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  • 1.
    Holm, Maja
    et al.
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Department of Nursing Sciences Sophiahemmet University Stockholm Sweden;Department of Health Care Sciences Palliative Research Centre, Marie Cederschiöld University Stockholm Sweden.
    Lundberg, Tina
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Lövgren, Malin
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Advanced Pediatric Home Care, Karolinska University Hospital, Stockholm, Sweden.
    Ljungman, Lisa
    Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden.
    Parenting a child with cancer and maintaining a healthy couple relationship: Findings from the Family Talk Intervention2024Ingår i: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 71, nr 1Artikel i tidskrift (Refereegranskat)
    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.

  • 2.
    Holm, Maja
    et al.
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Sophiahemmet högskola, Stockholm.
    Lövgren, Malin
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Karolinska universitetssjukhuset.
    Alvariza, Anette
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Stockholms sjukhem.
    Eklund, Rakel
    Uppsala universitet.
    Kreicbergs, Ulrika
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Karolinska institutet.
    Experiences of being a severely ill parent of dependent children receiving care at home: Hopes and challenges2024Ingår i: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 22, nr 1, s. 169-173Artikel i tidskrift (Refereegranskat)
    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.

  • 3.
    Bockgård, Gustav
    et al.
    Department of Scandinavian Languages, Uppsala University, Uppsala.
    Mattsson, Elisabet
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap. Department of Women’s and Children’s Health, Healthcare Sciences and e-Health, Uppsala University, Uppsala.
    von Essen, Louise
    Department of Women’s and Children’s Health, Healthcare Sciences and e-Health, Uppsala University, Uppsala.
    Klarare, Anna
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Department of Women’s and Children’s Health, Healthcare Sciences and e-Health, Uppsala University, Uppsala.
    Collaborative Interpretation of Researcher-Generated Photo-Elicitation Findings: Insights From Women With Lived Experience of Homelessness2024Ingår i: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Interviews with individuals experiencing homelessness can be challenging for various reasons, including mental and physical health issues, substance use, and negative experiences with authority figures. Researchers have used photos to facilitate communication and empower participants during data collection. We analyzed data from a previous study to explore the use of researcher-generated photos during interviews about health with 13 women experiencing homelessness. Conversation analysis revealed clear patterns regarding the use of the photos during the interviews. The photos were referred to 118 times over the total interview length, 6 hours and 23 minutes, with the interviewer making 62% of the referrals and the women accounting for 38%. Fifty-nine percent of the referrals occurred within the first 5 minutes of the interviews. The women used the photos to trigger associations and emotions, to describe photo content, or in a minor role during the interview. Interpretations from an advisory board of six women with lived experiences of homelessness suggested that the photos did not engage participants as intended, highlighting the importance of considering participants’ perspectives when designing photo-elicitation methods. The feedback also provided valuable insights into interview locations and incentives in research that may have influenced the women’s willingness to use the photos. This study emphasizes the importance of understanding the complexity of choosing researcher-generated photos in interviews with underserved, hard-to-reach populations.

  • 4.
    Ayoub, Maria
    et al.
    School of Health and Welfare, Dalarna University, Falun.
    Udo, Camilla
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. School of Health and Welfare, Dalarna University, Falun; Center for Clinical Research Dalarna, Uppsala University, Falun.
    Årestedt, Kristofer
    Department of Health and Caring Sciences, Faculty of Health and Life Science, Linnaeus University, Växjö.
    Kreicbergs, Ulrika
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Department of Women’s and Children’s Health, Childhood Cancer Research Unit, Karolinska Institute, Solna; Louis Dundas Center, Great Ormond Street Institute of Child Health, University College London, London, UK.
    Lövgren, Malin
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Advanced Pediatric Home Care, Astrid Lindgren Children’s Hospital, Karolinska University Hospital.
    The Family Talk Intervention in Pediatric Oncology: Potential Effects Reported by Parents2024Ingår i: Children, E-ISSN 2227-9067, Vol. 11, nr 1, artikel-id 95Artikel i tidskrift (Refereegranskat)
    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.

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  • 5.
    Oelschlägel, Lina
    et al.
    Lovisenberg Diaconal University College, Norway; Department of Public Health Sciences, Institute of Health and Society, Faculty of Medicine, University of Oslo, Oslo, Norway.
    Moen, Anne
    Department of Public Health Sciences, Institute of Health and Society, Faculty of Medicine, University of Oslo, Oslo, Norway.
    Dihle, Alfhild
    Department of Nursing and Health Promotion, Faculty of Health Sciences, OsloMet - Oslo Metropolitan University, Oslo, Norway.
    Christensen, Vivi L.
    Department of Nursing and Health Sciences, Faculty of Health and Social Sciences, University of South-Eastern Norway, Drammen, Norway.
    Heggdal, Kristin
    Faculty of Health Sciences, VID Specialized University, Oslo, Norway.
    Österlind, Jane
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Steindal, Simen A.
    Lovisenberg Diaconal University College, Norway; Faculty of Health Sciences, VID Specialized University, Oslo, Norway.
    Implementation of remote home care: Assessment guided by the RE-AIM framework2024Ingår i: BMC Health Services Research, E-ISSN 1472-6963, Vol. 24, artikel-id 145Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background Welfare technology interventions have become increasingly important in home-based palliative care for facilitating safe, time-efficient, and cost-effective methods to support patients living independently. However, studies evaluating the implementation of welfare technology innovations are scarce, and the empirical evidence for sustainable models using technology in home-based palliative care remains low. This study aimed to report on the use of the Reach Effectiveness Adoption Implementation Maintenance (RE-AIM) framework to assess the implementation of remote home care (RHC) a technology-mediated service for home-living patients in the palliative phase of cancer. Furthermore, it aimed to explore areas of particular importance determining the sustainability of technologies for remote palliative home-based care.

    Methods A secondary analysis of data collected by semi-structured interviews with patients with cancer in the palliative phase, focus groups, and semi-structured interviews with healthcare professionals (HCPs) experienced with RHC was performed. A deductive reflexive thematic analysis using RE-AIM dimensions was conducted.

    Results Five themes illustrating the five RE-AIM dimensions were identified: (1) Reach: protective actions inrecruitment - gatekeeping, (2) Effectiveness: potential to offer person-centered care, (3) Adoption: balancing high touch with high tech, (4) Implementation: moving towards a common understanding, and (5) Maintenance: adjusting to what really matters. The RE-AIM framework highlighted that RHC implementation for patients in the palliative phase of cancer was influenced by HCP gatekeeping behavior, concerns regarding abandoning palliative care as a high-touch specialty, and a lack of competence in palliative care. Although RHC facilitated improved routines in patients’ daily lives, it was perceived as a static service unable to keep pace with disease progression.

    Conclusions A person-centered approach that prioritizes individual needs and preferences is necessary for providing optimal care. Although technologies such as RHC are not a panacea, they can be integrated as support for increasingly strained health services.

    Ladda ner fulltext (pdf)
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  • 6.
    Häger Tibell, Louise
    et al.
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Tema Cancer, BES: Breast-Endocrine Tumours and Sarcoma, Karolinska University Hospital, Stockholm, Sweden.
    Årestedt, Kristofer
    Faculty of Health and Life Sciences, Linnaeus University, Kalmar, Sweden; Department of Research, Region Kalmar County, Kalmar, Sweden.
    Holm, Maja
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Department of Nursing Science, Sophiahemmet University, Stockholm, Sweden.
    Wallin, Viktoria
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Steineck, Gunnar
    Department of Clinical Cancer Epidemiology, Karolinska Institutet, Stockholm, Sweden; Division of Clinical Cancer Epidemiology, Sahlgrenska University Hospital, Gothenburg, Sweden.
    Hudson, Peter
    Centre for Palliative Care, St Vincent´s Hospital and The University of Melbourne, Melbourne, Australia; Vrije University Brussels, Brussels, Belgium.
    Kreicbergs, Ulrika
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
    Alvariza, Anette
    Research and Development-Unit/Palliative Care, Stockholms Sjukhem, Stockholm, Sweden.
    Preparedness for caregiving and preparedness for death: Associations and modifiable thereafter factors among family caregivers of patients with advanced cancer in specialized home care2024Ingår i: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 48, nr 4, s. 407-416Artikel i tidskrift (Refereegranskat)
    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. 

  • 7.
    Karlsson Rosenblad, Andreas
    et al.
    Department of Statistics, Uppsala University; Department of Statistics, Uppsala University, Akademiska sjukhuset; Department of Neurobiology, Care Sciences and Society, Division of Family Medicine and Primary Care, Karolinska Institutet.
    Klarare, Anna
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Department of Women’s and Children’s Health, Healthcare Services and e-Health, Uppsala University, Akademiska sjukhuset.
    Rapaport, Penny
    Division of Psychiatry, Faculty of Brain Sciences, University College London, UK.
    Mattsson, Elisabet
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap. Department of Women’s and Children’s Health, Healthcare Services and e-Health, Uppsala University, Akademiska sjukhuset.
    Gaber, Sophie Nadia
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap. Department of Women’s and Children’s Health, Healthcare Services and e-Health, Uppsala University, Akademiska sjukhuset.
    Health literacy and its association with mental and spiritual well-being among women experiencing homelessness2024Ingår i: Health Promotion International, ISSN 0957-4824, E-ISSN 1460-2245, Vol. 39, nr 2Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Low health literacy (HL) has been linked to low self-rated health, reduced efficacy of behaviour change, and challenges in preventing, treating, or managing health conditions. People experiencing homelessness are at risk of poor HL; however, few studies have investigated HL in relation to mental and spiritual well-being among people experiencing homelessness in general, or women experiencing homelessness specifically. This cross-sectional study of 46 women experiencing homelessness in Stockholm, Sweden, recruited during the period October 2019–December 2020, aimed to examine how HL was associated with mental and spiritual well-being among women experiencing homelessness. Participants answered questions about socio-demographic characteristics (age, length of homelessness, education) and digital technology (mobile phone/the Internet) use, in addition to Swedish language versions of three questionnaires administered through structured, face-to-face interviews: the Communicative and Critical Health Literacy Scale, the General Health Questionnaire 12 and the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being. Data were analysed using linear regression, which revealed statistically significant associations between HL and mental well-being (p = .009), and between HL and spiritual well-being (p = .022). However, neither socio-demographic characteristics nor digital technology use were significantly associated with HL. In conclusion, promoting HL may improve mental and spiritual well-being in this vulnerable population. An advisory board of women with lived experiences of homelessness (n = 5) supported the interpretation of the findings and emphasised the need to consider HL in relation to basic needs such as ‘housing first’. Moreover, health information and services should be accessible to people with different degrees of HL.

  • 8.
    Eriksson, Linda Victoria
    et al.
    Karolinska institutet; Karolinska universitetssjukhuset.
    Holmberg, Katarina
    Karolinska institutet; Sophiahemmet högskola.
    Lundh Hagelin, Carina
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Karolinska institutet.
    Wengström, Yvonne
    Karolinska institutet; Karolinska universitetssjukhuset.
    Bergkvist, Karin
    Karolinska institutet; Sophiahemmet högskola.
    Winterling, Jeanette
    Karolinska institutet; Karolinska universitetssjukhuset.
    Symptom Burden and Recovery in the First Year After Allogeneic Hematopoietic Stem Cell Transplantation2023Ingår i: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 46, nr 1, s. 77-85Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: Patients are affected by various symptoms after allogeneic hematopoietic stem cell transplantation (allo-HSCT) that can affect recovery. Research has mainly focused on symptom occurrence; thus, little is known about patients' overall symptom burden.

    OBJECTIVE: The aim of this study was to examine patient-reported symptom burden in the first year after allo-HSCT and whether a high symptom burden 4 months after allo-HSCT predicts recovery, that is, general health and sick leave, 1 year after transplantation.

    METHODS: Allo-HSCT patients aged 18 to 65 years were included (n = 189). Questionnaire data were collected on admission to the allo-HSCT unit, as well as 4 and 7 months and 1 year after allo-HSCT. Logistic regression evaluated relationships between demographic characteristics, chronic graft-versus-host disease, physical activity, and a high symptom burden.

    RESULTS: Tiredness, susceptibility to infection, disinterest in sex, and physical weakness remained the most frequent symptoms, while distressing symptoms varied during the first year after allo-HSCT.Poor general health 1 year after allo-HSCT was associated with older age, low physical activity, and a high symptom burden 4 months after allo-HSCT. Full-time sick leave 1 year after allo-HSCT was associated with chronic graft-versus-host disease, low physical activity, and a high symptom burden 4 months after transplantation.

    CONCLUSIONS: Experiencing a high symptom burden 4 months after allo-HSCT can affect recovery 1 year after transplantation. Furthermore, low physical activity 4 months after allo-HSCT can predict both general health and sick leave 1 year after transplantation.

    IMPLICATIONS FOR PRACTICE: Repeated symptom assessment, including experienced distress, is central for reducing overall symptom burden and supporting recovery after allo-HSCT.

  • 9.
    Mattsson, Elisabet
    et al.
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap.
    Klarare, Anna
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Kvinnor far illa inom ramen för samhällets institutioner2023Ingår i: Dagens arena, nr 2023-04-14, s. 1Artikel i tidskrift (Övrig (populärvetenskap, debatt, mm))
    Abstract [sv]

    Vårdprogram, journalsystem och arbetsrutiner bör ändras för att öka säkerheten för kvinnor med skyddade personuppgifter. 

  • 10.
    Agius, Josefine
    et al.
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap.
    Klarare, Anna
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Mattsson, Elisabet
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap.
    Vamstad, Johan
    Marie Cederschiöld högskola, Institutionen för civilsamhälle och religion, Centrum för civilsamhällesforskning.
    Eriksson Lundström, Jenny
    Uppsala universitet.
    Vahlman, Sanna
    Ersta möjlighet, Stockholm.
    Vilket stöd våldsutsatta får blir ett lotteri: Ge kommuner ett särskilt bostadsförsörjningskrav för våldsutsatta2023Ingår i: Dagens Samhälle, artikel-id 2023-06-08Artikel i tidskrift (Övrig (populärvetenskap, debatt, mm))
    Abstract [sv]

    Inrätta en nationell handlingsplan som säkerställer skydd, stöd och stadigvarande boende för våldsutsatta oavsett kommun, föreslår forskare i ett projekt om kvinnor i hemlöshet.

  • 11.
    Godskesen, Tove
    et al.
    Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Uppsala universitet.
    Frygner Holm, Sara
    Uppsala universitet.
    Höglund, Anna T.
    Uppsala universitet.
    Eriksson, Stefan
    Uppsala universitet.
    YouTube as a source of information on clinical trials for paediatric cancer2023Ingår i: Information, Communication and Society, ISSN 1369-118X, E-ISSN 1468-4462, Vol. 26, nr 4, s. 716-729Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Little is known about the information parents of children with cancer find when searching for clinical trials information on YouTube. Thus, this study aimed to analyse the content, quality and reliability of YouTube videos focused on clinical trials for paediatric cancer. A descriptive cross-sectional design was used, and YouTube was searched using the phrases ‘clinical trials for children with cancer’ and ‘paediatric cancer clinical trials’. Videos that met inclusion criteria were assessed using the instruments Global Quality Scale and DISCERN. About half of the examined videos were in the GQS excellent-quality group and exhibited a total of 84,804 views. The mean time for videos was 5.7 minutes, they originated from the US or UK, were uploaded after 2016, and had a cancer centre/foundation or children hospital as video source. Half of them were focusing on early experimental trials and had a positive tone. Twenty percent were classified as useful without serious shortcomings, almost 50% as misleading with serious shortcomings, and 30% as inappropriate sources of information. In conclusion, most YouTube videos on paediatric cancer trials are not very informative and fall short of what could ethically be required regarding their facilitation of informed decision-making.

  • 12.
    Doveson, Sandra E.
    et al.
    Karolinska institutet.
    Holm, Maja
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Sophiahemmet högskola.
    Fransson, Per
    Umeå universitet; Norrlands universitetssjukhus.
    Wennman-Larsen, Agneta
    Karolinska institutet; Sophiahemmet högskola.
    Identification of early symptoms and changes in QoL and functioning among men with primary localized prostate cancer who later develop metastases: A matched, prospective study2023Ingår i: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 21, nr 2, s. 230-238Artikel i tidskrift (Refereegranskat)
    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.

  • 13.
    Holmberg, Katarina
    et al.
    Karolinska Institutet; Sophiahemmet högskola.
    Bergkvist, Karin
    Karolinska Institutet; Sophiahemmet högskola.
    Adalsteinsdóttir, Solveig
    Karolinska universitetssjukhuset.
    Wengström, Yvonne
    Karolinska Institutet; Karolinska universitetssjukhuset.
    Lundh Hagelin, Carina
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Karolinska Institutet.
    Nursing as a balancing act in allogeneic hematopoietic cell transplantation: Nurses' experiences through participation in workshops2023Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 63, artikel-id 102300Artikel i tidskrift (Refereegranskat)
    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.

  • 14.
    Norinder, Maria
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    A person-centred approach to support family caregivers in specialised home care: The Carer Support Needs Assessment Tool Intervention2023Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
    Abstract [en]

    Family caregivers are crucial providers of support and care for patients with lifethreatening illness and many report unmet support needs. With the use of quantitative and qualitative methods this thesis aimed to evaluate the Carer Support Needs Assessment Tool (CSNAT) and explore experiences and potential effects of utilising the Carer Support Needs Assessment Tool Intervention (CSNAT-I) among family caregivers and registered nurses in the context of specialised home care. The results showed that the CSNAT tool was valid and reliable for use among family caregivers in specialised home care (I). Family caregivers reported most the need for additional support concerning “Knowing what to expect in the future” (I, II). They reported and described how higher levels of need for more support were associated with poorer quality of life (II). The intervention was effective in significantly increasing family caregivers’ preparedness for caregiving (p = 0.002) (IV). Participating nurses expressed that their everyday clinical practice changed while learning to use the CSNAT-I and they experienced professional and personal growth (III). Their assessments and supportive inputs shifted from reactive towards proactive and more in collaboration with family caregivers. When utilizing the CSNAT-I, family caregivers experienced their conversations with nurses as co-created, providing new perspectives and insights which increased their involvement and helped in finding solutions (V).

    In conclusion, this thesis gives further weight to the importance of addressing family caregivers' support needs as a part of nursing.

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  • 15.
    Högberg, Cecilia
    et al.
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Wallin, Viktoria
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Kreicbergs, Ulrika
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Great Ormond Street Institute of Child health, University College London, United Kingdom.
    Alvariza, Anette
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Stockholms sjukhem; Palliativt kunskapscentrum.
    Närståendes erfarenheter av webbaserat stöd under pågående specialiserad hemsjukvård: ’Närstående.se’2023Konferensbidrag (Refereegranskat)
    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.

  • 16.
    Schenell, Ramona
    et al.
    The Sahlgrenska Academy, Institute of health and care sciences, University of Gothenburg; Administration for the elderly, nursing and care, Department of Quality and development, The City of Gothenburg.
    Österlind, Jane
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Browall, Maria
    Faculty of caring sciences, work life and social welfare, department of caring sciences, University of Borås; Dep of Oncology, Inst of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg.
    Melin-Johansson, Christina
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Department of Health Care Sciences/Nursing Sciences, Mid Sweden University, Östersund.
    Lundh Hagelin, Carina
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet.
    Hjorth, Elin
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Teaching to prepare undergraduate nursing students for palliative care: Nurse educators’ perspectives2023Ingår i: BMC Nursing, ISSN 1472-6955, E-ISSN 1472-6955, ISSN 1472-6955, Vol. 22, artikel-id 338Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background Education in palliative care for undergraduate nursing students is important for the competence of general nurses. Newly graduated nurses have reported challenges in coping with their own emotions when encountering dying persons. They express a wish for more education before they graduate, particularly in psychosocial and existential areas, such as having difficult conversations and supporting grieving persons. Despite awareness of the importance of palliative care education for nurses, there is a lack of knowledge on how to effectively convey this knowledge to students. The aim of the present study was to explore how teaching to prepare undergraduate nursing students for palliative care practice is conducted in Sweden.

    Methods Educators from 22 Bachelor of Science nursing programmes in Sweden were interviewed about how they conducted palliative care education, with a focus on teaching situations that have been successful or less successful. The interviews were transcribed and analysed using qualitative inductive content analysis.

    Results Educators described that they play a crucial role in preparing undergraduate nursing students to face death and dying and to care for persons at the end of life. In the main theme, “Transforming person-centred palliative care into student-centred education”, educators described how they incorporated the person-centred palliative approach into their teaching. Educators used a dynamic style of teaching where they let the students’ stories form the basis in a co-constructed learning process. The educators trusted the students to be active partners in their own learning but at the same time they were prepared to use their expert knowledge and guide the students when necessary. Discussion and reflection in small groups was described as being essential for the students to achieve a deeper understanding of palliative care and to process personal emotions related to encountering dying and grieving individuals.

    Conclusions This study suggests that palliative care education for undergraduate nursing students benefits from teaching in smaller groups with room for discussion and reflection. Furthermore, gains are described relating to educators taking the role of facilitators rather than traditional lecturers, being flexible and ready to address students’ emotions. Educators also draw on their experiences as palliative care nurses in their teaching practices.

  • 17.
    Granrud, Marie
    et al.
    Department of Social Sciences and Guidance, Faculty of Health and Social Sciences, Inland Norway University of Applied Sciences, Elverum, Norway.
    Grøndahl, Vigdis Abrahamsen
    Department of Nursing, Health and Laboratory Science, Faculty of Health, Welfare and Organization, Østfold University College, Halden, Norway.
    Helgesen, Ann Karin
    Department of Nursing, Health and Laboratory Science, Faculty of Health, Welfare and Organization, Østfold University College, Halden, Norway.
    Bååth, Carina
    Department of Nursing, Health and Laboratory Science, Faculty of Health, Welfare and Organization, Østfold University College, Halden, Norway; Department of Health Sciences, Faculty of Health Science and Technology, Karlstad University.
    Olsson, Cecilia
    Department of Health Sciences, Faculty of Health Science and Technology, Karlstad University; Department of Bachelor Education in Nursing, Lovisenberg Diaconal University College, Oslo, Norway.
    Tillfors, Maria
    Department of Social and Psychological Sciences, Faculty of Arts and Social Sciences, Karlstad University.
    Melin-Johansson, Christina
    Department of Health Sciences, Mid Sweden University, Östersund.
    Österlind, Jane
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Larsson, Maria
    Department of Health Sciences, Faculty of Health Science and Technology, Karlstad University.
    Hov, Reidun
    Centre of Development of Institutional and Home Care Services, Innland (Hedmark), Hamar Municipality, Norway.
    Sandsdalen, Tuva
    Department of Health and Nursing Sciences, Faculty of Health and Social Sciences, Inland Norway University of Applied Sciences, Elverum, Norway.
    Health Care Personnel’s Perspectives on Quality of Palliative Care During the COVID-19 Pandemic: A Cross-Sectional Study2023Ingår i: Journal of Multidisciplinary Healthcare, ISSN 1178-2390, E-ISSN 1178-2390, Vol. 16, s. 2893-2903Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: The provision of high-quality palliative care is challenging, especially during a pandemic like COVID-19. The latter entailed major consequences for health care systems and health care personnel (HCP) in both specialist and community health care services, in Norway and worldwide. The aim of this study was to explore how the HCP perceived the quality of palliative care in nursing homes, medical care units, and intensive care units during the COVID-19 pandemic.

    Methods: This study had a cross-sectional design. A total of 290 HCP from Norway participated in the study (RR = 25.8%) between October and December 2021. The questionnaire comprised items concerning respondents’ demographics and quality of care, the latter measured by the short form of the Quality from the Patient’s Perspective—Palliative Care instrument, adapted for HCP. The STROBE checklist was used.

    Results: This study shows that the HCP scored subjective importance as higher in all dimensions, items and single items than their perception of the actual care received. This could indicate a need for improvement in all areas. Information about medication, opportunity to participate in decisions about medical and nursing care and continuity regarding receiving help from the same physician and nurse are examples of areas for improvement.

    Conclusion: Study results indicate that HCP from nursing homes, medical care units, and intensive care units perceived that quality of palliative care provided was not in line with what they perceived to be important for the patient. This indicate that it was challenging to provide high-quality palliative care during the COVID-19 pandemic.

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  • 18.
    Gabrielsson, Hanna
    et al.
    Röda Korsets Högskola, Hälsovetenskapliga institutionen.
    Hjorth, Elin
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap.
    Wallin, Viktoria
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Pohlkamp, Lilian
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap.
    Övergången från att vara patient med cancer till person med erfarenhet av cancer: Civilsamhällets roll i rehabilitering2023Ingår i: Socialmedicinsk Tidskrift, ISSN 0037-833X, Vol. 100, nr 1, s. 165-178Artikel, forskningsöversikt (Refereegranskat)
    Abstract [sv]

    En avslutad cancerbehandling innebär inte automatiskt ett avslut på de utmaningar som följer med cancer. Behovet av cancerrehabilitering ökar i takt med fler som överlever cancer. Det råder viss otydlighet kring vilka rehabiliteringsinsatser som efterfrågas och vilka aktörer som erbjuder dessa. Denna studie har genom en litteraturöversikt satt ljuset på deltagares erfarenheter av cancerrehabilitering samt civilsamhällets roll i rehabilitering efter genomgången cancer i de nordiska länderna. Resultatet av litteraturöversikten visar att få studier finns publicerade om civilsamhällets roll i cancerrehabilitering. Personer som har genomgått en cancersjukdom har ofta behov av stöd under sin rehabilitering, där stöd från personer i liknande situation uppskattas av många. Resultatet visar även att organisationer i civilsamhället spelar en betydande roll. Studien har genomförts vid Centrum för civilsamhällesforskning, Marie Cederschiöld Högskola.

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  • 19.
    O'Sullivan, Anna
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Undocumented migrants’ access to healthcare in Sweden, and the impact of Act 2013:4072023Ingår i: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background Research shows that undocumented migrants have difficulties in accessing healthcare. Act 2013:407 came into force in 2013 and entitled undocumented migrants to healthcare that cannot be deferred. To date, studies about undocumented migrants’ access to care in Sweden and the impact of Act 2013:407 are sparse. Hence, the aim of this study was to describe professionals’ experiences of access to healthcare for undocumented migrants in Sweden and the impact of Act 2013:407.

    Methods A qualitative design with semi-structured interviews was employed. Nine interviews were carried out in 2015 with nurses at two NGO healthcare centres for undocumented migrants – and an additional seven interviews in 2022 with staff at an NGO healthcare centre for undocumented migrants and personnel at a regional health and medical care administration. Interpretive description was used for the analyses.

    Ethical considerations Permission to carry out the study was obtained from managers at the participating NGOs and the regional health and medical care administration. Participants received verbal and written information about the study, and informed consent was obtained from all participants.

    Findings Six categories emerged from the analysis: Changes since the Act was introduced, General problems with healthcare access, Care for undocumented migrants – politics and social economy, Lack of knowledge, ‘Healthcare that cannot be deferred’ and Being an undocumented migrant.

    Conclusion Undocumented migrants’ social needs are as great as their needs for healthcare. Healthcare staff are burdened with healthcare cost considerations which affect their judgement of care provision and prioritization. Healthcare staff attitudes towards undocumented migrants affect their access to healthcare. Undocumented migrants in need of healthcare are especially vulnerable due to their legal status, being ill and the fear of being reported and deported. To assure undocumented migrants’ access to healthcare and maintain healthcare ethics, the only possible solution is to provide healthcare based on needs.

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  • 20.
    Norinder, Maria
    et al.
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Capio Palliative Care, Dalen Hospital, Stockholm.
    Årestedt, Kristofer
    Faculty of Health and Life Sciences, Linnaeus University, Kalmar; Department of Research, Region Kalmar County.
    Axelsson, Lena
    Department of Nursing Science, Sophiahemmet University, Stockholm.
    Grande, Gunn
    Division of Nursing, Midwifery & Social Care, Faculty of Biology, Medicine and Health, University of Manchester, United Kingdom.
    Ewing, Gail
    Centre for Family Research, University of Cambridge, United Kingdom.
    Alvariza, Anette
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Research and Development Unit/Palliative Care, Stockholms Sjukhem, Stockholm.
    Increased preparedness for caregiving among family caregivers in specialized home care by using the Carer Support Needs Assessment Tool Intervention2023Ingår i: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, s. 1-7Artikel i tidskrift (Refereegranskat)
    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.

  • 21.
    Oelschlägel, Lina
    et al.
    Lovisenberg Diaconal University College, Norway; University of Oslo, Norway.
    Christensen, Vivi L.
    University of South-Eastern Norway, Norway.
    Moen, Anne
    University of Oslo, Norway.
    Heggdal, Kristin
    VID Specialized University, Norway.
    Österlind, Jane
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Dihle, Alfhild
    Oslo Metropolitan University, Norway.
    Steindal, Simen A.
    VID Specialized University, Norway; Lovisenberg Diaconal University College, Norway.
    Patients' experiences with a welfare technology application for remote home care: A longitudinal study2023Ingår i: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 32, nr 17-18, s. 6545-6558Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Aims  and  Objectives: To explore the longitudinal experiences using an application named remote home care for remote palliative care among patients with cancer living at home.

    Background: Introducing welfare technology in home- based care for patients with cancer in the palliative phase is internationally suggested as a measure to remotely support palliative care needs. However, little is known about the experiences of patients utilising welfare technology applications to receive home-based care from healthcare professionals in a community care context. Although living with cancer in the palliative phase often presents rapidly changing ailments, emotions and chal-lenges with patients' needs changing accordingly, no studies exploring the longitudinal experiences of patients were found.

    Design: A qualitative study with a longitudinal, exploratory design.

    Methods: Data were collected through individual interviews with 11 patients over 16 weeks. The data were analysed using qualitative content analysis. The COREQ checklist guided the reporting of the study.

    Results: Three themes were identified: (1) potential to facilitate self- governance of life-limiting illness in daily life, (2) need for interpersonal relationships and connections, and (3) experiences of increased responsibility and unclear utility of the Remote Home Care.

    Conclusion: The results showed that remote home care facilitated patients' daily routines, symptom control and improved illness- management at home. Interpersonal relationships with healthcare professionals were considered pivotal for satisfactory follow-up. Infrastructural glitches regarding data access, information sharing and lack of continuous adjustments of the application represented major challenges, with the potential to impose a burden on patients with cancer in the palliative phase.

    Relevance to Clinical Practice: By exploring the experiences of patients in palliative care over time as the disease progresses, this study provides constructive insights for the design and development of welfare technology applications and optimal care strategies.

    Patient or Public Contribution: The remote home care was developed by interdisciplinary healthcare professionals.

  • 22.
    Norinder, Maria
    et al.
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Capio Palliative Care, Dalen Hospital, 121 87, Stockholm, Sweden.
    Axelsson, Lena
    Department of Nursing Science, Sophiahemmet University, Stockholm.
    Årestedt, Kristofer
    Faculty of Health and Life Sciences, Linnaeus University, Kalmar; Department of Research, Region Kalmar County, Kalmar.
    Grande, Gunn
    Division of Nursing, Midwifery & Social Care, Faculty of Biology, Medicine and Health, University of Manchester, Manchester, United Kingdom.
    Ewing, Gail
    Centre for Family Research, University of Cambridge, Cambridge, United Kingdom.
    Alvariza, Anette
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Department of Research and Development / Palliative Care, Stockholms Sjukhem.
    Family caregivers’ experiences of discussing their needs with a nurse during specialised home care utilizing the carer support needs assessment tool intervention: A qualitative study2023Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 66, artikel-id 102412Artikel i tidskrift (Refereegranskat)
    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.

  • 23.
    Bergstrand, Renée
    et al.
    Äldre samt vård- och omsorgsförvaltningen, Göteborgs stad.
    Goliath, Ida
    Stiftelsen Stockholms läns Äldrecentrum; Karolinska Institutet.
    Olsson, Åsa
    Enskede Årsta Vantör sdf/Sthlms stad; Karolinska Institutet.
    Österlind, Jane
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    AKADEMISKT SÄBO2023Konferensbidrag (Övrigt vetenskapligt)
    Abstract [sv]

    I den här sessionen presenterar vi akademisk SÄBO ur olika perspektiv. Vi kommer att berätta om: (x) samskapande, utveckling och uppbyggnad av akademisk SÄBO(x) att vara kommundoktorand och vägen dit. Vi kommer även att berätta om (x) att vara forskare på SÄBO och om (x) samverkan mellan forskning, utveckling och utbildning. I sessionen knyter vi an till palliativ vård genom våra olika exempel. Bland annat kommer vi att beskriva SÄBO som arena för utveckling, följeforskning och deltagarbaserad forskning.samt SÄBO som arena för strukturerade förbättringsarbeten och ett doktorandprojekt om förberedande samtal om livet och döden på SÄBO tillsammans med personal och chefer på SÄBO i Stockholm

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  • 24.
    Skedsmo, Karoline
    et al.
    Lovisenberg Diaconal University College, Oslo, Norway.
    Bingen, Hanne Maria
    Lovisenberg Diaconal University College, Oslo, Norway.
    Hofsø, Kristin
    Lovisenberg Diaconal University College, Oslo, Norway; Department of Postoperative and Intensive Care Nursing, Division of Emergencies and Critical Care, Oslo, University Hospital, Oslo, Norway.
    Steindal, Simen A.
    Institute of nursing, Faculty of Health Studies, VID Specialized University, Oslo, Norway; Lovisenberg Diaconal University College, Oslo, Norway.
    Lundh Hagelin, Carina
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institute.
    Hilderson, Deborah
    Karel de Grote University College, Antwerpen, Belgium.
    Nes, Andréa Aparecida Gonçalves
    Lovisenberg Diaconal University College, Oslo, Norway.
    Smis, Dieter
    GZA hospitals, Antwerp, Belgium.
    Stenseth, Hege Vistven
    Lovisenberg Diaconal University College, Oslo, Norway.
    Olaussen, Camilla
    Lovisenberg Diaconal University College, Oslo, Norway.
    Postgraduate nursing students’ experiences with simulation-based learning in palliative care education: A qualitative study2023Ingår i: Nurse Education in Practice, ISSN 1471-5953, E-ISSN 1873-5223, Vol. 73, artikel-id 103832Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Aim: The aim of this study was to explore postgraduate palliative care nursing students' experiences with simulation-based learning focusing on communication skills, as a learning method in palliative care education.

    Background: Communication is one of several important competencies in palliative care and found to be challenging. Developing appropriate communication skills in palliative care requires education and practice. To provide postgraduate palliative care nursing students with the required knowledge and experience, practical and active learning approaches, such as simulation-based learning, can be applied. Several studies have explored undergraduate nursing students' experiences with simulation-based learning in palliative care. However, to our knowledge no studies have explored postgraduate palliative care nursing students` experiences with simulation-based learning focusing on communication skills in palliative care education.

    Design: An exploratory descriptive design.

    Methods: A qualitative method was employed. Three focus group interviews were conducted in May 2022 using videoconferencing (Zoom) with 11 postgraduate palliative care nursing students, eight of whom wrote reflective notes. Data were analysed using systematic text condensation.

    Results: Three categories were identified in the data analysis: 1) from uncertain expectations to the real experience of simulation-based learning; 2) being a skilled professional in everyday life versus being observed in the scenarios; and 3) the balance between self-confidence and challenges in experiencing professional development and mastery.

    Conclusions: Postgraduate palliative care nursing students seemed to experience anxiety towards simulation-based learning in palliative care education, as well as variable expectations for the approach. This could be due to their unfamiliarity with the learning method. The need for repetition was underlined and the students indicated that they would like to be able to participate in several simulation sessions to familiarise themselves with the approach. The contrast between being a skilled professional in everyday life and the pressure of being observed and judged in the scenarios was an important finding. Students outlined the desire to feel safe, but also highlighted the importance of being challenged to experience professional development and enhanced mastery. Generally, the findings indicate that academic and psychological safety should be a focus during simulation-based learning and instructors should understand that students may have varied learning strategies, divergent learning experiences and shifting beliefs in their own competencies.

  • 25.
    Lundberg, Tina
    et al.
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Function Area in Social Work and Health, Karolinska University Hospital, Stockholm, Sweden.
    Årestedt, Kristofer
    Faculty of Health and Life Sciences, Linnaeus University, Kalmar, Sweden; Department of Research, Region Kalmar County, Kalmar, Sweden.
    Olsson, Mariann
    Function Area in Social Work and Health, Karolinska University Hospital, Stockholm, Sweden; Department of Neurobiology, Care Sciences and Society/Division of Family Medicine and Primary Care, Karolinska Institutet Huddinge, Stockholm, Sweden; Department of Research and Development/ Palliative Care, Stockholms Sjukhem, Stockholm, Sweden.
    Alvariza, Anette
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Department of Research and Development/ Palliative Care, Stockholms Sjukhem, Stockholm, Sweden.
    Forinder, Ulla
    Department of Social Work and Psychology, Gävle University, Gävle, Sweden.
    Posttraumatic Growth After Struggling With the Loss of a Parent in Young Adulthood2023Ingår i: Omega, ISSN 0030-2228, E-ISSN 1541-3764Artikel i tidskrift (Refereegranskat)
    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.

  • 26.
    Österlind, Jane
    et al.
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Östensson, Ann-Charlotte
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap.
    Bisholt, Birgitta
    Röda korset högskola.
    Pusa, Susanne
    Umeå universitet.
    Melin-Johansson, Christina
    Mittuniversitetet.
    Lundh Hagelin, Carina
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    6 S-modellen för personcentrerad palliativ vård: En undersökning av personalens uppfattningar på vård-och omsorgsboende och i hemtjänst2023Konferensbidrag (Övrigt vetenskapligt)
    Abstract [sv]

    Bakgrund: Palliativ vård innebär en holistisk vård av personer i alla åldrar. Syftet är att lindra lidande av fysisk, psykologisk, social eller existentiell/andlig natur. Döendet och döden är ofta omgärdade av tystnad, både i samhället i stort och bland vårdpersonal. Vårdpersonal kan känna sig obekväma vid tanken på döden. Djupare existentiella frågor undviks ofta genom att äldre personer inom hälso- och sjukvården avleds genom att prata om mer lättsamma samtalsämnen. Framtidens palliativa vård äger till stor del rum i hemmen och inom äldreomsorgen. 

    Frågeställning: Studien är en del av en större interventionsstudie, EDUC-PC studien, och omfattar baslinjedata från 6S-enkäten med fokus på hur personal inom äldreomsorgen uppfattar att de arbetar enligt ett personcentrerat palliativt förhållningssätt.  

    Metod: En kvantitativ ansats antogs. Enkäten som innehåller nio frågor skickades till 266 anställda varav 136 svarade.  Resultaten redovisas som deskriptiv statistik i form av antal, procenttal, med median (md) som centralt mått. 

    Resultat: Resultaten visar att den vård som ges uppfattas som bra eller mycket bra av personalen men att uppfattningarna varierar mellan olika yrkesgrupper. Innehållet i självbild, självbestämmande, sociala relationer och symtomlindring får alla höga poäng, medan de två existentiellt inriktade S:en; syntes och strategier, visar en större spridning mot lägre poäng.  

    Konklusion: Obalansen mellan de olika innehållen i 6S omvårdnadsmodellen visar att det finns brister i den palliativa omvårdnaden inom äldreomsorgen. Detta är tydligast när   de två S:en symtomlindring och strategier jämförs. Resultaten visar på ett behov av fortsatt fokus på äldre personers existentiella frågor inom äldreomsorgen.

  • 27.
    Landfeldt, Erik
    et al.
    IQVIA, Stockholm.
    Udo, Camilla
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Department of Social Work, Stockholm University, Stockholm; School of Health and Welfare, Dalarna University, Falun; Center for Clinical Research Dalarna-Uppsala University, Falun.
    Lövgren, Malin
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Advanced Pediatric Home Care, Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm.
    Sejersen, Thomas
    Department of Neuropediatrics, Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm; Department of Women's and Children's Health, Karolinska Institutet, Stockholm.
    Kreicbergs, Ulrika
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Department of Women's and Children's Health, Karolinska Institutet, Stockholm.
    Health-related quality of life of children with spinal muscular atrophy in Sweden: A prospective cohort study in the era of disease-modifying therapy2023Ingår i: European journal of paediatric neurology, ISSN 1090-3798, E-ISSN 1532-2130, Vol. 46, s. 67-73Artikel i tidskrift (Refereegranskat)
    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.

  • 28.
    Carlsson, Nina
    et al.
    Linnéuniversitetet; Internmedicin, Region Kalmar län.
    Alvariza, Anette
    Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Capio Palliativ vård Dalen.
    Bremer, Anders
    Linnéuniversitetet; Ambulanssjukvården, Region Kalmar län.
    Axelsson, Lena
    Sophiahemmet högskola.
    Årestedt, Kristofer
    Linnéuniversitetet; Forskningssektionen, Region Kalmar län.
    Symptoms of Prolonged Grief and Self-Reported Health Among Bereaved Family Members of Persons Who Died From Sudden Cardiac Arrest2023Ingår i: Omega, ISSN 0030-2228, E-ISSN 1541-3764, Vol. 87, nr 1, s. 66-86Artikel i tidskrift (Refereegranskat)
    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.

  • 29.
    Akkawi El Edelbi, Ranaa
    et al.
    Karolinska Institutet; Karolinska universitetssjukhuset.
    Eksborg, Staffan
    Karolinska Institutet; Karolinska universitetssjukhuset.
    Kreicbergs, Ulrika
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Karolinska institutet.
    Lövgren, Malin
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Karolinska institutet.
    Wallén, Klara
    Karolinska universitetssjukhuset.
    Ekman, Jennie
    Karolinska universitetssjukhuset.
    Lindemalm, Synnöve
    Karolinska universitetssjukhuset; Karolinska institutet.
    Parents' experiences of handling oral anticancer drugs at home: 'It all falls on me …'2023Ingår i: Journal of Evaluation In Clinical Practice, ISSN 1356-1294, E-ISSN 1365-2753, Vol. 29, nr 1, s. 94-100Artikel i tidskrift (Refereegranskat)
    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.

  • 30.
    Norinder, Maria
    et al.
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Capio Palliative Care, Dalen Hospital, Stockholm.
    Axelsson, Lena
    Department of Nursing Science, Sophiahemmet University, Stockholm.
    Årestedt, Kristofer
    Faculty of Health and Life Sciences, Linnaeus University, Kalmar; Department of Research, Region Kalmar County, Kalmar.
    Grande, Gunn
    Division of Nursing, Midwifery & Social Care, Faculty of Biology, Medicine and Health, University of Manchester, United Kingdom.
    Ewing, Gail
    Centre for Family Research, University of Cambridge, United Kingdom.
    Alvariza, Anette
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Stockholms Sjukhem, Research and Development Unit/Palliative Care, Stockholm.
    Enabling professional and personal growth among home care nurses through using the Carer Support Needs Assessment Tool Intervention: An interpretive descriptive study2023Ingår i: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 32, nr 13-14, s. 4092-4102Artikel i tidskrift (Refereegranskat)
    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.

  • 31.
    Ahmadi, Mehrnaz
    et al.
    Ahvaz Jundishapur University of Medical Sciences, Iran.
    Beiranvand, Samira
    Ahvaz Jundishapur University of Medical Sciences, Iran.
    Poormansouri, Saeed
    Ahvaz Jundishapur University of Medical Sciences, Iran.
    Matbouei, Mahsa
    Shahid Beheshti University of Medical Sciences, Iran; Semnan University of Medical Sciences, Iran.
    Rohani, Camelia
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Sense of coherence or self-efficacy as predictors of health-related quality of life in sickle cell disease patients2023Ingår i: Annals of Hematology, ISSN 0939-5555, E-ISSN 1432-0584, Vol. 102, s. 519-528Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Patients with sickle cell disease (SCD) suffer from impaired health-related quality of life (HRQoL). This study aimed to determine the level of HRQoL, sense of coherence (SOC), and self-efficacy (SE) in a sample of SCD patients, and to explore predictors of their physical and mental HRQoL. A cross-sectional descriptive study was conducted on 83 SCD patients of one university hospital. The data of the study was collected through Persian versions of the Short-Form Health Survey SF-36 (RAND 36-item), the Sense of Coherence Scale (SOC-13), and the Sickle Cell Self-Efficacy Scale (SCSES). The mean age of the patients was 26.34 ± 8.19 years old. Patients' mean scores for the Physical Component Summary (PCS), Mental Component Summary (MCS), SOC, and SCSES were 40.57 ± 17.18 (range: 0-100), 50.44 ± 17.95 (range: 0-100), 52.40 ± 15.35 (range: 13-91), 26.40 ± 6.96 (range: 9-45), respectively. Regression models showed that the level of the patients' SOC, was the main predictor of the MCS (β = 0.37, p < 0.001). However, the level of the patients' SE was the main predictor of the PCS (β = 0.30, p = 0.004). Also, "blood transfusion history" in patients was a common predictor for both the PCS (β =  - 0.28, p = 0.008) and the MCS (β =  - 0.29, p = 0.003). These results can assist nurses and clinicians to plan clinical interventions for SCD patients by focusing on increasing the level of the SOC and SE and improving SCD patients' HRQoL. Furthermore, measuring the level of the SOC and self-efficacy as screening tests are useful to find patients with a greater risk of impaired HRQoL.

  • 32.
    Holm, Maja
    et al.
    Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Sophiahemmet högskola.
    Weber Falk, Megan
    Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Alvariza, Anette
    Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Capio Palliativ vård Dalen.
    Sveen, Josefin
    Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Uppsala universitet.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Karolinska institutet.
    How parents of dependent children reason about their partner's impending death due to cancer2023Ingår i: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 47, nr 1, s. 105-110Artikel i tidskrift (Refereegranskat)
    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.

  • 33.
    Hudson, P L
    et al.
    St Vincent's Hospital, Australia; University of Melbourne, Australia; Vrije Universiteit Brussel, Belgium.
    Gardiner, C
    University of Sheffield, United Kingdom.
    Alvariza, Anette
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Capio Palliativ vård Dalen.
    Nicholas Dionne-Odom, J
    The University of Alabama at Birmingham, USA.
    Öhlén, J
    Göteborgs Universitet; Sahlgrenska Universitetssjukhuset.
    Carduff, E
    Marie Curie Hospice Glasgow, United Kingdom.
    Harding, R
    King's College London, United Kingdom.
    Witkamp, E
    Rotterdam University of Applied Sciences, the Netherlands.
    Payne, S
    Lancaster University, United Kingdom.
    Strategies and checklist for designing and conducting palliative care research with family carers: EAPC international expert elicitation study2023Ingår i: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 37, nr 1, s. 163-173Artikel i tidskrift (Refereegranskat)
    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.

  • 34.
    Steindal, Simen A
    et al.
    Lovisenberg Diaconal University College, Norway; VID Specialized University, Norway.
    Nes, Andréa Aparecida Gonçalves
    Lovisenberg Diaconal University College, Norway.
    Godskesen, Tove
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap. Uppsala universitet.
    Holmen, Heidi
    Oslo Metropolitan University, Norway; Oslo University Hospital, Norway.
    Winger, Anette
    Oslo Metropolitan University, Norway.
    Österlind, Jane
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Dihle, Alfhild
    Oslo Metropolitan University, Norway.
    Klarare, Anna
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Uppsala universitet.
    Advantages and Challenges of Using Telehealth for Home-Based Palliative Care: A Systematic Mixed Studies Review2023Ingår i: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 25Artikel, forskningsöversikt (Refereegranskat)
    Abstract [en]

    Background: Owing to the increasing number of people with palliative care needs and the current shortage of health care professionals (HCPs), providing quality palliative care has become challenging. Telehealth could enable patients to spend as much time as possible at home. However, no previous systematic mixed studies reviews have synthesized evidence on patients’ experiences of the advantages and challenges of telehealth in home-based palliative care.

    Objective: In this systematic mixed studies review, we aimed to critically appraise and synthesize the findings from studies that investigated patients’ use of telehealth in home-based palliative care, focusing on the advantages and challenges experienced by patients.

    Methods: This is a systematic mixed studies review with a convergent design. The review is reported according to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) statement. A systematic search was performed in the following databases: Allied and Complementary Medicine Database, CINAHL, Cochrane Central Register of Controlled Trials, Embase, Latin American and Caribbean Health Sciences Literature, MEDLINE, PsycInfo, and Web of Science. The inclusion criteria were as follows: studies using quantitative, qualitative, or mixed methods; studies that investigated the experience of using telehealth with follow-up from HCPs of home-based patients aged ≥18; studies published between January 2010 and June 2022; and studies published in Norwegian, Danish, Swedish, English, Portuguese, or Spanish in peer-reviewed journals. Five pairs of authors independently assessed eligibility of the studies, appraised methodological quality, and extracted data. The data were synthesized using thematic synthesis.

    Results: This systematic mixed studies review included 41 reports from 40 studies. The following 4 analytical themes were synthesized: potential for a support system and self-governance at home; visibility supports interpersonal relationships and a joint understanding of care needs; optimized information flow facilitates tailoring of remote caring practices; and technology, relationships, and complexity as perpetual obstacles in telehealth.

    Conclusions: The advantages of telehealth were that patients experience a potential support system that could enable them to remain at home, and the visual features of telehealth enable them to build interpersonal relationships with HCPs over time. Self-reporting provides HCPs with information about symptoms and circumstances that facilitates tailoring care to specific patients. Challenges with the use of telehealth were related to barriers to technology use and inflexible reporting of complex and fluctuating symptoms and circumstances using electronic questionnaires. Few studies have included the self-reporting of existential or spiritual concerns, emotions, and well-being. Some patients perceived telehealth as intrusive and a threat to their privacy at home. To optimize the advantages and minimize the challenges with the use of telehealth in home-based palliative care, future research should include users in the design and development process.

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  • 35.
    Skedsmo, Karoline
    et al.
    Lovisenberg Diaconal University College, Oslo, Norway; Department of Otorhinolaryngology, Head and Neck Surgery, Oslo University Hospital, Oslo, Norway.
    Nes, Andréa Aparecida Gonçalves
    Lovisenberg Diaconal University College, Oslo, Norway.
    Stenseth, Hege Vistven
    Lovisenberg Diaconal University College, Oslo, Norway.
    Hofsø, Kristin
    Lovisenberg Diaconal University College, Oslo, Norway; Department of Research and Development, Division of Emergencies and Critical Care, Oslo University Hospital, Oslo, Norway.
    Larsen, Marie Hamilton
    Lovisenberg Diaconal University College, Oslo, Norway.
    Hilderson, Deborah
    Karel de Grote University College, Antwerp, Belgium.
    Smis, Dieter
    GZA Hospitals, Antwerp, Belgium.
    Lundh Hagelin, Carina
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet.
    Olaussen, Camilla
    Lovisenberg Diaconal University College, Oslo, Norway.
    Solberg, Marianne Trygg
    Lovisenberg Diaconal University College, Oslo, Norway.
    Bingen, Hanne Maria
    Faculty of Health Studies, VID Specialized University, Oslo, Norway.
    Ølnes, Mia Alexandra
    Lovisenberg Diaconal University College, Oslo, Norway.
    Steindal, Simen A.
    Lovisenberg Diaconal University College, Oslo, Norway; Faculty of Health Studies, VID Specialized University, Oslo, Norway.
    Simulation-based learning in palliative care in postgraduate nursing education: A scoping review2023Ingår i: BMC Palliative Care, E-ISSN 1472-684X, Vol. 22, nr 1, artikel-id 30Artikel, forskningsöversikt (Refereegranskat)
    Abstract [en]

    Background: Nurses require advanced competence in palliative care, but they face wide variations in education and a shortage in opportunities for clinical placement. Simulation-based learning (SBL) can enable students to develop clinical skills, critical thinking and confidence. No scoping reviews to date have mapped the use of SBL in palliative care within postgraduate nursing education.

    Methods: The aim of this scoping review was to systematically map published studies on the use of SBL in palliative care in postgraduate nursing education. A scoping review was conducted using Arksey and O'Malley's (Int J Soc Res Meth 8(1):19-32, 2005) methodological framework. A systematic and comprehensive search of the Cumulative Index to Nursing and Allied Health Literature (CINAHL), the Education Resources Information Center (ERIC), Ovid MEDLINE, Ovid EMBASE, Allied and Complementary Medicine and PsycINFO was performed for studies published between January 2000 and April 2022. Two authors independently assessed papers for inclusion and extracted data. Reporting followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist. The protocol was registered on the Open Science Framework.

    Results: This review includes 10 studies. Three thematic groupings were identified: enhanced understanding of the importance of teamwork, interdisciplinarity and interpersonal skills; preparedness and confidence in one's ability to communicate during emotionally challenging situations; and impact and relevance to one's own clinical practice.

    Conclusions: The use of SBL in palliative care in postgraduate nursing education seems to enhance students' understanding of the importance of teamwork and interdisciplinarity. The review shows contradictory results regarding whether SBL in palliative care increases students' confidence in their communication skills. Postgraduate nursing students experienced personal growth after participating in SBL. Because our findings indicate that limited research has been conducted within this field, future research should (1) explore postgraduate nursing students' experiences with SBL in palliative care with a focus on more practical content such as symptom management, (2) examine the relevance and application of SBL in clinical practice, and (3) be reported in line with recommendations on the reporting of simulation research.

  • 36.
    Thermaenius, Ingrid
    et al.
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap.
    Udo, Camilla
    Högskolan Dalarna.
    Alvariza, Anette
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Lövgren, Malin
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    The Family Talk Intervention för barnfamiljer med palliativa vårdbehov: Hälso- och sjukvårdskuratorers initiala erfarenheter av hinder och möjligheter i klinisk praktik2023Konferensbidrag (Refereegranskat)
    Abstract [sv]

    Bakgrund När ett barn eller förälder drabbas av svår sjukdom påverkas alla familjemedlemmar. Behovet av psykosocialt stöd är identifierat sedan länge, trots detta finns få vetenskapligt utvärderade psykosociala stödprogram för hela familjen. Än mindre forskning om faktorer som påverkar införandet av nya psykosociala stödprogram i klinisk praktik. Kunskap om detta skulle kunna underlätta framtida strategier för implementering av psykosociala insatser.

    Syfte Att utforska hälso- och sjukvårdskuratorers erfarenheter av hinder och möjligheter vid införandet av ett psykosocialt familjebaserat stödprogram, the Family Talk Intervention (FTI), i klinisk praktik bland barnfamiljer med palliativa vårdbehov.

    Metod Delstudien ingår i ett större effekt-implementeringsprojekt som utvärderar FTI inom cancervård och specialiserad hemsjukvård där en förälder är svårt sjuk, samt på barnsjukhus och barnhospice där ett barn är svårt sjuk. Studien baseras på 11 fokusgrupper med 43 kuratorer som genomgått utbildning i FTI. Utbildningen innehöll teori, rollspel samt att genomföra FTI under handledning. FTI är en manualbaserad familjeintervention med målet att underlätta kommunikationen i familjen, öka kunskapen om sjukdomsrelaterade frågor, stödja föräldraskapet, samt synliggöra barnens behov. Data analyserades med kvalitativ innehållsanalys.

    Resultat Flera av hälso- och sjukvårdskuratorerna beskrev att FTI gav struktur till arbetet med barnfamiljer genom att barnens perspektiv synliggjordes (sjuka barn och barn som närstående) liksom familjens behov i stort. Teamet sågs av flera hälso- och sjukvårdskuratorer som en resurs vid rekrytering, men graden av deras involvering varierade. Vårdrelaterade faktorer som möjliggjorde eller hindrade implementeringen var relaterade till var i sjukdomsförloppet patienten befann sig, längden på vårdtiden samt vårdformen (slutenvård, öppenvård eller hemsjukvård). Vidare beskrevs bristande stöd från chef, hög arbetsbelastning, oklara förväntningar, hög personalomsättning samt ensamarbete som hindrande faktorer vid införandet av FTI.

    Konklusion Studien visar vikten av att beakta kontextuella faktorer, arbetsmiljöns påverkan i stort, liksom betydelsen av chefens engagemang för att uppnå en framgångsrik implementering av nya metoder

  • 37.
    Rönningås, Ulrika
    et al.
    Karolinska institutet; Sundsvalls sjukhus; Sophiahemmet högskola.
    Holm, Maja
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Sophiahemmet högskola.
    Doveson, Sandra
    Karolinska institutet; Sophiahemmet högskola.
    Fransson, Per
    Umeå universitet; Norrlands universitetssjukhus.
    Beckman, Lars
    Sundsvalls sjukhus.
    Wennman-Larsen, Agneta
    Karolinska institutet; Sophiahemmet högskola.
    Signs and symptoms in relation to progression, experiences of an uncertain illness situation in men with metastatic castration-resistant prostate cancer: A qualitative study2022Ingår i: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 31, nr 4, artikel-id e13592Artikel i tidskrift (Refereegranskat)
    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.

  • 38.
    Holmberg, Bodil
    et al.
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Godskesen, Tove
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Uppsala universitet.
    Dignity in bodily care at the end of life in a nursing home: An ethnographic study2022Ingår i: BMC Geriatrics, ISSN 1471-2318, E-ISSN 1471-2318, Vol. 22, nr 1, artikel-id 593Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: Nursing homes (NHs) are populated by the frailest older people who have multiple physical or mental conditions and palliative care needs that may convey the violation of dignity. Although dignity is a commonly used concept and a core value of end-of-life care, it is assumed to be complex, ambiguous, and multivalent. Thus, the aim of this study was to explore aspects of dignity in older persons' everyday lives in a NH.

    DESIGN: A focused ethnographic study design.

    METHODS: Data consisted of 170 h of fieldwork, including observations (n = 39) with residents (n = 19) and assistant nurses (n = 22) in a Swedish NH. Interviews were undertaken with residents several times (in total, n = 35, mean 70 min/resident). To study dignity and dignity-related concerns, we used the Chochinov model of dignity to direct the deductive analysis.

    RESULTS: The study showed that residents suffered from illness-related concerns that inhibited their possibilities to live a dignified life at the NH. Their failing bodies were the most significant threat to their dignity, as loss of abilities was constantly progressing. Together with a fear of becoming more dependent, this caused feelings of agony, loneliness, and meaninglessness. The most dignity-conserving repertoire came from within themselves. Their self-knowledge had provided them with tools to distinguish what was still possible from what they just had to accept. Socially, the residents' dignity depended on assistant nurses' routines and behaviour. Their dignity was violated by long waiting times, lack of integrity in care, deteriorating routines, and also by distanced and sometimes harsh encounters with assistant nurses. Because the residents cherished autonomy and self-determination, while still needing much help, these circumstances placed them in a vulnerable situation.

    CONCLUSIONS: According to residents' narratives, important dignity-conserving abilities came from within themselves. Dignity-conserving interventions did occur, such as emphatic listening and bodily care, performed in respect for residents' preferences. However, no strategies for future crises or preparing for death were observed. To protect residents' dignity, NHs must apply a palliative care approach to provide holistic care that comprises attention to personal, bodily, social, spiritual, and psychological needs to increase well-being and prevent suffering.

  • 39.
    Lövgren, Malin
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Ett stödprogram till barnfamiljer drabbade av svår sjukdom: Att samtala om det som är svårt2022Konferensbidrag (Refereegranskat)
    Abstract [sv]

    Barnfamiljer som lever med svår sjukdom står inför många utmaningar. Trots detta finns få vetenskapligt utvärderade stödprogram för dessa familjer. Denna föreläsning berör stödprogrammet "the Family TalkIntervention" (FTI), som ursprungligen kommer från psykiatrin, men som pilot-testats inom somatisk vård. Målet med FTI är att främja sjukdomsrelaterad kommunikation inom familjen (t ex prognos), öka kunskap omsjukdomen, samt att stödja föräldraskapet. Pilotstudien inom specialiserad palliativ hemsjukvård (när en förälder är sjuk) samt pediatrisk onkologi (när ett barn är sjukt) visade att FTI var genomförbar och att stödet familjen fått resulterade i att familjen funnit fungerande sätt att prata i familjen om det som är svårt. Det positiva utfallet har resulterat i att FTI nu implementeras på ett universitetssjukhus i Sverige där anställda hälso- och sjukvårdskuratorer utbildas. Parallellt genomförs en fullskalig studie inom specialiserad palliativ hemsjukvård. Förhoppningen är att FTI ska kunna utgöra ett nytt arbetssätt för att stödja barnfamiljer med svår sjukdom.

  • 40.
    Kreicbergs, Ulrika
    et al.
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Castor, Charlotte
    Ekström, Frida
    Palliativ vård i hemmet för barn med fokus på stödjande insatser från vården2022Konferensbidrag (Refereegranskat)
    Abstract [sv]

    Barn och familjer i behov av palliativ vård är fokus för denna session. Det finns variationer i möjligheten till palliativ vård för barn i hemmet beroende på var i landet man bor och kan inkludera alltfrån interprofessionella team i barnets hem till stöd på distans via telefon och digital teknik. Du som lyssnar kommer få ta del av aktuell forskning inom området samt få vårdpersonal- och föräldrar perspektiv på fördelar och utmaningar med palliativ vård i hemmet.

  • 41. Axelsson, Lena
    et al.
    Alvariza, Anette
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Årestedt, Kristofer
    Livskvalitet hos Närstående till personer i livets slut: Validering av The Quality of Life in Life-Threatening Illness - Family carer version2022Konferensbidrag (Refereegranskat)
    Abstract [sv]

    Bakgrund: Självskattningsinstrumentet Quality of Life in Life Threatening Illness - Family carer version (QOLLTI-F) är utvecklat för att mäta livskvalitet hos närstående till personer i livets slut. Instrumentet är översatt till svenska och har uppvisat tillfredsställande innehållsvaliditet. Vidare validering behövs.

    Syfte: Att utvärdera mätegenskaper för QOLLTI-F, med fokus på begreppsvaliditet och reliabilitet, bland närstående till personer i livets slut.

    Metod: Studien har en tvärsnittsdesign och data samlades in vid två specialiserade hemsjukvårdsenheter i två städer i Sverige. Totalt 114 närstående (61% kvinnor, medelålder 67,5 år) besvarade en enkät bestående av bakgrundsfrågor och självskattningsinstrumenten QOLLTI-F, Caregiver Burden Scale (CBS), Preparedness for Caregiving Scale (PCS) samt Reward of Caregiving Scale (RCS). Konvergerande validitet utvärderades genom att korrelera QOLLTI-F med CBS, PCS och RCS. För att utvärdera den relativa betydelsen av QOLLTI-Fs dimensioner för närståendes övergripande livskvalitet användes multipel linjär regressionsanalys. Intern konsistens utvärderades med Cronbach’s alfa.

    Resultat: De allra flesta närstående hade svarat på alla frågor och hela svarsskalan från 0–10 användes för nästan alla frågor. Samtliga QOLLTI-F dimensioner förutom patientens tillstånd korrelerade som förväntat med upplevelse av påfrestning, förberedelse för att vårda och/eller egen behållning vilket stöder konvergerande validitet. Dimensionerna i QOLLTI-F förklarade tillsammans 70,5% av variationen i övergripande livskvalitet; närståendes eget tillstånd och närståendes perspektiv hade högst förklaringsvärde. Cronbach’s alfa varierade mellan 0,58–0,86.

    Betydelse: Självskattningsinstrumentet QOLLTI-F uppvisade goda mätegenskaper för att skatta närståendes livskvalitet i den aktuella studien. Resultaten indikerar att den övergripande frågan kan användas enskilt, speciellt när intresset är att fånga livskvalitet utifrån närståendes eget tillstånd och perspektiv.

  • 42.
    Alvariza, Anette
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Att vara nära under livets sista tid: Personcentrerat stöd2022Konferensbidrag (Refereegranskat)
    Abstract [sv]

    Presentationen kommer att fokusera familj och närstående och hur vården kan arbeta för att möta behov av stöd samt se till närståendes egen kraft och resurser. Hur är det att vara närstående till en person med palliativa vårdbehov? Hur vet vi vilka som behöver stöd, vilken typ av stöd och när och vad kan vi göra?

  • 43. Cameron, Fiona
    et al.
    Klarare, Anna
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Janze, Anna
    Ett värdigt liv i rörelse nära döden: Erfarenheter av en rörelsestig på en palliativ vårdavdelning (nr 9)2022Konferensbidrag (Refereegranskat)
    Abstract [sv]

    Bakgrund: Palliativ vård är baserad på en helhetssyn på människan med fokus på livskvalitet och värdighet. Fysisk aktivitet ger positiva effekter för patienter med avancerad cancer men inom palliativ vård är orken ofta begränsad hos den sjuke. Det saknas forskning angående hur upplevelsen av rörelse kan påverka välbefinnandet och hur personal kan främja fysisk aktivitet på en specialiserad palliativ vårdavdelning.

    Syfte: Att beskriva erfarenheterna av en Rörelsestig på en specialiserad palliativ vårdavdelning.

    Metod: Studien är en kvalitativ studie med induktiv ansats. Initialt skapades en 60 meter lång promenadstig med 4 utspridda övningsstationer på hospiceavdelningen. Data om erfarenheterna av Rörelsestigen samlades in genom fyra fokusgruppintervjuer med 11 vårdpersonal och en volontär. Inspelade samtal transkriberades och data analyserades med kvalitativ innehållsanalys.

    Resultat: Dataanalysen resulterade i fem underteman. De första två; ’Ett inspirerande och utmanande verktyg att främja fysisk aktivitet’ samt ’Rörelsestigen innebär gemenskap’ var beskrivande, baserade på deltagarnas personliga erfarenheter och reflektioner. I de tre andra undertemana, ’Mål ger dagen mening’, ’Återtar kontroll över sig själv’ och ’Jag är kvar i livet!’ uttryckte deltagarna sig om patienters och närståendes upplevelser. Undertemana samlades under huvudtemat ’Ett värdigt liv i rörelse nära döden.’

    Betydelse: Resultaten visar ett brett spann i upplevelser av Rörelsestigen, relaterade till olika aspekter av att vara en människa i en svår situation. Studien antyder att upplevelse av rörelse kan främja välbefinnandet och värdighet för patienter inom inneliggande palliativ vård. Rörelsestigen är enkel att sätta upp och har möjlighet att vara ett användbart verktyg för personal att kunna främja fysisk aktivitet.

  • 44. Sundelöf, Johan
    et al.
    Melin Johansson, Christina
    Holmberg, Bodil
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Thurfjäll, David
    DeMarinis, Valerie
    H.O.P.E: Ett frågeformulär på svenska för att identifiera religiösa, andliga och existentiella behov (nr 69)2022Konferensbidrag (Refereegranskat)
    Abstract [sv]

    Bakgrund: Enligt WHO kännetecknas palliativ vård av helhetssyn med mål att möta fysiska, psykiska, sociala liksom religiösa, andliga och existentiella behov. Att möta existentiella behov förbättrar livskvaliteten men forskningen visar att många patienter i palliativ vård har otillräckligt mötta existentiella behov. Det saknas frågeformulär på svenska för att identifiera och möta existentiella behov i palliativ vård.

    Syfte: Att utvärdera patienters och personals erfarenheter av att använda en svensk översättning av frågeformuläret H.O.P.E (Hope, Organized Religion, Personal practices, Effects on medical care) vid en palliativ slutenvårdsenhet.

    Metod: H.O.P.E översattes från engelska till svenska genom ”double back translation”. Sex patienter, en sjuksköterska, en läkare och en kurator deltog i djupintervjuer om erfarenheter av att använda H.O.P.E i samtal med patienter. Intervjuerna spelades in digitalt, transkriberades och analyserades med hermeneutisk ansats

    Resultat: Patienter och personal upplevde att H.O.P.E var applicerbart, uppskattat och relevant att använda vid samtal om religiösa, andliga och existentiella behov. H.O.P.E associerades med känslor av att ”känna sig sedd” och bidrog till att identifiera copingstrategier hos patienterna. I samtalen identifierades och adresserades existentiella frågor som mening, hopp, skuld och ånger som följdes upp vid behov. Modifieringar föreslogs av språk som ibland kändes akademiska. Separering föreslogs av vissa frågor. Aspekter av existentiella behov som hopp/hopplöshet, mening/meningslöshet, skuld och ansvar skulle kunna adresseras ytterligare för att bättre möta en sekulär kontext.

    Betydelse: Studiens resultat visade att den svenska versionen av H.O.P.E är användbart, uppskattat och relevant vid samtal med patienter i palliativ vård om religiösa, andliga och existentiella behov. Modifiering av språk, uppdelning i flera frågor och tillägg av fler frågor utifrån en sekulär kontext skulle ytterligare förbättra formuläret. Framtida studier behövs för utveckling och validering av formuläret.

  • 45.
    Norinder, Maria
    et al.
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Alvariza, Anette
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Årestedt, Kristofer
    Lind, Susanne
    Ett personcentrerat förhållningssätt för att stödja närstående i den specialiserade palliativa hemsjukvården: CSNAT interventionen (CSNAT-I)2022Konferensbidrag (Refereegranskat)
    Abstract [sv]

    Bakgrund: Närstående är betydelsefulla för patienter som vårdas i hemmet vid livets slut och tar ofta ett stort ansvar. De ger ofta den sjuke både socialt och existentiellt stöd samtidigt som de ibland utför omfattande vård. I sin nya vårdande roll riskerar närstående sin egen hälsa och välbefinnande. Kontinuerligt och anpassat stöd för den närstående kan göra det möjligt för närstående att på bästa sätt stödja patienten men även att upprätthålla sin egen hälsa och välbefinnande.

    Syfte: Att undersöka sjuksköterskors förväntningar och farhågor inför att prova en personcentrerad intervention för närstående i specialiserad palliativ hemsjukvård.

    Metod: CSNAT-I testas vid sex specialiserade hemsjukvårdsenheter i Sverige. CSNAT interventionen består av 1) ett formulär med 15 frågor om behov av stöd strukturerat kring 15 områden inom praktiska, emotionella, existentiella och sociala aspekter och 2) en personcentrerad process som utifrån fem steg guidar bedömning och beslut om stödinsatser utifrån närståendes egna reflektioner och prioriteringar. Intervjuer har genomförts med 11 sjuksköterskor. För analys används tolkande beskrivning.

    Resultat: Resultat från de hittills 11 genomförda intervjuerna visar att sjuksköterskorna saknar ett strukturerat arbetssätt som gör det möjligt identifiera närståendes individuella stödbehov under hela patientens vårdtid. Förhoppningar framkom om att CSNAT-I ska ge plats för närståendesamtal i det dagliga arbetet, ge guidning i samtalet så att så att alla närstående har samma möjlighet till stöd utifrån sina egna behov vilket de hoppades skulle göra stödet mer effektivt. Farhågor uttrycktes om att de föreställde sig att samtalen skulle kunna ta mycket tid i deras dagliga arbete.

    Betydelse: Ger en ökad kunskap om sjuksköterskors förväntningar och farhågor inför en ny intervention för att stödja närstående. Kunskapen kan hjälpa till i utveckling och implementering av framtida interventioner.

  • 46.
    Pohlkamp, Lilian
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Att möta människor i komplicerad sorg2022Konferensbidrag (Refereegranskat)
    Abstract [sv]

    Sorg är en naturlig del av livet, för att vi människor är sociala och knyter relationer igenom hela livet. Att bearbeta förlusten när en älskad person dör kräver ett sorgearbete, många klarar det på egen hand med stöd i sitt sociala nätverk. Sorg som är ihållande och behöver behandling, brukar benämnas komplicerad sorg. Presentationen på denna konferens kommer att fokusera på mötet med människor med komplicerad sorg, samt faktorer som kan ge en djupare förståelse av fenomenet.

  • 47. Gedda, Jenny
    et al.
    Goliath, Ida
    Dabrowski, Michael
    Alvariza, Anette
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    We Are Co: Ett digitalt verktyg som stimulerar och inspirerar medmänniskor till en förbättradgemensam upplevelse i palliativ vård2022Konferensbidrag (Refereegranskat)
    Abstract [sv]

    Trots insikten om den sociala delens betydelse för en holistisk vård saknas idag personcentrerade lösningar på hur vi kan möta upp och stödja den döendes och de närståendes sociala situation i palliativ vård.

    Syftet med projektet är att utforma en app för den som är nära livets slut och hens närstående. Målet är ett digitalt verktyg som ska bidra till att inspirera och engagera människor att belysa livet, den unika individen och skapa upplevelser av gemenskap, vardag, hopp och delaktighet nära livets slut. Genom att utgå från det sociala mötet och fokusera på att bidra med konkret inspiration för att stimulera till aktiviteter, samtal och möten.

    En innovationsprocess används där patienter med behov för palliativ vård, närstående, experter från vården och forskare deltar för att skapa förutsättningar för en användarcentrerad och holistisk digital tjänst. Insikter och koncept utformas i workshops med närståendegrupp (12 personer som förlorat närstående) samt intervjuer med slutanvändare och workshops med expertgruppen (10 experter med erfarenhet av palliativvård). Genom att involvera användare löpande i utvecklingen samskapas en lättanvänd, skalbar, jämlik och användarvänlig tjänst med hög grad av personifiering.

    Resultat från workshops och intervjuer är positiva och bekräftar ett behov av ett verktyg med fokus på det sociala mellanmänskliga mötet. Användartester av första prototypen bidrog till en mer innovativ användning av bild och video och utökad fokus på imaginär inspiration som grundas på sinnen och livsämnen.

    Projektet har potential att addera förutsättningar att underlätta och inspirera personer nära livets slut och närståendes möten under vårdperioden med fokus på sociala upplevelser. En förbättrad social upplevelse kan minska stress för personen och närstående, möjliggöra för personalen att fokusera på de andra viktiga områdena av vården samt skapa bättre förutsättningar för kommunikation mellan personer nära livets slut, närstående och personalen.

  • 48.
    Häger Tibell, Louise
    et al.
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Alvariza, Anette
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Kreicbergs, Ulrika
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Holm, Maja
    Webbaserat stöd för närstående inom specialiserad palliativ hemsjukvård: narstaende.se2022Konferensbidrag (Refereegranskat)
    Abstract [sv]

    Bakgrund: Det är vanligt att närstående tar stort ansvar för vård i hemmet men också att de känner sig oförberedda inför livet med en svårt sjuk partner. Många upplever en psykiskt och social påfrestning, nedsatt hälsa och bristande insikt om framtiden. Högre grad av förberedelse kan bidra till mindre oro, ångest, nedstämdhet och bättre välbefinnande. Med syfte att erbjuda stöd har en webbplats, narstaende.se, innehållande filmer där sjukvårdspersonal (autentiska) möter närstående (skådespelare) i en situation likt den de närstående befinner sig i utvecklats. Det finns även informativa texter samt länkar till vidare information och ett chattforum.

    Syfte: Att utvärdera användbarhet, innehåll och de närståendes upplevelse av narstaende.se.

    Metod: Närstående vid ASIH enheter i Stockholm inkluderas och de besvarar en enkät innan tillgång tillwebbplatsen samt efter 4 veckor. I enkät två ingår frågor om användande av webbplatsen, hur de uppfattat filmer, texter, länkar samt chatt, inverkan på förberedelse att vårda. De närstående som samtycker intervjuas för att få djupare förståelse.

    Resultat: Data från enkäter visar att flertalet anser att tillgången till narstaende.se kom vid lämplig tidpunkt och att de skulle rekommendera den till andra i liknande situation. I intervjuer har närstående uttryckt att de tagit vara på dagarna på ett annat sätt, känt stöd i att arbeta eller vara hemma mer, göra aktiviteter på egen hand, förberett praktiska frågor samt fått bekräftelse i att ”det här är vanligt eller naturligt att känna”. Några uttrycker att delar av informationen samt enkäterna varit till särskild hjälp, tankar och känslor har väckts som kan vara svåra men som samtidigt beskrivs viktiga i bearbetning av situationen.

    Betydelse: Projektet kan ge kunskap om hur stöd i webbaserad form tas emot, om och hur det används och om intervention kan bidra till ökad förberedelse.

  • 49. Schultz, Susanne
    et al.
    Weiner, Charlotte
    Bergius, Helena
    Lövgren, Malin
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Pediatrisk palliativ vård på akutsjukhus: Strategier för att tillgodose barns behov av palliativ vård (nr 15)2022Konferensbidrag (Refereegranskat)
    Abstract [sv]

    Bakgrund och syfte: Barn med palliativa vårdbehov i Sverige vårdas i stor utsträckning på akutsjukhus. Studier har visat att det finns utmaningar att samtidigt ge både kurativ- och palliativ vård. Att helt gå över till palliativ vård av barn kan samtidigt innebära en utdragen process som sker på bekostnad av barnets livskvalitet. Därmed är det mycket viktigt att det finns en plan för hur barn med palliativa vårdbehov kan erbjudas palliativ vård på akutsjukhus. Syftet med detta projekt är att skapa strategier för att tillgodose barns behov av palliativvård på Astrid Lindgrens Barnsjukhus (ALB) i Stockholm.

    Metod och Resultat: Sedan flera år finns ett multiprofessionellt palliativt nätverk på ALB som verkar för att utveckla den pediatriska palliativa vården på sjukhuset. Riktlinjer för omhändertagande av avlidet barn har upprättats, liksom riktlinjer för stöd till syskon. Vidare har material i samband med dödfalls köpts in till varje vårdenhet som består av en låda med material så att efterlevande t.ex. kan göra handavtryck på barnet och ta en hårlock. Under 2021 har en utbildning till palliativa ombud inom pediatriken utvecklats och under hösten 2022 kommer denna att ges på ALB. Detta i ett led att bättre identifiera barn med palliativa vårdbehov samt att erbjuda palliativ vård till dessa. De palliativa ombuden kommer också fungera som ”faciliterare” för att implementera det nationella vårdprogrammet i palliativ vård för barn som lanserades första gången 2021.

    Slutsats: Olika sjukhusövergripande strategier såsom riktlinjer, utbildningar samt praktiska åtgärder är verktyg som kan hjälpa vårdpersonal att tillgodose barns behov av palliativ vård på akutsjukhus.

  • 50. Carlsson, Nina
    et al.
    Årestedt, Kristoffer
    Alvariza, Anette
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.
    Axelsson, Lena
    Bremer, Anders
    Det professionella och sociala stödets betydelse för symtom på förlängd sorg hos närstående till personersom avlidit till följd av hjärtstopp2022Konferensbidrag (Refereegranskat)
    Abstract [sv]

    Bakgrund: Ett palliativt förhållningssätt omfattar uppföljning av närstående vilket ofta saknas vid plötsliga dödsfall. Närstående riskerar då att lämnas utan professionellt stöd med obesvarade frågor, vilket kan bidra till förlängd sorg.

    Syfte: Att utforska det professionella och sociala stödets betydelse för symtom på förlängd sorg hos närstående till personer som avlidit till följd av plötsligt hjärtstopp.

    Metod: Denna korrelerande observationsstudie baserades på en enkät till närstående sex och tolv månader efter dödsfallet. Enkäten bestod av bakgrundsfrågor om de närstående, förlusten, och professionellt stöd, samt validerade skattningsskalor för att mäta förlängd sorg (PG-13) och socialt stöd (MSPSS). Data analyserades med regressionsanalyser.

    Resultat: Deltagarna (n=69) var i genomsnitt 61 år (37–71) och flertalet var kvinnor (67%). Vanligaste relationen till den avlidne var vuxna barn (52%) och efterlevande partner (36%). Vid sex månader skattade de närstående som hade ett professionellt stöd högre symtomnivåer av förlängd sorg än de utan professionellt stöd (B=10,28,p=0,001). Ett signifikant samband fanns även mellan högre socialt stöd och lägre självskattade symtom på förlängd sorg, oavsett om stödet kom från familj (B=-3,24, p=0,001), vänner (B=-2.43, p=0,020) eller andra betydelsefulla personer (B=-2,29, p=0,010). Vid tolv månader kvarstod endast sambandet till professionellt stöd (B=9,05, p=0,020). En majoritet skattade färre eller oförändrade symtom på förlängd sorg vid tolv månader jämfört med sex månader, men en betydande andel skattade högre symptomnivåer (33%).

    Betydelse: Sambandet mellan professionellt stöd och höga symtomnivåer av förlängd sorg visar på betydelsen av efterlevandestöd. Genom att stödja närstående i kommunikationen med familj och vänner kan det sociala stödet stärkas. För att understödja den närståendes sorgeprocess bör stöd erbjudas i både akut och palliativ kontext.

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