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From childhood to adult life with juvenile idiopathic arthritis (JIA): a pilot study.
Nordic Council of Ministers, Nordic School of Public Health NHV.
Nordic Council of Ministers, Nordic School of Public Health NHV.
2007 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 29, no 6, 445-52 p.Article in journal (Refereed) Published
Abstract [en]

PURPOSE: To explore the experiences of the health service provision in the transition process from childhood to adult life from the perspective of young patients with juvenile idiopathic arthritis (JIA) and health professionals working in this field.

METHOD: Two groups of young persons with JIA and two groups of health professionals were interviewed in focus groups. The data were analysed according to approved guidelines for qualitative analysis.

RESULTS: 'Capability to lead a meaningful adult life' emerged as a core category; capability as a consequence of 'being enabled' from the youths' point of view, and 'enabling the young patients' from the health professionals' perspective. Preparation for the transition and transfer process was perceived as inadequate and seemed dependent on enthusiastic health professionals both in the children's and adult wards. Suggestions for formal improvements were required in four main areas.

CONCLUSION: This pilot study has identified inadequacies in the transition management provided for young people with JIA. Acceptance of the young persons as active participants in their own transition process might strengthen these young persons' experience of an autonomous identity and enable participation socially and in society, thus enhancing the ability to achieve a meaningful adult life. Further investigations should focus on adults living with JIA, how they lead their lives physically and psychosocially.

Place, publisher, year, edition, pages
2007. Vol. 29, no 6, 445-52 p.
Keyword [en]
Juvenile idiopathic arthritis, adolescent, adult, transition, empowerment
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:norden:org:diva-3690DOI: 10.1080/09638280600835994PubMedID: 17364799OAI: oai:DiVA.org:norden-3690DiVA: diva2:785626
Available from: 2015-02-03 Created: 2015-02-03 Last updated: 2017-12-05Bibliographically approved
In thesis
1. Living with Juvenile Idiopathic Arthritis from childhood to adult life: An 18 year follow-up study from the perspective of young adults
Open this publication in new window or tab >>Living with Juvenile Idiopathic Arthritis from childhood to adult life: An 18 year follow-up study from the perspective of young adults
2009 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background and aim: As an experienced paediatric nurse I have recognised that adolescents with persistent chronic childhood diseases fall between two chairs. International studies support this recognition. Norwegian adolescents with juvenile idiopathic arthritis are no exception. Chronic arthritis from childhood might have far-reaching consequences for the growth and development of the child, and for the family and community. The fact that a considerable proportion of children with JIA continue to have active disease and disease residua through adolescence into adulthood underlines the importance of illuminating the situation in a public-health perspective. Through this study I aim at exploring physical and psychosocial health among young adults with JIA in a life-span perspective from childhood and adolescence into adult life.

Methods: The thesis has a qualitative and a quantitative approach. Study I had an abductive explorative design. The experiences and perceptions of health-care transition were explored by focus-group interviews with young people with JIA and related health professionals respectively. Qualitative content analysis was utilised. Study II had an abductive explorative design with qualitative interviews to explore young adults’ experiences of living with JIA in a life-span perspective. Qualitative content analysis was utilised. Study III had a longitudinal deductive design. The standardised questionnaires of Health Assessment Questionnaire, General Health Questionnaire version 30, and Visual Analogue Scales of pain, fatigue, and illness were utilised to explore physical ability, psychosocial health, pain, fatigue, and illness in a cohort of patients with JIA 18.3 years after symptom-onset. Comparisons with baseline and first follow-up were performed. Data were analysed by descriptive statistics and non parametric tests. Study IV had a cross-sectional deductive design. In addition to the questionnaires utilised in study III, the questionnaire of SF-36 Health Survey and data on education, employment, need of assistive equipment at work, and use of health services the previous year were employed. Comparisons with Norwegian population- based data were performed. Data were analysed by descriptive statistics, and parametric and non parametric tests.

Findings: In study I, ability to live a meaningful and responsible adult life seemed to be a common goal. Obstacles for the young people were the nature of the disease, a lack of focus on transition processes, and overprotective parents and health professionals. Obstacles for the health professionals were lack of inter-professional and inter-institutional formal co-operation and agreed practice, and lack of competence on adolescent development and health. Study II demonstrates that living with JIA implies a constant oscillation between struggle and adjustment to an insecure everyday life and an unpredictable life course. This was expressed as bodily experiences of limitation and freedom, interpersonal experiences of being included or set on the sidelines, and intrapersonal perceptions of insecurity and confidence. Of the 55 young adults with JIA in study III, 21 reported physical disability, and 12 reported psychiatric distress within the clinical range. Furthermore, 26 patients reported illness, 27 pain, and 33 fatigue above 10 on the VAS scale (0-100). Significant correlations were found between physical disability, pain, illness and fatigue, and between psychiatric distress, pain, and fatigue. Comparisons from first to second follow-up of the cohort showed no significant changes in physical or psychosocial functioning, pain, or fatigue. In study IV, physical ability and pain were significant predictors of the average variation of physical health while psychiatric distress and female gender were significant predictors of the average variation of mental health. Impaired physical health was associated with low rates of psychiatric distress. As compared to the general Norwegian population, impaired HRQL in the physical domain was found, but not in the mental domain, and a higher level of education, but similar employment rate.

Conclusion: The four studies demonstrate complementary findings. Discrepancies between interviews and inquiries indicate that the interviews illuminate a depth and breadth of life with JIA in a life-span perspective that not is possible to unveil solely by standardised inquiries. Although persistent favourable outcomes are found physically and psychosocially from first to second follow-up, young adults with JIA reveal that life with JIA encompasses struggle and adjustment to an insecure life situation physically, psychologically, and socially.

Abstract [no]

Bakgrunn og mål: Mange års erfaring som pediatrisk sykepleier har vist meg at unge mennesker med kroniske barnesykdommer faller mellom to stoler i overgangen til voksent liv. Internasjonale studier støtter denne erfaringen, og norske ungdommer med juvenil idiopatisk artritt er ikke noe unntak. Kronisk barneleddgikt kan ha vidtrekkende konsekvenser for barnets vekst og utvikling, for familien og samfunnet for øvrig. Det faktum at mange barn fortsetter å ha aktiv sykdom og senvirkninger av sykdommen gjennom ungdomsårene og inn i voksent liv, understreker betydningen av å belyse de unges helse og livssituasjon i et folkehelseperspektiv. Gjennom denne avhandlingen ønsker jeg å undersøke fysisk, psykisk og sosial helse blant unge voksne med barneleddgikt i et livsløpsperspektiv.

Metode: Avhandlingen har en kvantitativ og en kvalitativ tilnærming. Studie I hadde en abduktiv eksplorerende design. Gjennom fokusgruppeintervjuer med respektivt unge mennesker med barneleddgikt og helsepersonell innen revmatologi ble opplevelser og erfaringer med overgangen til voksenhelsetjenesten undersøkt. Kvalitativ innholdsanalyse ble benyttet. Studie II hadde også en abduktiv eksplorerende design med kvalitative intervjuer for å utforske livet med barneleddgikt blant unge voksne i et livsløpsperspektiv. Kvalitativ innholdsanalyse ble benyttet også her. Studie III hadde en longitudinell deduktiv design. Standardiserte spørreskjemaer om fysisk funksjon (Health Assessment Questionnaire), psykososial helse (General Health Questionnaire versjon 30), og sykdomsfølelse, smerte og trøtthet (Visual Analogue Scales) ble anvendt for å undersøke selvvurdert helse blant kohorten 18.3 år etter symptomdebut. Sammenligning med baselinestudien og første oppfølging ble gjort. Deskriptiv statistikk og non parametriske tester ble benyttet i dataanalysen. Studie IV var en deduktiv tverrsnittsstudie. I tillegg til spørreskjemaene som ble benyttet i studie III, ble spørreskjemaet SF-36 Health Survey benyttet for å undersøke selvvurdert helserelatert livskvalitet. Data fra telefonintervjuet om utdanning, yrkesaktivitet, behov for hjelpemidler på jobb, og behov for helsetjenester siste året ble inkludert. Sammenligninger ble gjort med norske normdata. Deskriptiv statistikk, parametriske og non parametriske tester ble benyttet i dataanalysen.

Funn: Studie I viste at det å være i stand til å leve et meningsfylt og ansvarsbevisst voksenliv var et felles mål. Hindringer for de unge viste seg å være sykdommens natur, manglende fokus på overgangsprosessen, og overbeskyttende foreldre og helsepersonell. Hindringer blant helsepersonell var mangel på formelt samarbeid og omforent praksis på tvers av profesjoner og institusjoner, og mangel på kompetanse om ungdoms helse og utvikling. Studie II viste at livet med barneleddgikt innebærer en konstant veksling mellom kamp og tilpasning til et usikkert dagligliv og et uforutsigbart livsløp. Dette kom til uttrykk i erfaringer om kroppslige begrensninger eller frihet, interpersonlige opplevelser av å bli inkludert eller satt til side, og intrapersonlige opplevelser av usikkerhet eller trygghet. Blant de 55 unge voksne med barneleddgikt i studie III rapporterte 21 fysiske funksjonshemninger og 12 psykiatrisk distress. Videre rapporterte 26 pasienter sykdomsfølelse, 27 smerter, og 33 trøtthet med en skåring på 10 eller mer på VAS-skalaene (0-100). Signifikante korrelasjoner ble funnet mellom fysisk funksjonshemning, smerter, sykdomsfølelse og trøtthet, og mellom psykiatrisk distress, smerter og trøtthet. Sammenligninger fra første til andre oppfølging av kohorten viste ingen signifikante endringer i fysisk eller psykisk funksjonsevne, smerter eller trøtthet. Studie IV viste at fysisk funksjons-hemning og smerter var signifikante prediktorer for den gjennomsnittlige variasjonen i fysisk helse, mens psykiatrisk distress og kvinnelig kjønn var signifikante prediktorer for den gjennomsnittlige variasjonen i mental helse. Sviktende fysisk helse var ikke assosiert med psykiatrisk distress. Sammenlignet med norske normdata fant vi sviktende helserelatert livskvalitet i det fysiske domene, men ikke i det mentale domene, og høyere utdanningsnivå, men ingen forskjell i yrkesaktivitet.

Konklusjon: Funnene fra de fire delstudiene kompletterer hverandre. Diskrepansen mellom funnene fra intervjuene og spørreskjemaene belyser en bredde og dybde i opplevelsene avlivet med barneleddgikt som det ikke er mulig å avdekke bare gjennom bruk av standardiserte spørreskjemaer. Selv om funnene viser vedvarende positive utfall av sykdommen både fysisk og psykososialt fra første til andre oppfølging, viser unge mennesker med barneleddgikt at livet innebærer kamp og tilpasning til en usikker livssituasjon fysisk, psykisk og sosialt.

Place, publisher, year, edition, pages
Nordic School of Public Health NHV Göteborg, Sweden, 2009. 85 p.
Series
NHV Reports and Doctor of Public Health-Theses, ISSN 0283-1961 ; NHV Report 2009:8
Keyword
Juvenile idiopathic arthritis, adolescence, transition, life-span, self-rated health, public health, Juvenil idiopatisk artritt, ungdom, overgang, livsløp, selvvurdert helse, folkehelse
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:norden:org:diva-3694 (URN)978-91-85721-68-9 (ISBN)
Public defence
2009-11-11, Nordic School of Public Health NHV, Göteborg, Sweden, 13:00 (Norwegian)
Opponent
Supervisors
Available from: 2015-02-05 Created: 2015-02-03 Last updated: 2015-02-05Bibliographically approved

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