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  • 1.
    Alvariza, Anette
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Holm, Maja
    Sophiahemmet högskola.
    Palliativ vård i hemmet2019In: Hemsjukvård: olika perspektiv på trygg och säker vård / [ed] Mirjam Ekstedt; Maria Flink, Stockholm: Liber, 2019, p. 83-100Chapter in book (Other academic)
  • 2.
    Alvariza, Anette
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Dalens sjukhus, Stockholm.
    Holm, Maja
    Mälardalens högskola; Linnéuniversitet, Växjö.
    Bylund-Grenklo, Tove
    Linnéuniversitetet, Växjö; Karo­linska institutet.
    Goliath, Ida
    Karolinska institutet; Ersta sjukhus, Stockholm.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Viktigt att stärka närståendes möjligheter att förbereda sig2016In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 113, article id D4YCArticle in journal (Other academic)
  • 3.
    Doveson, Sandra E.
    et al.
    Karolinska institutet.
    Holm, Maja
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. 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 study2023In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 21, no 2, p. 230-238Article in journal (Refereed)
    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.

  • 4.
    Doveson, Sandra
    et al.
    Karolinska institutet; Sophiahemmet högskola.
    Holm, Maja
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet högskola.
    Axelsson, Lena
    Sophiahemmet högskola.
    Fransson, Per
    Umeå universitet; Norrlands universitetssjukhus.
    Wennman-Larsen, Agneta
    Karolinska institutet; Sophiahemmet högskola.
    Facing life-prolonging treatment: The perspectives of men with advanced metastatic prostate cancer - An interview study2020In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 49, article id 101859Article in journal (Refereed)
    Abstract [en]

    PURPOSE: Several life-prolonging treatment options have recently become available for metastatic castration-resistant prostate cancer. However, research regarding patient experiences while undergoing these treatments is scarce. The aim was to explore the perspectives of men when facing life-prolonging treatment of metastatic castration-resistant prostate cancer.

    METHOD: Qualitative interviews were conducted with 16 men as they were starting, undergoing or had completed their first life-prolonging treatment. Interpretive description was used for analysis.

    RESULTS: The results illuminate the complexity of facing life-prolonging treatment, with interlaced dimensions beyond just the outcome, and where the men described other dimensions of their lives in relation to the treatment. The results are presented as 4 themes; Considering treatment when the remainder of life is at stake, Preparing for the life-prolonging treatment after deciding to go through with it, Considering the prospect of the life-prolonging treatment not being successful and Reflecting on death and dying in the light of a life-limiting illness.

    CONCLUSIONS: The quality and content of the remainder of life are central for men when facing life-prolonging treatment of metastatic castration-resistant prostate cancer. This is important when weighing desired treatment outcomes against side effects, and when reflecting upon whether going through with treatment would be worth it or not. The results illuminate the importance of encouraging men at this stage to express expectations, hopes and fears regarding the treatment and the future when considering life-prolonging treatments. Nurses working with these patients are important in the decision-making process and in evaluating treatments, to detect needs for interventions.

  • 5.
    Henoch, Ingela
    et al.
    Göteborgs universitet.
    Carlander (Goliath), Ida
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Holm, Maja
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    James, Inger
    Örebro universitet.
    Sarenmalm, Elisabeth Kenne
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Skaraborgs sjukhus.
    Lundh Hagelin, Carina
    Karolinska institutet; Sophiahemmet högskola; Stockholms sjukhem.
    Lind, Susanne
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Sandgren, Anna
    Jönköping university; Linnéuniversitetet.
    Öhlén, Joakim
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Göteborgs universitet.
    Palliative Care Research: A Systematic Review of foci, designs and methods of research conducted in Sweden between 2007 and 20122016In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 30, no 1, p. 5-25Article, review/survey (Refereed)
    Abstract [en]

    BACKGROUND: In 2007, a literature review was undertaken of palliative care research from Sweden during the 1970s-2006, paving the way for a follow-up study to explore the recent developments. The aim was to systematically examine palliative care research from Sweden between 2007 and 2012, with special attention to methods, designs and research foci.

    METHODS: A literature review was undertaken. The databases Academic search elite, Age line, Ahmed, Cinahl, PsychInfo, PubMed, Scopus, Soc abstracts, Web of science and Libris were reviewed for Swedish palliative care research studies published from 2007 to 2012, applying the search criteria 'palliative care OR palliative medicine OR end-of-life care OR terminal care OR hospice care OR dying OR death'.

    RESULTS: A total of 263 papers met the inclusion criteria, indicating an increased volume of research compared to the 133 articles identified in the previous review. Common study foci were symptom assessment and management, experiences of illness and care planning. Targeting non-cancer-specific populations and utilisation of population-based register studies were identified as new features. There was continued domination of cross-sectional, qualitative and mono-disciplinary studies, not including ethnic minority groups, nonverbally communicable people or children <18 years of age.

    CONCLUSIONS: The trend is that Swedish palliative care research has expanded in volume from 2007 to 2012 compared to during the 1970s to 2006, with increasing participation of non-cancer-specific populations. A domination of qualitative approaches and small, cross-sectional studies with few interventions is still characteristic. Still more strategies are needed to expand the knowledge development of palliative care to respond to demographical, epidemiological, therapeutic and healthcare structure changes.

  • 6.
    Henriksson (Alvariza), Anette
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Hudson, Peter
    Centre for Palliative Care, St. Vincent's Hospital and Collaborative Centre of The University of Melbourne, Fitzroy, Victoria, Australia.
    Öhlen, Joakim
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Thomas, Kristina
    Centre for Palliative Care, St. Vincent's Hospital and Collaborative Centre of The University of Melbourne, Fitzroy, Victoria, Australia.
    Holm, Maja
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Carlander (Goliath), Ida
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm.
    Hagell, Peter
    The PRO-CARE Group, School of Health and Society, Kristianstad University, Kristianstad.
    Årestedt, Kristofer
    Center for Collaborative Palliative Care, Linnaeus University, Kalmar.
    Use of the Preparedness for Caregiving Scale in Palliative Care: A Rasch Evaluation Study2015In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 50, no 4, p. 533-541Article in journal (Refereed)
    Abstract [en]

    CONTEXT: Studies have shown that family carers who feel more prepared for the caregiver role tend to have more favorable experiences. Valid and reliable methods are needed to identify family carers who may be less prepared for the role of supporting a person who needs palliative care.

    OBJECTIVES: The aim of this study was to evaluate the measurement properties of the original English version and a Swedish version of the Preparedness for Caregiving Scale (PCS).

    METHODS: The sample (n = 674) was taken from four different intervention studies from Australia and Sweden, all focused on improving family carers' feelings of preparedness. Family carers of patients receiving palliative home care were selected, and baseline data were used. The measurement properties of the PCS were evaluated using the Rasch model.

    RESULTS: Both the English and Swedish versions of the PCS exhibit sound measurement properties according to the Rasch model. The items in the PCS captured different levels of preparedness. The response categories were appropriate and corresponded to the level of preparedness. No significant differential item functioning for age and sex was detected. Three items demonstrated differential item functioning by language but did not impact interpretation of scores. Reliability was high (>0.90) according to the Person Separation Index.

    CONCLUSION: The PCS is valid for use among family carers in palliative care. Data provide support for its use across age and gender groups as well as across the two language versions.

  • 7.
    Holm, Maja
    Ersta Sköndal University College, Palliative Reserch Centre, PRC. Karolinska Institutet.
    To prepare for family caregiving in specialized palliative home care: an ongoing process2014Conference paper (Other academic)
  • 8.
    Holm, Maja
    et al.
    Sophiahemmet högskola.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio ASIH och palliativ vård Dalen.
    Stödinterventioner till närstående under pågående vård2020In: Palliativ vård: begrepp och perspektiv i teori och praktik / [ed] Birgitta Andershed; Britt-Marie Ternestedt, Lund: Studentlitteratur AB, 2020, 2, p. 485-498Chapter in book (Other academic)
  • 9.
    Holm, Maja
    et al.
    Sophiahemmet högskola.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Capio Palliativ vård Dalen.
    Fürst, Carl-Johan
    Lunds universitet.
    Öhlen, Joakim
    Göteborgs universitet.
    Årestedt, Kristofer
    Linnéuniversitetet; Länssjukhuset i Kalmar.
    Psychometric evaluation of the Texas revised inventory of grief in a sample of bereaved family caregivers.2018In: Research in Nursing & Health, ISSN 0160-6891, E-ISSN 1098-240X, Vol. 41, no 5, p. 480-488Article in journal (Refereed)
    Abstract [en]

    The Texas Revised Inventory of Grief (TRIG) was developed to measure the intensity of grief after the death of a close person. It consists of two scales: TRIG I (past behaviors) and TRIG II (present feelings). Because of inconsistencies in previous validations, the instrument needs to be further validated, hence the aim of this study was to evaluate the psychometric properties of the TRIG in a sample of bereaved family caregivers in Sweden. The TRIG was translated to Swedish according to standard principles, and 129 bereaved family caregivers completed the questionnaire. Parallel analysis was used to decide the number of factors to extract, followed by confirmatory factor analysis. An ordinal version of Cronbach's alpha was used to evaluate the internal consistency of the scales. Construct validity was tested against the Hospital Anxiety and Depression Scale (HADS). The factor analyses resulted in one factor being retained for both scales. The internal consistency was excellent (α > 0.9) for both scales. Construct validity was supported by strong correlations between TRIG I and TRIG II as well as moderate correlations between the TRIG scales and HADS. In conclusion, the TRIG has sound psychometric qualities and the two scales should be treated as unidimensional measures of grief. Hence, the instrument is suited to be used in the context of palliative care.

  • 10.
    Holm, Maja
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Carlander (Goliath), Ida
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Fürst, Carl-Johan
    Lunds universitet.
    Wengström, Yvonne
    Karolinska institutet; Örebro universitet.
    Årestedt, Kristofer
    Linköpings universitet; Linnéuniversitetet.
    Öhlen, Joakim
    Ersta Sköndal University College, Palliative Research Centre, PRC. Göteborgs universitet.
    Henriksson (Alvariza), Anette
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet; Capio Geriatrik, Dalen, Stockholm.
    Delivering and participating in a psycho-educational intervention for family caregivers during palliative home care: A qualitative study from the perspectives of health professionals and family caregivers2015In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 14, no 16Article in journal (Refereed)
    Abstract [en]

    Background: Family caregivers in palliative care have a need for knowledge and practical support from health professionals, resulting in the need for educational and supportive interventions. However, research has mainly focused on the experiences of family caregivers taking part in interventions. To gain an increased understanding of complex interventions, it is necessary to integrate the perspectives of health professionals and family caregivers. Hence, the aim of this study is to explore the perspectives of health professionals and family caregivers of delivering and participating in a psycho-educational intervention in specialized palliative home care.

    Methods: A psycho-educational intervention was designed for family caregivers based on a theoretical framework describing family caregiver’s educational, emotional and practical involvement as knowing, being and doing. The intervention was delivered over three sessions, each of which included a presentation to family caregivers by healthcare professionals from an intervention manual based on the theoretical framework. For the qualitative data collection, an interpretive descriptive design was chosen. Data were collected through focus group discussions with health professionals and individual interviews with family caregivers. Data were analysed using framework analysis.

    Results: From the perspectives of both health professionals and family caregivers, the delivering and participating in the intervention was described as a positive experience. Although the content was not always adjusted to the family caregivers’ individual situation, it was perceived as valuable. Consistently, the intervention was regarded as something that could make family caregivers better prepared for caregiving. Health professionals found that the work with the intervention demanded time and engagement from them and that the manual needed to be adjusted to suit group characteristics, but the experience of delivering the intervention was still something that gave them satisfaction and contributed to them finding insights into their work.

    Conclusions: The theoretical framework of knowing, being and doing used in this study seems appropriate to use for the design of interventions to support family caregivers. In the perspectives of health professionals and family caregivers, the psycho-educational intervention had important benefits and there was congruence between the two groups in that it provided reward and support. In order for health professionals to carry out psycho-educational interventions, they may be in need of support and supervision as well as securing appropriate time and resources in their everyday work.

  • 11.
    Holm, Maja
    et al.
    Mälardalens högskola.
    Goliath, Ida
    Karolinska Institutet.
    Södlind, Hanna
    Palliative Care Unit, Solna Sundbyberg, Stockholm, Sweden.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Leading an intervention for family caregivers: a part of nursing in palliative care2017In: International Journal of Palliative Nursing, ISSN 1357-6321, E-ISSN 2052-286X, Vol. 23, no 4, p. 166-172Article in journal (Refereed)
    Abstract [en]

    Professional leadership has been highlighted as an important part of successful intervention delivery. The aim of this study is to explore the narratives of nurses involved in leading a group intervention for family caregivers in palliative care. Nurses were interviewed about their experiences as group leaders in a psycho-educational group intervention, which was delivered at 10 specialised palliative home care settings, with the help of an intervention manual. Data were analysed with interpretive descriptive methodology. Three themes were identified in the analysis: embracing the leading role, developing qualities as a group leader, and professional and personal development. The results showed that the role as group leader initially was a challenge for the nurses, but that they gradually were able to develop the professional and personal skills that were required. The nurses believed that their profession was best suited to lead this kind of supportive intervention.

  • 12.
    Holm, Maja
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Henriksson (Alvariza), Anette
    Ersta Sköndal University College, Department of Health Care Sciences. Karolinska institutet.
    Carlander (Goliath), Ida
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Wengström, Yvonne
    Karolinska Institutet.
    Öhlen, Joakim
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Preparing for family caregiving in specialized palliative home care: an ongoing process2014In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 3, p. 767-775Article in journal (Refereed)
  • 13.
    Holm, Maja
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Henriksson (Alvariza), Anette
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Wengström, Yvonne
    Karolinska Institutet, Institutionen för neurobiologi, vårdvetenskap och samhälle.
    Öhlén, Joakim
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    The Process of Preparedness for Caregiving among Family Members in Palliative Home Care2014In: Palliative Medicine / [ed] Catherine Walshe, Sage Publications, 2014, p. 622-623Conference paper (Refereed)
    Abstract [en]

    Background: Preparedness for caregiving has been found to be an important concept in palliative home care where family members are taking a great responsibility for the patient’s care. Low preparedness has been linked to negative consequences and a greater burden for these family members. Preparedness has been defined as the perceived readiness to provide care and could be seen as a continuous process rather than a static condition. Aim: The aim of the study was to describe the process of preparedness for caregiving among family members in palliative home care. Method: An interpretive descriptive design was chosen. A strategic sampling method was applied and 12 family members of patients in specialised palliative home care were interviewed, using a semi-structured interview guide. The interviews were analysed by constant comparative analysis, using the software program NVivo. Results: The process of preparedness for caregiving included three patterns: Awaring, adjusting and grieving. The process was not described as linear but rather a continuous process where the family members were moving between the patterns during the trajectory. In all three patterns, grief was an important factor, affecting the caregiver role and the family members´ preparedness for caregiving. Conclusion: Exploring the process of preparedness for caregiving in family members could bring a greater understanding for this group and provide health professionals with new insights in how to support them.

  • 14.
    Holm, Maja
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. 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 University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Lövgren, Malin
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. 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 Intervention2024In: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 71, no 1Article in journal (Refereed)
    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.

  • 15.
    Holm, Maja
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet högskola, Stockholm.
    Lövgren, Malin
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska universitetssjukhuset.
    Alvariza, Anette
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Stockholms sjukhem.
    Eklund, Rakel
    Uppsala universitet.
    Kreicbergs, Ulrika
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Experiences of being a severely ill parent of dependent children receiving care at home: Hopes and challenges2024In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 22, no 1, p. 169-173Article in journal (Refereed)
    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.

  • 16.
    Holm, Maja
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet högskola.
    Weber Falk, Megan
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    How parents of dependent children reason about their partner's impending death due to cancer2023In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 47, no 1, p. 105-110Article in journal (Refereed)
    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.

  • 17.
    Holm, Maja
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet högskola.
    Weber Falk, Megan
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Sources of social support and its importance for cancer-bereaved spouses and their minor children: A cross-sectional study2022In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 46, no 4, p. 996-1002Article in journal (Refereed)
    Abstract [en]

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

  • 18.
    Holm, Maja
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Årestedt, Kristofer
    Linköpings universitet; Linnéuniversitetet.
    Carlander (Goliath), Ida
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Wengström, Yvonne
    Karolinska Institutet; Örebro universitet.
    Öhlen, Joakim
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Göteborgs universitet.
    Alvariza, Anette
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Institutet; Capio Dalen sjukhus, Stockholm.
    Characteristics of the Family Caregivers Who Did Not Benefit From a Successful Psychoeducational Group Intervention During Palliative Cancer Care: A Prospective Correlational Study.2017In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 40, no 1, p. 76-83Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Although there has been a steady increase in intervention studies aimed toward supporting family caregivers in palliative cancer care, they often report modest effect sizes and there is a lack of knowledge about possible barriers to intervention effectiveness.

    OBJECTIVE: The aim of this study is to explore the characteristics of family caregivers who did not benefit from a successful psychoeducational group intervention compared with the characteristics of those who did.

    INTERVENTION/METHODS: A psychoeducational intervention for family caregivers was delivered at 10 palliative settings in Sweden. Questionnaires were used to collect data at baseline and following the intervention. The Preparedness for Caregiving Scale was the main outcome for the study and was used to decide whether or not the family caregiver had benefited from the intervention (Preparedness for Caregiving Scale difference score ≤ 0 vs ≥ 1).

    RESULTS: A total of 82 family caregivers completed the intervention and follow-up. Caregivers who did not benefit from the intervention had significantly higher ratings of their preparedness and competence for caregiving and their health at baseline compared with the group who benefited. They also experienced lower levels of environmental burden and a trend toward fewer symptoms of depression.

    CONCLUSIONS: Family caregivers who did not benefit from the intervention tended to be less vulnerable at baseline. Hence, the potential to improve their ratings was smaller than for the group who did benefit.

    IMPLICATIONS FOR PRACTICE: Determining family caregivers in cancer and palliative care who are more likely to benefit from an intervention needs to be explored further in research.

  • 19.
    Häger Tibell, Louise
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Universitetssjukhuset.
    Alvariza, Anette
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Stockholms Sjukhem.
    Kreicbergs, Ulrika
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Institutet.
    Wallin, Viktoria
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Steineck, Gunnar
    Karolinska Institutet; Sahlgrenska Universitetssjukhuset.
    Holm, Maja
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet Högskola.
    Web-based support for spouses of patients with life-threatening illness cared for in specialized home care: A feasibility study2022In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, p. 1-9Article in journal (Refereed)
    Abstract [en]

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

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

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

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

  • 20.
    Häger Tibell, Louise
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. 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 University, Department of Health Care Sciences, Palliative Research Centre, PRC. Department of Nursing Science, Sophiahemmet University, Stockholm, Sweden.
    Wallin, Viktoria
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    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 University, Department of Health Care Sciences, Palliative Research Centre, PRC. 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 care2024In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 48, no 4, p. 407-416Article in journal (Refereed)
    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. 

  • 21.
    Norinder, Maria
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliative Care, Dalen Hospital, Stockholm.
    Årestedt, Kristofer
    Faculty of Health and Life Sciences, Linnaeus University, Kalmar; The Research Section, Region Kalmar County.
    Lind, Susanne
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    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.
    Holm, Maja
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Department of Nursing Science, Sophiahemmet University, Stockholm.
    Öhlén, Joakim
    Institute of Health and Care Sciences and the Centre for Person-Centred Care, Sahlgrenska Academy, University of Gothenburg; The Palliative Care Unit, Sahlgrenska University Hospital, Göteborg.
    Benkel, Inger
    The Palliative Care Unit, Sahlgrenska University Hospital, Göteborg; Department of Geriatric Medicine, Sahlgrenska Academy, University of Gothenburg.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliative Care, Dalen Hospital, Stockholm.
    Higher levels of unmet support needs in spouses are associated with poorer quality of life: A descriptive cross-sectional study in the context of palliative home care2021In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 20, no 1, article id 132Article in journal (Refereed)
    Abstract [en]

    Background: Family caregivers often report having unmet support needs when caring for someone with life-threatening illness. They are at risk for psychological distress, adverse physical symptoms and negatively affected quality of life. This study aims to explore associations between family caregivers' support needs and quality of life when caring for a spouse receiving specialized palliative home care.

    Methods: A descriptive cross-sectional design was used: 114 family caregivers completed the Carer Support Needs Assessment Tool (CSNAT) and the Quality of Life in Life-Threatening Illness - Family caregiver version (QOLLTI-F) and 43 of them also answered one open-ended question on thoughts about their situation. Descriptive statistics, multiple linear regression analyses, and qualitative content analysis, were used for analyses.

    Results: Higher levels of unmet support needs were significantly associated with poorer quality of life. All CSNAT support domains were significantly associated with one or more quality of life domains in QOLLTI-F, with the exception of the QoL domain related to distress about the patient condition. However, family caregivers described in the open-ended question that their life was disrupted by the patient's life-threatening illness and its consequences. Family caregivers reported most the need of more support concerning knowing what to expect in the future, which they also described as worries and concerns about what the illness would mean for them and the patient further on. Lowest QoL was reported in relation to the patient's condition, and the family caregiver's own physical and emotional health.

    Conclusion: With a deeper understanding of the complexities of supporting family caregivers in palliative care, healthcare professionals might help to increase family caregivers' QoL by revealing their problems and concerns. Thus, tailored support is needed.

  • 22.
    Rönningås, Ulrika
    et al.
    Karolinska institutet; Sundsvalls sjukhus; Sophiahemmet högskola.
    Holm, Maja
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. 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 study2022In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 31, no 4, article id e13592Article in journal (Refereed)
    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.

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