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- Aili, Katarina, 1980-, et al.
(författare)
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Health related quality of life and buffering factors in adult survivors of acute pediatric lymphoblastic leukemia and their siblings
- 2021
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Ingår i: Health and Quality of Life Outcomes. - London : BioMed Central. - 1477-7525 .- 1477-7525. ; 19:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: The improvement in treatment of pediatric acute lymphatic leukemia (ALL) has introduced new challenges for pediatric oncology care in understanding and handling long-term treatment-related complications later in adult life. The aim of this study was to describe health related quality of life (HRQoL) and the relation to buffering factors among young adult (YA) pediatric ALL survivors and their siblings.METHODS: This cross-sectional study was performed among 227 adults, treated for pediatric ALL in Sweden between 1985 and 1997 and their siblings (n = 70). Group means of HRQoL (SF-36) were compared between YA ALL survivors and the siblings, as well as to normative values from the general population. Self-efficacy (GSES) and social support (SS-13 subscale AVSI) was considering potential buffering factors for HRQoL and mental health. Associations between HRQoL and mental health respectively and self-efficacy and social support was analyzed.RESULTS: The YA ALL survivors scored significantly lower on the HRQoL parameters general health (69.6 vs. 78.4, p = 0.004) and role emotional (77.1 vs. 88.1, p = 0.014), than the siblings. Further, they reported significantly lower general health (69.6 vs. 75.8), vitality (56.9 vs. 68.8), social functioning (84.5 vs. 88.6), role emotional (77.1 vs. 85.7) and mental health (71.3 vs. 80.9) compared with Swedish norms. Both YA ALL survivors and the siblings reported lower vitality and worse mental health than the general population. The HRQoL parameters, depression, stress and anxiety were all associated with both self-efficacy and social support among the YA ALL survivors. Among the siblings however, only general health, vitality, role emotional, mental health and depression were associated with social support, and only general health and mental health were associated with general self-efficacy.CONCLUSION: The results from this study show that buffering factors, like social support and self-efficacy, may play an important role for psychosocial outcomes and HRQoL among YA ALL survivors later in life. The results suggest that this group could benefit from continuous support in adult life to handle consequences of their pediatric disease. © 2021, The Author(s).
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- Aili, Katarina, PhD, 1980-, et al.
(författare)
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Health-related quality of life in adults treated for paediatric acute lymphoblastic leukaemia: a cross-sectional and longitudinal cohort study
- 2022
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Ingår i: Bmj Open. - London : BMJ. - 2044-6055. ; 12:1
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Tidskriftsartikel (refereegranskat)abstract
- Introduction Acute lymphoblastic leukaemia (ALL) is the most common form of cancer in children. Although treatment methods have improved and resulted in significant improvement of survival and reduction in late effects and late mortality risk, the health-related quality of life (HRQOL) of survivors might be affected. To introduce new interventions in clinical practice with the potential to support positive HRQOL outcomes, more knowledge is needed on how HRQOL in this group is constructed and stimulated. The purpose of this study is to investigate how HRQOL is affected in adults treated for paediatric ALL, in a long-term perspective and possible factors influencing this relationship. Methods and analysis This cohort of young adult ALL survivors allows for investigations of factors influencing HRQOL outcomes on a national level. Eligible participants are obtained from the Swedish Childhood Cancer quality registry. Data collection includes both a follow-up of data collected in 2012 (n=224) and recruitment of new eligible participants to the cohort (n=601). The cohort will cover survivors of paediatric ALL, diagnosed between 1985 and 2007, at an age between 0 and 15 years. Data will be collected using validated, multidimensional, self-administered instruments, designed to measure HRQOL (SF-36), social support, sense of coherence and resilience. Ethics and dissemination The study will be carried out in accordance with the ethics permit obtained from the Swedish ethics review authority (Dnr 2019-05181). Dissemination of study results will take place through research articles and reports to the national patient organisation and the national network for consultancy nurses for this target group and to the working group for the Swedish national long-term care programme for childhood cancer. Results will also reach practical application within the follow-up clinic for adult childhood cancer survivors at Sahlgrenska Hospital in Gothenburg.
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- Arvidsson, Susann, 1965-, et al.
(författare)
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Adult survivors’ perceptions of their childhood and the influences of being treated for acute lymphoblastic leukaemia with allogeneic hematopoietic stem cell transplantation as a child : A phenomenographic study
- 2024
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Ingår i: European Journal of Oncology Nursing. - Oxford : Elsevier. - 1462-3889 .- 1532-2122. ; 70
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: Adults who had acute lymphoblastic leukaemia (ALL) as children and were treated with allogeneic hematopoietic stem cell transplantation (aHSCT) may have been affected in their lives due to several long-term complications. From a clinical point of view, it is of interest to study how survivors describe their perceptions of their childhood today. The aim was therefore to describe how adults perceived their childhood and the influences of being treated for ALL with aHSCT as a child.Method: Semi-structured telephone interviews were undertaken with 18 adults who had been treated for childhood ALL with aHSCT and were included in a national cohort of childhood ALL survivors, diagnosed between 1985 and 2007 at an age between 0 and 17 years. A phenomenographic analysis was used.Results: Three categories emerged: Feeling different, Feeling security and Feeling guilty. The informants felt that they had been different from other children but had felt security with the healthcare professionals and in care. They felt guilty because both their siblings’ and parents’ lives had been affected, but at the same time many perceived that they and their family members had become closer to one another.Conclusions: The results emphasised that adults who had been treated for childhood ALL with aHSCT were affected both in negative and positive ways during their childhood. This indicates the importance for early psychosocial care interventions directed to children during their treatment, but also the need for person-centred psychological care in long-term outpatient clinics. © 2024 The Authors. Published by Elsevier Ltd.
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- Carlsson, Ing-Marie, 1961-, et al.
(författare)
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Creating a communication space in the healthcare context : Children’s perspective of using the eHealth service, Sisom
- 2021
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Ingår i: Journal of Child Health Care. - London : Sage Publications. - 1367-4935 .- 1741-2889. ; 25:1, s. 31-43
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Tidskriftsartikel (refereegranskat)abstract
- According to the United Nation’s Convention of the Rights of the Child, children have the right to participate in their own healthcare and make their opinions heard. The aim of this study was thus to explore the impact of using an eHealth service, Sisom, to gain the children’s perspectives during their healthcare appointments. Data were gathered through individual interviews with a purposeful sample of 16 children, aged 6–13 years old, treated for different diseases and using the eHealth service, Sisom, during their healthcare appointments. The interviews were analysed using a constructivist grounded theory. The results showed that using Sisom made children’s voice heard by creating a communication space in the healthcare setting. This meant that the children got involved in the communication, were acknowledged as an important person who could give the answers to questions and were given time. Implementing the use of Sisom is a way to make children’s needs and preferences explicitly visible for decision-making in practice and thereby supporting the further development of child-centred care in practice. © The Author(s) 2020.
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- Cuesta, Marta, 1954-, et al.
(författare)
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Welfare technology, ethics and well-being a qualitative study about the implementation of welfare technology within areas of social services in a Swedish municipality
- 2020
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - Abingdon : Taylor & Francis. - 1748-2623 .- 1748-2631. ; 15:sup1
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: Digitalization and e-health have potential to generate good quality, equal health, well-being and to develop and strengthen individuals' resources with the goal of increased independence and participation in society. The implementation of welfare technology requires knowledge of digitalization, as well as an awareness of its meaning in terms of ethical principles and ethical analysis. The purpose of this study was to describe ethical analysis concerning the implementation of welfare technology, in terms of both strategies and tools, within areas of social services in a Swedish municipality.Method: We followed a working model that focused on increased knowledge and experience in the implementation of welfare technology from an ethical perspective. In the data collection were observations, a questionnaire with open-ended questions and focus group discussions used.Results: The analysis showed that when welfare technology was introduced and implemented within the area of social services in a municipality, ethical awareness resulting from the conflicts between various interests and values had to be addressed.Conclusions: The ethical analysis improved implementation of strategies and tools in terms of facts and values, and invisible underlying values to the concept of well-being.
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- Danielsson, Henrik, et al.
(författare)
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A Systematic Review of Longitudinal Trajectories of Mental Health Problems in Children with Neurodevelopmental Disabilities
- 2024
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Ingår i: Journal of Developmental and Physical Disabilities. - : Springer. - 1056-263X .- 1573-3580. ; 36, s. 203-242
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Forskningsöversikt (refereegranskat)abstract
- To review the longitudinal trajectories - and the factors influencing their development - of mental health problems in children with neurodevelopmental disabilities. Systematic review methods were employed. Searches of six databases used keywords and MeSH terms related to children with neurodevelopmental disabilities, mental health problems, and longitudinal research. After the removal of duplicates, reviewers independently screened records for inclusion, extracted data (outcomes and influencing factors), and evaluated the risk of bias. Findings were tabulated and synthesized using graphs and a narrative. Searches identified 94,662 unique records, from which 49 publications were included. The median publication year was 2015. Children with attention deficit hyperactivity disorder were the most commonly included population in retrieved studies. In almost 50% of studies, trajectories of mental health problems changed by < 10% between the first and last time point. Despite multiple studies reporting longitudinal trajectories of mental health problems, greater conceptual clarity and consideration of the measures included in research is needed, along with the inclusion of a more diverse range of populations of children with neurodevelopmental disabilities.
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| 9. |
- Eriksson, Monica, 1952-, et al.
(författare)
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Meaning of wellness in caring science based on Rodgers's evolutionary concept analysis
- 2024
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Ingår i: Scandinavian Journal of Caring Sciences. - West Sussex : John Wiley & Sons. - 0283-9318 .- 1471-6712. ; 38:1, s. 185-99
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Tidskriftsartikel (refereegranskat)abstract
- Background: Wellness is a holistic, multidimensional, and process-oriented property on a continuum. It has been used interchangeably with and is undifferentiated from concepts such as health and well-being without an in-depth clarification of its theoretical foundations and a reflection on its meaning. The concept of wellness is frequently used, but its definition remains unclear. Aim: To conceptually and theoretically explore the concept of wellness to contribute to a deeper understanding in caring science. Method: Rodgers' evolutionary concept analysis was applied to the theoretical investigation of data from publications of international origins. The focus was on antecedents, attributes, consequences, surrogate and related terms, and contextual references. A literature search was performed through a manual review of reference lists and an online search in CINAHL and PubMed via EBSCO, and in ProQuest. Abstracts were examined to identify relevant studies for further review. The inclusion criteria were peer-reviewed papers in English; papers published in scientific journals using the surrogate terms ‘wellness’, ‘health’, ‘health care’, and ‘health care and wellness’; and papers discussing and/or defining the concept of wellness. Twenty-six studies met the inclusion criteria. Results: Based on the findings from this concept analysis, a definition of wellness was developed: ‘a holistic and multidimensional concept represented on a continuum of being well that goes beyond health’. Implications for nursing practice were correspondingly presented. Conclusion: Wellness is defined as a holistic and comprehensive multidimensional concept represented on a continuum of being well, that goes beyond health. It calls attention by applying the salutogenic perspective to health promotion in caring science. It is strongly related to individual lifestyle and health behaviour and is frequently used interchangeably with health and well-being without an in-depth clarification of its theoretical foundation.
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- Gilljam, Britt-Mari, 1957-
(författare)
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Barns delaktighet i pediatrisk vård – perspektiv, erfarenheter och möjligheter till förändring utifrån barn med långvarig sjukdom
- 2020
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Bakgrund: Det senaste decenniet har patientens delaktighet fått en allt större uppmärksamhet i forskning, riktlinjer, lagar och klinisk vård. Men många barn känner sig inte delaktiga i sin vård. Vårdpersonal och föräldrar talar ofta över huvudet på barn och ofta förstår barnen inte vad de vuxna pratar om. Barn har också svårt att själva uttrycka sig verbalt i vårdsituationer. Det saknas studier som undersöker långvarigt sjuka barns perspektiv på främjande faktorer för barns delaktighet i vården. Det saknas också användarvänliga svenska validerade verktyg och frågeformulär där barn självständigt kan uttrycka sig och interagera med vårdpersonal, för att mäta barns delaktighet och för att tillämpa delaktighet praktiskt i vården. Både patientlagen och lagen om Förenta nationernas barnkonvention deklarerar att alla barn har rätt att vara delaktiga i sin vård. Denna rättighet behöver överföras till praktisk handling och både vårdpersonal och hälso- och sjukvården som organisation behöver utvecklas.Syfte: Det övergripande syftet med avhandlingen var att utforska barns perspektiv på delaktighet i sin vård, hos barn med långvarig sjukdom och att utveckla och validera verktyg och instrument för att stödja pediatriska verksamheter i tillämpning av barns delaktighet.Metod: I delstudie I användes en konstruktivistisk grundad teori för att utforska barns perspektiv, erfarenheter och önskemål om delaktighet samt främjande faktorer för att öka barns delaktighet. Datainsamlingen skedde genom intervjuer och fokusgrupper med barn med reumatisk sjukdom. I delstudie II användes en konvergent parallell mixad metod för att undersöka om det digitala kommunikationsverktyg Sisom påverkade delaktigheten hos barn med cancer under läkarbesök. I delstudie III användes en participatorisk design där det digitala kommunikationsverktyg Sisom vidareutvecklades och validerades i en svensk kontext. Metoden som användes var iterativ utvärdering genom low- and high-fidelity med friska barn och barn med cancer som deltagare. I delstudie IV användes en instrumentutvecklings design för att utveckla, validera och psykometriskt testa ett frågeformulär om barns delaktighet i vården. I studien deltog friska barn och barn med olika långvariga sjukdomar i utvecklingsarbetet.Resultat: I delstudie I framkom kärnkategorin Att släppa rädsla och osäkerhet öppnar för tillit och delaktighet med Att omges av trygga relationer och miljöer och Att bli stärkt och att få stöd för att kunna vara delaktig som tillhörande koder från den fokuserade kodningen. Dessa koder framkom från med barn med långvarig sjukdom som främjande faktorer för barns delaktighet i vården. Det kvalitativa resultatet i delstudie II visade att barns delaktighet ökade vid användning av det digitala kommunikationsverktyget Sisom. Det kvantitativa resultatet visade att läkarna tilltalade barnen oftare och att barnen talade något mer. I delstudie III utvecklades Sisom, tillsammans med barn, till ett användarvänligt digitalt verktyg på svenska. Verktyget utvecklades från problem fokuserat till salutogenetiskt och påståenden ändrades till frågor. Frågeformuläret (ChiPaC) som utvecklades i delstudie IV resulterade i ett frågeformulär där barn själva kan uttrycka sin uppfattning av delaktighet. Statistiska beräkningar resulterade i en faktoranalys med en fyra-faktorlösning, där 12 frågor inkluderades som förklarade 59,47 % av variansen. De fyra faktorerna benämndes: Att få vara med, Att lita på personalen, Att ta kontroll och Att förstå information. Intra Class Correlation visade stark och måttlig samstämmighet mellan sex av frågorna, svag samstämmighet mellan fem frågor och otillräcklig på en. Chronbach´s alpha beräknades till 0,76. Konklusion: Främjande faktorer för barns delaktighet i sin egen vård vid långvarig sjukdom är trygga relationer och miljöer samt att få stöd i att kunna vara delaktiga. Det digitala kommunikationsverktyget Sisom möjliggör för barn 6–12 år med långvarig sjukdom att självständigt uttrycka sina uppfattningar om hur de mår och sina upplevelser kring sin situation. Sisom främjar också barns delaktighet i form av att de blir lyssnade till, får uttrycka sina åsikter och synpunkter samt får dessa beaktade i samtal med vårdpersonal. Frågeformuläret ChiPaC visade tillfredställande psykometriska egenskaper för att kunna användas vid utvärdering av barns delaktighet i vården. Sisom och ChiPaC utvecklades från barns perspektiv med barn med långvarig sjukdom och friska barn som medaktörer. Denna avhandling bidrar även till kunskap om hur barn med långvarig sjukdom kan engageras som medaktörer i forskning.
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