[The world is turned upside down: How parents of children with spina bifida experience transition. A qualitative study]. / Die Welt wird auf den Kopf gestellt: Wie Eltern von Kindern mit Spina Bifida die Transition erleben.

The world is turned upside down: How parents of children with spina bifida experience transition. A qualitative study Abstract: Background: The coming of age of a child with spina bifida (SB) requires the transition from child-centred to adult-centred health care. This transition process (TP) calls for adjustments to the parental role, while health professionals assume a central position in accompanying the families. It is unclear how parents experience the TP in times of complex change and what support needs arise in the process. Aim: To understand the experiences of parents at different stages of the TP and derive the resulting support needs. Method: The qualitative study used semi-structured, guided interviews to explore the experiences of parents with a child with spina bifida before and during the transition process as well as after the transfer. The ten interviews were analysed using open and axial coding based on grounded theory according to Strauss & Corbin (1996). Results: The TP must be considered in the context of health as well as school and family. Parents experience the TP on a continuum of reorientation. This is accompanied by ambivalent feelings caused by the conflicting impulses of giving up responsibility and protecting their child. Conclusions: Health professionals should recognize the extent of change associated with the TP as well as parents' ambivalent feelings and support them accordingly. Continuous support, coordination and information by advanced professionals are important for parents' sense of security.

Corticosteroid fear in parents of children with atopic dermatitis.

Background: Topical corticosteroids (TCS) are the mainstay of therapy for paediatric atopic dermatitis (AD). The use of TCS is often met with fear by parents. Assessing this parental TCS fear in clinical practice is still lacking. Aim: The aim was to assess parental fear and beliefs about TCS. Furthermore, we evaluated the quality of life (QoL) of the family and the disease severity of affected children. Methods: We conducted an observational study with a cross-sectional design. Inclusion criteria were children aged 0 to 5 years with a diagnosis of AD and outpatient treatment. The outcome measures were parental fears and beliefs about TCS, assessed with the "Topical Corticosteroid Phobia Score" (TOPICOP), parental QoL evaluated with the "Family Dermatology Life Quality Index", and disease severity, assessed with the "Scoring atopic dermatitis" (SCORAD). Descriptive statistic was used to analyse the data. Results: The current study found that in 40 affected children, 25 (62.5%), suffered from mild AD, 12 (30%) children had moderate AD, and 3 (7.5%) children had severe AD. TCS fear among parents was notable (mean TOPICOP score 18.1, standard deviation (SD) 7.1). The QoL was moderately affected (mean FDLQI score 6.5, SD 2.8). Conclusions: Our study indicates that fear of TCS is prevalent. Furthermore, our data indicate that severity of TCS fear varies markedly between parents, ranging from parents with almost no fear to parents with high levels of fear. For effective education in clinical practice, the individual level of fear must be recognized and taken into account.

Parental experience of the neuromotor development of children with congenital heart disease: an exploratory qualitative study.

BACKGROUND: Children with severe congenital heart disease (CHD) are a group of children at risk for neurodevelopmental impairments. Motor development is the first domain to show a delay during the first year of life and may significantly contribute to parental concerns, stress, and difficulties in early child-parent attachment. Thus, the aim of the study was to better understand the wishes and concerns of parents of children with CHD and explore their experience of their children's neuromotor development in the first year of life. METHODS: In this qualitative study, fourteen families were recruited. Their children were aged 1-3 years and had undergone open heart surgery within the first 6 months of life. Semi-structured interviews were audio-recorded and transcribed. The data was explored within an expert group, and a qualitative content analysis was conducted using VERBI MAXQDA software 2020. The study was conducted in accordance with the COREQ checklist. RESULTS: Parents of children with CHD reported several burdens and needs. Parental burdens concerned the child's motor development, their own physical and psychological strain, and difficulties in communication with healthcare professionals. The needs, parents reported included supporting their child's motor development, a medical coordinator, and better communication between healthcare professionals and parents. During the first phase of their children's illness, parents underwent a dynamic transitional phase and expressed the need to rely on themselves, to trust their children's abilities, and to regain self-determination in order to strengthen their self-confidence. CONCLUSIONS: It is essential to involve parents of children with CHD at an early stage of decision-making. Parents are experts in their children and appreciate medical information provided by healthcare professionals. Interprofessional teamwork, partnering with parents, and continuous support are crucial to providing the best possible care for children and their families. Family-centred early motor intervention for CHD children might counteract the effect of parental overprotection and improve children's motor development and thus strengthen child-parent interaction. In future work, we aim to evaluate a family-centred early motor intervention for children with CHD developed on the basis of this qualitative study. TRIAL REGISTRATION: Not applicable.

[Experiences and support needs of parents of hospitalized children with multiple disabilities: a qualitative study]. / Erleben und Unterstützungsbedarf von Eltern hospitalisierter Kinder mit Mehrfachbehinderung. Eine qualitative Studie.

BACKGROUND: The hospitalisation of a multiple disabled child is stressful for parents because they continue to carry out demanding care procedures in hospital. Yet, systematic knowledge of the parental experience and of their support needs is missing. QUESTION: How do parents experience the hospitalisation, and which support needs do they identify for this period? Methods: Twenty-six parents (24 mothers, 2 fathers) of 24 children with multiple disabilities have participated in this qualitative study. Between 1 January 2011 and 1 September 2013, semi-structured interviews were conducted in a children's university hospital. A qualitative content analysis formed the basis for the analysis. RESULTS: "Concerns for the child's well-being" was central for the parents and focussed on the areas of "Pain", "Complications" and "Development". Perception of the child's well-being governs the extent of the "Parents' Work" and defines the parental "Support needs" to "Receive information and training", "Be known and experience continuity", "Be taken seriously and experience communion", "Be accompanied by experienced nurses", and "Be relieved and get organisational support". CONCLUSION: Parents work hard to safeguard the well-being of their hospitalised child with multiple handicaps. Care professionals can ease the parents' burden by promoting parental confidence in their child's welfare in hospital. This will be successful if continuity of care and competence are ensured, for instance if it is provided by nurses with Advanced Practice background.

[Experiences and needs of parents of hospitalised children with disabilities and the health professionals responsible for the child's health-care ­ A systematic review]. / Erfahrungen und Bedürfnisse von Eltern hospitalisierter Kinder mit Behinderung und den in der Betreuung verantwortlichen medizinischen Fachpersonen - Eine systematische Review.

BACKGROUND: Children with disabilities are more often hospitalized than healthy children and burden their parents additionally. Though the parents usually take care of the disabled child in the hospital, systematic knowledge on the experiences of these care-giving parents in hospital is missing in German-speaking countries. AIM: What are the experiences and needs described by parents of hospitalized children with disabilities as well as by health professionals responsible for the child's health-care and what are the implications for parental support? METHOD: A systematic review according to the PRISMA Statement was performed in the databases Pubmed/Medline, PsycINFO, CINAHL and EMBASE in January 2014. Fourteen publications were analysed thematically using content analysis. RESULTS: The literature identified confirmed the heightened burden of the parents and particularly of the nurses due to emotional and work-related stress. Moreover, the adjustment process, mainly of parents of frequently hospitalized children, was detected. Communication and organisation based on family-centred service can improve the parents' and the child's wellbeing. CONCLUSION: Considering the burden experienced by parents, their support must be of central concern for all health professionals. Nurses can support parents and thus the hospitalized child in the adjustment process by focused preparation and continuous attendance based on family-centred care. The latter must be supported by the management and the multidisciplinary team to tailor the competences and the organization accordingly.

The characteristics and efficacy of educational nurse-led interventions in the management of children with atopic dermatitis - An integrative review.

OBJECTIVE: This integrative review investigates the modalities, characteristics, and efficacy of educational nurse-led interventions for parents of children with atopic dermatitis (AD). METHODS: We conducted an integrative review with the following inclusion criteria: Quantitative, qualitative and mixed-method studies written in English or German and published between 1 January 2000 and 31 December 2021. We searched for entirely nurse-led interventions. RESULTS: Four RCTs, three pre-post studies without control groups, and one post-test study without control group met the inclusion criteria. Nurse-led interventions were found to have medium to large positive effect sizes on disease severity, and none to large positive effects on quality of life. There was significant heterogeneity across study designs with a wide variety in educational interventions and outcome measures used. The quality of most included studies was low. CONCLUSION: Nurse-led educational interventions for parents of children with AD are beneficial in reducing disease severity. However, it remains unclear, which main components of the nurse-led intervention are most effective. PRACTICE IMPLICATIONS: Based on the results of this review, we think that trained and qualified nurses who are part of the entire treatment of children with AD and do as well educational interventions have the greatest potential to improve outcomes.

[Living with bladder exstrophy - the patients' perspective]. / Trotz Blasenexstrophie ein gutes Leben haben: Untersuchung zum Leben und Umgang mit Blasenexstrophie.

Bladder exstrophy (BE) is a rare but severe urogenital malformation that requires complex clinical management. It can lead to physical restriction as well as to psychosocial and psychosexual malfunction. For the first time, this qualitative study describes the experiences of persons living with BE from childhood into adulthood. The primary goal was to explore the experiences of persons with BE in order to optimise treatment, care and counselling at the children hospital in Zurich. Semi-structured interviews were conducted with 4 women and 16 men (38 to 68 years). Using content analysis techniques, three major categories with two respectively four and five subcategories emerged from the data. The first category "having a good life despite BE" describes the perception of the affected persons to lead a life worth living despite BE. It was categorised by episodes and experiences that were repeated throughout the persons' life, such as "being in hospital", "living with symptoms", "being different", "showing oneself" and "gathering information". The second category "the affected ones" demonstrated that "parents" and "partners" were affected too and provided considerable support to the person with BE. The third category "the influencing factors" revealed that the perception of living with BE was influenced by individual and contextual factors. The results of this study illustrated that persons with BE can live a good life, despite repeated health-related challenges, if the support provided by their caregivers permits a positive attitude towards their illness. For this, patients with BE and their family members require continuous and highly competent treatment, care and education by an interdisciplinary team.

Effectiveness of a nurse-led preadmission intervention for parents of children with profound multiple disabilities undergoing hip-joint surgery: A quasi-experimental pilot study.

PURPOSE: The aim of this study was to assess the effectiveness of a family-centered care (FCC) intervention provided by an advanced practice nurse (APN) for parents of children with profound disabilities undergoing surgery. DESIGN AND METHODS: In a quasi-experimental design, we used the MPOC-20 to assess satisfaction with FCC and interviews to identify potential mechanisms for improving satisfaction. RESULTS: There was a positive effect on the MPOC-20 domain "general information," albeit with a small effect size (Cohen's d = 0.35). The interviewed parents expected additional support. PRACTICE IMPLICATIONS: Emphasis should be placed on providing comprehensive care coordination by an experienced APN. Shared care management is crucial in improving FCC.

When children with profound multiple disabilities are hospitalized: A cross-sectional survey of parental burden of care, quality of life of parents and their hospitalized children, and satisfaction with family-centered care.

PURPOSE: We aimed to assess parental burden of care, satisfaction with family-centered care, and quality of life (HRQoL) of parents and their hospitalized children with profound intellectual and multiple disabilities (PIMD), and determine the relationship among these factors. DESIGN: A cross-sectional study using printed questionnaires and qualitative questions was undertaken at a Swiss University Children's Hospital. RESULTS: The 117 parents (98 mothers, 19 fathers) studied indicated a substantial impact on burden of care and parental health-related quality of life. Significant correlations with the hospitalized children's well-being were rs = .408 for burden of care and rs -.368 for quality of life. Qualitative results showed parents struggling to safeguard their children and worrying most about the children's well-being. PRACTICE IMPLICATIONS: Health professionals need to be aware of parental burden and that the perception of the children's well-being and the parents' efforts determine their support needs. Easing parents' burden and fostering confidence in the hospitalized children's well-being requires coordination of care provided by advanced nurse specialists, with an institutional framework that clarifies parental collaboration.

Constipation prophylaxis in children undergoing orthopedic surgery: A quasi-experimental study.

PURPOSE: This study evaluated the effectiveness of constipation prophylaxis administered with the support of an advanced practice nurse. DESIGN: A quasi-experimental study with a historical control group of 112 pediatric (age 1-18) orthopedic patients and an intervention group of 59 patients was conducted in a surgical ward in Switzerland. RESULTS: The implementation of a standardized constipation prophylaxis led to an absolute risk reduction (27%) of constipation. Fisher's exact test showed a significant difference in the prevalence of constipation in the two samples, p = .001. PRACTICE IMPLICATIONS: Constipation prophylaxis is a necessity in pediatric orthopedics.