To Örebro University

BACKGROUND: Using Patient Reported Experience Measures (PREM) is one way of assessing children's perspectives in identifying areas for improvement in paediatric care. The generic questionnaire Children and Young People - Patient Reported Experience Measure (CYP-PREM) has been adapted to the Swedish paediatric healthcare context to enable children to evaluate their care on issues important to them.

AIM: The aim of the study was to pilot the Swedish versions of the CYP-PREM questionnaire in paediatric care. METHODS: This pilot study used a descriptive cross-sectional design. Children aged 8-16 years were included when discharged from an inpatient ward or after an outpatient visit. The participating children were asked to complete two questionnaires: Swedish CYP-PREM (Swe-CYP-PREM) appropriate for their inpatient or outpatient visit and the age of the child, and a study-specific questionnaire to evaluate the children's opinions of the Swe-CYP-PREM.

FINDINGS: Out of the 319 invited children, 296 agreed to participate, of whom 189 children submitted the questionnaires, resulting in a response rate of 59.5 %. The Swe-CYP-PREM was well accepted by the target population and considered to provide good data completeness and few response errors. The Swe-CYP-PREM captured a range of experiences from children's healthcare visits, with predominantly positive responses. In the open-ended question about what was good or bad about the visit, 66 children had provided comments, which added value to the closed questions in the questionnaire.

CONCLUSION: The Swe-CYP-PREM can be used in clinical practice to enable children to voice their experiences after a healthcare visit.

Highlights

•  Internet-delivered obesity treatment can help change lifestyle habits

•  Expectations for weight loss were not met

•  Life circumstances made it difficult to commit to treatment

•  Internet-delivered treatment is not for everyone.

Until recently the area of family life when a parent is deafblind has rarely been studied. In this chapter, we discuss findings from the sparse literature on this topic. We will focus on self-rated health, sense of coherence, family climate, and experiences of everyday life of various family members in families where a parent is deafblind, as well as on support needs. The literature shows that all family members are affected by the deafblindness to varying degrees. Thus, all family members should be asked about their individual needs, as well as the needs of the entire family, for professionals to tailor supportive interventions aiming at a healthy life. © Oxford University Press 2025.

BACKGROUND: Early mobilisation is advocated after colorectal surgery. Mobilising patients 30 min after arrival to the post-anaesthesia care unit has been shown to be feasible; however, before implementation in clinical care, the experiences of patients and healthcare professionals must be investigated. Thus, this study aims to explore patients' and healthcare professionals' experiences of immediate mobilisation.

METHODS: A total of 41 patients from the intervention group of a randomised control trial investigating the effects of immediate mobilisation were included and interviewed individually between October 2017 and June 2019. Five healthcare professionals working with the intervention were also interviewed individually during fall 2018 to spring 2019. The data analyses of the two samples were conducted separately, using inductive qualitative content analysis.

RESULTS: Three themes were identified from the patients' interviews: 'The body cannot keep up', describing challenges, such as burdensome symptoms, reluctance and fear that mobilisation could be harmful; 'Being in good hands', referring to receiving individual support from healthcare professionals when being mobilised and thus feeling safe; and 'A first step towards recovery', describing patients' readiness for immediate mobilisation with fewer postoperative symptoms, while recognising the benefits and feeling satisfied. An overarching theme was identified from the healthcare professionals' interviews - 'Balancing gains and challenges', which describes likely benefits to patients but also notes that mobilisation immediately after surgery is resource intensive. The professionals described their initial concerns about patients' wellbeing and safety and the adapted facilities needed for immediate mobilisation to be smooth.

CONCLUSION: Immediate mobilisation after elective colorectal surgery was found to be both beneficial and challenging by patients and healthcare professionals; it requires skilled staff, sufficient resources, adapted facilities, and clear mobilisation procedures and efforts tailored to the patients' individual abilities.

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.

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.