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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
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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
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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
Norinder, M., Axelsson, L., Årestedt, K., Grande, G., Ewing, G. & Alvariza, A. (2023). Enabling professional and personal growth among home care nurses through using the Carer Support Needs Assessment Tool Intervention: An interpretive descriptive study. Journal of Clinical Nursing, 32(13-14), 4092-4102
Open this publication in new window or tab >>Enabling professional and personal growth among home care nurses through using the Carer Support Needs Assessment Tool Intervention: An interpretive descriptive study
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2023 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 32, no 13-14, p. 4092-4102Article in journal (Refereed) Published
Abstract [en]

Aim: To explore nurses' experiences of supporting family caregivers in specialised home care while learning to use the Carer Support Needs Assessment Tool Intervention.

Background: The Carer Support Needs Assessment Tool Intervention can provide guidance for discussions with family caregivers in specialised home care concerning their specific support needs. Little attention has been paid to how nurses experience the use of the intervention in their everyday practice.

Design: This longitudinal study adopted an inductive qualitative approach using inter-pretive description.

Methods: Interviews were conducted at two time points. A total of 22 interviews took place with 12 nurses recruited from six specialised home care services. Data were analysed using interpretive description.

Results: Nurses' everyday clinical practice changed while learning to use the Carer Support Needs Assessment Tool Intervention, and they experienced professional and personal growth. Their supportive inputs shifted from being reactive towards being more proactive. Their approach changed from taking on great professional responsi-bility, towards a shared responsibility with family caregivers. The support altered from ad hoc contacts in the hallway, towards scheduled trustful conversations. Nurses were concerned about the amount of time and energy this kind of support might require. They pointed to the importance of holding good nursing skills to conduct this new way of having conversations.

Conclusion: Nurses' everyday clinical practice can be further developed through the use of the Carer Support Needs Assessment Tool Intervention. Nurses may develop both professionally and personally, increasing their ability to provide person-centred support.

Relevance to Clinical Practice: With the use of the Carer Support Needs Assessment Tool Intervention, nurses can create trusting conversations with family caregivers of patients with life-threatening illnesses cared for in specialised home care.

Reporting Method: Reporting of the study follows the Consolidated Criteria For Reporting Qualitative Research (COREQ) checklist (File S1).

Patient or Public Contribution: Participating nurses were involved in discussing the study design.

Place, publisher, year, edition, pages
Wiley-Blackwell, 2023
Keywords
Family caregivers, Intervention nursing, Palliative care, Support needs
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-9883 (URN)10.1111/jocn.16577 (DOI)000879646000001 ()36345120 (PubMedID)
Available from: 2022-11-08 Created: 2022-11-08 Last updated: 2024-02-09Bibliographically approved
Norinder, M., Axelsson, L., Årestedt, K., Grande, G., Ewing, G. & Alvariza, A. (2023). Family caregivers’ experiences of discussing their needs with a nurse during specialised home care utilizing the carer support needs assessment tool intervention: A qualitative study. European Journal of Oncology Nursing, 66, Article ID 102412.
Open this publication in new window or tab >>Family caregivers’ experiences of discussing their needs with a nurse during specialised home care utilizing the carer support needs assessment tool intervention: A qualitative study
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2023 (English)In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 66, article id 102412Article in journal (Refereed) Published
Abstract [en]

Purpose The Carer Support Needs Assessment Tool Intervention (CSNAT-I) was designed to help family caregivers identify, reflect upon, and express their support needs in a conversation with a health care professional and gain tailored support. The CSNAT-I has shown positive effects for both nurses and family caregivers but for more comprehensive understanding this study aims to examine family caregivers' experiences of discussing their needs with a nurse during specialised home care, utilizing the CSNAT-I.

Methods The study used an inductive qualitative descriptive design based on framework analysis. Data was collected using individual semi-structured telephone interviews with 10 family caregivers, with a median age of 66, from four specialised home care services.

Results Family caregivers appreciated having scheduled meetings with nurses utilizing the CSNAT-I which gave them an opportunity to focus on what was important to them. Family caregivers experienced that the conversations were co-created with a flexible dialogue. The conversations provided new perspectives and insights which helped in finding possible solutions. Family caregivers felt empowered by the co-created conversation and took on a more active role in involving the rest of their family to find support to themselves and the patients.

Conclusion The CSNAT-I can facilitate communication between family caregivers and nurses leading to adequate supportive inputs. The intervention gives family caregivers an increased opportunity to be involved in their own support, which may enhance their sense of security. According to family caregivers’ experiences, CSNAT-I may be an adequate way to support family caregivers to reflect and discuss their needs.

Keywords
Caregivers, Home care, Intervention, Palliative, Qualitative, Support
National Category
Nursing
Research subject
The Individual in the Welfare Society, Palliative Care
Identifiers
urn:nbn:se:esh:diva-10405 (URN)10.1016/j.ejon.2023.102412 (DOI)37742425 (PubMedID)
Note

Publication status in dissertation: Accepted

Title in dissertation: Family caregivers’ experiences of talking with a nurse about their needs in a structured conversation using the Carer Support Needs Assessment Tool Intervention: A qualitative study in the context of specialised home care

Available from: 2023-09-20 Created: 2023-09-20 Last updated: 2023-12-13Bibliographically 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
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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
Norinder, M., Årestedt, K., Axelsson, L., Grande, G., Ewing, G. & Alvariza, A. (2023). Increased preparedness for caregiving among family caregivers in specialized home care by using the Carer Support Needs Assessment Tool Intervention. Palliative & Supportive Care, 1-7
Open this publication in new window or tab >>Increased preparedness for caregiving among family caregivers in specialized home care by using the Carer Support Needs Assessment Tool Intervention
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2023 (English)In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, p. 1-7Article in journal (Refereed) Epub ahead of print
Abstract [en]

OBJECTIVES: Family caregivers often feel insufficiently prepared for a caregiving role, experiencing challenges and demands related to care at home that may negatively affect their own quality of life. Supportive interventions have been shown to influence negative effects, but more studies are needed. Therefore, this study aims to explore potential effects of the Carer Support Needs Assessment Tool Intervention on preparedness, caregiver burden, and quality of life among Swedish family caregivers in specialized home care.

METHODS: The study had a pre-post intervention design and was conducted at 6 specialized home care services in Sweden. Family caregivers who received the intervention completed a questionnaire, including the Preparedness for caregiving scale, Caregiver Burden Scale, and Quality of Life in Life-Threatening Illness - Family carer version, at 2 time points, baseline and follow up, about 5 weeks later. Data were analyzed using descriptive statistics and Wilcoxon signed-rank test.

RESULTS: Altogether, 33 family caregivers completed the baseline and follow-up assessment. A majority were retired (n = 26, 81%) and women (n = 19, 58%) and two-fifths had a university degree (n = 13, 41%). The family caregivers had significantly increased their preparedness for caregiving between the baseline and follow-up assessment (Mdn = 18 vs. 20, p = 0.002). No significant changes were found on caregiver burden or quality of life.

SIGNIFICANCE OF RESULTS: The results add to knowledge regarding the Carer Support Needs Assessment Tool Intervention's potential to improve family caregiver outcomes. Findings suggest that the intervention may be used to improve the preparedness for caregiving and support among family caregivers in specialized home care.

Keywords
Caregivers, Home care, Intervention, Palliative, Preparedness
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-10342 (URN)10.1017/S1478951523000639 (DOI)37278216 (PubMedID)
Available from: 2023-06-19 Created: 2023-06-27 Last updated: 2023-11-30Bibliographically 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
Lundberg, T., Årestedt, K., Olsson, M., Alvariza, A. & Forinder, U. (2023). Posttraumatic Growth After Struggling With the Loss of a Parent in Young Adulthood. Omega
Open this publication in new window or tab >>Posttraumatic Growth After Struggling With the Loss of a Parent in Young Adulthood
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2023 (English)In: Omega, ISSN 0030-2228, E-ISSN 1541-3764Article in journal (Refereed) Epub ahead of print
Abstract [en]

This study aims to examine posttraumatic growth and its associations with parental bereavement among adolescents and young adults. Fifty-five young adults who had lost a parent to cancer at least 2 months earlier and were about to attend a support group at a palliative care service were recruited. Data was collected through questionnaires before support group participation, about 5-8 months after the loss and at a 6-month follow-up, about 14-18 months after the loss. The result shows that the young adults experienced posttraumatic growth, mostly in the domains Personal strength and Appreciation of life. Posttraumatic growth was associated with bereavement outcomes, especially life satisfaction, a feeling of meaning in future life and psychological health. The result is of value for health care professionals as it adds information about the importance of supporting constructive rumination to enhance the possibility to positive psychological change after a parent's death.

Keywords
Bereavement, Palliative care, Parental death, Posttraumatic growth, Young adult
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-10614 (URN)10.1177/00302228231187175 (DOI)37385294 (PubMedID)
Funder
Clas Groschinski Memorial FoundationFamiljen Erling-Perssons Stiftelse
Available from: 2024-01-15 Created: 2024-01-15 Last updated: 2024-01-15Bibliographically approved
Hudson, P. L., Gardiner, C., Alvariza, A., Nicholas Dionne-Odom, J., Öhlén, J., Carduff, E., . . . Payne, S. (2023). Strategies and checklist for designing and conducting palliative care research with family carers: EAPC international expert elicitation study. Palliative Medicine: A Multiprofessional Journal, 37(1), 163-173
Open this publication in new window or tab >>Strategies and checklist for designing and conducting palliative care research with family carers: EAPC international expert elicitation study
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2023 (English)In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 37, no 1, p. 163-173Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Palliative care services seek to improve the wellbeing of family carers of people living with serious and life-limiting illness. To help achieve this goal, systematic reviews have recommended priority areas for family carer research and the need to improve the quality of study design. Policy makers have also advocated for enhanced family carer support. However, there are specific methodological considerations and challenges in designing and conducting carer research conducted during the course of the serious illness trajectory and in bereavement.

AIM: To develop strategies to improve the design and conduct of research with family carers.

DESIGN: Expert elicitation study using an adapted version of the 'Identify, Discuss, Estimate and Aggregate' elicitation protocol, supplemented with strategies from peer-reviewed literature.

SETTING/PARTICIPANTS: Nine members of the management committee of the European Association for Palliative Care's Reference group on family carer research, comprising international senior research academics in family caregiving.

RESULTS: A compilation of recommended strategies and checklist was created to: (a) help researchers plan research involving family carers focussing on: preparation, conduct and dissemination and (b) assist ethics committees and funding bodies to evaluate proposals.

CONCLUSIONS: The strategies and checklist for conducting research with family carers may enhance methodologically rigorous research. Consequently, researchers, practitioners and policy makers will not only gain a more comprehensive understanding of the unmet needs of family carers but also promote the development of empirically sound interventions.

Place, publisher, year, edition, pages
Sage Publications, 2023
Keywords
Palliative care, Caregivers, Family, Research, Terminal care
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-9906 (URN)10.1177/02692163221136162 (DOI)000886761500001 ()36380493 (PubMedID)
Available from: 2022-11-21 Created: 2022-11-21 Last updated: 2024-02-09Bibliographically approved
Carlsson, N., Alvariza, A., Bremer, A., Axelsson, L. & Årestedt, K. (2023). Symptoms of Prolonged Grief and Self-Reported Health Among Bereaved Family Members of Persons Who Died From Sudden Cardiac Arrest. Omega, 87(1), 66-86
Open this publication in new window or tab >>Symptoms of Prolonged Grief and Self-Reported Health Among Bereaved Family Members of Persons Who Died From Sudden Cardiac Arrest
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2023 (English)In: Omega, ISSN 0030-2228, E-ISSN 1541-3764, Vol. 87, no 1, p. 66-86Article in journal (Refereed) Published
Abstract [en]

Sudden cardiac arrest is common and is one of the leading causes of death in the western world, and the sudden loss following cardiac arrest may have a significant impact on bereaved family members' health. Therefore, the aim of this study was to describe symptoms of prolonged grief and self-reported health among bereaved family members of persons who died from sudden cardiac arrest, with comparisons between spouses and non-spouses. This was a cross-sectional observation study with 108 adult family members who completed a questionnaire. A fifth of the family members reported prolonged grief, and problems with self-reported health were common, especially regarding anxiety. Spouses reported more problems with prolonged grief and self-reported health compared with non-spouses. The risk of these family members developing prolonged grief and health problems should be recognized, and professional support should be offered.

Place, publisher, year, edition, pages
Sage Publications, 2023
Keywords
Bereavement, Family, Grief, Health, Heart arrest, Sudden death
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-8857 (URN)10.1177/00302228211018115 (DOI)000652864800001 ()34011206 (PubMedID)
Available from: 2021-05-25 Created: 2021-05-25 Last updated: 2024-02-09Bibliographically 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/0000-0003-2711-0245

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