Educational Priorities for Providing End-of-Life Care: Parent Perspectives
interpersonal & communication skills; Medical education; Palliative Medicine; Parent perspectives; Pediatric
OBJECTIVES: Partnership with parents is a tenet of pediatric medicine; however, initiatives to include parents in education and research have been limited. Through focus groups, we included parents at the beginning of curriculum development by asking them to identify the priorities, existing supports, and opportunities for improvement in their child's end-of-life (EOL) care. METHODS: English and Spanish-speaking bereaved parents whose child had been cared for by the palliative care team and had died >18 months before the study initiation were invited to participate. In-person focus groups and a follow-up phone call were used to elicit opinions and capture a diversity of viewpoints. Themes were identified and clustered through an iterative analytic process. RESULTS: Twenty-seven parents of 17 children participated, with the total sample size determined by thematic saturation. Four themes were identified as important to parents in their child's EOL care: (1) honoring the role of the parent, (2) having confidence in the care team, (3) receiving gestures of love and caring, and (4) navigating logistic challenges. CONCLUSIONS: We asked parents to be partners in guiding priorities for health care education and professional development to improve pediatric EOL care. In addition to strengthening skills in communication, confidence in the team, and compassion, parents in this study identified a need for hospital staff to anticipate financial and social stressors and provide supportive resources more readily. Additionally, parents described clinical and nonclinical staff as providing support, suggesting that a multidisciplinary and interdisciplinary curriculum be developed to improve pediatric EOL care.
Arora G; Caliboso M; Baird J; Rusch R; Greenman J; Obregon D; Serwint JR
Pediatrics
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2021-051379" target="_blank" rel="noreferrer noopener">10.1542/peds.2021-051379</a>
The use of telemedicine for home-based palliative care for children with serious illness: a scoping review
Pediatrics; Telemedicine; Palliative Care; Home-Based Palliative Care
CONTEXT: There is potential value to home-based palliative care for children with serious illness delivered via telemedicine (TM HBPC). Evidence to guide optimal design and delivery of TM HBPC is urgently needed. OBJECTIVES: To explore the existing literature to identify research on pediatric TM HBPC. METHODS: Systematic scoping review conducted following PRISMA-ScR guidelines. PubMed, Embase, Cochrane CENTRAL, CINAHL, Web of Science, PsycINFO, and ERIC were searched (January-April 2020) using keywords and controlled vocabulary. The Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) framework was used to identify components in the literature that facilitate or limit dissemination of TM HBPC interventions. RESULTS: Seventeen articles were included. Most of the literature comprised small descriptive studies, such as case reports, and feasibility trials. Many studies focused on acceptability, and the TM HBPC model was generally acceptable to both clinicians and families. Few studies measured patient access to care, patient and family-centered health or quality of life outcomes. While included studies addressed multiple criteria for each of the RE-AIM dimensions, much of the information was qualitative and subjective. CONCLUSION: TM HBPC is a promising strategy to increase access to palliative care for children with serious illness. However, the current review found a need for more robust information describing implementation and effectiveness of TM HBPC models, adaptation across care settings, and maintenance over time in order to guide and facilitate broader dissemination.
Miller KA; Baird J; Lira J; Herrera Eguizabal J; Fei S; Kysh L; Lotstein D
Journal of Pain and Symptom Management
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2020.12.004" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.12.004</a>
Moving Family-centered Care Forward: Bereaved Fathers' Perspectives
Bereaved Fathers; Family-centered Care; Pediatric Health Care Providers Behaviors
This paper describes the key behaviors of "excellent" pediatric healthcare providers - a term used by fathers of children with complex, life-threatening illness to describe providers who consistently and effectively engage in family-centered care for children and their families. Using interview data from a multi-site grounded theory study of 60 fathers with a deceased child, five behaviors were identified: getting to know the family as individuals, talking about non-healthcare related topics, connecting in a human-human relationship, including parents as team members, and applying specialized knowledge to help the family. These behaviors are consistent with the goals of family-centered care, but they are inconsistently practiced, resulting in less-than-optimal care for children and their families during periods of crisis and vulnerability. A renewed focus on relationship building and interactions with families is needed, as well as a re-evaluation of the training of pediatric healthcare providers.
Davies B; Baird J; Gudmundsdottir M
Journal Of Hospice And Palliative Nursing
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1097/NJH.0b013e3182765a2a" target="_blank" rel="noreferrer">10.1097/NJH.0b013e3182765a2a</a>
Best Practice In Provider/Parent Interaction
Pediatrics; Quality; Parents Experiences; Communication; Hospital Staff; Pediatric Palliative Care; Grounded Theory; Social Sciences; Biomedical; Family Perspectives; Qualitative Analysis; Empathy; Medicine; Practice Guidelines; Childs Death; Canada; Social Sciences; Interdisciplinary; Patient-provider; Reflection; Information Science & Library Science; Palliative Care; Relationships; Best Practice
In this 3-year prospective grounded theory study in three pediatric settings, we aimed to develop a conceptualization of best practice health care providers (BPHCPs) in interaction with parents of children with complex, chronic, life-threatening conditions. Analysis of semistructured interviews with 34 parents and 80 health care professionals (HCPs) and 88 observation periods of HCP/parent interactions indicated that BPHCPs shared a broad worldview; values of equity, family-centered care, and integrity; and a commitment to authentic engagement. BPHCPs engaged in direct care activities, in connecting behaviors, and in exquisitely attuning to particularities of the situation in the moment, resulting in positive outcomes for parents and HCPs. By focusing on what HCPs do well, findings showed that not only is it possible for HCPs to practice in this way, but those who do so are also recognized as being the best at what they do. We provide recommendations for practice and initial and ongoing professional education.
Davies B; Steele R; Krueger G; Albersheim S; Baird J; Bifirie M; Cadell S; Doane G; Garga D; Siden H; Strahlendorf C; Zhao Y
Qualitative Health Research
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1177/1049732316664712" target="_blank" rel="noreferrer noopener">10.1177/1049732316664712</a>