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  • 1. Alvariza, Anette
    et al.
    Holm, Maja
    Sophiahemmet Högskola.
    Benkel, Inger
    Norinder, Maria
    Ewing, Gail
    Grande, Gunn
    Håkanson, Cecilia
    Sophiahemmet Högskola.
    Öhlen, Joakim
    Årestedt, Kristofer
    A person-centred approach in nursing: Validity and reliability of the Carer Support Needs Assessment Tool2018Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 35, s. 1-8, artikel-id S1462-3889(18)30058-9Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PURPOSE: The Carer Support Needs Assessment Tool (CSNAT) was developed for use among family caregivers in palliative care for assessment of their support needs. The purpose of this study was to translate and evaluate the validity and reliability of the CSNAT in a sample of Swedish family caregivers and nurses in a palliative care context.

    METHODS: Data for this validation study was collected during 2016 in the context of palliative home care in two larger Swedish cities. The study was conducted in three stages to reach conceptual, semantic, operational and measurement equivalence between the original UK version and the Swedish version. Stage I consisted of translation to Swedish. In Stage II, cognitive interviews were performed with 8 family caregivers and 10 nurses. Data were analyzed based on relevance, clarity and sensitivity. In Stage III, the CSNAT and related self-rating measures (caregiver burden, preparedness for caregiving and quality of life) were completed by 118 family caregivers. Data quality, construct validity and test-retest reliability were evaluated.

    RESULTS: The CSNAT items were considered relevant and useful to identify areas of support needs. The Swedish CSNAT showed sound psychometric properties with satisfactory data quality and few problems with missing data across items (1.8%-6.1%). All items except one correlated as expected (rho>0.3) with caregiver burden, supporting construct validity. All items had satisfactory test-retest reliability (κw=0.45-0.75).

    CONCLUSIONS: This study further adds to the validity of the CSNAT and shows in addition that it is reliable and stable for use among family caregivers in palliative care.

  • 2.
    Holm, Maja
    et al.
    Sophiahemmet Högskola.
    Årestedt, Kristofer
    Alvariza, Anette
    Associations between predeath and postdeath grief in family caregivers in palliative home care2019Ingår i: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 22, nr 12, s. 1530-1535Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: Family caregivers in palliative care may be placed in a complicated emotional situation wherein they suffer the risk of grief reactions both pre- and postbereavement and may also experience symptoms of anxiety and depression.

    Objective: The aim of this study was to investigate (1) associations between predeath grief and postdeath grief and (2) whether these are moderated by symptoms of anxiety and depression.

    Design: This was a prospective correlational study. Linear regression analysis in three blocks was used to investigate associations between pre- and postdeath grief and moderation effects of anxiety and depression. Postdeath grief was used as the outcome variable and predeath grief was used as the explanatory variable in block I. The moderator variables, symptoms of anxiety, and symptoms of depression were added as covariates in block II. A multiplicative interaction term between predeath grief and anxiety/depression was added to the model in block III.

    Setting/Subjects: Data were collected at 10 facilities specialized in palliative home care where health care professionals provided advanced care to patients with various diagnoses in their own homes.

    Measurements: The anticipatory grief scale and the Texas Revised Inventory of Grief were used to measure pre- and postdeath grief, respectively. To measure symptoms of anxiety and depression, the Hospital Anxiety and Depression scale was used.

    Results: A total of 128 family caregivers were included. Significant associations were found between predeath grief and postdeath grief and this association remained when controlled against symptoms of anxiety or depression. We found no moderation effect of anxiety or depression on the association between pre- and postdeath grief.

    Conclusions: In conclusion, grief before and after an expected death can be regarded as parts of the same grief process. Hence, knowing the intensity of predeath grief could be a way to predict the levels of postdeath grief.

  • 3. Henoch, Ingela
    et al.
    Carlander, Ida
    Holm, Maja
    James, Inger
    Kenne Sarenmalm, Elisabeth
    Lundh Hagelin, Carina
    Sophiahemmet Högskola.
    Lind, Susanne
    Sandgren, Anna
    Öhlén, Joakim
    Palliative Care Research - A Systematic Review of foci, designs and methods of research conducted in Sweden between 2007 and 20122016Ingår i: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 30, nr 1, s. 5-25Artikel, forskningsöversikt (Refereegranskat)
    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.

  • 4. Rönningås, Ulrika
    et al.
    Fransson, Per
    Holm, Maja
    Sophiahemmet Högskola.
    Wennman-Larsen, Agneta
    Sophiahemmet Högskola.
    Prostate-specific antigen (PSA) and distress: - a cross-sectional nationwide survey in men with prostate cancer in Sweden2019Ingår i: BMC Urology, ISSN 1471-2490, E-ISSN 1471-2490, Vol. 19, nr 1, artikel-id 66Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: The prostate-specific antigen (PSA) -value is often used during the prostate cancer trajectory as a marker of progression or response to treatment. Concerns about PSA-values are often expressed by patients in clinical situations. Today there is a lack of larger studies that have investigated the association between PSA-value and distress. The aim was to investigate the association between PSA-values and distress adjusted for sociodemographic factors, hormonal therapy and quality of life (QoL), among men with prostate cancer.

    METHODS: In this cross-sectional survey of 3165 men with prostate cancer, members of the Swedish Prostate Cancer Federation, answered questions about sociodemographic factors, PSA, distress, QoL and treatments. Descriptive statistics, and bivariate and multivariable analyses were performed. The result was presented based on four PSA-value groups: 0-19, 20-99, 100-999, and ≥ 1000 ng/ml.

    RESULTS: Of the men, 53% experienced distress. An association between distress and PSA-values was found where higher PSA-values were associated with higher OR:s for experiencing distress in the different PSA-groups: 0-19 ng/ml (ref 1), 20-99 ng/ml (OR 1.25, 95% CI 1.01-1.55), 100-999 ng/ml (OR 1.47, 95% CI 1.12-1.94), ≥1000 ng/ml (OR 1.77, 95% CI 1.11-2.85). These associations were adjusted for sociodemographic factors and hormonal therapy. In the multivariable analyses, beside PSA-values, higher levels of distress were associated with being without partner or hormonal therapy. When adding QoL in the multivariable analysis, the association between PSA and distress did not remain significant.

    CONCLUSION: These results indicate that the PSA-values are associated with distress, especially for those with higher values. However, to be able to support these men, continued research is needed to gain more knowledge about the mechanisms behind the association between emotional distress and PSA-values.

  • 5.
    Holm, Maja
    et al.
    Sophiahemmet Högskola.
    Alvariza, Anette
    Fürst, Carl-Johan
    Öhlen, Joakim
    Årestedt, Kristofer
    Psychometric evaluation of the anticipatory grief scale in a sample of family caregivers in the context of palliative care2019Ingår i: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 17, nr 1, artikel-id 42Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    INTRODUCTION: In palliative care, family caregivers are often faced with experiences of grief in anticipation of the loss of a close person. An instrument designed to measure this form of grief is the Anticipatory Grief Scale, which includes 27 items and has been used in several studies in various contexts. However, the instrument has not been validated.

    AIM: The aim was to evaluate the psychometric properties, focusing on the factor structure, of the Anticipatory Grief Scale in a sample of family caregivers in palliative care.

    METHODS: The study had a cross-sectional design. Data were collected from an intervention study in palliative home care that took place between 2013 and 2014. In total, 270 family caregivers in palliative care completed a baseline questionnaire, including the Anticipatory Grief Scale. The factor structure of the scale was evaluated using exploratory factor analysis.

    RESULTS: The initial factor analysis suggested a four-factor solution, but, due to weak communalities, extensive crossloadings, and item inconsistencies, the model was problematic. Further analysis supported that the scale should be reduced to 13 items and two factors. The two subscales captured the behavioral and emotional reactions of grief in family caregivers in palliative care and were named Behavioral reactions and Emotional reactions. This modified version will hereafter be named AGS-13.

    CONCLUSIONS: This validation study of the Anticipatory Grief Scale resulted in a revised two-factor model, AGS-13, that appears to be promising for use in palliative care but needs to be tested further.

  • 6.
    Holm, Maja
    et al.
    Sophiahemmet Högskola.
    Alvariza, Anette
    Fürst, Carl-Johan
    Öhlen, Joakim
    Årestedt, Kristofer
    Psychometric evaluation of the Texas revised inventory of grief in a sample of bereaved family caregivers2018Ingår i: Research in Nursing & Health, ISSN 0160-6891, E-ISSN 1098-240X, Vol. 41, nr 5, s. 480-488Artikel i tidskrift (Refereegranskat)
    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.

  • 7.
    Holm, Maja
    et al.
    Sophiahemmet Högskola.
    Doveson, Sandra
    Sophiahemmet Högskola.
    Lindqvist, Olav
    Wennman-Larsen, Agneta
    Sophiahemmet Högskola.
    Fransson, Per
    Quality of life in men with metastatic prostate cancer in their final years before death: a retrospective analysis of prospective data2018Ingår i: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 17, nr 1, artikel-id 126Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: Quality of Life (QoL) is the most important outcome for patients in palliative care along with symptom alleviation. Metastatic prostate cancer (mPC) is a life-threatening illness, and hence, a palliative care approach may be beneficial to this group. Over time, new life-prolonging treatments have been developed for men with mPC, but the possibility to prolong life should also be balanced against the men's QoL, particularly because there are side effects involved with these treatments. The aim of this study was to evaluate QoL, functioning and symptoms in men with mPC during their final years before death.

    METHODS: This is a retrospective analysis of data from a long-term prospective study of men (n = 3885) with prostate cancer from two regions in Sweden. Validated questionnaires asking about participants' QoL, functioning and symptoms were used to collect data. From the overall study, 190 men with mPC were identified. They were stratified into three groups, depending on the amount of time that had passed between the last questionnaire and their death; < 6 months, 6-18 months and > 18 months before death.

    RESULTS: Men with mPC generally rated their QoL poorly compared to established clinically significant threshold values. The group of men that were < 6 months before death rated their QoL, functioning and several symptoms significantly worse than the two other groups. Men that died after the year 2006 reported lower QoL and functioning and more pain and fatigue than those who died before 2006.

    CONCLUSION: The results in this study indicate that men with mPC have unmet needs with regards to QoL and symptoms. A palliative care approach, alongside possible life-prolonging treatments, that focuses on QoL and symptom relief, may serve as an important frame to give the best support to these men in their final years of life.

  • 8.
    Holm, Maja
    et al.
    Sophiahemmet Högskola.
    Alvariza, Anette
    Fürst, Carl-Johan
    Wengström, Yvonne
    Årestedt, Kristofer
    Öhlen, Joakim
    Goliath, Ida
    Recruiting participants to a randomized controlled trial testing an intervention in palliative cancer care - The perspectives of health care professionals2017Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 31, s. 6-11, artikel-id S1462-3889(17)30205-3Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PURPOSE: The recruitment of participants to randomized controlled trials (RCTs) in palliative cancer care by health care professionals is often unsuccessful, which could result in failure to achieve study power. The purpose of this paper is to describe how health care professionals experienced recruiting patients and family caregivers to an RCT in palliative cancer care.

    METHODS: The study had a qualitative explorative design. Ten palliative home care settings were involved in the RCT and data were generated through focus group discussions and interviews with health care professionals who were responsible for the recruitment. The transcripts were analyzed with interpretive descriptive principles.

    RESULTS: The experiences of the health care professionals reveal that communicating the RCT-design to patients and family caregivers was a challenging part of the recruitment but was considered a process of learning over time. The delicate situation that participants were living under added to the challenge and health care professionals believed that the randomized design was contrary to their normal approach to always offer the best possible support.

    CONCLUSIONS: The results contribute valuable knowledge for future trials in palliative cancer care. To promote successful recruitment, health care professionals may be in need of more training to improve their communication skills and it may be necessary to consider other research designs than the RCT.

  • 9.
    Holm, Maja
    et al.
    Sophiahemmet Högskola.
    Årestedt, Kristofer
    Öhlen, Joakim
    Alvariza, Anette
    Variations in grief, anxiety, depression, and health among family caregivers before and after the death of a close person in the context of palliative home care2019Ingår i: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, s. 1-9Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    This article investigates longitudinal variations in grief, self-rated health, and symptoms of anxiety and depression among family caregivers in palliative care. Data were taken from a randomized psycho-educational intervention trial and were collected at four time-points; at baseline, upon completion, 2 months later, and 6 months after the patient's death. In total, 117 family caregivers completed all questionnaires. The participants' grief was stable across the measurements, while anxiety, depression, and health varied significantly (p < 0.05). No significant differences were found between the intervention or control group. In conclusion, grief emerged as a constant phenomenon, distinct from symptoms of anxiety and depression.

  • 10.
    Holm, Maja
    et al.
    Sophiahemmet Högskola.
    Årestedt, K
    Öhlen, J
    Alvariza, A
    Variations in grief, anxiety, depression and health among family caregivers before and after the death of a close person in the context of palliative home care2019Konferensbidrag (Övrigt vetenskapligt)
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