Developing rights-based standards for children having tests, treatments, examinations and interventions: using a collaborative, multi-phased, multi-method and multi-stakeholder approach to build consensus.
Child rights
Children
Consensus
Procedures
Restraint
Journal
European journal of pediatrics
ISSN: 1432-1076
Titre abrégé: Eur J Pediatr
Pays: Germany
ID NLM: 7603873
Informations de publication
Date de publication:
Oct 2023
Oct 2023
Historique:
received:
15
05
2023
accepted:
12
06
2023
revised:
23
05
2023
medline:
2
11
2023
pubmed:
11
8
2023
entrez:
11
8
2023
Statut:
ppublish
Résumé
Children continue to experience harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care. The international ISupport collaboration aimed to develop standards to outline and explain good procedural practice and the rights of children within the context of a clinical procedure. The rights-based standards for children undergoing tests, treatments, investigations, examinations and interventions were developed using an iterative, multi-phased, multi-method and multi-stakeholder consensus building approach. This consensus approach used a range of online and face to face methods across three phases to ensure ongoing engagement with multiple stakeholders. The views and perspectives of 203 children and young people, 78 parents and 418 multi-disciplinary professionals gathered over a two year period (2020-2022) informed the development of international rights-based standards for the care of children having tests, treatments, examinations and interventions. The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds. Conclusion: This is the first study of its kind which outlines international rights-based procedural care standards from multi-stakeholder perspectives. The standards offer health professionals and educators clear evidence-based tools to support discussions and practice changes to challenge prevailing assumptions about holding or restraining children and instead encourage a focus on the interests and rights of the child. What is Known: • Children continue to experience short and long-term harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care. • Professionals report uncertainty and tensions in applying evidence-based practice to children's procedural care. What is New: • This is the first study of its kind which has developed international rights-based procedural care standards from multi-stakeholder perspectives. • The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds.
Identifiants
pubmed: 37566281
doi: 10.1007/s00431-023-05131-9
pii: 10.1007/s00431-023-05131-9
pmc: PMC10587267
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
4707-4721Informations de copyright
© 2023. The Author(s).
Références
Karlsson K, Galvin K, Darcy L (2019) Medical procedures in children using a conceptual framework that keeps a focus on human dimensions of care–a discussion paper. Int J Qual Stud Health Well Being 14(1):1675354. https://doi.org/10.1080/17482631.2019.1675354
doi: 10.1080/17482631.2019.1675354
pubmed: 31621530
pmcid: 6807864
Saron H, Bray L, Carter B, Wilkinson C (2023) Communication during children’s X-ray procedures and children’s experiences of the procedure: A scoping review. Radiography 29(1):S87–S95. https://doi.org/10.1016/j.radi.2023.02.012
doi: 10.1016/j.radi.2023.02.012
pubmed: 36872135
Livesley J, Long T (2013) Children's experiences as hospital in-patients: Voice, competence and work. Messages for nursing from a critical ethnographic study. Int J Nursing Stud 50(10):1292–1303. https://doi.org/10.1016/j.ijnurstu.2012.12.005
Brenner M (2007) Child restraint in the acute setting of pediatric nursing: an extraordinarily stressful event. Issues Compr Pediatr Nurs 30(1–2):29–37. https://doi.org/10.1080/01460860701366658
doi: 10.1080/01460860701366658
pubmed: 17613140
Bray L, Carter B, Snodin J (2016) Holding children for clinical procedures: perseverance in spite of or persevering to be child-centered. Res Nurs Health 39(1):30–41. https://doi.org/10.1002/nur.21700
doi: 10.1002/nur.21700
pubmed: 26575179
Bray L, Carter B, Ford K, Dickinson A, Water T, Blake L (2018) Holding children for procedures: an international survey of health professionals. J Child Health Care 22(2):205–215. https://doi.org/10.1177/1367493517752499
doi: 10.1177/1367493517752499
pubmed: 29355025
Forsner M, Cyrén M, Gerdin A, Rullander AC (2023) It hurts to get forced: Children's narratives about restraint during medical procedures. Paedia Neonatal Pain 0:1–9. https://doi.org/10.1002/pne2.12093
Bray L, Snodin J, Carter B (2015) Holding and restraining children for clinical procedures within an acute care setting: an ethical consideration of the evidence. Nurs Inq 22(2):157–167
doi: 10.1111/nin.12074
pubmed: 25053126
Murdoch L, Chang YS (2022) Parental experiences of caring for children who have learning disabilities and procedural anxiety in hospital: An interpretive phenomenological study. Child 48(5):809–819. https://doi.org/10.1111/cch.12990
Page A, McDonnell A, Gayson C, Moss F, Mohammed N, Smith C, Vanes N (2015) Clinical holding with children who display behaviours that challenge. Br J Nursing 24(21):1086–1093. https://doi.org/10.12968/bjon.2015.24.21.1086
Oulton K, Wray J, Kenten C, Russell J, Carr L, Hassiotis A, Jewitt C, Kelly P, Kerry S, Tuffrey-Wijne I, Whiting M (2022) Equal access to hospital care for children with learning disabilities and their families: a mixed-methods study. Health Social Care Del Res 10(13). https://doi.org/10.3310/NWKT5206
Taddio A, Ipp M, Thivakaran S, Jamal A, Parikh C, Smart S, Sovran J, Stephens D, Katz J (2012) Survey of the prevalence of immunization noncompliance due to needle fears in children and adults. Vaccine 30(32):4807–4812. https://doi.org/10.1016/j.vaccine.2012.05.011
Noel M, Taddio A, McMurtry CM, Chambers CT, Riddell RP, Shah V (2015) HELPinKids&Adults knowledge synthesis of the management of vaccination pain and high levels of needle fear: Limitations of the evidence and recommendations for future research. Clin J Pain 31(Suppl 10):S124. https://doi.org/10.1097/AJP.0000000000000266
doi: 10.1097/AJP.0000000000000266
pubmed: 26352918
pmcid: 4900408
McMurtry CM, Riddell RP, Taddio A, Racine N, Asmundson GJ, Noel M, Chambers CT, Shah V (2015) Far From" Just a Poke": Common Painful Needle Procedures and the Development of Needle Fear. Clin J Pain. https://doi.org/10.1097/AJP.0000000000000272
doi: 10.1097/AJP.0000000000000272
pubmed: 26352921
pmcid: 4900433
Kassam-Adams N, Butler L (2017) What do clinicians caring for children need to know about pediatric medical traumatic stress and the ethics of trauma-informed approaches? AMA J Ethics 19(8):793–801. https://doi.org/10.1001/journalofethics.2017.19.8.pfor1-1708
doi: 10.1001/journalofethics.2017.19.8.pfor1-1708
pubmed: 28846519
Lerwick JL (2016) Minimizing pediatric healthcare-induced anxiety and trauma. World J Clin Pediatr 5(2):143. https://doi.org/10.5409/wjcp.v5.i2.143
doi: 10.5409/wjcp.v5.i2.143
pubmed: 27170924
pmcid: 4857227
Morton L, Cogan N, Kornfält S, Porter Z, Georgiadis E (2020) Baring all: The impact of the hospital gown on patient well-being. Br J Health Psychol 25(3):452–473. https://doi.org/10.1111/bjhp.12416
doi: 10.1111/bjhp.12416
pubmed: 32314508
Morton L (2020) Using psychologically informed care to improve mental health and wellbeing for people living with a heart condition from birth: A statement paper. J Health Psychol 25(2):197–206. https://doi.org/10.1177/1359105319826354
doi: 10.1177/1359105319826354
pubmed: 30729809
Lloyd M, Law GU, Heard A, Kroese B (2008) When a child says ‘no’: Experiences of nurses working with children having invasive procedures. Nursing Child Young People 20(4). https://doi.org/10.7748/paed2008.05.20.4.29.c8252
Karlsson K, Englund ACD, Enskär K, Rydström I (2014) Parents’ perspectives on supporting children during needle-related medical procedures. Int J Qual Stud Health Well Being 9(1):23759. https://doi.org/10.3402/qhw.v9.23759
doi: 10.3402/qhw.v9.23759
pubmed: 25008196
Leroy PL, Costa LR, Emmanouil D, van Beukering A, Franck LS (2016) Beyond the drugs: nonpharmacologic strategies to optimize procedural care in children. Curr Opin Anaesthesiol 29(1):S1–S13. https://doi.org/10.1097/ACO.0000000000000312
doi: 10.1097/ACO.0000000000000312
pubmed: 26926330
Blount RL, Zempsky WT, Jaaniste T, Evans S, Cohen LL, Devine KA, Zeltzer LK (2009) Management of pediatric pain and distress due to medical procedures. In: Roberts MC, Steele RG (eds) Handbook of pediatric psychology. The Guilford Press, pp 171–188
Jaaniste T, Hayes B, Von Baeyer CL (2007) Providing children with information about forthcoming medical procedures: A review and synthesis. Clin Psychol Sci Pract 14(2):124. https://doi.org/10.1111/j.1468-2850.2007.00072.x
doi: 10.1111/j.1468-2850.2007.00072.x
Bray L, Ford K, Dickinson A, Water T, Snodin J, Carter B (2019) A qualitative study of health professionals’ views on the holding of children for clinical procedures: Constructing a balanced approach. J Child Health Care 23(1):160–171. https://doi.org/10.1177/1367493518785777
doi: 10.1177/1367493518785777
pubmed: 30004245
Bray L, Booth L, Gray V, Maden M, Thompson J, Saron H (2022) Interventions and methods to prepare, educate or familiarise children and young people for radiological procedures: a scoping review. Insights Imaging 13(1):1–33. https://doi.org/10.1186/s13244-022-01278-5
doi: 10.1186/s13244-022-01278-5
Cohen LL, Blount RL, Chorney J, Zempsky W, Rodrigues N, Cousins L (2017) Management of pediatric pain and distress due to medical procedures. In: Roberts MC, Steele RG (eds) Handbook of pediatric psychology. Guildford Press, New York, pp 146–160
Roback MG, Green SM, Andolfatto G, Leroy PL, Mason KP (2018) Tracking and reporting outcomes of procedural sedation (TROOPS): standardized quality improvement and research tools from the international committee for the advancement of procedural sedation. Br J Anaesth 120(1):164–172. https://doi.org/10.1016/j.bja.2017.08.004
doi: 10.1016/j.bja.2017.08.004
pubmed: 29397125
Chambers CT, Taddio A, Uman LS, McMurtry CM, Team H (2009) Psychological interventions for reducing pain and distress during routine childhood immunizations: a systematic review. Clin Ther 31:S77–S103. https://doi.org/10.1016/j.clinthera.2009.07.023
doi: 10.1016/j.clinthera.2009.07.023
Birnie KA, Noel M, Chambers CT, Uman LS, Parker JA (2018) Psychological interventions for needle‐related procedural pain and distress in children and adolescents. Cochrane Database Syst Rev 10. https://doi.org/10.1002/14651858.CD005179.pub4
Hoag JA, Karst J, Bingen K, Palou-Torres A, Yan K (2022) Distracting through procedural pain and distress using virtual reality and guided imagery in pediatric, adolescent, and young adult patients: randomized controlled trial. J Med Int Res 24(4):e30260. https://doi.org/10.2196/30260
Söderbäck M, Coyne I, Harder M (2011) The importance of including both a child perspective and the child’s perspective within health care settings to provide truly child-centred care. J Child Health Care 15(2):99–106. https://doi.org/10.1177/1367493510397624
doi: 10.1177/1367493510397624
pubmed: 21685225
Thunberg G, Johnson E, Bornman J, Öhlén J, Nilsson S (2022) Being heard - Supporting person-centred communication in paediatric care using augmentative and alternative communication as universal design: A position paper. Nurs Inq 29(2):e12426. https://doi.org/10.1111/nin.12426 . Epub 2021
Friedrichsdorf SJ, Eull D, Weidner CA (2016) A Children’s Comfort Promise: how can we do everything possible to prevent and treat pain in children using quality improvement strategies. Pediatric Pain Letter 18(3):26–30
Child Kind Hospitals. http://childkindinternational.org . Accessed 30 Mar 2023
Taddio A, Gudzak V, Jantzi M, Logeman C, Bucci LM, MacDonald NE, Moineddin R (2022) Impact of the CARD (Comfort Ask Relax Distract) system on school-based vaccinations: a cluster randomized trial. Vaccine 40(19):2802–2809. https://doi.org/10.1016/j.vaccine.2022.02.069
doi: 10.1016/j.vaccine.2022.02.069
pubmed: 35365344
Friedrichsdorf SJ, Postier A, Eull D, Weidner C, Foster L, Gilbert M et al (2015) Pain outcomes in a US children’s hospital: a prospective cross-sectional survey. Hospital Pediatr 5:18–26. https://doi.org/10.1542/hpeds.2014-0084
doi: 10.1542/hpeds.2014-0084
Cox AM (2021) How can children aged 8–12 years be involved in decision-making and consent processes in outpatient Child and Adolescent Mental Health Services (CAMHS)? An embedded case study. Thesis. University of Derby: Derby
Lombart B, De Stefano C, Dupont D, Nadji L, Galinski M (2020) Caregivers blinded by the care: A qualitative study of physical restraint in pediatric care. Nurs Ethics 27(1):230–246. https://doi.org/10.1177/0969733019833128
doi: 10.1177/0969733019833128
pubmed: 30975025
British Psychological Society (2012) Good Practice Guidelines: Evidence-based Guidelines for the Management of Invasive and/or Distressing Procedures with Children. https://doi.org/10.53841/bpsrep.2010.rep79
Loeffen EA, Mulder RL, Font-Gonzalez A, Leroy PL, Dick BD, Taddio A, Ljungman G, Jibb LA, Tutelman PR, Liossi C, Twycross A (2020) Reducing pain and distress related to needle procedures in children with cancer: A clinical practice guideline. Eur J Cancer 131:53–67. https://doi.org/10.1016/j.ejca.2020.02.039
doi: 10.1016/j.ejca.2020.02.039
pubmed: 32302949
Health Standards Organisation (2023) Pediatric pain management. https://healthstandards.org/news/hso-and-skip-release-the-first-pediatric-pain-management-standard/ . Accessed 5 Apr 2023
Khodyakov D, Grant S, Denger B, Kinnett K, Martin A, Peay H, Coulter I (2020) Practical considerations in using online modified-Delphi approaches to engage patients and other stakeholders in clinical practice guideline development. The Patient-Patient-Centered Outcomes Research 13(1):11–21. https://doi.org/10.1007/s40271-019-00389-4
doi: 10.1007/s40271-019-00389-4
pubmed: 31544219
World Health Organisation (2014) Decision-making for guideline development at WHO. https://www.who.int/publications/guidelines/Chp16_May2016.pdf . Accessed Mar 2021
Guthrie DM, Williams N, Beach C, Buzath E, Cohen J, Declercq A, Fisher K, Fries BE, Goodridge D, Hermans K, Hirdes JP (2022) A multi-stage process to develop quality indicators for community-based palliative care using interRAI data. PloS One 17(4):e0266569. https://doi.org/10.1371/journal.pone.0266569
Boyden JY, Feudtner C, Deatrick JA, Widger K, LaRagione G, Lord B, Ersek M (2021) Developing a family-reported measure of experiences with home-based pediatric palliative and hospice care: a multi-method, multi-stakeholder approach. BMC Palliat Care 20(1):1–18. https://doi.org/10.1186/s12904-020-00703-0
doi: 10.1186/s12904-020-00703-0
United Nations (1989) United Nations Convention on the Rights of the Child. United Nations, Geneva