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. K E Y W O R D Schild, family members' lived experience, hermeneutic phenomenology, home-care services, paediatric careThis is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.

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

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.

BackgroundCentral 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.MethodsThis 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.DiscussionThrough 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.Trial registration Clinicaltrials.gov: NCT02300766, date of registration: November 21, 2014.

Background Home care service ( HCS ) for sick children is a complex healthcare service, which can be organised in various models. Despite the possibility to support family everyday life, the accessibility and utilisation may still be limited. The aim of this study was to (i) determine characteristics in referrals to county‐based HCS , (ii) determine characteristics of referred children and (iii) assess acceptability of parents and children in county‐based HCS . Methods Data on characteristics of referrals and referred children were collected from medical records of children 0–17 years of age, referred to eight HCS units during 2015–2018. Data on parental and child overall experience, satisfaction of, safety with, and preference for care, were collected from parents by a questionnaire. Descriptive and comparative statistics were used to analyse the data. Results Three hundred and fifty‐five referrals led to one or more periods of HCS for 171 children in various ages with a wide range of illnesses. Children with cancer (30%) composed the largest group and administration of intravenous antibiotics accounted for 56% of the care tasks. Seven per cent of the referrals were to palliative home care. Thirty‐eight referrals of 34 children were refused. There was an uneven distribution of the indication for referral, acceptance rate and diagnoses of children among HCS units. Parents reported their and their child's experience with the HCS visit as highly positive and preferred home care to hospital care in over 96% of the HCS in 212 visits. Conclusion County‐based HCS constitutes a supplement to hospital care for sick children with various illnesses through different stages of acute and long‐term illness and at end of life, with high levels of acceptability. Few referrals and variation in referral characteristics and acceptance rate of referrals between HCS units led to unequal and inequitable accessibility and utilisation of HCS .

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Healthcare costs and productivity losses associated with county-based home-care service for sick children in Sweden Aims: The aim of this study was to estimate the healthcare costs and productivity losses associated with countybased home-care services (HCS) for sick children. Methods: In this observational follow-up study, a combination of hospital care and HCS was compared to estimated alternative care solely at the hospital. Data on one year of healthcare utilisation for 32 children, supplied by the hospital and HCS, were collected from administrative systems. Corresponding healthcare unit prices were collected from healthcare pricelists. The human-capital approach was applied to estimate productivity losses and the value of productivity losses for 25 parents. Family characteristics, including parental work absenteeism and income, were collected by a questionnaire distributed to parents at five time points during a year. Descriptive and comparative statistics were used for analysis and carried out with ethical approval. Results: Healthcare costs for children receiving a combination of hospital care and HCS varied among children with estimated average healthcare cost savings of SEK 50 101 per child compared to the alternative of care provided only in the hospital. The reduced costs were related to children receiving nonpalliative HCS care tasks. Average annual productivity losses due to parental work absenteeism were estimated at 348 hours with an associated monetary value estimated at SEK 137 524 per parent. Conclusion: County-based HCS, provided as complement to and substitute for hospital care for ill children, does not increase healthcare cost and should be a prioritized area when organising paediatric health care. Productivity losses vary greatly among parents and are pronounced also when children receive HCS with signs of gender-related differences.

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.