Video tools in pediatric goals of care communication: A systematic review

Medical advancesmean a growing array of interventions, therapies, and technologies are available to support care for children with chronic and serious conditions. Some of these approaches are supported by robust data drawn from populations that perfectly reflect an individual patient\u27s physiologic, psychologic, and social situation. But much more often, clinicians and families face decisions in the context of some—or much—uncertainty about whether the intervention will do a child more harm than good. This is particularly true for seriously ill children with a limited lifespan— whether the child is a neonate born with a life-threatening brain anomaly or an adolescent with cancer. Because there is no clear right decision in these circumstances, clinical teams review potential benefits and burdens and prioritize the care goals and expectations held by the child\u27s family [1]. Communication about these aspects of care are often referred to as Goals of Care”. This patient- and family-centered approach identifies valued care, avoids unwanted interventions, and fosters holistic family support [2]. In their 2019 paper, Secunda, et al. offer an operational definition of Goals of Care: “…the overarching aims of medical care for a patient that are informed by patients’ underlying values and priorities, established within the existing clinical context, and used to guide decisions about the use of or limitation on specificmedical interventions” [2]. It is fundamental to shared decision-making and relies on bidirectional communication, particularly since care goals are usually discussed in the setting of clinical conflict, poor prognosis, or treatment limitations [3]. Yet while the Goals of Care terminology is often a vernacular phrase for clinical teams, it is, in fact, jargon that can be ambiguous in conversations with families [4]. A clinician\u27s request to discuss Goals of Care may signal unfamiliar, confusing, intimidating, or emotionally laden conversational domains to families. Additional ambiguity arises from the fact that Goals of Care conversations often occur in the context of a changing prognosis and a background of baseline uncertainty. This gap in understanding and communication undermines family support. Families processing their own hopes and goals for a child find a sense of solidarity and support from hearing about the experiences of other families facing similar situations [5-7]. Several studies have identified the value of video modality as a source for Goals of Care education, including readying viewers for discussion, enhancing emotional awareness, and processing information in a safe space [8-11]. Given the emotion-laden nature of Goals of Care conversations, videos have been recognized as helpful preparation for families [12]. Thoughtfully produced video content offers viewers access to insight, emotion, and knowledge in an almost experiential way. This may be particularly important to families of children with serious illness who often feel isolated from other families experiencing similar challenges [13]

The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review

Objective: The aim of this study is to report the benefits and burdens of palliative research participation on children, siblings, parents, clinicians, and researchers. Background: Pediatric palliative care requires research to mature the science and improve interventions. A tension exists between the desire to enhance palliative and end-of-life care for children and their families and the need to protect these potentially vulnerable populations from untoward burdens. Methods: Systematic review followed PRISMA guidelines with prepared protocol registered as PROSPERO #CRD42018087304. MEDLINE, CINAHL, PsycINFO, EMBASE, Scopus, and The Cochrane Library were searched (2000–2017). English-language studies depicting the benefits or burdens of palliative care or end-of-life research participation on either pediatric patients and/or their family members, clinicians, or study teams were eligible for inclusion. Study quality was appraised using the Mixed Methods Appraisal Tool (MMAT). Results: Twenty-four studies met final inclusion criteria. The benefit or burden of palliative care research participation was reported for the child in 6 papers; siblings in 2; parents in 19; clinicians in 3; and researchers in 5 papers. Benefits were more heavily emphasized by patients and family members, whereas burdens were more prominently emphasized by researchers and clinicians. No paper utilized a validated benefit/burden scale. Discussion: The lack of published exploration into the benefits and burdens of those asked to take part in pediatric palliative care research and those conducting the research is striking. There is a need for implementation of a validated benefit/burden instrument or interview measure as part of pediatric palliative and end-of-life research design and reporting

Eliciting the child's voice in adverse event reporting in oncology trials: Cognitive interview findings from the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events initiative: Reeve et al.

Adverse event (AE) reporting in oncology trials is required, but current practice does not directly integrate the child’s voice. The Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) is being developed to assess symptomatic AEs via child/adolescent self-report or proxy-report. This qualitative study evaluates the child’s/adolescent’s understanding and ability to provide valid responses to the PRO-CTCAE to inform questionnaire refinements and confirm content validity

Honoring the Good Parent Intentions of Courageous Parents: A Thematic Summary from a US-Based National Survey

Background: Parents of children with complex medical needs describe an internal, personal definition of “trying to be a good parent” for their loved child. Gaps exist in the current “good parent concept” literature: (1) When the idea of “trying to be a good parent” comes into existence for parents, (2) How parents’ definition of “being a good parent” may change over time and may influence interactions with the child, and (3) Whether parents perceive attainment of their personal definition. Aim: The purpose of this study was to explore these current gaps in the “good parent concept” knowledge base from the perspective of parents of children with chronic or complex illness. Materials and Methods: These themes were explored through a 63-item, mixed-method web-based survey distributed by the Courageous Parents Network (CPN), an organization and online platform that orients, educates, and empowers families and providers caring for seriously ill children. Results: The term “trying to be a good parent” resonated with 85% of the 67 responding parents. For the majority of parents, the concept of “being a good parent” started to exist in parental awareness before the child’s birth (70.2%) and evolved over time (67.5%) to include less judgment and more self-compassion. Parents identified their awareness of their child’s prognosis and changing health as influential on their “trying to be a good parent” concept. Parental advocacy, child’s age, and duration of illness were reported as influencing parental perceptions of having achieved their definition of “being a good parent”. Conclusions: Familiarity with parental perspectives on their parenting goodness and goals is a necessary core of family-centric health care

Use of Telehealth in Home-based End-of-Life Care for Children in Rural Regions

A national shortage in pediatric-trained providers results in certain geographies, primarily rural, where children with special needs are not able to access home-based care at their end-of-life. Advances in technology have made the use of telemedicine a potential modality for palliative care subspecialty clinicians to provide clinical care and support for adult-trained hospice teams. This dissertation utilizes four approaches to consider telehealth as an unexplored opportunity in care delivery: (1) a systematic review of telehealth measures and instruments to select the Technology Acceptance Model as a validated metric of telehealth acceptance uniquely now applied to pediatric care; (b) a pilot study to assess telehealth acceptance from the perspective of dying children, family caregivers, and rural hospice nurses using the Technology Acceptance Model; (c) a qualitative exploration of rural hospice nurse perspectives on the quality of telehealth in end-of-life care for children due to the relatively lower acceptance ratings of telehealth by hospice nurses as compared to children and family caregivers; (d) a longitudinal assessment of the impact of a telehealth on pediatric physical and emotional symptoms, family impact, and location of end of life for children with cancer receiving end-of-life care in rural home settings. Care inclusion of pediatric palliative medicine specialist teams using telehealth modalities has potential to foster support for rural hospice teams, family caregivers, and children reaching end of life in a rural home setting

Implementation of a Competency-Based, Interdisciplinary Pediatric Palliative Care Curriculum Using Content and Format Preferred by Pediatric Residents

Palliative care competencies at the pediatric resident training level expand learned knowledge into behavior. The objective of this study was to investigate mode of palliative care education delivery preferred by pediatric residents and to report on participatory approach to resident palliative care curriculum design. A one-hour monthly palliative care curriculum was designed and implemented in a participatory manner with 20 pediatric residents at a free-standing Midwestern children’s hospital. Outcome measures included pediatric residents’ personal attitude and perceived training environment receptivity before and after implementation of a palliative care competency-based curriculum. An 18-item survey utilizing Social Cognitive Theory Constructs was administered at baseline and after palliative care curriculum implementation (2017⁻2018 curricular year). Pediatric residents prioritized real case discussions in group format (16/20) over other learning formats. Topics of highest interest at baseline were: discussing prognosis and delivering bad news (weighted average 12.9), pain control (12.3), goals of care to include code status (11.1), and integrative therapies (10.7). Summary of ordinal responses revealed improvement in self-assessment of personal attitude toward palliative care and training environment receptivity to palliative care domains after year-long curriculum implementation. Curricular approach which is attentive to pediatric residents’ preferred learning format and self-assessment of their behaviors within their care setting environment may be beneficial in competency-based primary palliative training