Systematic Review of Telehealth Survey Instruments to Assess Patient and Family Caregiver Communication Experience

The COVID19 pandemic has resulted in rapid upsurge in telehealth use without clear knowledge of patient or family caregiver communication experiences using telehealth. This poster reports on a systematic review of quantitative and qualitative research inclusive of telehealth survey instruments following PRISMA guidelines using a PROSPERO registered protocol . 13 well-designed telehealth communication surveys were included in the final analysis. The findings from this systematic review reveal the need for development of survey instruments inclusive of communication experience in addition to current emphasis on technology interface and survey instruments relevant to pediatric family cohorts.https://digitalcommons.unmc.edu/surp2020/1018/thumbnail.jp

Exploring the impact of pediatric short bowel syndrome on parent well‐being using a disease‐specific pilot survey

Background: Children with short bowel syndrome (SBS) have complex care needs, most of which are met in the home by family caregivers who may experience a range of stressors unique to this experience. Prior research suggests that parents of children with SBS have poorer health‐related quality of life than peers parenting children without health needs, but the mechanisms shaping parent outcomes are understudied. Methods: A pilot survey was developed using a community‐driven research design to measure the impact of disease‐specific items on parent‐perceived well‐being. The cross‐sectional survey, which included both closed‐ended and open‐ended items, was distributed to a convenience sample of parents of children with SBS. Quantitative and qualitative data were integrated for a mixed‐methods analysis of how individual items impacted parent well‐being. Results: Twenty parents completed the survey. Sleep interruptions, lack of support and resources, and psychological stressors and their mental health implications were more frequently reported as stressors than logistics related to caregiving (e.g., managing therapies and preparing specialized meals). Conclusion: The impact of a child\u27s SBS on parent well‐being may stem mainly from three interconnected domains: poor sleep and its consequences, lack of access to support and resources, and a range of psychological stressors that affect parent mental health. Understanding the mechanisms through which SBS shapes parent well‐being is a necessary first step for developing targeted interventions to support parents and provide family‐centered care

Exploring the impact of pediatric short bowel syndrome on parent well‐being using a disease‐specific pilot survey

Background: Children with short bowel syndrome (SBS) have complex care needs, most of which are met in the home by family caregivers who may experience a range of stressors unique to this experience. Prior research suggests that parents of children with SBS have poorer health‐related quality of life than peers parenting children without health needs, but the mechanisms shaping parent outcomes are understudied. Methods: A pilot survey was developed using a community‐driven research design to measure the impact of disease‐specific items on parent‐perceived well‐being. The cross‐sectional survey, which included both closed‐ended and open‐ended items, was distributed to a convenience sample of parents of children with SBS. Quantitative and qualitative data were integrated for a mixed‐methods analysis of how individual items impacted parent well‐being. Results: Twenty parents completed the survey. Sleep interruptions, lack of support and resources, and psychological stressors and their mental health implications were more frequently reported as stressors than logistics related to caregiving (e.g., managing therapies and preparing specialized meals). Conclusion: The impact of a child\u27s SBS on parent well‐being may stem mainly from three interconnected domains: poor sleep and its consequences, lack of access to support and resources, and a range of psychological stressors that affect parent mental health. Understanding the mechanisms through which SBS shapes parent well‐being is a necessary first step for developing targeted interventions to support parents and provide family‐centered care

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