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  • 1. Alvariza, Anette
    et al.
    Holm, Maja
    Bylund-Grenklo, Tove
    Karolinska institutet; Linnéunversitetet.
    Goliath, Ida
    Kreicbergs, Ulrika
    Viktigt att stärka närståendes möjligheter att förbereda sig2016In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 113, no 47, p. 1-3Article in journal (Other academic)
    Abstract [en]

    När svårt sjuka patienter vårdas i det egna hemmet har närstående ofta en avgörande roll. De närstående har också, utöver vårdsituationen, att hantera sina egna känslor kring förlust, sorg och död. Närstående är ofta otillräckligt förberedda för sin vårdarroll och har behov av information och stöd. Att vara förberedd har lyfts fram som ett viktigt fenomen för närstående. Det har visat sig relatera till flera positiva faktorer och anses ha en skyddande effekt mot negativa konsekvenser. Med en öppen, ärlig kommunikation och ett riktat stöd ökar närståendes möjligheter att förbereda sig för en vårdande roll samt det faktum att sjukdomen är obotlig och leder till döden.

  • 2. Alvariza, Anette
    et al.
    Lovgren, Malin
    Bylund-Grenklo, Tove
    Karolinska institutet; Linnéuniversitetet.
    Hakola, Pia
    Furst, Carl Johan
    Kreicbergs, Ulrika
    How to support teenagers who are losing a parent to cancer: Bereaved young adults' advice to healthcare professionals-A nationwide survey2017In: 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.

  • 3. Beernaert, Kim
    et al.
    Kreicbergs, Ulrika
    Furst, Carl Johan
    Nyberg, Tommy
    Steineck, Gunnar
    Bylund-Grenklo, Tove
    Karolinska institutet.
    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. 3136-3142Article 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.

  • 4.
    Birgisdóttir, Dröfn
    et al.
    Lunds universitet.
    Bylund-Grenklo, Tove
    University of Gävle, Faculty of Health and Occupational Studies, Department of Caring Science, Caring Science.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Stockholm; Karolinska institutet.
    Steineck, Gunnar
    Karolinska institutet; Lunds universitet.
    Fürst, Carl Johan
    Lunds universitet.
    Kristensson, Jimmie
    Lunds universitet.
    Family cohesion predicts long-term health and well-being after losing a parent to cancer as a teenager: A nationwide population-based study2023In: PLOS ONE, E-ISSN 1932-6203, Vol. 18, no 4, article id e0283327Article in journal (Refereed)
    Abstract [en]

    Background

    Parentally bereaved children are at increased risk of negative consequences, and the mediating factors most consistently identified are found to be related to family function after the loss, including cohesion. However, existing evidence is limited, especially with respect to children and youths’ own perception of family cohesion and its long-term effects on health and well-being. Therefore, the aim of this study was to investigate self-reported family cohesion the first year after the loss of a parent to cancer and its association to long-term psychological health and well-being among young adults that were bereaved during their teenage years.

    Method and participants

    In this nationwide population-based study, 622 of 851 (73%) young adults (aged 18–26) responded to a study-specific questionnaire six to nine years after losing a parent to cancer at the age of 13 to 16. Associations were assessed with modified Poisson regression.

    Results

    Bereaved youth that reported poor family cohesion the first year after losing a parent to cancer had a higher risk of reporting symptoms of moderate to severe depression six to nine years after the loss compared to those reporting good family cohesion. They also had a higher risk of reporting low levels of well-being, symptoms of anxiety, problematic sleeping and emotional numbness once a week or more at the time of the survey. These results remained statistically significant after adjusting for a variety of possible confounding factors.

    Conclusion

    Self-reported poor family cohesion the first year after the loss of a parent to cancer was strongly associated with long-term negative psychological health-related outcomes among bereaved youth. To pay attention to family cohesion and, if needed, to provide support to strengthen family cohesion in families facing bereavement might prevent long-term suffering for their teenage children.

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  • 5.
    Birgisdóttir, Dröfn
    et al.
    Faculty of Medicine, Department of Clinical Sciences Lund, Oncology and Pathology, Institute for Palliative Care, Lunds University, Lund, Sweden.
    Bylund-Grenklo, Tove
    University of Gävle, Faculty of Health and Occupational Studies, Department of Caring Science, Caring Science. Clinical Cancer Epidemiology, Department of Oncology-Pathology, Karolinska Institute, Stockholm, Sweden.
    Nyberg, Tommy
    Clinical Cancer Epidemiology, Department of Oncology-Pathology, Karolinska Institute, Stockholm, Sweden; Centre for Cancer Genetic Epidemiology, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK; Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
    Kreicbergs, Ulrika
    Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden; Department of Caring Sciences, Palliative Research Center, Ersta Sköndal Bräcke University College, Stockholm, Sweden.
    Steineck, Gunnar
    The Sahlgrenska Academy, Department of Oncology, Division of Clinical Cancer Epidemiology, University of Gothenburg Institute of Clinical Sciences, Gothenburg, Sweden.
    Fürst, Carl J.
    Faculty of Medicine, Department of Clinical Sciences Lund, Oncology and Pathology, Institute for Palliative Care, Lunds University, Lund, Sweden.
    Losing a parent to cancer as a teenager: Family cohesion in childhood, teenage, and young adulthood as perceived by bereaved and non-bereaved youths2019In: 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.

  • 6.
    Bylund-Grenklo, Tove
    Karolinska institutet.
    Barn som anhöriga när föräldrar är allvarligt sjuka och dör: En kartläggning med fokus på Kronobergs län2016Report (Other academic)
  • 7.
    Bylund-Grenklo, Tove
    Karolinska institutet.
    Barn som närstående2012In: Nationellt vårdprogram för palliativ vård 2012–2014, Regionala cancercentrum i samverkan , 2012, p. 32-35Chapter in book (Refereed)
  • 8.
    Bylund-Grenklo, Tove
    Karolinska institutet; Linnéuniversitetet.
    Obearbetad sorg, depression och sömnproblem 6-9 år efter tonårsförlust av en förälder i cancer2016In: BestPractice Nordic, Vol. 7, no 28, p. 28-32Article in journal (Other academic)
  • 9.
    Bylund-Grenklo, Tove
    Karolinska institutet.
    Utvärdering av webbplatsen ”Samlat stöd för patientsäkerhet”2019Report (Other academic)
  • 10.
    Bylund-Grenklo, Tove
    Karolinska institutet.
    Var ärliga och berätta sanningen för oss – föräldrarna orkar inte2014In: Palliativ vård, ISSN 2001-841X, no 2, p. 12-13Article in journal (Other academic)
  • 11.
    Bylund-Grenklo, Tove
    et al.
    Karolinska institutet.
    Axelsson, Susanna
    Tandläkarmetoder i behov av utvärdering – resultat från en enkätundersökning2000In: Behov av utvärdering i tandvården, SBU , 2000, p. 39-54Chapter in book (Refereed)
  • 12.
    Bylund-Grenklo, Tove
    et al.
    University of Gävle, Faculty of Health and Occupational Studies, Department of Caring Science, Caring Science.
    Birgisdóttir, Dröfn
    Lund University.
    Beenaert, Kim
    Ghent University, Netherlands.
    Nyberg, Tommy
    University of Cambridge, UK; Karolinska Institute.
    Skokic, Viktor
    Karolinska Institute.
    Kristensson, Jimmie
    Lund University.
    Steineck, Gunnar
    Karolinska Institute; University of Gothenburg.
    Fürst, Carl Johan
    Lund University.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College; Karolinska Institute.
    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.

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  • 13.
    Bylund-Grenklo, Tove
    et al.
    Karolinska institutet; Linnéuniversitetet.
    Furst, C. J.
    Nyberg, T.
    Steineck, G.
    Kreicbergs, U.
    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. MethodsIn 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.

  • 14.
    Bylund-Grenklo, Tove
    et al.
    Karolinska institutet.
    Kreicbergs, Ulrika C.
    Valdimarsdóttir, Unnur A.
    Nyberg, Tommy
    Steineck, Gunnar
    Fürst, Carl Johan
    Communication and Trust in the Care Provided to a Dying Parent: A Nationwide Study of Cancer-Bereaved Youths2013In: 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.

  • 15.
    Bylund-Grenklo, Tove
    et al.
    Karolinska institutet.
    Kreicbergs, Ulrika
    Hauksdóttir, Arna
    Valdimarsdóttir, Unnur A
    Nyberg, Tommy
    Steineck, Gunnar
    Fürst, Carl Johan
    Self-injury in teenagers who lost a parent to cancer: a nationwide, population-based, long-term follow-up2013In: JAMA pediatrics, ISSN 2168-6203, E-ISSN 2168-6211, Vol. 167, no 2, p. 133-40Article 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.

  • 16.
    Bylund-Grenklo, Tove
    et al.
    Karolinska institutet.
    Kreicbergs, Ulrika
    Uggla, Charlotta
    Valdimarsdóttir, Unnur A
    Nyberg, Tommy
    Steineck, Gunnar
    Fürst, Carl Johan
    Teenagers want to be told when a parent's death is near: A nationwide study of cancer-bereaved youths' opinions and experiences.2015In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 54, no 6, p. 944-50Article 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.

  • 17.
    Bylund-Grenklo, Tove
    et al.
    Karolinska institutet.
    Kreicbergs, Ulrika
    Valdimarsdóttir, Unnur A
    Nyberg, Tommy
    Steineck, Gunnar
    Fürst, Carl Johan
    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. 989-97Article 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.

  • 18.
    Bylund-Grenklo, Tove
    et al.
    University of Gävle, Faculty of Health and Occupational Studies, Department of Caring Science, Caring Science. Department of Oncology Pathology, Karolinska Institutet, Stockholm, Sweden.
    Werkander-Harstäde, Carina
    Department of Health and Caring Sciences, Linnaeus University, Växjö; Center for Collaborative Palliative Care, Växjö, Sweden; Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Sandgren, Anna
    Department of Health and Caring Sciences, Linnaeus University, Växjö; Center for Collaborative Palliative Care, Växjö, Sweden; Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Benzein, Eva
    Department of Health and Caring Sciences, Linnaeus University, Kalmar; Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden .
    Östlund, Ulrika
    Centre for Research and Development, Uppsala University/Region Gävleborg, Gävle; Faculty of Medicine and Health, School of Health Sciences, Örebro University; Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden .
    Dignity in life and care: The perspectives of Swedish patients in a palliative care context2019In: International Journal of Palliative Nursing, ISSN 1357-6321, E-ISSN 2052-286X, Vol. 25, no 4, p. 193-201Article in journal (Refereed)
    Abstract [en]

    Background: How patients preserve their sense of dignity in life is an important area of palliative care that remains to be explored. Aims: To describe patients' perspectives of what constitutes a dignified life within a palliative care context. Methods: Twelve palliative care patients were interviewed about their views on living with dignity. Data were analysed using qualitative content analysis. Results: What constitutes a dignified life during end-of-life care was captured by the theme 'I may be ill but I am still a human being' and presented under the categories 'preserving my everyday life and personhood', 'having my human value maintained by others through 'coherence' and 'being supported by society at large'. Conclusion: Patients' sense of dignity can be preserved by their own attitudes and behaviours, by others and through public support. Health professionals need to adopt a dignity-conserving approach, for which awareness of their own attitudes and behaviours is crucial. 

  • 19. Fürst, Carl Johan
    et al.
    Bylund-Grenklo, Tove
    Karolinska institutet.
    Valdimarsdóttir, Linnur A
    Slutrapport. Identifikation och insatser för närstående med särskilda behov inom den palliativa vården: Systematisk prevention av långvarig psykisk sjuklighet: "Närståendeprojektet". Ett vårdutvecklingsprojekt hos Cancerfonden 2005-20072009Report (Other academic)
  • 20. Grimheden, Sofia
    et al.
    Lindqvist, Gunilla
    Bylund-Grenklo, Tove
    Karolinska institutet; Linnéuniversitetet.
    Sandgren, Anna
    An obligation to care for seriously ill children in their homes: a qualitative study of community nurses' perceptions2017In: Nordic journal of nursing research, ISSN 2057-1585, E-ISSN 2057-1593, Vol. 37, no 4, p. 201-208Article in journal (Refereed)
    Abstract [en]

    When children are seriously ill, being able to be cared for at home with the family is valuable, but community nurses are often not trained to care for children. The aim of this study was therefore to describe community nurses´perceptions of caring for serioulsy ill children at home. A content analysis was conducted of 11 semi-structed interviews with nurses. One theme, obligation to care, was found, followed by three categories: making an impact, feeling confident, and emotional processing. In conclusion, we found collaboration with paediatric staff in the hospital is important for community nurses in order to gain confidence, which would optimise care at home for seriously ill children and their families.

  • 21. Lovgren, Malin
    et al.
    Bylund-Grenklo, Tove
    Karolinska institutet; Linnéuniversitetet.
    Jalmsell, Li
    Eilegård Wallin, Alexandra
    Kreicbergs, Ulrika
    Bereaved Siblings' Advice to Health Care Professionals Working With Children With Cancer and Their Families2016In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 33, no 4, p. 297-305Article in journal (Refereed)
    Abstract [en]

    Introduction: Siblings of children with cancer experience psychosocial distress during the illness and after bereavement, but often stand outside the spotlight of attention and care. This study explored bereaved siblings' advice to health care professionals (HCPs) working with children with cancer and their families. Materials and Methods: In a nationwide Swedish survey of bereaved siblings, 174/240 (73%) participated. Of these, 108 answered an open-ended question about what advice they would give to HCPs working with children with cancer and their families. In this study, responses to this single question were analyzed using content analysis. Results: The most common advice, suggested by 56% of siblings, related to their own support. One third suggested giving better medical information to siblings. Some siblings wanted to be more practically involved in their brother's/sister's care and suggested that HCPs should give parents guidance on how to involve siblings. Other common advice related to psychosocial aspects, such as the siblings' wish for HCPs to mediate hope, yet also realism, and the importance of asking the ill child about what care they wanted. Conclusion: Information, communication, and involvement should be emphasized by HCPs to support siblings' psychosocial needs in both the health care setting and within the family.

  • 22.
    Sandgren, Anna
    et al.
    Linnaeus University.
    Axelsson, Lena
    Linnaeus University; Sophiahemmet University.
    Bylund-Grenklo, Tove
    University of Gävle, Faculty of Health and Occupational Studies, Department of Caring Science, Caring Science. Linnaeus University.
    Benzein, Eva
    Linnaeus University.
    Family members’ expressions of dignity in palliative care: a qualitative study2021In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 35, no 3, p. 937-944Article in journal (Refereed)
    Abstract [en]

    Living and dying with dignity are fundamental values in palliative care, not only for the patient but also for family members. Although dignity has been studied from the different perspectives of patients in need of palliative care and their family members, family members? thoughts and feelings of dignity have not been given sufficient attention. Therefore, the aim was to describe family members? expressions of dignity in palliative care. The study had a qualitative design; semi-structured individual interviews were conducted with 15 family members of patients in palliative care in a county with a specialist palliative advisory team. Data were analysed using inductive content analysis. The results showed that family members? expressions of dignity are multifaceted and complex. For family members in palliative care, dignity means living as a respected human being in relation to oneself and others. Dignity also includes being able to maintain one?s identity, feeling connected to significant others, and being comfortable with the new situation. Two contextual aspects affect family members? dignity: the two-headed paradox and reciprocal impact. The two-headed paradox means that family members want to stay close to and care for the ill person, at the same time want to escape the situation, but when they escape, they want to be close again. Reciprocal impact means that family members? feelings and experiences of the situation are closely intertwined with those of the ill person. These results may increase healthcare professionals? understanding and be used in dignified care practices that do not threaten, but instead aim to preserve family members? sense of dignity.

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  • 23. Udo, Camilla
    et al.
    Lövgren, Malin
    Sveen, Josefin
    Bylund-Grenklo, Tove
    Karolinska institutet.
    Alvariza, Anette
    Kreicbergs, Ulrika
    A Nationwide Study of Young Adults' Perspectives on Participation in Bereavement Research.2019In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 22, no 10, p. 1271-1273Article in journal (Refereed)
    Abstract [en]

    Background: Young adults represent a minority in research; they are often considered too young or too old for participation. There is sparse information, especially in bereavement research, regarding how this age group perceives research participation and what they consider beneficial or harmful. Aim: To explore how parentally bereaved and nonbereaved young adults perceive research participation. Design: Qualitative analysis of free-text comments collected in a Swedish nation-wide survey. Setting/Participants: Parentally cancer-bereaved and nonbereaved young adults between 18 and 25 years old living in Sweden. Results: Five categories were identified from the free-text comments, three among the cancer-bereaved: (1) therapeutic to remember the deceased, (2) valuable to help others and improve care, and (3) short-term distressful-long-term beneficial, and two among the nonbereaved: (1) increased reflection and awareness about life, and (2) an opportunity to help others. Conclusions: It is important to invite young adults to participate in bereavement research. The results suggest that potential harm is minimal and that participating in bereavement research can have a beneficial effect on young adults.

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