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Att vara förälder till barn med CAH - utmaningar, strategier och stöd

Lindström, Anders LU (2015) PSPT02 20142
Department of Psychology
Abstract (Swedish)
Studiens syfte var att undersöka vilka utmaningar som upplevs av föräldrar till barn med kongenital binjurebarkshyperplasi (CAH). Vidare undersökte studien hur föräldrarna hanterade dessa utmaningar, samt vad de upplevt som stöttande och hjälpsamt från andra, så som exempelvis vårdpersonal. Studien utgick från en explorativ ansats där semistrukturerade intervjuer med tolv föräldrar till barn med CAH utgjorde datamaterial. Intervjumaterialet analyserades utifrån en ricouersk hermeneutisk epistemologi och med hjälp av systematisk textkondensering (STK) och tematisk analys (TA). Resultatet sammanställdes i fyra huvudteman och fjorton underteman: Den första reaktionen (Förvirring, oro och skiftande känslor, Är det en pojke eller en flicka?,... (More)
Studiens syfte var att undersöka vilka utmaningar som upplevs av föräldrar till barn med kongenital binjurebarkshyperplasi (CAH). Vidare undersökte studien hur föräldrarna hanterade dessa utmaningar, samt vad de upplevt som stöttande och hjälpsamt från andra, så som exempelvis vårdpersonal. Studien utgick från en explorativ ansats där semistrukturerade intervjuer med tolv föräldrar till barn med CAH utgjorde datamaterial. Intervjumaterialet analyserades utifrån en ricouersk hermeneutisk epistemologi och med hjälp av systematisk textkondensering (STK) och tematisk analys (TA). Resultatet sammanställdes i fyra huvudteman och fjorton underteman: Den första reaktionen (Förvirring, oro och skiftande känslor, Är det en pojke eller en flicka?, Stöd och hjälp), Den första tidens utmaningar (Att bo i vardagsrumssoffan, Osäkerhet och livsomställning, Det blir bättre, det går över), Vardaglig oro och riskhantering (Utvidgad riskhantering, Relationen till vården, Att lämna över ansvar till barnet, Ensamhet och acceptans), Utmaningar rörande icke-typisk könsutveckling (Att besluta om operation, Att förhålla sig till forskning och statistik, Att tala med barnet, Oro för omgivningens reaktioner). Resultatet relaterades till tidigare forskning på föräldrablivande till barn med kroniska sjukdomar, respektive icke-typisk könsutveckling. Vidare relaterades resultatet till teorier om kris och krisstöd, bedömning och coping samt salutogenes och känsla av sammanhang. (Less)
Abstract
The aim of this study was to investigate the challenges experienced by parents with children who had congenital adrenal hyperplasia (CAH). It also investigated how the parents dealt with these challenges, as well as what they experienced as supportive and helpful from others, for example healthcare professionals. The study was based on an exploratory approach where the data was obtained through semi structured interviews with twelve parents who had children with CAH. The material was analysed on the basis of a ricouerian hermeneutic epistemology, and by the use of systematic text condensation (STC) and thematic analysis (TA). The result were put together in four master themes and fourteen subthemes: The first reaction (Confusion, worry and... (More)
The aim of this study was to investigate the challenges experienced by parents with children who had congenital adrenal hyperplasia (CAH). It also investigated how the parents dealt with these challenges, as well as what they experienced as supportive and helpful from others, for example healthcare professionals. The study was based on an exploratory approach where the data was obtained through semi structured interviews with twelve parents who had children with CAH. The material was analysed on the basis of a ricouerian hermeneutic epistemology, and by the use of systematic text condensation (STC) and thematic analysis (TA). The result were put together in four master themes and fourteen subthemes: The first reaction (Confusion, worry and shifting emotionts, Is it a boy or a girl?, Support and help), Initial challenges (To live in the living room couch, Insecurity and change of life, It gets better, it will pass), Everyday worries and risk management (Expanding risk management, The relationship to health care professionals, Letting the child take responsibility, Loneliness and acceptance), Challenges in regard to atypical sex development (Making decisions about surgery, How to deal with research and statistics, Talking with the child, Worries about the reactions of others). The result was compared with previous research on parenting children with chronic illness, as well as atypical sex development. Theories on crises intervention, coping and sense of coherence were used to further the understanding of the result. (Less)
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author
Lindström, Anders LU
supervisor
organization
course
PSPT02 20142
year
type
H3 - Professional qualifications (4 Years - )
subject
keywords
kongenital binjurebarkshyperplasi, CAH, intersex, tillstånd med avvikande könsutveckling, DSD, kronisk sjukdom, föräldraskap, kris, krisstöd, salutogenes, känsla av sammanhang, KASAM, coping
language
Swedish
id
5014274
date added to LUP
2015-01-28 16:27:49
date last changed
2015-01-28 16:27:49
@misc{5014274,
  abstract     = {The aim of this study was to investigate the challenges experienced by parents with children who had congenital adrenal hyperplasia (CAH). It also investigated how the parents dealt with these challenges, as well as what they experienced as supportive and helpful from others, for example healthcare professionals. The study was based on an exploratory approach where the data was obtained through semi structured interviews with twelve parents who had children with CAH. The material was analysed on the basis of a ricouerian hermeneutic epistemology, and by the use of systematic text condensation (STC) and thematic analysis (TA). The result were put together in four master themes and fourteen subthemes: The first reaction (Confusion, worry and shifting emotionts, Is it a boy or a girl?, Support and help), Initial challenges (To live in the living room couch, Insecurity and change of life, It gets better, it will pass), Everyday worries and risk management (Expanding risk management, The relationship to health care professionals, Letting the child take responsibility, Loneliness and acceptance), Challenges in regard to atypical sex development (Making decisions about surgery, How to deal with research and statistics, Talking with the child, Worries about the reactions of others). The result was compared with previous research on parenting children with chronic illness, as well as atypical sex development. Theories on crises intervention, coping and sense of coherence were used to further the understanding of the result.},
  author       = {Lindström, Anders},
  keyword      = {kongenital binjurebarkshyperplasi,CAH,intersex,tillstånd med avvikande könsutveckling,DSD,kronisk sjukdom,föräldraskap,kris,krisstöd,salutogenes,känsla av sammanhang,KASAM,coping},
  language     = {swe},
  note         = {Student Paper},
  title        = {Att vara förälder till barn med CAH - utmaningar, strategier och stöd},
  year         = {2015},
}