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- Ayoub, Maria, 1990-, et al.
(författare)
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The Family Talk Intervention in Pediatric Oncology : Potential Effects Reported by Parents
- 2024
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Ingår i: Children. - : MDPI. - 2227-9067. ; 11:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Childhood cancer impacts the family system and has psychosocial consequences for all family members. For the parents, the ill child, and the siblings to be able to adjust to this challenging situation, the whole family needs access to psychosocial support. However, only a few such family interventions in pediatric oncology have been evaluated. The aim of this study was to explore the potential effects of a family-centered intervention, the Family Talk Intervention (FTI), in pediatric oncology from the parents' perspectives. Methods: A concurrent mixed methods design was used for this study. Data were derived from a pilot study of 26 families recruited from one pediatric oncology center in Sweden. This study focused on questionnaire and interview data from 52 parents. Results: After participation in FTI, the parents felt more satisfied with the conversations within the family about the illness. FTI also contributed to strengthened family togetherness, including more open communication and improved family relations, as described by the parents. Parents further expressed that they felt more empowered in their parenting role following FTI. Conclusions: The findings regarding FTI's ability to improve family communication and family relations, thus strengthening family togetherness in families with childhood cancer, are promising. This provides motivation for a large-scale study of FTIs in pediatric oncology.
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- Jalmsell, Li, et al.
(författare)
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Children with cancer share their views : tell the truth but leave room for hope
- 2016
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Ingår i: Acta Paediatrica. - : Wiley. - 0803-5253 .- 1651-2227. ; 105:9, s. 1094-1099
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Tidskriftsartikel (refereegranskat)abstract
- AimOne in five children diagnosed with cancer will die from the disease. The aim of the study was to explore how children with cancer want to receive bad news about their disease, such as when no more treatment options are available. MethodsWe conducted individual interviews with ten children with cancer, aged seven to 17 years, at a single paediatric oncology unit in central Sweden. Interviews were audio-taped and analysed with systematic text condensation. Bad news was defined as information about a potentially fatal outcome, such as a disease relapse, or information that the treatment administered was no longer working and that there was no more treatment possible. ResultsAll children expressed that they wanted truthful information and they did not want to be excluded from bad news regarding their illness. They wanted to be informed as positively as possible, allowing them to maintain hope, and in words that they could understand. They also wanted to receive any bad news at the same time as their parents. ConclusionChildren with cancer want to be fully informed about their disease, but they also wanted it to be relayed as positively as possible so that they could stay hopeful.
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- Gerhardsson, Emma, et al.
(författare)
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Mothers' Adaptation to a Late Preterm Infant When Breastfeeding
- 2020
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Ingår i: Journal of Perinatal & Neonatal Nursing. - : Wolters Kluwer. - 0893-2190 .- 1550-5073. ; 34:1, s. 88-95
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to psychometrically test the Adaptation to the Late Preterm Infant when Breastfeeding Scale (ALPIBS) and also to test how a mother's self-efficacy predicts adaptation to a late preterm infant when breastfeeding. This study had a longitudinal and prospective design, and data collection was consecutive. Mothers (n = 105) with infants born between and weeks were recruited from a neonatal intensive care unit or a maternity unit. The ALPIBS was developed using exploratory factor analysis, and the association between breastfeeding self-efficacy and ALPIBS score was examined using linear regression analysis. The Breastfeeding Self-Efficacy Scale-Short Form instrument was used to measure self-efficacy in breastfeeding. A higher degree of self-efficacy was significantly associated with a higher degree of adaptation to the late preterm infant's breastfeeding behavior (P < .001). We identified 4 separate underlying factors measured by 11 items in the ALPIBS: (A) breastfeeding is a stressful event; (B) the infant should breastfeed as often as he or she wants; (C) a mother has to breastfeed to be a good mother; and (D) it is important to ensure control over the infant's feeding behavior. There is a link between self-efficacy and ALPIBS score, and self-efficacy is a modifiable factor that influences breastfeeding.
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- Backman, Ellen, 1981-, et al.
(författare)
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Documentation of everyday life and health care following gastrostomy tube placement in children : a content analysis of medical records
- 2020
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Ingår i: Disability and Rehabilitation. - Abingdon : Taylor & Francis. - 0963-8288 .- 1464-5165. ; 42:19, s. 2747-2757
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Everyday routines play a vital role in child functioning and development. This study explored health professionals' documentation of everyday life and health care during the first year following gastrostomy tube placement in children and the content of intervention goals.METHODS: The medical records of 39 children (median age 38 months, min-max: 15-192) in one region of Sweden were analysed. A content analysis approach was used with an inductive qualitative analysis supplemented by a deductive, quantitative analysis of documented intervention goals following the ICF-CY.RESULTS: One overall theme, "Seeking a balance", captured the view of life with a gastrostomy and the health care provided. Two categories, "Striving for physical health" and "Depicting everyday life" with seven sub-categories, captured the key aspects of the documentation. Twenty-one children (54%) had intervention goals related to the gastrostomy, and these goals primarily focused on the ICF-CY component "Body functions".CONCLUSIONS: To some extent the medical records reflected different dimensions of everyday life, but the intervention goals clearly focused on bodily aspects. Understanding how health care for children using a gastrostomy is documented and planned by applying an ecocultural framework adds a valuable perspective and can contribute to family-centred interventions for children using a gastrostomy. Implications for Rehabilitation There is a need for increased awareness in healthcare professionals for a more consistent and holistic healthcare approach in the management of children with gastrostomy tube feeding. This study suggests that an expanded focus on children's participation in everyday mealtimes and in the healthcare follow-up of gastrostomy tube feeding is important in enhancing the intervention outcome. Multidisciplinary teams with a shared bio-psycho-social understanding of health would contribute to a situation in which the everyday lives of households adapt to living with gastrostomy. Routine care for children with gastrostomy should follow a checklist combining crucial physiological aspects of gastrostomy tube feeding with seemingly mundane family functions in order to achieve a successful gastrostomy tube feeding intervention.
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| 6. |
- Landfeldt, Erik, et al.
(författare)
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Health-related quality of life of children with spinal muscular atrophy in Sweden : A prospective cohort study in the era of disease-modifying therapy
- 2023
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Ingår i: European journal of paediatric neurology. - : Elsevier. - 1090-3798 .- 1532-2130. ; 46, s. 67-73
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Tidskriftsartikel (refereegranskat)abstract
- The objective of this study was to estimate change over time in health-related quality of life (HRQoL) of children with spinal muscular atrophy (SMA) in Sweden. Children with SMA were identified via the National Patient Register by the National Board of Health and Welfare in Sweden. Patient HRQoL was caregiver proxy-assessed using the Pediatric Quality of Life Inventory 4.0 Generic Core Scales at baseline, as well as at 6, 12, and 18 months of follow-up. Results were stratified by SMA type. Mothers and fathers to 27 children with SMA (mean patient age: 9.17 years; 59% female) participated in the study. All patients received disease-modifying therapy. At baseline, across SMA types, the mean total score was estimated at between 52.68 and 59.19, Physical Functioning score at between 26.39 and 40.34, Emotional Functioning score at between 66.82 and 68.57, Social Functioning score at between 55.00 and 70.45, and School Functioning score at between 70.45 and 78.33. The mean annual total score change was estimated at −2.03 for SMA type I, 4.11 for SMA type II, and 1.12 for SMA type III. In conclusion, we show that SMA has a detrimental impact on HRQoL that extends above and beyond somatic disability. Children with SMA type II experienced a dramatic increase in HRQoL over time, predominantly related to improvement in physical and social functioning. Our data helps quantify the patient burden of disease and adds to the rapidly expanding body of evidence of the effectiveness of recently approved disease-modifying therapies for SMA.
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| 9. |
- Angelhoff, Charlotte, et al.
(författare)
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Swedish translation and validation of the Pediatric Insomnia Severity Index
- 2020
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Ingår i: BMC Pediatrics. - : BioMed Central. - 1471-2431. ; 20:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: To increase health and well-being in young children, it is important to acknowledge and promote the child's sleep behaviour. However, there is a lack of brief, validated sleep screening instruments for children. The aims of the study were to (1) present a Swedish translation of the PISI, (2) examine the factor structure of the Swedish version of PISI, and test the reliability and validity of the PISI factor structure in a sample of healthy children in Sweden.Methods: The English version of the PISI was translated into Swedish, translated back into English, and agreed upon before use. Parents of healthy 3- to 10-year-old children filled out the Swedish version of the PISI and the generic health-related quality of life instrument KIDSCREEN-27 two times. Exploratory and confirmatory factor analyses for baseline and test-retest, structural equation modelling, and correlations between the PISI and KIDSCREEN-27 were performed.Results: In total, 160 parents filled out baseline questionnaires (test), whereof 100 parents (63%) filled out the follow-up questionnaires (retest). Confirmative factor analysis of the PISI found two correlated factors: sleep onset problems (SOP) and sleep maintenance problems (SMP). The PISI had substantial construct and test-retest reliability. The PISI factors were related to all KIDSCREEN-27 dimensions.Conclusions: The Swedish version of the PISI is applicable for screening sleep problems and is a useful aid in dialogues with families about sleep.
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| 10. |
- Backman, Ellen, MSc, 1981-
(författare)
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Ordinary mealtimes under extraordinary circumstances : Routines and rituals of nutrition, feeding and eating in children with a gastrostomy and their families
- 2021
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The aim of this thesis is to explore routines and rituals related to feeding, eating, and mealtimes in families that have a child with a gastrostomy tube (G-tube), from the perspectives of healthcare professionals, the children, and their parents. The thesis is based on four empirical studies. Study I is a longitudinal, quantitative study with the aim to describe children with developmental or acquired disorders receiving a G-tube, and to compare characteristics, contacts with healthcare professionals, and longitudinal eating outcomes. Findings from Study I demonstrated that children with developmental disorders needed G-tube feeding for longer than children with acquired disorders. Children with developmental disorders were also younger at G-tube placement, and had more multidisciplinary healthcare. These findings led to the subsequent studies focused specifically on children with developmental disorders. Study II applies mixed methods and explores everyday life, health care, and intervention goals during the first year following G-tube placement through the documentation in medical records. In Studies III and IV, the experiences of family mealtimes for children with a G-tube and their parents are collected through individual interviews that are analysed qualitatively. Triangulation of methods, participants, researchers, and data across the four studies is applied to search for confirmation between findings, as well as to identify areas of discrepancy. Ecocultural theory, the WHO framework ICF, and the concept of participation form the conceptual framework of the thesis. Taken together, findings from the studies describe how the main experiences of feeding, eating, and mealtime relate to specific impairments of the child, the collective value attached to family mealtimes, and the parental responsibility to harmonise competing interests and conflicts among family members and/or healthcare professionals. This thesis extends previous research by focusing on the ecocultural context of the child in combination with a dimensional understanding of health. The findings shed light on measures taken by the families themselves to adjust to and handle their daily lives, as well as spell out areas where more support is needed. Furthermore, this thesis suggests that an expanded focus on children’s participation in everyday mealtimes, and in the healthcare follow-up of G-tube feeding, is important in enhancing intervention outcomes.
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