https://orcid.org/0000-0001-5119-7489
Figures
Abstract
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.
Citation: Birgisdóttir D, Grenklo TB, Kreicbergs U, Steineck G, Fürst CJ, Kristensson J (2023) Family cohesion predicts long-term health and well-being after losing a parent to cancer as a teenager: A nationwide population-based study. PLoS ONE 18(4): e0283327. https://doi.org/10.1371/journal.pone.0283327
Editor: Amir Radfar, University of Central Florida, UNITED STATES
Received: January 27, 2022; Accepted: March 7, 2023; Published: April 12, 2023
Copyright: © 2023 Birgisdóttir et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Data Availability: In order to assure data confidentiality and to protect the privacy of the research participants, the datasets generated and/or analyzed during the current study are not publicly available due to legal and ethical restrictions as described by the Swedish law (2003:460) and the Swedish Ethical Review Authority (https://etikprovningsmyndigheten.se) regarding processing of sensitive data. Data can be made available from the Research Data Office, Data Access Unit, at the Karolinska Institute, Stockholm, Sweden (contact via rdo@ki.se), for researchers who meet the criteria for access to confidential data.
Funding: The Swedish Cancer Foundation (2008–758), https://www.cancerfonden.se (GS); The Kamprad Family Foundation for Entrepreneurship, https://familjenkampradsstiftelse.se/in-english/ (CJ); The Mats Paulsson Foundation, https://www.matspaulssonstiftelserna.com (CJ), and the Gålö Foundation, https://www.galostiftelsen.se (UK) supported the research project. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Competing interests: The authors have declared that no competing interests exist.
Abbreviations: PHQ-9, The Patient Health Questionnaire-9 scale; RR, Risk ratio; CI, Confidence interval
Introduction
The early loss of a parent to death during childhood places significant stress on children and adolescents [1–3] and has been shown to have various effects on the health and well-being of children and adolescents, including higher risk of depression [4–6], anxiety [5–10], suicide attempts [11,12] and self-injurious behaviors [13,14], compared to their non-bereaved peers. The factors most consistently found to affect the health and well-being of children and adolescents, in general as well as in bereavement, relate to family functioning [7,15,16].
The relationship between the surviving parent and the bereaved child seems to play a big role [17,18], including warmth, emotional connection and positive parenting [15,19–21], as does the mental health of the surviving parent [9,15,16,22,23]. The concept of family can be described as a complex social unit, that includes members who interact with each other and influence each other’s behaviors [24], in a way that can be both supportive or disruptive to the wellbeing of the individuals in the family [25]. One of the central aspects of family function is family cohesion [26].
Family cohesion is a broad concept that captures the emotional bonds between family members, the feeling of togetherness, along with support, intimacy and time spent together. Family cohesion can vary over time and is highly influenced by external factors and strains, as well as from factors within the family [26]. It has been suggested that more studies are needed to identify subgroups of bereaved children and adolescents that are at risk of developing mental health problems [27] or are in need of bereavement support [28–30]. When it comes to teenagers and youths’ own perception of family cohesion after the loss of a parent and its relation to long-term health and well-being, the literature is limited.
Aim
The aim of this study was to investigate the level of self-reported family cohesion the first year after the death of a parent and its association with long-term: quality of life; well-being; depressive symptoms; symptoms of anxiety; emotional numbness; and problematic sleeping, in young adults (age 18–26) who lost their parent to cancer at the age of 13–16.
Method
This study is a part of a Swedish nationwide population-based study on young adults who lost a parent to cancer as teenagers [13,31,32]. The Regional Ethical Review Board of Karolinska Institute, Stockholm, Sweden, approved the study (2007/836-31).
Participants
Individuals who had died from cancer (based on International Classification of Diseases, 10th revision (ICD-10), codes C00–C96) before the age of 65, in the years 2000 to 2003, were identified in the Swedish National Causes of Death Register. The register holders at the Multi-generation register, at Statistics Sweden, then used this information to identify young adults who had lost a parent between the ages of 13 and 16, which is equivalent to the age of lower secondary school (or junior high school). The decision to narrow the focus of the study to this age span was made to account for the great variation in levels of maturity that occurs throughout the teenage years [33]. Furthermore, for inclusion in this study, the participants also needed to have been born in one of the Nordic countries, have the same registered address as both parents at the time of death, and have the surviving parent alive at the time of follow-up, which took place in 2009 to 2010. Furthermore, all participants needed to be living in Sweden at the time of the study, have identifiable telephone numbers, and be able to read, write and understand Swedish.
Ethical approval and consent to participate
The research was performed in accordance with the Helsinki Declaration and was reviewed by the Regional Ethics Review Board at the Karolinska Institute (2007/836–31), which gave approval for the research to be carried out. Each participant was informed both orally and in writing about the aim of the study, as well as their right to withdraw from the study at any time. Each participant gave informed consent for their participation as required by Swedish Ethical Review Authority and in accordance with Swedish law.
Questionnaire development
A study-specific questionnaire was used to collect the data. The development of the questionnaire followed well established routines described in previous articles [34,35]. The content and wording of the questions were based on topics identified in semi-structured interviews with 15 cancer-bereaved youth (aged 13–25) as well as previous questionnaires from the research group, the bereavement literature, and interviews with three experts specialized in palliative care and bereavement. Face validity was tested in think-aloud interviews with six of the previously interviewed individuals and nine new participants [13]. After final adjustments the questionnaire included 271 question items, asking about the participants’ background, experiences before and after the death of their parent, as well as their current health and well-being. A total of 36 question items were considered relevant for this study, namely family cohesion variables (n = 2), health-related outcome variables (n = 18), potential confounding variables (n = 10) and other background variables (n = 6).
Measurements
- The perception of family cohesion was evaluated with the following question:
- Did you as a family have good cohesion during:
- a) your childhood (until you were approximately 11–12 years old)?
- b) your teenage years (until the death of your parent)?
- c) 0–6 months after your loss?
- d) 7–12 months after your loss?
- e) today?
For each sub-question, the participants were able to choose from four response alternatives and family cohesion was labelled poor if the response was “No, not at all” or “Yes, a little”, while “Yes, moderate” and “Yes, very good” were labelled as good family cohesion.
To use as an exposure variable in this study, sub-questions c) and d) were combined into one variable labelled “Self-reported family cohesion the first year after the loss” and those reporting poor family cohesion 0–6 and/or 7–12 months after the loss of a parent constituted the exposure group.
Depression was measured using the Patient Health Questionnaire-9 scale (PHQ-9), with the cut-off set to ≥10 points to indicate moderate to severe depression. As described in a systematic review of the Patient Health Questionnaire scales, the PHQ-9 is an efficient and valid scale to use for detection, differentiation and monitoring of depression [36].
Following the approach “one phenomenon–one direct question”, in which the question is related to a real-life phenomenon [37], the outcomes of well-being, quality of life and emotional numbness were measured with the following single-item questions: “Have you experienced high levels of well-being in the last month?”; “Have you had a good quality of life the last month?”; and “Have you felt emotionally numb (cut off, like you were in a bubble or had a wall around you) in the last month?”. Four single-item questions, including “Have you felt persistent worries (fear, anxiety) in the last month?” and “Have you had sudden attacks of anxiety (fear) in the last month?”, were used to measure symptoms of anxiety. Problematic sleeping was measured with two questions, one of which was “Have you had trouble falling asleep at night in the last month?”
The questions used for the six outcome measurements can be seen together with the response alternatives and their categorization in S1 Table.
Data collection
Each participant that met the inclusion criteria received an invitation letter with information about the project, followed by an informative telephone call from a research assistant. If oral consent to participate in the study was given, the questionnaire and an ethics information sheet along with a separate reply card was sent out. Information about their right to withdraw from the study at any time was given both orally and in writing. To ensure anonymity, the questionnaires were returned in pre-stamped envelopes, separately from the reply cards. To minimize the risk of causing distress to participants, questions were carefully phrased and data collection was avoided during holiday seasons and the anniversaries of parental loss.
Statistical analyses
Associations between self-reported family cohesion the first year after the death of a parent and the six health-related outcome variables were assessed using modified Poisson regression (with robust variance) [38]. The results are presented as relative risk ratios (RR) with corresponding confidence intervals (CI) set at 95%. Individuals with missing values were excluded from the statistical analysis for each calculation.
For the purpose of minimizing the risk of systematic errors [37,39] the literature was searched for risk factors, related to family cohesion or to any of the outcome variables, that could be considered as possible confounding variables. After a discussion within the research group, based on the literature, previous research from the group, and with the help of directed acyclic graphs, 10 possible confounding variables were selected and used to build a multivariable Poisson regression model. Initially, the possible confounders were each classified as either “Background variables”, “Family-related variables” or variables regarding “Adverse events during childhood and the awareness time of parent’s imminent death”. The possible confounding variables, their categories and prevalence can be seen in Table 1.
For each of the outcome variables, adjusted RRs were calculated with the model in three steps, subsequently adjusting for the three groups of possible confounders. Further analysis was also made, in which crude and adjusted RRs were re-calculated, as described above, but now with the data stratified by the gender of the deceased parent.
Results
A total of 851 cancer-bereaved young adults, aged 18 to 26, were eligible for participation in the study, 6.5 percent were not reachable, 7.8 percent declined participation and 12.7 percent did not return the questionnaire. In the end, 622 individuals answered and returned the questionnaire (73% response rate), of which 49.8% were male and 50.2% female. Table 2 presents an overview of the study participant characteristics.
In total, 134 (21.7%) of the parentally bereaved participants experienced family cohesion as poor (no/little) at some point during the first year after the death of a parent while 483 (78.3%) reported good (moderate/very good) family cohesion during the same period (missing values: 5 (0.8%)).
Among the cancer-bereaved young adults reporting poor family cohesion the first year after the loss of a parent, 31.6% reported moderate to severe depression according to the PHQ-9 depression scale at the time of the survey (six to nine years after the loss of the parent) compared to 8.6% of those reporting good family cohesion in the first year post loss. Also, for those reporting poor family cohesion, 36.4% reported low levels of well-being compared to 15.9% of those reporting good family cohesion. For all the health-related indicators under investigation a higher prevalence was seen among those who reported poor family cohesion the first year after the loss, compared to those who reported good family cohesion during the same period (Fig 1).
Note, for graphical reasons, only the frequencies between 0% and 50% are included.
Table 3 shows the crude and adjusted RRs, with corresponding 95% CI, for the long-term negative health-related outcomes in relation to the self-reported family cohesion the first year after the loss of a parent to cancer. The cancer-bereaved young adults that reported poor family cohesion the first year after the death of a parent had a higher risk of reporting symptoms of moderate to severe depression in the last two weeks, compared to those reporting good family cohesion (RR: 3.67, 95%CI: 2.50–5.40). They were also more likely to report low well-being (RR: 2.28, 95%CI: 1.68–3.10), symptoms of anxiety (RR: 2.32, 95%CI: 1.64–3.29), problematic sleeping (RR: 1.80 95%CI: 1.30–2.48) and emotional numbness (RR: 2.86, 95%CI: 1.91–4.30) once a week or more in the last month, compared to those reporting good family cohesion the first year after the loss. All these results stayed statistically significant after adjusting for possible confounders in the three-step multivariable modified Poisson regression model (Table 3). In addition, those reporting poor family cohesion the first year after the loss were also more likely to report low quality of life (RR: 1.50 95%CI: 1.02–2.22) at the time of the survey, but this difference did not remain statistically significant in the adjustments for possible confounding factors (Table 3).
Further analysis of the data was also performed with the data stratified by the gender of the diseased parent. Both crude and adjusted RRs were calculated again using the same three groups of possible confounders as before, with the results presented in Table 3. In both the paternally and maternally bereaved participants, a higher risk of long-term moderate to severe depression was seen in those that had experienced poor family cohesion the first year after loss compared to those that had reported good family cohesion. However, a higher risk of reporting symptoms of anxiety and emotional numbness was statistically significant only among the maternally bereaved, after final adjustments for possible confounding factors. In contrast, a higher risk of low well-being and problematic sleeping at the time of the survey remained statistically significant only among the paternally bereaved participants.
Discussions
The main results of this study show that poor family cohesion, as reported by a parentally bereaved youth, the first year after losing a parent to cancer as a teenager was strongly associated with psychological health-related problems six to nine years after the loss. The health-related problems included symptoms of moderate to severe depression, low well-being, symptoms of anxiety, problematic sleeping and emotional numbness. Our results are in line with the growing literature concluding that family environment seems to be a major mediating factor in the health and well-being of bereaved-individuals [7,9,21,40–43]. This study adds to this body of knowledge with results that are based on a long-term follow up.
Regarding anxiety and depression, the results are in harmony with other studies showing that good family function is a protecting factor for psychological well-being in bereaved children [1,7,9,21,40,42]. Well-being has also been shown to be associated with high levels of family cohesion in adolescents in the general population [44].
When it comes to sleeping problems in bereaved youth, the existing literature is very limited. A qualitative study on teenagers in the USA showed that sleep disturbance was a common theme the first year after losing a parent [45]. Studies on bereaved adults have shown shorter duration and lower quality of sleep compared to non-bereaved adults [8,43]. The results of the present study show that the cancer-bereaved participants with poor family cohesion the first year after the loss had almost two times the risk of experiencing sleeping problems once a week or more the in last month compared to those with moderate or good family cohesion after the loss. This result is in line with studies, not related to bereavement, that have shown a strong association between family functioning (including cohesion) and sleeping problems in adolescents [46,47]. Our study does not provide any explanation about the causal link between family cohesion and long-term sleeping problems and more studies are needed to understand the mechanism that lies behind this association.
To the extent of our knowledge, no other study has looked at the association between family cohesion after loss and long-term emotional numbness in this population. However, emotional numbness is a common reaction following loss and can be used as one of the indicators for prolonged grief [48]. Previous studies have found that family function right after the death of a family member can predict the family members’ capacity to cope with the loss after the death [49,50]. Although not to be answered with our results, this may give us a reason to speculate if the reported emotional numbness in our study might possibly be an indicator for long term prolonged grief, but that would require further investigation.
Mothers have been shown more likely to adapt better to life after the death of their spouse [51] and to better respond to their children’s loss-related needs [52], compared to widowed fathers. Although previous reports based on the same study population showed higher prevalence of reported poor family cohesion among the maternally bereaved participants than the paternally bereaved [53], our results did not give a clear indication of what role the gender of the diseased parent plays on bereaved youths’ long-term health and well-being. Although not within the scope of this article, a sensitivity analysis was also undertaken with the data stratified by both gender of the deceased parent and gender of the participant. We did not proceed further with this analysis owing to loss of power, but based on the prevalence numbers alone we saw that female participants reported higher total prevalence of long-term health-related problems, both among the paternally and the maternally bereaved participants (S2 Table). Although we cannot draw any conclusions, these observations might raise our interest to further study the complex phenomenon of family cohesion, loss, and long-term health among parentally bereaved youth taking gender roles into consideration.
Methodological considerations
Large sample size and high participation rate (73.1%) are some of the main strengths of this study. Additional strength lies in the self-reported data collected directly from the target group, through a thoroughly prepared study-specific questionnaire, based on qualitative interviews with bereaved teenagers and young adults. Through pilot testing the questions were adjusted and carefully formulated before being face-validated in think-aloud interviews. Moreover, the broad variety of health-related outcome variables strengthened the study by giving a better picture of the overall psychological health and well-being of the participants.
When it comes to the limitations that should be considered when interpreting the results of the study, we can first mention that the study measures complex phenomena and it is possible that the analysis didn’t cover all potential confounding factors. It is also uncertain if the findings of this study are generalizable to other groups of bereaved adolescents, for example, those that have lost a parent to other diseases or accidents. Also, not including participants from other family constellations, such as children of single parents or children living with same gender parents and children of first-generation immigrants, further limits the generalizability of the study, that should be highly relevant to look into in future studies. However, these limits were made for practical reasons such as to avoid language barriers or the need to assess an even larger set of other possible confounding factors from i.e., trauma experiences of war or refugee. Also, for ethical reasons, to prevent the possible harm that might arise if some of the participants not living with both parents at the time of death, were unaware of their biological parents’ death, before receiving an invitation to the study, as demanded by the register holders.
The cross-sectional design of the study requires the possibility of recall-induced bias to be taken into consideration. However, the option of performing the study with a prospective cohort design was ruled out for ethical and practical reasons. Furthermore, a study investigating the accuracy of reports on family environment showed that collecting data with a retrospective design can be valuable for capturing the emotional dimension of family life, including family cohesion [54].
For most of the questions used in this study we followed the well-established, so-called “one phenomenon–one direct question” approach [37], meaning that the questions are designed to directly address a real-life phenomenon. This approach allowed us to collect a comprehensive set of data from the study participants, based on the subjective experiences of the participants themselves. Self-perceived health and well-being is individual, bound to one’s own perspective and feelings [55]. This applies also to the perception of family cohesion, which is similarly influenced by circumstances and culture [44]. A study on adolescents newly diagnosed with cancer and their families showed that adolescents rated family cohesion, communication and adaptability poorer than their parents, highlighting how important it is to involve adolescents when assessing family cohesion [56]. Since much of existing literature has looked at family cohesion from the parents’ perspective, this study adds important information to better understand the link between family cohesion and bereavement based on the perspective of the youths themselves.
Not using standardized instruments to measure the level of family cohesion could be viewed as a limitation, since we only measured the participants own subjective perception of the level of family cohesion. Therefore, we cannot know what exactly the concept of family cohesion inhibits for them. However, using a global single-item question can also be considered a strength and be preferred over a multiple-item scale in some cases, especially when the intention is to measure complex phenomena [57]. Using a single item question to measure the complex concept of family cohesion was therefore considered appropriate to serve the intention of this study, which was to measure the participants own subjective perception of the level of family cohesion. Moreover, all the instruments available to measure family cohesion had a large number of items [58] and none of them had been validated for our target group. It should also be noted that the concept of family cohesion was well understood by all of the participants involved in the face-validity interviews. Further studies could be made to gain a deeper knowledge on what the concept of family cohesion means to bereaved teenagers and young adults, the underlying mechanisms of how and why the family cohesion chances after the death of a parent and what factors can support good family cohesion in families facing bereavement.
Clinical implications
There is a strong need to focus on health promotion within palliative care [59–61], including the prevention of ill health as a result of bereavement. The results of this study show that poor family cohesion the first year after the death of a parent was associated with negative psychological health and well-being long-term. Although more research is needed, the evidence we have today suggests that supportive interventions can be beneficial to families with minor children facing bereavement [30,62]. Interventions shown to be beneficial for children and young people include education about wide range of normative grief responses, support with the recognition and regulation of difficult emotions, and to find ways to reduce distress and strengthen healthy coping strategies [63]. Also, to help the youth create continuing bonds with the deceased parent, engage in meaning making, and see possibilities in a future after the loss of a parent [63–65]. Facilitating parental grief and supporting the bereaved parent to be better equipped to meet the needs of the children and strengthen positive family interactions have also been shown to be important for healthy coping after the loss of a parent [1,63,64].
After an assessment of clinical routines and structures in place when a parent dies, undertaken a few years ago, the Swedish health authorities reported that children facing the death of a parent are often forgotten and that there is a lack of clinical routines to support them [66]. At the same time, studies highlight the importance of children and teenagers being able to prepare for the death of a parent [67–69]. Teenagers also want to be told about the parent’s disease prognosis [70] and when the death is imminent [71]. After a systematic review of interventions for bereaved children and adolescents, Kühne et al. (2012) concluded that successful interventions for the bereaved family need to start in palliative care and continue after the death [62]. This recommendation is in line with the conclusion of two systematic reviews stating that even brief interventions may prevent problems in psychological health for children and adolescents, providing they take place early and are aimed at children at higher risk [30,72]. In line with those findings, other studies have highlighted the importance of routinely identifying and supporting high-risk families during the period of illness and after the death [41,73–75] to minimize long-term ill health. The results of the current study can strengthen those findings. If supporting families during the period of parental illness and immediately after the loss will contribute to better family function and cohesion that might improve long-term health and well-being among bereaved-adolescent, then this fact should be highlighted for those working in palliative care and with bereaved families. New efforts could be put in place to create routines in clinical practice that support health-care personnel identifying when there are minor children in a family facing the loss of a parent and recognizing their need for information and support. Future studies focusing on whether a single item question about family cohesion could be valid to use in clinical practice and during bereavement support, to assist with identifying families that might be in need of further support, could be of interest.
Conclusion
Self-reported poor family cohesion the first year after the loss of a parent to cancer was strongly associated with a variety of long-term negative outcomes related to psychological health and well-being among bereaved youth. To identify families at risk of poor cohesion and to provide them with the support needed to strengthen family cohesion might be a health prevention worth the effort, possibly preventing long-term suffering in teenage offspring facing the death of a parent.
Supporting information
S1 Table. Questions used for evaluating health-related outcomes, response options and categorization.
https://doi.org/10.1371/journal.pone.0283327.s001
(DOCX)
S2 Table. Prevalence of self-reported family cohesion the first year after the loss of a parent to cancer and long-term health-related outcomes, stratified by gender of the deceased parent and gender of the participant.
https://doi.org/10.1371/journal.pone.0283327.s002
(DOCX)
Acknowledgments
We would like to express our sincere appreciation to all of the study participants for sharing their experience with us. We would also like to thank Tommy Nyberg and Anton Nilsson for their valuable statistical advice.
References
- 1. Haine RA, Ayers TS, Sandler IN, Wolchik SA. Evidence-Based Practices for Parentally Bereaved Children and Their Families. Prof Psychol Res Pr. 2008;39(2):113–21. pmid:20585468; PubMed Central PMCID: PMC2888143.
- 2. Patterson P, Rangganadhan A. Losing a parent to cancer: a preliminary investigation into the needs of adolescents and young adults. Palliative & supportive care. 2010;8(3):255–65. pmid:20875169.
- 3. Pfeffer CR, Karus D, Siegel K, Jiang H. Child survivors of parental death from cancer or suicide: depressive and behavioral outcomes. Psycho-oncology. 2000;9(1):1–10. Epub 2000/02/11. pmid:10668054.
- 4. Kaplow JB, Saunders J, Angold A, Costello EJ. Psychiatric symptoms in bereaved versus nonbereaved youth and young adults: a longitudinal epidemiological study. Journal of the American Academy of Child and Adolescent Psychiatry. 2010;49(11):1145–54. Epub 20100927. pmid:20970702; PubMed Central PMCID: PMC2965565.
- 5. Appel CW, Frederiksen K, Hjalgrim H, Dyregrov A, Dalton SO, Dencker A, et al. Depressive symptoms and mental health-related quality of life in adolescence and young adulthood after early parental death. Scand J Public Health. 2019;47(7):782–92. Epub 20181017. pmid:30328374.
- 6. Berg L, Rostila M, Hjern A. Parental death during childhood and depression in young adults—a national cohort study. Journal of child psychology and psychiatry, and allied disciplines. 2016;57(9):1092–8. Epub 20160405. pmid:27058980.
- 7. Brent DA, Melhem NM, Masten AS, Porta G, Payne MW. Longitudinal effects of parental bereavement on adolescent developmental competence. Journal of clinical child and adolescent psychology: the official journal for the Society of Clinical Child and Adolescent Psychology, American Psychological Association, Division 53. 2012;41(6):778–91. Epub 20120925. pmid:23009724; PubMed Central PMCID: PMC3493857.
- 8. Buckley T, Bartrop R, McKinley S, Ward C, Bramwell M, Roche D, et al. Prospective study of early bereavement on psychological and behavioural cardiac risk factors. Intern Med J. 2009;39(6):370–8. pmid:19460057.
- 9. Cerel J, Fristad MA, Verducci J, Weller RA, Weller EB. Childhood bereavement: psychopathology in the 2 years postparental death. Journal of the American Academy of Child and Adolescent Psychiatry. 2006;45(6):681–90. pmid:16721318.
- 10. Simbi CMC, Zhang Y, Wang Z. Early parental loss in childhood and depression in adults: A systematic review and meta-analysis of case-controlled studies. Journal of affective disorders. 2020;260:272–80. Epub 20190730. pmid:31521863.
- 11. Jakobsen IS, Christiansen E. Young people’s risk of suicide attempts in relation to parental death: a population-based register study. Journal of child psychology and psychiatry, and allied disciplines. 2011;52(2):176–83. Epub 20101029. pmid:21039482.
- 12. Niederkrotenthaler T, Floderus B, Alexanderson K, Rasmussen F, Mittendorfer-Rutz E. Exposure to parental mortality and markers of morbidity, and the risks of attempted and completed suicide in offspring: an analysis of sensitive life periods. J Epidemiol Community Health. 2012;66(3):233–9. Epub 20101005. pmid:20924054.
- 13. Bylund Grenklo T, Kreicbergs U, Hauksdottir A, Valdimarsdottir UA, Nyberg T, Steineck G, et al. Self-injury in teenagers who lost a parent to cancer: a nationwide, population-based, long-term follow-up. JAMA pediatrics. 2013;167(2):133–40. pmid:23403894.
- 14. Rostila M, Berg L, Arat A, Vinnerljung B, Hjern A. Parental death in childhood and self-inflicted injuries in young adults-a national cohort study from Sweden. Eur Child Adolesc Psychiatry. 2016;25(10):1103–11. Epub 20160301. pmid:26932156.
- 15. Lin KK, Sandler IN, Ayers TS, Wolchik SA, Luecken LJ. Resilience in parentally bereaved children and adolescents seeking preventive services. Journal of clinical child and adolescent psychology: the official journal for the Society of Clinical Child and Adolescent Psychology, American Psychological Association, Division 53. 2004;33(4):673–83. pmid:15498735.
- 16. Krattenmacher T, Kuhne F, Ernst J, Bergelt C, Romer G, Moller B. Parental cancer: factors associated with children’s psychosocial adjustment—a systematic review. Journal of psychosomatic research. 2012;72(5):344–56. Epub 20120314. pmid:22469276.
- 17. Sandler I, Tein JY, Wolchik S, Ayers TS. The Effects of the Family Bereavement Program to Reduce Suicide Ideation and/or Attempts of Parentally Bereaved Children Six and Fifteen Years Later. Suicide Life Threat Behav. 2016;46 Suppl 1(Suppl 1):S32–8. pmid:27094109; PubMed Central PMCID: PMC6108320.
- 18. Sandler IN, Ma Y, Tein JY, Ayers TS, Wolchik S, Kennedy C, et al. Long-term effects of the family bereavement program on multiple indicators of grief in parentally bereaved children and adolescents. Journal of consulting and clinical psychology. 2010;78(2):131–43. pmid:20350025; PubMed Central PMCID: PMC2874830.
- 19. Shapiro DN, Howell KH, Kaplow JB. Associations among mother-child communication quality, childhood maladaptive grief, and depressive symptoms. Death studies. 2014;38(1–5):172–8. Epub 20130827. pmid:24524545.
- 20. Howell KH, Shapiro DN, Layne CM, Kaplow JB. Individual and psychosocial mechanisms of adaptive functioning in parentally bereaved children. Death studies. 2015;39(1–5):296–306. Epub 20150407. pmid:25848701.
- 21. Haine RA, Wolchik SA, Sandler IN, Millsap RE, Ayers TS. Positive parenting as a protective resource for parentally bereaved children. Death studies. 2006;30(1):1–28. Epub 2005/11/22. pmid:16296557.
- 22. Wolchik SA, Tein JY, Sandler IN, Ayers TS. Stressors, quality of the child-caregiver relationship, and children’s mental health problems after parental death: the mediating role of self-system beliefs. Journal of abnormal child psychology. 2006;34(2):221–38. Epub 20060224. pmid:16502140.
- 23. Bugge KE, Darbyshire P, Rokholt EG, Haugstvedt KT, Helseth S. Young children’s grief: parents’ understanding and coping. Death studies. 2014;38(1–5):36–43. Epub 20130801. pmid:24521044.
- 24.
Kerr ME, Bowen M. Family Evaluation: An Approach Based on Bowen Theory. New York: W. W. Norton; 1988.
- 25.
Pfeiffer S, In-Albon T. Family Systems. In: Asmundson GJG, editor. Comprehensive Clinical Psychology. Oxford: Elsevier; 2022. p. 185–201.
- 26. Olson D. FACES IV and the Circumplex Model: validation study. J Marital Fam Ther. 2011;37(1):64–80. pmid:21198689.
- 27. Kaplow JB, Wamser-Nanney R, Layne CM, Burnside A, King C, Liang LJ, et al. Identifying Bereavement-Related Markers of Mental and Behavioral Health Problems Among Clinic-Referred Adolescents. Psychiatr Res Clin Pract. 2021;3(2):88–96. Epub 20201216. pmid:36101665; PubMed Central PMCID: PMC9175856.
- 28. Luecken LJ, Roubinov DS. Pathways to lifespan health following childhood parental death. Soc Personal Psychol Compass. 2012;6(3):243–57. Epub 20120302. pmid:23555319; PubMed Central PMCID: PMC3613285.
- 29.
World Health Organization. Guidelines for the Management of Conditions Specifically Related to stress [Report]. Geneva: World Health Organization; 2013. Available from: https://www.who.int/publications/i/item/9789241505406.
- 30. Bergman AS, Axberg U, Hanson E. When a parent dies—a systematic review of the effects of support programs for parentally bereaved children and their caregivers. BMC Palliat Care. 2017;16(1):39. Epub 20170810. pmid:28797262; PubMed Central PMCID: PMC5553589.
- 31. Grenklo TB, Kreicbergs UC, Valdimarsdottir UA, Nyberg T, Steineck G, Furst CJ. Communication and trust in the care provided to a dying parent: a nationwide study of cancer-bereaved youths. Journal of clinical oncology: official journal of the American Society of Clinical Oncology. 2013;31(23):2886–94. Epub 20130715. pmid:23857973.
- 32. Bylund Grenklo T, Kreicbergs U, Valdimarsdottir UA, Nyberg T, Steineck G, Furst CJ. Self-injury in youths who lost a parent to cancer: nationwide study of the impact of family-related and health-care-related factors. Psycho-oncology. 2014;23(9):989–97. Epub 20140404. pmid:24706480.
- 33.
Berk LE. Part VI Adolescence: The transition to adulthood. Development through the Lifespan. Seventh ed. Hoboken, NJ: Pearson Education, Inc.; 2018. p. 366–435.
- 34. Omerov P, Steineck G, Runeson B, Christensson A, Kreicbergs U, Pettersen R, et al. Preparatory studies to a population-based survey of suicide-bereaved parents in Sweden. Crisis. 2013;34(3):200–10. Epub 2012/12/25. pmid:23261907.
- 35. Kreicbergs U, Valdimarsdottir U, Onelov E, Henter JI, Steineck G. Talking about death with children who have severe malignant disease. The New England journal of medicine. 2004;351(12):1175–86. pmid:15371575.
- 36. Kroenke K, Spitzer RL, Williams JB, Lowe B. The Patient Health Questionnaire Somatic, Anxiety, and Depressive Symptom Scales: a systematic review. Gen Hosp Psychiatry. 2010;32(4):345–59. Epub 20100507. pmid:20633738.
- 37. Steineck G, Bergmark K, Henningsohn L, al-Abany M, Dickman PW, Helgason A. Symptom documentation in cancer survivors as a basis for therapy modifications. Acta oncologica (Stockholm, Sweden). 2002;41(3):244–52. pmid:12195743.
- 38. Zou G. A modified poisson regression approach to prospective studies with binary data. American journal of epidemiology. 2004;159(7):702–6. pmid:15033648.
- 39. Steineck G, Hunt H, Adolfsson J. A hierarchical step-model for causation of bias-evaluating cancer treatment with epidemiological methods. Acta oncologica (Stockholm, Sweden). 2006;45(4):421–9. pmid:16760178.
- 40. Brent D, Melhem N, Donohoe MB, Walker M. The incidence and course of depression in bereaved youth 21 months after the loss of a parent to suicide, accident, or sudden natural death. The American journal of psychiatry. 2009;166(7):786–94. Epub 20090501. pmid:19411367; PubMed Central PMCID: PMC2768496.
- 41. Dowdney L. Children bereaved by parent or sibling death. Psychiatry. 2008;7(6):270–5.
- 42. Stroebe M, Schut H, Stroebe W. Health outcomes of bereavement. Lancet. 2007;370(9603):1960–73. pmid:18068517.
- 43. Hall M, Buysse DJ, Dew MA, Prigerson HG, Kupfer DJ, Reynolds CF, 3rd. Intrusive thoughts and avoidance behaviors are associated with sleep disturbances in bereavement-related depression. Depress Anxiety. 1997;6(3):106–12. pmid:9442984.
- 44. Vandeleur CL, Jeanpretre N, Perrez M, Schoebi D. Cohesion, Satisfaction With Family Bonds, and Emotional Well-Being in Families With Adolescents. Journal of Marriage and Family. 2009;71(5):1205–19. WOS:000272344500007.
- 45. Harris ES. Adolescent bereavement following the death of a parent: an exploratory study. Child Psychiatry Hum Dev. 1991;21(4):267–81. pmid:1855398.
- 46. Kalavana T, Lazarou C, Christodoulou C. Family environment in relation to eating and health risk behaviors in adolescents. Medical & Health Science Journal. 2011;7(3):15–25.
- 47. Reigstad B, Jorgensen K, Sund AM, Wichstrom L. Prevalences and correlates of sleep problems among adolescents in specialty mental health services and in the community: what differs? Nord J Psychiatry. 2010;64(3):172–80. pmid:19883190.
- 48. World Health Organization. ICD-11. Prolonged grief disorder criteria 2018 [cited 2021 11.25]. Available from: https://icd.who.int/browse11/l-m/en#/ http://id.who.int/icd/entity/1183832314.
- 49. Traylor ES, Hayslip B Jr., Kaminski PL, York C. Relationships between grief and family system characteristics: a cross lagged longitudinal analysis. Death studies. 2003;27(7):575–601. pmid:12962122.
- 50. Bylund-Grenklo T, Birgisdottir D, Beernaert K, Nyberg T, Skokic V, Kristensson J, et al. Acute and long-term grief reactions and experiences in parentally cancer-bereaved teenagers. BMC Palliat Care. 2021;20(1):75. Epub 20210527. pmid:34044835; PubMed Central PMCID: PMC8161967.
- 51. Yopp JM, Park EM, Edwards T, Deal A, Rosenstein DL. Overlooked and underserved: Widowed fathers with dependent-age children. Palliative & supportive care. 2015;13(5):1325–34. Epub 20141111. pmid:25384999.
- 52. Saldinger A, Porterfield K, Cain AC. Meeting the needs of parentally bereaved children: a framework for child-centered parenting. Psychiatry. 2004;67(4):331–52. Epub 2005/04/02. pmid:15801376.
- 53. Birgisdottir D, Bylund Grenklo T, Nyberg T, Kreicbergs U, Steineck G, Furst CJ. Losing a parent to cancer as a teenager: Family cohesion in childhood, teenage, and young adulthood as perceived by bereaved and non-bereaved youths. Psycho-oncology. 2019;28(9):1845–53. Epub 20190718. pmid:31250504; PubMed Central PMCID: PMC6771813.
- 54. Bell DC, Bell LG. Accuracy of Retrospective Reports of Family Environment. J Child Fam Stud. 2018;27(4):1029–40. Epub 20171109. pmid:29915516; PubMed Central PMCID: PMC6003663.
- 55. Eva KW, Regehr G. Self-assessment in the health professions: a reformulation and research agenda. Acad Med. 2005;80(10 Suppl):S46–54. pmid:16199457.
- 56. Phillips-Salimi CR, Robb SL, Monahan PO, Dossey A, Haase JE. Perceptions of communication, family adaptability and cohesion: a comparison of adolescents newly diagnosed with cancer and their parents. International journal of adolescent medicine and health. 2014;26(1):19–26. Epub 2014/02/07. pmid:24501152; PubMed Central PMCID: PMC5497841.
- 57. Fuchs C, Diamantopoulos A. Using single-item measures for construct measurement in management research. Die Betriebswirtschaft. 2009;69(2):195–210.
- 58. Hamilton E, Carr A. Systematic Review of Self-Report Family Assessment Measures. Family process. 2016;55(1):16–30. Epub 20151119. pmid:26582601.
- 59. Aoun SM, Breen LJ, O’Connor M, Rumbold B, Nordstrom C. A public health approach to bereavement support services in palliative care. Aust N Z J Public Health. 2012;36(1):14–6. pmid:22313700.
- 60. Rumbold B, Aoun S. Bereavement and palliative care: A public health perspective. Progress in Palliative Care. 2013;22(3):131–5.
- 61. Breen LJ, Aoun SM, O’Connor M, Rumbold B. Bridging the gaps in palliative care bereavement support: an international perspective. Death studies. 2014;38(1–5):54–61. Epub 20130809. pmid:24521046.
- 62. Kuhne F, Krattenmacher T, Beierlein V, Grimm JC, Bergelt C, Romer G, et al. Minor children of palliative patients: a systematic review of psychosocial family interventions. Journal of palliative medicine. 2012;15(8):931–45. pmid:22849598; PubMed Central PMCID: PMC3396138.
- 63. Kentor RA, Kaplow JB. Supporting children and adolescents following parental bereavement: guidance for health-care professionals. Lancet Child Adolesc Health. 2020;4(12):889–98. Epub 2020/11/21. pmid:33217358.
- 64.
Pearlman MY, Cloitre M, Schwalbe KDA. Grief in childhood: fundamentals of treatment in clinical practice. [Digital format]. 1st ed. ed: American Psychological Association; 2010.
- 65. Kaplow JB, Layne CM. Sudden loss and psychiatric disorders across the life course: toward a developmental lifespan theory of bereavement-related risk and resilience. The American journal of psychiatry. 2014;171(8):807–10. pmid:25082485.
- 66.
Socialstyrelsen [National Board of Health and Welfare]. När förälder oväntat avlider—Resultat och slutsatser från tre kartläggningar om ansvar samt strukturer för information och stöd. Socialstyrelsen: Sweden. 2013. Available from: https://www.socialstyrelsen.se/globalassets/sharepoint-dokument/artikelkatalog/ovrigt/2013-11-31.pdf.
- 67. Dalton L, Rapa E, Ziebland S, Rochat T, Kelly B, Hanington L, et al. Communication with children and adolescents about the diagnosis of a life-threatening condition in their parent. Lancet. 2019;393(10176):1164–76. Epub 20190314. pmid:30894272.
- 68. MacPherson C, Emeleus M. Children’s needs when facing the death of a parent from cancer: part two. International journal of palliative nursing. 2007;13(12):590–7. Epub 2008/04/11. pmid:18399384.
- 69. Hanna JR, McCaughan E, Semple CJ. Challenges and support needs of parents and children when a parent is at end of life: A systematic review. Palliative medicine. 2019;33(8):1017–44. Epub 20190627. pmid:31244381.
- 70. Alvariza A, Lovgren M, Bylund-Grenklo T, Hakola P, Furst CJ, Kreicbergs U. How to support teenagers who are losing a parent to cancer: Bereaved young adults’ advice to healthcare professionals-A nationwide survey. Palliative & supportive care. 2017;15(3):313–9. Epub 20161003. pmid:27692012.
- 71. Bylund-Grenklo T, Kreicbergs U, Uggla C, Valdimarsdottir UA, Nyberg T, Steineck G, et al. Teenagers want to be told when a parent’s death is near: A nationwide study of cancer-bereaved youths’ opinions and experiences. Acta oncologica (Stockholm, Sweden). 2015;54(6):944–50. Epub 20141203. pmid:25467964.
- 72. Currier JM, Holland JM, Neimeyer RA. The effectiveness of bereavement interventions with children: a meta-analytic review of controlled outcome research. Journal of clinical child and adolescent psychology: the official journal for the Society of Clinical Child and Adolescent Psychology, American Psychological Association, Division 53. 2007;36(2):253–9. pmid:17484697.
- 73. Eklund R, Kreicbergs U, Alvariza A, Lovgren M. Children’s Self-Reports About Illness-Related Information and Family Communication When a Parent Has a Life-Threatening Illness. Journal of family nursing. 2020;26(2):102–10. Epub 20200113. pmid:31931660.
- 74. Breen LJ, O’Connor M. Family and social networks after bereavement: experiences of support, change and isolation. Journal of Family Therapy. 2011;33(1):98–120. WOS:000285767100007.
- 75. Kopchak Sheehan D, Burke Draucker C, Christ GH, Murray Mayo M, Heim K, Parish S. Telling adolescents a parent is dying. Journal of palliative medicine. 2014;17(5):512–20. Epub 20140418. pmid:24745829; PubMed Central PMCID: PMC4012636.