Members of the PedPalASCNET team have published extensively nationally and internationally about pediatric palliative care. Click on the title to see more information about each publication, including where to access full-text when available.
2020
↡↡ Toward an understanding of advance care planning in children with medical complexity
Authors: Orkin J, Beaune L, Moore C, Weiser N, Arje D, Rapoport A, Netten K, Adam S, Cohen E, Amin R
Journal Information: (2020). Pediatrics
BACKGROUND AND OBJECTIVES: Children with medical complexity (CMC) often have multiple life-limiting conditions with no unifying diagnosis and an unclear prognosis and are at high risk for morbidity and mortality. Advance care planning (ACP) conversations need to be uniquely tailored to this population. Our primary objective for this study was to develop an in-depth understanding of the ACP experiences from the perspectives of both parents and health care providers (HCPs) of CMC.
METHODS: We conducted 25 semistructured interviews with parents of CMC and HCPs of various disciplines from a tertiary pediatric hospital. Interview guide questions were focused on ACP, including understanding of the definition, positive and negative experiences, and suggestions for improvement. Interviews were conducted until thematic saturation was reached. Interviews were audio recorded, transcribed verbatim, coded, and analyzed using content analysis.
RESULTS: Fourteen mothers and 11 HCPs participated in individual interviews. Interviews revealed 4 major themes and several associated subthemes (in parentheses): (1) holistic mind-set, (2) discussion content (beliefs and values, hopes and goals, and quality of life), (3) communication enhancers (partnerships in shared decision-making, supportive setting, early and ongoing conversations, consistent language and practice, family readiness, provider expertise in ACP discussions, and provider comfort in ACP discussions), and (4) the ACP definition.
CONCLUSIONS: Family and HCP perspectives revealed a need for family-centered ACP for CMC and their families. Our results aided the development of a family-centered framework to enhance the delivery of ACP through a holistic mind-set, thoughtful discussion content, and promoting of conversation enhancers.
DOI: 10.1542/peds.2019-2241
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↡↡ Breaking down silos: consensus-based recommendations for improved content, structure, and accessibility of advance directives in emergency and out-of-hospital settings
Authors: Carter AJE, Earle R, Grégoire M-C, MacConnell G, MacDonald T, Frager G
Journal Information: (2020). Journal of Palliative Medicine
Background: Patients receiving palliative care often interact with a variety of health care providers across various settings. While patients may experience good care from these services, the connection between these can be disjointed as care providers may work siloed from each other. This is particularly true in out-of-hospital and hospital emergency settings, where providers have no prior knowledge of the patient, particularly their advanced directives (ADs) and goals of care. In the Emergency Department or when paramedics respond to the home, ADs are further challenged by issues of clarity of content, contextual relevance, and accessibility.
Objectives: (1) What content should be in AD for medical emergencies, and (2) what would ensure the AD is accessible in times of crisis?
Design: Phase 1 involved a review of existing AD and published literature to generate a list of candidate elements. Phase 2 presented these in an online survey using modified Delphi method to paramedics, emergency nurses, and physicians. During phase 3, a focus group with palliative and emergency care providers and information technology experts was held regarding current accessibility of AD and a vision for improvement. The detailed focus group notes were coded using inductive analysis.
Results: Fifty-five candidate elements were provided for the Delphi. After three rounds, 36 panelists achieved consensus on 46 elements. Participation was greater than 80% in all rounds. From the focus group on access, six themes emerged; (1) imprecise language, (2) mismatch of protocols, (3) lack of understanding by patients/families, (4) lack of AD, (5) difficulty accessing AD, and (6) opportunities: database, education.
Conclusion: This project makes recommendations to improve palliative care in emergency or crisis situations and facilitate care consistent with patient’s goals: (1) a consensus-based template for AD content; and (2) development of a centralized database. These findings served as the foundation for the “Paramedics Providing Palliative Care at Home” program.
DOI: 10.1089/jpm.2019.0087
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↡↡ Use of oral cannabis extracts in the pediatric palliative care setting: A retrospective chart review
Authors: Doherty M, Power L, Attala M, Vadeboncoeur C
Journal Information: (2020). Palliative Medicine
DOI: 10.1177/0269216320904315
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↡↡ Engaging fathers in pediatric palliative care research
Authors: Nicholas D, Belletrutti M, Blumberg J, Ing S, Rapoport A, Barrera M
Journal Information: (2020). Journal of Social Work in End-of-Life & Palliative Care
Fathers are under-represented in pediatric palliative care research despite frequently playing a key role in the lives of their children. The purpose of this study was to identify factors that affected paternal study invitation and participation. A secondary mixed-methods evaluation design guided examination of interview and focus group data as well as field notes from a qualitative study that examined the experiences and support needs of fathers of children with a life-limiting illness. Facilitators of paternal participation in the study consisted of: fathers’ desire to gain from study participation either for themselves or others, perception of the study’s importance, sense of appreciation for the study’s focus on fathers and an established relationship with recruiting health care providers. Barriers to study participation included: recruiting health care providers’ appraisal of fathers’ lack of well-being, bereaved fathers’ self-reported poor coping and the inability to locate and contact fathers, particularly after a child’s death. Strategies for improving the engagement of fathers into research entailed: educating recruitment personnel, designing “father-focused” studies, communicating the value of the research to recruitment personnel and potential participants, and ensuring that child health records are accurate and include fathers’ contact information.
DOI: 10.1080/15524256.2019.1703877
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↡↡ Scoping review of symptoms in children with rare, progressive, life-threatening disorders
Authors: Pawliuk C, Widger K, Dewan T, Brander G, Brown HL, Hermansen A-M, Grégoire M-C, Steele R, Siden H
Journal Information: (2020). BMJ Supportive & Palliative Care
Background Q3 conditions are progressive, metabolic, neurological or chromosomal childhood conditions without a cure. Children with these conditions face an unknown lifespan as well as unstable and uncomfortable symptoms. Clinicians and other healthcare professionals are challenged by a lack of evidence for symptom management for these conditions.
Aims In this scoping review, we systematically identified and mapped the existing literature on symptom management for children with Q3 conditions. We focused on the most common and distressing symptoms, namely alertness, behavioural problems, bowel incontinence, breathing difficulties, constipation, feeding difficulties, sleep disturbance, temperature regulation, tone and motor problems and urinary incontinence. For children with complex health conditions, good symptom management is pertinent to ensure the highest possible quality of life.
Methods Scoping review. Electronic database searches in Ovid MEDLINE, Embase and CINAHL and a comprehensive grey literature search.
Results We included 292 studies in our final synthesis. The most commonly reported conditions in the studies were Rett syndrome (n=69), followed by Cornelia de Lange syndrome (n=25) and tuberous sclerosis (n=16). Tone and motor problems were the most commonly investigated symptom (n=141), followed by behavioural problems (n=82) and sleep disturbance (n=62).
Conclusion The evidence for symptom management in Q3 conditions is concentrated around a few conditions, and these studies may not be applicable to other conditions. The evidence is dispersed in the literature and difficult to access, which further challenges healthcare providers. More research needs to be done in these conditions to provide high-quality evidence for the care of these children.
DOI: 10.1136/bmjspcare-2019-001943
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2019
↡↡ A novel classification system for research reporting in rare and progressive genetic conditions
Authors: van Karnebeek DMC, Beumer D, Pawliuk C, Goez H, Mostafavi S, Andrews G, Steele R, Siden H
Journal Information: (2019). Developmental Medicine & Child Neurology
Aim: To create a classification system for severe, rare, and progressive genetic conditions for use in research reporting.
Method: A modified Delphi consensus technique was used to create and reach agreement on a new system of condition categories. Interrater reliability was tested via two rounds of an online survey whereby physicians classified a subset of conditions using our novel system. Overall percentage agreement and agreement above chance were calculated using Fleiss’ kappa (κ).
Results: Eleven physicians completed the first Delphi, with an overall agreement of 76.4%, the κ value was 0.57 (95% confidence interval 0.51–0.63), indicating moderate agreement (0.41–0.60) above chance. Based on the first survey several categories were described in more detail. The second survey confirmed a classification system with 12 categories, with an overall percentage agreement among the participants of 82.6%. The overall mean κ value was 0.71 (95% confidence interval 0.65–0.77), indicating substantial agreement (0.61–0.80).
Interpretation: Our new system was useful in categorizing a broad range of rare childhood diseases and may be applicable to other rare disease studies; further validation in larger cohorts is required.
DOI: 10.1111/dmcn.14180
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↡↡ Retrospective review of the use of transdermal buprenorphine patches (butrans) in a pediatric population
Authors: Smyth M, Haupt TS, Grégoire, M-C
Journal Information: (2019). Journal of Palliative Medicine
Background: Buprenorphine is an opioid medication used for the treatment of moderate to severe pain. In Canada, buprenorphine is not indicated for use in the pediatric population and literature surrounding its use in pediatrics is limited. Our aim was to evaluate the safety of transdermal buprenorphine in a pediatric palliative care setting.
Methods: Our study was performed at the IWK Health Centre. Medical records of 11 patients were examined for specific clinical characteristics. The study focused primarily on descriptive results; standard data analyses were not performed.
Results: Buprenorphine was found to be well tolerated in our patient population. There were no adverse effects reported in 8 of 11 patients during their treatment with buprenorphine. The remaining 3 patients described mild adverse effects in the form of skin irritation which resolved with topical steroid treatment. Efficacy was reported as anecdotal quotes from patient records.
Conclusion: In this study, the use of buprenorphine in this setting was safe in a small group of patients, with the only mild adverse effect noted being a contact dermatitis in 3 patients which resolved quickly. Other studies have also demonstrated buprenorphine to be a safe and an effective opioid for the treatment of severe pain at the end of life in a pediatric population. Given these results, the implementation of buprenorphine in pediatrics may be safe for use in patients who are unable to tolerate traditional opioid analgesic therapies.
DOI: 10.1089/jpm.2019.0381
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↡↡ A scoping review of transdermal buprenorphine use for non-surgical pain in the pediatric population
Authors: Haupt TS, Smyth M, Grégoire, M-C
Journal Information: (2019). Cureus
A preliminary evaluation to review the scope and quality of evidence surrounding transdermal buprenorphine use in the pediatric setting for non-surgical pain was conducted. Our review revealed limited data available on the use of transdermal buprenorphine in pediatric patients. Most studies surrounding this subject involve accidental ingestion of buprenorphine and its use in the treatment of neonatal abstinence syndrome. While indicated for use only in adult populations, small studies have shown encouraging results in reducing pain in children with few, if any, adverse effects. This is reassuring from a clinical perspective, as we hope to highlight the available evidence and invite researchers to expand future studies. Through this review, we have identified significant gaps in the literature surrounding the safety and use of buprenorphine in the pediatric population. To our knowledge, there are no major studies investigating this subject, and it is our hope that future studies will explore the use of transdermal buprenorphine as an alternative pain management technique in pediatrics. The intent of our scoping review is to highlight the lack of research in this area; therefore, future studies may be conducted to support its use in North America.
DOI: 10.7759/cureus.5954
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↡↡ Impact of specialized pediatric palliative care programs on communication and decision-making
Authors: Streuli JC, Widger K, Medeiros C, Zuniga-Villanueva G, Trenholm M
Journal Information: (2019). Patient Education & Counseling
OBJECTIVE: To summarize and analyze the impact of specialized pediatric palliative care (SPPC) programs on communication and decision-making for children with life-threatening conditions. METHODS: Our search strategy covered MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase through September 2018. RESULTS: We reviewed 13 studies analyzing the impact of SPPC programs on communication and decision-making using a wide range of outcome indicators. Study quality was poor in 58% of included papers. SPPC programs improved communication and decision-making between families and healthcare professionals (HCPs), within and between families, and among HCPs. CONCLUSION: SPPC programs generally support and improve communication and decision-making for children with life-threatening conditions, their families and associated HCPs. Families referred to an SPPC program had more discussions with HCPs on a broad variety of topics. However, data on communication with children, siblings, and other family members was scarce and of poor quality. PRACTICE IMPLICATIONS: More research on SPPC program efficacy is needed from the perspective of the ill child, as well as about barriers to end-of-life discussions and the specific aspects of SPPC programs responsible for improving outcomes.
DOI:10.1016/j.pec.2019.02.011
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↡↡ The experiences of physicians, nurses, and social workers providing end-of-life care in a pediatric acute-care hospital
Authors: Muskat B, Greenblatt A, Anthony S, Beaune L, Hubley P, Newman C, Brownstone D, Rapoport, A
Journal Information: (2019). Death Studies
This qualitative study explored the experiences of social workers, nurses, and physicians providing end-of-life care to children in a pediatric acute-care hospital setting. Findings demonstrated that participants experienced both professional and personal impacts of their work and employed various coping strategies under each of these domains. The acute-care setting was found to create unique challenges in providing end-of-life care. Implications for policy and practice include promotion of both individual and institutional-level coping strategies and supports that meet the various needs of staff. Implications for future research include a nuanced examination of differences in experiences among nurses, social workers, and physicians.
DOI: 10.1080/07481187.2018.1526829
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*This list of publications is comprised of articles in journals and book chapters written and published by one or more PedPalASCNET team members. Some of the articles are available for free while others are subscription based. Free articles will be indicated as such.