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

According to the Convention on the Rights of the Child, all children (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, medication, investigations, blood sampling and radiology and some children and young people can experience harm when undergoing 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 professionals 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.5 International 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 children 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.1 The 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 achieving cross-cultural equivalence, concurrently with developing the standards. The standards were developed by an international multi-professional collaboration consisting of a young person, nurses, doctors, psychologists, play specialists, radiographers and child rights specialists from several countries globally, including Sweden. The development underwent three phases consisting of group decision-making; consultation 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 researching 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 translation 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 carried 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.1 Stage 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 preliminary 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.1 Stage VI: Translation of the finalised standards1 from English to Swedish. Stage VII: Back translated by a professional translator naive to the standards.1 Stage 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. The 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 (isupportchildrensrights.com)). The Swedish team was integral to the development of these rights-based standards, and cultural aspects from all international collaborators 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 procedures 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 standards demanded a carefully considered procedure to ensure cross-cultural equivalence. This procedure involved gathering viewpoints from national stakeholders such as young patients, parents, healthcare professionals, researchers and associations advocating for children'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 standards' 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. A-C. Rullander: Conceptualization; writing – original draft; project administration; writing – review and editing; methodology. L. Bray: 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 editing. M. Forsner: Writing – original draft; conceptualization; writing – review and editing; methodology; project administration. We wish to thank Professor Bernie Carter, Dr. Joann Kiernan, James Ridley, Ed Horowicz, Katie Dixon, Swedish NOBAB and, in particular, Susanne Swärd and Proper English for their contribution to the translation process.