Achieving Child-centred Care for Children and Young People with Life-limiting and Life-threatening Conditions-a Qualitative Interview Study

Overview

Journal Eur J Pediatr

Specialty Pediatrics

Date 2022 Aug 11

PMID 35953678

Authors

Lucy Coombes

Debbie Braybrook

Anna Roach

Hannah Scott

Daney Hardardottir

Katherine Bristowe

Clare Ellis-Smith

Myra Bluebond-Langner

Lorna K Fraser

Julia Downing

Bobbie Farsides

Fliss E M Murtagh

Richard Harding

Affiliations

Soon will be listed here.

Abstract

Conclusion: Children with life-limiting conditions and their families experience a wide range of inter-related symptoms, concerns, and care priorities. A holistic, child-centred approach to care is needed, allowing focus on pursuit of normal childhood activities. Improvements in accessibility, co-ordination, and availability of health services are required to achieve this.

What Is Known: • Existing evidence regarding symptoms, concerns, and care priorities for children with life-limiting conditions is largely limited to proxy-reported data and those with a cancer diagnosis. • Child-centred care provision must be directed by children's perspectives on their priorities for care.

What Is New: • Social and educational activities are more important to children with life-limiting conditions than their medical concerns. • A holistic approach to care is required that extends beyond addressing medical needs, in order to support children with life-limiting conditions to focus on pursuit of normal childhood activities.

Citing Articles

Quality care for children and young people with complex and integrated care needs: A discussion on nursing-sensitive indicators.

Sheehan R, Ryder M, Brenner M Int J Nurs Stud Adv. 2024; 8:100275.

PMID: 39698063 PMC: 11653161. DOI: 10.1016/j.ijnsa.2024.100275.

Development of a child and family centred outcome measure for children and young people with life-limiting and life-threatening conditions: progress to date on the Children's Palliative Care Outcome Scale (C-POS:UK).

Braybrook D, Coombes L, Hardardottir D, Scott H, Bristowe K, Ellis-Smith C Palliat Care Soc Pract. 2024; 18:26323524241303537.

PMID: 39691593 PMC: 11650473. DOI: 10.1177/26323524241303537.

Focusing on life rather than illness: the lived experience of children with life-threatening and life-limiting conditions-a qualitative study.

Kittelsen T, Castor C, Lee A, Kvarme L, Winger A Palliat Care Soc Pract. 2024; 18:26323524241301431.

PMID: 39618726 PMC: 11607763. DOI: 10.1177/26323524241301431.

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 P, Coombes L, Chudleigh J, Harding R, Fraser L Palliat Med. 2024; 38(9):981-999.

PMID: 39248205 PMC: 11491046. DOI: 10.1177/02692163241271010.

Memory-making interventions for children and their families receiving pediatric palliative or bereavement care: A systematic review protocol.

Safarifard R, Kiernan G, Corcoran Y, Courtney E, Mitchell J, Akard T HRB Open Res. 2024; 7:30.

PMID: 39071733 PMC: 11282391. DOI: 10.12688/hrbopenres.13891.2.

References

Gomes B, Calanzani N, Higginson I . Benefits and costs of home palliative care compared with usual care for patients with advanced illness and their family caregivers. JAMA. 2014; 311(10):1060-1. DOI: 10.1001/jama.2014.553. View

Coyne I, Hallstrom I, Soderback M . Reframing the focus from a family-centred to a child-centred care approach for children's healthcare. J Child Health Care. 2016; 20(4):494-502. DOI: 10.1177/1367493516642744. View

Gale N, Heath G, Cameron E, Rashid S, Redwood S . Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Med Res Methodol. 2013; 13:117. PMC: 3848812. DOI: 10.1186/1471-2288-13-117. View

Farquhar M, Prevost A, McCrone P, Brafman-Price B, Bentley A, Higginson I . Is a specialist breathlessness service more effective and cost-effective for patients with advanced cancer and their carers than standard care? Findings of a mixed-method randomised controlled trial. BMC Med. 2014; 12:194. PMC: 4222435. DOI: 10.1186/s12916-014-0194-2. View

Higginson I, Evans C . What is the evidence that palliative care teams improve outcomes for cancer patients and their families?. Cancer J. 2010; 16(5):423-35. DOI: 10.1097/PPO.0b013e3181f684e5. View

Marshall S, Fearnley R, Bristowe K, Harding R . The perspectives of children and young people affected by parental life-limiting illness: An integrative review and thematic synthesis. Palliat Med. 2020; 35(2):246-260. PMC: 7897783. DOI: 10.1177/0269216320967590. View

Ribbers S, Wager J, Hartenstein-Pinter A, Zernikow B, Reuther M . Core outcome domains of pediatric palliative care for children with severe neurological impairment and their families: A qualitative interview study. Palliat Med. 2019; 34(3):309-318. DOI: 10.1177/0269216319885818. View

Temel J, Greer J, Muzikansky A, Gallagher E, Admane S, Jackson V . Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010; 363(8):733-42. DOI: 10.1056/NEJMoa1000678. View

Connor S, Downing J, Marston J . Estimating the Global Need for Palliative Care for Children: A Cross-sectional Analysis. J Pain Symptom Manage. 2016; 53(2):171-177. DOI: 10.1016/j.jpainsymman.2016.08.020. View

10.

Coombes L, Wiseman T, Lucas G, Sangha A, Murtagh F . Health-related quality-of-life outcome measures in paediatric palliative care: A systematic review of psychometric properties and feasibility of use. Palliat Med. 2016; 30(10):935-949. PMC: 5117129. DOI: 10.1177/0269216316649155. View

11.

Hain R, Devins M, Hastings R, Noyes J . Paediatric palliative care: development and pilot study of a 'Directory' of life-limiting conditions. BMC Palliat Care. 2013; 12(1):43. PMC: 4029745. DOI: 10.1186/1472-684X-12-43. View

12.

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(10):1552-1566. PMC: 6238162. DOI: 10.1177/0269216318800172. View

13.

Gomes B, Calanzani N, Curiale V, McCrone P, Higginson I . Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database Syst Rev. 2013; (6):CD007760. PMC: 4473359. DOI: 10.1002/14651858.CD007760.pub2. View

14.

Friedel M, Brichard B, Boonen S, Tonon C, De Terwangne B, Bellis D . Face and Content Validity, Acceptability, and Feasibility of the Adapted Version of the Children's Palliative Outcome Scale: A Qualitative Pilot Study. J Palliat Med. 2020; 24(2):181-188. DOI: 10.1089/jpm.2019.0646. View

15.

Allard A, Fellowes A, Shilling V, Janssens A, Beresford B, Morris C . Key health outcomes for children and young people with neurodisability: qualitative research with young people and parents. BMJ Open. 2014; 4(4):e004611. PMC: 3996811. DOI: 10.1136/bmjopen-2013-004611. View

16.

Mitchell S, Slowther A, Coad J, Dale J . Experiences of healthcare, including palliative care, of children with life-limiting and life-threatening conditions and their families: a longitudinal qualitative investigation. Arch Dis Child. 2020; 106(6):570-576. PMC: 8142456. DOI: 10.1136/archdischild-2020-320189. View

17.

Roach A, Braybrook D, Marshall S . Reflective insights from developing a palliative care children and young people's advisory group. Palliat Med. 2021; 35(3):621-624. PMC: 7975856. DOI: 10.1177/0269216320976035. View

18.

Beecham E, Langner R, Hargrave D, Bluebond-Langner M . Children's and Parents' Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration. Qual Health Res. 2018; 29(1):55-68. PMC: 6293456. DOI: 10.1177/1049732318786484. View

19.

Downing J, Namisango E, Harding R . Outcome measurement in paediatric palliative care: lessons from the past and future developments. Ann Palliat Med. 2018; 7(Suppl 3):S151-S163. DOI: 10.21037/apm.2018.04.02. View

20.

Namisango E, Bristowe K, Allsop M, Murtagh F, Abas M, Higginson I . Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes. Patient. 2018; 12(1):15-55. DOI: 10.1007/s40271-018-0333-5. View