To Örebro University

BACKGROUND: Patient-reported experience measures (PREMs) evaluate children's and young people's (CYP) perceptions of care. An important PREM developed with and for children was created in London, UK. Given the absence of similar North American instruments, we aimed to adapt, translate, and linguistically validate this instrument for use in a Canadian pediatric outpatient setting.

METHODS: A qualitative design was used, involving CYP and their parents/caregivers. Phase 1 entailed the English survey adaptation using think-aloud testing, revision, and cognitive testing. Phase 2 involved translation into French, revision and back-translation, and cognitive testing. Phase 3 encompassed a cross-validation of the English and French versions of the adapted instrument.

RESULTS: Fifty-five children in 3 age groups (8-11y, 12-13y, 14-16y) participated in creating the Canadian PREM. In Phases 1 and 2, 41 children participated in reviewing and updating specific questions in the instrument, resulting in adjustments and revisions based on their feedback. In Phase 3, 14 bilingual children linguistically validated the PREM instrument.

CONCLUSIONS: This study reports the development of the first Canadian PREM specifically tailored to children. By incorporating the perspectives and preferences of CYP in clinical practice, this approach has the potential to amplify the delivery of patient-centered care for this vulnerable population and ensure that the needs and voices of CYP are acknowledged.

LEVEL OF EVIDENCE: V, Therapeutic.

BACKGROUND: Preterm infants are at risk of complications due to their prematurity and Retinopathy of Prematurity (ROP) is one of them. To discover and treat ROP the preterm infants regularly undergo eye examinations. Nurses are responsible for the infants' care during this painful and stressful procedure.

AIM: The aim of this study was to explore nurses' perceptions of preterm infants' eye examinations.

METHODS: Data were collected through semi-structured interviews with 10 nurses experienced in participating in preterm infants' eye examinations. Data were analysed using a phenomenographic approach.

RESULTS: The results showed several perceptions of the eye examinations, and the analysis resulted in four descriptive categories: Infants are affected by the eye examination; Nurses have comprehensive overall responsibility for the infants; Parents are important to their infants, but they need support to fulfil their parental role, and Collaboration is important for the examination's favourable outcome. The category Nurses have comprehensive overall responsibility for the infants was regarded as the most comprehensive, covering all the other categories.

CONCLUSIONS: Nurses felt a great responsibility during a painful and stressful procedure for preterm infants. Infants' well-being could be better protected by interprofessional collaboration, improved nursing care and involved parents.

Aim: The aim of this study is to explore and compare experiences of pain management strategies for children with CP from the perspectives of children themselves and their parents.

Methods: A secondary inductive analysis of previously collected qualitative data was performed. Fourteen children with CP and one parent of each child were interviewed separately about the management of the child's pain. A dyadic data analysis was used to compare parents' and children's perspectives.

Findings: The main thematic categories of pain management identified were self-care, psychological strategies, physical interventions and professional treatment. Experiences described by the child and parent differed within all participating dyads but to different degrees. On a group level, children described more use of psychological strategies than parents did. Parents described more professional treatment strategies.

Conclusions: Parents and children described different experiences of pain management strategies, and both perspectives are needed to understand the child's situation.

Objectives: Pectus excavatum, or funnel chest, causes both physical and psychosocial issues, affecting health-related quality of life. However, the literature on how funnel chest affects daily living prior to corrective surgery is sparse. Therefore, the study aimed to describe the experiences of living with funnel chest prior to correctional surgery.

Materials and methods: The study had a qualitative exploratory design. Consecutive sampling was applied in which all individuals from a single cardiothoracic department scheduled for the minimally invasive repair of pectus excavatum were asked to participate. Nineteen participants, 17 men and two women, participated in the study. Individual telephone interviews were conducted from February 2020 until April 2021. The interviews were analyzed with qualitative content analysis using an inductive approach.

Results: The overall theme "To have or not to have a cavity in my chest, it could make a difference" was interpreted as the latent meaning of the participants' experiences. The theme included two subthemes with three categories each. The subtheme "The funnel chest puts a weight on my shoulders" describes the heavy burden the funnel chest places on the participants. The second subtheme, "This is me, but I want to change my future", describes that participants see the funnel chest as a part of themselves; nevertheless, they look forward to surgery and a life without it.

Conclusion: The results emphasize the heavy burden funnel chest causes and the great limitations it places on the individual. It also highlights the importance of surgery and the hope for a better future for individuals with funnel chest.

Purpose: To describe experiences of fear, coping, and support in 10-17-year-old children under treatment for acute lymphoblastic leukaemia (ALL).

Methods: A longitudinal descriptive qualitative design was adopted. Ten children participated in one to three interviews each (24 interviews in all). Interviews were analysed using a matrix-based qualitative method.

Results: The variety of fears described related to uncertainty, pain and medical procedures, bodily changes and loss of control, complications, professionals' attitudes, affected school results, and social isolation. Children used various strategies to deal with fear: some more general, to cope with the whole situation, and others more related to specific events such as treatment and tests. The most reported strategies we labelled Accepting the situation, Positive thinking, and Being an active agent. Less favourable strategies were also reported. Health care professionals, families, and friends offered valuable, but different kinds of, support.

Conclusions: Children aged 10 to 17 undergoing treatment for ALL experience various fears. Each experience is individual and changes over time, but there are common patterns. Most children used problem-solving or emotional-regulation strategies, but withdrawal was also reported. Even children who can deal with fear need support from their health care professionals, families, and friends.

Background: Hearing loss increases with age and due to increased life expectancy there is an increase in the number of individuals living with hearing loss. Older people with hearing loss residing in nursing homes are often dependent on healthcare professionals to help them with their hearing aids.

Objective: The aim of the study was to translate and test the psychometric properties of a Swedish version of a Norwegian questionnaire and to assess healthcare professionals' self-reported knowledge, experience, skills, competence, and information needs pertaining to residents' hearing loss and hearing aids in the Swedish context.

Materials and Methods: A Norwegian questionnaire was translated and adapted, and thereafter distributed to healthcare professionals in nine nursing homes in mid Sweden between 2020 and 2021, and 313 questionnaires were returned.

Results: An exploratory factor analysis demonstrated adequate factorial structure in six factors, satisfying construct validity and internal consistency for the Swedish version. A confirmatory factor analysis showed a satisfactory model fit. Healthcare professionals reported having the skills required for handling hearing aids, but reported lower scores for having received information about hearing aids, taking initiatives to refer residents to hearing healthcare units, and checking for earwax. Registered nurses generally reported lower perceived knowledge and practical skills concerning hearing aids. Seventy-seven percent of the total group reported a need for information regarding hearing aid maintenance.

Conclusion: Healthcare professionals reported that the majority of nursing home residents need help with their hearing aids, but only a minority of these professionals had received education on hearing loss and training in hearing aid maintenance. Enrolled nurses and care assistants demonstrated higher levels of competence in handling hearing aids compared to registered nurses. In order to ensure safe and effective care, as well as facilitate communication among older adults with hearing loss, healthcare professionals need appropriate education and training.

PURPOSE: To explore pain experiences of children with cerebral palsy, and how it influences their everyday life.

METHOD: Fourteen children with CP between eight and seventeen years old were included, using a purposeful sampling strategy. They had different experiences of pain, and different degrees of physical and cognitive impairments. Sixteen individual semi-structured interviews were carried out, and analyzed using inductive thematic analysis.

RESULTS: Data analysis resulted in the main theme "I have to obey my pain" and four themes were identified. Experiences regarding pain varied ("My pain is mine alone"). Both pain itself and the use of cognitive strategies to cope with pain involved a mental struggle ("Pain brings me down"). The children had to make adjustments to manage their pain ("I want to participate, but I have to rest"). The most important help was to be understood, but adults also provided valuable help with interventions like stretching, medication and adjustment of activity levels ("Others can help me").

CONCLUSION: Pain was a determining feature in the lives of these children with CP. The wide variety of experiences and challenges emphasized the need for tailored management strategies developed together with each child and their parents.

IMPLICATIONS FOR REHABILITATION

• Children with cerebral palsy had varied experiences of pain, and health professionals need to tailor their pain management approaches to the individual child.
• Health services should offer pain education to expand children's repertoire of pain management strategies.
• When a child's pain influences their daily activities, health services must ensure that the school is informed of the child's situation, and able to make necessary adjustments.
• Health professionals should strive to include children's own descriptions whenever possible to make sure children feel heard and believed.
• Even children with communicative and cognitive impairments were able to self-report when necessary adjustments in the communication situation were made.

PURPOSE: To describe how parents with deafblindness experience parenting and family life.

MATERIALS AND METHODS: This a qualitative interview study. Fourteen parents with deafblindness were interviewed. Most were mothers (n = 10), with ages ranging between 33 and 57 years (mean 46 years). Interviews were transcribed, and the analysis was done using inductive qualitative content analysis.

RESULTS: The analysis resulted in the overarching theme, 'Living family life as a parent with deafblindness is not a walk in the park, but it is rewarding', and three subthemes, 'Being a competent parent despite having deafblindness', 'Needing support to fulfil my parental obligations' and 'Parenting is a struggle due to my deafblindness'. The results encompass many experiences and feelings and illustrate the complex reality of these parents in their parental role and family life.

CONCLUSION: The parents expressed their joy in being parents, but these feelings were intertwined with negative aspects of being unable to take on the desired responsibility or not receiving the necessary support. When requested, tailored support should be offered from social services, health care and rehabilitation services in order for parents with deafblindness to take on the parental responsibility they want and to be able to actively participate in family life.

Purpose: To explore experiences of parenting a child with CP and pain.

Method: Fourteen mothers and one father of children (9-16) with CP were included. All children had pain regularly, but the frequency and intensity of their pain experiences varied. Their motor function varied from GMFCS level I to V. Cognitive abilities varied from normal to moderate cognitive deficits. All children could express themselves verbally. Semi structured individual interviews were carried out, and results were developed using inductive thematic analysis.

Results: The analysis resulted in the main theme "My child's pain is just one piece of a complex jigsaw puzzle". The main theme was developed by four mutually exclusive, but related themes: "My child's struggle burdens me", "Pain and CP direct our everyday life", "I want to be in control, but cannot always be" and "We are the only ones who understand the complexity".Conclusion: Parents of children with CP experience pain as one aspect of a bigger picture. They need help and support to cope with their child's pain, and professional helpers need to address the complexity pain is a part of.

IMPLICATIONS FOR REHABILITATION: Parents of children with cerebral palsy (CP) experience their child's pain as one piece in a jigsaw puzzle, and counseling needs to address the complexity rather than the separate parts of the picture.Health professionals should support parents in evaluation and management of their child's pain, as a feeling of competence in pain management is important to reduce parental stress.Health professionals should inform themselves about the life situation of parents whose child with CP has pain, and encourage them to seek practical support and apply for relevant support schemes that can make their everyday life easier.Parents of children with CP should be encouraged to take part in a diagnosis-specific support group, where they can meet with others in a similar situation, in order to reduce their feeling of being alone with their challenges.

BACKGROUND: There is no national, validated, generic patient-reported experience measure (PREM) for children under 15 years of age in Sweden. A recent cross-sectional study found no consensus in how children's voices are heard in paediatric health care, as well as a lack of validated questionnaires.

AIM: The aim of this study is to translate, adapt and validate the six versions of the Children's and Young People's PREM for use in a Swedish health care context.

DESIGN: An exploratory sequential mixed-method design including cognitive interviews and content validity index (CVI) was used. The interviews focused on evaluating children's understanding of the questionnaire, and the CVI was used to further adjust the relevance of the questionnaire.

PARTICIPANTS: A convenience sample of 62 children participated in the cognitive interviews and an additional convenience sample of 42 children was included in the CVI testing. The children, aged 8-16 years, were attending routine visits at paediatric departments in a county hospital and a children's hospital in the mid-Sweden region between October 2020 and June 2022.

RESULTS: The translation, adaptation and validation process identified several issues regarding the understanding of the questionnaire in a Swedish context. Adaptations were made based on issues related to context, wording and the structure of the questions. CVI testing resulted in the removal of 3-10 questions in each of the different versions of the questionnaire.

CONCLUSION: The study has resulted in six face- and content-validated Swedish versions of the questionnaire ready for pilot testing. Although the versions of the original questionnaire were developed in collaboration with children in the United Kingdom, this did not mean that they could automatically be used in a Swedish health care context. This study confirms the importance of a rigorous process of adaptation and validation to ensure quality and applicability to children accessing health care in different countries.

PATIENT OR PUBLIC CONTRIBUTION: Children's views have guided the development of the original instrument and its adaptation to the Swedish health care context. Due to the strong patient involvement in the process of developing the Swedish versions of the questionnaire, the research group made a pragmatic decision to have no other patient contribution in the study.