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  • 1.
    Adolfsson, Karin
    et al.
    Göteborgs universitet; Länssjukhuset Ryhov, Region Jönköpings län.
    Kreicbergs, Ulrika
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Bratthäll, Charlotte
    Länssjukhuset i Kalmar.
    Holmberg, Erik
    Göteborgs universitet; Region Västra Götaland.
    Björk-Eriksson, Thomas
    Göteborgs universitet; Region Västra Götaland.
    Stenmarker, Margaretha
    Göteborgs universitet; Region Jönköpings län; Linköpings universitet.
    Referral of patients with cancer to palliative care: Attitudes, practices and work-related experiences among Swedish physicians2022In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 31, no 6, article id e13680Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: This study aimed to explore the attitudes, practices and work-related experiences among Swedish physicians regarding the referral process, integration and transition between oncology care and palliative care (PC).

    METHODS: A cross-sectional online survey was performed with a study-specific questionnaire in 2016-2017 in south-eastern Sweden. Physicians working with cancer patients within surgical specialties, medical specialties and paediatric oncology participated.

    RESULTS: The vast majority of the 130 participating physicians (99.2%) stated that PC was beneficial for the patient and were positive about early integration of PC (65.5%). Still, only 27.6% of the participants introduced PC at an early stage of non-curable disease. However, paediatric oncologists had a very early introduction of PC in comparison with medical specialties (p = 0.004). Almost 90% of the study population said they wanted to know that the patient had been taken care of by another care facility.

    CONCLUSIONS: Despite the physicians' positive attitude towards early integration and referral to PC, they often acted late in the disease trajectory. This late approach can reduce the patient's opportunity of improving quality of life during severe circumstances. There is a need for in-depth knowledge of the physicians' challenges in order to bridge the gap between intentions and actions.

  • 2.
    Akkawi El Edelbi, Ranaa
    et al.
    Karolinska Institutet; Karolinska universitetssjukhuset.
    Eksborg, Staffan
    Karolinska Institutet; Karolinska universitetssjukhuset.
    Kreicbergs, Ulrika
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Lövgren, Malin
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Wallén, Klara
    Karolinska universitetssjukhuset.
    Ekman, Jennie
    Karolinska universitetssjukhuset.
    Lindemalm, Synnöve
    Karolinska universitetssjukhuset; Karolinska institutet.
    Parents' experiences of handling oral anticancer drugs at home: 'It all falls on me …'2023In: Journal of Evaluation In Clinical Practice, ISSN 1356-1294, E-ISSN 1365-2753, Vol. 29, no 1, p. 94-100Article in journal (Refereed)
    Abstract [en]

    AIM: The aim of this study was to describe the experiences of parents handling oral anticancer drugs in a home setting.

    METHODS: Parents of children with cancer were recruited from a paediatric oncology ward in Sweden to participate in an interview. The interviews were transcribed verbatim and subjected to qualitative content analysis.

    RESULTS: We found the following categories and subcategories: parents' views on the provided information-lack of, too little or contradictory information, and parents' preferences for information delivery; safety over time; correct drug dose; and drug administration. As time passed, most parents adapted to their child's illness, felt safer and found it easier to take in and process any given information. Parents preferred information in different formats (written, movie clips and orally) and in their mother tongue. Many parents were aware of the importance of giving an accurate dose to their child and described the process of drug administration as overwhelming.

    CONCLUSION: Parents need to be provided with accurate, timely, nonconflicting and repeated information-in different forms and in their mother tongue-on how to handle oral anticancer drugs at home.

  • 3.
    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)
  • 4.
    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.

  • 5.
    Alvariza, Anette
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Lövgren, Malin
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Bylund-Grenklo, Tove
    Karolinska institutet.
    Hakola, Pia
    Stockholms Sjukhem.
    Fürst, Carl Johan
    Lunds universitet; Region Skåne.
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    How to support teenagers who are losing a parent to cancer: Bereaved young adults' advice to healthcare professionals-A nationwide survey.2016In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 15, no 3, p. 313-319Article in journal (Refereed)
    Abstract [en]

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

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

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

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

  • 6.
    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.

  • 7.
    Ayoub, Maria
    et al.
    School of Health and Welfare, Dalarna University, Falun.
    Udo, Camilla
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. School of Health and Welfare, Dalarna University, Falun; Center for Clinical Research Dalarna, Uppsala University, Falun.
    Årestedt, Kristofer
    Department of Health and Caring Sciences, Faculty of Health and Life Science, Linnaeus University, Växjö.
    Kreicbergs, Ulrika
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Department of Women’s and Children’s Health, Childhood Cancer Research Unit, Karolinska Institute, Solna; Louis Dundas Center, Great Ormond Street Institute of Child Health, University College London, London, UK.
    Lövgren, Malin
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Advanced Pediatric Home Care, Astrid Lindgren Children’s Hospital, Karolinska University Hospital.
    The Family Talk Intervention in Pediatric Oncology: Potential Effects Reported by Parents2024In: Children, E-ISSN 2227-9067, Vol. 11, no 1, article id 95Article in journal (Refereed)
    Abstract [en]

    Background: Childhood cancer impacts the family system and has psychosocial consequences for all family members. For the parents, the ill child, and the siblings to be able to adjust to this challenging situation, the whole family needs access to psychosocial support. However, only a few such family interventions in pediatric oncology have been evaluated. The aim of this study was to explore the potential effects of a family-centered intervention, the Family Talk Intervention (FTI), in pediatric oncology from the parents’ perspectives.

    Methods: A concurrent mixed methods design was used for this study. Data were derived from a pilot study of 26 families recruited from one pediatric oncology center in Sweden. This study focused on questionnaire and interview data from 52 parents.

    Results: After participation in FTI, the parents felt more satisfied with the conversations within the family about the illness. FTI also contributed to strengthened family togetherness, including more open communication and improved family relations, as described by the parents. Parents further expressed that they felt more empowered in their parenting role following FTI.

    Conclusions: The findings regarding FTI’s ability to improve family communication and family relations, thus strengthening family togetherness in families with childhood cancer, are promising. This provides motivation for a large-scale study of FTIs in pediatric oncology.

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  • 8.
    Bartholdson, Cecilia
    et al.
    Karolinska Institutet; Karolinska Universitetssjukhuset.
    Kreicbergs, Ulrika
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Institutet.
    Sveen, Josefin
    Uppsala universitet.
    Lövgren, Malin
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Universitetssjukhuset.
    Pohlkamp, Lilian
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Communication about diagnosis and prognosis: A population-based survey among bereaved parents in pediatric oncology2022In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 31, no 12, p. 2149-2158Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION: When a child is diagnosed with cancer, the whole family is affected, and parents struggle to grasp challenging information regarding diagnosis and prognosis. Most parents and children want honest communication and openness, yet this remains a complex and challenging task for healthcare professionals.

    OBJECTIVES: To describe bereaved mothers' and fathers' reports of communication of their child's cancer diagnosis and when the illness became incurable.

    METHODS: Data from a Swedish population-based survey conducted in 2016, including 135 mothers and 97 fathers who had lost a child to cancer 1-5 years earlier, were studied regarding the parents' reports of communication about their child's illness.

    RESULTS: A vast majority of parents wants information when their child's illness becomes incurable, and this need is generally met. However, fathers to a lesser extent than mothers, reported that they were informed about it. According to parents' reports 87 % of children received diagnostic information and 44 % of the children received prognostic information.

    CONCLUSION: A vast majority of both mothers and fathers would like to know when their child's illness becomes incurable, yet it remains unknown to what extent they want their child to be informed. This article is protected by copyright. All rights reserved.

  • 9.
    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.

  • 10.
    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.

  • 11.
    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.

  • 12.
    Bylund Grenklo, Tove
    et al.
    Karolinska Institutet, Stockholms Sjukhem.
    Kreicbergs, Ulrika
    Karolinska Institutet, Sophiahemmet.
    Hauksdóttir, Arna
    Island. Göteborgs universitet, Sverige..
    Valdimarsdóttir, Unnur A
    Island.
    Nyberg, Tommy
    Karolinska Institutet.
    Steineck, Gunnar
    Karolinska Institutet, Göteborgs universitet.
    Fürst, Carl Johan
    Karolinska Institutet, Stockholms Sjukhem.
    Self-injury in teenagers who lost a parent to cancer: a nationwide, population-based, long-term follow-up.2013In: JAMA pediatrics, ISSN 2168-6203, E-ISSN 2168-6211, Vol. 167, no 2, p. 133-140Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To investigate the risk of self-injury in parentally cancer-bereaved youth compared with their nonbereaved peers.

    DESIGN: Population-based study of cancer-bereaved youth and a random sample of matched population controls.

    SETTING: Sweden in 2009 and 2010.

    PARTICIPANTS: A total of 952 youth (74.8%) confirmed to be eligible for the study returned the questionnaire: 622 (73.1%) of 851 eligible young adults who lost a parent to cancer between the ages of 13 and 16 years, in 2000 to 2003, and 330 (78.4%) of 451 nonbereaved peers.

    MAIN EXPOSURE: Cancer bereavement or nonbreavement during the teenage years.

    MAIN OUTCOME MEASURES: Unadjusted and adjusted odds ratios (ORs) of self-injury after January 1, 2000.

    RESULTS: Among cancer-bereaved youth, 120 (19.5%) reported self-injury compared with 35 (10.6%) of their nonbereaved peers, yielding an OR of 2.0 (95% CI, 1.4-3.0). After controlling for potential confounding factors in childhood (eg, having engaged in self-destructive behavior, having been bullied, having been sexually or physically abused, having no one to share joys and sorrows with, and sex), the adjusted OR was 2.3 (95% CI, 1.4-3.7). The OR for suicide attempts was 1.6 (95% CI, 0.8-3.0).

    CONCLUSIONS: One-fifth of cancer-bereaved youth reported self-injury, representing twice the odds for self-injury in their nonbereaved peers, regardless of any of the adjustments we made. Raised awareness on a broad basis in health care and allied disciplines would enable identification and support provision to this vulnerable group.

  • 13.
    Bylund Grenklo, Tove
    et al.
    Karolinska Institutet, Stockholms Sjukhem.
    Kreicbergs, Ulrika
    Karolinska Institutet, Sophiahemmet.
    Valdimarsdóttir, Unnur A
    Island, USA.
    Nyberg, Tommy
    Karolinska Institutet.
    Steineck, Gunnar
    Karolinska Institutet, Göteborgs universitet.
    Fürst, Carl Johan
    Karolinska Institutet, Stockholms sjukhem, Lunds universitet.
    Self-injury in youths who lost a parent to cancer: nationwide study of the impact of family-related and health-care-related factors.2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 9, p. 989-997Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Self-injury, a manifestation of severe psychological distress, is increased in cancer-bereaved youths. Little is known about the potential influence on the risk for self-injury of factors that could be clinically relevant to and modifiable by the health-care professionals involved in the care of the dying parent.

    METHODS: In a nationwide population-based anonymous study, 622 (73.1%) youths (aged 18-26) who, 6 to 9 years earlier at ages 13 to 16, had lost a parent to cancer answered study-specific questions about self-injury and factors related to the family and parental health care.

    RESULTS: Univariable analyses showed that the risk for self-injury was increased among cancer-bereaved youths who reported poor family cohesion the years before (relative risk [RR], 3.4, 95% confidence interval [CI], 2.5-4.6) and after the loss (RR, 3.3, 95% CI, 2.4-4.4), distrust in the health care provided to the dying parent (RR, 1.7, 95% CI, 1.2-2.4), perceiving poor health-care efforts to cure the parent (RR 1.5, 95% CI, 1.1-2.1) and poor efforts to prevent suffering (RR, 1.6, 95% CI, 1.1-2.4), that at least one of their parents had been depressed or had troubles in life (RR, 1.5, CI, 1.1-2.1) and believing 3 days before the loss that the treatment would probably cure the parent (RR, 1.6, CI, 1.1-2.3). In the total multivariable models, only poor family cohesion before and after the loss remained statistically significantly associated with self-injury.

    CONCLUSION: Poor family cohesion before and after the loss of a parent to cancer is associated with an increased risk of self-injury in teenage children.

  • 14.
    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.

  • 15.
    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)
  • 16.
    Bylund-Grenklo, Tove
    et al.
    Karolinska Institutet; Linnéuniversitetet.
    Fürst, C J
    Lunds universitet.
    Nyberg, T
    Karolinska Institutet.
    Steineck, G
    Karolinska Institutet; Göteborgs universitet.
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Institutet.
    Unresolved grief and its consequences: A nationwide follow-up of teenage loss of a parent to cancer 6-9 years earlier2016In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 24, no 7, p. 3095-3103Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The early loss of a parent is a tragedy and a serious life event. This study investigated grief resolution and morbidity in cancer-bereaved teenagers 6 to 9 years after the loss of a parent to cancer.

    METHODS: In a nationwide population-based study of 622 of 851 (73 %) youths who as teenagers 6 to 9 years earlier had lost a parent to cancer, we explored the magnitude of unresolved grief and its association with psychological and physiological morbidity. Participants answered a study-specific anonymous questionnaire including questions about if they had worked through their grief and about their current health.

    RESULTS: Six to nine years post-loss 49 % reported unresolved grief (8 % no and 41 % a little grief resolution). They had, in comparison with youths reporting resolved grief, statistically significantly elevated risks, e.g. for insomnia (sons' relative risk (RR) 2.3, 95 % CI 1.3-4.0; daughters' RR 1.7, 95 % CI 1.1-2.7), fatigue (sons' RR 1.8, 95 % CI 1.3-2.5; daughters' RR 1.4, 95 % CI 1.1-1.7) and moderate to severe depression, i.e. score >9, PHQ-9 (sons' RR 3.6, 95 % CI 1.4-8.8; daughters' RR 1.8, 95 % CI 1.1-3.1). Associations remained for insomnia in sons, exhaustion in daughters and fatigue in both sons and daughters when depression, negative intrusive thoughts and avoiding reminders of the parents' disease or death were included in a model.

    CONCLUSIONS: Approximately half of cancer-bereaved youth report no or little grief resolution 6 to 9 years post-loss, which is associated with fatigue, sleeping problems and depressive symptoms.

  • 17.
    Bylund-Grenklo, Tove
    et al.
    Karolinska Institutet; Stockholms Sjukhem .
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Uggla, Charlotta
    Karolinska Institutet .
    Valdimarsdóttir, Unnur A
    Centre of Public Health Sciences, Faculty of Medicine, University of Iceland, Reykjavík, Iceland; Department of Epidemiology, Harvard School of Public Health, Boston, USA.
    Nyberg, Tommy
    Karolinska Institutet.
    Steineck, Gunnar
    Karolinska Institutet; Göteborgs universitet.
    Fürst, Carl Johan
    Karolinska Institutet; Stockholms Sjukhem Foundation; Lunds universitet.
    Teenagers want to be told when a parent's death is near: A nationwide study of cancer-bereaved youths' opinions and experiences2015In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 54, no 6, p. 944-950Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: We aimed to investigate cancer-bereaved youths' opinions and experiences of being told about a parent's imminent death from cancer and of barriers to this communication.

    MATERIAL AND METHODS: This nationwide population-based survey included 622/851 (73%) youths (aged 18-26) who at age 13-16, 6-9 years earlier had lost a parent to cancer.

    RESULTS: In total 595 of 610 (98%) of the participants stated that teenage children should be informed when the parent's death was imminent (i.e. a matter of hours or days, not weeks). 59% stated that they themselves had been told this, 37% by the parents, 7% by parents and healthcare professionals together and 8% by professionals only. Frequent reasons for why the teenager and parents did not talk about imminent death before loss were that one (n=106) or both (n=25) of the parents together with the teenage child had pretended that the illness was not that serious, or that none of the parents had been aware that death was imminent (n=80). Up to a couple of hours before the loss, 43% of participants had not realized that death was imminent.

    CONCLUSION: In this population-based study virtually all youth who at ages 13-16 had lost a parent to cancer afterwards stated that teenagers should be told when loss is near, i.e. a matter of hours or days, not weeks. Many stated that they had not been given this information and few were informed by professionals, with implications for future improvements in end-of-life care of patients with teenage children.

  • 18.
    Dunberger, Gail
    et al.
    Karolinska institutet.
    Thulin, Helena
    Karolinska institutet.
    Waldenström, Ann-Charlotte
    Göteborgs universitet.
    Lind, Helena
    Karolinska institutet.
    Henningsohn, Lars
    Karolinska institutet.
    Åvall-Lundqvist, Elisabeth
    Karolinska institutet.
    Steineck, Gunnar
    Karolinska institutet, Göteborgs universitet.
    Kreicbergs, Ulrika
    Karolinska institutet, Sophiahemmet.
    Cancer survivors' perception of participation in a long-term follow-up study.2013In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 39, no 1, p. 41-45Article in journal (Refereed)
    Abstract [en]

    Every year medical researchers make contact with a large number of cancer survivors with the aim of evaluating cancer treatment. For this reason we decided to investigate how Swedish cancer survivors perceived their participation in research studies focusing on the long-term consequences of being a survivor of gynaecological or urinary bladder cancer. Data were collected by means of two study-specific postal questionnaires, both consisting of questions covering physical symptoms, well-being and the experience of being a cancer survivor. Both questionnaires also included questions evaluating the participants' experience of being research subjects. The questionnaires were developed in close co-operation with cancer survivors. The study population consisted of 1068 cancer survivors. Of these, 95% (n=1003) reported that they thought the study was valuable and 54% (n=559) that they had been positively affected by participating. Four per cent (n=39) expressed that they had been negatively affected by their participation in the study. The vast majority of the cancer survivors thought that participating in their particular study was valuable.

  • 19.
    Dussel, Veronica
    et al.
    USA.
    Kreicbergs, Ulrika
    Karolinska institutet. Dana-Farber Cancer Institute, Boston, USA..
    Hilden, Joanne M
    USA.
    Watterson, Jan
    USA.
    Moore, Caron
    USA.
    Turner, Brian G
    USA.
    Weeks, Jane C
    USA.
    Wolfe, Joanne
    USA.
    Looking beyond where children die: Determinants and effects of planning a child's location of death.2009In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 37, no 1, p. 33-43Article in journal (Refereed)
    Abstract [en]

    While dying at home may be the choice of many, where people die may be less important than argued. We examined factors associated with parental planning of a child's location of death (LOD) and its effects on patterns of care and parent's experience. In a cross-sectional study of 140 parents who lost a child to cancer at one of two tertiary-level U.S. pediatric hospitals, 88 (63%) planned the child's LOD and 97% accomplished their plan. After adjusting for disease and family characteristics, families whose primary oncologist clearly explained treatment options during the child's end of life and who had home care involved were more likely to plan LOD. Planning LOD was associated with more home deaths (72% vs. 8% among those who did not plan, P<0.001) and fewer hospital admissions (54% vs. 98%, P<0.001). Parents who planned were more likely to feel very prepared for the child's end of life (33% vs. 12%, P=0.007) and very comfortable with LOD (84% vs. 40%, P<0.001), and less likely to have preferred a different LOD (2% vs. 46%, P<0.001). Among the 73 nonhome deaths, planning was associated with more deaths occurring in the ward than in the intensive care unit or other hospital (92% vs. 33%, P<0.001), and fewer children being intubated (21% vs. 48%, P=0.029). Comprehensive physician communication and home care involvement increase the likelihood of planning a child's LOD. Opportunity to plan LOD is associated with outcomes consistent with high-quality palliative care, even among nonhome deaths, and thus may represent a more relevant outcome than actual LOD.

  • 20.
    Eilegård, Alexandra
    et al.
    Karolinska institutet.
    Kreicbergs, Ulrika
    Karolinska institutet.
    Risk of parental dissolution of partnership following the loss of a child to cancer: A population-based long-term follow-up.2010In: Archives of Pediatrics & Adolescent Medicine, ISSN 1072-4710, E-ISSN 1538-3628, Vol. 164, no 1, p. 100-101Article in journal (Refereed)
  • 21.
    Eilegård, Alexandra
    et al.
    Karolinska institutet, Sophiahemmet högskola.
    Steineck, Gunnar
    Göteborgs universitet, Karolinska institutet.
    Nyberg, Tommy
    Göteborgs universitet, Karolinska institutet.
    Kreicbergs, Ulrika
    Karolinska institutet, Sophiahemmet högskola, Göteborgs universitet.
    Bereaved siblings' perception of participating in research: A nationwide study2013In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 22, no 2, p. 411-416Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The objective of the present study is to examine bereaved siblings' perception of research participation.

    METHODS: A Swedish nationwide study on avoidable and modifiable health care-related factors in paediatric oncology among bereaved siblings who lost a brother or sister to cancer between the years 2000 and 2007 was conducted. Data are presented as proportions, and the differences between groups were statistically tested at the 5% significant level using Fisher's exact test.

    RESULTS: Out of 240 eligible siblings, 174 responded (73 %). None of the siblings (0/168) thought their participation would affect them negatively in the long term. However, 13% (21/168) stated it was a negative experience to fill out the questionnaire, whereas 84% (142/169) found it to be a positive experience. Women were more likely to report their participation as positive in a long-term perspective compared with men (p = 0.018).

    CONCLUSIONS: None of the bereaved siblings in this Swedish nationwide study anticipated any long-term negative effect from their research participation. A majority reported it as positive to revisit their needs and experiences throughout their brother or sister's illness and death 2-9 years following the loss. We believe that the stepwise approach used in this study contributed to the high acceptance.

  • 22.
    Eilegård, Alexandra
    et al.
    Karolinska institutet, Sophiahemmet.
    Steineck, Gunnar
    Göteborgs universitet, Karolinska institutet.
    Nyberg, Tommy
    Karolinska institutet.
    Kreicbergs, Ulrika
    Karolinska institutet, Sophiahemmet.
    Psychological health in siblings who lost a brother or sister to cancer 2 to 9 years earlier.2013In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 22, no 3, p. 683-691Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The objective of this study was to assess long-term psychological distress in siblings who lost a brother or sister to cancer 2 to 9 years earlier, as compared with a control group of non-bereaved siblings from the general population.

    METHODS: During 2009, we conducted a nationwide follow-up study in Sweden by using an anonymous study-specific questionnaire. Siblings who had lost a brother or sister to cancer between the years 2000 and 2007 and also a control group of non-bereaved siblings from the general population were invited to participate. The Hospital Anxiety and Depression Scale (HADS) was used to measure psychological distress, and to test for differences in the ordinal outcome responses between the groups, we used Wilcoxon-Mann-Whitney rank-sum test.

    RESULTS: Among the bereaved siblings, 174/240 (73%) participated and 219/293 (75%) among the non-bereaved. Self-assessed low self-esteem (p = 0.002), difficulties falling asleep (p = 0.005), and low level of personal maturity (p = 0.007) at follow-up were more prevalent among bereaved siblings. However, anxiety (p = 0.298) and depression (p = 0.946), according to HADS, were similar.

    CONCLUSION: Bereaved siblings are at increased risk of low self-esteem, low level of personal maturity and difficulties falling asleep as compared with non-bereaved peers. Yet, the bereaved were not more likely to report anxiety or depression.

  • 23.
    Eilegård Wallin, Alexandra
    et al.
    Karolinska Institutet; Högskolan Dalarna.
    Steineck, Gunnar
    Göteborgs universitet; Karolinska institutet.
    Nyberg, Tommy
    Karolinska Institutet.
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Institutet.
    Insufficient communication and anxiety in cancer-bereaved siblings: A nationwide long-term follow-up2016In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 14, no 5, p. 488-494Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The purpose of this study was to examine siblings' long-term psychological health in relation to their perception of communication with their family, friends, and healthcare professionals during a brother or sister's last month of life.

    METHOD: A nationwide questionnaire study was conducted during 2009 in Sweden of individuals who had lost a brother or sister to cancer within the previous two to nine years. Of the 240 siblings contacted, 174 (73%), participated. The Hospital Anxiety and Depression Scale (HADS) was employed to assess psychological health (anxiety). The data are presented as proportions (%) and relative risks (RR) with a 95% confidence interval (CI 95%).

    RESULTS: Siblings who were not satisfied with the amount they talked about their feelings with others during their brother or sister's last month of life were more likely to report anxiety (15/58, 26%) than those who were satisfied (13/115, 11%; RR = 2.3(1.2-4.5)). The same was true for those who had been unable to talk to their family after bereavement (RR = 2.5(1.3-4.8)). Avoiding healthcare professionals for fear of being in their way increased siblings' risk of reporting anxiety at follow-up (RR = 2.2(1.1-4.6)), especially avoidance in the hospital setting (RR = 6.7(2.5-18.2)). No such differences were seen when the ill brother or sister was cared for at home.

    SIGNIFICANCE OF RESULTS: Long-term anxiety in bereaved siblings might be due to insufficient communication. Avoiding healthcare professionals, especially when the brother or sister is cared for at the hospital, may also increase the risk of anxiety.

  • 24.
    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.

  • 25.
    Eilertsen, Mary-Elizabeth Bradley
    et al.
    Sør-Trøndelag University College, Trondheim, Norway .
    Eilegård, Alexandra
    Karolinska Institutet.
    Steineck, Gunnar
    Karolinska Institutet, Göteborgs universitet .
    Nyberg, Tommy
    Karolinska Institutet.
    Kreicbergs, Ulrika
    Karolinska Institutet, Sophiahemmet.
    Impact of social support on bereaved siblings' anxiety: a nationwide follow-up.2013In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 30, no 6, p. 301-310Article in journal (Refereed)
    Abstract [en]

    PURPOSE: To assess adolescent and young adult siblings' perception of social support prior to and following the loss of their brother or sister to cancer, 2 to 9 years earlier, and their anxiety at follow-up.

    METHOD: In 2009, 174 (73%) bereaved siblings (12-25 years) participated in a nationwide, long-term follow-up study in Sweden using an anonymous study-specific questionnaire. The Hospital Anxiety and Depression Scale was used to measure self-assessed anxiety.

    RESULTS: Siblings had a higher risk of anxiety if they perceived their need for social support was unsatisfied during their brother or sisters' last month before death, relative risk (RR) = 3.6 (95% confidence interval [CI] = 1.8-7.3); time after death, RR = 2.9 (95% CI = 1.5-5.6); and at follow-up, RR = 3.8 (95% CI = 2.0-7.2). Furthermore, a higher risk for anxiety was shown for siblings if they did not perceive that their parents and neighbors cared for them after their brother or sisters' death, RR = 2.7 (95% CI = 1.3-5.5), RR = 5.4 (95% CI = 1.3-21.9), respectively.

    CONCLUSION: Bereaved siblings had a greater probability to report self-assessed anxiety if they perceived that their need for social support was not satisfied prior to and following death. Information from both nurses and other health care professionals to families about the impact of social support may contribute to lessen the siblings' risk of anxiety.

  • 26.
    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.

  • 27.
    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.

  • 28.
    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.

  • 29.
    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.

  • 30.
    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.

  • 31.
    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.

  • 32.
    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.

  • 33.
    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.

  • 34.
    El Malla, Hanan
    et al.
    Göteborgs universitet.
    Kreicbergs, Ulrika
    Karolinska institutet, Sophiahemmet.
    Steineck, Gunnar
    Göteborgs universitet, Karolinska institutet.
    Wilderäng, Ulrica
    Göteborgs universitet.
    Elborai, Yasser El Sayed
    Cairo University Hospital, Egypt. National Cancer Institute, Cairo, Egypt.
    Ylitalo, Nathalie
    Göteborgs universitet, Karolinska institutet.
    Parental trust in health care: A prospective study from the Children's Cancer Hospital in Egypt2013In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 22, no 3, p. 548-554Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Patient-physician communication and patient satisfaction are important elements of cancer care. Trust is considered to be crucial for the patient-physician relationship, yet little is to be found in the literature regarding what factors may influence trust.

    METHODS: We assessed predictors of trust in health-care professionals and in the medical care by administering two questionnaires, one at start of chemotherapy treatment and one at the time of the third chemotherapy cycle, to 304 parents of children with newly diagnosed cancer at the Children's Cancer Hospital in Cairo, Egypt.

    RESULTS: Parents' trust in the medical care at the time of the child's third chemotherapy cycle was significantly associated with the following at the start of treatment: having received at least moderate information about the disease (relative risk (RR) 13.2; 95% CI 7.8-22.3) and the treatment (RR 17.2; 95% CI 9.5-31.4), having the opportunity to communicate with the child's physicians (RR 21.3; 95% CI 11.7-38.8), being satisfied with the physicians conversation style (RR 30.6; 95% CI 14.4-64.9), having the emotional needs met (RR 22.2; 95% CI 11.8-41.9), and being met with care by the child's physicians (RR 32.0; 95% CI 15.2-67.7). After multivariable model selection, the strongest predictor of trust at the time of the third chemotherapy cycle was to be met with care at the start of treatment.

    CONCLUSION: Parents being met with care by the child's physicians at the beginning of the child's chemotherapy treatment develop an increased trust in the medical care.

  • 35.
    El Malla, Hanan
    et al.
    Göteborgs universitet.
    Steineck, Gunnar
    Göteborgs universitet; Karolinska institutet.
    Ylitalo Helm, Nathalie
    Göteborgs universitet; Karolinska institutet.
    Wilderäng, Ulrica
    Göteborgs universitet.
    El Sayed Elborai, Yasser
    Egypt.
    Elshami, Mohammad
    Egypt.
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet; Sophiahemmet högskola.
    Cancer disclosure-account from a pediatric oncology ward in Egypt.2017In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 26, no 5, p. 679-685Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Informing the child about his/her diagnosis and treatment plan is essential; research has shown that it is related to the patient's quality of life and adherence to medication.

    METHODS: For 7 months during 2008 (February to September), 2 study-specific questionnaires were constructed and administered to 304 parents of children diagnosed with cancer at the Children's Cancer Hospital Egypt.

    RESULTS: Among the 313 eligible parents of children diagnosed with cancer, 304 (97%) answered the first questionnaire and 281 (92%) answered the second questionnaire. We found that nearly three-quarters (72%) of the parents had their child's cancer diagnosis communicated by the physician. Among the 72%, the rate of the children present with the parent or parents during the disease disclosure conversation was 39% (n = 85/219). The majority of the children were in the age group 5-18 years (55%).

    CONCLUSIONS: Our findings indicate that cancer disclosure at the Children's Cancer Hospital is to a certain degree common; yet even when disclosure does take place, it is mainly in the absence of the child. Moreover, the information provided during the conversation may not be fully comprehended by the parent or the child because of the physician's misleading use of terms when disclosing the disease. Therefore, better practice should be developed for disease disclosure, and proper communication should be established between the patients and the provider; patient autonomy should also have an influence in the clinical practice.

  • 36.
    El Malla, Hanan
    et al.
    Göteborgs universitet.
    Ylitalo Helm, Nathalie
    Göteborgs universitet, Karolinska institutet.
    Wilderäng, Ulrica
    Göteborgs universitet.
    El Sayed Elborai, Yasser
    Children’s Cancer Hospital Cairo, National Cancer Institute, Cairo, Egypt.
    Steineck, Gunnar
    Göteborgs universitet, Karolinska institutet.
    Kreicbergs, Ulrika
    Karolinska institutet, Sophiahemmet.
    Adherence to medication: A nation-wide study from the Children's Cancer Hospital, Egypt.2013In: World journal of psychiatry, ISSN 2220-3206, Vol. 3, no 2, p. 25-33Article in journal (Refereed)
    Abstract [en]

    AIM: To investigate adherence to medical regimen and predictors for non-adherence among children with cancer in Egypt.

    METHODS: We administered two study specific questionnaires to 304 parents of children diagnosed with cancer at the Children's Cancer Hospital in Cairo, Egypt, one before the first chemotherapy treatment and the other before the third. The questionnaires were translated to colloquial Egyptian Arabic, and due, to the high illiteracy level in Egypt an interviewer read the questions in Arabic to each parent and registered the answers. Both questionnaires consisted of almost 90 questions each. In addition, a Case Report Form was filled in from the child's medical journal. The study period consisted of 7 mo (February until September 2008) and we had a participation rate of 97%. Descriptive statistics are presented and Fisher's exact test was used to check for possible differences between the adherent and non-adherent groups. A P-value below 0.05 was considered significant. Software used was SAS version 9.3 for Windows (SAS Institute Inc., Cary, NC, United States).

    RESULTS: Two hundred and eighty-one (90%) parents answered the second questionnaire, regarding their child's adherence behaviour. Approximately two thirds of the children admitted to their third chemotherapy treatment had received medical recommendations upon discharge from the first or second chemotherapy treatment (181/281, 64%). Sixty-eight percent (123/181) of the parents who were given medical recommendations reported that their child did not follow the recommendations. Two main predictors were found for non-adherence: child resistance (111/123, 90%) and inadequate information (100/123, 81%). In the adherent group, 20% of the parents (n = 12/58) reported trust in their child's doctor while 14 percent 8/58 reported trust in the other health-care professionals. Corresponding numbers for the non-adherent group are 8/123 (7%) for both their child's doctor and other health-care professionals. Almost all of the parents expressed a lack of optimism towards the treatment (116/121, 96%), yet they reported an intention to continue with the treatment for two main reasons, for the sake of their child's life (70%) (P = 0.005) and worry that their child would die if they discontinued the treatment (81%) (P < 0.0001).

    CONCLUSION: Non-adherence to medical regimen is common among children diagnosed with cancer in Egypt, the main reasons being child resistance and inadequate information.

  • 37.
    Grenklo, Tove Bylund
    et al.
    Karolinska Institutet, Stockholm Sjukhem Foundation.
    Kreicbergs, Ulrika C
    Karolinska Institutet, Sophiahemmet.
    Valdimarsdóttir, Unnur A
    Karolinska Institutet, University of Iceland, Reykjavík, Iceland, Harvard School of Public Health, Boston, USA.
    Nyberg, Tommy
    Karolinska Institutet.
    Steineck, Gunnar
    Karolinska Institutet, Göteborgs universitet.
    Fürst, Carl Johan
    Karolinska Institutet, Stockholm Sjukhem Foundation, Lunds universitet.
    Communication and trust in the care provided to a dying parent: A nationwide study of cancer-bereaved youths.2013In: Journal of Clinical Oncology, ISSN 0732-183X, E-ISSN 1527-7755, Vol. 31, no 23, p. 2886-2894Article in journal (Refereed)
    Abstract [en]

    PURPOSE: To assess children's trust in the care provided to a dying parent during the final week of life in relation to end-of-life medical information about disease, treatment, and death.

    METHODS: This nationwide population-based survey included 622 (73%) of 851 youths who, 6 to 9 years earlier, at age 13 to 16 years, lost a parent to cancer. We asked about the children's reception of end-of-life professional information and trust in the care provided. We also asked about depression and several potential risk factors of distrust in the care provided.

    RESULTS: A majority (82%) reported moderate/very much trust in the care provided. Compared with children who received end-of-life medical information before their loss, the risk of distrust in the care provided was higher in those who received no information (risk ratio [RR], 2.5; 95% CI, 1.5 to 4.1), in those who only received information afterward (RR, 3.2; 95% CI, 1.7 to 5.9), and in those who did not know or remember if end-of-life medical information was provided (RR, 1.7; 95% CI, 1.1 to 2.5). Those reporting distrust in the care provided had an RR of 2.3 (95% CI, 1.5 to 3.5) for depression. Furthermore, the risk of distrust in the care provided was higher among children reporting poor efforts to cure (RR, 5.1; 95% CI, 3.6 to 7.3), and/or a poor relationship with the surviving parent (RR, 2.9; 95% CI, 2.0 to 4.1).

    CONCLUSION: Our study suggests that children's trust in the care provided to a dying parent was highest when they received end-of-life medical information before their loss.

  • 38.
    Hjorth, Elin
    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.
    Sejersen, Thomas
    Karolinska institutet.
    Jeppesen, Jørgen
    National Rehabilitation Center for Neuromuscular Diseases (RCFM), Aarhus, Denmark.
    Werlauff, Ulla
    National Rehabilitation Center for Neuromuscular Diseases (RCFM), Aarhus, Denmark.
    Rahbek, Jes
    National Rehabilitation Center for Neuromuscular Diseases (RCFM), Aarhus, Denmark.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Bereaved Parents More Satisfied With the Care Given to Their Child With Severe Spinal Muscular Atrophy Than Nonbereaved2019In: Journal of Child Neurology, ISSN 0883-0738, E-ISSN 1708-8283, Vol. 34, no 2, p. 104-112Article in journal (Refereed)
    Abstract [en]

    BACKGROUND AND AIMS:: Children with severe spinal muscular atrophy have complex care needs due to progressive muscle weakness, eventually leading to respiratory failure. To design a care system adapted to families' needs, more knowledge about parents' experience of care and its coordination between settings is required. This study explores (1) whether parents felt that health professionals took every opportunity to help the child feel as good as possible, (2) parents' satisfaction with various care settings, and (3) parents' satisfaction with coordination between settings.

    METHODS:: Data derive from nationwide Swedish and Danish surveys of bereaved and nonbereaved parents of children with severe spinal muscular atrophy born between 2000 and 2010 in Sweden and 2003 and 2013 in Denmark (N = 95, response rate = 84%). Descriptive statistics and content analysis were used.

    RESULTS:: Although most of the parents reported that care professionals had taken every opportunity to help the child feel as good as possible, one-third reported the opposite. Bereaved parents were significantly more satisfied with care than nonbereaved (81% vs 29%). The children received care at many different locations, for all of which parents rated high satisfaction. However, some were dissatisfied with care coordination, describing lack of knowledge and communication among staff, and how they as parents had to take the initiative in care management.

    CONCLUSIONS:: This study highlights the importance of improving disease-specific competence, communication and knowledge exchange among staff. For optimal care for these children and families, parents should be included in dialogues on care and staff should be more proactive and take care management initiatives.

  • 39.
    Hjorth, Elin
    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, Astrid Lindgrens barnsjukhus.
    Sejersen, Thomas
    Karolinska institutet, Astrid Lindgrens barnsjukhus.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet, Astrid Lindgrens barnsjukhus.
    Parents' advice to healthcare professionals working with children who have spinal muscular atrophy2018In: European journal of paediatric neurology, ISSN 1090-3798, E-ISSN 1532-2130, Vol. 22, no 1, p. 128-134, article id S1090-3798(17)30897-8Article in journal (Refereed)
    Abstract [en]

    AIM: To explore parents' advice to healthcare professionals working with children with spinal muscular atrophy (SMA).

    MATERIALS AND METHODS: This study derives from a Swedish nationwide survey and uses content analysis to make inferences from answers to an open-ended question concerning parent's advice to healthcare professionals. Of eligible parents who had a child born in Sweden between 2000 and 2010, diagnosed with SMA type 1 or 2, and for whom respiratory support was considered in the first year of life, 61 participated in the study (response rate: 87%). Of these, 51 parents answered the question about advice to healthcare professionals working with children with SMA.

    RESULTS: More than half of the advice from parents was related to professional-family relations. The second most frequent type of advice related to two aspects of knowledge about SMA: desire that healthcare professionals possess knowledge, and desire that they provide knowledge. The parents also had advice concerning support in daily life, both to the parents and to the affected child. Other pieces of advice were related to organization of care and the parents' desire to be involved in the child's care.

    CONCLUSIONS: Parents advised healthcare professionals to increase their disease-specific knowledge, to treat the parents as experts on their child, and to treat the family with respect, particularly in situations where the child's case is used as an opportunity to improve healthcare professionals' competence. Increased practical support in daily life and a case coordinator is also among parents' advice to healthcare professionals.

  • 40.
    Hjorth, Elin
    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.
    Sejersen, Thomas
    Karolinska institutet.
    Werlauff, Ulla
    National Rehabilitation Centre for Neuromuscular Diseases (RCFM), Aarhus, Denmark.
    Rahbek, Jes
    National Rehabilitation Centre for Neuromuscular Diseases (RCFM), Aarhus, Denmark.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Parents’ advice to other parents of children with spinal muscular atrophy: Two nationwide follow-ups2022In: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 26, no 3, p. 407-421Article in journal (Refereed)
    Abstract [en]

    Being a parent of a child with spinal muscular atrophy (SMA), a disease that causes progressive muscle weakness, involves a range of challenges. The purpose of this study was to explore what advice parents of children with severe SMA, in absence of effective therapies, would like to give to other parents. The study derives from two nationwide parental surveys in Sweden and Denmark where content analysis was used to analyse one open-ended question about parents’ advice to other parents. Of eligible parents, n=113, (parents of children diagnosed with SMA type 1 or 2, for whom respiratory support was considered during first year of life), 95 participated in the study (response-rate: 84%), and 81 gave written advice. The advice covered coping with everyday life with the ill child, involvement in care of the child, and existential issues of living with and losing a child with SMA. Parents highlighted leading normal lives insofar as possible, e.g., by trying to see the healthy aspects in the child, not only focusing on care and treatment. The advice can be related to resilience strategies for parents with a child with severe SMA which can help healthcare professionals and others to support parents in similar situations.

  • 41.
    Hjorth, Elin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Lovgren, 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.
    Sejersen, Thomas
    Karolinska institutet.
    Asaba, Eric
    Karolinska institutet; Stiftelsen Stockholms sjukhem; Lunds universitet.
    "Suddenly we have hope that there is a future": Two families’ narratives when a child with spinal muscular atrophy receives a new effective drug2021In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 16, no 1, article id 1904722Article in journal (Refereed)
    Abstract [en]

    Purpose: This study aims to explore negotiations of hope in everyday life for families where a child with spinal muscular atrophy (SMA) has received a new drug treatment.

    Methods: A narrative design was used, drawing on interviews and participant observations in two families with children with SMA, types 1–2, to situate family experiences of hope in everyday life. Narrative analysis was used on the data.

    Results: Results are presented as stories, with details about situations and contexts, to illustrate how hope was used by families to reconstruct their own family narratives.

    Conclusions: Hope was negotiated and struggled with in different ways by different family members, but contributed to each person’s own way of dealing with the disease and outlook for the future.

  • 42.
    Holm, Maja
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet högskola, Stockholm.
    Lövgren, Malin
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska universitetssjukhuset.
    Alvariza, Anette
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Stockholms sjukhem.
    Eklund, Rakel
    Uppsala universitet.
    Kreicbergs, Ulrika
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Experiences of being a severely ill parent of dependent children receiving care at home: Hopes and challenges2024In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 22, no 1, p. 169-173Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: Multiple studies have focused on severely ill patients in the role as parents of dependent children, yet few have explored the thoughts and feelings within this group during palliative home care.

    METHODS: This qualitative study derives from a pilot intervention study, the Family Talk Intervention (FTI), in specialized palliative home care. The FTI is a support program with the main goal to increase family communication about illness-related topics. The study is based on field notes from 104 sessions with 20 parents taken by an interventionist during intervention delivery. The field notes were analyzed using the principles of qualitative content analysis.

    RESULTS: The field notes revealed several challenging situations for parents with severe illness. A major issue was how to find ways to talk to their children about their illness and prognosis. The parents expressed guilt for being unable to fulfill their roles as parents and partners. Existing family conflicts had escalated with the illness, according to some parents. Despite being affected by illness, parents tried to have hope, if only for small things - such as a period of ordinary family life.

    SIGNIFICANCE OF RESULTS: Severely ill parents in specialized palliative home care seek support regarding how to communicate and stay connected to their roles in the family, which is a struggle when a parent is cared for at home, while it in contrast may promote normality and hope. Communication with children is vital and needs to be brought to the attention of health-care professionals. A family-centered focus, involving both parents and children, should be embraced.

  • 43.
    Holm, Maja
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet högskola.
    Weber Falk, Megan
    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 Dalen.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    How parents of dependent children reason about their partner's impending death due to cancer2023In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 47, no 1, p. 105-110Article in journal (Refereed)
    Abstract [en]

    This paper explores how bereaved parents with dependent children reasoned about their partner's impending death due to cancer. Questionnaires were used to collect data from 42 cancer-bereaved parents of dependent children in Sweden. The results showed that most of the parents had thought, at least once, that death would be best for their partner's own sake. A few parents had also thought that it would be best for everyone if their partner died. Many parents had a wish to keep up hope, no matter what. However, living with a partner with advanced illness and dependent children was described as extremely stressful.

  • 44.
    Holm, Maja
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet högskola.
    Weber Falk, Megan
    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.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Sources of social support and its importance for cancer-bereaved spouses and their minor children: A cross-sectional study2022In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 46, no 4, p. 996-1002Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to evaluate the sources from which bereaved families with minor children reported receiving social support after the death of a parent/partner and which sources they perceived as important. Using an online platform, 23 adolescents, 42 parents, and 27 parent proxies for children aged 4-11 years, completed questionnaires. Family and friends were valued as the most important sources of social support, while social support from societal institutions, such as health care and school, was considered less important, and insufficient.

  • 45.
    Hunt, Hayley
    et al.
    Karolinska institutet.
    Valdimarsdottir, Unnur
    Karolinska institutet.
    Mucci, Lorelei
    Karolinska institutet.
    Kreicbergs, Ulrika
    Dana Farber Cancer Institute, USA. Karolinska institutet.
    Steineck, Gunnar
    Karolinska institutet.
    When death appears best for the child with severe malignancy: a nationwide parental follow-up.2006In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 20, no 6, p. 567-577Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Loss of a child to malignancy is associated with long-term morbidity among surviving parents. This study aims to identify particular sources of stress among parents of children with severe malignancy.

    METHODS: We attempted to contact all parents in Sweden who lost a child to cancer between 1992 and 1997. Some 449 parents answered an anonymous questionnaire, including a question regarding whether they ever thought that death would be best for the child with severe malignancy.

    RESULTS: Mothers whose children were unable to communicate during their last week of life were more likely to think that death would be best for the child (relative risk (RR): 1.6; 95% confidence interval (CI): 1.2-2.1). Fathers whose children faced six years or more with malignancy were more likely to think that death would be best for their child (RR: 2.1; 95% CI: 1.3-3.5).

    CONCLUSIONS: The inability of the child with severe malignancy to communicate increases the likelihood of mothers thinking that death would be best for the child, while longer duration of the child's illness increases the occurrence of this thought among fathers.

  • 46.
    Häger Tibell, Louise
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Alvariza, Anette
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Kreicbergs, Ulrika
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Holm, Maja
    Webbaserat stöd för närstående inom specialiserad palliativ hemsjukvård: narstaende.se2022Conference paper (Refereed)
    Abstract [sv]

    Bakgrund: Det är vanligt att närstående tar stort ansvar för vård i hemmet men också att de känner sig oförberedda inför livet med en svårt sjuk partner. Många upplever en psykiskt och social påfrestning, nedsatt hälsa och bristande insikt om framtiden. Högre grad av förberedelse kan bidra till mindre oro, ångest, nedstämdhet och bättre välbefinnande. Med syfte att erbjuda stöd har en webbplats, narstaende.se, innehållande filmer där sjukvårdspersonal (autentiska) möter närstående (skådespelare) i en situation likt den de närstående befinner sig i utvecklats. Det finns även informativa texter samt länkar till vidare information och ett chattforum.

    Syfte: Att utvärdera användbarhet, innehåll och de närståendes upplevelse av narstaende.se.

    Metod: Närstående vid ASIH enheter i Stockholm inkluderas och de besvarar en enkät innan tillgång tillwebbplatsen samt efter 4 veckor. I enkät två ingår frågor om användande av webbplatsen, hur de uppfattat filmer, texter, länkar samt chatt, inverkan på förberedelse att vårda. De närstående som samtycker intervjuas för att få djupare förståelse.

    Resultat: Data från enkäter visar att flertalet anser att tillgången till narstaende.se kom vid lämplig tidpunkt och att de skulle rekommendera den till andra i liknande situation. I intervjuer har närstående uttryckt att de tagit vara på dagarna på ett annat sätt, känt stöd i att arbeta eller vara hemma mer, göra aktiviteter på egen hand, förberett praktiska frågor samt fått bekräftelse i att ”det här är vanligt eller naturligt att känna”. Några uttrycker att delar av informationen samt enkäterna varit till särskild hjälp, tankar och känslor har väckts som kan vara svåra men som samtidigt beskrivs viktiga i bearbetning av situationen.

    Betydelse: Projektet kan ge kunskap om hur stöd i webbaserad form tas emot, om och hur det används och om intervention kan bidra till ökad förberedelse.

  • 47.
    Häger Tibell, Louise
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Universitetssjukhuset.
    Alvariza, Anette
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Stockholms Sjukhem.
    Kreicbergs, Ulrika
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Institutet.
    Wallin, Viktoria
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Steineck, Gunnar
    Karolinska Institutet; Sahlgrenska Universitetssjukhuset.
    Holm, Maja
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet Högskola.
    Web-based support for spouses of patients with life-threatening illness cared for in specialized home care: A feasibility study2022In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, p. 1-9Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: Psychoeducational interventions for family caregivers have shown to be effective but not possible for all caregivers to attend; thus, web-based interventions may be a complement. This study aimed to evaluate feasibility of a web-based intervention, "narstaende.se," from the perspective of spouses of patients receiving specialized home care.

    METHODS: A website was developed, containing videos with conversations between health-care professionals and family caregivers (actors), informative texts, links to further information, and a chat forum. The aim of the website is to provide support and promote preparedness for caregiving and death, and the content is theoretically and empirically grounded. The study had a descriptive cross-sectional design. Altogether, 26 spouses answered a questionnaire, before accessing the website, and 4 weeks after this, 12 spouses were interviewed. Descriptive statistics and qualitative content analysis were used.

    RESULTS: Spouses experienced the website as being easy to use, welcoming, and with relevant content. Participating spouses would recommend "narstaende.se" to others in similar situations, and the majority found the website introduced timely. Videos seemed easily accessible and were most used, contributing to a feeling of recognition and sharing the situation. The online format was perceived as flexible, but still not all spouses visited the website, stating the desire for support in real life.

    SIGNIFICANCE OF RESULTS: A web-based intervention can be feasible for spouses in specialized home care; however, the digital format is not suitable for everyone. Further research is needed to determine the website's potential to provide support and increase preparedness for family caregivers in general.

  • 48.
    Häger Tibell, Louise
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Tema Cancer, BES: Breast-Endocrine Tumours and Sarcoma, Karolinska University Hospital, Stockholm, Sweden.
    Årestedt, Kristofer
    Faculty of Health and Life Sciences, Linnaeus University, Kalmar, Sweden; Department of Research, Region Kalmar County, Kalmar, Sweden.
    Holm, Maja
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Department of Nursing Science, Sophiahemmet University, Stockholm, Sweden.
    Wallin, Viktoria
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Steineck, Gunnar
    Department of Clinical Cancer Epidemiology, Karolinska Institutet, Stockholm, Sweden; Division of Clinical Cancer Epidemiology, Sahlgrenska University Hospital, Gothenburg, Sweden.
    Hudson, Peter
    Centre for Palliative Care, St Vincent´s Hospital and The University of Melbourne, Melbourne, Australia; Vrije University Brussels, Brussels, Belgium.
    Kreicbergs, Ulrika
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
    Alvariza, Anette
    Research and Development-Unit/Palliative Care, Stockholms Sjukhem, Stockholm, Sweden.
    Preparedness for caregiving and preparedness for death: Associations and modifiable thereafter factors among family caregivers of patients with advanced cancer in specialized home care2024In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 48, no 4, p. 407-416Article in journal (Refereed)
    Abstract [en]

    The purpose of this study was to (1) explore associations between preparedness for caregiving and preparedness for death among family caregivers of patients with advanced cancer and (2) explore modifiable preparedness factors, such as communication and support. Data was derived from a baseline questionnaire collected in specialized home care. The questionnaire included socio-demographics, the Preparedness for Caregiving Scale, and single items addressing preparedness for death, received support and communication about incurable illness. Data was analyzed using descriptive statistics and Spearman correlations. Altogether 39 family caregivers participated. A significant association was found between preparedness for caregiving and preparedness for death. Received support and communication about the illness was associated with higher levels of preparedness for caregiving and death. This study contributes to evidence on the association between preparedness for caregiving and death, but also that communication and support employed by healthcare professionals could improve family caregiver preparedness and wellbeing. 

  • 49.
    Håkanson, Cecilia
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Öhlén, Joakim
    Göteborgs universitet.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Cardenas-Turanzas, Marylou
    USA.
    Wilson, Donna M
    Canada.
    Loucka, Martin
    The Czech Republic.
    Frache, Sandra
    France.
    Giovannetti, Lucia
    Italy.
    Naylor, Wayne
    New Zeeland.
    Rhee, YongJoo
    South Korea.
    Ramos, Miguel Ruiz
    Spain.
    Teno, Joan
    Belgium.
    Beernaert, Kim
    Belgium.
    Deliens, Luc
    Belgium.
    Houttekier, Dirk
    Belgium.
    Cohen, Joachim
    Belgium.
    Place of death of children with complex chronic conditions: cross-national study of 11 countries.2017In: European Journal of Pediatrics, ISSN 0340-6199, E-ISSN 1432-1076, Vol. 176, no 3, p. 327-335Article in journal (Refereed)
    Abstract [en]

    Cross-national understanding of place of death is crucial for health service systems for their provision of efficient and equal access to paediatric palliative care. The objectives of this population-level study were to examine where children with complex chronic conditions (CCC) die and to investigate associations between places of death and sex, cause of death and country. The study used death certificate data of all deceased 1- to 17-year-old children (n = 40,624) who died in 2008, in 11 European and non-European countries. Multivariable logistic regression was performed to determine associations between place of death and other factors. Between 24.4 and 75.3% of all children 1-17 years in the countries died of CCC. Of these, between 6.7 and 42.4% died at home. In Belgium and the USA, all deaths caused by CCC other than malignancies were less likely to occur at home, whereas in Mexico and South Korea, deaths caused by neuromuscular diseases were more likely to occur at home than malignancies. In Mexico (OR = 0.91, 95% CI: 0.83-1.00) and Sweden (OR = 0.35, 95% CI: 0.15-0.83), girls had a significantly lower chance of dying at home than boys.

    CONCLUSION: This study shows large cross-national variations in place of death. These variations may relate to health system-related infrastructures and policies, and differences in cultural values related to place of death, although this needs further investigation. The patterns found in this study can inform the development of paediatric palliative care programs internationally. What is known: • There is a scarcity of population-level studies investigating where children with CCC die in different countries. • Cross-national understanding of place of death provides information to health care systems for providing efficient and equal access to paediatric palliative care. What is new : • There are large cross-national variations in the place of death of children with CCC, with few deathsoccuring at home in some countries whereas hospital deaths are generally most common. • In general, deaths caused by neuromuscular diseases and malignancies occur at home more often thanother CCC.

  • 50.
    Högberg, Cecilia
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Wallin, Viktoria
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Kreicbergs, Ulrika
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Great Ormond Street Institute of Child health, University College London, United Kingdom.
    Alvariza, Anette
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Stockholms sjukhem; Palliativt kunskapscentrum.
    Närståendes erfarenheter av webbaserat stöd under pågående specialiserad hemsjukvård: ’Närstående.se’2023Conference paper (Refereed)
    Abstract [sv]

    Bakgrund Stöd till närstående är en grundläggande del av palliativ vård. Stödinterventioner som erbjudits i grupp in-real-life har utvärderats med positiva effekter. Det kan dock vara svårt för närstående att delta på grund av svårigheter att lämna den sjuke och formatet passar heller inte alla. Webbaserade lösningar kan möjliggöra för fler att ta del av stöd utifrån egna förutsättningar och behov. Olika alternativ finns men mer kunskap om webbaserat stöd behövs.

    Syfte Att undersöka närståendes erfarenheter av stöd i samband med deltagande i en webbaserad intervention ’Närstående.se’ under pågående specialiserad hemsjukvård.

    Metod Webbsidan ’Närstående.se’ är baserad på tidigare forskning och innehåller kortare filmer där vårdpersonal (autentisk) samtalar med närstående (skådespelare) om ämnen som ofta är angelägna för närstående. Filmerna kompletteras med fördjupande texter och på webbsidan finns ett modererat chattforum. Studien ingår i ett projekt med randomiserad kontrollerad design. Kvalitativa intervjuer genomfördes med 7 närstående varav 5 partners, 1 syskon och 1 dotter, mellan 46–80 år. Data analyserades med kvalitativ innehållsanalys.

    Resultat Möjligheten att vid behov och i lugn och ro ta del av stöd hemifrån uppskattades. Närstående uttryckte att det genom ’Närstående.se’ kunde vara lättare att närma sig frågor om svår sjukdom och död. Användning av webbsidan gav närstående igenkänning, bekräftelse och normaliserande av svåra känslor. Att ta del av webbsidan bidrog till att svåra ämnen hamnade i fokus vilket kunde underlätta samtal inom familjen. Webbsidan hade använts i olika omfattning men vetskapen om att ha tillgång till den upplevdes som en trygghet.

    Konklusion Närstående upplever att webbaserat stöd finns när de behöver det. Att närstående kan välja att ta del av specifikt stöd vid behov innebär att stödet blir personcentrerat och anpassat för deras behov.

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