Using EmPalPed—An Educational Toolkit on Essential Messages in Palliative Care and Pain Management in Children—As a Strategy to Promote Pediatric Palliative Care

Quintero, Ximena; Claros-Hulbert, Angélica; Tello-Cajiao, María Elena; Bolaños-López, Jhon Edwar; Cuervo-Suarez, Maria Isabel; Durán, Martha Gabriela García; García, Wendy Gómez; McNeil, Michael J.; Baker, Justin N.

doi:10.3390/children9060838

Cited by 3 publications

(2 citation statements)

References 25 publications

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“…Palliative care is a field of medicine that provides care for patients experiencing serious illness and their families at all stages of their disease trajectory. 1 According to the World Health Organization (WHO), this field of medicine is recognized under the human right to health. It improves the quality of life of patients and their families facing challenges associated with life-threatening illnesses, whether physical, psychological, social, or spiritual.…”

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confidence: 99%

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Trends in Pediatric Palliative Care Research (TPPCR) 2022; Special Edition #04 – Low Resource Setting: Commentary on Ul-Ain et al.

Akinseye

2023

Preprint

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confidence: 99%

“…There is evidence to support inadequate education among all cadres of healthcare staff in providing palliative care. 1,4 I was drawn to this study because of its objectives. In order to understand the best approach to intervention, it is pertinent to do a situational analysis among practicing health professionals.…”

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confidence: 99%

Trends in Pediatric Palliative Care Research (TPPCR) 2022; Special Edition #04 – Low Resource Setting: Commentary on Ul-Ain et al.

Akinseye

2023

Preprint

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Barriers and facilitators influencing referral and access to palliative care for children and young people with life-limiting and life-threatening conditions: a scoping review of the evidence

Holder,

Coombes,

Chudleigh

et al. 2024

Palliat Med

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Background: Palliative care is an essential component of children’s health services but is accessed by fewer children than could potentially benefit. Aim: Appraise the evidence to identify factors influencing referral and access to children’s palliative care, and interventions to reduce barriers and improve referrals. Design: Scoping review following the six stages of the Arksey and O’Malley framework. Data were charted using an adapted version of the socioecological framework. Data sources: CINAHL, MEDLINE, PsycINFO, EMBASE, Cochrane Library were searched for primary studies of any design and literature/systematic reviews. Studies reporting barriers/facilitators and interventions in relation to referral of children with a life-limiting condition to palliative care, in any setting, were included. Results: One hundred ninety five articles (primary qualitative and quantitative studies, reviews) were retained (153 reporting barriers/facilitators; 40 interventions; 2 both). Multiple factors were identified as barriers/facilitators: Individual level: underlying diagnosis, prognostic uncertainty, parental attitudes, staff understanding/beliefs; Interpersonal level: family support, patient-provider relationships, interdisciplinary communication; Organisational level: referral protocols, workforce, leadership; Community level: cultural norms, community resources, geography; Society level: policies and legislation, national education, economic environment, medication availability. Most of these factors were bi-directional in terms of influence. Interventions ( n = 42) were mainly at the organisational level for example, educational programmes, screening tools/guidelines, workplace champions and new/enhanced services; one-third of these were evaluated. Conclusion: Barriers/facilitators to paediatric palliative care referral are well described. Interventions are less well described and often unevaluated. Multi-modal approaches incorporating stakeholders from all levels of the socioecological framework are required to improve paediatric palliative care referral and access.

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The Development of a Communication Tool to Aid Parent-Centered Communication between Parents and Healthcare Professionals: A Quality Improvement Project

Marino,

Collaḉo,

Coyne

et al. 2023

Healthcare

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Good communication is central to good healthcare. As a result of poor communication between parents and healthcare professionals (HCPs) in clinical settings, this study aimed to address this problem by developing a communication tool to empower parents and act as a prompt for HCPs to talk about the child’s care and gather information at the point of admission to hospital about what is important to families, therefore supporting patient-centered communication. A design thinking process was used to develop a physical copy of Chloe’s card and evaluate its use. Design thinking is a problem-solving approach, which uses an empathetic lens to integrate viewpoints of different stakeholders throughout the process of creating solutions. Design thinking involves five processes: (1) empathise—including a literature review and data synthesis, (2) define—by completing semi-structured interviews with parents about their experience of communication and HCPs perceptions of parent’s experience of communication, (3) ideate—iterate the design of Chloe’s card with parents and HCPs, (4) prototype—develop the design of Chloe’s card, and (5) test—pilot test in clinical practice. Results from this initial study suggest that a small hand-held card, with emoticons and a place to write concerns, was acceptable to parents and feasible to use in clinical practice. Parents do not always feel heard by HCPs and a tool such as Chloe’s card may help facilitate sharing of information about matters important to them and their child. However, some HCPs felt the need for a communication tool undermined their clinical skills. Feedback from HCP participants suggests that the idea of Chloe’s card was acceptable and perceived as potentially being useful in clinical practice. Further work is required, as part of a larger study, to further refine this communication tool, identify those parents who would benefit most from Chloe’s card, as well as to further refine the HCP process prior to implementing it into clinical settings. It was noted future iterations would benefit from a digital version linked with a child’s electronic record, as well as multi-language versions and information for parents.

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Using EmPalPed—An Educational Toolkit on Essential Messages in Palliative Care and Pain Management in Children—As a Strategy to Promote Pediatric Palliative Care

Cited by 3 publications

References 25 publications

Trends in Pediatric Palliative Care Research (TPPCR) 2022; Special Edition #04 – Low Resource Setting: Commentary on Ul-Ain et al.

Trends in Pediatric Palliative Care Research (TPPCR) 2022; Special Edition #04 – Low Resource Setting: Commentary on Ul-Ain et al.

Barriers and facilitators influencing referral and access to palliative care for children and young people with life-limiting and life-threatening conditions: a scoping review of the evidence

The Development of a Communication Tool to Aid Parent-Centered Communication between Parents and Healthcare Professionals: A Quality Improvement Project

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