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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, Dalens sjukhus Stockholm.
    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.
    Henoch, Ingela
    et al.
    Göteborgs universitet.
    Carlander, 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.
    Hagelin, Carina Lundh
    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 2012.2016In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 30, no 1, p. 5-25Article in journal (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.

  • 4.
    Henriksson (Alvariza), Anette
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Hudson, Peter
    Australien.
    Öhlen, Joakim
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Thomas, Kristina
    Australien.
    Holm, Maja
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Carlander (Goliath), Ida
    Karolinska institutet.
    Hagell, Peter
    Högskolan Kristianstad.
    Årestedt, Kristofer
    Linneuniversitetet.
    Use of the Preparedness for Caregiving Scale in Palliative Care: A Rasch Evaluation Study.2015In: 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.

  • 5.
    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)
  • 6.
    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.

  • 7.
    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, ISSN 1472-684X, 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.

  • 8.
    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.

  • 9.
    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)
  • 10.
    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.

  • 11.
    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.

1 - 11 of 11
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