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  • 1.
    Alvariza, Anette
    et al.
    Ersta Sköndal Bräcke University College, Sweden;Dalens Hospital, Sweden.
    Holm, Maja
    Linnéuniversitetet, Fakulteten för Hälso- och livsvetenskap (FHL), Institutionen för hälso- och vårdvetenskap (HV). Mälardalen University, Sweden.
    Bylund Grenklo, Tove
    Linnéuniversitetet, Fakulteten för Hälso- och livsvetenskap (FHL), Institutionen för hälso- och vårdvetenskap (HV). Karolinska Institutet, Sweden.
    Goliath, Ida
    Karolinska Institutet, Sweden;Ersta Hospital, Sweden.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Sweden;Karolinska Institutet, Sweden.
    Viktigt att stärka närståendes möjligheter att förbereda sig2016Ingår i: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 113, nr 47, s. 1-3Artikel i tidskrift (Övrigt vetenskapligt)
    Abstract [sv]

    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.
    Ersta Sköndal Univ Coll ; Dalen Hosp, Stockholm ; Karolinska Institutet.
    Lovgren, Malin
    Ersta Sköndal Univ Coll ; Karolinska Institutet.
    Bylund Grenklo, Tove
    Linnéuniversitetet, Fakulteten för Hälso- och livsvetenskap (FHL), Institutionen för hälso- och vårdvetenskap (HV). Karolinska Institutet.
    Hakola, Pia
    Stockholms Sjukhem Fdn.
    Furst, Carl Johan
    Lund University ; Region Skåne.
    Kreicbergs, Ulrika
    Ersta Sköndal Univ Coll ; Karolinska Institutet.
    How to support teenagers who are losing a parent to cancer: Bereaved young adults' advice to healthcare professionals-A nationwide survey2017Ingår i: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 15, nr 3, s. 313-319Artikel i tidskrift (Refereegranskat)
    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.
    Vrije Univ Brussel, Belgium ; Univ Ghent, Belgium.
    Kreicbergs, Ulrika
    Ersta Sköndal Bracke University College ; Karolinska Institutet.
    Furst, Carl Johan
    Lund University.
    Nyberg, Tommy
    Karolinska Institutet ; Univ Cambridge, UK.
    Steineck, Gunnar
    Karolinska Institutet ; Sahlgrens Academy.
    Bylund Grenklo, Tove
    Linnéuniversitetet, Fakulteten för Hälso- och livsvetenskap (FHL), Institutionen för hälso- och vårdvetenskap (HV). 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 Study2017Ingår i: Journal of Clinical Oncology, ISSN 0732-183X, E-ISSN 1527-7755, Vol. 35, nr 27, s. 3136-+Artikel i tidskrift (Refereegranskat)
    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.
    Bylund Grenklo, Tove
    et al.
    Linnéuniversitetet, Fakulteten för Hälso- och livsvetenskap (FHL), Institutionen för hälso- och vårdvetenskap (HV). Karolinska Institutet.
    Furst, C. J.
    Lund University.
    Nyberg, T.
    Karolinska Institutet.
    Steineck, G.
    Karolinska Institutet ; The Sahlgrens Academy.
    Kreicbergs, U.
    Ersta Sköndal Univeristy College ; Karolinska Institutet.
    Unresolved grief and its consequences: A nationwide follow-up of teenage loss of a parent to cancer 6-9 years earlier2016Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 24, nr 7, s. 3095-3103Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PurposeThe 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.

  • 5.
    Grimheden, Sofia
    et al.
    Region Kronoberg.
    Lindqvist, Gunilla
    Linnéuniversitetet, Fakulteten för Hälso- och livsvetenskap (FHL), Institutionen för hälso- och vårdvetenskap (HV).
    Bylund Grenklo, Tove
    Linnéuniversitetet, Fakulteten för Hälso- och livsvetenskap (FHL), Institutionen för hälso- och vårdvetenskap (HV). Karolinska Institutet.
    Sandgren, Anna
    Linnéuniversitetet, Fakulteten för Hälso- och livsvetenskap (FHL), Institutionen för hälso- och vårdvetenskap (HV).
    An obligation to care for seriously ill children in their homes: a qualitative study of community nurses' perceptions2017Ingår i: Nordic journal of nursing research, ISSN 2057-1585, E-ISSN 2057-1593, Vol. 37, nr 4, s. 201-208Artikel i tidskrift (Refereegranskat)
    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.

  • 6.
    Lovgren, M.
    et al.
    Karolinska Inst ; Dalarna Univ.
    Bylund Grenklo, Tove
    Linnéuniversitetet, Fakulteten för Hälso- och livsvetenskap (FHL), Institutionen för hälso- och vårdvetenskap (HV). Karolinska Inst.
    Jalmsell, L.
    Uppsala Univ.
    Wallin, A. Eilegard
    Dalarna Univ.
    Kreicbergs, U.
    Karolinska Inst ; Ersta Sköndal Univ Coll.
    Bereaved siblings' advice to health care professionals working with children with cancer and their families2015Ingår i: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 62, s. S349-S349Artikel i tidskrift (Övrigt vetenskapligt)
  • 7.
    Lovgren, Malin
    et al.
    Karolinska Institutet, Sweden.
    Bylund Grenklo, Tove
    Linnéuniversitetet, Fakulteten för Hälso- och livsvetenskap (FHL), Institutionen för hälso- och vårdvetenskap (HV). Karolinska Institutet, Sweden.
    Jalmsell, Li
    Visby Lasarett, Sweden;Uppsala University, Sweden.
    Wallin, Alexandra Eilegard
    Dalarna University, Sweden.
    Kreicbergs, Ulrika
    Karolinska Institutet, Sweden;Ersta Sköndal Bräcke University College, Sweden.
    Bereaved Siblings' Advice to Health Care Professionals Working With Children With Cancer and Their Families2016Ingår i: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 33, nr 4, s. 297-305Artikel i tidskrift (Refereegranskat)
    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.

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