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TRÖST: beskriven av långvarigt sjuka barn, föräldrar och en sjuksköterska
Umeå University, Faculty of Medicine, Department of Nursing.
2010 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [sv]

Det övergripande syftet med avhandlingen är att beskriva långvarigt sjuka barns upplevelser av tröst samt vilka och vad som tröstar barn, föräldrar och en sjuksköterska. Avhandlingen omfattar fyra delstudier. Långvarigt sjuka barn, föräldrar och en sjuksköterska har intervjuats och barnen har ritat teckningar.I delstudie I var syftet att undersöka vad barn med långvariga sjukdomar berättar muntligt och i teckningar om sina upplevelser av att bli tröstade. Sju barn i åldern 4-10 år, med olika långvariga sjukdomar, beskrev under intervju sina upplevelser av tröst och ritade teckningar. Intervjuerna analyserades med innehållsanalys, vilket utmynnade i fyra teman: att vara fysiskt nära sin familj, att känna sig trygg och säker, att sjuksköterskor finns till hands för barnen och att barnen finns till hands för sina föräldrar och syskon. Resultatet visar att barnen litade på sjuksköterskors kunskap och yrkeskunnande, vilket var en förutsättning för att kunna känna sig trygg och hemma på sjukhus. Att vara nära sin familj upplevdes än mer betydelsefullt för att uppleva tröst.

I delstudie II var syftet att beskriva föräldrars upplevelser av vad som tröstar dem när deras barn insjuknat i cancersjukdom. Nio föräldrar till barn i åldern 3-9 år, som var inlagda på vårdavdelning och hade genomgått sin första behandling, intervjuades. Innehållsanalys utmynnade i fem teman: att uppleva tröst genom att vara nära sitt barn, att uppleva tröst genom barnets styrka, att uppleva tröst genom att känna sig hemma på vårdavdelningen, att uppleva tröst genom att vara en familj och genom att vara hemma samt att uppleva tröst genom stöd från sociala nätverk. I kommunion, en djup känsla av gemenskap med barnet och personer i sociala nätverk, upplevde föräldrarna en ny vardag som kännetecknades av att känna sig trygg i livet trots alla svårigheter och de upplevde stunder av hopp.

I delstudie III var syftet att beskriva upplevelser av vad som tröstar ett allvarligt sjukt och senare döende barn, berättat av barnet, hans mamma och hans sjuksköterska. Barnet ritade teckningar. Fältanteckningar, teckningar och intervjuer analyserades med innehållsanalys, vilket utmynnade i fyra teman: att uttrycka känslor och bli redo för tröst, att vara i kommunion, att skifta perspektiv och att finna tröst genom att vara hemma. Resultatet visar att tröst för det svårt sjuka, senare döende barnet, innebar att barnet kunde uttrycka sina känslor som barnet ville, att familjen fanns nära och var involverade i omvårdnaden av barnet, att barnet kunde vårdas hemma och att barnet upplevde en förtroendefull relation med sin sjuksköterska.

I delstudie IV var syftet att beskriva vem och vad som tröstar föräldrar, syskon, sjuksköterska och andra personer som tröstade ett svårt sjukt och senare döende barn, beskrivet av mamman och barnets sjuksköterska. Intervjuer från delstudie II analyserades med innehållsanalys och utmynnade i tio teman. Resultatet visar en bild av samverkande nätverk som kan finnas runt ett svårt sjukt barn. Den svåra situationen innebar att barnets familj bar en tung börda, men omgivna av ett tröstande nätverk som de kunde luta sig mot och dela lidande och ansvar med, kunde de finna tröst och trösta varandra.

Resultatet i avhandlingen visar att de långvarigt sjuka barnen och föräldrarna fann tröst i att kunna dela lidande med varandra. Föräldrar och sjuksköterska fann tröst i att kunna dela lidandet och ansvaret med personer i sina sociala nätverk. Modellen om tröst (Norberg m fl, 2001) kunde användas för att ge struktur till diskussionen.

Abstract [en]

The overall aim of the thesis was to describe experiences of comfort for children with chronic illnesses, and who and what comforted children, parents and one nurse. The thesis comprises four studies and is based on interviews with sick children, parents and one nurse. The children also made drawings.

In study I the aim was to examine how children with chronic illnesses narrate their experiences of being comforted in the hospital. Seven children 4-10 years old described in interviews their experiences of comfort and made drawings. Thematic content analysis revealed four themes: being physically close to one’s family, feeling safe and secure, staff being there for the children, and children being there for parents and siblings. The findings suggest that trusting the staff’s knowledge and professional skills is a prerequisite for children to feel "at home", and safe in hospital. Being close to one’s family was essential for feeling comforted.

In study II the aim was to describe what parents narrate as comforting them when their child was suffering from cancer. Interviews were performed with nine parents, eight mothers and one father, of children aged 3-9 years, who were admitted to a pediatric oncology ward and had undergone their first treatment. Content analysis revealed five themes: experiencing comfort from being close to the child, deriving comfort from the child’s strength, from feeling at home on the ward, from being a family and being at home, and deriving comfort from support of social networks. In communion with the child and others, the parents built a new normality perceived as being at home in life, despite all their difficulties. Within the frame of communion the parents experienced moments of hope.

In study III the aim was to describe what comforted a seriously ill and finally dying child, as revealed by the child, his mother and his nurse. Field notes, drawings and interviews were analyzed using content analysis that revealed four themes: expressing feelings and becoming ready for comfort, being in communion, shifting perspective and finding comfort in feeling at home. Based on the findings, comfort for an ill and finally dying child was interpreted as being about having opportunities to express feelings in the way the child chooses, the family being close and involved in care, and achieving feelings of being at home and having a trustful relationship with a special nurse.

In study IV the aim was to describe who and what comforted the comforters of a seriously ill and ultimately dying child as described by the child’s mother and nurse. Interviews with a mother and a nurse from study III were analyzed by content analysis and a sociogram was outlined. The findings provided a picture of interacting social networks that can exist around a seriously ill child. The difficult situation meant that the child’s family carried a heavy burden. However, surrounded by a comforting network with which they could share both suffering and responsibility, they were able to find comfort and comfort each other.

The findings from this thesis show that chronically ill children and parents found comfort from sharing suffering with one another. The parents and the nurse found comfort in sharing suffering and responsibility with persons in their social networks. The model of consolation (Norberg et al, 2001) could be used to give structure to the discussion.

Place, publisher, year, edition, pages
Umeå: Umeå universitet , 2010. , 96 p.
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 1387
Keyword [en]
cancer, child, chronic disease, comfort, drawing, family, nurse, parent, pediatric nursing, sibling, social network
Keyword [sv]
barn, barnsjukvård, cancer, familj, föräldrar, långvarig sjukdom, socialt nätverk, sjuksköterska, syskon, teckningar, tröst
National Category
Nursing
Research subject
Caring Sciences
Identifiers
URN: urn:nbn:se:umu:diva-37735ISBN: 978-91-7459-089-0 (print)OAI: oai:DiVA.org:umu-37735DiVA: diva2:369769
Public defence
2010-12-07, Aulan, Vårdvetarhuset, Umeå universitet, Umeå, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2010-11-18 Created: 2010-11-11 Last updated: 2016-02-01Bibliographically approved
List of papers
1. Narratives of children with chronic illness about being comforted
Open this publication in new window or tab >>Narratives of children with chronic illness about being comforted
2008 (English)In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 23, no 4, 310-316 p.Article in journal (Refereed) Published
Abstract [en]

The aim of the study was to examine how children with chronic illnesses narrate their experience of being comforted in hospital. During interviews, seven children, 4-10 years old described their experiences and made drawings. Thematic content analysis revealed following themes: being physically close to one's family , feeling safe and secure, staff being there for the children, and children being there for the parents and siblings. Mother was identified as the most important comforter. The findings suggest that trusting in the staff's knowledge and professional skills is a prerequisite for the children to feel "at home", and safe in hospital. Being close to one's family is even more important.

Place, publisher, year, edition, pages
W.B. Saunders, 2008
Keyword
Children, Chronic illness, Comfort, Drawing, Hospital, Narrative
National Category
Nursing
Research subject
Caring Sciences
Identifiers
urn:nbn:se:umu:diva-37665 (URN)10.1016/j.pedn.2007.04.006 (DOI)
Available from: 2010-11-11 Created: 2010-11-11 Last updated: 2016-02-01Bibliographically approved
2. Parents' experiences of what comforts them when their child is suffering from cancer
Open this publication in new window or tab >>Parents' experiences of what comforts them when their child is suffering from cancer
Show others...
2010 (English)In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 27, no 5, 266-275 p.Article in journal (Refereed) Published
Abstract [en]

The aim of the study was to describe parents' narratives concerning what they find comforting when they have a child suffering from cancer. Interviews were conducted with 9 parents--8 mothers and 1 father--of children aged 3 to 9 years who were admitted to a pediatric oncology ward and had undergone their first treatment. The findings showed that the parents derived comfort from being close to their child, perceiving the child's strength, feeling at home in the ward, being a family and being at home, and receiving support from their social network. Comfort experienced in communion with the child and others became important and helped the parents build a new normality perceived as being at home in life despite all their difficulties. Within the frame of communion, the parents seemed to experience moments of hope for their child's recovery and survival.

Keyword
comfort, communion, feeling at home, hope, parent
National Category
Nursing
Research subject
Caring Sciences
Identifiers
urn:nbn:se:umu:diva-37431 (URN)10.1177/1043454210364623 (DOI)000281243900003 ()20639348 (PubMedID)
Available from: 2010-11-03 Created: 2010-11-03 Last updated: 2016-02-01Bibliographically approved
3. Victor's story: a seriously ill child's experiences of discomfort and comfort from being diagnosed with cancer to dying
Open this publication in new window or tab >>Victor's story: a seriously ill child's experiences of discomfort and comfort from being diagnosed with cancer to dying
(English)Manuscript (preprint) (Other academic)
Abstract [en]

In this case study, the aim was to describe what comforted a seriously ill and finally dying child, here called Victor, as revealed by the child, his mother and his nurse. Content analysis was performed of analyses of conversations, field notes, drawings, interviews and comments on drawings. In the data comfort was often expressed as releasing extreme discomfort Victor experienced and accordingly four themes describing both discomfort and comfort were formulated in the analysis: Expressing feelings and becoming ready for comfort, Being in communion, Shifting perspective and Finding comfort in feeling at home. By expressing feelings through body language, crying and drawings Victor became ready for comfort and found it through feeling close to loved ones while sharing with them whatever was happening; through experiencing a trustful relationship with his nurse, transforming pressure into play, making plans for the future and maintaining his interests in nature; and through being at home, surrounded by his family’s love and concern. Based on these findings comfort for an ill and finally dying child is interpreted as being about providing the child with opportunities to express feelings in the way the child chooses, enabling the family to be close and involved in care, and supporting feelings of being at home and having a trustful relationship with a special nurse.

Keyword
case study, comfort, communion, dying child, mother, nurse
National Category
Nursing
Research subject
Caring Sciences
Identifiers
urn:nbn:se:umu:diva-37727 (URN)
Available from: 2010-11-11 Created: 2010-11-11 Last updated: 2016-02-01Bibliographically approved
4. Comforting the comforters: descriptions of comfort in the social networks surrrounding a seriously ill and ultimately dying child
Open this publication in new window or tab >>Comforting the comforters: descriptions of comfort in the social networks surrrounding a seriously ill and ultimately dying child
(English)Manuscript (preprint) (Other academic)
Abstract [en]

The death of a child is considered to be one of the greatest losses a parent can sustain and an extremely stressful experience for nurses. Those who provide comfort, i.e. the comforters, may also need comfort in this difficult situation yet little is known about who and what comforts comforters. The aim of this study was to describe who and what comforted the comforters of a seriously ill and ultimately dying child, as narrated by the child’s mother and nurse. The interviews with mother and nurse were analysed using content analysis. Persons and activities who comforted were outlined in a sociogram (Figure 1). The findings showed that the mother received comfort from her child and family, the nurse, the extended family and others close to the family. She found comfort in being involved in the care and sharing worries with the nurse and other hospital staff and in self-comfort. Siblings found comfort in each other, in living everyday life and in music and making drawings. The nurse gained comfort from sharing hardships with colleagues and a relative and from making a difference to the child. The findings provide a picture of interacting comforting networks that can surround a seriously ill child.

Keyword
child, comfort, drawing, family, palliative care, social network, sociogram
National Category
Nursing
Research subject
Caring Sciences
Identifiers
urn:nbn:se:umu:diva-37731 (URN)
Available from: 2010-11-11 Created: 2010-11-11 Last updated: 2016-02-01Bibliographically approved

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