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Holm, M. & Alvariza, A. (2023). Anhöriga till personer med palliativa behov. In: Gunilla Klingberg & Ulrika Hallberg (Ed.), Stora anhörigboken: (pp. 229-249). Lund: Studentlitteratur AB
Open this publication in new window or tab >>Anhöriga till personer med palliativa behov
2023 (Swedish)In: Stora anhörigboken / [ed] Gunilla Klingberg & Ulrika Hallberg, Lund: Studentlitteratur AB, 2023, p. 229-249Chapter in book (Other academic)
Place, publisher, year, edition, pages
Lund: Studentlitteratur AB, 2023
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-5112 (URN)9789144156781 (ISBN)
Available from: 2024-01-15 Created: 2024-01-15 Last updated: 2024-01-15Bibliographically approved
Holm, M., Lövgren, M., Alvariza, A., Eklund, R. & Kreicbergs, U. (2023). Experiences of being a severely ill parent of dependent children receiving care at home: Hopes and challenges. Palliative & Supportive Care, 1-5
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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2023 (English)In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, p. 1-5Article in journal (Refereed) Epub ahead of print
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:shh:diva-4899 (URN)10.1017/S1478951523000184 (DOI)36987845 (PubMedID)
Available from: 2023-05-17 Created: 2023-05-17 Last updated: 2023-05-17Bibliographically approved
Holm, M., Lövgren, M., Alvariza, A., Eklund, R. & Kreicbergs, U. (2023). Experiences of being a severely ill parent of dependent children receiving care at home: Hopes and challenges. In: : . Paper presented at 18th World Congress of the European Association for Palliative Care (EAPC), Rotterdam, Nederländerna, 15-17 juni 2023.
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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2023 (English)Conference paper, Poster (with or without abstract) (Other academic)
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-5102 (URN)
Conference
18th World Congress of the European Association for Palliative Care (EAPC), Rotterdam, Nederländerna, 15-17 juni 2023
Available from: 2024-01-08 Created: 2024-01-08 Last updated: 2024-01-08Bibliographically approved
Holm, M., Lundberg, T., Lövgren, M. & Ljungman, L. (2023). Living with childhood cancer and upholdning a healthy couple relationship - findings from the Family Talk Intervention. In: : . Paper presented at 18th World Congress of the European Association for Palliative Care (EAPC), Rotterdam, Nederländerna, 15-17 juni 2023.
Open this publication in new window or tab >>Living with childhood cancer and upholdning a healthy couple relationship - findings from the Family Talk Intervention
2023 (English)Conference paper, Oral presentation only (Other academic)
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-5093 (URN)
Conference
18th World Congress of the European Association for Palliative Care (EAPC), Rotterdam, Nederländerna, 15-17 juni 2023
Available from: 2023-12-20 Created: 2023-12-20 Last updated: 2023-12-20Bibliographically approved
Holm, M., Lundberg, T., Lövgren, M. & Ljungman, L. (2023). Parenting a child with cancer and maintaining a healthy couple relationship: Findings from the Family Talk Intervention. Pediatric Blood & Cancer, Article ID e30709.
Open this publication in new window or tab >>Parenting a child with cancer and maintaining a healthy couple relationship: Findings from the Family Talk Intervention
2023 (English)In: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, article id e30709Article in journal (Refereed) Epub ahead of print
Abstract [en]

BACKGROUND: Despite the challenges that caring for a child with cancer brings for parents, little knowledge is available concerning the effects on the parents' couple relationship. Furthermore, few interventions have been designed to support parents in their couple relationship. The aim of this paper was, therefore, to explore parents' experiences of their couple relationship while having a dependent child with cancer and the support they received from a family-based intervention, the Family Talk Intervention (FTI).

METHODS: Data for this paper were taken from semi-structured interviews performed in a pilot study of the FTI in the context of pediatric oncology. In total, 22 couples were interviewed after participating in the FTI. The interviews were transcribed and analyzed using qualitative content analysis.

RESULTS: Parents described how maintaining a couple relationship while living with childhood cancer could be very challenging and was not given the highest priority. The FTI was considered a way of providing important support to the couple and a chance for them to sit down together and listen to each other's perspectives on the situation. Parents described that the FTI had helped them gain an increased mutual understanding, sometimes also helping them to realize that they needed more extensive professional support in their relationship.

CONCLUSIONS: Living with childhood cancer and upholding a healthy couple relationship is challenging for parents. The FTI has the potential to support couples, mainly by providing opportunities for parents to communicate with each other. However, some couples may be in need of a tailored clinical intervention.

Keywords
Childhood cancer, Parents, Psycho-educational, Relationship, Support
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-5040 (URN)10.1002/pbc.30709 (DOI)37817346 (PubMedID)
Available from: 2023-10-17 Created: 2023-10-17 Last updated: 2023-10-17Bibliographically approved
Häger Tibell, L., Årestedt, K., Holm, M., Wallin, V., Steineck, G., Hudson, P., . . . Alvariza, A. (2023). 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
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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2023 (English)In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683Article in journal (Refereed) Epub ahead of print
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:shh:diva-4989 (URN)10.1080/07481187.2023.2231388 (DOI)37441803 (PubMedID)
Available from: 2023-08-23 Created: 2023-08-23 Last updated: 2023-08-23Bibliographically approved
Doveson, S., Holm, M., Fransson, P. & Wennman-Larsen, A. (2022). Identification of early symptoms and changes in QoL and functioning among men with primary localized prostate cancer who later develop metastases: A matched, prospective study. Palliative & Supportive Care
Open this publication in new window or tab >>Identification of early symptoms and changes in QoL and functioning among men with primary localized prostate cancer who later develop metastases: A matched, prospective study
2022 (English)In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523Article in journal (Refereed) Epub ahead of print
Abstract [en]

OBJECTIVE: To identify early symptoms and changes in QoL among men with primary localized prostate cancer (PC) who later develop metastases.

METHODS: From an ongoing prospective study of 3.885 men with localized PC, primarily treated with radiotherapy (RT), a subsample of men developing metastatic PC (mPC) following the first year after the start of RT and that had died during the follow-up (mPC group, n = 107) were matched against men who did not develop metastases (non-mPC group, n = 214). Data were collected using the EORTC QLQ-C30 and PCSS instruments. Non-parametric tests were performed for comparisons at baseline, end of RT, 3 months, and 1, 2, 3, and 5 years after RT.

RESULTS: The final sample consists of 317 men (mPC n = 106; non-mPC n = 211) who had completed at least one questionnaire. Initially, symptom levels were generally low and QoL and functioning high in both groups. An increasing difference between the groups was found, where the mPC group gradually deteriorated from the 2-year follow-up. Significant differences were found for several outcomes at 3 and 5 years. In a sensitivity analysis, where metastatic patients were removed from the time-point of verified metastases, most differences did not remain significant. Significant deterioration over time was seen within both groups for some outcomes.

SIGNIFICANCE OF RESULTS: The results indicate that unmet supportive needs occur over time among these men. Worsening QoL or functioning and symptoms may be difficult to recognize when the development is gradual over several years, and with various access to systematic follow-up in late phases. This highlights the need for continuous monitoring of PC patients to detect needs for supportive interventions early and throughout the disease course, also among those with non-metastatic disease who have undergone curatively intended treatment.

Keywords
Long-term follow-up, Prostate cancer, Quality of life, Supportive care, Symptoms
National Category
Cancer and Oncology
Identifiers
urn:nbn:se:shh:diva-4349 (URN)10.1017/S1478951522000074 (DOI)35139981 (PubMedID)
Available from: 2022-03-09 Created: 2022-03-09 Last updated: 2022-12-15Bibliographically approved
Rönningås, U., Holm, M., Doveson, S., Fransson, P., Beckman, L. & Wennman-Larsen, A. (2022). Signs and symptoms in relation to progression, experiences of an uncertain illness situation in men with metastatic castration-resistant prostate cancer: A qualitative study. European Journal of Cancer Care, 31(4), Article ID e13592.
Open this publication in new window or tab >>Signs and symptoms in relation to progression, experiences of an uncertain illness situation in men with metastatic castration-resistant prostate cancer: A qualitative study
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2022 (English)In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 31, no 4, article id e13592Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: Signs and symptoms are important in monitoring prostate cancer, but there is a lack of understanding about the men's interpretation of signs and symptoms in relation to disease progression in advanced phases of the disease. The aim was to illuminate the experience of signs and symptoms in relation to disease progression in men with metastatic castration-resistant prostate cancer (mCRPC).

METHOD: Thirty longitudinal interviews were conducted with 11 men undergoing life-prolonging treatment for mCRPC. Conventional content analysis was used.

RESULTS: The results illuminate an uncertainty that the men experience when interpreting signs and symptoms. The overarching theme was The experience of an uncertain illness situation within the framework of progression, with four subthemes: Symptoms triggering thoughts about disease progression; Making sense of signs, also in the absence of symptoms; Making sense of symptoms during treatment; Progression triggering thoughts about the remainder of life.

CONCLUSION: In the uncertain illness situation, the men strive to make sense of signs and symptoms based on previous experiences and in relation to disease progression. Understanding the men's perspectives on signs and symptoms in this late phase may help health care professionals communicate about disease progression considering the balance between treatment outcome and quality of life.

Keywords
Metastatic castration-resistant prostate cancer, Prostate-specific antigen, Prostatic neoplasm, Qualitative research, Signs and symptoms, Uncertainty
National Category
Cancer and Oncology
Identifiers
urn:nbn:se:shh:diva-4460 (URN)10.1111/ecc.13592 (DOI)35411645 (PubMedID)
Available from: 2022-05-03 Created: 2022-05-03 Last updated: 2022-08-31Bibliographically approved
Holm, M., Weber Falk, M., Lövgren, M., Kreicbergs, U., Alvariza, A. & Sveen, J. (2022). Sources of social support and its importance for cancer-bereaved spouses and their minor children: A cross-sectional study. Death Studies, 46(4), 996-1002
Open this publication in new window or tab >>Sources of social support and its importance for cancer-bereaved spouses and their minor children: A cross-sectional study
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2022 (English)In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 46, no 4, p. 996-1002Article in journal (Refereed) Published
Abstract [en]

The aim of this study was to evaluate the sources from which bereaved families with minor children reported receiving social support after the death of a parent/partner and which sources they perceived as important. Using an online platform, 23 adolescents, 42 parents, and 27 parent proxies for children aged 4-11 years, completed questionnaires. Family and friends were valued as the most important sources of social support, while social support from societal institutions, such as health care and school, was considered less important, and insufficient.

National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-3779 (URN)10.1080/07481187.2020.1780344 (DOI)32552419 (PubMedID)
Available from: 2020-06-30 Created: 2020-06-30 Last updated: 2022-05-11Bibliographically approved
Häger Tibell, L., Alvariza, A., Kreicbergs, U., Wallin, V., Steineck, G. & Holm, M. (2022). Web-based support for spouses of patients with life-threatening illness cared for in specialized home care: A feasibility study. Palliative & Supportive Care
Open this publication in new window or tab >>Web-based support for spouses of patients with life-threatening illness cared for in specialized home care: A feasibility study
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2022 (English)In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523Article in journal (Refereed) Epub ahead of print
Abstract [en]

OBJECTIVES: Psychoeducational interventions for family caregivers have shown to be effective but not possible for all caregivers to attend; thus, web-based interventions may be a complement. This study aimed to evaluate feasibility of a web-based intervention, "narstaende.se," from the perspective of spouses of patients receiving specialized home care.

METHODS: A website was developed, containing videos with conversations between health-care professionals and family caregivers (actors), informative texts, links to further information, and a chat forum. The aim of the website is to provide support and promote preparedness for caregiving and death, and the content is theoretically and empirically grounded. The study had a descriptive cross-sectional design. Altogether, 26 spouses answered a questionnaire, before accessing the website, and 4 weeks after this, 12 spouses were interviewed. Descriptive statistics and qualitative content analysis were used.

RESULTS: Spouses experienced the website as being easy to use, welcoming, and with relevant content. Participating spouses would recommend "narstaende.se" to others in similar situations, and the majority found the website introduced timely. Videos seemed easily accessible and were most used, contributing to a feeling of recognition and sharing the situation. The online format was perceived as flexible, but still not all spouses visited the website, stating the desire for support in real life.

SIGNIFICANCE OF RESULTS: A web-based intervention can be feasible for spouses in specialized home care; however, the digital format is not suitable for everyone. Further research is needed to determine the website's potential to provide support and increase preparedness for family caregivers in general.

Keywords
End of life, Family caregivers, Palliative care, Web-based support, eHealth/digital support
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-4699 (URN)10.1017/S1478951522001602 (DOI)36537025 (PubMedID)
Available from: 2023-01-04 Created: 2023-01-04 Last updated: 2023-01-04Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0003-2074-5985

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