Children with palliative care needs - the landscape of the nordic countries.

BACKGROUND: To strengthen palliative care for children in the Nordic countries, an updated status of current needs, resources, clinical services, education, and research is necessary to align and consolidate future research. A Nordic research collaboration initiative for children with palliative care needs was assembled in 2023. Building on this initiative, this paper presents an overview of pediatric palliative care (PPC) in the Nordic countries' (a) population characteristics, (b) care models and setting of care, (c) education and training, and (d) research. METHODS: The Nordic initiative researchers collaboratively gathered and assessed available data on the characteristics of PPC within Denmark, Finland, Greenland, Iceland, Norway, the Faroe Islands, Sweden, and Åland. Data were compiled in a matrix with population characteristics, models- and setting of care, education and training, and areas of research in a Nordic context. The findings are narratively and descriptively presented, providing an overview of Nordic PPC. RESULTS: In total, the Nordic child population comprises around six million children (0-19 years), of which about 41.200 are estimated to be living with a life-limiting and/or life-threatening condition. Healthcare services are provided through various care models, ranging from specialized care to homecare settings. Overall, there remain few opportunities for education and training with some exceptions. Also, Nordic research within PPC has been shown to be a growing field although much remains to be done. CONCLUSION: This overview is the first outline of the current PPC in Nordic countries. Although some differences remain important to acknowledge, overall, the strengths and challenges faced within PPC in the Nordic countries are comparable and call for joint action to increase evidence, services, and education to better serve the children, families, and healthcare personnel within PPC. Despite the varying structural premises for PPC, research endeavors aiming to provide evidence in this field seem increasing, timely and relevant for the Nordic countries, as well as the international context.

Content validity of the electronic faces thermometer scale for pain in children: is a picture worth more than a thousand words?

Introduction: Early recognition of pain in children is crucial, and their self-report is the primary source of information. However, communication about pain in healthcare settings can be challenging. For non-verbal communication regarding different symptoms, children prefer digital tools. The electronic Faces Thermometer Scale (eFTS) utilizes a universal design with colors, face emojis, and numbers on an 11-point scale (0-10) for pain assessment. The aim of this study was to establish content validity of the eFTS for pain assessments in children. Methods: A mixed methods design was used. The study took place at a university hospital in eastern Sweden, involving 102 children aged 8-17 years who visited outpatient clinics. Participants were presented with 17 pictures representing varying pain levels and asked to assess hypothetical pain using the eFTS. A think-aloud approach was employed, prompting children to verbalize their thoughts about assessments and the eFTS. Quantitative data were analyzed using descriptive and comparative statistics, together with a qualitative approach for analysis of think-aloud conversations. Results: A total of 1,734 assessments of hypothetical pain using the eFTS were conducted. The eFTS differentiated between no pain (level 0-1) and pain (level 2-10). However, no clear agreement was found in the differentiation between hypothetical pain intensity levels (level 2-10). The analysis revealed that children utilized the entire scale, ranging from no pain to high pain, incorporating numbers, colors, and face emojis in their assessments. Discussion: The variability in assessments was influenced by prior experiences, which had an impact on the statistical outcome in our study. However, employing the think-aloud method enhances our understanding of how children utilize the scale and perceive its design, including the incorporation of emotion-laden anchors. Children express a preference for using the eFTS to assess their pain during hospital visits.

It's about living a normal life: parents' quality of life when their child has a life-threatening or life-limiting condition - a qualitative study.

BACKGROUND: Pediatric palliative care (PPC) seeks to enhance the quality of life (QoL) for both children and their families. While most studies within PPC have focused on the ill child's QoL, less is known about parents' experiences of their own QoL. The aim of this study was to explore parents' QoL when their child has a life-threatening or life-limiting condition. METHODS: The study has a qualitative, hermeneutic phenomenological design inspired by van Manen's phenomenology of practice. In-depth interviews were conducted with 12 fathers and 12 mothers of children living with cancer or a genetic condition. A deeper understanding of parents' lived experiences was obtained through an adapted photo elicitation method. Two rounds of thematic analysis were conducted, covering both the photo elicitation data, and interview data. RESULTS: The findings describe four themes related to parents' QoL: living a normal life, giving my child a good life, having time to fulfill siblings' needs, and feeling heard and respected in the health and social care system. CONCLUSIONS: The complexity of elements shaping parents' QoL is evident. The interconnectedness between parents, the ill child, siblings, and interactions with the health and social care system, highlights the need to understand and address diverse aspects in enhancing parents QoL.

"What about me?": lived experiences of siblings living with a brother or sister with a life-threatening or life-limiting condition.

BACKGROUND: There is a lack of knowledge regarding siblings' experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings' perspectives are often expressed through their parents and not by siblings themselves. METHOD: This study has a qualitative design within hermeneutic phenomenology. Thirteen siblings (ages 3-29) of children with cancer or genetic conditions participated in semi-structured interviews. Analyses followed a thematic analysis guided by van Manen's lifeexistentials. RESULTS: One overall theme, "What about me?", illustrates that siblings of children with LT/LL conditions are dealing with their own challenges and needs in the situation while also struggling to receive attention from their parents. The overall theme derives from three subthemes: living with heavy strains, feeling disregarded, and having needs of one's own. CONCLUSION: The study revealed that siblings' own needs compete with the needs of the ill child, resulting in the risk of siblings taking a step back rather than expressing what they might actually need themselves. These findings can inform healthcare professionals on the importance of educating and supporting parents and the surrounding community close to the sibling, for example, by helping schoolteachers understand how to meet siblings' needs.

Physician's conceptions of the decision-making process when managing febrile infants ≤ 60 days old: a phenomenographic qualitative study.

BACKGROUND: The management of febrile infants aged ≤ 60 days and adherence to guidelines vary greatly. Our objective was to describe the process of decision-making when managing febrile infants aged ≤ 60 days and to describe the factors that influenced this decision. METHODS: We conducted 6 focus group discussions with 19 clinically active physicians in the pediatric emergency departments of 2 university hospitals in Skåne region, Sweden. We followed an inductive qualitative design, using a phenomenological approach. A second-order perspective was used, focusing on how physicians perceived the phenomenon (managing fever in infants) rather than the phenomenon itself. The transcribed interviews were analyzed using a 7-step approach. RESULTS: Performing a lumbar puncture (LP) was conceived as a complex, emotionally and mentally laden procedure and dominated the group discussions. Three central categories emerged as factors that influenced the decision-making process on whether to perform an LP: 1) a possible focus of infection that could explain the origin of the fever, 2) questioning whether the temperature at home reported by the parents was a fever, especially if it was ≤ 38.2°C, and 3) the infant's general condition and questioning the need for LP in case of well-appearing infants. Around these 3 central categories evolved 6 secondary categories that influenced the decision-making process of whether to perform an LP or not: 1) the physicians' desire to be able to trust their judgement, 2) fearing the risk of failure, 3) avoiding burdensome work, 4) taking others into account, 5) balancing guidelines and resources, and 6) seeing a need to practice and learn to perform LP. CONCLUSIONS: The difficulty and emotional load of performing an LP were important factors that influenced the decision-making process regarding whether to perform an LP. Physicians highlighted the importance of being able to rely on their clinical judgment and make independent decisions. Guidelines may consider allowing a degree of flexibility and independent thinking to take into account patients' characteristics and needs.

Pediatric palliative care in Sweden.

In Sweden, the governance of healthcare is decentralized, so PC is provided with regional or local differences in organization, level of competence, and recourses. Ongoing regional and national initiative to increase quality of pediatric palliative care in Sweden aligns with the international standard of pediatric palliative care as a care directed towards all children with life-threatening or life-limiting illness or conditions from the time of diagnosis. Examples of such initiatives and of different care-services providing pediatric palliative care will be presented. Finally a case to highlighting how a child's care needs might change throughout the illness trajectory and how various healthcare facilities and organizations when collaborating can support the child's participation in decision making is presented.

Health Care Professionals' Experiences and Views of eHealth in Pediatric Care: Qualitative Interview Study Applying a Theoretical Framework for Implementation.

BACKGROUND: The development and evaluation of eHealth interventions in clinical care should be accompanied by a thorough assessment of their implementation. The NASSS (Non-adoption, Abandonment, and Challenges to the Scale-Up, Spread, and Sustainability of Health and Care Technologies) framework was designed to facilitate the implementation and scale-up of health technology programs, providing an option for analyzing the progression of these initiatives as they are implemented in real-time. Considering health care provider perspectives within the framework for implementation offers valuable insights into the early identification of barriers and facilitators in the implementation of potentially effective eHealth innovations. Nevertheless, there is a dearth of studies on eHealth interventions that encompass longer time frames and delve into the complexities of scaling up and sustaining such interventions within real-world health care environments. OBJECTIVE: This study aims to investigate the perspectives and insights of health care professionals (HCPs) regarding the implementation of an eHealth intervention in pediatric health care while applying the NASSS framework to theorize and evaluate the conditions influencing the implementation of eHealth solutions. METHODS: Semistructured interviews were performed with health care providers, including both staff and management personnel, within a university pediatric hospital (N=10). The data collection process occurred concurrently with a clinical trial focused on developing and assessing an eHealth app for self-management in pediatric care following hospital discharge. Using an abductive approach, the interviews were initially analyzed qualitatively and subsequently mapped onto the 7 domains of the NASSS framework to identify factors influencing implementation, encompassing facilitators, barriers, and varying levels of complexity. RESULTS: In the realm of pediatric care, the family was identified as the primary unit of care, and patient heterogeneity was a prominent feature. The implementation of eHealth tools, while deemed usable and flexible, was also seen as a delicate balance between safety and adaptability, highlighting challenges related to health care integration. Child participation and secrecy, especially for adolescents, contributed to the complexity of using eHealth. HCPs had high eHealth literacy, and thus challenges concerning adoption were related to work adaptations and the risk of "app overload." The readiness for implementation was experienced as induced through the research study and the pandemic situation. However, to move from research to implementation in clinical practice, organizational challenges identified a need to update the concept of care and ensure activity measurements. In a wider context, HCPs raised concerns related to regulatory requirements for documentation, public procurement, and data safety. Implementation became more complex due to a lack of overview in a large organization. CONCLUSIONS: Important perspectives for implementation were considerations of regulatory requirements, as well as the need for a shared vision of eHealth and the establishment of eHealth-related work as part of regular health care. Key contextual factors that support reach and impact are communication channels between different levels at the hospital and a need for paths and procedures compatible with legal, technological, and security concerns. Further research should focus on how eHealth interventions are perceived by children, adolescents, their parents, and other stakeholders. TRIAL REGISTRATION: ClinicalTrials.gov NCT04150120; https://clinicaltrials.gov/ct2/show/NCT04150120.

Patient-reported outcome measures in children, adolescents, and young adults with palliative care needs-a scoping review.

BACKGROUND: Measuring outcomes facilitates evaluation of palliative services for children, adolescents, and young adults (CAYAs) with life-limiting and/or life-threatening (LL/LT) conditions. Implementation of patient-reported, proxy-reported, or patient-centered outcome measures (hereafter PROMs) is recommended to ensure palliative services. The purpose of this scoping review was to provide an overview of PROMs relevant for CAYAs living with LL/LT conditions eligible for pediatric palliative care (PPC). METHODS: Arksey and O'Malley's 6-stage scoping review framework was used to guide the review. The identified citations had to report on PROMs in any context including CAYAs with LL/LT conditions up to 25 years of age. A systematic search of Medline, EMBASE, CINAHL, APA PsycInfo, Health and Psychosocial Instruments, and AMED took place in January 2021 and was updated in June 2022. Citations were screened independently by pairs of researchers. The scoping review protocol was registered, and peer-review published. RESULTS: Of 3690 identified citations, 98 reports were included, of which the majority were from Western countries and about PROMs in CAYAs living with cancer or organ failure. A total of 80 PROMs were identified, assessing a range of phenomena, where quality of life and symptoms (especially pain) during the stage of ongoing care were the most frequent. There were only a few reports about outcome measures at time of diagnosis or in end-of-life care. CAYAs self-reported on the PROMs or collaborated with their parents in about half of the reports, while the remaining had proxies answering on behalf of the CAYAs. In the identified reports, PROMs were used to characterize a sample through cross-sectional or longitudinal research, and less often to assess effects of interventions. CONCLUSION: The identified PROMs in the CAYA population eligible for PPC is characterized by studies in high-income countries during ongoing care, primarily in patients with cancer or organ failure. More research is needed in patients living with other LL/LT conditions, and during different stages of the disease course, especially at time of diagnosis, during transition to adulthood, and in end-of-life care. This scoping review of PROMs relevant for young patients eligible for PPC may inform future research about patient-/proxy-reported or patient-centered outcome measures in PPC. TRIAL REGISTRATION: Review registration: ( https://osf.io/yfch2/ ) and published protocol (Holmen et al. Syst Rev. 10:237, 2021).

The Swedish Version of the eHealth Literacy Questionnaire: Translation, Cultural Adaptation, and Validation Study.

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.

Parents' recalled experiences of the child centred health dialogue in children with overweight: a qualitative study.

BACKGROUND: Because overweight and obesity are still increasing and prevention of childhood obesity is more likely to be effective when initiated in preschool children, the Child Health Service in the south of Sweden developed a structured child-centred health dialogue model targeting all 4-year-old children and their families. The aim of this study was to describe parents' recalled experiences of this health dialogue in children with overweight. METHODS: A qualitative inductive approach with purposeful sampling was used. Thirteen individual interviews with parents (including 11 mothers and 3 fathers) were conducted and analysed with qualitative content analysis. RESULTS: The analysis resulted in two categories: 'A valuable visit with a subtle individual impact' that described parents' recalled experiences of the health dialogue and 'There is a complex interaction between weight and lifestyle' that reflected the parents' perceptions of the relationship between their children's weight and lifestyle. CONCLUSIONS: Parents recalled the child-centred health dialogue as important and described discussing a healthy lifestyle as one of the obligations of the Child Health Service. Parents wanted confirmation that their family lifestyle was healthy; however, they did not want to discuss the relationship between their family lifestyle and their children's weight. Parents expressed that when their child followed the child's growth curve, then this indicated healthy growth. This study supports using the child-centred health dialogue as a model to provide structure for discussing a healthy lifestyle and growth but highlights the difficulties of discussing body mass index and overweight, especially in the presence of children.

eHealth literacy and socioeconomic and demographic characteristics of parents of children needing paediatric surgery in Sweden.

AIM: The aim of the study was to describe different eHealth literacy domains among parents of children needing paediatric surgery in Sweden, and the correlation between these eHealth literacy domains and parents' socioeconomic factors and demographic characteristics. DESIGN: Descriptive correlational design. METHOD: Thirty-five Swedish-speaking parents participated as a historical control group within an ongoing Swedish clinical trial developing eHealth solutions for families after hospital care; of these, 30 completed the eHealth Literacy Questionnaire and the socioeconomic and demographic questionnaire. RESULTS: Of the seven eHealth literacy domains assessed, parents' strengths lay in those pertaining to their own digital competence, control and safety, while their weakness concerned their motivation to engage with digital services, and their ability to access eHealth platforms that work. Overall, parents presented adequate eHealth literacy. Of the five socioeconomic and demographic variables assessed (i.e. monthly wages, education levels, age, gender and residency), monthly wages correlated the strongest, and positively, with the seven eHealth literacy domains.

Stories of paediatric palliative care: a qualitative study exploring health care professionals' understanding of the concept.

BACKGROUND: By sharing patient stories, health care professionals (HCPs) may communicate their attitudes, values and beliefs about caring and treatment. Previous qualitative research has shown that HCPs usually associate paediatric palliative care (PPC) with death or dying and that they find the concept challenging to understand and difficult to implement. Attending to HCPs' stories may provide a richer account of their understanding of PPC. Thus, the aim of this study was to explore PPC stories narrated by HCPs to gain increased insight into their understanding of what PPC entails. METHODS: This qualitative study collected data from four focus group interviews with 21 HCPs from different units in two Norwegian hospitals. Stories told by the HCPs to illustrate their comprehension of PPC were analysed following thematic analysis procedures. RESULTS: Four themes were identified illustrating what PPC meant to the participants: creating spaces for normality, providing tailored support for the family, careful preparations for saying goodbye and experiencing dilemmas and distress. The stories centred on family care, particularly relating to dramatic or affective situations when the death of a child was imminent. CONCLUSION: The stories reflect how the HCPs view PPC as a specific field of health care that requires particular professional sensitivity, including good communication, collaboration and planning. Thus, the HCPs in this study demonstrated knowledge about the core qualities needed to succeed in PPC. However, similar to previous research, the stories illustrate that how HCPs speak about PPC is strongly associated with end-of-life care, and by that the HCPs do not capture the breadth of the PPC concept. The findings highlight the importance of increasing knowledge about the meaning and content of PPC among HCPs in order to maintain quality of life for all children with life-limiting or life-threatening conditions throughout their illness trajectory.

Patient-reported outcome measures in pediatric palliative care-a protocol for a scoping review.

BACKGROUND: In pediatric palliative care (PPC), there is a need to involve the child's voice in situations regarding their symptoms and care needs. Patient-reported outcome measures (PROMs) can be tools to systematically gather data reported from the child or a proxy if the child is not capable to self-report in order to provide the services they need. There has been a rapid development in PROM research the last decade, and there is a need for an overview of current knowledge and experiences in the field. Thus, we aim to explore and summarize what is known from the published research about PROMs in PPC. METHODS: We propose a scoping review following the framework by Arksey and O'Malley and the PRISMA Extension for Scoping Reviews checklist. A systematic search will be performed in the following databases: Medical Literature Analysis and Retrieval System Online (Medline), Excerpta Medica database (EMBASE), Cumulative Index to Nursing and Allied Health Literature (CINAHL), American Psychological Association (APA) PsycInfo, Health and Psychosocial Instruments (HaPI), and Allied and Complementary Medicine Database (AMED). The search will be followed by snowballing to identify key papers and significant researchers for additional citations. Covidence will facilitate the independent review of eligible citations, and data will be extracted and presented descriptively, and thematically analyzed using NVivo. DISCUSSION: The scoping review suggested in this protocol will identify PROMs which have been proposed in PPC and clarify the experiences with their use. The findings of this review will be relevant for researchers and healthcare personnel caring for children and adolescents in PPC. In addition, by highlighting knowledge gaps about the use of PROMs in PPC, this review will point out future needs within this field of research, which is crucial for improving quality of care in PPC. SYSTEMATIC REVIEW REGISTRATION: https://osf.io/yfch2/ .

How are children's best interests expressed during their hospital visit?-An observational study.

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.

A challenging balancing act to engage children and their families in a healthy lifestyle - Nurses' experiences of child-centred health dialogue in child health services in Sweden.

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.

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 county-based 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.

Accessibility, utilisation and acceptability of a county-based home care service for sick children in Sweden.

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.

A possibility for strengthening family life and health: Family members' lived experience when a sick child receives home care in Sweden.

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.

Cerebellar mutism syndrome in children with brain tumours of the posterior fossa.

BACKGROUND: 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. METHODS: 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. DISCUSSION: 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. TRIAL REGISTRATION: Clinicaltrials.gov : NCT02300766 , date of registration: November 21, 2014.

Home care services for sick children: Healthcare professionals' conceptions of challenges and facilitators.

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.