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Barns erfarenheter av ”the Family Talk Intervention”: Att leva med en svårt sjuk förälder som vårdas inom specialiserad palliativ hemsjukvård
Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.ORCID iD: 0000-0002-9396-9800
2020 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [sv]

När en förälder i en barnfamilj får en livshotande sjukdom förändras livet för allai familjen. Barn som lever i denna situation rapporterar att de upplever oro och skuld relaterat till förälderns sjukdom. Dessutom har barnen en ökad risk för psykisk ohälsa. Brist på kommunikation inom familjen om sjukdomen och ämnen relaterade till den, har visat sig ha en negativ påverkan på hälsan. Trots detta finns endast ett fåtal stödinterventioner utvärderade för barnfamiljer i palliativ vård, och ännu färre utvärderade utifrån barns erfarenheter. The Family Talk Intervention (FTI) är en familjecentrerad intervention, med barnen i fokus, som visat på positiva effekter gällande sjukdomsrelaterad information och ökad kommunikation för barnfamiljer inom psykiatrisk och somatisk vård. Det övergripande syftet med denna avhandling var att utforska barns erfarenheter av FTI och att leva med en svårt sjuk förälder som vårdas inom specialiserad palliativ hemsjukvård. Avhandlingen påvisar att de flesta barnen ville veta mer om sin förälders sjukdom. De yngre barnen rapporterade svårigheter både med att berätta om, och med att visa hur de själva mådde för någon i sin familj. De barn som deltog i FTI uppskattade strukturen och innehållet, de kände sig sedda, hörda och uppmärksammade under FTI, vilket skapade en känsla av tillit och trygghet.Alla barn blev lyssnade till och fick stöd att uttrycka både svårigheter och faktorer som kunde underlätta för dem. Under interventionen var det dock endast för ett fåtal barn som deras synpunkter och åsikter togs i beaktan, i enlighet med artikel 12 i barnkonventionen. De flesta barn rapporterade dock att FTI ökade kunskaperna om förälderns sjukdom och att det blev lättare att kommunicera med sina föräldrar. Genom sitt deltagande i FTI kunde barnen förbereda sig inför framtida sjukdomsrelaterade händelser, och hantering av konflikter underlättades.Resultatet visar att de behov barnen hade innan deltagande i FTI till stor del tillgodosågs under deltagandet. FTI innehar dock en struktur som ger föräldrarnas perspektiv större utrymme än barnens. Barnens perspektiv behöver således tas i beaktan i större utsträckning i syfte att det stöd som ges till dessa barn verkligen är till för dem. FTI tycks trots detta vara genomförbart och betydelsefullt för de barn som deltagit.

Place, publisher, year, edition, pages
Stockholm: Ersta Sköndal Bräcke högskola , 2020. , p. 140
Series
Avhandlingsserie inom området Människan i välfärdssamhället, ISSN 2003-3699 ; 5
Keywords [sv]
Barn, Barnkonventionen, Delaktighet, Familj, Information, Kommunikation, Närstående, Palliativ vård, Pilotstudie, The Family Talk Intervention
National Category
Nursing
Research subject
The Individual in the Welfare Society, Palliative Care
Identifiers
URN: urn:nbn:se:esh:diva-8131Libris ID: 0blbw6dtx8dcvlqjISBN: 978-91-9858-082-2 (print)OAI: oai:DiVA.org:esh-8131DiVA, id: diva2:1430501
Public defence
2020-06-10, Aulan, Campus Ersta, Stockholm, 09:30
Opponent
Supervisors
Available from: 2020-05-19 Created: 2020-05-15 Last updated: 2020-05-25
List of papers
1. The family talk intervention in palliative care: a study protocol
Open this publication in new window or tab >>The family talk intervention in palliative care: a study protocol
2018 (English)In: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 17, no 35Article in journal (Refereed) Published
Abstract [en]

Background: In palliative care contexts, support programs for families with a severely ill parent and minor children are few, and even fewer have been evaluated scientifically. The aims of this study are to examine feasibility and potential effects of a modified version of the Family Talk Intervention (FTI) in palliative care.

Methods: This ongoing family-centered intervention has a quasi-experimental design comparing one intervention and one comparison group. The intervention includes severely ill parents who have minor children (aged 6–19 yrs) and are receiving advanced homecare in Stockholm, Sweden between March 2017 and March 2018. The main goal of the FTI is to support family communication through psycho-education and narrative theory. The modified FTI consists of six meetings with family members, and is held by two interventionists. Each family sets up needs-based goals for the intervention. For evaluation purposes, data are collected by questionnaire before the intervention, within two months after baseline, and one year after baseline. Interviews will be conducted within two months after FTI is completed. Notes taken by one of the interventionists during the family meetings will also be used. Questionnaire data analysis will focus on patterns over time using descriptive statistics. For interview data and notes, content analysis will be used.

Discussion: This study will add knowledge about palliative care for parents who have minor children. It will contribute by testing use of FTI in palliative care, and point out directions for future evaluations of FTI in palliative care settings.

Keywords
Palliative care, Family, Minor children, Complex intervention, Study protocol, Family talk intervention
National Category
Nursing
Research subject
The Individual in the Welfare Society, Palliative Care
Identifiers
urn:nbn:se:esh:diva-6672 (URN)10.1186/s12904-018-0290-8 (DOI)
Available from: 2018-02-26 Created: 2018-02-26 Last updated: 2020-05-15Bibliographically approved
2. Children’s Self-Reports About Illness-Related Information and Family Communication When a Parent Has a Life-Threatening Illness
Open this publication in new window or tab >>Children’s Self-Reports About Illness-Related Information and Family Communication When a Parent Has a Life-Threatening Illness
2020 (English)In: Journal of Family Nursing, ISSN 1074-8407, E-ISSN 1552-549XArticle in journal (Refereed) Epub ahead of print
Abstract [en]

Children's experiences of information and family communication when a parent has a life-threatening illness have been sparsely studied, though such information is important for the child's wellbeing. The aim of this study was to explore children's reports of illness-related information and family communication when living with a parent with a life-threatening illness. Forty-eight children, aged 7 to 19 years, were recruited from four specialized palliative home care units in Stockholm, Sweden. All but one child reported that someone had told them about the parent's life-threatening illness; however, two thirds wanted more information. A quarter of the teenagers reported that they had questions about the illness that they did not dare to ask. Half of the children, aged 8 to 12, reported that they felt partially or completely unable to talk about how they felt or show their feelings to someone in the family. Interventions are needed that promote greater family communication and family-professional communication.

Keywords
children’s information needs; children’s self-report; family communication; palliative care
National Category
Nursing
Research subject
The Individual in the Welfare Society, Palliative Care
Identifiers
urn:nbn:se:esh:diva-7978 (URN)10.1177/1074840719898192 (DOI)31931660 (PubMedID)
Available from: 2020-02-06 Created: 2020-02-06 Last updated: 2020-05-15Bibliographically approved
3. Children’s Experiences of the Family Talk Intervention When a Parent is Cared for in Palliative Home Care: A Feasibility Study
Open this publication in new window or tab >>Children’s Experiences of the Family Talk Intervention When a Parent is Cared for in Palliative Home Care: A Feasibility Study
Show others...
(English)In: Article in journal (Refereed) Submitted
Abstract [en]

The aim with this study was to explore minor children’s experiences of the Family TalkIntervention (FTI) when a parent is cared for in palliative home care, with a focus onfeasibility. The main goal of FTI is to increase family communication about the illness. This paper is based on 25 children’s reports, derived from a pilot study with a mixed method design, involving both questionnaires and interviews, performed after the children’sparticipation. A majority of the children appreciated the structure and content of FTI. They felt seen, heard and acknowledged by the interventionists and recommended FTI to other children in similar situations.

Keywords
Children, Family, the Family Talk Intervention, Feasibility, Mixed method, Palliative Care
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-8127 (URN)
Available from: 2020-05-15 Created: 2020-05-15 Last updated: 2020-05-19Bibliographically approved
4. Children’s views were not taken into account in the Family Talk Intervention: a qualitative study of families with a parent in palliative care
Open this publication in new window or tab >>Children’s views were not taken into account in the Family Talk Intervention: a qualitative study of families with a parent in palliative care
(English)In: Article in journal (Refereed) Submitted
Abstract [en]

Having a parent with a life-threatening illness is challenging throughout the illness trajectory, and for some also in bereavement. Article 12 of the United Nations Convention on the Rights of the Child states a child’s right to express their opinion and have it respected in processes that affect them. The aim of this paper were to examine the child’s active participation in a family support programme, the Family Talk Intervention, in accordance with Article 12, when having a parent cared for in palliative care. Twenty families with 50 children participated. Field notes were taken during the programme and later analysed with interpretive descriptions.The study shows that all children were listened to, but only a quarter reached the minimum point required in Article 12, where their views were taken into account. The Family Talk Intervention in palliative care would benefit from implementing a child-centred approach in order for all children to be active participants.

Keywords
Minor children, Family-centred intervention, Palliative care, The Family Talk Intervention, The United Nations Convention on the Rights of the Child
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-8130 (URN)
Available from: 2020-05-15 Created: 2020-05-15 Last updated: 2020-05-19Bibliographically approved
5. The family talk intervention for families when a parent is cared for in palliative care: potential effects from minor children’s perspectives
Open this publication in new window or tab >>The family talk intervention for families when a parent is cared for in palliative care: potential effects from minor children’s perspectives
Show others...
2020 (English)In: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 19, p. 1-10, article id 50 (2020)Article in journal (Refereed) Published
Abstract [en]

Background: Children show long-term psychological distress if family communication and illness-related information are poor during and after a parent’s illness and death. Few psychosocial interventions for families with minor children living with a parent who has a life-threatening illness have been evaluated rigorously. Even fewer interventions have been family-centered. One exception is the Family Talk Intervention (FTI), which has shown promising results regarding increased illness-related knowledge and improved family communication. However, FTI has not yet been evaluated in palliative care. This study therefore aimed to explore the potential effects of FTI from the perspectives of minor children whose parent is cared for in specialized palliative home care.

Methods: This pilot intervention study involves questionnaire and interview data collected from children after participation in FTI. Families were recruited from two specialized palliative home care units. To be included, families must include one parent with life-threatening illness, at least one child aged 6–19 years, and understand and speak Swedish. Twenty families with a total of 34 children participated in FTI; 23 children answered the questionnaire, and 22 were interviewed after participation.

Results: The children reported that FTI increased their knowledge about their parents’ illness. They said the interventionist helped them to handle school-related problems, establish professional counselling, and find strength to maintain everyday life. Children aged 8–12 reported that talking with their parents became easier after FTI, whereas communication was unchanged for teenagers and between siblings. Children also reported having been helped to prepare for the future, and that they benefitted from advice about how to maintain everyday life and minimize conflicts within the family.

Conclusions: Children who participated in FTI reported that it was helpful in many ways, providing illness-related information and improving family communication when a parent has a life-threatening illness. Other potential positive effects reported by the children were that FTI facilitated their preparation for the future, decreased family conflicts, and started to build up resilience.

Keywords
Children as relatives, Children's self-reports, Minor children, The family talk intervention, Palliative care
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-8058 (URN)10.1186/s12904-020-00551-y (DOI)32299420 (PubMedID)
Available from: 2020-04-17 Created: 2020-04-17 Last updated: 2020-05-15Bibliographically approved

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