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Children with cancer: focusing on their fear and on how their fear is handled
Örebro University, Department of Clinical Medicine.ORCID iD: 0000-0001-7352-8234
2007 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Various fears in children with cancer have previously been identified as a result of studying e.g. symptom experiences, distress and uncertainty within this population. Studies of the meaning the children give to their fear, as well as the handling of their fear seem to be sparse, however. Also, fear has not been an exclusive focus in previous studies. Professionals in clinical practice have pointed to the need for such research, which has prompted the present research work. The overall aim of this thesis was therefore twofold; firstly, the aim was to elucidate fear in children and adolescents with cancer in order to gain an understanding from the perspective of adolescents and parents. Secondly, it was to elucidate parents’ and professionals’ handling of the fear. This in order to gain a deeper understanding of what performances and manners the children and adolescents can face when being fearful. A qualitative descriptive design was adopted in the five included studies. The methods used in the data analysis were phenomenological hermeneutical method (studies I–III) and qualitative content analysis (studies IV–V).

In study I six adolescent girls, aged 14–16 years, with experiences of various cancer diagnoses, but now declared fit, were interviewed. The results reveal that they experience their fear as embodied, which in the comprehensive understanding of the results was interpreted as a threat to their personal self, their whole existence. Their fear was seen as a holistic intertwined experience, including fear related to the physical body and to the social self. Also, existential fear was described. Their described experience was interpreted as suffering.

Studies II and III share the same data. Fifteen parents of children at various ages with various cancer diagnoses were interviewed in focus groups about their experience of their child’s fear. In study II the result reveals how the parents experienced and understood their child’s fear. The fear was described as a multidimensional phenomenon, which was not always easy to identify. It was contrasted to feelings of unease and to absence of fear. In the comprehensive understanding the fear was interpreted as a suffering, as that was regarded to be what was the common meaning in the narratives. The suffering was interpreted as an ethical demand to the parents to take action. In study III the parents described their actions, i.e. they described how they dealt with the fear. Their actions were described as acting in the best interests of the child, which included striving to make the child feel secure and experience wellbeing, up to a certain point. However, after this point the parents used their parental authority to maintain the child’s physical health rather than trying to prevent or relieve the child’s fear. In the comprehensive understanding the parents’ handling of their child’s fear was interpreted as revealing mercy and as being synonymous with meeting the ethical demand put on them.

In study IV ten experienced nurses and physicians were individually interviewed about how they handled fear in children with cancer. The result reveals that the existential issues were dealt with within the relationship with the child, on a sliding scale between closeness and distance, and that the fear related to medical procedures occurred on a continuum between support and lack of support. The various actions involved, and the manner in which these actions were performed, was described.

In the observational study (study V) eleven parents and their children as well as eleven health professionals participated. They were observed at children’s routine visits at the outpatient clinic. The aim was to study the interactions related to fear. The result reveals that when children were fearful they expressed this both verbally and non-verbally. The parents’ and professionals’ actions and interactions in these situations were found to be characterized by recognition of the fear or lack of attention to the fear.

The findings can contribute to a broadened knowledge on fear in children and adolescents with cancer. Awareness and understanding of the meaning adolescents give to their fear, and furthermore, of the parents’ experience and understanding of their child’s fear can provide tools for interacting with these groups. The findings on how fear is dealt with by the ones children have claimed as important sources for support, can give insights into what the child may face when being fearful. These insights can form the basis for individual, as well as collegial, reflections on what is done when children face fear, how fear is handled on an everyday basis and why it is handled in this way. Such reflections could lead to an ethical awareness of handling fear in children with cancer.

Place, publisher, year, edition, pages
Örebro: Örebro universitetsbibliotek , 2007. , 92 p.
Series
Örebro Studies in Medicine, ISSN 1652-4063 ; 10
Keyword [en]
Children, cancer, fear, handling
National Category
Clinical Science
Research subject
Medicine
Identifiers
URN: urn:nbn:se:oru:diva-1196ISBN: 978-91-7668-537-2 (print)OAI: oai:DiVA.org:oru-1196DiVA: diva2:134766
Public defence
2007-05-30, Wilandersalen, M-huset, Universitetssjukhuset, Örebro, 09:00 (English)
Opponent
Supervisors
Available from: 2007-05-04 Created: 2007-05-02 Last updated: 2017-10-18Bibliographically approved
List of papers
1. Embodied suffering: experiences of fear in adolescent girls with cancer
Open this publication in new window or tab >>Embodied suffering: experiences of fear in adolescent girls with cancer
2008 (English)In: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 12, no 2, 129-143 p.Article in journal (Refereed) Published
Abstract [en]

Previously, fear in adolescents with cancer has been sparsely described from an emic perspective. The aim of this study was to illuminate fear in adolescents with personal experience of cancer. The participants were six adolescent girls between the age of 14 and 16 years who were no longer under active treatment for cancer but still went for regular check-ups. Open interviews were conducted. Data were analysed according to the phenomenological hermeneutic method. In the result one main theme was identified: `an embodied fear — a threat to the personal self'. This theme was built up by three separate but intertwined themes: `experiencing fear related to the physical body', `experiencing existential fear' and `experiencing fear related to the social self'. In the comprehensive understanding the fear was interpreted from youth cultural aspects as well as a holistic perspective. The importance of professionals taking the whole person and their situation into account when meeting the fear is underlined.

Place, publisher, year, edition, pages
London: Sage, 2008
National Category
Medical and Health Sciences Surgery Cancer and Oncology
Research subject
Oncology
Identifiers
urn:nbn:se:oru:diva-5377 (URN)10.1177/1367493508088550 (DOI)
Available from: 2009-02-06 Created: 2009-02-06 Last updated: 2017-10-18Bibliographically approved
2. Children's fear as experienced by the parents of children with cancer
Open this publication in new window or tab >>Children's fear as experienced by the parents of children with cancer
2007 (English)In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 22, no 3, 233-244 p.Article in journal (Refereed) Published
Abstract [en]

It is known that children with cancer experience and express fear, but little is found in the literature about how the parents experience their child's fear. This study aimed to highlight the parents' lived experience and understanding of their child's fear. Focus group interviews with 15 parents were performed. Data were analyzed through a phenomenological hermeneutic method. Fear in children with cancer is described by the parents as a multidimensional phenomenon, which is somehow difficult to identify. It appears in contrast to the absence of fear. The comprehensive understanding of the results reveals that the parents experience their children's fear as both a suffering and an ethical demand for the parents to answer.

Place, publisher, year, edition, pages
Amsterdam: Elsevier, 2007
Keyword
Cancer, barn, rädsla, upplevelse
National Category
Pediatrics Other Social Sciences not elsewhere specified Nursing Medical and Health Sciences Social Sciences Interdisciplinary
Research subject
Nursing Science
Identifiers
urn:nbn:se:oru:diva-3979 (URN)10.1016/j.pedn2007.03.003 (DOI)
Available from: 2007-08-31 Created: 2007-08-31 Last updated: 2017-10-18Bibliographically approved
3. Parental handling of fear in children with cancer: caring in the best interests of the child
Open this publication in new window or tab >>Parental handling of fear in children with cancer: caring in the best interests of the child
(English)Manuscript (Other academic)
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:oru:diva-2837 (URN)
Available from: 2007-05-04 Created: 2007-05-04 Last updated: 2017-10-18Bibliographically approved
4. How physicians and nurses handle fear in children with cancer
Open this publication in new window or tab >>How physicians and nurses handle fear in children with cancer
2007 (English)In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 22, no 1, 71-80 p.Article in journal (Refereed) Published
Abstract [en]

Previous research on fear in children with cancer has often focused on interventions to alleviate fear related to medical procedures and less on how to meet the challenges related to existential fear. This study aimed to describe how experienced nurses and physicians handle fear in children with cancer. Ten nurses and physicians with more than 10 years of experience in child oncology from a university hospital in Sweden were interviewed, and a qualitative content analysis was performed on the data. Nurses' and physicians' handling of fear encompasses commitment and closeness and yet also a distancing from fear and its expressions

National Category
Social Sciences Interdisciplinary Nursing Other Social Sciences not elsewhere specified Medical and Health Sciences Pediatrics
Research subject
Nursing Science
Identifiers
urn:nbn:se:oru:diva-2838 (URN)10.1016/j.pedn.2006.05.010 (DOI)
Available from: 2007-05-04 Created: 2007-05-04 Last updated: 2017-10-18Bibliographically approved
5. Fear in children with cancer: observations at an outpatient visit
Open this publication in new window or tab >>Fear in children with cancer: observations at an outpatient visit
Show others...
2008 (English)In: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 12, no 3, 191-208 p.Article in journal (Refereed) Published
Abstract [en]

The aim of the study was to describe interactions within the family and between them and professionals on a routine visit at a paediatric oncology outpatient clinic where the visiting child was likely to be fearful. Observations were performed. Data were analysed by qualitative content analysis. The behaviours most frequently observed as expressing fear were being quiet, withdrawn or providing detailed descriptions of experiences. Within the theme `Recognition of the fear', an attentive attitude to the fear was traced; fear was confirmed and cooperation was seen. Although many efforts were made to meet the fear, this was not always successful. Within the theme `Lack of attention to the fear', the fear was not in focus due to parental worries and concerns about the child's health, and organizational disturbances. The results can serve as a basis for collegial reflections of how to handle fear in children with cancer.

Place, publisher, year, edition, pages
London: Sage, 2008
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:oru:diva-5375 (URN)10.1177/1367493508092519 (DOI)
Available from: 2009-02-06 Created: 2009-02-06 Last updated: 2017-10-18Bibliographically approved

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