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Karlsson Rosenblad, A., Westman, B., Bergkvist, K., Segersvärd, R., Roos, N., Bergenmar, M. & Sharp, L. (2023). Differences in health-related quality of life between native and foreign-born gynaecological cancer patients in Sweden: A five-year cross-sectional study. Quality of Life Research
Open this publication in new window or tab >>Differences in health-related quality of life between native and foreign-born gynaecological cancer patients in Sweden: A five-year cross-sectional study
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2023 (English)In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649Article in journal (Refereed) Epub ahead of print
Abstract [en]

PURPOSE: To examine differences in health-related quality of life (HRQoL) between native and foreign-born gynaecological cancer patients in Sweden, taking into account clinical, demographic, and socioeconomic factors.

METHODS: The 30-item European Organisation for Research and Treatment of Cancer quality of life questionnaire (QLQ-C30) and a study-specific questionnaire covering demographic and socioeconomic factors were answered by 684 women aged ≥ 18 years old, diagnosed in 2014, 2016, or 2018 with gynaecological cancer in the Stockholm-Gotland health care region, Sweden. Clinical data were obtained from the Swedish Cancer Register. Data were analysed using the Kruskal-Wallis test and linear regression.

RESULTS: The women had a mean age of 65.4 years, with 555 (81.1%) born in Sweden, 54 (7.9%) in other Nordic countries (ONC), 43 (6.3%) in other European countries (OEC), and 32 (4.7%) in non-European countries (NEC). HRQoL differed significantly between the four groups for 14 of the 15 QLQ-C30 scales/items. On average, Swedish-born women scored 2.0, 15.2, and 16.7 points higher for QoL/functioning scales/items and 2.2, 14.1, and 18.7 points lower for symptom scales/items, compared with ONC-, OEC-, and NEC-born women, respectively. In adjusted analyses, none of the differences between Swedish-born and ONC-born women were significant, while for OEC- and NEC-born women the differences were significant for most QLQ-C30 scales/items.

CONCLUSION: HRQoL differs between native and foreign-born gynaecological cancer patients in Sweden, with lower HRQoL the further from Sweden the women are born. A more individualised cancer care, with tailored support to optimize HRQoL is needed for this vulnerable group of patients.

Keywords
Demography, Foreign-born, Gynaecological cancer, Health-related quality of life, Socioeconomic factors, Women
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-5075 (URN)10.1007/s11136-023-03548-1 (DOI)37930556 (PubMedID)
Available from: 2023-11-23 Created: 2023-11-23 Last updated: 2023-11-23Bibliographically approved
Westman, B., Bergkvist, K., Sharp, L. & Bergenmar, M. (2023). It takes two to tango: Agreement between patients and contact nurses on opportunities for patient participation in cancer care. In: : . Paper presented at 5th Nordic Conference in Nursing Research, Reykjavik, Island, 2-4 oktober 2023.
Open this publication in new window or tab >>It takes two to tango: Agreement between patients and contact nurses on opportunities for patient participation in cancer care
2023 (English)Conference paper, Oral presentation only (Other academic)
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-5098 (URN)
Conference
5th Nordic Conference in Nursing Research, Reykjavik, Island, 2-4 oktober 2023
Available from: 2023-12-20 Created: 2023-12-20 Last updated: 2023-12-20Bibliographically approved
Holmberg, K., Bergkvist, K., Adalsteinsdóttir, S., Wengström, Y. & Lundh Hagelin, C. (2023). Nursing as a balancing act in allogeneic hematopoietic cell transplantation: Nurses' experiences through participation in workshops. European Journal of Oncology Nursing, 63, 102300, Article ID 102300.
Open this publication in new window or tab >>Nursing as a balancing act in allogeneic hematopoietic cell transplantation: Nurses' experiences through participation in workshops
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2023 (English)In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 63, p. 102300-, article id 102300Article in journal (Refereed) Published
Abstract [en]

PURPOSE: Registered nurses have a key role in supporting patients during the trajectory of allogeneic hematopoietic cell transplantation (allo-HCT). However, the circumstances for performing nursing are not previously outlined therefore the purpose of this study was to explore the conditions for nursing care in allo-HCT.

METHOD: An explorative design, inspired by Experienced based co-design was used to gather experiences, thoughts and visions of nursing care in allo-HCT by means of workshops. Thematic analysis was applied to analyse the data.

RESULT: An overarching theme that was defined from the data was nursing as a balancing act and illustrating conditions for performing nursing in a highly medical-technical environment. The theme included three sub-themes: Fragmented care vs holistic care outlining how the holistic approach to care disappeared when the care became fragmented; Proximity vs distance illuminating the balance between seeing the patient as an independent person despite illness and the need for support; Teamwork vs stand-alone demonstrating the difficulties inherent in adapting to both teamwork and independence in nursing.

CONCLUSION: This study shows that the conditions for RNs and nursing care in allo-HCT care is to balance tasks and approach towards the patient and themselves. RNs must weigh and balance what is most important in the moment and where something else often has to be put aside. It is difficult for RNs to find the time to plan each patient's care and to support the patient in the way they see as most optimal to prepare for discharge, self-care and rehabilitation.

Keywords
Allogeneic hematopoietic cell transplantation, Holistic nursing, Nursing care, Oncology nursing
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-4773 (URN)10.1016/j.ejon.2023.102300 (DOI)36893569 (PubMedID)
Available from: 2023-04-03 Created: 2023-04-03 Last updated: 2023-05-17Bibliographically approved
Holmberg, K., Bergkvist, K., Adalsteinsdottìr, S., Wengström, Y. & Lundh Hagelin, C. (2023). Prerequisites for performing nursing care within allogenic stem cell transplantation: A challenge!. In: : . Paper presented at 49th Annual Meeting of the EBMT, Paris, Frankrike, 23-25 april 2023.
Open this publication in new window or tab >>Prerequisites for performing nursing care within allogenic stem cell transplantation: A challenge!
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2023 (English)Conference paper, Poster (with or without abstract) (Other academic)
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-5123 (URN)
Conference
49th Annual Meeting of the EBMT, Paris, Frankrike, 23-25 april 2023
Available from: 2024-01-18 Created: 2024-01-18 Last updated: 2024-01-18Bibliographically approved
Kisch, A. M., Bergkvist, K., Adalsteinsdóttir, S., Wendt, C., Alvariza, A. & Winterling, J. (2022). A person-centred intervention remotely targeting family caregivers' support needs in the context of allogeneic hematopoietic stem cell transplantation: A feasibility study. Supportive Care in Cancer, 30(11), 9039-9047
Open this publication in new window or tab >>A person-centred intervention remotely targeting family caregivers' support needs in the context of allogeneic hematopoietic stem cell transplantation: A feasibility study
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2022 (English)In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 30, no 11, p. 9039-9047Article in journal (Refereed) Published
Abstract [en]

PURPOSE: Allogeneic hematopoietic stem cell transplantation (HSCT) is an intensive curative treatment that increases family caregivers' burden. The aim of this study was to explore the feasibility of remotely assessing and addressing family caregivers' support needs in terms of demand and acceptability using the Carer Support Needs Assessment Tool Intervention (CSNAT-I) in the HSCT context.

METHODS: CSNAT-I consists of an evidence-based tool and a five-stage person-centred process. The intervention was performed remotely by two designated nurses from two HSCT centres, one before HSCT and the second 6 weeks after (November 2020 to March 2021). To capture the experiences of using CSNAT-I, interviews were conducted with family caregivers and reflections were gathered from the designated nurses.

RESULTS: Of 34 eligible family caregivers, 27 participated, 70% were partners and the rest children, siblings or other relatives. The main support needs were knowing what to expect in the future and dealing with your feelings and worries. The most frequent support actions according to CSNAT-I were psychological support and medical information. Four categories summarised family caregivers and designated nurses' experiences: CSNAT-I was relevant and became an eye opener; nurses' experiences were important for enabling trustful CSNAT-I conversations; CSNAT-I provided family caregivers with support and a sense of security; and CSNAT-I gave family caregivers insight and enabled change.

CONCLUSION: Both family caregivers and designated nurses experienced that using CSNAT-I in an HSCT context was feasible and had the potential to provide valuable support for most of the participating family caregivers.

Keywords
Allogeneic stem cell transplantation, CSNAT-I, Cancer, Family caregivers, Feasibility
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-4589 (URN)10.1007/s00520-022-07306-w (DOI)35951098 (PubMedID)
Available from: 2022-09-27 Created: 2022-09-27 Last updated: 2022-12-08Bibliographically approved
Ullgren, H., Sharp, L., Fransson, P. & Bergkvist, K. (2022). Exploring health care professionals' perceptions regarding shared clinical decision-making in both acute and palliative cancer care. International Journal of Environmental Research and Public Health, 19(23), Article ID 16134.
Open this publication in new window or tab >>Exploring health care professionals' perceptions regarding shared clinical decision-making in both acute and palliative cancer care
2022 (English)In: International Journal of Environmental Research and Public Health, ISSN 1661-7827, E-ISSN 1660-4601, Vol. 19, no 23, article id 16134Article in journal (Refereed) Published
Abstract [en]

Developments in cancer care have resulted in improved survival and quality of life. Integration of acute and palliative cancer care is desirable, but not always achieved. Fragmented care is associated with sub-optimal communication and collaboration, resulting in unnecessary care transitions. The aim of this study was to explore how health care professionals, from both acute and palliative care, perceive clinical decision-making when caring for patients undergoing active cancer treatment in parallel with specialized palliative care at home.

METHODS: Qualitative explorative design, using online focus-group interviews, based on patient-cases, among health care professionals (physicians and nurses) and Framework Analysis.

RESULTS: Six online focus-group interviews were performed. Few signs of systematic integration were found, risking fragmented care, and putting the patients in a vulnerable situation. Different aspects of uncertainty related to mandates and goals-of-care impacted clinical decision-making. Organizational factors appeared to hinder mutual clinical decision-making as well as the uncertainty related to responsibilities. These uncertainties seemed to be a barrier to timely end-of-life conversations and clinical decisions on optimal care, for example, the appropriateness of transfer to acute care.

CONCLUSIONS: Lack of integration between acute and palliative care have negative consequences for patients (fragmented care), health care professionals (ethical stress), and the health care system (inadequate use of resources).

Keywords
Cancer care, Clinical decision-making, Clinical research home care, Focus groups, Palliative care
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-4680 (URN)10.3390/ijerph192316134 (DOI)36498204 (PubMedID)
Available from: 2022-12-14 Created: 2022-12-14 Last updated: 2022-12-14Bibliographically approved
Westman, B., Bergenmar, M., Sharp, L. & Bergkvist, K. (2022). Patienters erfarenheter av delaktighet i cancervården. In: : . Paper presented at Onkologidagarna, Uppsala, 22-24 mars 2022.
Open this publication in new window or tab >>Patienters erfarenheter av delaktighet i cancervården
2022 (Swedish)Conference paper, Oral presentation only (Other academic)
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-4520 (URN)
Conference
Onkologidagarna, Uppsala, 22-24 mars 2022
Available from: 2022-06-22 Created: 2022-06-22 Last updated: 2022-06-22Bibliographically approved
Westman, B., Sharp, L., Bergkvist, K. & Bergenmar, M. (2022). Patienters erfarenheter av delaktighet i cancervården. In: : . Paper presented at Sjuksköterskedagarna, Stockholm, 3-4 oktober 2022.
Open this publication in new window or tab >>Patienters erfarenheter av delaktighet i cancervården
2022 (Swedish)Conference paper, Poster (with or without abstract) (Other academic)
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-4620 (URN)
Conference
Sjuksköterskedagarna, Stockholm, 3-4 oktober 2022
Available from: 2022-10-14 Created: 2022-10-14 Last updated: 2022-10-14Bibliographically approved
Westman, B., Bergkvist, K., Sharp, L. & Bergenmar, M. (2022). Patients and contact nurses (CN) views on opportunities for patient participation in cancer care: An on-going study. In: : . Paper presented at ESMO Congress, Paris, Frankrike, 9-13 september 2022.
Open this publication in new window or tab >>Patients and contact nurses (CN) views on opportunities for patient participation in cancer care: An on-going study
2022 (English)Conference paper, Poster (with or without abstract) (Other academic)
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-4718 (URN)
Conference
ESMO Congress, Paris, Frankrike, 9-13 september 2022
Available from: 2023-01-18 Created: 2023-01-18 Last updated: 2023-01-18Bibliographically approved
Westman, B., Bergkvist, K., Karlsson Rosenblad, A., Sharp, L. & Bergenmar, M. (2022). Patients with low activation level report limited possibilities to participate in cancer care. Health Expectations, 25(3), 914-924
Open this publication in new window or tab >>Patients with low activation level report limited possibilities to participate in cancer care
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2022 (English)In: Health Expectations, ISSN 1369-6513, E-ISSN 1369-7625, Vol. 25, no 3, p. 914-924Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Cancer care trajectories are often complex, with potent multimodality treatments and multiple interactions with health care providers. Communication and coordination are challenging and the patients' responsibilities to take on more active roles in their own care are increasing.

OBJECTIVE: This study aimed to investigate associations between patient activation level and participation in cancer care, sociodemographic characteristics, clinical data, health-related quality of life (HRQoL) and helpfulness of received information.

METHODS: In this cross-sectional population-based study, patients completed questionnaires on patient activation, perceived participation, HRQoL, helpfulness of received information and sociodemographic characteristics. Responses to the patient activation measures (PAMs) were classified into four levels (higher levels indicating more activation). Data on age, sex and cancer diagnosis were collected from the Swedish Cancer Register.

RESULTS: Data from 682 patients were analysed. On comparing patients at PAM levels 1 and 4, the latter reported significantly higher possibilities to influence care decisions (46.6% vs. 20.8%) and to ask questions regarding treatment and care (93.4% vs. 68.4%). Patients at PAM level 4 reported wanting to influence decision-making to a higher extent, compared with patients at other PAM levels, and reported clinically significantly higher HRQoL. No significant differences were found regarding sociodemographic characteristics.

CONCLUSION: We found strong associations between perceived patient participation and activation levels, with limited possibility for participation among those with lower activation levels.

PATIENT OR PUBLIC CONTRIBUTION: Discussions with patient representatives have raised the importance of participation. The preliminary findings were presented and discussed in a workshop with representatives from 21 cancer patient advocacy groups.

Keywords
Cancer, Patient activation, Patient participation, Person-centred care, Population-based study
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-4347 (URN)10.1111/hex.13438 (DOI)35049103 (PubMedID)
Available from: 2022-03-09 Created: 2022-03-09 Last updated: 2022-06-01Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-6331-8599

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