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  • 1.
    Alvariza, Anette
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Capio Palliativ vård Dalen.
    Holm, Maja
    Sophiahemmet högskola.
    Benkel, Inger
    Göteborgs universitet.
    Norinder, Maria
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Ewing, Gail
    Storbritannien.
    Grande, Gunn
    Storbritannien.
    Håkanson, Cecilia
    Göteborgs universitet.
    Öhlen, Joakim
    Göteborgs universitet.
    Årestedt, Kristofer
    Linnéuniversitetet, Landstinget i Kalmar län.
    A person-centred approach in nursing: Validity and reliability of the Carer Support Needs Assessment Tool.2018In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 35, p. 1-8, article id S1462-3889(18)30058-9Article in journal (Refereed)
    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.
    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.
    Alvariza, Anette
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Lövgren, Malin
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Bylund-Grenklo, Tove
    Karolinska institutet.
    Hakola, Pia
    Stockholms Sjukhem.
    Fürst, Carl Johan
    Lunds universitet, Region Skåne.
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    How to support teenagers who are losing a parent to cancer: Bereaved young adults' advice to healthcare professionals-A nationwide survey.2016In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 15, no 3, p. 313-319Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The loss of a parent to cancer is considered one of the most traumatic events a teenager can experience. Studies have shown that teenagers, from the time of diagnosis, are already extremely worried about the consequences of a parent's cancer but tend to be left to manage these concerns on their own. The present study aimed to explore young adults' advice to healthcare professionals on how to support teenagers who are losing a parent to cancer.

    METHODS: This work derives from a Swedish nationwide survey and employs a qualitative approach with a descriptive/interpretive design to obtain answers to an open-ended question concerning advice to healthcare professionals. Of the 851 eligible young adults who had lost a parent to cancer when they were 13-16 years of age within the previous 6 to 9 years, 622 participated in our survey (response rate = 73%). Of these 622 young adults, 481 responded to the open-ended question about what advice to give healthcare professionals.

    RESULTS: Four themes emerged: (1) to be seen and acknowledged; (2) to understand and prepare for illness, treatment, and the impending death; (3) to spend time with the ill parent, and (4) to receive support tailored to the individual teenager's needs.

    SIGNIFICANCE OF RESULTS: This nationwide study contributes hands-on suggestions to healthcare staff regarding attitudes, communication, and support from the perspective of young adults who, in their teenage years, lost a parent to cancer. Teenagers may feel better supported during a parent's illness if healthcare professionals take this manageable advice forward into practice and see each teenager as individuals; explain the disease, its treatments, and consequences; encourage teenagers to spend time with their ill parent; and recommend sources of support.

  • 4.
    Alvariza, Anette
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. CapioPalliativ vård, Dalen sjukhus, Stockholm.
    Årestedt, Kristofer
    Linnéuniversitetet, Länssjukhuset i Kalmar.
    Boman, Kurt
    Umeå universitet.
    Brännström, Margareta
    Umeå universitet.
    Family members' experiences of integrated palliative advanced home and heart failure care: A qualitative study of the PREFER intervention.2017In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Chronic heart failure is a disease with high morbidity and symptom burden for patients, and it also places great demands on family members. Patients with heart failure should have access to palliative care for the purpose of improving quality of life for both patients and their families. In the PREFER randomized controlled intervention, patients with New York Heart Association classes III-IV heart failure received person-centered care with a multidisciplinary approach involving collaboration between specialists in palliative and heart failure care. The aim of the present study was to describe family members' experiences of the intervention, which integrated palliative advanced home and heart failure care.

    METHOD: This study had a qualitative descriptive design based on family member interviews. Altogether, 14 family members participated in semistructured interviews for evaluation after intervention completion. The data were analyzed by means of content analysis.

    RESULTS: Family members expressed gratitude and happiness after witnessing the patient feeling better due to symptom relief and empowerment. They also felt relieved and less worried, as they were reassured that the patient was being cared for properly and that their own responsibility for care was shared with healthcare professionals. However, some family members also felt as though they were living in the shadow of severe illness, without receiving any support for themselves.

    SIGNIFICANCE OF RESULTS: Several benefits were found for family members from the PREFER intervention, and our results indicate the significance of integrated palliative advanced home and heart failure care. However, in order to improve this intervention, psychosocial professionals should be included on the intervention team and should contribute by paying closer attention and providing targeted support for family members.

  • 5.
    Axelsson, Lena
    et al.
    Linnéuniversitetet, Sophiahemmet högskola.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Lindberg, Jenny
    Lunds universitet, Skånes universitetssjukhus.
    Öhlén, Joakim
    Göteborgs universitet.
    Håkanson, Cecilia
    Sophiahemmet högskola.
    Reimertz, Helene
    Region Kronoberg.
    Fürst, Carl-Johan
    Lunds universitet, Region Skåne.
    Årestedt, Kristofer
    Linnéuniversitetet, Länssjukhuset i Kalmar.
    Unmet Palliative Care Needs Among Patients With End-Stage Kidney Disease: A National Registry Study About the Last Week of Life.2018In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 55, no 2, p. 236-244, article id S0885-3924(17)30494-3Article in journal (Refereed)
    Abstract [en]

    CONTEXT: End-stage kidney disease (ESKD) is characterized by high physical and psychological burden, and therefore, more knowledge about the palliative care provided close to death is needed.

    OBJECTIVES: To describe symptom prevalence, relief, and management during the last week of life, as well as end-of-life communication, in patients with ESKD.

    METHODS: This study was based on data from the Swedish Register of Palliative Care. Patients aged 18 or older who died from a chronic kidney disease, with or without dialysis treatment (International Classification of Diseases, Tenth Revision, Sweden; N18.5 or N18.9), during 2011 and 2012 were selected.

    RESULTS: About 472 patients were included. Of six predefined symptoms, pain was the most prevalent (69%), followed by respiratory secretion (46%), anxiety (41%), confusion (30%), shortness of breath (22%), and nausea (17%). Of patients with pain and/or anxiety, 32% and 44%, respectively, were only partly relieved or not relieved at all. Of patients with the other symptoms, a majority (55%-84%) were partly relieved or not relieved at all. End-of-life discussions were reported in 41% of patients and 71% of families. A minority died in specialized palliative care: 8% in hospice/inpatient palliative care and 5% in palliative home care. Of all patients, 19% died alone. Bereavement support was offered to 38% of families.

    CONCLUSION: Even if death is expected, most patients dying with ESKD had unmet palliative care needs regarding symptom management, advance care planning, and bereavement support.

  • 6.
    Eklund, Rakel
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    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 Palliative vård, Dalen sjukhus, Stockholm..
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    The family talk intervention in palliative care: a study protocol2018In: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 17, no 35Article in journal (Refereed)
    Abstract [en]

    Background: In palliative care contexts, support programs for families with a severely ill parent and minor children are few, and even fewer have been evaluated scientifically. The aims of this study are to examine feasibility and potential effects of a modified version of the Family Talk Intervention (FTI) in palliative care.

    Methods: This ongoing family-centered intervention has a quasi-experimental design comparing one intervention and one comparison group. The intervention includes severely ill parents who have minor children (aged 6–19 yrs) and are receiving advanced homecare in Stockholm, Sweden between March 2017 and March 2018. The main goal of the FTI is to support family communication through psycho-education and narrative theory. The modified FTI consists of six meetings with family members, and is held by two interventionists. Each family sets up needs-based goals for the intervention. For evaluation purposes, data are collected by questionnaire before the intervention, within two months after baseline, and one year after baseline. Interviews will be conducted within two months after FTI is completed. Notes taken by one of the interventionists during the family meetings will also be used. Questionnaire data analysis will focus on patterns over time using descriptive statistics. For interview data and notes, content analysis will be used.

    Discussion: This study will add knowledge about palliative care for parents who have minor children. It will contribute by testing use of FTI in palliative care, and point out directions for future evaluations of FTI in palliative care settings.

  • 7.
    Ewertzon, Mats
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen, Stockholm.
    Winnberg, Elisabeth
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Leksell, Janeth
    Högskolan Dalarna, Uppsala universitet.
    Andershed, Birgitta
    Norge.
    Goliath, Ida
    Karolinska institutet, Ersta sjukhus.
    Momeni, Pardis
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Kneck, Åsa
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Skott, Maria
    Karolinska institutet, Norra Stockholms psykiatri Stockholms läns landsting.
    Årestedt, Kristofer
    Linnéuniversitetet, Linköpings universitet, Länssjukhuset i Kalmar.
    Adaptation and evaluation of the Family Involvement and Alienation Questionnaire for use in the care of older people, psychiatric care, palliative care and diabetes care.2018In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648Article in journal (Refereed)
    Abstract [en]

    AIM: To adapt the Family Involvement and Alienation Questionnaire for use in the care of older people, psychiatric care, palliative care and diabetes care and to evaluate its validity and reliability.

    BACKGROUND: Involvement in the professional care has proven to be important for family members. However, they have described feelings of alienation in relation to how they experienced the professionals' approach. To explore this issue, a broad instrument that can be used in different care contexts is needed.

    DESIGN: A psychometric evaluation study, with a cross-sectional design.

    METHOD: The content validity of the Family Involvement and Alienation Questionnaire was evaluated during 2014 by cognitive interviews with 15 family members to adults in different care contexts. Psychometric evaluation was then conducted (2015-2016). A sample of 325 family members participated, 103 of whom in a test-retest evaluation. Both parametric and non-parametric methods were used.

    RESULTS: The content validity revealed that the questionnaire was generally understood and considered to be relevant and retrievable by family members in the contexts of the care of older people, psychiatric care, palliative care and diabetes care. Furthermore, the Family Involvement and Alienation Questionnaire (Revised), demonstrated satisfactory psychometric properties in terms of data quality, homogeneity, unidimensionality (factor structure), internal consistency and test-retest reliability.

    CONCLUSION: The study provides evidence that the Family Involvement and Alienation Questionnaire (Revised) is reliable and valid for use in further research and in quality assessment in the contexts of the care of older people, psychiatric care, palliative care and diabetes care. This article is protected by copyright. All rights reserved.

  • 8.
    Hagell, Peter
    et al.
    Högskolan Kristianstad.
    Alvariza, Anette
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Westergren, Albert
    Högskolan Kristianstad.
    Årestedt, Kristofer
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Linnéuniversitetet, Länssjukhuset i Kalmar.
    Assessment of burden among family caregivers of people with Parkinson's disease using the Zarit Burden Interview.2017In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 53, no 2, p. 272-278Article in journal (Refereed)
    Abstract [en]

    CONTEXT: Previous studies have supported the psychometric properties of the 22-item Zarit Burden Interview (ZBI-22) scale among family caregivers of people with various disorders, including Parkinson´s disease (PD). However, its short-forms have not been psychometrically tested among PD family caregivers, and available psychometric analyses have not accounted for the ordinal nature of item-level data.

    OBJECTIVES: To assess the psychometric properties of the ZBI-22 and its short forms among family caregivers of people with PD, while taking account for the ordinal nature of data.

    METHODS: Cross-sectional postal survey ZBI-22 data from 66 family caregiver members (59% women; mean age, 69.6 years) of a local Swedish PD society branch were analysed according to classical test theory methods based on polychoric/polyserial correlations.

    RESULTS: Missing item responses were ≤5%. Corrected item-total correlations were ≥0.42 and floor-/ceiling effects were <20%, besides for the briefest (4- and 1-item) short-forms (20% and 40% floor effects, respectively). Reliability was good for all scales (ordinal alpha, 0.89-0.95). External construct validity was in general accordance with a priori expectations. Short-forms demonstrated good criterion-related validity (rs 0.87-0.99) and discriminative ability (AUC, 0.91-0.98) relative to the full ZBI-22.

    CONCLUSION: This study provides support for the reliability and validity of the ZBI-22 and its various short forms for use among PD family caregivers. In studies where caregiver burden is a central outcome, either ZBI-22 or -12 is suggested for use; other short-forms can be used when caregiver burden is of less central focus or for clinical screening.

  • 9.
    Henriksson (Alvariza), Anette
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    A support Group programme family members of persons with life-threatening illness.2011Conference paper (Refereed)
  • 10.
    Henriksson (Alvariza), Anette
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    A support group programme for family members: an intervention during ongoing palliative care2012Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Family members are central in providing care for patients with lifethreatening illness, but they often experience a lack of necessary preparation and knowledge, with a need for information and psychosocial support. The overall aim of this thesis was to investigate participant’s experiences as well as effects of a support group programme for family members of patients with life-threatening illness during ongoing palliative care.

    Methods: A mixed method design was used. Study I was retrospective descriptive and used a phenomenological method to analyse 10 face-to-face interviews about experiences of participating in the programme. Study II was retrospective descriptive and used qualitative content analysis to analyse 29 telephone interviews about experiences of the programme design. Study III was correlational and used a confirmatory factor analysis to psychometrically evaluate the preparedness for caregiving scale(PCS), caregiver competence scale(CCS) and rewards of caregiving scale(RCS) in 124 family members. Study IV was prospective quasi-experimental and used interferential statistics to investigate effects of the programme, assessing preparedness, competence, rewards, anxiety, depression, hope and health in 125 family members.

    Results: The main experiences of participation in the programme were; a sense of safety and belonging, confirmation, insight into the gravity of the illness, and a moment of rest. The programme was experienced as covering topics of interest, structured to make participants feel invited by the caring team and using an open approach that fostered a warm atmosphere. The Swedish versions of PCS, CCS and RCS were shown to be valid and reliable. Family members who participated in the programme significantly increased in preparedness, competence and rewards in relation to caregiving. No significant changes were shown for anxiety, depression, hope and health.

    Clinical implications: The results should provide encouragement in the challenging work to develop and deliverer interventions, with the explicit purpose of supporting family members in palliative care.

  • 11.
    Henriksson (Alvariza), Anette
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    A support Group Programme for family members of persons with life-threatening illness2012Conference paper (Refereed)
  • 12.
    Henriksson (Alvariza), Anette
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    A support Group Programme for family members of persons with life-threatening illness.2010Conference paper (Refereed)
  • 13.
    Henriksson (Alvariza), Anette
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    A support group programme for relatives during the late palliative phase.2007Conference paper (Refereed)
  • 14.
    Henriksson (Alvariza), Anette
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    A supportgroup programme for family members during the late palliative phase.2008Conference paper (Refereed)
  • 15.
    Henriksson (Alvariza), Anette
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Effects of a support group programme for family caregivers2013Conference paper (Refereed)
  • 16.
    Henriksson (Alvariza), Anette
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Förberedelse för att vårda: en intervention för närstående under pågående palliativ vård2013In: Omvårdnad på avancerad nivå: kärnkompetenser inom sjuksköterskans specialistområden / [ed] Anna-Karin Edberg, Anna Ehrenberg, Febe Friberg, Lars Wallin, Helle Wijk, Joakim Öhlén, Lund: Studentlitteratur AB, 2013, 1, p. webb-Chapter in book (Other academic)
    Abstract [sv]

    Närstående har i dag en betydande roll i vårdandet och omhändertagandet av svårt sjuka/döende personer. För många är det en självklarhet att inta rollen som vårdare medan andra kanske inte ser sig ha något val. Ofta är närstående otillräckligt förberedda för att vårda och hantera den nya situationen, vilket kan medföra negativa konsekvenser. Det är därför viktigt med information och stöd i olika former till närstående under vårdtiden. Den här artikeln belyser närståendes situation och stöd till närstående. Artikeln beskriver ett särskilt stödprogram för närstående under pågående palliativ vård, närståendes erfarenheter av programmet och effekter av programmet (Henriksson 2012).

  • 17.
    Henriksson (Alvariza), Anette
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Stöd för närstående till personer med livshotande sjukdom.2012Conference paper (Other academic)
  • 18.
    Henriksson (Alvariza), Anette
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Stödinterventioner till närstående under pågående vård2013In: Palliativ vård: Begrepp och perspektiv i teori och praktik / [ed] Birgitta Andershed, Britt-Marie Ternestedt, Cecilia Håkansson, Lund: Studentlitteratur, 2013Chapter in book (Other academic)
  • 19.
    Henriksson (Alvariza), Anette
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Support for family members in palliative care2009Conference paper (Refereed)
  • 20.
    Henriksson (Alvariza), Anette
    et al.
    Ersta Sköndal University College, Department of palliative care research.
    Andershed, Birgitta
    Ersta Sköndal University College, Department of palliative care research.
    A support group programme for relatives during the late palliative phase.2007In: International Journal of Palliative Nursing, ISSN 1357-6321, E-ISSN 2052-286X, Vol. 13, no 4, p. 175-83Article in journal (Refereed)
    Abstract [en]

    This study describes an intervention where relatives were invited to take part in a support group programme during the late palliative phase of their family member. The purpose was to describe their experiences of the support group programme and the subsequent impact on their lives as relatives of a terminally ill person. Qualitative interviews were chosen as the data collection method. The analysis was inspired by the phenomenological method as described by Giorgi (1989). The relatives' experiences were categorised into six key constituents: confirmation; insight into the gravity of the illness; sense of belonging created by similar experiences; participation in the care system; being able to rest; and strength to provide support for the patient. These six constituents resulted in a sense of safety in relation to the patient, the illness, the nursing staff and the care unit. The study's findings show that interventions of this kind may be integral to the relatives' ability to handle their situation when caring for a terminally ill family member.

  • 21.
    Henriksson (Alvariza), Anette
    et al.
    Örebro universitet.
    Andershed, Birgitta
    Ersta Sköndal University College, Enheten för forskning i palliativ vård. Gjövik University, Norway.
    Benzein, Eva
    Ersta Sköndal University College, Enheten för forskning i palliativ vård. Linnéuniversitetet.
    Årestedt, Kristoffer
    Linnéuniversitetet, Linköpings universitet.
    Adaptation and psychometric evaluation of the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale in a sample of Swedish family members of patients with life-threatening illness2012In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 26, no 7, p. 930-938Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Family members often take on many caring responsibilities, with complex issues and challenges to consider. Feelings of preparedness, competence and reward are identified as concepts that may protect caregiver wellbeing and decrease negative outcomes related to caregiving.

    AIM: This study aimed to translate, adapt and psychometrically evaluate the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale in Swedish family members of patients with life threatening illness.

    DESIGN: Correlational.

    SETTING/PARTICIPANTS: The study took place in four settings including advanced palliative care. The scales were tested in a sample of 125 family members of persons with life-threatening illness. All three scales were tested in relation to distribution of item and scale scores, missing data patterns, dimensionality, convergent validity and reliability.

    RESULTS: The results in this study indicate that the Swedish versions of The Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale are valid, reliable and user-friendly scales. Confirmatory factor analysis showed that the scales were unidimensional and all demonstrated Cronbach's alpha values of ≥0.9.

    CONCLUSIONS: As a result of this study it is anticipated that the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale could provide a basis for collaborative research between different countries and make international studies more comparable and generalizable despite differences in language and culture.

  • 22.
    Henriksson (Alvariza), Anette
    et al.
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Benzein, Eva
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Andershed, Birgitta
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Meeting the needs of family members of persons with life threatening illness: a support group programme during ongoing palliative care.2011In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 9, no 3, p. 263-271Article in journal (Refereed)
  • 23.
    Henriksson (Alvariza), Anette
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Carlander (Goliath), Ida
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Årestedt, Kristofer
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Feelings of Reward among Family Caregivers during Ongoing Palliative Care2014In: Palliative Medicine / [ed] Catherine Walshe, Sage Publications, 2014, p. 613-614Conference paper (Refereed)
  • 24.
    Henriksson (Alvariza), Anette
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Carlander (Goliath), Ida
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Årestedt, Kristofer
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Feelings of rewards among family caregivers during ongoing palliative care2015In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 6, p. 1509-1517Article in journal (Refereed)
    Abstract [en]

    Objectives: Palliative family caregivers appear to experience the rewards of caregiving concurrent with burdens and negative feelings. Relatively few studies have attended to the positive and rewarding aspects in palliative family caregiving. In addition, most studies on rewards are retrospective and examine the experiences of bereaved family caregivers. The present study aimed at describing feelings of reward among family caregivers during ongoing palliative care. A further aim was to compare the experience of rewards in relation to sex and age. Methods: The sample consisted of 125 family caregivers and took place in three specialist palliative care units and one hematology unit. Participants answered a questionnaire including demographic background questions and the Rewards of Caregiving Scale (RCS). Descriptive statistics were employed to describe characteristics of the participants and the level of rewards. A Mann-Whitney U test was used to compare differences between groups of different sex and age. Results: Palliative family caregivers reported general high levels of reward. The greatest source of rewards involved feelings of being helpful to patients. This was closely followed by giving something to patients that brought them happiness and being there for them. The smallest sources of rewards were related to personal growth, self-satisfaction, and personal meaning. There was also an association between rewards and age but not between men and women. Significance of results: Family caregivers experienced the rewards of caregiving during ongoing palliative care despite their unique and stressful situation. Feelings of reward seem to be about handling a situation in a satisfying way, feeling competent and confident to take care of the patient and thereby feeling proud. Support could preferably be designed to improve a family caregiver's ability to care and to facilitate the positive aspects and rewards of caregiving and focus on strengths and resources.

  • 25.
    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.

  • 26.
    Henriksson (Alvariza), Anette
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Årestedt, Kristofer
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Exploring factors and caregiver outcomes associated with feelings of preparedness for caregiving in family caregivers in palliative care: A correlational, cross-sectional study2013In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 27, no 7, p. 639-646Article in journal (Refereed)
    Abstract [en]

    Background: Family caregivers in palliative care often report feeling insufficiently prepared to handle the caregiver role. Preparedness has been confirmed as a variable that may actually protect family caregiver well-being. Preparedness refers to how ready family caregivers perceive they are for the tasks and demands in the caregiving role.

    Aim: The aim of this study was to explore factors associated with preparedness and to further investigate whether preparedness is associated with caregiver outcomes.

    Design: This was a correlational study using a cross-sectional design.

    Setting/participants: The study took place in three specialist palliative care units and one haematology unit. A total of 125 family caregivers of patients with life-threatening illness participated.

    Result: Preparedness was significantly associated with higher levels of hope and reward and with a lower level of anxiety. In contrast, preparedness was not associated with depression or health. Being female and cohabiting with the patient were significantly associated with a higher level of preparedness. The relationship to the patient was significantly associated with preparedness, while social support, place of care, time since diagnosis and age of the patients showed no association.

    Conclusion:Feelings of preparedness seem to be important for how family caregivers experience the unique situation when caring for a patient who is severely ill and close to death. Our findings support the inclusion of preparedness in support models for family caregivers in palliative care. Psycho-educational interventions could preferably be designed aiming to increase family caregiver’s preparedness to care, including practical care, communication and emotional support.

  • 27.
    Henriksson (Alvariza), Anette
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Årestedt, Kristofer
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Exploring factors and caregiver outcomes associated with feelings of preparedness for caregiving in family caregivers in palliative care: A cross-sectional study2013Conference paper (Refereed)
  • 28.
    Henriksson (Alvariza), Anette
    et al.
    Örebro universitet.
    Årestedt, Kristofer
    Linköping universitet, Linne universitet.
    Benzein, Eva
    Ersta Sköndal University College, Palliative Research Centre, PRC. Linnéuniversitetet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet, Stockholms sjukhem.
    Andershed, Birgitta
    Ersta Sköndal University College, Palliative Research Centre, PRC. Gjøvik University College, Norway.
    Effects of a support group programme for patients with life-threatening illness during ongoing palliative care2013In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 27, no 3, p. 257-264Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Health care systems in many countries are moving towards outpatient care in which family members are central in providing care for patients with life-threatening illness. Several studies show that family members report a lack of preparation, knowledge and the ability to handle the caregiver role, and a need for information and psychosocial support. 

    AIM: The aim was to investigate the effects of a support group programme for family members of patients with life-threatening illness during ongoing palliative care.

    DESIGN: A prospective quasi-experimental design, including an intervention group and a comparison group, was used.

    SETTINGS/PARTICIPANTS: A support group programme was offered to family members during ongoing palliative care at three intervention settings: two specialist palliative care units and one haematology unit. A fourth setting, a specialist palliative care unit, was used for comparisons.

    RESULTS: Family members taking part in the support group programme significantly increased their perceptions of preparedness for caregiving, competence for caregiving, and rewards of caregiving. Hope, anxiety, depression symptoms and health showed no significant changes.

    CONCLUSIONS: The intervention, including a support group programme delivered to family members of patients with life-threatening illness during ongoing palliative care, proved to be effective in certain domains of caregiving. No negative outcomes were detected. The results indicate that this intervention could be implemented and delivered to family members during ongoing palliative care.

  • 29.
    Holm, Maja
    et al.
    Sophiahemmet högskola.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio palliativ vård Dalens sjukhus Stockholm, Karolinska institutet.
    Fürst, Carl-Johan
    Lunds universitet.
    Wengström, Yvonne
    Karolinska institutet.
    Årestedt, Kristofer
    Linnéuniversitetet.
    Öhlen, Joakim
    Göteborgs universitet.
    Goliath, Ida
    Karolinska institutet.
    Recruiting participants to a randomized controlled trial testing an intervention in palliative cancer care - The perspectives of health care professionals.2017In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 31, p. 6-11, article id S1462-3889(17)30205-3Article in journal (Refereed)
    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.

  • 30.
    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.

  • 31.
    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.

  • 32.
    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)
  • 33.
    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)
  • 34.
    Holm, Maja
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Årestedt, Kristofer
    Linnéuniversitetet.
    Carlander (Goliath), Ida
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Fürst, Carl-Johan
    Lund universitet.
    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 Palliativ vård Dalen, Stockholm.
    Short-term and long-term effects of a psycho-educational group intervention for family caregivers in palliative home care - results from a randomized control trial.2016In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 25, no 7, p. 795-802Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Family caregivers in cancer and palliative care often face heavy responsibilities and feel insufficiently prepared for the situation as caregivers. This study evaluates short-term and long-term effects of a psycho-educational group intervention aiming to increase preparedness for family caregiving in specialized palliative home care.

    METHODS: The study design was a randomized control trial where family caregivers were allocated either to an intervention or control group. The intervention was delivered as a program including three sessions by health professionals (physician, nurse, and social worker/priest). Family caregivers from 10 specialized palliative home care settings were included. Questionnaires with validated instruments at baseline, upon completion, and 2 months following the intervention were used to measure effects of the intervention. The primary outcome was preparedness for caregiving in family caregivers.

    RESULTS: In total, 21 intervention programs were delivered, and 119 family caregivers completed all three measurements. The intervention group had significantly increased their preparedness for caregiving in both the short-term and long-term follow-up compared with the control group. The intervention group also reported significantly increased competence for caregiving in short-term but not long. No effects of the intervention were found on rewards for caregiving, caregiver burden, health, anxiety, or depression.

    CONCLUSIONS: The psycho-educational intervention has the potential to be used by health professionals to improve preparedness for caregiving among family caregivers in palliative care both in short and long terms. Copyright © 2015 John Wiley & Sons, Ltd. Copyright © 2015 John Wiley & Sons, Ltd.

  • 35.
    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.

  • 36.
    Janze, Anna
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Hospice Ersta diakoni, Ersta sjukhus.
    Henriksson (Alvariza), Anette
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Geriatrik Dalen Stockholm.
    Preparing for palliative caregiving as a transition in the awareness of death: family carer experiences.2014In: International Journal of Palliative Nursing, ISSN 1357-6321, E-ISSN 2052-286X, Vol. 20, no 10, p. 494-501Article in journal (Refereed)
    Abstract [en]

    AIM: The aim of this study was to explore family caregivers´ experiences from partners' stories about preparing for caregiving.

    METHODS: The study had a descriptive and interpretive design using qualitative interviews and qualitative content analysis.

    RESULTS: Preparing for caregiving was described in the two sub-themes: living in uncertainty, focusing on the present and preparing for the future; and preparing for caregiving while transitioning to new roles. One overarching theme 'preparing for caregiving in awareness of death' was seen as a common thread throughout the results. Preparing meant dealing with changes in life, living in uncertainty and transitioning to new roles.

    CONCLUSION: Family (partner) caregivers continuously tried to prepare in different ways in response to their partners' illness. Preparing for caregiving meant to willingly or unwillingly prepare for the dying and death of their partner and awareness about this was always present in some way, influencing the whole experience.

  • 37.
    Lundberg, Tina
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Forinder, Ulla
    Karolinska institutet, Högskolan i Gävle.
    Olsson, Mariann
    Karolinska institutet, Stiftelsen Stockholms sjukhem.
    Fürst, Carl Johan
    Lunds universitet.
    Årestedt, Kristofer
    Linnéuniversitetet, Linköpings universitet, Landstinget i Kalmar län.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Bereavement stressors and psychosocial well-being of young adults following the loss of a parent: A cross-sectional survey2018In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 35, p. 33-38, article id S1462-3889(18)30069-3Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The knowledge about young adults who have lost a parent to cancer is limited, and to reach a broader understanding about this group, this study used the Dual Process Model of Coping with Bereavement (Stroebe and Schut, 1999) as a theoretical framework. The purpose of this study was to describe loss- and restoration-oriented bereavement stressors and psychosocial wellbeing of young adults following the loss of a parent to cancer.

    METHOD: This survey used baseline data from a longitudinal study. Young adults, aged 16-28 years, who lost a parent to cancer more than two months earlier and agreed to participate in support groups held at three palliative care services in Sweden, responded to a comprehensive theory-based study-specific questionnaire.

    RESULTS: Altogether, 77 young adults (64 women and 13 men) answered the questionnaire an average of five-to-eight months after the loss. Twenty percent (n = 15) had not been aware of their parent's impending death at all or only knew a few hours before the death, and 65% (n = 50) did not expect the death when it occurred. The young adults reported low self-esteem (n = 58, 76%), mild to severe anxiety (n = 55, 74%), mild to severe depression (n = 23, 31%) and low life satisfaction.

    CONCLUSION: Young adults reported overall poor psychosocial wellbeing following bereavement. The unexpectedness and unawareness of the parent's imminent death, i.e., loss-oriented bereavement stressors, might influence psychosocial wellbeing. Despite these reports, restoration-oriented stressors, such as support from family and friends, helped them to cope with the loss.

  • 38.
    Melcher, Ulrica
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Henriksson (Alvariza), Anette
    Ersta Sköndal University College, Palliative Research Centre, PRC. Capio Geriatrics, Palliative Care Unit, Stockholm, Sweden.
    Sandell, Rolf
    Ersta Sköndal University College, Palliative Research Centre, PRC. Lunds universitet.
    Teenagers with a Dying Parent: A Qualitative Retrospective Study2014In: Abstracts of the 8th World Research Congress of the European Association for Palliative Care (EAPC) Lleida, Spain 5–7 June 2014, 2014, Vol. 28, no 6, p. 797-797, article id Abstract number: P413Conference paper (Other academic)
  • 39.
    Melcher, Ulrica
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Ersta sjukhus, Stockholm.
    Sandell, Rolf
    Lunds universitet.
    Henriksson (Alvariza), Anette
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Ersta sjukhus, Capio Geriatrik Dalen, Stockholm..
    Maintaining everyday life in a family with a dying parent: Teenagers' experiences of adapting to responsibility.2015In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 6, p. 1595-1601Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Teenagers are living through a turbulent period in their development, when they are breaking away from the family to form their own identities, and so they are particularly vulnerable to the stressful situation of having a parent affected by a progressive and incurable illness. The current study sought to gain more knowledge about the ways that teenagers themselves describe living in a family with a seriously ill and dying parent. More specifically, the aims were to describe how teenagers are emotionally affected by everyday life in a family with a dying parent and to determine how they attempt to adapt to this situation.

    METHOD: The study employed a descriptive and interpretive design using qualitative content analysis. A total of 10 teenagers (aged 14-19 years, 7 boys and 3 girls) participated through repeated, individual, informal interviews that were carried out as free-ranging conversations.

    RESULTS: While contending with their own vulnerable developmental period of life, the teenagers were greatly affected by their parent's illness and took on great responsibility for supporting their parents and siblings, and for maintaining family life. Lacking sufficient information and support left them rather unprepared, having to guess and to interpret the vague signs of failing health on their own, with feelings of uncertainty and loneliness as a consequence.

    SIGNIFICANCE OF RESULTS: Support from healthcare professionals should be designed to help and encourage parents to have open communications about their illness with their teenaged children. Our results add further support to the literature, reinforcing the need for an approach that uses a systemic perspective and considers the family to be the appropriate unit of care and offers a suitable support system.

  • 40.
    Norinder, Maria
    et al.
    Capio palliativ vård, Dalen, Stockholm.
    Goliath, Ida
    Karolinska institutet.
    Alvariza, Anette
    Capio palliativ vård, Dalen, Stockholm.
    Patients' experiences of care and support at home after a family member's participation in an intervention during palliative care.2017In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 15, no 3, p. 305-312Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Patients who receive palliative home care are in need of support from family members, who take on great responsibility related to caregiving but who often feel unprepared for this task. Increasing numbers of interventions aimed at supporting family members in palliative care have been described and evaluated. It is not known whether and how these interventions actually affect the care or support provided to a patient, even though it has been suggested that family members would be likely to provide better care and support and thus allow for positive experiences for patients. However, this has not been studied from the perspective of the patients themselves. The objective of our study was to explore patients' experiences of care and support at home after family members' participation in a psychoeducational intervention during palliative care.

    METHOD: Our study took a qualitative approach, and interviews were conducted with 11 patients whose family members had participated in a psychoeducational intervention during palliative home care. The interviews were analyzed employing interpretive description.

    RESULTS: Patients' experiences were represented by three themes: "safe at home," "facilitated and more honest communication," and "feeling like a unit of care." Patients felt that their needs were better met and that family members became more confident at home without risking their own health. Patients felt relieved when family members were given the opportunity to talk and reflect with others and hoped that the intervention would contribute to more honest communications between themselves and their family members. Further, it was of great importance to patients that family members receive attention from and be confirmed and supported by healthcare professionals.

    SIGNIFICANCE OF RESULTS: Our findings show how an intervention targeted at family members during palliative home care also benefits the patients.

  • 41.
    Olsson, Yvonne
    et al.
    Lunds universitet.
    Clarén, Lena
    Lunds universitet.
    Alvariza, Anette
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen, Stockholm.
    Årestedt, Kristofer
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Linnéuniversitetet, Linköping universitet.
    Hagell, Peter
    Högskolan Kristianstad.
    Health and Social Service Access Among Family Caregivers of People with Parkinson's Disease.2016In: Journal of Parkinson's Disease, ISSN 1877-7171, E-ISSN 1877-718X, Vol. 6, no 3, p. 581-587Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Being a family caregiver for a person with Parkinson's disease (PD) can negatively impact health and wellbeing, but it appears less clear to what extent caregivers' health/social service needs are met.

    OBJECTIVE: We explored the extent to which PD family caregivers experience sufficient access to health/social services, as compared to age-matched controls; and the associations between this and demographic and health-related variables.

    METHODS: A cross-sectional survey of 66 PD family caregivers and 79 age-matched control subjects including the SF-36 health survey, the Nottingham Health Profile Sleep section (NHP-Sleep), and questions regarding contacts with various health/social related services and whether these were perceived as sufficient.

    RESULTS: People reporting insufficient access (n = 29) were more often PD family caregivers than controls (83% vs. 37%), did more often have a disease of their own (79% vs. 46%), and reported poorer health according to the SF-36 and the NHP-Sleep. Being a PD family caregiver (OR, 8.90), reporting more pain (OR, 1.02) and having an own disease (OR, 3.46) were independently associated with insufficient health/social service access.

    CONCLUSIONS: Our results imply that those in greatest need for health/social services (i.e., those with poorer health, an own disease, and who are PD family caregivers) are those whose health/social service needs are least met. Larger studies are needed for firmer conclusions and regarding how unmet health/social service needs impacts caregiver health and wellbeing. Health/social service providers should not only focus on patients but also consider their family members' needs.

  • 42.
    O'Sullivan, Anna
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Öhlen, Joakim
    Göteborgs universitet.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio palliativ vård Dalens sjukhus Stockholm.
    Håkanson, Cecilia
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet högskola.
    Adaptation and validation of the VOICES (SF) questionnaire - for evaluation of end-of-life care in Sweden.2017In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: Instruments for evaluating end-of-life care by voicing experiences of family members have previously been lacking in Sweden. The objective of this study was therefore to adapt and validate the VOICES (SF) questionnaire to evaluate quality of end-of-life care in Sweden. The VOICES (SF) [Views of Informal Carers - Evaluation of Services (Short form)] is a questionnaire about bereaved relatives' experiences of care in the last three months of life of a deceased family member.

    METHODS: This study was performed based on translation and back translation, cross-cultural adaptation and content validation through cognitive interviewing and feedback from professional experts. For the cognitive interviews, a purposeful sample of 35 bereaved family members was recruited from home care, hospital wards and nursing homes. The participants were 13 men and 22 women (age ranged between 20 and 90+, mean age 66), who were relatives of persons who died from life-limiting conditions. The bereaved family members' and the professional experts' concerns were summarised and analysed based on clarity, understanding, relevance, sensitivity and alternative response/wording.

    RESULTS: The main concerns emerging from the content validation related to the understanding and clarity of some of the questionnaire items', and a few concerns regarding the relevance of different response alternatives or items. Only two of the family members found it emotional to complete the questionnaire, and they still deemed completing it to be important and manageable.

    SIGNIFICANCE OF RESULTS: The VOICES (SF) can be considered as feasible in the Swedish context, provided that cultural adaptation has been achieved, that is translation alone is not enough. The Swedish version will be available for healthcare professionals to use for quality monitoring of the care provided over the last three months in life, and for research, it enables national and cross-national comparisons between different healthcare places and organisations.

  • 43.
    Smedbäck, Jonas
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences.
    Öhlén, Joakim
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Göteborgs universitet.
    Årestedt, Kristofer
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Linnéuniversitetet.
    Alvariza, Anette
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen sjukhus, Karolinska institutet.
    Fürst, Carl-Johan
    Lunds universitet.
    Håkanson, Cecilia
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Palliative care during the final week of life of older people in nursing homes: A register-based study.2017In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 15, no 4, p. 417-424Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Our aim was to explore the presence of symptoms, symptom relief, and other key aspects of palliative care during the final week of life among older people residing in nursing homes.

    METHOD: Our study employed data from the Swedish Palliative Care Register on all registered individuals aged 60 and older who had died in nursing homes during the years 2011 and 2012. Variables pertaining to monitoring and treatment of symptoms, end-of-life discussions, circumstances around the death, and the individual characteristics of deceased individuals were explored using descriptive statistics.

    RESULTS: The most common underlying causes of death among the 49,172 deceased nursing home residents were circulatory diseases (42.2%) and dementia (22.7%). The most prevalent symptom was pain (58.7%), followed by rattles (42.4%), anxiety (33.0%), confusion (21.8%), shortness of breath (14.0%), and nausea (11.1%). Pain was the symptom with the highest degree of total relief (46.3%), whereas shortness of breath and confusion were totally relieved in 6.1 and 4.3% of all individuals, respectively. The use of valid instruments for symptom assessment was reported for pain in 12.3% and for other symptoms in 7.8% of subjects. The most prevalent individual prescriptions for injection PRN (pro re nata, according to circumstances) were for pain treatment (79.5%) and rattles (72.8%). End-of-life discussions were performed with 27.3% of all the deceased individuals and with 53.9% of their relatives. Of all individuals, 82.1% had someone present at death, and 15.8% died alone. Of all the nursing home resident deaths recorded, 45.3% died in their preferred place.

    SIGNIFICANCE OF RESULTS: There were large variations in degree of relief from different symptoms during the final week of life. Pain was the most prevalent symptom, and it was also the symptom with the highest proportion of total/partial relief. Other symptoms were less prevalent but also less well-relieved. Our results indicate a need for improvement of palliative care in nursing home settings, focusing on management of distressing symptoms and promotion of end-of-life discussions.

  • 44.
    Sveen, Josefin
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Melcher, Ulrica
    Ersta sjukhus, Hospicekliniken, Stockholm.
    Alvariza, Anette
    Ersta Sköndal University College, Palliative Research Centre, PRC. Ersta Sköndal University College, Department of Health Care Sciences. Capio Palliativ vård Dalens sjukhus, Stockholm, Karolinska institutet, Stockholm.
    Teenagers' reasoning about a parent's recent death in cancer2016In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 14, no 4, p. 349-357Article in journal (Refereed)
    Abstract [en]

    Objective: The aim of the study was to explore how teenagers reason about a parent's recent death and about their life without that parent.

    Method: A total of 10 teenagers (aged 14–19 years, 7 boys and 3 girls) were interviewed twice, 3–12 months after their parent's death. The interviews were carried out individually and as free-ranging conversations. A content analysis with a descriptive and interpretive design was conducted.

    Results: Importantly, all teenagers appreciated participating in the interviews. Some had not previously talked in such depth about this with anyone, while others had more open communications within their families and with others. Their parent's death was the worst thing that could happen, but they still expressed the feeling that it had been a relief for both the ill parent and themselves. The death had relieved the parent from suffering and a life with severe illness. Many of the teenagers empathized with the surviving parent's grief and worried about him or her as well as the entire home situation. As a consequence, the teenagers did not show their grief, as they did not want to burden the grieving parent. Seeing the parent grieving could lead to feelings of loneliness and hopelessness and that the support they needed was not there for them. Nevertheless, some teenagers could grieve together with the surviving parent in common understanding and with openness.

    Significance of Results: A tentative conclusion is that the teenagers who were more likely to talk and grieve together with their surviving parent coped better with their situation than teenagers who did not. Parentally bereaved teenagers tend to take on a responsibility to support the grieving parent, when it is they themselves who need and should receive support.

  • 45.
    Årestedt, Kristofer
    et al.
    Linnéuniversitetet, Linköpings universitet.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio palliativ vård Dalens sjukhus Stockholm.
    Boman, Kurt
    Umeå universitet.
    Öhlén, Joakim
    Göteborgs universitet.
    Goliath, Ida
    Karolinska institutet.
    Håkanson, Cecilia
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet högskola.
    Fürst, Carl Johan
    Lunds universitet, Region Skåne.
    Brännström, Margareta
    Umeå universitet.
    Symptom Relief and Palliative Care during the Last Week of Life among Patients with Heart Failure: A National Register Study.2017In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Heart failure is a disease with high morbidity, mortality, and physical and psychological burden. More knowledge about the care provided for patients with heart failure close to death is needed.

    OBJECTIVE: The aim was to describe key aspects of palliative care during the last week of life in patients with heart failure, as reported by healthcare professionals.

    DESIGN: This is a national register study.

    SETTING/SUBJECTS: The study included 3981 patients with diagnosed heart failure as the underlying cause of death.

    MEASUREMENTS: Data were obtained from the Swedish Register of Palliative Care, a national quality register that focuses on patients' last week of life, independent of diagnosis or care setting. The register includes information about care interventions connected with key aspects of palliative care. Data are reported retrospectively by a nurse or physician at the healthcare unit where the patient dies.

    RESULTS: Only 4.2% of patients with heart failure received specialized palliative care. In their last week of life, symptom prevalence was high, validated scales were seldom used, and symptoms were unsatisfactorily relieved. Around one-fifth (17%) of the patients in the study died alone. Less than half of family members had been offered bereavement support (45%). Moreover, one-third (28%) of the patients and more than half (61%) of the family members were reported to have had end-of-life discussions with a physician during the illness trajectory.

    CONCLUSION: The results indicate inadequate palliative care for patients with heart failure during their last week of life.

  • 46.
    Årestedt, Kristofer
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Carlander (Goliath), Ida
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Henriksson (Alvariza), Anette
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Factors Associated with Feelings of Reward during Ongoing Palliative Family Caregiving2014In: Palliative Medicine, Sage Publications, 2014Conference paper (Refereed)
  • 47.
    Öhlén, Joakim
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Göteborgs universitet.
    Russell, Lara
    Kanada.
    Håkanson, Cecilia
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Lunds universitet, Karolinska institutet .
    Alvariza, Anette
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Lunds universitet, Karolinska institutet .
    Fürst, Carl Johan
    Lunds universitet, Karolinska institutet .
    Årestedt, Kristofer
    Linnéuniversitetet, Linköpings universitet.
    Sawatzky, Richard
    Kanada.
    Variations in care quality outcomes of dying people: Latent class analysis of an adult national register population.2017In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 53, no 1, p. 13-24Article in journal (Refereed)
    Abstract [en]

    CONTEXT: Symptom relief is a key goal of palliative care. There is a need to consider complexities in symptom relief patterns for groups of people in order to understand and evaluate symptom relief as an indicator of quality of care at end of life.

    OBJECTIVES: The aims of this study were to distinguish classes of patients who have different symptom relief patterns during the last week of life and to identify predictors of these classes in an adult register population.

    METHODS: In a cross-sectional retrospective design, data was used from 87,026 decedents with expected deaths registered in the Swedish Register of Palliative Care in 2011 and 2012. Study variables were structured into patient characteristics, and processes and outcomes of quality of care. A latent class analysis was used to identify symptom relief patterns. Multivariate multinomial regression analyses were used to identify predictors of class membership.

    RESULTS: Five latent classes were generated: "relieved pain", "relieved pain and rattles", "relieved pain and anxiety", "partly relieved shortness of breath, rattles and anxiety" and "partly relieved pain, anxiety and confusion". Important predictors of class membership were age, sex, cause of death, and having someone present at death, individual PRN prescriptions and expert consultations.

    CONCLUSION: Inter-individual variability and complexity in symptom relief patterns may inform quality of care and its evaluation for dying people across care settings.

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