| 1. |
- Petersson, Christina
(författare)
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Using health-related quality of life instruments for children with long-term conditions : On the basis of a national quality registry system
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: There has been a continuous development of new technologies in healthcare that are derived from national quality registries. However, this innovation needs to be translated into the workflow of healthcare delivery, to enable children with long-term conditions to get the best support possible to manage their health during everyday life. Since children living with long-term conditions experience different interference levels in their lives, healthcare professionals need to assess the impact of care on children’s day-to-day lives, as a complement to biomedical assessments.Aim: The overall aim of this thesis was to explore and describe the use of instruments about health-related quality of life (HRQOL) in outpatient care for children with long-term conditions on the basis of a national quality registry system.Methods: The research was conducted by using comparative, cross-sectional and explorative designs and data collection was performed by using different methods. The questionnaire DISABKIDS Chronic Generic Measure -37 was used as well as semi-structured interviews and video-recordings from consultations. Altogether, 156 children (8–18 years) and nine healthcare professionals participated in the studies. Children with Type 1 Diabetes (T1D) (n 131) answered the questionnaire DISABKIDS and children with rheumatic diseases, kidney diseases and T1D (n 25) were interviewed after their consultation at the outpatient clinic after the web-DISABKIDS had been used. In total, nine healthcare professionals used the HRQOL instrument as an assessment tool during the encounters which was video-recorded (n 21). Quantitative deductive content analysis was used to describe content in different HRQOL instruments. Statistical inference was used to analyse results from DISABKIDS and qualitative content analysis was used to analyse the interviews and video-recordings.Results: The findings showed that based on a biopsychosocial perspective, both generic and disease-specific instruments should be used to gain a comprehensive evaluation of the child’s HRQOL. The DISABKIDS instrument is applicable when describing different aspects of health concerning children with T1D. When DISABKIDS was used in the encounters, children expressed positive experiences about sharing their results with the healthcare professional. It was discovered that different approaches led to different outcomes for the child when the healthcare professionals were using DISABKIDS during the encounter. When an instructing approach is used, the child’s ability to learn more about their health and how to improve their health is limited. When an inviting or engaging approach is used by the professional, the child may become more involved during the conversations.Conclusions: It could be argued that instruments of HRQOL could be used as a complement to biomedical variables, to promote a biopsychosocial perspective on the child’s health. According to the children in this thesis, feedback on their results after answering to web-DISABKIDS is important, which implies that healthcare professionals need to prioritize time for discussions about results from HRQOL instruments in the encounters. If healthcare professionals involve the child in the discussion of the results of the HRQOL, misinterpreted answers could be corrected during the conversation. Concurrently, this claims that healthcare professionals invite and engage the child.
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| 2. |
- Zhou, Lihua
(författare)
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Perceived growth following gynecological cancer and its associated factors from the perspectives of Chinese women, spouses, couples and registered nurses
- 2023
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Gynecological cancer (GC) is the most common cancer diagnosis among women, globally, including China. Women who experience a diagnosis of GC, their spouses, the couples as a unit, as well as registered nurses (RNs) caring for these women, all face different challenges during this cancer trajectory. Prior to this study, few studies have explored the factors associated with perceived growth among women diagnosed with GC, their spouses, and couples, as well as RNs caring for these women, based on a growth-related theory and model. The overall aim of this thesis was therefore to explore perceived growth and its associated factors, based on these persons’ perspectives.Four studies (Study I–IV) ) were conducted, each using a cross-sectional and descriptive study design. In Study I, women’s posttraumatic growth (PTG) and its associated factors were explored. Data were collected through 344 questionnaires and analyzed by using binary stepwise logistic regression. In Study II, spouses’ PTG and its associated factors were explored. Data were collected through 312 questionnaires and analyzed by using multiple regression analysis. Study III explored the actor effects and partner effects of perceived social support on PTG among couples where the woman had been diagnosed with GC. Data were collected with 126 couples using questionnaires and analyzed by using Structural Equation Modeling. Study IV described the perceived professional benefits and explored the association between perceived professional benefits, sense of coherence, and coping strategies in RNs caring for women diagnosed with GC. Data were collected with 250 RNs using questionnaires and analyzed by using multiple regression analysis.The results indicate that women’s self-disclosure was positively associated with their PTG. Confrontation coping strategies, avoidance coping strategies, problem-focused coping strategies (e.g., active coping, instrumental support, and planning), and dysfunctional coping (e.g., denial, behavioral disengagement, self-distraction, and venting) were positively associated with perceived growth. Perceived social support was positively associated with PTG in both women diagnosed with GC and their spouses. Spouses’ perceived social support was positively associated with women’s perceived social support and women’s PTG. In addition, sense of coherence was positively associated with RNs’ perceived professional benefits.Based on the findings from this thesis, it is concluded that RNs need to encourage these women and their spouses to communicate their feelings, concerns, and supportive care needs, with other family members and loved ones. RNs also needs to pay more attention to the spouses’ supportive care needs, so that they are able to better support these women. It was shown that integrating effective coping strategies into existing cancer care practice may help couples to cope with the challenges related to GC. Furthermore, RNs should consider women and their spouses as a whole unit to provide effective care, and to help couples as a unit to re-evaluate their understanding of what really matters in their life. In addition, there is a need to help RNs to promote the nurse–patient relationship and a sense of belonging to the work team in their nursing practice.
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| 3. |
- Johansen, Kine
(författare)
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Towards an evidence-based assessment of early motor performance in the child health services : Psychometric properties and clinical utility of the Structured Observation of Motor Performance in Infants
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The Swedish child health services (CHS) have a unique position in that they reach almost all children 0-6 years of age. The child health nurse has the main responsibility for developmental surveillance. Twelve scheduled visits with the nurse during the child’s first year of life make this an ideal setting to systematically identify infants with motor problems, ranging from asymmetric head positioning that may lead to plagiocephaly to more severe forms such as cerebral palsy (CP). However, the CHS lack evidence-based methods to assess motor development.The Structured Observation of Motor Performance in Infants (SOMP-I) assesses motor performance in two domains, i.e. level of motor development and quality of motor performance. SOMP-I is quick, non-invasive, requires minimal handling, and is suitable for a busy clinical setting when applied by physiotherapists. Given the importance of early detection, the increased likelihood of detecting motor problems when using evidence-based assessment methods and the key role of nurses within the CHS, the overall aim of this thesis was investigate the psychometric properties and clinical utility of SOMP-I when used by child health nurses. Furthermore, we aimed to establish the ability of SOMP-I to detect CP.Our results show that child health nurses can reliably assess the level of motor development in infants using SOMP-I. More variability was found when they assessed the infants’ quality of motor performance. Although the nurses expressed concern about introducing a more time-consuming assessment in an already tight schedule, they were able to integrate the SOMP-I assessment in routine care. The nurses reported that barriers to using SOMP-I were mostly logistic and practical in nature, and they pointed out the necessity of education and practice in order to become proficient assessors. Using SOMP-I appears to have supported the nurses in the decision-making process regarding motor performance in routine care. SOMP-I detected CP during the first months of life in neonatal intensive care recipients.To our knowledge, these studies are the first to evaluate child health nurses’ assessment of early motor performance using an evidence-based assessment method in routine care. The results are promising, but further research is warranted.
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| 4. |
- Eklund, Rakel
(författare)
-
Barns erfarenheter av ”the Family Talk Intervention” : Att leva med en svårt sjuk förälder som vårdas inom specialiserad palliativ hemsjukvård
- 2020
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- När en förälder i en barnfamilj får en livshotande sjukdom förändras livet för allai familjen. Barn som lever i denna situation rapporterar att de upplever oro och skuld relaterat till förälderns sjukdom. Dessutom har barnen en ökad risk för psykisk ohälsa. Brist på kommunikation inom familjen om sjukdomen och ämnen relaterade till den, har visat sig ha en negativ påverkan på hälsan. Trots detta finns endast ett fåtal stödinterventioner utvärderade för barnfamiljer i palliativ vård, och ännu färre utvärderade utifrån barns erfarenheter. The Family Talk Intervention (FTI) är en familjecentrerad intervention, med barnen i fokus, som visat på positiva effekter gällande sjukdomsrelaterad information och ökad kommunikation för barnfamiljer inom psykiatrisk och somatisk vård. Det övergripande syftet med denna avhandling var att utforska barns erfarenheter av FTI och att leva med en svårt sjuk förälder som vårdas inom specialiserad palliativ hemsjukvård. Avhandlingen påvisar att de flesta barnen ville veta mer om sin förälders sjukdom. De yngre barnen rapporterade svårigheter både med att berätta om, och med att visa hur de själva mådde för någon i sin familj. De barn som deltog i FTI uppskattade strukturen och innehållet, de kände sig sedda, hörda och uppmärksammade under FTI, vilket skapade en känsla av tillit och trygghet.Alla barn blev lyssnade till och fick stöd att uttrycka både svårigheter och faktorer som kunde underlätta för dem. Under interventionen var det dock endast för ett fåtal barn som deras synpunkter och åsikter togs i beaktan, i enlighet med artikel 12 i barnkonventionen. De flesta barn rapporterade dock att FTI ökade kunskaperna om förälderns sjukdom och att det blev lättare att kommunicera med sina föräldrar. Genom sitt deltagande i FTI kunde barnen förbereda sig inför framtida sjukdomsrelaterade händelser, och hantering av konflikter underlättades.Resultatet visar att de behov barnen hade innan deltagande i FTI till stor del tillgodosågs under deltagandet. FTI innehar dock en struktur som ger föräldrarnas perspektiv större utrymme än barnens. Barnens perspektiv behöver således tas i beaktan i större utsträckning i syfte att det stöd som ges till dessa barn verkligen är till för dem. FTI tycks trots detta vara genomförbart och betydelsefullt för de barn som deltagit.
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| 5. |
- Gimbler Berglund, Ingalill
(författare)
-
Developing guidelines in nursing care of children with Autism Spectrum Disorder in high technology health care settings
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction. The high technology environment such as a radiology and anaesthesia department in a typical health care setting can many times be a frightening environment for children. Children with neurodevelopmental disorders, such as Autism Spectrum Disorder (ASD), have problems with communication and social interaction. They are dependent on routines and can have higher sensitivity to sensory stimuli than other children. These children are one group who constitutes special challenges in reducing anxiety and creating participation in a high technology environment. This can make them prone to frightening encounters in health care settings if not cared for with special consideration.Aim: The overall aim of this thesis was to audit and enhance the care of children in a high technology environment in the health care system with a focus on children with Autism Spectrum Disorder.Methods: A descriptive design was used with both qualitative and quantitative methods. In Study I, 32 nurse anaesthetists were interviewed to explore the actions and experiences of caring for children in a high technology environment using a qualitative method, known as the Critical Incident Technique (CIT). In the two following studies (Study II, III) a cross-sectional design was used and two national surveys were performed to obtain knowledge on the status in Sweden regarding the care of children with ASD in high technology environments. Sixty-eight anaesthesia departments, 38 paediatric departments and 86 radiology departments responded to the survey. Descriptive statistic was used for the answers apart from the comments part of the questionnaire where qualitative content analysis was used. Due to the limited existence of guidelines in these environments, the creation ofevidence-based guidelines was performed in Study IV, using a Delphi method. The Delphi study was based on information gleaned from the previous studies and from the literature, and 21 experts identified in Study II and III were the expert panel developing the guidelines.Result: Nurses identified children with special needs such as children with ASD as a vulnerable group in a high technology environment (Study I). Seven departments in the anaesthesia context had guidelines for caring for children with ASD in the perioperative context. In the other departments, the care of children with ASD was dependent on the knowledge of the nurse presently working there (Study II). None of the radiology departments in Sweden had guidelines on how to care for children with ASD going through a radiographic examination without anaesthesia (Study III). As a result of Study I, II and III, the need for structured guidelines for caring for children with ASD in a high technology context was identified and a set of guidelines and a checklist was created. The guidelines relate to the organisational structure for the care of children with deficits in social interaction, communication, sensory sensitivity and dependence on routines. The checklist relates to gleaning information about the specific child to be able to give person-centred care based on the specific characteristic of the child (Study IV).Conclusion: Nurses working in a high technology environment in health care have diverse experiences of preventing anxiety in children with ASD coming for a challenging procedure. There are a limited number of evidence-based guidelines to decrease anxiety and to create participation in this group ofchildren. Evidence-based guidelines were created as a tool for enhancing person-centred care in a high technology environment for this group of children. The fact that several problems are assembled under one disorder makes ASD a useful condition to have as a basis for formulating national guidelines. Guidelines that cater for the care of children with ASD in a high technology environment using a person-centred approach may also extend to the care for children with other neurodevelopmental disorders that exhibit some of the same problems as children with ASD.
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| 6. |
- Valan, Lotha, 1970-
(författare)
-
Barnhälsovårdens förändrade roller och behov av digital utveckling
- 2023
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Bakgrund: Den svenska barnhälsovården är frivillig och kostnadsfri, och de flesta svenska familjer följer programmet. Den är dock inte jämlikt fördelad över landet och kan därför behöva utvecklas med fler digitala element och bli mer familjefokuserad. Många, särskilt kvinnor, beskrivs behöva mycket stöd under övergången till föräldraskap och uppskattar professionell hjälp för att hantera känslomässig och psykosocial stress. Familjefokuserad omvårdnad ligger till grund för omvårdnadspraktiker inom barnhälsovården, vilket innebär att specialistsjuksköterskan skapar vård tillsammans med familjen och tar vara på alla kompetenser på bästa sätt. Att involvera föräldrarna i utvecklingen av barnhälsovården är därmed av yttersta vikt.Syfte: Det övergripande syftet var att utröna hur föräldrar och Barnavårdscentralensspecialistsjuksköterskor (BVC-sjuksköterskor) uppfattar och använder Internet som en källa för hälsokompetens, samt att utvärdera effekten av en digital pilotinterventionutvecklad i samarbete med föräldrar med målet att minska föräldrastress, öka hälsolitteracitet och tillfredsställelse med barnavårdscentralen (BVC).Metoder: Kvalitativa (I, III), mixade (II) och kvantitativa (IV) metoder baserade på intervjudata, gruppdiskussioner och frågeformulär användes i de fyra studierna som syftade till att; I) beskriva BVC-sjuksköterskors erfarenheter och åsikter om föräldrars internetanvändning, II) beskriva hälso- och barnutvecklingsrelaterade sökmönster på internet hos föräldrar till friska barn och hur informationen användes i kontakter med barnhälsovården (BHV), III) beskriva föräldrars behov och förväntningar på digitalt stöd i samband med barnhälsovård, och slutligen IV) utvärdera effekten av en digital pilotintervention riktad till föräldrar, avseende föräldrars stress och eHälsolitteracitet. Kvalitativa data analyserades med hjälp av kvalitativ innehållsanalys och kvantitativa data med beskrivande och jämförande statistiska metoder.Resultat: Studie I visade att föräldrars internetanvändning påverkade BVC-sjuksköterskors arbete på olika sätt. Internet ansågs underlätta vård, tillgång och tillhandahållande men kunde också komplicera den professionella rollen och prestationen, vilket innebar att de upplevde ett imperativ för en förändrad roll som BVC-sjuksköterskor. I studie II framkom att föräldrar i mycket hög grad sökte på Internet efter hälsorelaterade ämnen, och resultaten belyser också frågan om svårigheterna att bedöma källornas pålitlighet. Studien visade också att Internet kunde stärka föräldrarna med ny kunskap och stödja deras förmåga till egenvård, men att denna kunskap å andra sidan också oroade dem och gjorde dem osäkra i sin föräldraroll. Studie III, som rapporterade om föräldrars behov av och förväntningar på digitalt stöd, visade att de ville bli mer självständiga i sitt föräldraskap men fortfarande behövde stöd och meningsfulla relationer. Viktiga aspekter, förutom förbättrad tillgänglighet som efterfrågades var ökad tillit långsiktiga relationer och stärkt oberoende. Studie IV visade att den digitalasupport-intervention inte gav de effekter på föräldrastress och e-hälsolitteracitet som förväntades, även om tendenser kunde identifieras. Detta ansågs främst bero på en alltför kort genomförandeperiod med alltför få deltagare, då det visades att endast en femtedel av familjerna i interventionsgruppen använde supporten, resten tycktes intebehöva den eller hade kanske ännu inte upptäckt nyttan av den.Slutsats: Den digitala eran utmanar både föräldrar och BVC-sjuksköterskor. Digitalt stöd som utvecklas tillsammans, dvs där BVC-sjuksköterskor och föräldrar i samarbete kommer överens om hur, när och om vilka ämnen denna typ av stöd och kommunikation ska omfatta, kan dock upplevas som meningsfullt. Ett genomförande i större omfattningskulle öka tillgängligheten, samtidigt stärka föräldrarnas egenmakt och leda till mer långsiktiga relationer med andra föräldrar. Implementerat klokt bland fler deltagare och över längre perioder är det möjligt att den digitala supporten också kan ha mer positiva effekter på tillfredsställelse med BHV samt på minskad föräldrastress och ökad eHälsolitteracitet.
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| 7. |
- Valan, Lotha
(författare)
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Föräldrars användning av Internet för rådgivning avseende sina friska barns hälsa och utveckling och dess inverkan på Barnhälsovårdens konsultativa arbete : En studie i Svensk Barnhälsovård
- 2020
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Licentiatavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Att bli förälder är en livsomvälvande händelse som kan vara både glädjande och skrämmande. Som förälder ansvarar man för en annan människa där man i vissa fall behöver ny information, kunskap och råd för att leva upp till de nya kraven som en förändrad familjesituation kräver. Förmågan att tillgodogöra sig information, kunskap och råd kan relateras till begreppet hälsolitteracitet som berör hur personer förstår och tillgodogör sig hälsorelaterad information. Den svenska barnhälsovårdens mål är att främja barns hälsa och utveckling och förebygga ohälsa hos barn, samt stödja föräldrar i föräldrarollen. Barnhälsovårdens sjuksköterskor följer barnets hälsa och utveckling till dess att barnet fyller fem år och är en viktig del i stöttningen av föräldrarna. De flesta av dagens föräldrar är födda i den digitala generationen och Internet är en naturlig källa till information och ökad kunskap. Föräldrarnas hälsolitteracitet kan inverka på hur internetinformationen påverkar dem och deras agerande för att möta barnens behov. I nuläget är litet känt om hur informationsöverflödet från digitala källor som Internet används av föräldrar och i interaktionen med barnhälsovården. Denna licentiatavhandlings syfte är att generera ökad kunskap om hur föräldrar använder Internet för hälsorelaterad information relaterat till deras 0–6 åriga friska barn och hur detta kan påverka dem själva samt om och i så fall, hur detta inverkar på barnavårdssjuksköterskans konsultativa arbete. I licentiatavhandlingen ingår två delstudier: Delstudie I genomfördes som en kvalitativ intervjustudie med sjuksköterskor (n=20) verksamma inom Barnhälsovården. Syftet var att beskriva deras erfarenheter och uppfattningar om föräldrars internetanvändning. I resultatet framkom tre kategorier som belyste syftet: Det framkom att ”Internet underlättar vård samt tillgång och tillgänglighet av vård och vårdinformation”, vidare att ” Internet gör yrkesutövande mer komplext” samt till sist uttrycktes det ”Ett behov av förändrad yrkesroll för barnhälsovårdssjuksköterskan”. I delstudie II genomfördes en enkätundersökning med föräldrar (n=687) som hade barn inskrivna på barnhälsovården inom en region i norra Sverige. Syftet var att beskriva föräldrars internetanvändning för råd eller information relaterat till hälsa och barns utveckling för deras friska barn samt hur informationen användes i kontakten med Barnhälsovården. Nästan alla föräldrar (n=686), uppfattade att Internet är en bra informationskälla för råd och information om barns hälsa och utveckling, men de uttryckte osäkerhet inför mängden av information samt kring den egna förmågan att söka, sortera och värdera funnen information. I resultatet sågs också att många föräldrar 81,7% (n = 561) önskade ha stöd och vägledning av sin barnhälsovårdssjuksköterska avseende internetinformation och webbsidor. Licentiatavhandlingens resultat visar att föräldrar har ett behov av stöd och att barnhälsovårdens sjuksköterskor genom den uppbyggda relationen dem emellan både kan vägleda och ge råd för att stödja föräldrar. Genom att stödja föräldrar på detta sätt kan barnhälsovården bidra till att öka föräldrars hälsolitteracitet och därmed även deras hälsokompetens. Barnhälsovårdens medarbetare behöver kompetensutveckling och verktyg för att kunna stödja föräldrar mot större hälsolitteracitet och därigenom även en högre hälsokompetens. Det ses som viktigt att utveckla fler kvalitetssäkrade digitala verktyg som komplement till dagens Barnhälsovård baserad på personliga möten. Verktygen skulle kunna bestå i att stötta föräldrar till att söka och värdera information från evidensbaserade källor, samt att införliva chatt och videokonferensmöjligheter mellan föräldrar och barnhälsovårdssjuksköterskorna också inom offentlig sjukvård.
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| 8. |
- Wu, Xi Vivien
(författare)
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Holistic clinical assessment for undergraduate nursing students
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- A major focus in nursing education is on the judgement of clinical performance, and it is a complex process due to the diverse nature of nursing practice. Difficulties in the development of valid and reliable assessment measures in nursing competency continue to pose a challenge in nursing education. A holistic approach in the assessment of competency comprises knowledge, skills and professional attitudes, wherein the notion of competency incorporates professional judgement and management skills in the clinical situation. Therefore, the thesis aims to develop a holistic clinical assessment tool with a reasonable level of validity and reliability to meet the needs of clinical education.The conceptual framework underlying this research is formed by establishing a theoretical connection between the practice of learning, and of pedagogy and assessment. This research consists of five studies. In Study I, a systematic review was conducted to explore the current assessment practices and tools for nursing undergraduates. In Studies II, III and IV, a qualitative approach with focus group discussions was adopted to explore the views of final-year undergraduate nursing students, preceptors, clinical nurse leaders and academics on the clinical assessment. Based on the multiple perspectives, it therefore addresses concerns in clinical assessment. In Study V, a holistic clinical assessment tool was developed, for which a psychometric testing was conducted.The systematic review indicated that limited studies adequately evaluate the psychometric properties of the assessment instrument. The qualitative studies have raised an awareness of professional and educational issues in relation to clinical assessment. Workload, time, availability of resources, adequate preparation of preceptors, and availability of valid and reliable clinical assessment tools were deemed to influence the quality of students’ clinical learning and assessment. In addition, the presence of support systems and formal educational programs for preceptors influenced their preparation and self-confidence. Nursing leaderships in hospitals and educational institutions have a joint responsibility in shaping the holistic clinical learning environment and making holistic clinical assessment for students. The involvement of all stakeholders in the development of a valid and reliable assessment tool for clinical competency is also essential to the process. The Holistic Clinical Assessment Tool (HCAT) was developed by the author based on the systematic review, qualitative findings and the core competencies of registered nurse from the professional nursing boards. The HCAT consists of 4 domains and 36 assessment items. Furthermore, testing of the psychometric properties indicated that the HCAT has satisfactory content validity, construct validity, internal consistency and test-retest reliability.In conclusion, the HCAT is meritorious in that it carries the potential to be used as a valid measure to evaluate clinical competency in nursing students, and provide specific and ongoing feedback to enhance the students’ holistic clinical learning experience. The HCAT not only functions as a tool for self-reflection for the students, but also guides the preceptors in clinical teaching and assessment. In addition, the HCAT can be used for peer-assessment and feedback. It is imperative that the clinical and academic institutions establish various levels of ongoing support for both students and preceptors in the process of clinical assessment.
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| 9. |
- Darcy, Laura
(författare)
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The everyday life of young children through their cancer trajectory
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The young child’s experiences of living with cancer are crucial to providing evidence based care. The overall aim of this thesis was to explore and describe experiences of health and functioning in the everyday life of young children with cancer, over a three year period from diagnosis, to provide insights and suggestions to improve evidence based care.The first and second papers in the series of four for this thesis used a qualitative content analysis to describe the child’s experiences shortly after diagnosis and six and 12 months later. The third paper used mixed methods to identify a comprehensive set of ICF-CY codes describing everyday health and functioning in the life of the young child with cancer. The fourth paper used the identified comprehensive set of ICF-CY codes to follow changes in everyday health and functioning over the study’s entire three year period from diagnosis.Entry into the health-illness transition was characterised by trauma and isolation. Health and functioning in everyday life was utterly changed and physical difficulties were at their peak. The passage through transition was characterised by an active striving on the part of the child to make a normal everyday life of the cancer experience. Difficulties affecting health and functioning in everyday life decreased and changed during the trajectory, though feelings of loneliness prevailed. A new period of stability in the child’s post treatment life was seen from two years after diagnosis and onwards, with (re)-entry to preschool/school and other social activities. However, an increase in difficulties with personal interactions with others and access to, and support from healthcare professionals was seen. Variances were seen within individual children’s’ trajectories.In summary it can be stated that the everyday life of young children with cancer changes over time and health care services are not always in phase with these changes. Young children living with cancer want to be participatory in their care and to have access to their parents as protectors.They need access to and ongoing contact with peers and preschool. Although physical difficulties in living an everyday life with cancer reduce over time, new difficulties emerge as the child post cancer treatment re-enters society. A structured follow-up throughout the cancer trajectory and not just during active treatment is necessary. A child-centered philosophy of care would guide the child towards attainment of health and well-being.Both the child’s own perspective and a child’s perspective as described by adults caring for them should be seen on a continuum, rather than as opposites. This view could help ensure that young children become visible and are listened to as valuable contributors to care planning. Knowledge of health-illness transition can be useful in illustrating everyday health and functioning through long term illness trajectories.
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| 10. |
- Huus, Karina, 1968-
(författare)
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Weight gain in children : possible relation to the development of diabetes
- 2009
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: The prevalence of overweight and obesity among children has increased the last decades and is now defined as a global epidemic disease by the World Health Organization. Also the incidence of type 1 diabetes has increased and there are some hypothesises that argue there is a connection between overweight/obesity and type 1 diabetes.Aim: The general aim of this thesis was to study factors contributing to the development of overweight and obesity among children and to study possible relations to the development of diabetes.Method: All Babies in Southeast Sweden, ABIS, is a prospective cohort study. The study includes all babies who were born in southeast Sweden between Oct 1st 1997 until Oct1st 1999 and the design was to follow them up to school age in ABIS I and to follow them until 14 years in ABIS II, of the eligible 74 % entered the study. The families have answered questionnaires and biological samples were taken mainly from the children at the different time points: birth, 1 year, 2.5 years, 5 years and 8-9 years. In this thesis studies have been made including the whole cohort, but some studies have also been made involving only a part of the children.Results: The prevalence of overweight and obesity among children in the ABIS study was 12.9% overweight and 2.5 % obese at 5 years of age. One risk factor which appeared to have a great impact on the development of overweight and obesity at 5 years of age was the child’s own BMI at an early age and also the heredity for overweight/ obesity and the heredity for type 2 diabetes. If the father had a university degree, the child was less likely to be obese at 5 years of age. Other factors, such as the parents´ age, if the child had any siblings, and if the child lived with a single parent, did not show any significant correlation to the child’s BMI at 5 years of age.Early nutrition has been studied and no correlation could be found between breastfeeding less than 4 months and the development of overweight/obesity at 5 years of age. The parents answered questions about how frequent the child ate different food at 2.5 years and at 5 years. Intake of sweet lemonade was the only single food which was correlated to a higher BMI in 5 years old children. Porridge seemed to be protective against overweight/ obesity. In one of the studies the physical activity was measured by a step counter. The fewer steps the children were taking, the higher BMI and waist circumference they had. Low physical activity was also associated with a higher C-peptide value and decreased insulin sensitivity. Children who spent more time in front of TV/video had a higher fasting blood glucose value.Conclusions: A strong factor for the development of overweight and obesity among children is the child’s own BMI at an early age and also its heredity for overweight/ obesity and the heredity for type 2 diabetes. Early nutrition did not show any obvious correlations with overweight and obesity at 5 year old children. Low physical activity was associated with higher fasting C-peptide value and decreased insulin sensitivity. Low physical activity may cause β-cell stress which might contribute to an autoimmune process in individuals genetically predisposed to autoimmunity and, thereby, to the increasing incidence of Type 1 diabetes in children.
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