to provide care; females who could partially provide care reported much higher levels of burden compared to males. Children with life-threatening conditions often require extensive care. Families, especially parents, face a heavy burden. This burden, though taken on willingly by parents, may be easier to manage with sufficient economic ability and sense of income meeting needs. Healthcare professionals need to understand the need for respite and be advocates for these families.

BACKGROUND:There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of concerns about further burdening families. Yet, there is some evidence that research participation can have positive effects for families.OBJECTIVE:To obtain parents' perceptions about their experience of participating in one of two research studies.DESIGN:Descriptive, quantitative survey.SETTING/SUBJECTS:Caregivers of children with life-threatening conditions (n=323) who were caring for the child at home.MEASUREMENTS:Researcher-designed Impact of Participation questionnaire.RESULTS:Few differences between the two groups were found on Impact responses. Not a single parent reported regretting participating in their study and almost all (96.3%) reported that conducting research about family's experiences in pediatric palliative care had value. Just over three-quarters (76.2%) did not find participation at all painful, and 73.7% reported that participation was about as painful as expected, with 23.2% reporting less painful. Approximately half (50.5%) said that participation had at least some positive effect and only three parents reported any negative effect. An overwhelming majority (93.4%) would recommend participation to other parents in a similar situation.CONCLUSIONS:Participation in research for families with children who have a life-threatening condition is not only acceptable to parents, but may in fact have a positive effect. Although clinicians and Institutional Review Boards may be hesitant to fully support such research, it is clear that conducting research in the field of pediatric palliative care is important.

While complicated grief has been addressed in part through some recommendations for modifications in the upcoming fifth version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), there remain reasons for substantial concern about its scope therein and within clinical practice. The authors issue a call to the field, reiterating that complicated grief is complicated and cannot be confined to just one syndrome or disorder. Continued research is urged, and specific caveats are identified for exploring the complex dimensions of loss and grief. The authors advocate for ongoing dialogue about and investigation of various potential forms of complicated grief.