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Weber Falk, M., Eklund, R., Kreicbergs, U., Alvariza, A. & Lövgren, M. (2022). Breaking the silence about illness and death: Potential effects of a pilot study of the family talk intervention when a parent with dependent children receives specialized palliative home care. Palliative & Supportive Care, 512-518
Open this publication in new window or tab >>Breaking the silence about illness and death: Potential effects of a pilot study of the family talk intervention when a parent with dependent children receives specialized palliative home care
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2022 (English)In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, p. 512-518Article in journal (Refereed) Published
Abstract [en]

Objective: The entire family is affected when a parent is severely ill. Parents often need and appreciate professional support when talking to children about illness and death. The family talk intervention (FTI) is family-centered and intends to promote communication about the illness and its consequences, support parenting to enhance family coping and help family members share experiences with each other to create a shared family history. This study aimed to explore potential effects of FTI in specialized palliative home care, as reported by parents.

Method: This pre-post test intervention pilot was conducted in specialized palliative home care. A convergent mixed-method design was used to analyze interview and questionnaire data. Twenty families with dependent children were recruited from two specialized palliative home care units in Stockholm, Sweden.

Results: Parents reported that family communication improved after participation in FTI as family members learned communication strategies that facilitated open sharing of thoughts and feelings. Increased open communication helped family members gain a better understanding of each other's perspectives. Parents reported that relationships with their partner and children had improved as they now shared several strategies for maintaining family relationships. Parents were also less worried following participation in FTI. The ill parents stated that they gained a sense of security and were less worried about the future.

Significance of results: This study adds to the evidence that FTI may be a useful intervention for families with dependent children and an ill parent in a palliative care setting. This trial is registered at ClinicalTrials.gov Identifier NCT03119545.

Keywords
Child, Family, Palliative supportive care, Pilot study
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-9253 (URN)10.1017/s1478951521001322 (DOI)000778889800001 ()35876452 (PubMedID)
Funder
Familjen Erling-Perssons Stiftelse, 545 02
Available from: 2021-11-17 Created: 2021-11-17 Last updated: 2023-04-11Bibliographically approved
Eklund, R., Jalmsell, L., Kreicbergs, U., Alvariza, A. & Lövgren, M. (2022). Children’s experiences of the family talk intervention when a parent is cared for in palliative home care: A feasibility study. Death Studies, 46(7), 1655-1666
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
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2022 (English)In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 46, no 7, p. 1655-1666Article in journal (Refereed) Published
Abstract [en]

The aim with this study was to explore minor children’s experiences of the Family Talk Intervention (FTI) when a parent is cared for in palliative home care, with a focus on feasibility. 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’s participation. 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)10.1080/07481187.2020.1829747 (DOI)000577655100001 ()33054633 (PubMedID)
Funder
Familjen Erling-Perssons Stiftelse, 54502
Note

Publication status in dissertation: Submitted

Available from: 2020-05-15 Created: 2020-05-15 Last updated: 2023-04-11Bibliographically approved
Eklund, R., Kreicbergs, U., Alvariza, A. & Lövgren, M. (2022). Children's views are not taken into account in accordance with article 12 of the united nations convention on the rights of the child in the family talk intervention when a parent is cared for in palliative care. Omega, 85(1), 126-154
Open this publication in new window or tab >>Children's views are not taken into account in accordance with article 12 of the united nations convention on the rights of the child in the family talk intervention when a parent is cared for in palliative care
2022 (English)In: Omega, ISSN 0030-2228, E-ISSN 1541-3764, Vol. 85, no 1, p. 126-154Article in journal (Refereed) Published
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. Fieldnotes 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)10.1177/0030222820941283 (DOI)000548547900001 ()32659170 (PubMedID)
Funder
Familjen Erling-Perssons Stiftelse, 54502Swedish Childhood Cancer Foundation, TJ2016-005
Note

Publication status in dissertation: Submitted

Title in dissertation: Children’s views were not taken into account in the Family Talk Intervention: a qualitative study of families with a parent in palliative care

Forskningsfinansiär: Gålöstiftelsen

Available from: 2020-05-15 Created: 2020-05-15 Last updated: 2023-04-11Bibliographically approved
Eklund, R., Lövgren, M., Alvariza, A., Kreicbergs, U. & Udo, C. (2022). Talking about death when a parent with dependent children dies of cancer: A pilot study of the Family Talk Intervention in palliative care. Death Studies, 46(10), 2384-2394
Open this publication in new window or tab >>Talking about death when a parent with dependent children dies of cancer: A pilot study of the Family Talk Intervention in palliative care
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2022 (English)In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 46, no 10, p. 2384-2394Article in journal (Refereed) Published
Abstract [en]

This study focused on families with dependent children who participated in the Family Talk Intervention (FTI) and lost a parent during the intervention or directly thereafter. The aim was to explore how they perceived information and communication about the imminent death during the illness trajectory and after the loss. Seven families from palliative homecare settings in Sweden participated. This study suggests that it is important to support family communication when a parent is dying, since communication in this situation is unlike everyday family communication, as they enter a complex and existentially unfamiliar area, hard to initiate on their own.

Keywords
Teenagers experiences, Dying parent, Adolescents, Nationwide, Life, Communication, Professionals, Bereavement, Diagnosis, Support
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-9033 (URN)10.1080/07481187.2021.1947415 (DOI)000669146200001 ()34214023 (PubMedID)
Funder
Familjen Erling-Perssons Stiftelse
Available from: 2021-07-05 Created: 2021-07-05 Last updated: 2023-04-11Bibliographically approved
Eklund, R. & Lövgren, M. (2022). The Family Talk Intervention in Pediatric Oncology: Ill Children’s Descriptions of Feasibility and Potential Effects. Journal of Pediatric Hematology/Oncology Nursing, 39(3), 143-154
Open this publication in new window or tab >>The Family Talk Intervention in Pediatric Oncology: Ill Children’s Descriptions of Feasibility and Potential Effects
2022 (English)In: Journal of Pediatric Hematology/Oncology Nursing, ISSN 2752-7530, E-ISSN 2752-7549, Vol. 39, no 3, p. 143-154Article in journal (Refereed) Published
Abstract [en]

Background: There are few scientifically evaluated psychosocial interventions in pediatric oncology, despite the needs for families. The family-based psychosocial intervention "The Family Talk Intervention" (FTI) has shown promising results in other care contexts and was therefore pilot-tested in pediatric oncology. In this study, we examined the experiences of participating in FTI from ill children's perspectives regarding feasibility and potential effects.

Methods: This pilot study involved 26 families in pediatric oncology that had participated in FTI. The paper is focused on those ill children who answered surveys (n = 19) and/or participated in interviews (n = 11) when FTI had ended. Data were analyzed with descriptive statistics and thematic analysis.

Results: For most ill children, FTI came at the right time, included a reasonable number of meetings, and the length of the meetings was appropriate. The children felt listened to and understood by the interventionists and almost all children reported that FTI had helped them in some way. The children's perceptions indicated that FTI improved communication within the family and strengthened family relations. Children reported that the parents and their siblings seemed to feel better after participation and became more understanding.

Discussion: The findings of this pilot study indicated that a full-scale study could be valuable from the ill children's perspective, as FTI was reported as feasible and had positive effects. The findings showed that FTI gave families an opportunity to open up communication about the illness, adjust their behaviors, and strengthen family relationships.

Trial registration: ClinicalTrials.gov Identifier NCT03650530.

Keywords
Children's experiences, Communication, Family, Pediatric cancer, The family talk intervention
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-9421 (URN)10.1177/27527530221068423 (DOI)000787636000002 ()35467434 (PubMedID)
Funder
Swedish Childhood Cancer FoundationMagnus Bergvall Foundation
Available from: 2022-02-15 Created: 2022-02-15 Last updated: 2023-08-17Bibliographically approved
Eklund, R., Eisma, M., Boelen, P., Arnberg, F. & Sveen, J. (2021). A Mobile App for Prolonged Grief among Bereaved Parents: Study Protocol for a Randomized Controlled Trial.
Open this publication in new window or tab >>A Mobile App for Prolonged Grief among Bereaved Parents: Study Protocol for a Randomized Controlled Trial
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2021 (English)Manuscript (preprint) (Other academic)
Abstract [en]

Introduction: Bereaved parents have elevated risk to develop mental health problems, yet, few studies have evaluated the effect of psychosocial interventions developed for bereaved parents. Cognitive behavioral therapy (CBT), both face-to-face or digitally delivered, has shown to be an effective intervention for prolonged grief symptoms. Self-help mobile apps offer various advantages and studies show improved mental health after app interventions. No app has yet been evaluated targeting prolonged grief in bereaved parents. Therefore, the aim of this planned study is to develop and examine the effectiveness of a CBT-based mobile app, called My Grief, in reducing symptoms of prolonged grief, as well as other psychological symptoms, in bereaved parents. Another aim is to assess users’ experiences and adverse events of My Grief.

Methods and analysis: We will conduct a two-armed randomized waitlist-controlled trial. Parents living in Sweden, who lost a child to cancer between one and ten years ago, with elevated symptoms of prolonged grief, will be recruited to participate in the trial. The content of My Grief covers four main domains (Learn; Self-monitoring; Exercises; Get support) and builds on principles of CBT and the proven-effective PTSD Coach app. Participants in the intervention group will fill out online questionnaires at baseline and at 3-, 6- and 12-months follow-ups, and the waitlist-controls at baseline and at 3 months. The primary outcome will be prolonged grief symptoms at the 3 months follow-up. Secondary outcomes are posttraumatic stress and depression symptoms, quality of life, and cognitive behavioral variables (i.e., avoidance, rumination, negative cognitions).

Ethics and dissemination: Ethical approval has been received from the Swedish Ethical Review Authority (project no. 2021-00770). If the app is shown to be effective, the app will be made publicly accessible on app stores, so that it can benefit other bereaved parents.

Trial registration: Clinicaltrials.gov, identifier: NCT04552717.

National Category
Psychiatry Applied Psychology
Identifiers
urn:nbn:se:esh:diva-9329 (URN)10.1101/2021.04.23.21256003 (DOI)
Funder
Swedish Childhood Cancer Foundation, PR2018-0047Swedish Childhood Cancer Foundation, TJ2018-0002
Note

Published in: medRxiv : The Preprint Server for Health Sciences

Available from: 2021-12-02 Created: 2021-12-28Bibliographically approved
Ivéus, K., Eklund, R., Kreicbergs, U. & Lövgren, M. (2021). Family bonding as a result of the family talk intervention in pediatric oncology: Siblings’ experiences. Pediatric Blood & Cancer, 69(3), Article ID e29517.
Open this publication in new window or tab >>Family bonding as a result of the family talk intervention in pediatric oncology: Siblings’ experiences
2021 (English)In: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 69, no 3, article id e29517Article in journal (Refereed) Published
Abstract [en]

Background: Childhood cancer affects the whole family. Illness-related stressors increase the risk for poor family communication, affecting the family's well-being. Siblings describe worry and poor illness-related information. As there are few evaluated family interventions in pediatric oncology, this study aimed to pilot-test a family-centered intervention, the family talk intervention (FTI), in pediatric oncology. This paper examined the feasibility in terms of acceptability from the siblings' perspectives.

Methods: This study derives from a pilot study of 26 families including 37 siblings recruited from one pediatric oncology center. Standard FTI comprises six meetings with the family, led by two interventionists, with the main goal to facilitate family communication on illness-related topics (e.g., prognosis, the invisibility of healthy siblings). This paper focuses on interview and survey data from siblings after participation in FTI. The study is registered at ClinicalTrials.gov (Identifier NCT03650530).

Results: The siblings, aged 6 to 24 years, stated that the interventionists made the meetings feel like a safe environment and that it was a relief for the siblings to talk. They reported that FTI helped the family talk openly about illness-related topics, which they felt led to increased family understanding and improved relationships. The siblings described that FTI also helped them with their school situation. The majority of the siblings reported that FTI came at the right time and involved an appropriate number of meetings.

Conclusion: According to the siblings, the timing, content, and structure of FTI were appropriate. FTI showed benefits for both the siblings and each family as a whole.

Keywords
Beardslee's family intervention, Family talk intervention, Pediatric oncology, Psychosocial support, Siblings
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-9334 (URN)10.1002/pbc.29517 (DOI)000736710700001 ()34971075 (PubMedID)
Funder
Swedish Childhood Cancer Foundation, TJ2015-0005Swedish Childhood Cancer Foundation, PR2016-013Magnus Bergvall Foundation, 2018-02507
Available from: 2022-01-04 Created: 2022-01-04 Last updated: 2023-05-02Bibliographically approved
Alvariza, A., Jalmsell, L., Eklund, R., Lövgren, M. & Kreicbergs, U. (2021). The Family Talk Intervention in palliative home care when a parent with dependent children has a life-threatening illness: A feasibility study from parents' perspectives. Palliative & Supportive Care, 19(2), 154-160
Open this publication in new window or tab >>The Family Talk Intervention in palliative home care when a parent with dependent children has a life-threatening illness: A feasibility study from parents' perspectives
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2021 (English)In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 19, no 2, p. 154-160Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: One of the main goals of the Family Talk Intervention (FTI) is to increase communication within families with dependent children about illness-related consequences and to support parenting. FTI is family-centered and includes six manual-based meetings led by two interventionists. This study aims to evaluate the feasibility of the FTI in terms of acceptability from the perspective of parents in families with dependent children where one parent receives specialized palliative home care.

METHOD: A descriptive design employing mixed methods was used to evaluate the FTI in specialized palliative home care. In total, 29 parents participated in interviews and responded to a questionnaire following FTI. Qualitative content analysis and descriptive statistics were used for analyses.

RESULTS: FTI responded to both the ill parent's and the healthy co-parent's expectations, and they recommended FTI to other families. Parents found the design of FTI to be well-structured and flexible according to their families' needs. Many parents reported a wish for additional meetings and would have wanted FTI to start earlier in the disease trajectory. Parents also would have wished for a more thorough briefing with the interventionists to prepare before the start. The importance of the interventionists was acknowledged by the parents; their professional competence, engagement, and support were vital for finding ways to open communication within the family. The FTI meetings provided them with a setting to share thoughts and views. Parents clearly expressed that they would never have shared thoughts and feelings in a similar way without the meetings.

SIGNIFICANCE OF RESULTS: According to parents, FTI was found acceptable in a palliative home care context with the potential to add valuable support for families with minor children when a parent is suffering from a life-threatening illness.

Keywords
Children, Communication, Intervention, Life-threatening illness, Palliative care, Parents
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-8358 (URN)10.1017/S1478951520000735 (DOI)000644492700005 ()32854809 (PubMedID)
Funder
Familjen Erling-Perssons Stiftelse
Available from: 2020-11-02 Created: 2020-11-02 Last updated: 2023-04-11Bibliographically approved
Eklund, R. (2020). Barns erfarenheter av ”the Family Talk Intervention”: Att leva med en svårt sjuk förälder som vårdas inom specialiserad palliativ hemsjukvård. (Doctoral dissertation). Stockholm: Ersta Sköndal Bräcke högskola
Open this publication in new window or tab >>Barns erfarenheter av ”the Family Talk Intervention”: Att leva med en svårt sjuk förälder som vårdas inom specialiserad palliativ hemsjukvård
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
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:nbn:se:esh:diva-8131 (URN)978-91-9858-082-2 (ISBN)
Public defence
2020-06-10, Aulan, Campus Ersta, Stockholm, 09:30
Opponent
Supervisors
Available from: 2020-05-19 Created: 2020-05-15 Last updated: 2023-10-03
Eklund, R., Kreicbergs, U., Alvariza, A. & Lövgren, M. (2020). Children’s Self-Reports About Illness-Related Information and Family Communication When a Parent Has a Life-Threatening Illness. Journal of Family Nursing, 26(2), 102-110
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 1552-549X, Vol. 26, no 2, p. 102-110Article in journal (Refereed) Published
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)
Note

Publication status in dissertation: Epub ahead of print

Available from: 2020-02-06 Created: 2020-02-06 Last updated: 2023-04-11Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-9396-9800

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