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Att vara förälder till barn med funktionsnedsättning: erfarenheter av stöd och av att vara professionell stödjare.
Umeå University, Faculty of Medicine, Nursing.
2005 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [sv]

Avhandlingens övergripande syfte är att tolka och beskriva innebörder av stöd, utifrån att vara förälder till barn med funktionsnedsättning och att vara professionella stödjare. Datainsamling har skett i form av berättande intervjuer med 39 föräldrar (23 mödrar och 16 fäder) och 9 professionella (7 kvinnor, 2 män) från olika verksamheter. Samtliga intervjuer har analyserats med hjälp av fenomenologisk hermeneutisk metod.

Innebörder av att vara förälder till barn med funktionsnedsättning (studie I) har tolkats som en medvetenhet om viktiga värden i livet. Barnet har ett inneboende värde som en unik person och föräldrarna strävar efter att göra sitt bästa för barnet. Denna strävan innebär att konfrontera oro, osäkerhet och rädsla i vården av barnet och andra personers nedvärdering av barnet. I föräldrarnas strävan att tillmötesgå barnets olika behov, ingår också att anpassa egna behov efter barnets. Den fördjupade förståelsen av studiens resultat är, att det handlar om en strävan att möjliggöra för barnet att leva ett gott liv.

Innebörder av att få stöd av professionella (studie II) har tolkats som att föräldrar och barn blir bekräftade som värdefulla personer och att föräldrarna uppnår trygghet och kompetens i föräldraskapet och får ett hopp för barnets framtid. Erfarenheter av att inte få stöd, medför en kamp mot de professionella, för att kräva det stöd som föräldrarna anser att de och barnet behöver.

Innebörder av att vara professionell stödjare (studie III), består av att ha personlig filosofi, som är integrerat i sättet att vara och handla som stödjare. Det innebär att vara trygg i hoppet om att det alltid går att göra något för att hjälpa, genom att söka unika lösningar i den aktuella situationen. Tillit till föräldrar som partners och att få deras tillit, samt att möjliggöra för föräldrarna att uppnå kompetens och trygghet i vården av sina barn är andra innebörder. Detta har tolkats som en frihet från att vara bunden av byråkrati och prestige och en möjlighet att vara äkta, följa sin filosofi och att vara i samklang med barn och föräldrar.

Innebörder av informellt stöd (studie IV) har tolkats som en livsberikande gemenskap, där barnet, innefattas i kärleksfulla relationer med närstående och har en naturlig plats i samhället. Att som föräldrar kunna dela glädje, oro och sorg med andra personer och att få möjlighet att uppleva lättnad och spontanitet i det dagliga livet, är andra innebörder av informellt stöd. Helhetsförståelsen

av de fyra studierna är, att stöd av professionella i sin tur är ett stöd i föräldrars etiska förpliktelse i deras strävan att möjliggöra för barnet att leva ett gott liv. Informellt stöd betyder att föräldrar och barn är inneslutna i trofasta och berikande relationer med andra.

Abstract [en]

The overarching aim of this thesis is to interpret and describe the meanings of support for parents from the context of being a parent of a child with disability. The data collection is based on narrative interviews with 39 parents (23 mothers and 16 fathers) and nine professionals (seven women and two men) from various areas in the health care system and local authority. A phenomenological hermeneutic method guided the text analyses.

The meanings of being a parent of a child affected by disability (study I) have been interpreted as awareness about important values in life. The child has an intrinsic value as a unique person and the parents are striving to do their best for their child. This striving means confronting worries, unsafeness and fear in the care of the child and confronting other persons’ devaluation of the child.

Adjusting the parents’ own needs to those of the child and orchestrating the child’s various needs are other meanings. The deepened understanding of the result of the study is that the parents are striving to enable the child a good life.

Being supported by professionals (study II) means experiences of the child and oneself as being confirmed as valuable persons. Moreover, it enables parents to gain confidence and competence in their parenthood and hope for the child’s future. Experiences of lack of support give rise to a struggle against the professionals, aimed at getting the support the parents regard as necessary for their own and their child’s needs.

The meanings of being a supporter (study III) were interpreted as being and acting according to a personal philosophy, which is integrated in the professional task, and believing that it is always possible to help by searching for unique solutions in the current situation. Trusting the parents as partners and enabling the parents to gain competence and confidence in the care of their children are further meanings. The deepened understanding of being a professional

supporter is to be in tune with one’s philosophy and the child’s and parents’ needs.

The meanings of informal support (study IV) were interpreted as experiences of being involved in true relationships with other persons. This enables the child and the parents to be in a life enriching togetherness. The interpreted whole of the studies is that being a parent of a child affected by disability means to strive for the fulfilment of the ethical obligation to enable the child to have a

good life. To be supported by professionals means receiving help to fulfil the ethical obligation. Being a professional supporter means to be and act in accordance to the unique child and parent and the present situation. Informal support means to be involved in a natural human togetherness.

Place, publisher, year, edition, pages
Umeå: Omvårdnad , 2005. , 59 p.
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 998
Keyword [en]
caring, child, child disabled, disability, family, lived experience, parent, parenthood, support, phenomenological hermeneutics
National Category
Nursing
Identifiers
URN: urn:nbn:se:umu:diva-659ISBN: 91-7305-995-1 (print)OAI: oai:DiVA.org:umu-659DiVA: diva2:144151
Public defence
2006-01-13, Aulan, Vårdvetarhuset, Umeå universitet, Umeå, 13:00 (English)
Opponent
Supervisors
Available from: 2005-12-15 Created: 2005-12-15 Last updated: 2009-11-19Bibliographically approved
List of papers
1. Striving to enable the child a good life: Meanings of being a parent of a child affected by disability
Open this publication in new window or tab >>Striving to enable the child a good life: Meanings of being a parent of a child affected by disability
Manuscript (Other academic)
Identifiers
urn:nbn:se:umu:diva-4879 (URN)
Available from: 2005-12-15 Created: 2005-12-15 Last updated: 2010-01-13Bibliographically approved
2. Being invigorated in parenthood: parents' experiences of being supported by professionals when having a disabled child.
Open this publication in new window or tab >>Being invigorated in parenthood: parents' experiences of being supported by professionals when having a disabled child.
2005 (English)In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, Vol. 20, no 4, 288-297 p.Article in journal (Refereed) Published
Abstract [en]

The purpose of the study was to know the meaning of parents' experiences of being supported by professionals when having a child with disability. Data were obtained through unstructured interviews with 16 parents within 10 families and analyzed by a phenomenological-hermeneutic approach. Parents narrated experiences of being supported and not being supported, and the findings are presented as contrasting meanings. Being supported by professionals means gaining confidence as a parent and having the child seen as valuable. This is interpreted as being invigorated in parenthood, where sharing the mutual task and goal, which is the child's best, with professionals is a crucial aspect. The meaning of experiences of lack of support illuminates the consequences for the entire family's well-being and the struggle parents experience to gain confidence as parents and recognition of the child as valuable.

Keyword
Adaptation; Psychological, Adolescent, Adult, Attitude of Health Personnel, Attitude to Health, Child, Child; Preschool, Cooperative Behavior, Disabled Children/psychology, Empathy, Female, Health Services Needs and Demand, Holistic Health, Humans, Male, Narration, Nursing Methodology Research, Parents/education/*psychology, Power (Psychology), Professional-Family Relations, Questionnaires, Self Efficacy, Social Support, Sweden
Identifiers
urn:nbn:se:umu:diva-6749 (URN)10.1016/j.pedn.2005.04.015 (DOI)16030510 (PubMedID)
Available from: 2007-12-17 Created: 2007-12-17 Last updated: 2009-11-19Bibliographically approved
3. Being in tune with oneself, children, and parents: meanings of being a supporter to families with children who disabilities as narrated by parent-selected professionals.
Open this publication in new window or tab >>Being in tune with oneself, children, and parents: meanings of being a supporter to families with children who disabilities as narrated by parent-selected professionals.
2005 (English)In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, Vol. 20, no 3, 214-223 p.Article in journal (Refereed) Published
Abstract [en]

The importance of giving professional support to parents who have a child with a disability is well documented in the research literature. Research from parents' perspective shows however that how support is delivered for an entire family's well-being is crucial. The aim of this study was to illuminate the meanings of being a supporter as narrated by nine parent-selected professionals. The findings show that having a personal and professional philosophy on being and doing is crucial when helping parents care for their child. Being confident that it is always possible to help means to seek unique solutions for each child and family. Being a trustworthy partner of parents means to trust in parents as invaluable partners as well as to exert efforts to gain the parents' trust, seeing parents as both persons and the child's carer, and being sensitive to parents' vulnerability. Enabling parents to gain competence and confidence in parenthood embraces the knowledge and skills necessary for the competence as their child's carer and respecting parental authority. The findings are interpreted as being in tune with oneself, children, and parents--which in this study implies freedom from being confined by bureaucracy, prestige, and institutional norms but freedom to be authentic and act according to personal philosophies.

Keyword
Adaptation; Psychological, Attitude of Health Personnel, Attitude to Health, Child, Clinical Competence/standards, Cooperative Behavior, Developmental Disabilities/prevention & control/*psychology, Health Knowledge; Attitudes; Practice, Helping Behavior, Humans, Narration, Nursing Methodology Research, Parents/*psychology, Pediatric Nursing/organization & administration, Pediatrics/organization & administration, Philosophy; Medical, Philosophy; Nursing, Professional Role, Professional-Family Relations, Questionnaires, Self Efficacy, Social Support, Trust
Identifiers
urn:nbn:se:umu:diva-6748 (URN)10.1016/j.pedn.2005.02.010 (DOI)15933661 (PubMedID)
Available from: 2007-12-17 Created: 2007-12-17 Last updated: 2009-11-19Bibliographically approved
4. A life enriching togetherness: Meanings of informal support when being a parent of a child with disability
Open this publication in new window or tab >>A life enriching togetherness: Meanings of informal support when being a parent of a child with disability
Manuscript (Other academic)
Identifiers
urn:nbn:se:umu:diva-4882 (URN)
Available from: 2005-12-15 Created: 2005-12-15 Last updated: 2010-01-13Bibliographically approved

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