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Information till föräldrar som har barn med cancer
Umeå University, Faculty of Medicine, Department of Nursing.ORCID iD: 0000-0001-8801-5423
2013 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [sv]

Bakgrund. Föräldrar till barn som har cancer upplever en livssituation som präglas av osäkerhet och oro och de ställs inför sociala och känslo­mässiga utmaningar. Jämfört med föräldrar till friska barn, upplever de också högre stress och drabbas i större utsträckning av posttraumatiska stres­symptom. Trots att information om barnets sjukdom är ett centralt behov för föräldrarna, upplever de otillfredsställelse med den information som ges.

Syfte. Syftet med denna avhandling var att inom barnonkologisk vård beskriva vårdares och föräldrars upplevelser av information, studera deras inbördes interaktion samt beskriva upplevelser och effekter av en intervention för personcentrerad information till föräldrar.

Metod. I delstudie I–III användes fokusgruppintervjuer (I, II), individ­uella intervjuer (II, III) och deltagande observationer (III). Deltagarna bestod av 20 vårdare (I), 14 föräldrar till barn med cancer (II) respektive 25 vårdare och 25 föräldrar (III). Data analyserades med kvalitativ innehållsanalys (I, II) och diskurspsykologi (III). I delstudie IV testades en intervention för per­son­cen­tre­rad information på åtta föräldrar med hjälp av en experimentell single-case-design. Data samlades in med kvalitativa intervjuer och internetenkäter. Upplevd stress, kroppsliga symptom på stress, ångest, nedstämdhet och tillfredsställelse med information var utfallsmått.

Resultat. I delstudie I bestod resultatet av två teman: anpassa mängden information till föräldrarnas behov, som handlade om skillnader i hur mycket information som gavs till föräldrarna utifrån vårdarnas bedömning av föräldrarnas behov, och navigera i en vag struktur, som handlade om brister i ansvar, miljö, tajming och språk när informationen lämnades.

I delstudie II konstruerades två teman. Känna sig bekräftad som en viktig person handlade om att föräldrarna kände sig trygga, kunde hålla hoppet uppe och fick stöd från andra föräldrar. Temat var mer framträdande under behandlingens tidiga skeden. Det andra temat var känna sig som en objuden gäst vilket handlade om att kännas övergiven vid viktiga milstolpar, att tvingas tjata sig till information och att belastas av att själv behöva informera andra inom sjukvården.

I delstudie III använde vårdarna tolkningsrepertoarer som var barn-, föräldra- eller familjeorienterade, vilket avspeglade deras primära fokus i interaktionen. Föräldrarna använde tolkningsrepertoarer som talesperson, observatör eller familjemedlem. Hur dessa kombinerades inbördes påverkade interaktionen.

I delstudie IV erfor föräldrarna stor tillfredsställelse med den per­son­cen­tre­rade informationen och upplevde att de hade nytta av att på egen hand få diskutera barnets sjukdom och ställa frågor de annars inte skulle ställt. Interventionen visade ingen effekt på stress eller kroppsliga symptom på stress, ångest och nedstämdhet.

Slutsatser. För att förbättra information till föräldrar som har barn med cancer är det en central uppgift att bedöma hur mycket och vilken information som ska ges vid varje tillfälle, att uppmärksamma att föräldrarna kan ha andra informationsbehov än barnet och att möten med föräldrarna ska ske i lugn och ro samt att organisera vården så att ansvaret är tydligt. I synnerhet bör det ske förbättringar kring det som föräldrarna upplever som viktiga milstolpar under barnets sjukdomstid. Interventionen för per­son­cen­tre­rad information uppskattades av föräldrar som har barn med cancer men effekten på föräldrarnas psykosociala välbefinnande behöver utforskas ytterligare.

Abstract [en]

Background. Parents of children with cancer experience a life situation characterised by uncertainty and worries, and they face ongoing social and emotional challenges. Compared to parents of healthy children, they also experience increased levels of perceived stress and they suffer to a greater extent from post-traumatic stress symptoms. Even though information about the child’s disease is crucial for parents, they still experience low satis­faction with the information given to them.

Aim. The aim of this thesis was to, within the field of paediatric oncology care, describe health care professionals’ and parents’ experiences from infor­mation, study their joint interaction and describe experiences and effects from an intervention based on person-centred information to parents.

Methods. For study I–III, focus group interviews (I, II), individual inter­views (II, III), and participant observations (III) were used. Participants were 20 health care professionals (I), 14 parents of children with cancer (II) and 25 health care professionals and 25 parents (III). Data were analysed by qualitative content analysis (I, II) and discursive psychology (III). In study IV, an intervention for person-centred information was tested on 8 parents using a single-case experimental design. Data were collected with qualitative interviews and web questionnaires. Outcome measures were perceived stress, physical symptoms from stress, anxiety, depression, and satisfaction with information.

Results. In study I, the analysis resulted in two themes, Matching the amount of information to the parents’ needs, which dealt with differences in the amount of information provided to parents according to the health care professionals’ assess­ment of parental needs, and Navigating through a vague structure, which was about shortcomings in responsibilities, setting, timing, and language when parents were informed.

In study II, two themes were constructed. Feeling acknowledged as a person of significance was about feeling safe and secure, having one’s hopes supported and getting relief from other families. This was accentuated early in the treatment trajectory. Feeling like an unwelcome guest was about feeling abandoned at important milestones, feeling forced to nag for information and being burdened by informing others.

In study III, the health care professionals used interpretative repertoires that were child, parent, or family oriented, which mirrored the primary focus of the inter­action. Parents used repertoires as a spokesperson, an observer, or a family member. The combination of the repertoires steered the interaction.

In study IV, parents reported a high satisfaction with the person-centred information intervention and perceived benefits from having their own time to discuss the child’s disease and pose questions that they otherwise would not have an opportunity to ask. No effects from the intervention were demon­strated on perceived stress, physical symptoms of stress, anxiety, and depressive mood.

Conclusion. To improve information to parents of children with cancer, a central task is to assess the amount of and what information given to parents, pay attention to possible differences in infor­mation needs between parents and children, as well as to organise the care so that the respon­si­bilities are clear and that parents are met in a calm setting. Improvements at important milestones during the illness period should be pri­ori­tised. A person-centred information inter­ven­tion is perceived as bene­ficial by parents, however, its effect on perceived parental stress has further to be investigated.

Place, publisher, year, edition, pages
Umeå: Umeå universitet , 2013. , 78 p.
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 1569
Keyword [en]
discursive psychology, focus groups, health-care professionals, interventions, parents, paediatric oncology nursing, perceived stress, person-centred information, qualitative content analysis, qualitative interviews, single-case experimental designs
Keyword [sv]
barnonkologisk omvårdnad, diskurspsykologi, fokusgrupper, föräldrar, interventioner, kvalitativ innehållsanalys, kvalitativa intervjuer, personcentrerad information, single-case-studier, stress, vårdare
National Category
Nursing
Research subject
omvårdnadsforskning med samhällsvetenskaplig inriktning
Identifiers
URN: urn:nbn:se:umu:diva-68729ISBN: 978-91-7459-625-0 (print)ISBN: 978-91-7459-626-7 (print)OAI: oai:DiVA.org:umu-68729DiVA: diva2:619612
Public defence
2013-05-31, Aulan, Vårdvetarhuset, Umeå, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2013-05-08 Created: 2013-04-24 Last updated: 2014-06-12Bibliographically approved
List of papers
1. Professional caregivers' perceptions of providing information to parents of children with cancer
Open this publication in new window or tab >>Professional caregivers' perceptions of providing information to parents of children with cancer
2011 (English)In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 28, no 1, 34-42 p.Article in journal (Refereed) Published
Abstract [en]

Information has been described as a critical part of the care for parents of children with cancer, but not much is known about how caregivers makes decisions about informing parents. This study aims to illuminate professional caregivers' perceptions of providing information to parents of children with cancer. Twenty caregivers at a Swedish pediatric oncology ward participated in four focus group interviews. The interviews were transcribed verbatim and subjected to qualitative content analysis. Two themes were found: Matching the amount of information to the parents' needs concerned situations where the amount of information provided according to the caregivers' assessment is deemed too small, appropriate, or too large. Navigating through a vague structure dealt with a disrupted setting, unclear responsibilities within the team, difficult timing, unintelligible information, and underused tools for communication. Implications for intervention development are discussed.

Keyword
caregivers’ perceptions, content analysis, focus groups, information to parents, pediatric oncology
National Category
Nursing
Research subject
omvårdnadsforskning med samhällsvetenskaplig inriktning
Identifiers
urn:nbn:se:umu:diva-38839 (URN)10.1177/1043454210377175 (DOI)20841445 (PubMedID)
Available from: 2012-04-12 Created: 2011-01-03 Last updated: 2017-12-11Bibliographically approved
2. Parental experiences of information within pediatric oncology
Open this publication in new window or tab >>Parental experiences of information within pediatric oncology
2011 (English)In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 28, no 4, 244-251 p.Article in journal (Refereed) Published
Abstract [en]

Parents of children with cancer use information to create knowledge about their child's disease. Information can help parents reduce chaos and create a feeling of control, but there are often obstacles to its acquisition, which has been described as similar to learning a new language. The purpose of this study was to describe parents' experiences of acquiring and using information to create knowledge about their child's cancer during the course of the illness. The authors used qualitative content analysis on data from focus groups and individual interviews with 14 parents of children with cancer. Two themes were constructed: (a) feeling acknowledged as a person of significance included feeling safe and secure in spite of uncertainty, having one's hopes supported, and getting relief from other families' experiences; (b) feeling like an unwelcome guest included feeling abandoned at important milestones, feeling forced to nag for information, and feeling burdened by the obligation to inform others. Parents may need extra attention at important milestones such as treatment cessation, with information meetings grounded in the parents' own needs.

Keyword
Content analysis, focus group interviews, individual interviews, information, parental experiences, pediatric oncology
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-46355 (URN)10.1177/1043454211409587 (DOI)21653912 (PubMedID)
Available from: 2012-04-12 Created: 2011-08-31 Last updated: 2017-12-08Bibliographically approved
3. Talking via the child: discursively created interaction between parents and health care professionals in a pediatric oncology ward
Open this publication in new window or tab >>Talking via the child: discursively created interaction between parents and health care professionals in a pediatric oncology ward
2013 (English)In: Journal of Family Nursing, ISSN 1074-8407, E-ISSN 1552-549X, Vol. 19, no 1, 29-52 p.Article in journal (Refereed) Published
Abstract [en]

The aim of this study was to describe discursively constructed interactions between parents and health care professionals (HCPs) in a pediatric oncology ward. Field notes from 70 focused participant observations and 16 informal interviews with 25 HCPs interacting with 25 parents of children with cancer were analyzed using discursive psychology. Six dominant interpretative repertoires (flexible parts of discourses used in everyday interaction) were found. Repertoires used by the HCPs were child, parent, or family oriented, mirroring the primary focus of the interaction. Parents used a spokesperson repertoire to use their own expertise to talk on behalf of the child; an observer repertoire, in which they kept in the background and interfered only when needed; or a family member repertoire to position themselves on a level equal to the ill child. The results are discussed in relation to philosophies influencing pediatric nursing, such as family-centered nursing and child-centered nursing.

Keyword
discursive psychology, health care professional–parent interaction, participant observation, pediatric oncology, diskurspsykologi, vårdar-föräldrainteraktion, vårdare, föräldrar, deltagande observationer, barnonkologi, pediatrik, onkologi
National Category
Nursing
Research subject
omvårdnadsforskning med samhällsvetenskaplig inriktning
Identifiers
urn:nbn:se:umu:diva-66434 (URN)10.1177/1074840712462136 (DOI)23076622 (PubMedID)
Available from: 2013-02-25 Created: 2013-02-19 Last updated: 2017-12-06Bibliographically approved
4. A person-centred intervention for information to parents of children with cancer: experiences and effects
Open this publication in new window or tab >>A person-centred intervention for information to parents of children with cancer: experiences and effects
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Objective. The aim of this paper was to describe the experiences and effects of participating in a person-centred information intervention aimed at parents of children with cancer.

Methods. Eight parents participated in the intervention, which started two months after the child’s diagnosis and was based upon the representational approach for patient education. A mixed method approach was employed. The experiences were captured via quali­tative interviews and the effects were evaluated using a single-case design with web-based questionnaires.

Results. Parents expressed a high satisfaction with the inter­vention, as reported in the follow-up interviews and/or in the scale measuring satisfaction. However, no changes were seen in the measures for psychosocial distress.

Conclusion. The intervention was feasible and appreciated by parents but further research is needed considering the effect on parental perceived stress.

Keyword
information, interventions, mixed methods, paediatric oncology, parents, patient-centred information, single-case design
National Category
Nursing
Research subject
omvårdnadsforskning med samhällsvetenskaplig inriktning
Identifiers
urn:nbn:se:umu:diva-68728 (URN)
Available from: 2013-04-30 Created: 2013-04-24 Last updated: 2014-06-12Bibliographically approved

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