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  • 1.
    Alizadeh, Zahra
    et al.
    Shahid Beheshti University of Medical Sciences, Tehran, Iran.
    Rohani, Camelia
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Shahid Beheshti University of Medical Sciences, Tehran, Iran.
    Rassouli, Maryam
    Shahid Beheshti University of Medical Sciences, Tehran, Iran.
    Ilkhani, Mahnaz
    Shahid Beheshti University of Medical Sciences, Tehran, Iran.
    Hazrati, Maryam
    Shiraz University of Medical Sciences, Shiraz, Iran.
    Transitional Cancer Care Program from Hospital to Home in the Health Care System of Iran2021In: Asian Pacific journal of cancer prevention : APJCP, ISSN 2476-762X, Vol. 22, no 4, p. 1231-1237Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: Transitional care program refers to the health care continuity during transferring from one health care setting to another or to home. This is an essential program for cancer patients and reduces the risk of unnecessary hospital admissions as well as the complications of the disease. The aim of this study was to develop a transitional cancer care program from hospital to home in the health care system of Iran.

    METHODS: This study is a health policy and system research. It was conducted in four stages from October 2019 to January 2020. The first stage was a qualitative study. The qualitative data were collected through semi-structured interviews with 24 participants and a focus group with eight experts. In the second stage, a literature review of transitional care models was carried out. The initial version of the transitional cancer care program was developed based on the qualitative results and the literature review in the third stage. The validity and feasibility of the program were assessed using the Delphi study in the fourth stage.

    RESULTS: Six major categories were extracted from the qualitative results, consisting of "integrated services for the continuity of care", "holistic care", "care standardization", "the use of telemedicine", "the transparency of rules" and "the care process provision". Using these results and extracted the three common models of transitional care, the initial program was developed in three phases of pre-discharge, post-discharge, and transitional care with six protocols. The content validity of the program (98.7%) and its feasibility (95.8%) were approved by experts in the Delphi rounds.

    CONCLUSIONS: It is necessary to revise hospitals' discharge program, and home health care center's plan for admission and delivering health care services for cancer patients. Also, a pilot program is necessary to find the system advantages and disadvantages.<br />.

  • 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 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.

  • 10.
    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.

  • 11.
    Andersen, Rebecka
    et al.
    Ersta Sköndal Bräcke University College, Centre for Civil Society Research.
    O'Sullivan, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    De som samhället inte vill se2019In: Utsatthet och ansvar: Flickan med svavelstickorna i vår tid / [ed] Gunilla Silfverberg, Stockholm: Appell Förlag , 2019, 1, p. 80-92Chapter in book (Other academic)
  • 12.
    Andershed, Birgitta
    et al.
    Örebro universitet.
    Ternestedt, Britt-MarieErsta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Palliativ vård: begrepp och perspektiv i teori och praktik2020Collection (editor) (Other academic)
    Abstract [sv]

    Vad är ett gott liv nära döden och hur kan ett sådant främjas? Många olika synsätt existerar sida vid sida och det finns inte enbart ett enkelt svar. För att fånga den enskilda personens behov krävs ett personcentrerat förhållningssätt där patienter och närstående är självklara aktörer. Behovet av kunskap om döende, död och palliativ vård har blivit extra tydligt i samband med den pandemi som drabbade världen våren 2020.

    Detta är den andra omarbetade och uppdaterade utgåvan av boken. Nya kapitel: Möte med religion i det nya Sverige, Mening, Sorg samt Medicinska aspekter på döendefasen kompletterar detta redan gedigna verk. Centrala begrepp och perspektiv i teori och praktik belyses i bokens sju delar: Att möta döden i vår samtid, Värdegrund och förhållningssätt, Identitet, autonomi och delaktighet, Smärta, lidande och sorg, Stöd, tröst och mening, Livet nära döden - tidigt och sent i livet och Den palliativa vårdens praktik. Samtliga kapitel i boken har en tydlig vetenskaplig grund. Författarna är aktiva forskare med olika yrkesbakgrund och erfarenheter av palliativ vård.

    Boken vänder sig till studenter på grundnivå och avancerad nivå inom hälso- och sjukvårdsprogrammen, men även forskare, beslutsfattare och en intresserad allmänhet kan ha nytta av att läsa boken. 

  • 13.
    Angelhoff, Charlotte
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Linköpings universitet; H.K.H. Kronprinsessan Victorias barn- och ungdomssjukhus, Linköping.
    Johansson, Peter
    Linköpings universitet.
    Svensson, Erland
    Totalförsvarets forskningsinstitut (FOI).
    Sundell, Anna Lena
    Odontologiska institutionen Region Jönköpings län; Jönköping University.
    Correction to: Swedish translation and validation of the Pediatric Insomnia Severity Index2020In: BMC Pediatrics, ISSN 1471-2431, E-ISSN 1471-2431, no 1, p. 1-1, article id 333Article in journal (Refereed)
    Abstract [en]

    An amendment to this paper has been published and can be accessed via the original article.

  • 14.
    Angelhoff, Charlotte
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Linköpings universitet; H.K.H. Kronprinsessan Victorias barn- och ungdomssjukhus, Linköping.
    Johansson, Peter
    Linköpings universitet.
    Svensson, Erland
    Totalförsvarets forskningsinstitut (FOI).
    Sundell, Anna Lena
    Odontologiska institutionen Region Jönköpings län; Jönköping University.
    Swedish translation and validation of the Pediatric Insomnia Severity Index2020In: BMC Pediatrics, ISSN 1471-2431, E-ISSN 1471-2431, Vol. 20, no 1, article id 253Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: To increase health and well-being in young children, it is important to acknowledge and promote the child's sleep behaviour. However, there is a lack of brief, validated sleep screening instruments for children. The aims of the study were to (1) present a Swedish translation of the PISI, (2) examine the factor structure of the Swedish version of PISI, and test the reliability and validity of the PISI factor structure in a sample of healthy children in Sweden.

    METHODS: The English version of the PISI was translated into Swedish, translated back into English, and agreed upon before use. Parents of healthy 3- to 10-year-old children filled out the Swedish version of the PISI and the generic health-related quality of life instrument KIDSCREEN-27 two times. Exploratory and confirmatory factor analyses for baseline and test-retest, structural equation modelling, and correlations between the PISI and KIDSCREEN-27 were performed.

    RESULTS: In total, 160 parents filled out baseline questionnaires (test), whereof 100 parents (63%) filled out the follow-up questionnaires (retest). Confirmative factor analysis of the PISI found two correlated factors: sleep onset problems (SOP) and sleep maintenance problems (SMP). The PISI had substantial construct and test-retest reliability. The PISI factors were related to all KIDSCREEN-27 dimensions.

    CONCLUSIONS: The Swedish version of the PISI is applicable for screening sleep problems and is a useful aid in dialogues with families about sleep.

  • 15.
    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.

  • 16.
    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.

  • 17.
    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.

  • 18.
    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.

  • 19.
    Beernaert, Kim
    et al.
    Belgium.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Fürst, Carl Johan
    Lunds universitet.
    Nyberg, Tommy
    Karolinska institutet; University of Cambridge, United Kingdom.
    Steineck, Gunnar
    Karolinska institutet; Sahlgrenska akademin, Göteborgs universitet.
    Bylund-Grenklo, Tove
    Karolinska institutet; Linnéuniversitetet.
    Distrust in the End-of-Life Care Provided to a Parent and Long-Term Negative Outcomes Among Bereaved Adolescents: A Population-Based Survey Study2017In: Journal of Clinical Oncology, ISSN 0732-183X, E-ISSN 1527-7755, Vol. 35, no 27, p. 3136-3144Article in journal (Refereed)
    Abstract [en]

    Purpose: Previous research shows that the death of a parent places children at risk for a number of negative outcomes. The role of trust in health care at the end of life has been acknowledged as crucial for patients and adult family members. However, the consequences of children’s distrust in the care provided to their parents remain unknown. Therefore, we investigated the negative long-term outcomes of cancer-bereaved sons’ and daughters’ distrust in the care that was provided to a dying parent.

    Methods: We used a population-based nationwide survey to investigate self-reported distrust in the care provided and possible negative outcomes in 622 (73%) participants who had lost a parent as a result of cancer 6 to 9 years earlier, at ages 13 to 16 years. All participants were 18 years or older at the time of the survey.

    Results: In those who reported no or little trust (ie, distrust) in the health care provided to their dying parents, we found statistically significantly higher risks of various negative outcomes at the time of survey: bitterness toward health care professionals for not having done everything that was possible (crude risk ratio [RR], 3.5; 95% CI, 2.3 to 5.1) and for having stopped treatment (RR, 3.4; 95% CI, 2.1 to 6.0), self-destructiveness (eg, self-injury [RR, 1.7; 95% CI, 1.2 to 2.4]), and psychological problems (eg, moderate to severe depression according to the Patient Health Questionnaire–9 [RR, 2.3; 95% CI, 1.5 to 3.5]).

    Conclusion: In cancer-bereaved former adolescents, distrust in the health care provided to the dying parent is associated with a higher risk of negative long-term outcomes. The health care professionals involved in this care might play an important role in safeguarding the trust of adolescents.

  • 20.
    Beernaert, Kim
    et al.
    Belgium.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Jeppesen, Jørgen
    Denmark.
    Werlauff, Ulla
    Denmark.
    Rahbek, Jes
    Denmark.
    Sejersen, Thomas
    Karolinska institutet.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Parents' Experiences of Information and Decision Making in the Care of Their Child With Severe Spinal Muscular Atrophy: A Population Survey2019In: Journal of Child Neurology, ISSN 0883-0738, E-ISSN 1708-8283, Vol. 34, no 4, p. 210-215Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE:: This study aims to assess the experiences and wishes of parents of children with severe spinal muscular atrophy regarding information and decision-making throughout the course of the illness.

    STUDY DESIGN:: A full population survey, conducted in 2015, among parents of children with severe spinal muscular atrophy who were born in Denmark between January 1, 2003, and December 31, 2013. We used a study-specific questionnaire with items about experiences and wishes concerning the provision of information about diagnosis, treatment, and end-of-life care.

    RESULTS:: Among the 47 parents that were identified, 34 parents of 21 children participated. Eleven of them were nonbereaved and 23 were bereaved parents. All parents stated that health care staff did not take any decisions without informing them. A proportion of parents indicated that they were not informed about what spinal muscular atrophy entails (32%), possible treatment options (18%), or the fact that their child would have a short life (26%) or that death was imminent (57%). Most of the bereaved parents who had wishes concerning how and where their child would pass away had their wishes fulfilled.

    CONCLUSIONS:: The study showed that health care staff did not take treatment decisions without parents being informed. However, there is room for improvement concerning information about what spinal muscular atrophy entails, treatment options, and prognosis. Possibilities of palliative care and advance care planning should be investigated for these parents, their child, and health care staff.

  • 21.
    Bergdahl, Elisabeth
    et al.
    Norway.
    Ternestedt, Britt-Marie
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Berterö, Carina
    Linköpings universitet.
    Andershed, Birgitta
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Norway.
    The theory of a co-creative process in advanced palliative home care nursing encounters: A qualitative deductive approach over time.2019In: Nursing Open, E-ISSN 2054-1058, Vol. 6, no 1, p. 175-188Article in journal (Refereed)
    Abstract [en]

    Aims and objectives: The aim of this study was to test the theoretical conceptualization of the co-creative process in home care nursing encounters over time.

    Method and design: This was a multiple case study with a deductive analysis of qualitative data over time, using interviews and observations collected from three cases.

    Results: The co-creative process was complex and contained main, sub- and micro-processes. Time was important and valuable, giving the patient and relatives space to adjust the process to their own pace. Some processes were worked on more intensively in accordance with the patients' and relatives' needs, and these are considered the main-process. The further developed theory of the co-creative process and its main, sub- and microprocesses can be understood as a concretization of how good nursing care can be performed within caring relationships in the context of advanced palliative home care.

  • 22.
    Birgisdóttir, Dröfn
    et al.
    Lunds universitet.
    Bylund Grenklo, Tove
    Karolinska institutet; Högskolan i Gävle.
    Nyberg, Tommy
    Karolinska institutet; University of Cambridge, United Kingdom.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Steineck, Gunnar
    Göteborgs universitet.
    Fürst, Carl J
    Lunds universitet.
    Losing a parent to cancer as a teenager: Family cohesion in childhood, teenage, and young adulthood as perceived by bereaved and non-bereaved youths.2019In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 28, no 9, p. 1845-1853Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The aim of this study was to investigate levels of perceived family cohesion during childhood, teenage years, and young adulthood in cancer-bereaved youths compared with non-bereaved peers.

    METHODS: In this nationwide, population-based study, 622 (73%) young adults (aged 18-26) who had lost a parent to cancer 6 to 9 years previously, when they were teenagers (aged 13-16), and 330 (78%) non-bereaved peers from a matched random sample answered a study-specific questionnaire. Associations were assessed using multivariable logistic regression.

    RESULTS: Compared with non-bereaved youths, the cancer-bereaved participants were more likely to report poor family cohesion during teenage years (odds ratio [OR] 1.6, 95% CI, 1.0-2.4, and 2.3, 95% CI, 1.5-3.5, for paternally and maternally bereaved youths, respectively). This was also seen in young adulthood among maternally bereaved participants (OR 2.5; 95% CI, 1.6-4.1), while there was no difference between paternally bereaved and non-bereaved youths. After controlling for a number of covariates (eg, year of birth, number of siblings, and depression), the adjusted ORs for poor family cohesion remained statistically significant. In a further analysis stratified for gender, this difference in perceived poor family cohesion was only noted in females.

    CONCLUSION: Teenage loss of a parent to cancer was associated with perceived poor family cohesion during teenage years. This was also noted in young adulthood among the maternally bereaved. Females were more likely to report poor family cohesion. Our results indicate a need for increased awareness of family cohesion in bereaved-to-be families with teenage offspring, with special attention to gender roles.

  • 23.
    Browall, Maria
    et al.
    Jönköping University; Göteborgs universitet.
    Pakpour, Amir H.
    Jönköping University; Qazvin University of Medical Sciences, Iran.
    Melin-Johansson, Christina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Lundh Hagelin, Carina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Österlind, Jane
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Henoch, Ingela
    Göteborgs universitet; Angereds närsjukhus.
    Development and Psychometric Evaluation of a New Short Version of the Swedish Frommelt Attitudes Toward Care of the Dying Scale2021In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 44, no 4, p. 305-313Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The Frommelt Attitudes Toward Care of the Dying (FATCOD) is widely used as a measure of attitudes toward care of dying patients. However, poor factor structure and item redundancy have been reported across the literature.

    OBJECTIVE: A short version of the questionnaire is needed, to facilitate effective assessments of the attitudes of those caring for dying patients. The purpose of this study was to develop a FATCOD-Short Form and to secure its psychometric properties.

    INTERVENTIONS/METHODS: Data gathered from 1000 nurses in previous studies were pooled and reanalyzed. Principal components analysis and confirmatory factor analysis were utilized to assess the factor structure of the FATCOD-30. A Rasch model was used to evaluate the measurement functioning of the scale.

    RESULTS: Of the original 30 items, 9 items of FATCOD were chosen for retention in the short form based on the principal components analysis, floor or ceiling effects, interitem correlations, and item-total correlation. All 9 items had good internal reliability. Both confirmatory factor analysis and Rasch analysis supported the unidimensionality of the FATCOD-Short Form.

    CONCLUSIONS: The 9-item FATCOD-Short Form demonstrates evidence of acceptable validity and reliability to identify nurses' attitudes toward caring for dying persons because of its brevity and comprehensive content.

    IMPLICATIONS FOR PRACTICE: When changing curricula in nursing education or implementing new procedures in nursing practice, it is important to have valid instruments to evaluate the results of the change. Such instruments should not be too lengthy or complicated. FATCOD-Short Form is a brief and valid instrument that can be easily used.

  • 24.
    Bylund-Grenklo, Tove
    et al.
    Högskolan i Gävle.
    Birgisdóttir, Dröfn
    Lunds universitet; Region Skåne.
    Beernaert, Kim
    Ghent University, Belgium; Vrije Universiteit Brussel (VUB), Belgium.
    Nyberg, Tommy
    University of Cambridge, United Kingdom; Karolinska institutet.
    Skokic, Viktor
    Karolinska institutet.
    Kristensson, Jimmie
    Lunds universitet; Region Skåne.
    Steineck, Gunnar
    Karolinska institutet; Göteborgs universitet.
    Fürst, Carl Johan
    Lunds universitet; Region Skåne.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Acute and long-term grief reactions and experiences in parentally cancer-bereaved teenagers2021In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 20, no 1, article id 75Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Previous research shows that many cancer-bereaved youths report unresolved grief several years after the death of a parent. Grief work hypothesis suggests that, in order to heal, the bereaved needs to process the pain of grief in some way. This study explored acute grief experiences and reactions in the first 6 months post-loss among cancer-bereaved teenagers. We further explored long-term grief resolution and potential predictors of having had "an okay way to grieve" in the first months post-loss.

    METHODS: We used a population-based nationwide, study-specific survey to investigate acute and long-term grief experiences in 622 (73% response rate) bereaved young adults (age > 18) who, 6-9 years earlier, at ages 13-16 years, had lost a parent to cancer. Associations were assessed using bivariable and multivariable logistic regression.

    RESULTS: Fifty-seven per cent of the participants reported that they did not have a way to grieve that felt okay during the first 6 months after the death of their parent. This was associated with increased risk for long-term unresolved grief (odds ratio (OR): 4.32, 95% confidence interval (CI): 2.99-6.28). An association with long-term unresolved grief was also found for those who reported to have been numbing and postponing (42%, OR: 1.73, 95% CI: 1.22-2.47), overwhelmed by grief (24%, OR: 2.02, 95% CI: 1.35-3.04) and discouraged from grieving (15%, OR: 2.68, 95% CI: 1.62-4.56) or to have concealed their grief to protect the other parent (24%, OR: 1.83, 95% CI: 1.23-2.73). Predictors of having had an okay way to grieve included being male, having had good family cohesion, and having talked about what was important with the dying parent.

    CONCLUSION: More than half of the cancer-bereaved teenagers did not find a way to grieve that felt okay during the first 6 months after the death of their parent and the acute grief experiences and reaction were associated with their grief resolution long-term, i.e. 6-9 years post-loss. Facilitating a last conversation with their dying parent, good family cohesion, and providing teenagers with knowledge about common grief experiences may help to prevent long-term unresolved grief.

  • 25.
    Bylund-Grenklo, Tove
    et al.
    Högskolan i Gävle.
    Birgisdóttir, Dröfn
    Lunds universitet; Region Skåne.
    Beernaert, Kim
    Ghent University, Belgium; Vrije Universiteit Brussel (VUB), Belgium.
    Nyberg, Tommy
    University of Cambridge, United Kingdom; Karolinska institutet.
    Skokic, Viktor
    Karolinska institutet.
    Kristensson, Jimmie
    Lunds universitet; Region Skåne.
    Steineck, Gunnar
    Karolinska institutet; Göteborgs universitet.
    Fürst, Carl Johan
    Lunds universitet; Region Skåne.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Correction to: Acute and long-term grief reactions and experiences in parentally cancer-bereaved teenagers.2021In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 20, no 1, article id 99Article in journal (Refereed)
  • 26.
    Cameron, Fiona
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Ersta sjukhus, Stockholm.
    Janze, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Ersta sjukhus, Stockholm.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Homecoming—Dignity Through Movement at the End of Life: A Qualitative Interview Study With Healthcare Professionals2021In: The American Journal of Hospice and Palliative Medicine, ISSN 1049-9091, The American journal of hospice & palliative care, ISSN 1938-2715, Vol. 39, no 1, p. 39-44Article in journal (Refereed)
    Abstract [en]

    AIM: To describe healthcare professionals' and volunteers' experiences of a pathway for movement on a hospice ward.

    METHOD: This was a qualitative study with an inductive approach. Data were collected in a hospice setting through 4 focus group interviews with healthcare professionals and volunteers (n = 12). The focus group participants varied in age, profession, and length of experience in palliative care. The interviews were audio recorded, transcribed and analyzed with qualitative content analysis.

    RESULTS: Dignity through movement at the end of life was the main theme, complemented by 4 sub-themes. Two descriptive sub-themes: "A practical tool to facilitate physical activity" and "Companionship and goals give meaning to the day," and 2 interpretative sub-themes: "Regaining control and having a choice" and "Feeling normal and alive" based on participants' views of patient experiences.

    SIGNIFICANCE OF RESULTS: Indications are that the pathway for movement addresses a wide range of experiences related to different aspects of being human in a difficult situation. Experiences of movement and physical activity can promote wellbeing, dignity, and a sense of feeling "at home" for patients within hospice care. The pathway for movement is simple to set up, offers access to appropriate physical activity and seems to benefit patients both in the early and later phases of palliative care.

  • 27.
    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.

  • 28.
    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.

  • 29.
    Carlsson, Tommy
    et al.
    Röda Korsets högskola; Uppsala universitet.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Peer support among parents of children with congenital heart defects: A qualitative analysis of written responses submitted via an online survey2020In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 76, no 12, p. 3528-3536Article in journal (Refereed)
    Abstract [en]

    AIM: To explore experiences of peer support among parents of children with congenital heart defects.

    DESIGN: A study analysing written responses to open-ended questions about peer support, collected via an online survey distributed in Sweden.

    METHODS: Respondents were recruited during 3 months in 2018 by means of convenience sampling, through ads via the Swedish foundation for families with children who have heart defects and two closed Facebook groups for peer support. An online survey containing open-ended questions was distributed and responses were analysed with systematic text condensation.

    RESULTS: Peer support was grounded in a mutual understanding among parents and involved highly appreciated emotional support. Listening to the stories of peers meant an opportunity to gain useful insights about what life is like for parents of children with heart defects. Receiving and providing peer support was described as rewarding on a personal level. Negative aspects of peer support were also described, which sometimes led to psychological distress and withdrawal from peer support activities.

    CONCLUSION: Peer support is emotionally relieving and appreciated among parents of children with congenital heart defects, who consider providing the support a rewarding responsibility. While peer support activities may have considerable benefits for individuals, it may also lead to psychological distress for some.

    IMPACT: This study addressed peer support among parents of children with congenital heart defects. The main findings illustrate the potential impact peer support can have on individuals and calls attention to the experienced benefits related to peer support activities, while also providing some insights regarding potential negative aspects. The findings have relevance for nurses, midwives, and other health professionals working in settings providing care for these families.

  • 30.
    Cleeve, Helena
    et al.
    Karolinska institutet.
    Tishelman, Carol
    Karolinska institutet.
    Macdonald, Alastair
    The Glasgow School of Art, United Kingdom.
    Lindqvist, Olav
    Karolinska institutet; Umeå universitet.
    Goliath, Ida
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet; Ersta sjukhus.
    Not just things: The roles of objects at the end of life.2018In: Sociology of Health and Illness, ISSN 0141-9889, E-ISSN 1467-9566, Vol. 40, no 4, p. 735-749Article in journal (Refereed)
    Abstract [en]

    While the study of objects in care contexts is an emerging research field, it is largely overlooked in end of life (EoL) care. In this study, we empirically and inductively explore the roles of objects at the EoL from the perspective of bereaved family members. Open individual interviews were conducted with 25 family members recruited from palliative in-patient and homecare units, as well as residential care facilities. After verbatim transcription, the interviews were analysed thematically. Based on these interviews, we conceptualise the roles of objects as relating to temporality, transformations of the everyday, and care. Through analysis we offer two main insights, the first relating to interdependency between objects and people, and the second to the recognition of objects as simultaneously flexible and stable in this interdependent relationship. The capacity and challenge of objects as part of EoL care lies in their ability to encompass various viewpoints and relationships simultaneously. This might provide valuable insights for staff caring for dying persons and their families. We propose that staff's ability to navigate objects in care practices could be meaningful in supporting the relationships between individuals in EoL situations.

  • 31.
    Cronfalk, Berit Seiger
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet; Høgskolen Stord/Haugesund, Norway.
    Norberg, Astrid
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Umeå universitet.
    Ternestedt, Britt-Marie
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    They are still the same: Family members' stories about their relatives with dementia disorders as residents in a nursing home.2018In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 32, no 1, p. 168-176Article in journal (Refereed)
    Abstract [en]

    In order to better understand the context of suffering from dementia disorders, greater efforts should be made to understand and identify what persons with such disorders experience when living in a nursing home. The aim of this qualitative study was to gain further understanding of how persons with dementia disorders experienced and coped with their changed life situation after being relocated to a nursing home as described by their family members' perceptions. Qualitative data were collected from ten interviews with family members and evaluated using content analysis. The main findings suggest that residents with dementia disorders largely maintained their personality intact throughout the trajectory of illness as they were able to keep their habits and interests. The local environment of the nursing home and the residents' relationships to staff were important in order to feel accepted. Four categories were discerned during the analysis: living in limbo; coming to peace; keeping old habits and relationships; and thoughts about impending death. It is reasonable to believe that old habits and interests may be preserved as the embodiment of such habits are deeply rooted and connected to a person's identity even when going through various changes and transitions in life. Therefore, to be accepted as the person you are requires care and services to specific needs, i.e. person-centeredness. Lack of understanding from staff may therefore have an adverse effect on a person's self-respect and identity. For that reason, staff needs to reflect on their attitudes and relationships as well as extending their knowledge about how to address sensitive topics such as the residents' impending death. To achieve this support from managers is pivotal. Future research should focus on support to nursing staff to further knowledge and understanding about the individual changes resident go through near the end of life.

  • 32.
    Dabaghi, Sahar
    et al.
    Shahid Beheshti University of Medical Sciences, Iran.
    Esmaielzadeh, Fatemeh
    Shahid Beheshti University of Medical Sciences, Iran.
    Rohani, Camelia
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Shahid Beheshti University of Medical Sciences, Iran.
    Application of Rasch Analysis for Development and Psychometric Properties of Adolescents' Quality of Life Instruments: A Systematic Review2020In: Adolescent Health, Medicine and Therapeutics, ISSN 1179-318X, Vol. 11, p. 173-197Article, review/survey (Refereed)
    Abstract [en]

    Background: Due to the importance of assessing quality of life (QoL) in healthy and ill adolescents, the evaluation of psychometric properties of these questionnaires is important.

    Objective: To investigate the application of Rasch analysis in psychometric assessment studies on adolescents' QoL instruments, and to evaluate the quality of reporting Rasch parameters in these studies.

    Methods: This systematic review was conducted by searching for papers in electronic databases PubMed, Web of Science, EMBASE, Cochrane Library and Scopus until December 2018.

    Results: After screening 122 papers, 31 remained in the study. Around 68% of the studies used the Rasch analysis for instrument testing and 32% for the development of new instruments. In 77.4% of studies, both classical and Rasch methods were used parallel to data analysis. In 32.2% of studies, healthy adolescents were the main target group. The most commonly used instrument in Rasch studies was, KIDSCREEN, administered in different countries. Six Rasch parameters were reported with a higher percentage in the studies. Major reported parameters of Rasch analysis were application of the software program (96.7%), test of item fit to the Rasch model (93.5%), unidimensionality (80.6%), type of the identified mathematical Rasch model (74.1%), threshold (58%) and differential item functioning (54.8%). Based on the psychometric evaluation of the QoL instruments, 71% of studies showed acceptable results.

    Conclusion: The application of the Rasch model for psychometric assessment of adolescents' QoL questionnaires has increased in recent decades. But, there is still no strong and commonly used critical appraisal tool or guideline for the evaluation of these papers.

  • 33.
    Doveson, Sandra
    et al.
    Karolinska institutet; Sophiahemmet högskola.
    Holm, Maja
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet högskola.
    Axelsson, Lena
    Sophiahemmet högskola.
    Fransson, Per
    Umeå universitet; Norrlands universitetssjukhus.
    Wennman-Larsen, Agneta
    Karolinska institutet; Sophiahemmet högskola.
    Facing life-prolonging treatment: The perspectives of men with advanced metastatic prostate cancer - An interview study2020In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 49, article id 101859Article in journal (Refereed)
    Abstract [en]

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

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

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

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

  • 34.
    Eilegård Wallin, Alexandra
    et al.
    Högskolan Dalarna.
    Udo, Camilla
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Högskolan Dalarna; Centrum för klinisk forskning (CKF), Dalarna.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Karolinska institutet.
    Cancer-bereaved siblings’ advice to peers: A nationwide follow-up survey2020In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 44, no 9, p. 561-568Article in journal (Refereed)
    Abstract [en]

    The aim of this nationwide survey was to explore, based on an open-ended question, cancer-bereaved siblings’ advice to peers with a brother or sister with cancer. Half of the advice related to being with the ill sibling and cherishing the time together. Other advice related to the value of communicating about the situation, letting go of guilt, and living life as usual. The results highlight the importance of health care professionals, family, and others facilitating for siblings to spend time together and communicate openly.

  • 35.
    Eilertsen, Mary-Elizabeth Bradley
    et al.
    Norge; Karolinska institutet.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Wallin, Alexandra Eilegård
    Högskolan Dalarna.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Cancer-bereaved siblings' positive and negative memories and experiences of illness and death: A nationwide follow-up.2018In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 16, no 4, p. 406-413Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Our aim was to explore bereaved siblings' positive and negative memories and experiences of their brother's or sister's illness and death.

    METHOD: In our nationwide Swedish study, 174 of 240 (73%) bereaved siblings participated, and 70% responded to two open-ended statements, which focused on siblings' positive and negative memories and experiences of illness and death. The data were analyzed using systematic text condensation.

    RESULTS: The bereaved siblings' responses were categorized into four different themes: (1) endurance versus vulnerability, (2) family cohesion versus family conflicts, (3) growth versus stagnation, and (4) professional support versus lack of professional support. The first theme expressed endurance as the influence that the ill siblings' strong willpower, good mood, and stamina in their difficult situation had on healthy siblings, whereas vulnerability was expressed as the feeling of emptiness and loneliness involved with having an ill and dying sibling. In the second theme, family cohesion was expressed as the bonds being strengthened between family members, whereas family conflicts often led siblings to feel invisible and unacknowledged. In the third theme, most siblings expressed the feeling that they grew as individuals in the process of their brother's or sister's illness and death, whereas others experienced stagnation because of the physical and mental distress they bore throughout this time, often feeling forgotten. In the last theme-professional support-most siblings perceived physicians and staff at the hospital as being warm, kind, and honest, while some siblings had negative experiences.

    SIGNIFICANCE OF RESULTS: The study shows that bereaved siblings can have positive memories and experiences. The significance of the positive buffering effect on bereaved siblings' own endurance, personal growth, family cohesion, and social support should be noted. This knowledge can be valuable in showing healthcare professionals the importance of supporting the siblings of children with cancer throughout the cancer trajectory and afterwards into bereavement.

  • 36.
    Eilertsen, M.E
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Norway.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Wallin, A.E
    Högskolan Dalarna.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    The Voices of Cancer-Bereaved Siblings: A Nation-Wide Long-Term Follow-up2018In: Pediatric blood & cancer: Supplement: Abstracts from the 50th Congress of the International Society of Paediatric Oncology (SIOP) Kyoto, Japan November 16–19, 2018, 2018, Vol. 65, p. 555-556, article id PO-297Conference paper (Refereed)
    Abstract [en]

    Background/Objectives: Siblings face many challenges and the aim of this paper is to explore bereaved siblings’ memories and experiences of their brother's or sister's illness and death.

    Design/Methods: In this nationwide Swedish study 174 of 240 (73 %) bereaved siblings participated and 70 % responded to two open‐ended questions on siblings’ positive and negative memories and experiences of illness and death. The data were analyzed using systematic text condensation.

    Results: The bereaved siblings’ responses were categorized into four different themes: endurance vs. vulnerability; family cohesion vs. family conflicts; growth vs. stagnation; professional support vs. lack of professional support. Endurance was expressed as the influence that the ill siblings’ willpower, good mood and stamina had on the healthy siblings, whereas vulnerability was expressed as the feeling of emptiness and loneliness. Family cohesion was expressed as the bonds being strengthened between family members, whereas family conflicts often led siblings to feel invisible and unacknowledged. In the third theme, most siblings expressed feeling that they grew as individuals in the process of their brother's or sister's illness and death, whereas others experienced stagnation because of the physical and mental distress they bore throughout this time, often feeling forgotten. In the last theme, most siblings perceived support by physicians and staff at the hospital as being warm, kind and honest, while some siblings had negative experiences.

    Conclusions: Our study shows that bereaved siblings can have positive memories and experiences, even though the death of a sibling is a distressing situation. The significance of the positive buffering effect on the bereaved siblings’ own endurance, personal growth, family cohesion and social support should be noted. The knowledge acquired by listening to the voices of bereaved siblings can be valuable in showing healthcare professionals the importance of supporting siblings of children with cancer throughout the cancer trajectory and afterwards into bereavement.

  • 37.
    Eklund, Rakel
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Barns erfarenheter av ”the Family Talk Intervention”: Att leva med en svårt sjuk förälder som vårdas inom specialiserad palliativ hemsjukvård2020Doctoral thesis, comprehensive summary (Other academic)
    Abstract [sv]

    När en förälder i en barnfamilj får en livshotande sjukdom förändras livet för allai familjen. Barn som lever i denna situation rapporterar att de upplever oro och skuld relaterat till förälderns sjukdom. Dessutom har barnen en ökad risk för psykisk ohälsa. Brist på kommunikation inom familjen om sjukdomen och ämnen relaterade till den, har visat sig ha en negativ påverkan på hälsan. Trots detta finns endast ett fåtal stödinterventioner utvärderade för barnfamiljer i palliativ vård, och ännu färre utvärderade utifrån barns erfarenheter. The Family Talk Intervention (FTI) är en familjecentrerad intervention, med barnen i fokus, som visat på positiva effekter gällande sjukdomsrelaterad information och ökad kommunikation för barnfamiljer inom psykiatrisk och somatisk vård. Det övergripande syftet med denna avhandling var att utforska barns erfarenheter av FTI och att leva med en svårt sjuk förälder som vårdas inom specialiserad palliativ hemsjukvård. Avhandlingen påvisar att de flesta barnen ville veta mer om sin förälders sjukdom. De yngre barnen rapporterade svårigheter både med att berätta om, och med att visa hur de själva mådde för någon i sin familj. De barn som deltog i FTI uppskattade strukturen och innehållet, de kände sig sedda, hörda och uppmärksammade under FTI, vilket skapade en känsla av tillit och trygghet.Alla barn blev lyssnade till och fick stöd att uttrycka både svårigheter och faktorer som kunde underlätta för dem. Under interventionen var det dock endast för ett fåtal barn som deras synpunkter och åsikter togs i beaktan, i enlighet med artikel 12 i barnkonventionen. De flesta barn rapporterade dock att FTI ökade kunskaperna om förälderns sjukdom och att det blev lättare att kommunicera med sina föräldrar. Genom sitt deltagande i FTI kunde barnen förbereda sig inför framtida sjukdomsrelaterade händelser, och hantering av konflikter underlättades.Resultatet visar att de behov barnen hade innan deltagande i FTI till stor del tillgodosågs under deltagandet. FTI innehar dock en struktur som ger föräldrarnas perspektiv större utrymme än barnens. Barnens perspektiv behöver således tas i beaktan i större utsträckning i syfte att det stöd som ges till dessa barn verkligen är till för dem. FTI tycks trots detta vara genomförbart och betydelsefullt för de barn som deltagit.

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  • 38.
    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.

  • 39.
    Eklund, Rakel
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Eisma, Maarten
    University of Groningen, NLD.
    Boelen, Paul
    Utrecht University, NLD; University of Groningen, NLD.
    Arnberg, Filip
    Uppsala universitet.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    A Mobile App for Prolonged Grief among Bereaved Parents: Study Protocol for a Randomized Controlled Trial2021Manuscript (preprint) (Other academic)
    Abstract [en]

    Introduction: Bereaved parents have elevated risk to develop mental health problems, yet, few studies have evaluated the effect of psychosocial interventions developed for bereaved parents. Cognitive behavioral therapy (CBT), both face-to-face or digitally delivered, has shown to be an effective intervention for prolonged grief symptoms. Self-help mobile apps offer various advantages and studies show improved mental health after app interventions. No app has yet been evaluated targeting prolonged grief in bereaved parents. Therefore, the aim of this planned study is to develop and examine the effectiveness of a CBT-based mobile app, called My Grief, in reducing symptoms of prolonged grief, as well as other psychological symptoms, in bereaved parents. Another aim is to assess users’ experiences and adverse events of My Grief.

    Methods and analysis: We will conduct a two-armed randomized waitlist-controlled trial. Parents living in Sweden, who lost a child to cancer between one and ten years ago, with elevated symptoms of prolonged grief, will be recruited to participate in the trial. The content of My Grief covers four main domains (Learn; Self-monitoring; Exercises; Get support) and builds on principles of CBT and the proven-effective PTSD Coach app. Participants in the intervention group will fill out online questionnaires at baseline and at 3-, 6- and 12-months follow-ups, and the waitlist-controls at baseline and at 3 months. The primary outcome will be prolonged grief symptoms at the 3 months follow-up. Secondary outcomes are posttraumatic stress and depression symptoms, quality of life, and cognitive behavioral variables (i.e., avoidance, rumination, negative cognitions).

    Ethics and dissemination: Ethical approval has been received from the Swedish Ethical Review Authority (project no. 2021-00770). If the app is shown to be effective, the app will be made publicly accessible on app stores, so that it can benefit other bereaved parents.

    Trial registration: Clinicaltrials.gov, identifier: NCT04552717.

  • 40.
    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.

  • 41.
    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.

  • 42.
    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.

  • 43.
    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.

  • 44.
    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 universitetssjukhuset.
    The Family Talk Intervention in Pediatric Oncology: Ill Children’s Descriptions of Feasibility and Potential Effects2022In: Journal of Pediatric Hematology/Oncology Nursing, ISSN 2752-7530, E-ISSN 2752-7549, Vol. 39, no 3, p. 143-154Article in journal (Refereed)
    Abstract [en]

    Background: There are few scientifically evaluated psychosocial interventions in pediatric oncology, despite the needs for families. The family-based psychosocial intervention "The Family Talk Intervention" (FTI) has shown promising results in other care contexts and was therefore pilot-tested in pediatric oncology. In this study, we examined the experiences of participating in FTI from ill children's perspectives regarding feasibility and potential effects.

    Methods: This pilot study involved 26 families in pediatric oncology that had participated in FTI. The paper is focused on those ill children who answered surveys (n = 19) and/or participated in interviews (n = 11) when FTI had ended. Data were analyzed with descriptive statistics and thematic analysis.

    Results: For most ill children, FTI came at the right time, included a reasonable number of meetings, and the length of the meetings was appropriate. The children felt listened to and understood by the interventionists and almost all children reported that FTI had helped them in some way. The children's perceptions indicated that FTI improved communication within the family and strengthened family relations. Children reported that the parents and their siblings seemed to feel better after participation and became more understanding.

    Discussion: The findings of this pilot study indicated that a full-scale study could be valuable from the ill children's perspective, as FTI was reported as feasible and had positive effects. The findings showed that FTI gave families an opportunity to open up communication about the illness, adjust their behaviors, and strengthen family relationships.

    Trial registration: ClinicalTrials.gov Identifier NCT03650530.

  • 45.
    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.

  • 46.
    Ericsson, Iréne
    et al.
    Jönköping University.
    Ekdahl, Anne W.
    Lunds universitet.
    Hellström, Ingrid
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    "To be seen": older adults and their relatives' care experiences given by a geriatric mobile team (GerMoT)2021In: BMC Geriatrics, ISSN 1471-2318, E-ISSN 1471-2318, Vol. 21, no 1, article id 636Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The proportion of older people in the population has increased globally and has thus become a challenge in health and social care. There is good evidence that care based on comprehensive geriatric assessment (CGA) is superior to the usual care found in acute hospital settings; however, the evidence is scarcer in community-dwelling older people. This study is a secondary outcome of a randomized controlled trial of community-dwelling older people in which the intervention group (IG) received CGA-based care by a geriatric mobile geriatric team (GerMoT). The aim of this study is to obtain a better understanding, from the patients' perspective, the experience of being a part of the IG for both the participants and their relatives.

    METHODS: Qualitative semistructured interviews of twenty-two community dwelling participants and eleven of their relatives were conducted using content analysis for interpretation.

    RESULTS: The main finding expressed by the participants and their relatives was in the form of feelings related to safety and security and being recognized. The participants found the care easily accessible, and that contacts could be taken according to needs by health care professionals who knew them. This is in accordance with person-centred care as recommended by the World Health Organisation (WHO) for older people in need of integrated care. Other positive aspects were recurrent health examinations and being given the time needed when seeking health care. Not all participants were positive as some found the information about the intervention to be unclear especially regarding whom to contact when in different situations.

    CONCLUSIONS: CGA-based care of community-dwelling older people shows promising results as the participants in GerMoT found the care was giving a feeling of security and safety. They found the care easily accessible and that it was provided by health care professionals who knew them as a person and knew their health care problems. They found this to be in contrast to the usual care provided, but GerMoT care did not fulfill some people's expectations.

  • 47.
    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.

  • 48.
    Fristedt, Sofi
    et al.
    Jönköping University; Lunds universitet.
    Grynne, Annika
    Jönköping University.
    Melin-Johansson, Christina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Henoch, Ingela
    Göteborgs universitet.
    Lundh Hagelin, Carina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Karolinska institutet.
    Browall, Maria
    Jönköping University; Göteborgs universitet.
    Registered nurses and undergraduate nursing students' attitudes to performing end-of-life care2021In: Nurse Education Today, ISSN 0260-6917, E-ISSN 1532-2793, Vol. 98, article id 104772Article in journal (Refereed)
    Abstract [en]

    Registered Nurses (RNs) are in the immediate position to provide End-of-life (EOL) care and counselling for patients and families in various settings. However, EOL-care often creates feelings of uncertainty and inadequacy linked to inexperience, lack of education, and attitude. To identify and describe factors associated with RNs' attitudes towards EOL-care, and to identify whether and how these attitudes differ from undergraduate nursing students' (UNSs) attitudes, a descriptive and comparative, quantitative study was performed. The FATCOD-instrument, focusing on attitude towards EOL-care, was used and the results analysed with descriptive and nonparametric statistics. In total, 287 RNs in 14 different specialist programmes, and 124 UNSs participated. A statistically significant difference (p = 0.032) was found in attitude towards EOL-care based on clinical experience. RNs in "Acute Care" and "Paediatric & Psychiatry Care" specialist programmes had a less positive attitude towards EOL-care (compared to RNs in other specialist programmes), while RNs attending the Palliative Care programme had the most positive attitudes. RNs and UNSs' scores differed statistically significantly in 17 out of 30 FATCOD variables. Finally, the results imply that there is a need for greater emphasis on further continuing education within EOL care for RNs working in all types of clinical specialities to encourage RNs talking about death and to enhance attitudes towards EOL care.

  • 49.
    Frögli, Elin
    et al.
    Karolinska Institutet.
    Rudman, Anna
    Karolinska Institutet.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Gustavsson, Petter
    Karolinska institutet.
    Problems with task mastery, social acceptance, and role clarity explain nurses’ symptoms of burnout during the first professional years: A longitudinal study2019In: Work: A journal of Prevention, Assessment and rehabilitation, ISSN 1051-9815, E-ISSN 1875-9270, Vol. 62, no 4, p. 573-584Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:Symptoms of burnout among new professionals is a well-recognized problem but there is a lack of prevention programs. Effective interventions are based on an understanding of the processes that contribute to the development of a problem and suggest how it may be addressed. OBJECTIVE:Using the framework of organizational socialization, the objective of this study was to investigate if development of the socialization processes role clarity, social acceptance, and task mastery affects development of symptoms of burnout among new professionals and may specifically be targeted in transition-to-practice programs to prevent symptoms of burnout from occurring. We conducted this investigation by examining the relations between role clarity, social acceptance, task mastery, and symptoms of burnout the first year after professional entry, as well as the relations between changes in the socialization processes and changes in symptoms of burnout during the first three years following professional entry in a sample of new nurses. METHOD:Relationships between the socialization processes and symptoms of burnout were modeled using a linear latent growth model and data from a nationally representative sample of 1210 new registered nurses. RESULTS:Role clarity, social acceptance, and task mastery were related to symptoms of burnout cross-sectionally and longitudinally. Task mastery was the most important explanatory variable. CONCLUSIONS:The results suggest that an intervention designed to support the development of the socialization processes may be effective in preventing symptoms of burnout among new nurses. Interventions targeting role clarity, social acceptance, and task mastery during the first professional year may be expected to have effects during the following years as well, extending the value and importance of such interventions.

  • 50.
    Godskesen, Tove
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Frygner Holm, Sara
    Uppsala universitet.
    Höglund, Anna T.
    Uppsala universitet.
    Eriksson, Stefan
    Uppsala universitet.
    YouTube as a source of information on clinical trials for paediatric cancer2023In: Information, Communication and Society, ISSN 1369-118X, E-ISSN 1468-4462, Vol. 26, no 4, p. 716-729Article in journal (Refereed)
    Abstract [en]

    Little is known about the information parents of children with cancer find when searching for clinical trials information on YouTube. Thus, this study aimed to analyse the content, quality and reliability of YouTube videos focused on clinical trials for paediatric cancer. A descriptive cross-sectional design was used, and YouTube was searched using the phrases ‘clinical trials for children with cancer’ and ‘paediatric cancer clinical trials’. Videos that met inclusion criteria were assessed using the instruments Global Quality Scale and DISCERN. About half of the examined videos were in the GQS excellent-quality group and exhibited a total of 84,804 views. The mean time for videos was 5.7 minutes, they originated from the US or UK, were uploaded after 2016, and had a cancer centre/foundation or children hospital as video source. Half of them were focusing on early experimental trials and had a positive tone. Twenty percent were classified as useful without serious shortcomings, almost 50% as misleading with serious shortcomings, and 30% as inappropriate sources of information. In conclusion, most YouTube videos on paediatric cancer trials are not very informative and fall short of what could ethically be required regarding their facilitation of informed decision-making.

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