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  • 1.
    Alvariza, Anette
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Att vara nära under livets sista tid: Personcentrerat stöd2022Conference paper (Refereed)
    Abstract [sv]

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

  • 2.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Hur är det att vara forskare inom palliativ vård?2020Other (Other academic)
    Abstract [sv]

    I denna podd träffar du vår professor Anette Alvariza som forskar inom ämnet palliativ vård. Palliativ vård är vård som inte botar, men den är ändå mycket aktiv, ofta intensiv och erbjuder lindring. Den ges till svårt sjuka patienter och deras närstående. För de patienter som får denna vård är livet dock långt ifrån över, det är i allra högsta grad närvarande och mycket kommer till sin spets. När döden är nära blir livet mer närvarande.

  • 3.
    Alvariza, Anette
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio ASIH och palliativ vård, Dalens sjukhus.
    Axelsson, Bertil
    Umeå universitet.
    Rasmussen, Birgit
    Lunds universitet; Region Skåne.
    Ternestedt, Britt-Marie
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Fürst, Carl Johan
    Lunds universitet; Region skåne.
    Ny definition av palliativ vård med fokus på lidande2020In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 117, no 44-45, article id 20101Article in journal (Refereed)
    Abstract [en]

    [Redefining palliative care- focusing serious suffering of severe illness]

    Palliative care was initially developed for patients with a cancer diagnosis and severe symptoms. Despite the ambition to broaden the palliative care approach to include other groups, patients with cancer are still a majority in specialised palliative care. The broader view and development of palliative care has led to an intense debate on existing definitions. Following a request from The Lancet Commission on global palliative care, the International Association of Hospice and Palliative Care (IAHPC) has presented a new definition. The proposal was developed in several stages, in collaboration with specialists in palliative care from a total of 88 countries.The IAHPC's definition differs from the WHO's definition in several aspects. Most importantly, the IAHPC's definition takes a reversed perspective and instead of focusing on life-threatening illness as motivating palliative care, the new proposal focuses on serious suffering of a person with severe illness.

  • 4.
    Alvariza, Anette
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Holm, Maja
    Sophiahemmet högskola.
    Palliativ vård i hemmet2019In: Hemsjukvård: olika perspektiv på trygg och säker vård / [ed] Mirjam Ekstedt; Maria Flink, Stockholm: Liber, 2019, p. 83-100Chapter in book (Other academic)
  • 5.
    Alvariza, Anette
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Capio Palliative Care Dalen Hospital, Stockholm.
    Holm, Maja
    Department of Nursing Sciences, Sophiahemmet University, Stockholm.
    Benkel, Inger
    The Palliative Care Unit, Sahlgrenska University Hospital, Göteborg.
    Norinder, Maria
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliative Care Dalen Hospital, Stockholm.
    Ewing, Gail
    Centre for Family Research, University of Cambridge, United Kingdom.
    Grande, Gunn
    Division of Nursing, Midwifery & Social Care, Faculty of Biology, Medicine and Health, University of Manchester, United Kingdom.
    Håkanson, Cecilia
    Sahlgrenska Academy, Department of Geriatric Medicine, University of Gothenburg.
    Öhlen, Joakim
    Institute of Health and Care Sciences and the Centre for Person-Centred Care, Sahlgrenska Academy, University of Gothenburg.
    Årestedt, Kristofer
    Faculty of Health and Life Sciences, Linnaeus University, Kalmar; The Research Section, Kalmar County Council.
    A person-centred approach in nursing: Validity and reliability of the Carer Support Needs Assessment Tool2018In: 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.

  • 6.
    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)
  • 7.
    Alvariza, Anette
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Jalmsell, Li
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska universitetssjukhuset.
    Eklund, Rakel
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    The Family Talk Intervention in palliative home care when a parent with dependent children has a life-threatening illness: A feasibility study from parents' perspectives2021In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 19, no 2, p. 154-160Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: One of the main goals of the Family Talk Intervention (FTI) is to increase communication within families with dependent children about illness-related consequences and to support parenting. FTI is family-centered and includes six manual-based meetings led by two interventionists. This study aims to evaluate the feasibility of the FTI in terms of acceptability from the perspective of parents in families with dependent children where one parent receives specialized palliative home care.

    METHOD: A descriptive design employing mixed methods was used to evaluate the FTI in specialized palliative home care. In total, 29 parents participated in interviews and responded to a questionnaire following FTI. Qualitative content analysis and descriptive statistics were used for analyses.

    RESULTS: FTI responded to both the ill parent's and the healthy co-parent's expectations, and they recommended FTI to other families. Parents found the design of FTI to be well-structured and flexible according to their families' needs. Many parents reported a wish for additional meetings and would have wanted FTI to start earlier in the disease trajectory. Parents also would have wished for a more thorough briefing with the interventionists to prepare before the start. The importance of the interventionists was acknowledged by the parents; their professional competence, engagement, and support were vital for finding ways to open communication within the family. The FTI meetings provided them with a setting to share thoughts and views. Parents clearly expressed that they would never have shared thoughts and feelings in a similar way without the meetings.

    SIGNIFICANCE OF RESULTS: According to parents, FTI was found acceptable in a palliative home care context with the potential to add valuable support for families with minor children when a parent is suffering from a life-threatening illness.

  • 8.
    Alvariza, Anette
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Dalens sjukhus.
    Lindqvist, Olav
    Umeå universitet; Västerbottens läns landsting; Karolinska institutet.
    Öhlén, Joakim
    Göteborgs universitet; Sahlgrenska universitetssjukhuset.
    Rasmussen, Birgit Holritz
    Lunds universitet; Region Skåne.
    Omvårdnad vid livets slut2019In: Omvårdnadens grunder: hälsa och ohälsa / [ed] Anna-Karin Edberg; Helle Wijk, Lund: Studentlitteratur AB, 2019, 3, p. 707-745Chapter in book (Other academic)
  • 9.
    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.

  • 10.
    Alvariza, Anette
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Mjörnberg, Maria
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Gröndals vårdcentral, Stockholm.
    Goliath, Ida
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Palliative care nurses' strategies when working in private homes: A photo-elicitation study2020In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 29, no 1-2, p. 139-151Article in journal (Refereed)
    Abstract [en]

    AIMS AND OBJECTIVES: To explore palliative care nurses' work experiences caring for patients at the end of life in private homes.

    BACKGROUND: The home continues to be a desired place for care and dying; however, professional competence is needed and specialist palliative care nurses play a crucial role, often highly valued by patients and their family members. The private home as a physical work environment for nurses is explored, with both positive and negative aspects being described. To ensure future high-quality end-of-life care, there is a need to describe how palliative care nurses work in private homes.

    DESIGN: Interpretative descriptive.

    METHODS: Participant-generated photographs were used in conjunction with follow-up interviews with ten palliative home care nurses. Interpretive description was used for analysis. This study follows the COREQ checklist.

    RESULTS: The analysis process resulted in four constructed themes, presented here as strategies used by palliative care nurses: adjusting interactions and actions depending on the environment when entering each unique private home; supporting patients and family members in finding a balance between self-care, independence and safe care; guiding patients and family members towards and through environmental changes supporting end-of-life care at home; and using transitions between homes to reflect, recuperate and prepare.

    CONCLUSION: Working as a palliative care nurse in private homes clearly requires a variety of skills and competences, here operationalised in different strategies used to promote high-quality care.

    RELEVANCE TO CLINICAL PRACTICE: Palliative care nurses' considerations, insights and competence when performing end-of-life care in the diverse environments of private homes can contribute to the development of clinical practice. Knowledge about strategies can be used in nursing practice during everyday work, in nursing education and in the organisation of care, and can inform policy to ensure future high-quality palliative home care.

  • 11.
    Alvariza, Anette
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    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 intervention2018In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 16, no 3, p. 278-285Article 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.

  • 12.
    Angelhoff, Charlotte
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Linköpings universitet.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Weber Falk, Megan
    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.
    Communication, self-esteem and prolonged grief in parent-adolescent dyads, 1-4 years following the death of a parent to cancer2021In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 50, article id 101883Article in journal (Refereed)
    Abstract [en]

    PURPOSE: Talking and grieving together may be advantageous for maintaining belief in a meaningful future and can help bereaved adolescents and their parents to cope better with the situation. The aim of this study was to explore communication, self-esteem and prolonged grief in adolescent-parent dyads, following the death of a parent to cancer.

    METHOD: This study has a descriptive and comparative design. Twenty family dyads consisting of parentally bereaved adolescents (12-19 years) and their widowed parents completed the Parent and Adolescent Communication Scale, Rosenberg Self-Esteem Scale and Prolonged Grief-13, 1-4 years following the death of a parent.

    RESULTS: Twelve family dyads reported normal-high parent-adolescent communication, 11 dyads rated normal-high self-esteem. Two adolescents and three parents scored above the cut-off for possible prolonged grief disorder (≥35), none of these were in the same dyads. There was a difference (p < .05) between boys (mean 40.0) and girls (mean 41.9) with regard to open family communication, as assessed by parents. Girls reported lower self-esteem (mean 26.0) than boys (mean 34.1, p < .01).

    CONCLUSIONS: This study provides insights from parentally bereaved families which indicate that despite experiencing the often-traumatic life event of losing a parent or partner, most participants reported normal parent-adolescent communication, normal self-esteem and few symptoms of prolonged grief. The potential usefulness of identifying families who may need professional support in family communication following the death of a parent is discussed.

  • 13.
    Axelsson, Lena
    et al.
    Sophiahemmet högskola.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Carlsson, Nina
    Linnéuniversitetet.
    Cohen, S. Robin
    McGill University, Montreal, Canada; Lady Davis Research Institute, Montreal, Canada.
    Sawatzky, Richard
    Trinity Western University, Langley, Canada; St. Paul's Hospital, Vancouver, Canada; Göteborgs universitet.
    Årestedt, Kristofer
    Linnéuniversitetet; Forskningssektionen, Region Kalmar län.
    Measuring quality of life in life-threatening illness: Content validity and response processes of MQOL-E and QOLLTI-F in Swedish patients and family carers2020In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 19, no 1, article id 40Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The McGill Quality of Life Questionnaire - Expanded (MQOL-E) and the Quality of Life in Life-Threatening Illness-Family Carer/Caregiver version (QOLLTI-F) are developed for use with patients facing the end of life and their family carers, respectively. They are also developed for possible use as companion instruments. Contemporary measurement validity theory places emphasis on response processes, i.e. what people feel and think when responding to items. Response processes may be affected when measurement instruments are translated and adapted for use in different cultures. The aim of this study was to translate and examine content validity and response processes during completion of MQOL-E and QOLLTI-F version 2 (v2) among Swedish patients with life-threatening illness and their family carers.

    METHODS: The study was conducted in two stages (I) translation and adaptation (II) examination of content validity and response processes using cognitive interviews with 15 patients and 9 family carers. Participants were recruited from the hemodialysis unit, heart clinic, lung clinic and specialized palliative care of a Swedish county hospital. Patients had life-threatening illness such as advanced heart failure, advanced chronic obstructive pulmonary disease, end-stage kidney disease or advanced cancer. Patients were outpatients, inpatients or receiving home care.

    RESULTS: Patients and family carers respectively believed that the items of the MQOL-E and QOLLTI-F v2 reflect relevant and important areas of their quality of life. Although some items needed more time for reflection, both instruments were considered easy to understand. Some changes were made to resolve issues of translation. Participants expressed that reflecting on their situation while answering questions was valuable and meaningful to them, and that responding was an opportunity to express feelings.

    CONCLUSIONS: The results of response processes pertaining to the Swedish translations of both MQOL-E and QOLLTI-F v2 contribute evidence regarding content validity, linguistic equivalence and cultural appropriateness of the translated instruments. In addition, results show that the instruments may support conversations on matters of importance for quality of life between patients and/or family carers and health care professionals. Further research is needed to study the psychometric properties of Swedish translations.

  • 14.
    Axelsson, Lena
    et al.
    Sophiahemmet högskola.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Holm, Maja
    Sophiahemmet högskola.
    Årestedt, Kristofer
    Linnéuniversitetet; Forskningssektionen, Region Kalmar län.
    Intensity of Predeath Grief and Postdeath Grief of Family Caregivers in Palliative Care in Relation to Preparedness for Caregiving, Caregiver Burden, and Social Support2020In: Palliative Medicine Reports, ISSN 2689-2820, Vol. 1, no 1, p. 191-200Article in journal (Refereed)
    Abstract [en]

    Background: The intensity of predeath grief is associated with postdeath grief in family caregivers of patients in palliative care. Different factors during caregiving may influence this association.

    Objective: To examine (1) the intensity of grief in relation to preparedness for caregiving, caregiver burden, and social support, and (2) if these variables moderate associations between predeath and postdeath grief.

    Methods: This prospective correlational study used unpaired t-test to compare grief in relation to preparedness for caregiving, caregiver burden, and social support. Hierarchical multiple linear regression analysis investigated moderation effects. Family caregivers were recruited from 10 palliative homecare facilities. The Anticipatory Grief Scale, Texas Revised Inventory of Grief, Preparedness for Caregiving Scale, Caregiver Burden Scale, and Multidimensional Scale of Perceived Social Support were used. Ethical approval for the study was granted by the Regional Ethical Review Board in Stockholm, Sweden.

    Results: In total, 128 family caregivers participated. Those with high caregiver burden scored significantly higher intensity of predeath but not postdeath grief. Caregiver burden and social support moderated the association between intensity of predeath grief and postdeath grief. There was a stronger association between predeath and postdeath grief among caregivers with low caregiver burden or low social support. Preparedness for caregiving had no moderating effect.

    Discussion: Attention should be directed to caregiver burden and social support during family caregiving, as these variables seem to be significant for the intensity of grief before and after the patient's death. Acknowledging predeath grief during caregiving and recognizing pre- and postdeath grief as parts of the same process are of importance in clinical practice and when designing supportive interventions.

  • 15.
    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 Life2018In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 55, no 2, p. 236-244Article 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.

  • 16. Axelsson, Lena
    et al.
    Alvariza, Anette
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Årestedt, Kristofer
    Livskvalitet hos Närstående till personer i livets slut: Validering av The Quality of Life in Life-Threatening Illness - Family carer version2022Conference paper (Refereed)
    Abstract [sv]

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

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

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

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

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

  • 17.
    Carlsson, Nina
    et al.
    Linnéuniversitetet.
    Alvariza, Anette
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Dalens sjukhus, Stockholm.
    Axelsson, Lena
    Sophiahemmet Högskola.
    Bremer, Anders
    Linnéuniversitetet; Region Kalmar Län.
    Årestedt, Kristofer
    Linnéuniversitetet; Region Kalmar Län.
    Grief reactions in relation to professional and social support among family members of persons who died from sudden cardiac arrest: A longitudinal survey study2022In: Resuscitation Plus, E-ISSN 2666-5204, Vol. 12, article id 100318Article in journal (Refereed)
    Abstract [en]

    Background: The loss of a close person from sudden cardiac arrest (CA) leaves family members at risk of developing grief reactions such as symptoms of prolonged grief, anxiety, depression, and posttraumatic stress. The aim was to describe longitudinal variations in grief reactions and its association with professional and social support among bereaved family members after a close person's death from sudden CA.

    Methods: This longitudinal multimethod survey included 69 bereaved family members who completed a questionnaire 6 and 12-months after the CA, including the Prolonged Grief Disorder-13, Hospital Anxiety and Depression Scale, PTSD Checklist for DSM-5, and Multidimensional Scale of Perceived Social Support. Qualitative data were collected by open-ended questions. Quantitative data was analyzed using Wilcoxon signed-rank test and linear regression analysis while written comments were analyzed using qualitative content analysis.

    Results: The median age was 62 years, 67 % were women, and 38 % had been present during the resuscitation attempts. Using the cut-off scores at the 6- and 12-month assessments respectively, 14 % and 17 % reported symptoms of prolonged grief, 32 % and 26 % symptoms of anxiety, 14 % and 9 % depression, and 4 % and 1 % posttraumatic stress. Professional and social support at the 6-month assessment were significantly associated with symptoms of prolonged grief, anxiety, depression, and/or posttraumatic stress at the 12-month assessments but could not predict any changes in the grief reactions.

    Conclusions: Family members' grief reactions point to the importance of proactive and available support over time to meet family members' needs.

  • 18.
    Carlsson, Nina
    et al.
    Linnéuniversitetet; Internmedicin, Region Kalmar län.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Bremer, Anders
    Linnéuniversitetet; Ambulanssjukvården, Region Kalmar län.
    Axelsson, Lena
    Sophiahemmet högskola.
    Årestedt, Kristofer
    Linnéuniversitetet; Forskningssektionen, Region Kalmar län.
    Symptoms of Prolonged Grief and Self-Reported Health Among Bereaved Family Members of Persons Who Died From Sudden Cardiac Arrest2023In: Omega, ISSN 0030-2228, E-ISSN 1541-3764, Vol. 87, no 1, p. 66-86Article in journal (Refereed)
    Abstract [en]

    Sudden cardiac arrest is common and is one of the leading causes of death in the western world, and the sudden loss following cardiac arrest may have a significant impact on bereaved family members' health. Therefore, the aim of this study was to describe symptoms of prolonged grief and self-reported health among bereaved family members of persons who died from sudden cardiac arrest, with comparisons between spouses and non-spouses. This was a cross-sectional observation study with 108 adult family members who completed a questionnaire. A fifth of the family members reported prolonged grief, and problems with self-reported health were common, especially regarding anxiety. Spouses reported more problems with prolonged grief and self-reported health compared with non-spouses. The risk of these family members developing prolonged grief and health problems should be recognized, and professional support should be offered.

  • 19.
    Carlsson, Nina
    et al.
    Linnéuniversitetet.
    Bremer, Anders
    Linnéuniversitetet.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Årestedt, Kristofer
    Linnéuniversitetet; Region Kalmar län.
    Axelsson, Lena
    Sophiahemmet högskola.
    Losing a close person following death by sudden cardiac arrest: Bereaved family members' lived experiences2022In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 46, no 5, p. 1139-1148Article in journal (Refereed)
    Abstract [en]

    The death of a close person has profound impact on people's lives, and when death is sudden there are no possibilities to prepare for the loss. The study aimed to illuminate meanings of losing a close person following sudden cardiac arrest. A qualitative interpretive design was used, and twelve bereaved family members were interviewed. The results show a transition from pending between life and sudden loss during resuscitation and proceeding with life after the sudden loss. These results of being in liminality illuminate the family members' essential narration and the importance of compassionate care throughout this challenging transition.

  • 20. Carlsson, Nina
    et al.
    Årestedt, Kristoffer
    Alvariza, Anette
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Axelsson, Lena
    Bremer, Anders
    Det professionella och sociala stödets betydelse för symtom på förlängd sorg hos närstående till personersom avlidit till följd av hjärtstopp2022Conference paper (Refereed)
    Abstract [sv]

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

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

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

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

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

  • 21.
    Eklund, Rakel
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio palliativ vård, Dalens sjukhus.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Jalmsell, Li
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Lövgren, Malin
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    The family talk intervention for families when a parent is cared for in palliative care: Potential effects from minor children’s perspectives2020In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 19, p. 1-10, article id 50 (2020)Article in journal (Refereed)
    Abstract [en]

    Background: Children show long-term psychological distress if family communication and illness-related information are poor during and after a parent’s illness and death. Few psychosocial interventions for families with minor children living with a parent who has a life-threatening illness have been evaluated rigorously. Even fewer interventions have been family-centered. One exception is the Family Talk Intervention (FTI), which has shown promising results regarding increased illness-related knowledge and improved family communication. However, FTI has not yet been evaluated in palliative care. This study therefore aimed to explore the potential effects of FTI from the perspectives of minor children whose parent is cared for in specialized palliative home care.

    Methods: This pilot intervention study involves questionnaire and interview data collected from children after participation in FTI. Families were recruited from two specialized palliative home care units. To be included, families must include one parent with life-threatening illness, at least one child aged 6–19 years, and understand and speak Swedish. Twenty families with a total of 34 children participated in FTI; 23 children answered the questionnaire, and 22 were interviewed after participation.

    Results: The children reported that FTI increased their knowledge about their parents’ illness. They said the interventionist helped them to handle school-related problems, establish professional counselling, and find strength to maintain everyday life. Children aged 8–12 reported that talking with their parents became easier after FTI, whereas communication was unchanged for teenagers and between siblings. Children also reported having been helped to prepare for the future, and that they benefitted from advice about how to maintain everyday life and minimize conflicts within the family.

    Conclusions: Children who participated in FTI reported that it was helpful in many ways, providing illness-related information and improving family communication when a parent has a life-threatening illness. Other potential positive effects reported by the children were that FTI facilitated their preparation for the future, decreased family conflicts, and started to build up resilience.

  • 22.
    Eklund, Rakel
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Jalmsell, Li
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska universitetssjukhuset.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska universitetssjukhuset.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska universitetssjukhuset.
    Children’s experiences of the family talk intervention when a parent is cared for in palliative home care: A feasibility study2022In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 46, no 7, p. 1655-1666Article in journal (Refereed)
    Abstract [en]

    The aim with this study was to explore minor children’s experiences of the Family Talk Intervention (FTI) when a parent is cared for in palliative home care, with a focus on feasibility. The main goal of FTI is to increase family communication about the illness. This paper is based on 25 children’s reports, derived from a pilot study with a mixed method design, involving both questionnaires and interviews, performed after the children’s participation. A majority of the children appreciated the structure and content of FTI. They felt seen, heard and acknowledged by the interventionists and recommended FTI to other children in similar situations.

  • 23.
    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 Palliativ vård Dalen.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Children’s Self-Reports About Illness-Related Information and Family Communication When a Parent Has a Life-Threatening Illness2020In: Journal of Family Nursing, ISSN 1074-8407, E-ISSN 1552-549X, Vol. 26, no 2, p. 102-110Article in journal (Refereed)
    Abstract [en]

    Children's experiences of information and family communication when a parent has a life-threatening illness have been sparsely studied, though such information is important for the child's wellbeing. The aim of this study was to explore children's reports of illness-related information and family communication when living with a parent with a life-threatening illness. Forty-eight children, aged 7 to 19 years, were recruited from four specialized palliative home care units in Stockholm, Sweden. All but one child reported that someone had told them about the parent's life-threatening illness; however, two thirds wanted more information. A quarter of the teenagers reported that they had questions about the illness that they did not dare to ask. Half of the children, aged 8 to 12, reported that they felt partially or completely unable to talk about how they felt or show their feelings to someone in the family. Interventions are needed that promote greater family communication and family-professional communication.

  • 24.
    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 Palliativ vård Dalen.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Children's views are not taken into account in accordance with article 12 of the united nations convention on the rights of the child in the family talk intervention when a parent is cared for in palliative care2022In: Omega, ISSN 0030-2228, E-ISSN 1541-3764, Vol. 85, no 1, p. 126-154Article in journal (Refereed)
    Abstract [en]

    Having a parent with a life-threatening illness is challenging throughout the illness trajectory, and for some also in bereavement. Article 12 of the United Nations Convention on the Rights of the Child states a child’s right to express their opinion and have it respected in processes that affect them. The aim of this paper were to examine the child’s active participation in a family support programme, the Family Talk Intervention, in accordance with Article 12, when having a parent cared for in palliative care. Twenty families with 50 children participated. Fieldnotes were taken during the programme and later analysed with interpretive descriptions.The study shows that all children were listened to, but only a quarter reached the minimum point required in Article 12, where their views were taken into account. The Family Talk Intervention in palliative care would benefit from implementing a child-centred approach in order for all children to be active participants.

  • 25.
    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, 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.

  • 26.
    Eklund, Rakel
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Udo, Camilla
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Högskolan Dalarna; Centrum för klinisk forskning, Dalarna.
    Talking about death when a parent with dependent children dies of cancer: A pilot study of the Family Talk Intervention in palliative care2022In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 46, no 10, p. 2384-2394Article in journal (Refereed)
    Abstract [en]

    This study focused on families with dependent children who participated in the Family Talk Intervention (FTI) and lost a parent during the intervention or directly thereafter. The aim was to explore how they perceived information and communication about the imminent death during the illness trajectory and after the loss. Seven families from palliative homecare settings in Sweden participated. This study suggests that it is important to support family communication when a parent is dying, since communication in this situation is unlike everyday family communication, as they enter a complex and existentially unfamiliar area, hard to initiate on their own.

  • 27.
    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
    Norway.
    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 care2018In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 74, no 8, p. 1839-1850Article 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.

  • 28. Gedda, Jenny
    et al.
    Goliath, Ida
    Dabrowski, Michael
    Alvariza, Anette
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    We Are Co: Ett digitalt verktyg som stimulerar och inspirerar medmänniskor till en förbättradgemensam upplevelse i palliativ vård2022Conference paper (Refereed)
    Abstract [sv]

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

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

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

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

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

  • 29.
    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.

  • 30.
    Henriksson (Alvariza), Anette
    Ersta Sköndal University College, Palliative Research Centre, PRC. Örebro universitet.
    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.

  • 31.
    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)
  • 32.
    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).

  • 33.
    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, 2013Chapter in book (Other academic)
  • 34.
    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.

  • 35.
    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.

  • 36.
    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 care2011In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 9, no 3, p. 263-271Article in journal (Refereed)
  • 37.
    Henriksson (Alvariza), Anette
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Geriatrik Dalen sjukhus; Ersta sjukhus; Karolinska institutet.
    Carlander (Goliath), Ida
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Ersta sjukhus; Karolinska institutet.
    Årestedt, Kristofer
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Linköpings universitet; Linnéuniversitetet .
    Factors associated with feelings of reward during ongoing family palliative caregiving2015In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 3, p. 505-12Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Of the few studies that have paid attention to feelings of reward in family palliative caregiving, most are retrospective and examine the experiences of bereaved family caregivers. Although feeling rewarded has been described as an influence that may facilitate the way family caregivers handle the caregiving situation, no study has sought to identify the factors associated with feelings of reward while providing ongoing family palliative care. The aim of this study, therefore, was to identify influential factors in feelings of reward experienced by family palliative caregivers.

    METHOD: Our study had a correlational cross-sectional design. Family caregivers (n = 125) of patients receiving specialized palliative care were consecutively recruited from four settings. These caregivers answered a questionnaire that included the Rewards of Caregiving Scale (RCS). This questionnaire included questions about demographic background and scales to measure preparedness for caregiving, feelings of hope, perceived health, and symptoms of anxiety and depression. Correlation and regression analyses were conducted to identify factors associated with rewards.

    RESULTS: The results demonstrated that the more prepared caregivers with higher levels of hope felt more rewarded, while caregivers with higher levels of anxiety and those in a spousal relationship with the patient felt less rewarded by caregiving.

    SIGNIFICANCE OF RESULTS: It seems reasonable that feeling rewarded can be a significant contributor to the overall experience of providing ongoing palliative care. The situation of family caregivers has been shown to be multifaceted and complex, and such covariant factors as preparedness, anxiety, hope, and being in a spousal relationship with the patient to influence this experience.

  • 38.
    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)
    Abstract [en]

    Objectives: Palliative family caregivers appear to experience rewards of caregiving concurrent with burdens and negative feelings. Relatively few studies have especially 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. This study aimed to describe feelings of rewards among family caregivers during ongoing palliative care. A further aim was to compare experience of rewards in relation to sex and age. Methods: The sample consisted of 125 family caregivers and the study 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 used to describe characteristics of the participants and the level of rewards. Mann-Whitney U test was used to compare differences between groups of different sex and age. Results: Palliative family caregivers reported in general high levels of reward.The largest source of rewards was feelings of being helpful to the patient. This was closely followed by rewards as a consequence of giving something to the patients that brought her/him happiness and being there for the patient. The smallest sources of rewards were personally growth, self-satisfaction and personal meaning. There was an association between rewards and age but not between men and women. Conclusions: Family caregivers experienced rewards of caregiving during ongoing palliative care despite their unique and stressful situation. Feelings of rewards seem to be about handling the situation in a satisfying way, to feel competent and confident to take care of the patient and thereby feel proud. Support could preferably be designed aiming to improve family caregiver’s ability to care and to facilitate rewards of caregiving and focus on strengths and resources.

  • 39.
    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.

  • 40.
    Henriksson (Alvariza), Anette
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Hudson, Peter
    Centre for Palliative Care, St. Vincent's Hospital and Collaborative Centre of The University of Melbourne, Fitzroy, Victoria, Australia.
    Öhlen, Joakim
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Thomas, Kristina
    Centre for Palliative Care, St. Vincent's Hospital and Collaborative Centre of The University of Melbourne, Fitzroy, Victoria, Australia.
    Holm, Maja
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Carlander (Goliath), Ida
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm.
    Hagell, Peter
    The PRO-CARE Group, School of Health and Society, Kristianstad University, Kristianstad.
    Årestedt, Kristofer
    Center for Collaborative Palliative Care, Linnaeus University, Kalmar.
    Use of the Preparedness for Caregiving Scale in Palliative Care: A Rasch Evaluation Study2015In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 50, no 4, p. 533-541Article in journal (Refereed)
    Abstract [en]

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

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

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

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

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

  • 41.
    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.

  • 42.
    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.

  • 43.
    Holm, Maja
    et al.
    Sophiahemmet högskola.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio ASIH och palliativ vård Dalen.
    Stödinterventioner till närstående under pågående vård2020In: Palliativ vård: begrepp och perspektiv i teori och praktik / [ed] Birgitta Andershed; Britt-Marie Ternestedt, Lund: Studentlitteratur AB, 2020, 2, p. 485-498Chapter in book (Other academic)
  • 44.
    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 professionals2017In: 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.

  • 45.
    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; Region Kalmar län.
    Psychometric evaluation of the anticipatory grief scale in a sample of family caregivers in the context of palliative care.2019In: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 17, no 1, article id 42Article in journal (Refereed)
    Abstract [en]

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

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

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

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

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

  • 46.
    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.

  • 47.
    Holm, Maja
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Carlander (Goliath), Ida
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Fürst, Carl-Johan
    Lunds universitet.
    Wengström, Yvonne
    Karolinska institutet; Örebro universitet.
    Årestedt, Kristofer
    Linköpings universitet; Linnéuniversitetet.
    Öhlen, Joakim
    Ersta Sköndal University College, Palliative Research Centre, PRC. Göteborgs universitet.
    Henriksson (Alvariza), Anette
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet; Capio Geriatrik, Dalen, Stockholm.
    Delivering and participating in a psycho-educational intervention for family caregivers during palliative home care: A qualitative study from the perspectives of health professionals and family caregivers2015In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 14, no 16Article in journal (Refereed)
    Abstract [en]

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

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

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

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

  • 48.
    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.

  • 49.
    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)
  • 50.
    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.

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