Finding a way with words: Delphi study to develop a discussion prompt list for paediatric palliative care
child; Humans; Pediatrics; Communication; Family/psychology; Professional-Family Relations; paediatrics; Palliative care; Advance Care Planning; Delphi technique; Stakeholder Participation; prompt list; Reminder Systems/instrumentation
BACKGROUND: Effective communication is a cornerstone of quality paediatric palliative care. Families report struggling, however, to know what to discuss, with whom, and when. Although question prompt lists exist for adult palliative care, they do not suit the unique circumstances of paediatric palliative care. AIM: To develop a prompt list suitable for paediatric palliative care. DESIGN: Underpinned by Delphi methodology, a six-phase procedure was adopted: (1) drafting items based on the findings of a literature review, (2) condensing the list of items based on group discussion, (3) refining items based on a survey of expert healthcare professionals, (4) additional refining of items based on another survey of professionals, (5) further refining of items based on cognitive interviews with family members, and (6) final review by healthcare professional and family member groups. PARTICIPANTS: Three participant groups were involved during various phases: (1) members of an Australasian paediatric palliative care national reference group, (2) healthcare professionals associated with a local paediatric palliative care service, and (3) family members who were users of the same local service. RESULTS: Through multi-phase consultation across participant groups, the draft question prompt list was refined progressively to 28 items, split across two booklets to allow end-of-life items to be provided separately, and reconceptualised as a discussion prompt list rather than a question prompt list. CONCLUSION: By involving representatives of major stakeholder groups, this study has facilitated the design of a prompt list suited to the circumstances of paediatric palliative care. Future research should trial the effectiveness of this resource.
Ekberg S; Herbert A; Johns K; Tarrant G; Sansone H; Yates P; Danby S; Bradford NK
Palliative Medicine
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/10.1177/0269216319888988" target="_blank" rel="noreferrer noopener">10.1177/0269216319888988</a>
Laying the groundwork: Building relationships for public and patient involvement in pre-clinical paediatric research
CONTEXT: Public and patient involvement is increasingly becoming an expectation of research funders and policy makers. Not all areas of health research are public-facing. Here, we outline an approach for building the skills and developing the relationships required for downstream public and patient involvement in pre-clinical adolescent rheumatology research. OBJECTIVE: To design a methodology for improving researcher-adolescent communications specifically aimed at mutual relationship building for PPI. Deliberate and effective preparation in advance of research involvement to improve the downstream success of that involvement. DESIGN: A research seminar and research skills workshop conducted entirely in 'plain English' for adolescents and their siblings aged 10-20. Upskilling of pre-clinical researchers for effective public involvement. SETTING AND PARTICIPANTS: Study co-design between the voluntary charity Irish Children's Arthritis Network and the academic research centre UCD Centre for Arthritis Research. Fifteen adolescents aged 10-20 years old living with arthritis, four pre-clinical researchers and one qualitative researcher investigating adolescent or paediatric arthritis. MAIN VARIABLES STUDIED: Relationship building and communications for effective downstream public involvement in pre-clinical and laboratory research. RESULTS: The methodology outlined here was received extremely positively. Both researchers and adolescents living with arthritis felt more comfortable communicating, more knowledgeable about juvenile arthritis and research, and more able to engage in co-operative dialogue. DISCUSSION: Engaging early, considering the needs of the community and developing appropriate involvement methodology can enable involvement in pre-clinical research. CONCLUSIONS: Dedicating resources to building relationships and skills necessary for co-operative research involvement can overcome some of the barriers to public involvement in pre-clinical and laboratory-based research.
Costello W; Dorris E
Health Expectations
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/10.1111/hex.12972" target="_blank" rel="noreferrer noopener">10.1111/hex.12972</a>
Short-term Focused Feedback: A Model to Enhance Patient Engagement in Research and Intervention Delivery
BACKGROUND: Our grant from the Patient-Centered Outcomes Research Institute (PCORI) focused on the use of nurse home visits postdischarge for primarily pediatric hospital medicine patients. While our team recognized the importance of engaging parents and other stakeholders in our study, our project was one of the first funded to address transitions of care issues in patients without chronic illness; little evidence existed about how to engage acute stakeholders longitudinally. OBJECTIVE: This manuscript describes how we used both a short-term focused feedback model and longitudinal engagement methods to solicit input from parents, home care nurses, and other stakeholders throughout our 3-year study. RESULTS: Short-term focused feedback allowed the study team to collect feedback from hundreds of stakeholders. Initially, we conducted focus groups with parents with children recently discharged from the hospital. We used this feedback to modify our nurse home visit intervention, then used quality improvement methods with continued short-term focus feedback from families and nurses delivering the visits to adjust the visit processes and content. We also used their feedback to modify the outcome collection. Finally, during the randomized controlled trial, we added a parent to the study team to provide longitudinal input, as well as continued to solicit short-term focused feedback to increase recruitment and retention rates. CONCLUSION: Research studies can benefit from soliciting short-term focused feedback from many stakeholders; having this variety of perspectives allows for many voices to be heard, without placing an undue burden on a few stakeholders.
Sauers-Ford H; Statile AM; Auger KA; Wade-Murphy S; Gold JM; Simmons JM; Shah SS
Medical Care
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/10.1097/mlr.0000000000001588" target="_blank" rel="noreferrer noopener">10.1097/mlr.0000000000001588</a>