Teenagers losing a parent to cancer : experiences, modifiable risk-factors and long-term outcome

Background: We investigated the experiences of cancer-bereaved teenagers. The goal was to identify potentially modifiable risk-factors for long-term psychological consequences and thus be able to guide health-care providers in ways to support bereaved-to-be teenagers. Subjects and Methods: A study-specific questionnaire was made based on semi-structured interviews with cancer-bereaved youths and tested for face-to-face validity. Through population-based registers, we identified cancer-bereaved children in Sweden who at age 13 to 16 had lost a parent to cancer between 2000 and 2003. Children had to have been living with co-habiting parents, been born in a Nordic country and have an identifiable telephone-number. Out of 851 eligible cancer-bereaved youths, 622 (73%) participated by answering our questionnaire. Registers also provided us with a matched group of non-bereaved youths among which 330 of 421 (78%) participated by answering a less extensive but otherwise identical questionnaire. Data collection went on between February 2009 and March 2010. Participants were between 18 and 25 years of age and parental loss had occurred six to nine years earlier. Results: Twenty percent of cancer-bereaved youths reported having had a period when they deliberately self-injured, compared with 11% in the non-bereaved group. Adjusting for sex/gender, childhood self-destructive behavior, bullying, physical or sexual abuse, and having had no one with whom to share joys or sorrows, increased the odds ratios from 2.0 to 2.3. Among family- and health-care related and possibly modifiable factors associated with self-injury in univariable analysis, we identified poor family cohesion before (RR, 3.4) and after the loss (RR, 3.5); distrust (RR, 1.7); perceived poor efforts to prevent suffering (RR, 1.6); and poor efforts to cure (RR, 1.5). Associations with family cohesion were decreased but remained statistically significant after adjustments for multiple variables, including sex/gender, having been subjected to sexual or physical abuse, and depression. For health-care related factors the associations were attenuated. Eighty-two percent of participants reported moderate to very much trust in the care that was provided to the dying parent. In this group, 11% had moderate to severe depression at time of follow-up, compared with 25% among cancer-bereaved youth reporting distrust (no or little trust) (RR, 2.3). The risk of distrust (no to little trust) was highest among those who never received any end-of-life information (RR, 2.5), those informed only afterwards (RR, 3.2) and those how don´t know or remember if end-of-life medical information was given (RR, 1.7). Other important risk-factors for distrust were perception of poor health-care efforts to cure the parent and poor relationship with the well, surviving parent. Ninety-eight percent reported the opinion that teenagers about to lose a parent to cancer should be told when death is imminent. Among 367 (60%) who had been told, 62% were told by parents, 11% by parents together with health-care professionals, and 14% by health-care professionals alone. Mutual pretending and lack of awareness that death was near were prominent reasons for not talking about death in the family. Forty-four percent of the teenagers realized that death was imminent on the last day, half of them only hours before the loss. An additional 19% never realized it. Conclusions: Self-injury is twice as common in cancer-bereaved youth. Poor family cohesion before and after the loss are important risk-factors for self-injury. The influence of perceptions of poor quality care varies with family cohesion, life-time adversities and depression. One fifth of cancer-bereaved youth reported distrust in the health-care provided in the final week of the dying parent´s life. End-of-life information by a physician before the loss lowered the distrust in health-care. Almost all teenagers want to know when a parent´s death is imminent but many are never told

Self-injury in youths who lost a parent to cancer: nationwide study of the impact of family-related and health-care-related factors.

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

Teenagers want to be told when a parent's death is near: A nationwide study of cancer-bereaved youths' opinions and experiences.

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

Losing a parent to cancer as a teenager: Family cohesion in childhood, teenage, and young adulthood as perceived by bereaved and non-bereaved youths.

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.The Swedish Cancer Foundation [2008–758]; the Gålö Foundation; the Kamprad Family Foundation for Entrepreneurship; and the Mats Paulssons Stiftelse supported the research project

Losing a parent to cancer as a teenager: Family cohesion in childhood, teenage, and young adulthood as perceived by bereaved and non-bereaved youths.

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.The Swedish Cancer Foundation [2008–758]; the Gålö Foundation; the Kamprad Family Foundation for Entrepreneurship; and the Mats Paulssons Stiftelse supported the research project

Distrust in the End-of-Life Care Provided to a Parent and Long-Term Negative Outcomes Among Bereaved Adolescents: A Population-Based Survey Study.

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

How to support teenagers who are losing a parent to cancer : Bereaved young adults' advice to healthcare professionals—A nationwide survey

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

Family cohesion predicts long-term health and well-being after losing a parent to cancer as a teenager: A nationwide population-based study

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

Family cohesion predicts long-term health and well-being after losing a parent to cancer as a teenager : :A nationwide population-based study

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