Central nervous system tumours constitute 25% of all childhood cancers; more than half are located in the posterior fossa and surgery is usually part of therapy. One of the most disabling late effects of posterior fossa tumour surgery is the cerebellar mutism syndrome (CMS) which has been reported in up to 39% of the patients but the exact incidence is uncertain since milder cases may be unrecognized. Recovery is usually incomplete. Reported risk factors are tumour type, midline location and brainstem involvement, but the exact aetiology, surgical and other risk factors, the clinical course and strategies for prevention and treatment are yet to be determined. This observational, prospective, multicentre study will include 500 children with posterior fossa tumours. It opened late 2014 with participation from 20 Nordic and Baltic centres. From 2016, five British centres and four Dutch centres will join with a total annual accrual of 130 patients. Three other major European centres are invited to join from 2016/17. Follow-up will run for 12 months after inclusion of the last patient. All patients are treated according to local practice. Clinical data are collected through standardized online registration at pre-determined time points pre- and postoperatively. Neurological status and speech functions are examined pre-operatively and postoperatively at 1–4 weeks, 2 and 12 months. Pre- and postoperative speech samples are recorded and analysed. Imaging will be reviewed centrally. Pathology is classified according to the 2007 WHO system. Germline DNA will be collected from all patients for associations between CMS characteristics and host genome variants including pathway profiles. Through prospective and detailed collection of information on 1) differences in incidence and clinical course of CMS for different patient and tumour characteristics, 2) standardized surgical data and their association with CMS, 3) diversities and results of other therapeutic interventions, and 4) the role of host genome variants, we aim to achieve a better understanding of risk factors for and the clinical course of CMS - with the ultimate goal of defining strategies for prevention and treatment of this severely disabling condition. Clinicaltrials.gov : NCT02300766 , date of registration: November 21, 2014.

Families often prefer home care to hospital care, and home-care services for ill children are increasing worldwide with limited knowledge of families’ needs during curative and palliative home care. The aim of this study was to elucidate family members’ lived experience when a sick child received home care from county-based primary healthcare services. A descriptive qualitative design was chosen and 12 families including sick children receiving home care and their mothers, fathers and siblings in the south of Sweden were interviewed between December 2015 and January 2017. The transcribed interviews were analysed using a hermeneutic phenomenological approach. The family members’ lived experience was described in three essential themes: “Strengthening family life” relates to how home care induced freedom and luxury in a strained period of life and supported the families’ everyday life. Usual social activities and relations were maintained as time and energy was saved when receiving home care. “Promoting health” relates to how the family members’ burden of illness decreased as the child's signs of illness alleviated and the well-being of the whole family increased when the child received care in the home. This provided a peaceful respite for family members’ psychosocial recovery. The third theme, “Creating alliances,” relates to the importance of creating trustful alliances for communicating participation in care. If trustful alliances were not created, parents felt an overwhelming responsibility and family members became anxious. The findings suggest that care in the family's home is a useful complement to hospital care. Home care should be given with close attention to family members’ needs and conditions, as positive effects of home care might be jeopardised when expectations and possibilities are not successfully shared.

Aims and objectives: To explore healthcare professionals’ conceptions of caring for sick children in home care services.Background: Families often prefer home care to hospital care, and the number of home care services for children is increasing. Caring for children at home has been recognised as challenging for healthcare professionals in home care services used to providing care predominately for adults.Design: An inductive qualitative design.Method: Seven focus group interviews were performed with 36 healthcare professionals from multidisciplinary home care services. Data were analysed stepwise using a phenomenographic analysis.Results: Three description categories emerged: “A challenging opportunity”, “A child perspective”, and “Re‐organise in accordance with new prerequisites.” Providing home care services for children was conceived to evoke both professional and personal challenges such as feelings of inadequacy and fear and professional growth such as increased competence and satisfaction. Conceptions of whether the home or the hospital was the best place for care differed. Adapting to the child's care was conceived as important. Cooperation with paediatric departments and a well‐functioning team work were important organisational aspects.Conclusion: Providing home care for children was a challenging but rewarding task for healthcare professionals used to care for adults. To provide care with a child perspective was experienced as important even though there were conflicting conceptions of how this should be done. Close cooperation with paediatric departments and teamwork were prerequisites that make up for the low number of paediatric patients and facilitate confidence and competence.Relevance to clinical practice: A sufficient number of referred children and enabling healthcare professionals to be part of the re‐organising and implementation processes might facilitate the home care services for sick children. Enough time and good teamwork must be emphasised. Early referrals, continuous cooperation with paediatric clinics complemented with individualised support when a child is referred is desirable.

Aims and objectives: To describe ways in which children's best interests were observed to be expressed in paediatric settings during their hospital visit.Background: The best interests of the child are embodied in national and international legal systems, although the definition remains problematic. The child's limited autonomy mandates duty bearers to have both a child perspective and the child's perspective when considering what the best interest of the child entails in care situations.Design: A qualitative descriptive study with overt, non‐participant observations fulfilling the COREQ criteria.Methods: Thirty‐two observations of interactions between children aged 2 to 17 years with both acute and chronic conditions, their parents and healthcare professionals were conducted at three paediatric hospitals in Sweden. Inductive and abductive reasoning were used in the content analysis of data, which followed the identification, coding, categorising and abstraction of observed patterns of the best interest of the child.Results: Findings reveal facilitating and obstructing factors for the child's best interests to be safeguarded in healthcare situations. Children were guided in or hindered from exercising their competence. The observations showed a variation in actions taken by both parents and healthcare professionals to safeguard the best interests of the child.Conclusions: Determining the best interest of the child requires a case‐by‐case basis, as it is context‐dependent, situational, flexible and dependent on all actors involved and actual decisions made.Relevance to clinical practice: Healthcare professionals’ actions can facilitate or obstruct observed expressions of the child's best interest. It is essential to enhance healthcare professionals’ communication skills, knowledge awareness and continuing education about the rights of children receiving healthcare services. Reflections and discussions on how to protect the best interests of children may help healthcare professionals to uphold children's best interest in daily clinical practice.

Background: With the increasing digitalization in health care, an effective instrument is necessary to assess health care consumers’ digital competencies—their “eHealth literacy.” The 7-scale eHealth Literacy Questionnaire (eHLQ), based on the theoretically robust eHealth Literacy Framework, has shown strong psychometric properties in Denmark and Australia. Objective: The aim of this study was to translate, culturally adapt, and evaluate the psychometric properties of the Swedish version of the eHLQ. Methods: We followed the Translation Integrity Procedure guidelines to translate and culturally adapt the questionnaire to Swedish using forward and backward translations, review by an expert panel, and cognitive interviewing. The psychometric properties of the Swedish eHLQ were investigated by evaluating its internal consistency (Cronbach α) and a priori–defined factor structure (confirmatory factor analysis). Results: A total of 236 primary health care patients and parents of hospitalized children were included in the validation analysis. The mean age was 48.5 years, and 129 (55%) were women. All 7 eHLQ scales showed good internal consistency, with the Cronbach α ranging from .82 to .92. Single-factor and 7-factor confirmatory factor analysis showed satisfactory model-fit values. With one exception, all items demonstrated satisfactory loadings on their respective factors. Conclusions: The Swedish eHLQ demonstrated strong psychometric properties. It has the potential as a useful tool for a variety of purposes, including population surveys, intervention evaluations, and eHealth service implementations.

Aims and objectives: To describe nurses' experiences of a child‐centred family guided intervention of obesity tested within the child health services targeting children identified with overweight and their caregivers.Background: Interventions aiming to support families towards a healthier lifestyle can lead to decreased risk of overweight evolving into obesity in a child. At the same time, nurses have found dialogues on weight challenging and may therefore avoid them.Design: Qualitative descriptive inductive design following content analysis applying to the COREQ guidelines.Methods: Content analysis was used to analyse 13 individual semi‐structured interviews with nurses in the child health service in Sweden after completed training in CCHD, including how to facilitate the dialogue with the use of illustrations.Results: The theme Health dialogue about weight is a challenging balancing act facilitated by a supportive intervention emerged through eight subcategories in three main categories. Nurses experienced that CCHD with children identified with overweight and their caregivers provoked an emotional response both for themselves and for the caregivers of the child. The training in child‐centred health dialogues promoted the nurses' work with structure and professionalism, as the nurses carefully took tentative steps to engage the family for a healthy lifestyle.Conclusions: Emotional and practical challenges in performing CCHD still remained among nurses after customised training, which might comprise the child's rights to be involved in his or her own care when the child was identified as overweight. However, training for nurses, including lectures and tutorials, was found to increase the quality and professionalism of performing CCHD by providing structure, tools and tutorial support.Relevance to clinical practice: Customised training and illustrations can support nurses when performing a structured intervention such as child‐centred health dialogues.