Bray, L.

Darcy, L.

Edwinson Månsson, M.

Forsner, M.

Karlsson, K.

Nilsson, S.

Rullander, A‐C.

English

Rullander, Anna-Clara

Forsner, Maria

Digitala Vetenskapliga Arkivet - Academic Archive On-line

Swedish translation of the iSUPPORT rights‐based standards to support paediatric patients having a clinical procedure

Rullander, Anna-Clara,

Bray, L.,

Darcy, L.,

Edwinson Månsson, M.,

Karlsson, K.,

Nilsson, S.,

Forsner, Maria,

Swepub

Swedish translation of the iSUPPORT rights‐based standards to support paediatric patients having a clinical procedure [Elektronisk resurs]

Rullander, A-C

Bray, L

Darcy, L

Edwinson Månsson, M

Karlsson, K

Nilsson, Stefan,

Forsner, M

Swedish translation of the iSUPPORT rights-based standards to support paediatric patients having a clinical procedure

Edge Hill University Research Information Repository

Acta Paediatrica. 2024;00:1–3.   | 1wileyonlinelibrary.com/journal/apaReceived: 26 August 2024  | Accepted: 28 October 2024DOI: 10.1111/apa.17488  B R I E F  R E P O R TSwedish translation of the iSUPPORT rights- based standards to support paediatric patients having a clinical procedure1  |  BACKGROUNDAccording to the Convention on the Rights of the Child, all chil-dren (0–18 years old) worldwide require special safeguards and care and have a right to good- quality health care. Children are exposed to healthcare procedures such as vaccinations, medi-cation, investigations, blood sampling and radiology and some children and young people can experience harm when undergo-ing these procedures in health care.1 The Convention is law in Sweden and, together with several Swedish laws, establishes that children have the right to be listened to in matters that concern them. Nevertheless, studies show that children are not always cared for in a child- friendly environment by healthcare profession-als with skills and competence to care for children. Additionally, clinical procedures are commonly carried out without seeking children's consent, sometimes using coercive measures such as restraint.2–4 Not being informed, prepared, listened to, or taken seriously can cause considerable harm to children, erode trust, and negatively affect future contact with health care, leading to fear of healthcare procedures4 and post- traumatic stress disorder later in life.5International collaborative rights- based standards to support paediatric patients during clinical procedures by reducing harm and establishing trust, referred to as iSUPPORT, have been initiated by Professor Lucy Bray and colleagues at Edge Hill University in the United Kingdom. These standards aim to ensure that the short- and long- term physical, emotional and psychological well- being of chil-dren and young people is central to any decision- making for medical and healthcare procedures. They outline good procedural practice with the intention to propose an approach to minimise any anxiety, distress and harm experienced by children when undergoing clinical procedures.1The standards were developed in English, a language shared by the international collaborative group. Therefore, the aim of this study was to translate the standards to Swedish while achiev-ing cross- cultural equivalence, concurrently with developing the standards.2  |  METHODSThe standards were developed by an international multi- professional collaboration consisting of a young person, nurses, doctors, psy-chologists, play specialists, radiographers and child rights specialists from several countries globally, including Sweden. The development underwent three phases consisting of group decision- making; con-sultation with children, young people and parents; and two online survey rounds.1 To ensure that the translation was cross- culturally equivalent, the translation process followed the stages described by Beaton et al.6 To ensure the inclusion of multiple perspectives, as recommended by Beaton et al.,6 the expert committee comprised the collaboration lead, the Swedish team (consisting of six research-ing paediatric nurses), and translators appointed by an authorised firm; the process entailed collaboration with the Swedish section of the Nordic network for children's rights and needs in health care—NOBAB, represented by a Children's Rights Strategist. The trans-lation process occurred across nine stages, concurrently with the development of the standards, as illustrated in Figure 1.Stage I: The first Swedish translation of the standards1 was car-ried out before Phase III (see Figure 1). The standards1 and survey were translated from English to Swedish by (a) a bilingual researcher in the Swedish team together with the rest of the team and in parallel by (b) a professional translator.Stage II: A group discussion in which the Swedish members of the expert committee discussed and synthesised translations a and b.Stage III: Back translation by a professional translator naive to the original English standards.1Stage IV: Expert committee review by Professor Bray and her team followed by discussions with the Swedish team. After some discussions, mainly concerning cross- cultural differences, a prelim-inary Swedish version was established.Stage V: Pre- testing was carried out as a survey in Phase III1 (see Figure 1). Survey answers from the Swedish participants were translated to English and analysed together with answers from the other participating countries, resulting in further discussions in the international collaborative group until the standards were finalised.1This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.© 2024 The Author(s). Acta Paediatrica published by John Wiley & Sons Ltd on behalf of Foundation Acta Paediatrica.Abbreviations: iSUPPORT, International collaborative rights-based standards to SUpport Paediatric Patients during clinical PrOcedures by Reducing harm and establishing Trust; NOBAB, nordic network for children’s rights and needs in health care.2  |    RULLANDER et al.Stage VI: Translation of the finalised standards1 from English to Swedish.Stage VII: Back translated by a professional translator naive to the standards.1Stage VIII: Expert committee review by Professor Bray and her team followed by discussions with the Swedish team.Stage IX: After several rounds, a final version of the Swedish standards was accepted and published on the iSUPPORT website.3  |  RESULTSThe synchronised process of developing the iSUPPORT standards while simultaneously translating and adapting them to the Swedish cultural context resulted in published Swedish versions of the standards for (a) children, young persons and parents and (b) healthcare professionals (see Swedish version—ISUPPORT (isupp ortch ildre nsrig hts. com)).4  |  DISCUSSIONThe Swedish team was integral to the development of these rights- based standards, and cultural aspects from all international col-laborators were considered throughout the process. Differences in laws as well as accepted clinical practice among the various countries involved became evident in the international discussions. The agreement was therefore reached that the standards should represent broad principles of good procedural practice rather than being intended to override or replace country- or discipline- specific laws, regulations, frameworks, policies, standard operating proce-dures and guidance. Kelly et al. emphasised the need to ensure that translated versions of standards are applicable in the contexts of the particular healthcare systems in which they are implemented.7 Consequently, the process of developing and translating the stand-ards demanded a carefully considered procedure to ensure cross- cultural equivalence. This procedure involved gathering viewpoints from national stakeholders such as young patients, parents, health-care professionals, researchers and associations advocating for chil-dren's rights in health care, to slightly adjust some terms in Swedish but without changing the meaning. One example of such a difficulty encountered during translation was with the term ‘standards’, which does not have an equivalent in Swedish but is central to the stand-ards' materials and resources. After discussions, the word ‘standards’ was included in the Swedish version, as it was previously known as the ‘NOBAB Standard’. The translated standards will be further tested for applicability using an audit from the collaboration.AUTHOR CONTRIBUTIONSA- C. Rullander: Conceptualization; writing – original draft; project administration; writing – review and editing; methodology. L. Bray: F I G U R E  1  Illustrating how the translation and cultural adaption was coordinated with the development of the iSUPPORT standards. In the middle: the parrallel proceses and how they are linked together. To the left: the development of the iSUPPORT standards by the international team. To the right: the translation and cultural adaption process in the Swedish team.    |  3RULLANDER et al.Writing – review and editing. L. Darcy: Writing – review and editing. M. Edwinson Månsson: Writing – review and editing. K. Karlsson: Writing – review and editing. S. Nilsson: Writing – review and edit-ing. M. Forsner: Writing – original draft; conceptualization; writing – review and editing; methodology; project administration.ACKNOWLEDG EMENTSWe wish to thank Professor Bernie Carter, Dr. Joann Kiernan, James Ridley, Ed Horowicz, Katie Dixon, Swedish NOBAB and, in particu-lar, Susanne Swärd and Proper English for their contribution to the translation process.A- C. Rullander1L. Bray2L. Darcy3M. Edwinson Månsson4K. Karlsson3S. Nilsson5,6,7M. Forsner11Department of Nursing, Faculty of Medicine, Umeå University, Umeå, Sweden2Faculty of Health, Social Care and Medicine, Edge Hill University, Ormskirk, UK3Department of Health Sciences, Faculty of Caring Sciences, Work Life and Social Welfare, University of Borås, Borås, Sweden4Department of Health Sciences, Faculty of Medicine, Lund University, Lund, Sweden5Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden6Centre for Person- Centered Care (GPCC), University of Gothenburg, Gothenburg, Sweden7Queen Silvia Children's Hospital, Sahlgrenska University Hospital, Gothenburg, SwedenCorrespondenceA- C. Rullander, Department of Nursing, Faculty of Medicine, Umeå University, Umeå, Sweden.Email: anna-clara.rullander@umu.seORCIDA- C. Rullander  https://orcid.org/0000-0002-3414-5481 L. Bray  https://orcid.org/0000-0001-8414-3233 L. Darcy  https://orcid.org/0000-0002-9383-0227 K. Karlsson  https://orcid.org/0000-0003-4080-6677    S. Nilsson  https://orcid.org/0000-0002-8847-9559 M. Forsner  https://orcid.org/0000-0003-1169-2172  R E FE R E N C E S 1. Bray L, Carter B, Kiernan J, et al. Developing rights- based stan-dards for children having tests, treatments, examinations and in-terventions: using a collaborative, multi- phased, multi- method and multi- stakeholder approach to build consensus. Eur J Pediatr. 2023;182:4707-21. doi:10.1007/s00431- 023- 05131- 9 2. Sahlberg S, Karlsson K, Darcy L. Children's rights as law in Sweden: every health- care encounter needs to meet the child's needs. Health Expect. 2020;23(4):860-9. doi:10.1111/hex.13060 3. Bray L, Carter B, Ford K, Dickinson A, Water T, Blake L. Holding children for procedures: an international survey of health professionals. J Child Health Care. 2018;22(2):205-15. doi:10.1177/1367493517752499 4. Forsner M, Cyrén M, Gerdin A, Rullander AC. It hurts to get forced: children's narratives about restraint during medical procedures. Paediatr Neonatal Pain. 2023;5(4):110-8. doi:10.1002/pne2.12093 5. Kassam- Adams N, Butler L. What do clinicians caring for children need to know about pediatric medical traumatic stress and the eth-ics of trauma- informed approaches? AMA J Ethics. 2017;19(8):793-801. doi:10.1001/journalofethics.2017.19.8.pfor1- 1708 6. Beaton DE, Bombardier C, Guillemin F, Bosi FM. Guidelines for the process of cross- cultural adaption of self- report measures. Spine. 2000;25(24):3186-91. doi:10.1097/00007632- 200012150- 00014 7. Kelly Y, O'Rourke N, Flynn R, O'Connor L, Hegarty J. Factors that in-fluence the implementation of (inter)nationally endorsed health and social care standards: a systematic review and meta- summary. BMJ Qual Saf. 2023;32(12):750-62. doi:10.1136/bmjqs- 2022- 015287

Swedish translation of the iSUPPORT rights‐based standards to support paediatric patients having a clinical procedure

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