Change search
Link to record
Permanent link

Direct link
Alternative names
Publications (10 of 118) Show all publications
Holm, M., Lövgren, M., Alvariza, A., Eklund, R. & Kreicbergs, U. (2024). Experiences of being a severely ill parent of dependent children receiving care at home: Hopes and challenges. Palliative & Supportive Care, 22(1), 169-173
Open this publication in new window or tab >>Experiences of being a severely ill parent of dependent children receiving care at home: Hopes and challenges
Show others...
2024 (English)In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 22, no 1, p. 169-173Article in journal (Refereed) Published
Abstract [en]

OBJECTIVES: Multiple studies have focused on severely ill patients in the role as parents of dependent children, yet few have explored the thoughts and feelings within this group during palliative home care.

METHODS: This qualitative study derives from a pilot intervention study, the Family Talk Intervention (FTI), in specialized palliative home care. The FTI is a support program with the main goal to increase family communication about illness-related topics. The study is based on field notes from 104 sessions with 20 parents taken by an interventionist during intervention delivery. The field notes were analyzed using the principles of qualitative content analysis.

RESULTS: The field notes revealed several challenging situations for parents with severe illness. A major issue was how to find ways to talk to their children about their illness and prognosis. The parents expressed guilt for being unable to fulfill their roles as parents and partners. Existing family conflicts had escalated with the illness, according to some parents. Despite being affected by illness, parents tried to have hope, if only for small things - such as a period of ordinary family life.

SIGNIFICANCE OF RESULTS: Severely ill parents in specialized palliative home care seek support regarding how to communicate and stay connected to their roles in the family, which is a struggle when a parent is cared for at home, while it in contrast may promote normality and hope. Communication with children is vital and needs to be brought to the attention of health-care professionals. A family-centered focus, involving both parents and children, should be embraced.

Keywords
Children, Communication, Intervention, Palliative home care, Parents
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-10143 (URN)10.1017/S1478951523000184 (DOI)36987845 (PubMedID)
Available from: 2023-04-11 Created: 2023-04-11 Last updated: 2024-01-15Bibliographically approved
Häger Tibell, L., Årestedt, K., Holm, M., Wallin, V., Steineck, G., Hudson, P., . . . Alvariza, A. (2024). Preparedness for caregiving and preparedness for death: Associations and modifiable thereafter factors among family caregivers of patients with advanced cancer in specialized home care. Death Studies, 48(4), 407-416
Open this publication in new window or tab >>Preparedness for caregiving and preparedness for death: Associations and modifiable thereafter factors among family caregivers of patients with advanced cancer in specialized home care
Show others...
2024 (English)In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 48, no 4, p. 407-416Article in journal (Refereed) Published
Abstract [en]

The purpose of this study was to (1) explore associations between preparedness for caregiving and preparedness for death among family caregivers of patients with advanced cancer and (2) explore modifiable preparedness factors, such as communication and support. Data was derived from a baseline questionnaire collected in specialized home care. The questionnaire included socio-demographics, the Preparedness for Caregiving Scale, and single items addressing preparedness for death, received support and communication about incurable illness. Data was analyzed using descriptive statistics and Spearman correlations. Altogether 39 family caregivers participated. A significant association was found between preparedness for caregiving and preparedness for death. Received support and communication about the illness was associated with higher levels of preparedness for caregiving and death. This study contributes to evidence on the association between preparedness for caregiving and death, but also that communication and support employed by healthcare professionals could improve family caregiver preparedness and wellbeing. 

National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-10612 (URN)10.1080/07481187.2023.2231388 (DOI)37441803 (PubMedID)
Available from: 2024-01-12 Created: 2024-01-12 Last updated: 2024-02-16Bibliographically approved
Ayoub, M., Udo, C., Årestedt, K., Kreicbergs, U. & Lövgren, M. (2024). The Family Talk Intervention in Pediatric Oncology: Potential Effects Reported by Parents. Children, 11(1), Article ID 95.
Open this publication in new window or tab >>The Family Talk Intervention in Pediatric Oncology: Potential Effects Reported by Parents
Show others...
2024 (English)In: Children, E-ISSN 2227-9067, Vol. 11, no 1, article id 95Article in journal (Refereed) Published
Abstract [en]

Background: Childhood cancer impacts the family system and has psychosocial consequences for all family members. For the parents, the ill child, and the siblings to be able to adjust to this challenging situation, the whole family needs access to psychosocial support. However, only a few such family interventions in pediatric oncology have been evaluated. The aim of this study was to explore the potential effects of a family-centered intervention, the Family Talk Intervention (FTI), in pediatric oncology from the parents’ perspectives.

Methods: A concurrent mixed methods design was used for this study. Data were derived from a pilot study of 26 families recruited from one pediatric oncology center in Sweden. This study focused on questionnaire and interview data from 52 parents.

Results: After participation in FTI, the parents felt more satisfied with the conversations within the family about the illness. FTI also contributed to strengthened family togetherness, including more open communication and improved family relations, as described by the parents. Parents further expressed that they felt more empowered in their parenting role following FTI.

Conclusions: The findings regarding FTI’s ability to improve family communication and family relations, thus strengthening family togetherness in families with childhood cancer, are promising. This provides motivation for a large-scale study of FTIs in pediatric oncology.

Place, publisher, year, edition, pages
Abbaye de Maredsous, 2024
Keywords
Family Talk Intervention, Pediatric oncology, Psychosocial support, Family, Parents
National Category
Other Medical Sciences
Research subject
The Individual in the Welfare Society, Palliative Care
Identifiers
urn:nbn:se:esh:diva-10638 (URN)10.3390/children11010095 (DOI)
Available from: 2024-01-22 Created: 2024-01-22 Last updated: 2024-01-22Bibliographically approved
Landfeldt, E., Udo, C., Lövgren, M., Sejersen, T. & Kreicbergs, U. (2023). Health-related quality of life of children with spinal muscular atrophy in Sweden: A prospective cohort study in the era of disease-modifying therapy. European journal of paediatric neurology, 46, 67-73
Open this publication in new window or tab >>Health-related quality of life of children with spinal muscular atrophy in Sweden: A prospective cohort study in the era of disease-modifying therapy
Show others...
2023 (English)In: European journal of paediatric neurology, ISSN 1090-3798, E-ISSN 1532-2130, Vol. 46, p. 67-73Article in journal (Refereed) Published
Abstract [en]

The objective of this study was to estimate change over time in health-related quality of life (HRQoL) of children with spinal muscular atrophy (SMA) in Sweden. Children with SMA were identified via the National Patient Register by the National Board of Health and Welfare in Sweden. Patient HRQoL was caregiver proxy-assessed using the Pediatric Quality of Life Inventory 4.0 Generic Core Scales at baseline, as well as at 6, 12, and 18 months of follow-up. Results were stratified by SMA type. Mothers and fathers to 27 children with SMA (mean patient age: 9.17 years; 59% female) participated in the study. All patients received disease-modifying therapy. At baseline, across SMA types, the mean total score was estimated at between 52.68 and 59.19, Physical Functioning score at between 26.39 and 40.34, Emotional Functioning score at between 66.82 and 68.57, Social Functioning score at between 55.00 and 70.45, and School Functioning score at between 70.45 and 78.33. The mean annual total score change was estimated at −2.03 for SMA type I, 4.11 for SMA type II, and 1.12 for SMA type III. In conclusion, we show that SMA has a detrimental impact on HRQoL that extends above and beyond somatic disability. Children with SMA type II experienced a dramatic increase in HRQoL over time, predominantly related to improvement in physical and social functioning. Our data helps quantify the patient burden of disease and adds to the rapidly expanding body of evidence of the effectiveness of recently approved disease-modifying therapies for SMA.

Place, publisher, year, edition, pages
Elsevier, 2023
National Category
Nursing
Research subject
The Individual in the Welfare Society, Palliative Care
Identifiers
urn:nbn:se:esh:diva-10639 (URN)10.1016/j.ejpn.2023.06.008 (DOI)37473536 (PubMedID)
Funder
Anna-Lisa and Bror Björnsson FoundationStockholm County Council, ALF FoUI-953828Stiftelsen Sunnerdahls Handikappfond
Available from: 2024-01-22 Created: 2024-01-22 Last updated: 2024-01-22Bibliographically approved
Holm, M., Weber Falk, M., Alvariza, A., Sveen, J. & Kreicbergs, U. (2023). How parents of dependent children reason about their partner's impending death due to cancer. Death Studies, 47(1), 105-110
Open this publication in new window or tab >>How parents of dependent children reason about their partner's impending death due to cancer
Show others...
2023 (English)In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 47, no 1, p. 105-110Article in journal (Refereed) Published
Abstract [en]

This paper explores how bereaved parents with dependent children reasoned about their partner's impending death due to cancer. Questionnaires were used to collect data from 42 cancer-bereaved parents of dependent children in Sweden. The results showed that most of the parents had thought, at least once, that death would be best for their partner's own sake. A few parents had also thought that it would be best for everyone if their partner died. Many parents had a wish to keep up hope, no matter what. However, living with a partner with advanced illness and dependent children was described as extremely stressful.

Place, publisher, year, edition, pages
Taylor & Francis, 2023
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-9272 (URN)10.1080/07481187.2021.1992807 (DOI)000719624300001 ()34787534 (PubMedID)
Available from: 2021-12-09 Created: 2021-12-09 Last updated: 2024-02-09Bibliographically approved
Högberg, C., Wallin, V., Kreicbergs, U. & Alvariza, A. (2023). Närståendes erfarenheter av webbaserat stöd under pågående specialiserad hemsjukvård: ’Närstående.se’. In: : . Paper presented at Framtidens palliativa vård - Den 8:e nationella konferensen i palliativ vård, 2-4 oktober 2023, Malmö.
Open this publication in new window or tab >>Närståendes erfarenheter av webbaserat stöd under pågående specialiserad hemsjukvård: ’Närstående.se’
2023 (Swedish)Conference paper, Poster (with or without abstract) (Refereed)
Abstract [sv]

Bakgrund Stöd till närstående är en grundläggande del av palliativ vård. Stödinterventioner som erbjudits i grupp in-real-life har utvärderats med positiva effekter. Det kan dock vara svårt för närstående att delta på grund av svårigheter att lämna den sjuke och formatet passar heller inte alla. Webbaserade lösningar kan möjliggöra för fler att ta del av stöd utifrån egna förutsättningar och behov. Olika alternativ finns men mer kunskap om webbaserat stöd behövs.

Syfte Att undersöka närståendes erfarenheter av stöd i samband med deltagande i en webbaserad intervention ’Närstående.se’ under pågående specialiserad hemsjukvård.

Metod Webbsidan ’Närstående.se’ är baserad på tidigare forskning och innehåller kortare filmer där vårdpersonal (autentisk) samtalar med närstående (skådespelare) om ämnen som ofta är angelägna för närstående. Filmerna kompletteras med fördjupande texter och på webbsidan finns ett modererat chattforum. Studien ingår i ett projekt med randomiserad kontrollerad design. Kvalitativa intervjuer genomfördes med 7 närstående varav 5 partners, 1 syskon och 1 dotter, mellan 46–80 år. Data analyserades med kvalitativ innehållsanalys.

Resultat Möjligheten att vid behov och i lugn och ro ta del av stöd hemifrån uppskattades. Närstående uttryckte att det genom ’Närstående.se’ kunde vara lättare att närma sig frågor om svår sjukdom och död. Användning av webbsidan gav närstående igenkänning, bekräftelse och normaliserande av svåra känslor. Att ta del av webbsidan bidrog till att svåra ämnen hamnade i fokus vilket kunde underlätta samtal inom familjen. Webbsidan hade använts i olika omfattning men vetskapen om att ha tillgång till den upplevdes som en trygghet.

Konklusion Närstående upplever att webbaserat stöd finns när de behöver det. Att närstående kan välja att ta del av specifikt stöd vid behov innebär att stödet blir personcentrerat och anpassat för deras behov.

National Category
Nursing
Research subject
The Individual in the Welfare Society, Palliative Care
Identifiers
urn:nbn:se:esh:diva-10429 (URN)
Conference
Framtidens palliativa vård - Den 8:e nationella konferensen i palliativ vård, 2-4 oktober 2023, Malmö
Available from: 2023-10-02 Created: 2023-10-02 Last updated: 2023-10-02Bibliographically approved
Akkawi El Edelbi, R., Eksborg, S., Kreicbergs, U., Lövgren, M., Wallén, K., Ekman, J. & Lindemalm, S. (2023). Parents' experiences of handling oral anticancer drugs at home: 'It all falls on me …'. Journal of Evaluation In Clinical Practice, 29(1), 94-100
Open this publication in new window or tab >>Parents' experiences of handling oral anticancer drugs at home: 'It all falls on me …'
Show others...
2023 (English)In: Journal of Evaluation In Clinical Practice, ISSN 1356-1294, E-ISSN 1365-2753, Vol. 29, no 1, p. 94-100Article in journal (Refereed) Published
Abstract [en]

AIM: The aim of this study was to describe the experiences of parents handling oral anticancer drugs in a home setting.

METHODS: Parents of children with cancer were recruited from a paediatric oncology ward in Sweden to participate in an interview. The interviews were transcribed verbatim and subjected to qualitative content analysis.

RESULTS: We found the following categories and subcategories: parents' views on the provided information-lack of, too little or contradictory information, and parents' preferences for information delivery; safety over time; correct drug dose; and drug administration. As time passed, most parents adapted to their child's illness, felt safer and found it easier to take in and process any given information. Parents preferred information in different formats (written, movie clips and orally) and in their mother tongue. Many parents were aware of the importance of giving an accurate dose to their child and described the process of drug administration as overwhelming.

CONCLUSION: Parents need to be provided with accurate, timely, nonconflicting and repeated information-in different forms and in their mother tongue-on how to handle oral anticancer drugs at home.

Place, publisher, year, edition, pages
Wiley-Blackwell, 2023
Keywords
Experiences, Handling, Home, Oral anticancer drugs, Parents
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-9719 (URN)10.1111/jep.13737 (DOI)000836018800001 ()35927976 (PubMedID)
Available from: 2022-08-19 Created: 2022-08-19 Last updated: 2024-02-09Bibliographically approved
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
Show others...
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
Show others...
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
Projects
The Family Talk Intervention in clinical practice when a parent with dependent children or a child is severely ill: An effectiveness-implementation study [2021-00999_VR]; Marie Cederschiöld University; Publications
Holm, M., Lövgren, M., Alvariza, A., Eklund, R. & Kreicbergs, U. (2024). Experiences of being a severely ill parent of dependent children receiving care at home: Hopes and challenges. Palliative & Supportive Care, 22(1), 169-173Holm, M., Lundberg, T., Lövgren, M. & Ljungman, L. (2024). Parenting a child with cancer and maintaining a healthy couple relationship: Findings from the Family Talk Intervention. Pediatric Blood & Cancer, 71(1)Ayoub, M., Udo, C., Årestedt, K., Kreicbergs, U. & Lövgren, M. (2024). The Family Talk Intervention in Pediatric Oncology: Potential Effects Reported by Parents. Children, 11(1), Article ID 95. Thermaenius, I., Udo, C., Alvariza, A. & Lövgren, M. (2023). The Family Talk Intervention för barnfamiljer med palliativa vårdbehov: Hälso- och sjukvårdskuratorers initiala erfarenheter av hinder och möjligheter i klinisk praktik. In: : . Paper presented at Framtidens palliativa vård - Den 8:e nationella konferensen i palliativ vård, 2-4 oktober 2023, Malmö. 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, 512-518Eklund, 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), 1655-1666Eklund, 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), 126-154Lövgren, M. (2022). Ett stödprogram för barnfamiljer när någon i familjen är svårt sjuk: The Family Talk Intervention. Palliativ vård - tidskriften för palliativ vård i Sverige (2), 16-18Lövgren, M., Udo, C. & Kreicbergs, U. (2022). Is the family talk intervention feasible in paediatric oncology?: An evaluation of a family-based psychosocial intervention. Acta Paediatrica, 111(3), 684-692Lövgren, M. (2022). Samtal om det som är svårt. Barnläkaren, 14-15
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-8185-781x

Search in DiVA

Show all publications