Enhancing paediatric palliative care: A rapid review to inform continued development of care for children with life-limiting conditions

Abstract

Aim: Following the establishment of paediatric palliative care services over recent decades, this study sought to identify information to inform future policy and practice.; Methods: A rapid review using thematic synthesis was conducted to synthesise existing information about improving paediatric palliative care. Information was extracted in relation to key areas for investment and change: quality, access, advance care planning, skills, research, collaboration and community awareness.; Results: A total of 2228 literature sources were screened, with 369 included. Synthesised information identified clear ways to improve quality of care, access to care, advance care planning, and research and data collection. The synthesis identified knowledge gaps in understanding how to improve skills in paediatric palliative care, collaboration across Australian jurisdictions and community awareness.; Conclusions: The findings of this review bring together information from a vast range of sources to provide action-oriented information to target investment and change in paediatric palliative care over the coming decades. (© 2021 Paediatrics and Child Health Division (The Royal Australasian College of Physicians).)2020.; Behrman RE, Field MJ. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington DC: The National Academies; 2003.; Hynson JL, Gillis J, Collins JJ, Irving H, Trethewie SJ. The dying child: How is care different? Med. J. Aust. 2003; 179: S20-S2.; Palliative Care Australia. Paediatric Addendum: Palliative Care Service Development Guidelines. Canberra: PCA; 2018.; Arias-Casais N, Garralda E, Pons JJ et al. Mapping pediatric palliative care development in the WHO-European region: Children living in low-to-middle-income countries are less likely to access it. J. Pain Symptom Manage. 2020; 60: 746-53.; Tricco AC, Antony J, Zarin W et al. A scoping review of rapid review methods. BMC Med. 2015; 13: 224.; Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med. Res. Methodol. 2008; 8: 45.; World Health Organization. Integrating Palliative Care and Symptom Relief into Paediatrics. A WHO Guide for Health Care Planners, Implementers and Managers. Geneva: WHO; 2018.; Palliative Care Australia, Paediatric Palliative Care Australia & New Zealand. Policy Statement: Paediatric Palliative Care. Canberra: PCA; 2019.; Australian Commission on Safety and Quality in Health Care. National Consensus Statement: Essential Elements for Safe and High-Quality Paediatric End-of-Life Care. Sydney: ACSQHC; 2016.; Gilmer MJ. Pediatric palliative care: A family-centered model for critical care. Crit. Care Nurs. Clin. North Am. 2002; 14: 207-14.; Mastro KA, Johnson JE, McElvery N, Preuster C. The benefits of a nurse-driven, patient- and family-centered pediatric palliative care program. J. Nurs. Adm. 2015; 45: 423-8.; Stevenson M, Achille M, Lugasi T. Pediatric palliative care in Canada and the United States: A qualitative metasummary of the needs of patients and families. J. Palliat. Med. 2013; 16: 566-77.; Cooper H, Clutbertson L, Fleming S. Neonatal palliative care nursing: Working with infants on the cusp of life: A thematic review. Neonatal Paediat. Child Health Nurs. 2013; 16: 2-10.; Nilsson S, Ohlen J, Hessman E, Brännström M. Paediatric palliative care: A systematic review. BMJ Support. Palliat. Care 2020; 10: 157-63.; Mherekumombe MF, Frost J, Hanson S, Shepherd E, Collins J. Pop up: A new model of paediatric palliative care. J. Paediatr. Child Health 2016; 52: 979-82.; Balaguer A, Martin-Ancel A, Ortigoza-Escobar D, Escribano J, Argemi J. The model of palliative care in the perinatal setting: A review of the literature. BMC Pediatr. 2012; 12: 25.; Bradford NK, Herbert AR, Pedersen L-A et al. A Practical Guide to Palliative Care in Paediatrics. Brisbane: Queensland Health; 2014.; National Institute for Health and Care Excellence. End of Life Care for Infants, Children and Young People: Planning and Management: Full Guideline. London: NICE; 2017.; Snaman JM, Kaye EC, Baker JN, Wolfe J. Pediatric palliative oncology: The state of the science and art of caring for children with cancer. Curr. Opin. Pediatr. 2018; 30: 40-8.; Chong PH, Soo J, Yeo ZZ, Ang RQ, Ting C. Who needs and continues to need paediatric palliative care? An evaluation of utility and feasibility of the Paediatric Palliative Screening scale (PaPaS). BMC Palliat. Care 2020; 19: 18.; Friedrichsdorf SJ, Postier A, Dreyfus J, Osenga K, Sencer S, Wolfe J. Improved quality of life at end of life related to home-based palliative care in children with cancer. J. Palliat. Med. 2015; 18: 143-50.; Kaye EC, Rubenstein J, Levine D, Baker JN, Dabbs D Friebert SE. Pediatric palliative care in the community. CA Cancer J. Clin. 2015; 65: 315-33.; Bradford N, Armfield NR, Young J, Smith AC. The case for home based telehealth in pediatric palliative care: A systematic review. BMC Palliat. Care 2013; 12: 4.; Kaye EC, Gushue CA, DeMarsh S et al. Impact of race and ethnicity on end-of-life experiences for children with cancer. Am. J. Hosp. Palliat. Med. 2019; 36: 767-74.; Contro N, Davies B, Larson J, Sourkes B. Away from home: Experiences of Mexican American families in pediatric palliative care. J. Soc. Work End Life Palliat. Care 2010; 6: 185-204.; Spicer S, Macdonald ME, Davies D, Vadeboncoeur C, Siden H. Introducing a lexicon of terms for paediatric palliative care. Paediatr. Child Health 2015; 20: 155-6.; Durall A, Zurakowski D, Wolfe J. Barriers to conducting advance care discussions for children with life-threatening conditions. Pediatrics 2012; 129: e975-e82.; Miller EG, Levy C, Linebarger JS, Klick JC, Carter BS. Pediatric palliative care: Current evidence and evidence gaps. J. Pediatr. 2015; 166: 1536-40.e1.; Sieg SE, Bradshaw WT, Blake S. The best interests of infants and families during palliative care at the end of life: A review of the literature. Adv. Neonatal Care 2019; 19: E9-E14.; Kaempf JW, Tomlinson MW, Campbell B, Ferguson L, Stewart VT. Counseling pregnant women who may deliver extremely premature infants: Medical care guidelines, family choices, and neonatal outcomes. Pediatrics 2009; 123: 1509-15.; Royal Children's Hospital Melbourne Thinking Ahead Framework: Planning Care for Children with Life-Limiting Conditions. Parkville: Royal Children's Hospital Melbourne; 2017. Available from: https://www.rch.org.au/thinkingahead/framework/ (accessed: 13 November 2020).; Edwards D, Carrier J, Gillen E, Hawker C, Sutton J, Kelly D. Factors influencing the provision of end-of-life care for adolescents and young adults with advanced cancer: A scoping review. JBI Database Syst. Rev. Implement. Rep. 2014; 12: 405-47.; Sansom-Daly UM, Wakefield CE, Patterson P et al. End-of-life communication needs for adolescents and young adults with cancer: Recommendations for research and practice. J. Adolesc. Young Adult Oncol. 2020; 9: 157-65.; Basu S, Swil K. Paediatric advance care planning: Physician experience and education in initiating difficult discussions: Advance care planning in paediatrics. J. Paediatr. Child Health 2018; 54: 510-4.; Hilden JM, Emanuel EJ, Fairclough DL et al. Attitudes and practices among pediatric oncologists regarding end-of-life care: Results of the 1998 American Society of Clinical Oncology survey. J. Clin. Oncol. 2001; 19: 205-12.; Chong PH, Hamsah E, Goh C. Paediatric palliative care in the Asia Pacific region: Where are we now? BMJ Support. Palliat. Care 2017; 7: 17-22.; Quinn M, Gephart S. Evidence for implementation strategies to provide palliative care in the neonatal intensive care unit. Adv. Neonatal Care 2016; 16: 430-8.; Downing J, Ling J, Benini F, Payne S, Papadatou D. A summary of the EAPC White Paper on core competencies for education in paediatric palliative care. European Journal of Palliative Care 2014; 21: 245-9.; Kaye EC, Applegarth J, Gattas M et al. Hospice nurses request paediatric-specific educational resources and training programs to improve care for children and families in the community: Qualitative data analysis from a population-level survey. Palliat. Med. 2020; 34: 403-12.; Friedrichsdorf SJ, Remke S, Hauser J et al. Development of a pediatric palliative care curriculum and dissemination model: Education in Palliative and End-of-Life Care (EPEC) Pediatrics. J. Pain Symptom Manage. 2019; 58: 707-20.e3.; Slater PJ, Herbert AR, Baggio SJ et al. Evaluating the impact of national education in pediatric palliative care: The quality of care collaborative Australia. Adv. Med. Educ. Pract. 2018; 2018: 927-41.; Feudtner C, Rosenberg AR, Boss RD et al. Challenges and priorities for pediatric palliative care research in the U.S. and similar practice settings: Report from a pediatric palliative care research network workshop. J. Pain Symptom Manage. 2019; 58: 909.; Friedel M, Aujoulat I, Dubois A-C, Degryse J-M. Instruments to measure outcomes in pediatric palliative care: A systematic review. Pediatrics 2019; 143: 1-22.; Booth A, Maddison J, Wright K, Fraser L, Beresford B. Research prioritisation exercises related to the care of children and young people with life-limiting conditions, their parents and all those who care for them: A systematic scoping review. Palliat. Med. 2018; 32: 1552-66.; Downing J, Knapp C, Muckaden MA, Fowler-Kerry S, Marston J. Priorities for global research into children's palliative care: Results of an International Delphi Study. BMC Palliat. Care 2015; 14: 1-10.; Herbert A, Bradford N, Donovan L, Pedersen L-A, Irving H. Development of a state-wide pediatric palliative care service in Australia: Referral and outcomes over two years. J. Palliat. Med. 2014; 17: 288-95.; Rosenberg AR, Wolfe J. Approaching the third decade of paediatric palliative oncology investigation: Historical progress and future directions. Lancet Child Adolesc. Health 2017; 1: 56-67.; Beccaro M, Gollo G, Ceccon S et al. Students, severe illness, and palliative care: Results from a pilot study on a school-based intervention. Am. J. Hosp. Palliat. Care 2015; 32: 715-24.; Toce S, Collins MA. The FOOTPRINTSSM model of pediatric palliative care. J. Palliat. Med. 2003; 6: 989-1000.. Linking ISSN: 10344810. Subset: In Process; MEDLINE; Grant Information: Department of Health, Australian Government Date of Electronic Publication: 2021 Dec 14. ; Original Imprints: Publication: Melbourne ; Boston : Blackwell Scientific Publications, c1990- <br />