| 1. |
- Afua Quaye, Angela, et al.
(author)
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How are children’s best interests expressed during their hospital visit? : An observational study
- 2021
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In: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 30:23-24, s. 3644-3656
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Journal article (peer-reviewed)abstract
- 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.
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| 2. |
- Castor, Charlotte, et al.
(author)
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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
- 2021
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In: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 30:44322, s. 819-829
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Journal article (peer-reviewed)abstract
- 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.
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| 3. |
- Castor, Charlotte, et al.
(author)
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A possibility for strengthening family life and health : Family members’ lived experience when a sick child receives home care in Sweden
- 2018
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In: Health and Social Care in the Community. - : Hindawi Limited. - 0966-0410 .- 1365-2524. ; 26:2, s. 224-231
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Journal article (peer-reviewed)abstract
- 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.
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| 4. |
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| 5. |
- Castor, Charlotte, et al.
(author)
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Accessibility, utilisation and acceptability of a county-based home care service for sick children in Sweden
- 2019
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In: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 33:4, s. 824-832
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Journal article (peer-reviewed)abstract
- 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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| 6. |
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| 7. |
- Castor, Charlotte, et al.
(author)
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Healthcare costs and productivity losses associated with county-based home-care service for sick children in Sweden
- 2020
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In: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 34:4, s. 1054-1062
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Journal article (peer-reviewed)abstract
- © 2020 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science 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 50101 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 348hours with an associated monetary value estimated at SEK 137524 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.
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| 8. |
- Castor, Charlotte, et al.
(author)
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Healthcare professionals' experiences and views of eHealth in pediatric care : qualitative interview study applying a theoretical framework for implementation
- 2023
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In: JMIR Pediatrics and Parenting. - 2561-6722.
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Journal article (peer-reviewed)abstract
- 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
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| 9. |
- Castor, Charlotte
(author)
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Home Care Services for Sick Children. Family, healthcare and health-economic perspectives.
- 2019
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Doctoral thesis (other academic/artistic)abstract
- Sjukhusvistelser hos ett barn kan påverka hela familjen psykosocialt och praktiskt och många familjer föredrar vård i hemmet framför vård på sjukhus. Samtidigt varierar modeller för organisation, finansiering och genomförande av sjukvård i hemmet nationellt och internationellt och det kan vara svårt att överföra kunskap mellan länder och organisationer. Kunskapen om vad som är viktigt för att ge vård i hemmet, av olika modeller, med hög kvalitet, till barn, är begränsad och mer forskning behövs. I Sverige varierar tillgången till vård i hemmet för sjuka barn mellan olika delar av landet och den vård som erbjuds är oftast organiserad av landstinget antingen i form av sjukhusanknuten hemsjukvård eller avancerad sjukvård i hemmet (ASIH). Det övergripandesyftet med denna avhandling var att utifrån olika perspektiv undersöka ASIHför barn, utförd av en verksamhet organiserad för att ge ASIH till både vuxna och barn. Resultat från kvalitativa och kvantitativa studier sammanfördes för att ge en djup och bred bild av vård i hemmet till barn med olika sjukdomar och i olika faser av sjukdom. Denna avhandling genomfördes i Skåne under åren 2015–2019 där möjlighet till ASIH för sjuka barn tidigare varit mycket begränsad. 2013 togs ett politiskt beslut att ASIH skulle erbjudas alla invånare i behov av vård i hemmet oavsett diagnos, prognos eller ålder. Verksamheten är organiserad i åtta enheter och kan under hela dygnet ersätta komplexa hälso- och sjukvårdsinsatser på vårdavdelning, dagvårdsenhet eller mottagning. Insatser ges antingen som punktinsats där exempelvis en sjuksköterska frånASIH ger antibiotika i hemmet efter ordination från läkare i barnsjukvården, eller som palliativ vård där ett multiprofessionellt ASIH-team övertar ansvaret för barnets vård. Med hjälp av fenomenografisk metod genomfördes och analyserades fokusgruppintervjuer med 37 professionella vårdgivare. Att vårda barn uppfattades som en personlig och professionell utmaning men också som givande och meningsfullt. Möjlighet att påverka sin arbetssituation, tillräckligt med tid och resurser för att skapa tillit hos familjen och samarbete med barnkliniken uppfattades som viktigt för att ge ASIH på ett tillfredsställande sätt. Den levda erfarenheter av ASIH när ett barn är sjukt undersöktes med hermeneutisk fenomenologisk metod. Totalt 12 familjer, varav 4 sjuka barn, 10 syskon och 23 vårdnadsgivare (föräldrar) deltog i 15 intervjuer. Att få vård i hemmet kunde ge förutsättningar för att familjens tid och resurser sparades så att vardagsliv och hälsa kunde stärkas. God kommunikation och tillitsfull relation med vårdgivare i ASIH och ett fungerande samarbete med barnsjukvården under perioden av vård i hemmet var viktigt för att familjen skulle känna trygghet.En granskning av alla remisser till ASIH på barn under en treårsperiod visade att 171 barn i åldrarna tre veckor till 18 år, med vitt skilda diagnoser och vårdbehov, fick ASIH. Hälften av barnen var under skolålder, 57 % av remisserna gällde intravenös administration av antibiotika och 6 % av remisserna gällde palliativ vård. Vanligaste diagnoserna hos barnen var onkologisk sjukdom (25 %) och neuro-borrelios (17 %). Det fanns skillnader inom regionen rörande hur stor andel av remisserna som gällde intravenös antibiotika och palliativ vård samt hur stor andel remitterade barn som accepterades för vård. En subgrupp av svensktalande föräldrar, boende i Skåne och med barn som fick ASIH, inbjöds att delta i en studie om hälso- och sjukvårdskostnader samt familjens vardagsliv och föräldrar till 36 barn lämnade skriftligt medgivande omdeltagande. Uppgifter om vårdkonsumtion från administrativa system och regionala prislistor insamlades med hjälp av en strukturerad mall. Kostnaderna för ASIH visade sig stå för en liten den av den totala hälso- och sjukvårds-kostnaden och kostnad för hälso- och sjukvården ökade inte när ASIH gavs som en del av total vård jämfört med vård utförd bara på sjukhus. Demografiska familjeuppgifter inhämtades via frågeformulär från föräldrar. Föräldrar skattade höga nivåer av sin egen, och sitt barns, nöjdhet och trygghet efter ASIH besök, och uppgav önskan om fortsatt vård i hemmet vid 209 av 212 besök. Tjugofem föräldrar uppgav tjänstetid, orsak till frånvaro från planerat arbete samt lön vid fem tillfällen under ett år. Analys av samhällskostnader i form av föräldrars frånvaro från arbete på grund av vård av barn varierade mellan 0 och 100 % och var omfattande i början av observationsåret även då barn fick ASIH. Resultatet från studierna relaterades till Bowens familjesystemteori och Grossmanshälsoekonomiska teori som förtydligar hur familjemedlemmar samverkar med andra närstående i ett interaktivt system och gör olika investeringar för att nå optimal hälsa. Vidare sker såväl, inom familjen som mellan familj och omvärld, ständiga förskjutningar och påfrestningar av relationer som påverkar upplevelsen av en situation som ASIH både i nutid och över generationer. Därför måste varje barn, familj och personal hanteras individuellt och varje situation kunna anpassas. Sammanfattningsvis visar avhandlingen att ASIH kan ges till barn i alla åldrar med en mängd olika sjukdomstillstånd vid olika stadier av akut, långvarig eller kronisk sjukdom och med hälso- och sjukvårdskostnader som inte överskrider vård som ges enbart på sjukhus. Vård kan ges med hög tillfredsställelse hos barn och föräldrar men fungerande kommunikation och samarbete mellan familj, ASIH och barnsjukvård är viktig för att familjer och personal skall känna förtroende och trygghet med vård i hemmet vid sjukdom hos ett barn. Resultatet ger vägledning för framtida organisation och implementering av ASIH för barn.
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| 10. |
- Castor, Charlotte, et al.
(author)
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Home care services for sick children : Healthcare professionals' conceptions of challenges and facilitators
- 2017
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In: Journal of Clinical Nursing. - : Wiley. - 0962-1067. ; 26:17-18, s. 2784-2793
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Journal article (peer-reviewed)abstract
- 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.
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