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Background: There is limited qualitative research focussed specifically on what it is like for children and young people with intellectual disabilities coming into hospital, with much of the evidence-base being about those with Autism Spectrum Condition or adults with intellectual disabilities. Aim: To share rich detail of the emotional and physical impact on children and young people with intellectual disabilities of attending hospital, from their own and their parent's perspective. Methods: Talking Mats interviews, sticker survey and photography with children and young people with intellectual disabilities, and in-depth interviews, hospital diaries and photography with their parents. Results and Conclusions: The multiple and compounding layers of complexity surrounding hospital care of children and young people with intellectual disabilities resulted in challenges associated with loss of familiarity and routine, undergoing procedures, managing sensory overload, managing pain and having a lack of safety awareness. An individualised approach to their care is needed.

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To explore experiences, expectations, and involvement of children and young people (CYP) in decision-making for selective dorsal rhizotomy (SDR) surgery, post-operative physiotherapy treatment and outcomes. A qualitative study design using one to one interviews. Five CYP (2 girls and 3 boys) participated, and interviews lasted between 45 min and 2 h. Data were analyzed using thematic analysis. Children and young people are reliant on their parents to make decisions and inform them of the SDR process. Experiences of living with cerebral palsy and its management are centered on their routine social, psychological, and physiological challenges. Individual characteristics and attributes of CYP have an impact on how they cope with the rehabilitation burden and adjust to their changing levels of function and participation. Although CYP reported that SDR offers them a greater 'freedom to choose' in how they participate in daily life, further consideration is required to meet their psychosocial needs, particularly in preparing for SDR and adjusting afterwards. [ABSTRACT FROM AUTHOR]

Background: Non‐invasive ventilation (NIV) for sleep‐disordered breathing (SDB) in children and young people (CYP) can result in multiple health outcomes; however, adherence to NIV can be challenging. Suboptimally treated SDB may increase the risk of adverse consequences. Placing children's and parents' goals at the core of their SDB treatment may support adherence to NIV. To identify these health outcomes, it is necessary to gain a greater understanding of CYP's experiences of using NIV, whether they perceive any benefits from NIV use, as well as the outcomes that their parents and NIV staff identify as important. Methods: Semi‐structured qualitative interviews were conducted with nine CYP (aged 4–16 + years), 13 parents and nine healthcare professionals (HCPs); verbatim transcripts were analysed using Framework Analysis. Results: CYP predominantly reported an improvement in levels of energy, focus and ability to concentrate whereas parents also identified outcomes of mood and behaviour. The majority of children showed understanding of the reasons for being prescribed NIV. A subset of children did not notice their SDB. The health outcomes identified by HCPs and parents that could result from improved overnight gas exchange are subjective measures that rely on parent and child report. Measuring these health outcomes focussed on the impact of improved sleep rather than measuring improved sleep itself. Conclusions: It is important for HCPs administering NIV to ascertain whether CYP have noticed any of their sleep‐disordered breathing symptoms and any improvements from using NIV, including the relationship between benefits and side effects. Focussing on promoting understanding for CYP who are unable to link their wellbeing to their previous night's sleep may be futile and HCP strategies should concentrate on the process of tolerating the device. Parents, CYP and HCPs should collaborate to identify treatment goals specifically tailored for the child and monitor any progress against these goals. [ABSTRACT FROM AUTHOR]

Background: Children and young people with learning disabilities experience poor health outcomes and lengthier hospital admissions than those without learning disabilities. No consistently applied, systematic approach exists across the NHS to identify and record this population. This paper describes practices in English hospitals to identify children and young people with learning disabilities. Method: "Interviews"--65 NHS staff. "Questionnaire"--2,261 NHS staff. Conducted across 24 NHS hospitals in England. Results: No standardized approach exists to identify children or young people with a learning disability or for this information to be consistently recorded, communicated to relevant parties within a hospital, Trust or across NHS services. Staff reported a reliance on parents to inform them about their child's needs but concerns about "flagging" patients might be a significant barrier. Discussion: Without an integrated systematic way across the NHS to identify children with learning disabilities, their individual needs will not be identified.

Paediatric cardiology practitioners and related experts report unusually young ages when they begin to inform children about their non‐urgent heart surgery and begin to respect children's consent or refusal. Research methods included observations in two paediatric cardiology units, audio‐recorded interviews with 45 experts, and qualitative data analysis. Significantly younger ages were cited than are usually recommended in the clinical and legal literature. Interviewed practitioners took seriously children's consent to or refusal of a heart transplant from around 6 years, and a child's firm refusal of induction of anaesthesia from around 4 years, when surgery might be postponed. [ABSTRACT FROM AUTHOR]

A growing body of conceptual evidence over the last decade has increased our understanding of parents' experiences of having an infant with complex congenital heart disease. These concepts include parents' feelings of uncertainty, fear, excitement, and mastery. However, little is known about parents' experiences, confidence, and knowledge acquisition during transition from hospital to home with their infant after the first stage of complex cardiac surgery. A theoretical framework to assess, plan and implement child and family centered care would assist children's cardiac nurses responsible for parental education, discharge planning and coordination. To explore parents' experiences of the transition from hospital to home with their infant, following the first stage of cardiac surgery. A prospective mixed methods longitudinal design. Semi-structured interviews were undertaken, including administration of the Maternal Confidence Questionnaire at four timepoints: before discharge following stage one cardiac surgery (T0), 2 weeks' post discharge (T1), 8 weeks' post discharge (T2) and after stage two surgery (T3). Qualitative data were thematically analyzed. Descriptive statistics were used to characterize the sample and non-parametric repeated measures analysis of variance was used to analyze changes over time in maternal confidence scores. Sixteen parents of 12 infants participated. Four "patterns of transition experience" emerged, the fourth "Mastery", is discussed in this paper. Mastery can be contextualized in terms of the parents' journeys of knowledge construction, gaining confidence and reflection. Learning was dynamic and transformational, but successful learning and acquisition of knowledge was also dependent upon the parents' ability to absorb, integrate and adjust at any given time. Confidence at T0 was significantly lower than at T1 (p =.011), T2 (p =.018) and T3 (p =.012). There were no significant differences between scores at T1, T2 and T3. Liminality, as a concept, described the between and betwixt time that parents experienced as they were preparing for discharge from hospital; excitement to be going home balanced with the fear of being alone and confidence in looking after their fragile infant. Parents of infants with complex congenital heart disease obtain knowledge, confidence, and mastery dependent upon their transition experience and their personal journey through pre-liminal, liminal, and post-liminal phases of discharge from hospital to home. A conceptual framework "Parenting through Transitions – hospital to home" emerged that could assist in structuring assessment of parents' knowledge and support needs within a coordinated discharge process. Identifying individualized support would promote adaptation and adjustment during transition from the pre to post liminal phase, following their infant's first stage of complex cardiac surgery. Parents learning was dynamic and transformational, learning opportunities overlapped transitional phases of their infant's journey, but successful learning and acquisition of knowledge was also dependent upon the parents' ability to absorb, integrate and adjust at any given time. The transition from hospital to home and traversing the physical boundary of leaving the hospital for the first time with their infant (liminal phase), was loaded with emotionally traumatic experiences that could not be separated from the transition that was being explored within this study. Adjusting to the new situation, developing confidence over time, and becoming comfortable as they mastered new skills, demonstrated that some of these parents could pass through that liminal space to mastery of a new normal (post-liminal phase), which encompassed competence, integration, and comfort. [ABSTRACT FROM AUTHOR]

Adhering to the immunosuppressive regimen remains one of the biggest challenges for children and adolescents after kidney transplantation. The first paper on nonadherence, co‐authored by Dr. Fine, appeared in Pubmed over 45 years ago. Since then, many clinicians and researchers tried to better understand nonadherence and are looking for effective ways to support young people in implementing the complex medication regimen in their daily lives. As a tribute to Dr. Fine, we conducted a comprehensive review providing an overview of adherence‐enhancing interventions in the field of pediatric kidney transplantation, thereby focusing on strategies that not only are effective but can also be embedded in daily clinical practice successfully and sustainably. This overview is preceded by a discussion about how to find out who is in need of supportive interventions. We will also argue that interventions should already start before pediatric kidney transplantation and discuss how to decide whether or not a young patient with nonadherence‐induced graft loss should undergo retransplantation. We hope this comprehensive overview will rekindle the hope that we can finally turn the tide and beat one of pediatric kidney transplantation's main enemies. [ABSTRACT FROM AUTHOR]

Introduction: With improved survival in pediatric solid organ transplantation (SOT) care has focused on optimizing functional, developmental, and psychosocial outcomes, roles often supported by Allied Health and Nursing professionals (AHNP). However, there is a scarcity of research examining frameworks of clinical practice. Methods: The International Pediatric Transplant Association AHNP Committee developed and disseminated an online survey to transplant centers as a quality improvement project to explore AHNP practice issues. Participant responses were characterized using descriptive statistics, and free‐text comments were thematically analyzed. Responses were compared across professional groups; Group 1: Advanced Practice Providers, Group 2: Nursing, Group 3: Allied Health. Results: The survey was completed by 119 AHNP from across the globe, with responses predominantly (78%) from North America. Half of respondents had been working in pediatric transplant for 11+ years. Two‐thirds of respondents were formally funded to provide transplant care; however, of these not funded, over half (57%) were allied health, compared to just 6% of advance practice providers. Advanced practice/nursing groups typically provided care to one organ program, with allied health providing care for multiple organ programs. Resource constraints were barriers to practice across all groups and countries. Conclusion: In this preliminary survey exploring AHNP roles, professionals provided a range of specialized clinical care. Challenges to practice were funding and breadth of care, highlighting the need for additional resources, alongside the development of clinical practice guidelines for defining, and supporting the role of AHNP within pediatric SOT. Professional organizations, such as IPTA, can offer professional advocacy. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Dermatological conditions are common in childhood and, in their more severe forms, can cause pain, disability and social marginalisation. Despite attachment being a known factor contributing to psychological and physiological development in childhood and several adult studies showing associations between attachment and dermatology outcomes (Tomas‐Aragones, 2018), attachment in young dermatology patients has not been investigated. Objectives: This study examined if (1) 8–16‐year‐olds with chronic dermatological conditions were more likely to show attachment insecurity than general population peers; (2) attachment style was linked to psychological functioning; and (3) facial involvement was associated with attachment insecurity. Method: One hundred and twenty‐two 8–16‐year‐olds attending a specialist paediatric dermatological service were compared on the Child Attachment Interview (CAI) to general population data. The Strengths and Difficulties Questionnaire (SDQ) was used to measure psychosocial functioning. Results: The dermatology group was significantly more likely to be insecurely attached than their general population peers (χ2[1] = 4.76, p <.05). The secure group self‐reported significantly better psychological functioning on all indices compared with the insecure group (Total Difficulties: F[1,89] = 15.30, p <.001). There were no significant differences between secure and insecure groups on parent‐reported psychological measures (Total Difficulties: F[1,94] = 0.67, p =.42). Children with facial involvement were not significantly more likely to be insecurely attached. Conclusions: Increased risk of attachment insecurity, particularly in the anxious pre‐occupied category, as well as an association between attachment and psychosocial functioning resonated with adult studies suggesting that further research about the role of attachment with young dermatology patients is warranted. [ABSTRACT FROM AUTHOR]

Background: There is limited qualitative research focussed specifically on what it is like for children and young people with intellectual disabilities coming into hospital, with much of the evidence‐base being about those with Autism Spectrum Condition or adults with intellectual disabilities. Aim: To share rich detail of the emotional and physical impact on children and young people with intellectual disabilities of attending hospital, from their own and their parent's perspective. Methods: Talking Mats interviews, sticker survey and photography with children and young people with intellectual disabilities, and in‐depth interviews, hospital diaries and photography with their parents. Results and Conclusions: The multiple and compounding layers of complexity surrounding hospital care of children and young people with intellectual disabilities resulted in challenges associated with loss of familiarity and routine, undergoing procedures, managing sensory overload, managing pain and having a lack of safety awareness. An individualised approach to their care is needed. [ABSTRACT FROM AUTHOR]