OBJECTIVES: To assess the availability and efficacy of interventions open to adolescents and young adults (AYAs; 15-25 years) bereaved by a parent's or sibling's cancer.
METHODS: A systematic review of peer-reviewed literature on interventions available to AYAs bereaved by a parent's or sibling's cancer was conducted through searches of six online databases (PsycINFO, Medline, Scopus, Embase, SWAB and Web of Science Core Collection).
RESULTS: Database and reference searches yielded 2985 articles, 40 of which were included in the review. Twenty-two interventions were identified that were available for bereaved young people. However, only three were specific to young people bereaved by familial cancer, and none were specific to AYAs. Interventions primarily provided opportunities for participants to have fun, share their experiences and/or memorialise the deceased; psychoeducation about bereavement, grief and coping was less common. Only six interventions had been satisfactorily evaluated, and no intervention targeted or analysed data for AYAs separately. Overall, some evidence suggested that interventions (especially those that were theoretically grounded) had positive effects for bereaved young people. However, benefits were inconsistently evidenced in participants' self-reports and often only applied to subgroups of participants (eg, older youths and those with better psychological well-being at baseline).
CONCLUSIONS: Considering the very limited number of interventions specific to bereavement by familial cancer and the lack of interventions targeting AYAs specifically, it is unclear whether currently available interventions would benefit this population. The population of AYAs bereaved by familial cancer is clearly under-serviced; further development and evaluation of interventions is needed.
Chaque année, en France, 1200 Adolescents et Jeunes adultes
(AJA) entre 15 et 25 ans sont diagnostiqués pour un cancer. Ses
formes les plus fréquentes sont les lymphomes, les sarcomes, les
tumeurs germinales, les leucémies aiguës et les tumeurs du
système nerveux central.
Dans cette classe d'âge, de nombreuses études ont mis en corrélation le risque plus élevé de mauvaise observance des traitements
associés à celui de rechute de la maladie.
En plus des problématiques adolescentes, ils sont à la fois confrontés
à une maladie grave avec risque vital, et à des traitements
prolongés sur plusieurs mois qui vont interférer avec leurs projets
d’études, de travail et leurs relations familiales et sociales. L’adolescent ou le jeune adulte à qui l’on annonce un diagnostic de cancer va connaître, en plus des transformations corporelles liées à la maladie et aux traitements, nombre de bouleversements sur les liens familiaux, amicaux et amoureux, sur la scolarité et la ormation professionnelle, la recherche d'un premier emploi…
La création d’unités ou d’équipes multidisciplinaires AJA avec un
personnel spécifiquement formé, permet de créer un cadre favorable
à une observance thérapeutique adaptée, et un accompagnement médical et humain au plus près des besoins des patients, tout en soutenant leurs projets de vie.
Nous proposons, par cet article, de présenter la prise en charge AJA en oncologie, et plus spécifiquement celle de l’Institut Curie.
This cross-sectional survey compares the risk of mental health problems like poor well-being, complicated and prolonged grief, and mental disorders between young adults experiencing a divorced or non-divorced parent’s death. 190 participants were recruited from Facebook via the Danish National Center for Grief. Well-being was measured using WHO-5, prolonged grief using PG-13 and complicated grief using BGQ, and common mental disorders using CMDQ. Findings confirmed deleterious effects on mental health in young adults experiencing parental death, but higher risk, when losing a divorced parent compared to a non-divorced parent, was associated to prolonged grief, complicated grief, bodily distress syndrome, and alcohol misuse.
Few studies have investigated palliative and end-of-life care processes among young adults (YAs), aged 18-34 years, who died of cancer. This retrospective study used a natural language processing algorithm to identify documentation and timing of four process measures in YA cancer decedents' medical records: palliative care involvement, discussions of goals of care, code status, and hospice. Among 2878 YAs, 138 had a recorded date of death. In this group, 54.3% had at least one process measure documented early (31-180 days before death), 18.0% had only late documentation of process measures (0-30 days), and 27.5% had none documented.
Le thème de la mort chez les jeunes est l’objet de nombreuses recherches de toutes les disciplines des sciences humaines et sociales. En premier lieu, relevons l’analyse des dimensions touchant le suicide dans cette population. L’étude des représentations sociales entourant le suicide met ainsi en évidence des dimensions socioculturelles pour expliquer sa signification, les facteurs de prévalence, les croyances qui le sous-tendent et leurs liens avec la dimension religieuse (Mereus, 2006). Les données sur les idéations suicidaires et les conduites suicidaires issues de recherches dans plusieurs contextes nationaux démontrent la variabilité des prévalences, des stratégies et des déterminants identitaires, psychologiques et socio-économiques (Peyre et al., 2014; Caron et Robitaille, 2007; Volant, 2006; Belloc, Leichsenring et Chabrol, 2004) et mettent en évidence des enjeux éthiques (Corriveau et al., 2016) tout en soulignant l’importance des campagnes de prévention et des suivis psychologiques.
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.
Purpose: Adolescents and young adults (AYAs) with terminal cancer are a marginalized population with unique medical and psychosocial needs. AYAs commonly report challenges with their health care experiences, however, little is known about the experiences of the health care providers (HCPs) who deliver this specialized care. The purpose of the current study was to understand HCPs' experiences caring for AYAs with terminal cancer.
Methods:Nine HCPs (four nurses and five physicians) took part in in-depth semistructured interviews. Participants were eligible if they were a nurse or physician in Atlantic Canada; cared for at least one AYA patient with terminal cancer in the past 3 years; and were able to speak and understand English. Data were analyzed using interpretive phenomenological analysis.
Results: Analyses revealed four superordinate themes present in the data: (1) many unknowns and uncertainties associated with providing care for AYAs compounded by minimal or no training specifically concerning this population; (2) an intense emotional experience compared with caring for patients with terminal cancer of other ages; (3) personal identification with patients and their families; and (4) attempts to make sense of the circumstance thwarted by feelings of injustice and unfairness.
Conclusions: HCPs experienced unique emotional and logistical challenges when caring for AYAs with terminal cancer, which can influence the care they provide. HCPs' experiences highlight the need for training to support clinicians in caring for AYAs with terminal cancer to optimize their own well-being and delivery of health care services to this population.
Purpose: This study uses the newly developed Bereaved Cancer Needs Inventory to identify the unmet psychosocial needs of adolescents and young adults who have experienced the death of a parent or sibling to cancer, and to explore the relationship between unmet needs and psychological distress.
Methods: In total, 278 bereaved offspring and 38 bereaved siblings (12–25 years) completed the 58-item Bereaved Cancer Needs Inventory (BCNI) and the Kessler psychological distress scale (K10).
Results: Bereaved offspring reported 27 unmet needs on average (SD = 16.87, range: 0–58); 94% indicated at least one unmet need, with 80% indicating 10 or more needs. Bereaved siblings reported 23 unmet needs on average (SD = 17.30, range: 0–57); 97% indicated at least one unmet need, with 68% indicating 10 or more needs. For both bereaved offspring and siblings, the needs for “support from other young people” and “time out and recreation” were most frequently reported as unmet. Approximately half of all participants reported high to very high levels of psychological distress. There was a significant positive relationship between the number of unmet needs and the psychological distress score on the K10 for both groups.
Conclusions: Bereaved offspring and bereaved siblings report unmet psychosocial needs across many domains, which are associated with their levels of psychological distress. Findings suggest the BCNI may be used by healthcare professionals to identify unmet needs and direct clients to the appropriate services, resources, or support; with the intent to reduce their risk of mental illness and psychological distress.
Although male suicide has received research attention, the gendered experiences of men bereaved by male suicide are poorly understood. Addressing this knowledge gap, we share findings drawn from a photovoice study of Canadian-based men who had lost a male friend, partner, or family member to suicide. Two categories depicting the men's overall account of the suicide were inductively derived: (a) unforeseen suicide and (b) rationalized suicide. The "unforeseen suicides" referred to deaths that occurred without warning wherein participants spoke to tensions between having no idea that the deceased was at risk while reflecting on what they might have done to prevent the suicide. In contrast, "rationalized suicides" detailed an array of preexisting risk factors including mental illness and/or substance overuse to discuss cause-effect scenarios. Commonalities in unforeseen and rationalized suicides are discussed in the overarching theme, "managing emotions" whereby participants distanced themselves, but also drew meaning from the suicide.
Palliative care offers patients with a serious illness and their families access to services that can improve quality of life, mood, and symptoms. However, the term palliative care is often confused with end of life or hospice services limiting its application to persons with chronic illnesses who might benefit. Non-hospice palliative care is a term that is emerging to more accurately reflect the broader care model that palliative care represents. The aim of this review was to identify the characteristics of published nonhospice palliative care interventions. We derived our sample predominantly from a recently published systematic review and meta-analysis and selected studies published since the review. Inclusion criteria were: self-described palliative care intervention studies using randomized designs for participants with lifelimiting illnesses aged 18 years or older. These 38 studies fell into 3 broad categories: primary, specialty, and hybrid models. Common challenges among these models include limited education of generalists, limited reimbursement, and limited access in certain areas. However, increasing palliative care usage has also been associated with increased hospice use and appropriate timing of referrals.
Context: Although access to subspecialty pediatric palliative care (PPC) is increasing, little is known about the role of PPC for children with advanced heart disease (AHD).
Objectives: The objective of this study was to examine features of subspecialty PPC involvement for children with AHD.
Methods: This is a retrospective single-institution medical record review of patients with a primary diagnosis of AHD for whom the PPC team was initially consulted between 2011 and 2016.
Results: Among 201 patients, 87% had congenital/structural heart disease, the remainder having acquired/nonstructural heart disease. Median age at initial PPC consultation was 7.7 months (range 1 day-28.8 years). Of the 92 patients who were alive at data collection, 73% had received initial consultation over one year before. Most common indications for consultation were goals of care (80%) and psychosocial support (54%). At initial consultation, most families (67%) expressed that their primary goal was for their child to live as long and as comfortably as possible. Among deceased patients (n = 109), median time from initial consultation to death was 33 days (range 1 day-3.6 years), and children whose families expressed that their primary goal was for their child to live as comfortably as possible were less likely to die in the intensive care unit (P = 0.03) and more likely to die in the setting of comfort care or withdrawal of life-sustaining interventions (P = 0.008).
Conclusion: PPC involvement for children with AHD focuses on goals of care and psychosocial support. Findings suggest that PPC involvement at end of life supports goal-concordant care. Further research is needed to clarify the impact of PPC on patient outcomes.
Enduring the death of a family member during emerging adulthood is associated with intense grief. In total, 15 adults between the ages of 18–32 were interviewed about their experiences. Results indicated emerging adults experience a range of mixed emotions after losing a parent, face unique challenges related to their developmental stage, and tend to be resilient moving forward. Emerging adults need opportunities to engage with others experiencing grief related to parental death and may benefit from specialized support groups that address the developmental challenges inherent among this population.
BACKGROUND: Finding alternative ways to reconnect with the deceased is a common feature of bereavement. However, it is currently unclear how bereaved children or young people establish and develop a "continuing bond" with deceased family members.
AIM: To investigate how bereaved young people continue bonds with deceased family members.
DESIGN: A systematically conducted narrative review was conducted using six electronic databases: CINAHL, Medline, EMBASE, PsycINFO, PubMed, and BNI. Limiters were applied to peer-reviewed articles published in English. Studies were assessed for methodological quality using the Joanna Briggs Institute Critical Appraisal Tools.
RESULTS: Twenty articles were included in the review. Three overarching themes were generated: unintended connections, intended connections, and internalized connections.
CONCLUSION: Bereaved young people establish a sense of connection with deceased family members through various means (e.g., unprovoked or spontaneous reminders, physical mementos, internalized memories). Some connections are unintended and occur spontaneously. However, other young people will specifically seek ways to remember the deceased to provide a sense of enduring connection.
Advance care planning is being increasingly recognized as a component of quality in end-of-life care, but standardized documentation in the electronic health record has not yet been achieved, undermining interdisciplinary communication about care needs and limiting research opportunities. We examined the electronic health records of nine adolescent and young adults with cancer who died after participation in an advance care planning clinical trial (N = 30). In this secondary analysis of this subgroup, disease trajectory and end-of-life information were abstracted from the electronic health record, and treatment preferences from the original study were obtained. All deceased participants older than 18 years had a surrogate decision maker identified in the electronic health record, and all deceased participants had limitations placed on their care, varying from 1.5 hours up to 2 months before death. However, assessment of relations between treatment preferences and end-of-life care was difficult and revealed the presence of circumstances that advance care planning is designed to avoid, such as family conflict. Lack of an integrated health care record regarding advance care planning and end-of-life care makes both care coordination and examination of the association between planning and goal concordant care more difficult.
People bereaved by suicide have an increased risk of suicide and suicide attempt, yet report receiving less support than people bereaved by other sudden deaths. Reductions in support may contribute to suicide risk, yet their nature is unclear. We explored the impact of suicide bereavement on the interpersonal relationships of young adults in the UK using an online survey to collect qualitative data. We conducted thematic analysis of free-text responses from 499 adults to questions capturing the impact of bereavement on relationships with partners, close friends, close family, extended family, and other contacts. We identified four main themes describing the changes in relationships following the suicide: (1) Social discomfort over the death (stigma and taboo; painfulness for self or others to discuss; socially prescribed grief reactions); (2) social withdrawal (loss of social confidence; withdrawal as a coping mechanism); (3) shared bereavement experience creating closeness and avoidance; (4) attachments influenced by fear of further losses (overprotectiveness towards others; avoiding attachments as protective). These findings contribute to understanding deficits in support and pathways to suicidality after suicide bereavement. Such disrupted attachments add to the burden of grief and could be addressed by public education on how to support those bereaved by suicide.
CONTEXT: Patient preferences influence end-of-life (EOL) care which patients receive. However, preferences regarding EOL care among adolescent and young adult (AYA) cancer population remain unclear.
OBJECTIVES: The objective of the study was to evaluate preferences regarding EOL care among AYA cancer population.
METHODS: We evaluated preferences regarding EOL care as a part of a comprehensive multicenter questionnaire study investigating the experience and needs of Japanese AYA cancer population.
RESULTS: A total of 349 AYA cancer population (213 AYA cancer patients and 136 AYA cancer survivors) were evaluated. Eighteen six percent (296/344), 53% (180/338), 88% (301/341) and 61% (207/342) of participants with valid response preferred to have prognostic disclosure, receive palliative chemotherapy for incurable cancer with limited efficacy at the expense of considerable toxicity, actively use palliative care and stay home at EOL, respectively. In multivariate analysis, the preference regarding prognostic disclosure was associated positively with no child status (OR = 3.05, p = 0.003) and negatively with history of chemotherapy (OR = 0.23, p = 0.009), the preference regarding palliative chemotherapy for incurable cancer with limited efficacy at the expense of considerable toxicity was associated positively with status under active cancer treatment (OR = 1.74, p = 0.03) and the preference of staying home at EOL was positively associated with anxiety (OR = 1.72, p = 0.04).
CONCLUSION: This study elucidated preferences regarding EOL care among Japanese AYA cancer population. These findings may help health care practitioners to have better understanding of preferences regarding EOL care among this population.
A 14-year-old girl with a history of complex congenital heart disease in end-stage heart failure and with cyclic vomiting was admitted to our hospice program in 2012. Before hospice enrollment, she had required intermittent infusions of dexmedetomidine to abort cyclic vomiting episodes after cardiac catheterization procedures. Following a hospital admission in November 2013, she was discharged home in the care of our hospice on a continuous dexmedetomidine infusion. She remained on this infusion at varying doses (range of 0.1-0.38 mcg/kg/hour) for nearly three years, until her death in September 2016. This report describes the palliative use of dexmedetomidine in this patient and difficulties related to the use of this medication during the course of her care.
To explore possible distinctive features of online memorials for youth suicides, amid concerns about glorification, we compared public Facebook memorials for suicides and road traffic accident deaths, using Linguistic Inquiry and Word Count software. People who posted on memorial sites wrote at greater length about suicides, using longer words and more quotation marks. Words suggesting causation and achievement were more prevalent in suicide memorials. Thematic content for the two types of death was more similar than different. Suicide memorial posts had more tentative words, non-fluencies, and question marks, suggesting that people were struggling to make sense of these deaths.
Background: Location of death (LOD) is an important aspect of end-of-life (EOL) care. Adolescents and young adults (YAs) with pediatric malignancies are increasingly treated in pediatric institutions. YAs, generally defined as 18-39 years old, deserve specific attention because adults have unique developmental and social considerations compared with younger patients.
Objective: The goal of this retrospective cohort study was to understand the effect of treatment by a pediatric oncology program on EOL experiences for YAs. Specifically, we examined LOD, hospice, and palliative care (PC) involvement in a cohort of YAs who died of cancer in a large, quaternary care pediatric hospital.
Methods: This was a retrospective cohort study of patients >= 18 years of age, who died of cancer between January 1, 2010, and December 31, 2017. Standardized data were abstracted from the institutional cancer registry and the electronic medical record.
Results: YAs in this cohort more commonly died in the hospital (54.9%). Lack of hospice involvement and the presence of a documented do-not-resuscitate (DNR) order were significantly associated with inpatient death. The majority of patients had long-standing PC involvement (95.8%, median 318 days), a DNR order (78.9%), and had enrolled in hospice care (60.6%) before death.
Conclusions: These results suggest that a significant proportion of YAs with cancer remain inpatient for EOL care. Pediatric oncologists and PC teams may benefit from additional training in the unique psychosocial needs of YAs to optimize EOL care for these older patients.
PURPOSE: Siblings of children and young people diagnosed with cancer are commonly reluctant to talk about their experiences due to the circumstances of the illness situation. This article aims to bring voice to experience and inform practice by investigating what and how three young sisters narrate about their illness experiences in personal blogs on the Internet.
METHODS: A narrative methodology for the analysis of life storytelling was applied primarily to investigate the sister's coping strategies and support needs.
RESULTS: The results show how the sisters constructed their own space for narration, with the main aims of expressing their feelings about the illness and seeking social support. The telling of their experiences along with encouraging comments from a supportive audience enabled a change in position from feeling neglected and silenced to being a recognized agent and caring sister. In addition, through their narrative coping the sisters went from powerless to powerful in their position in relation to cancer.
CONCLUSION: The results highlight the need for siblings to be able to narrate experience in a supportive context, where the processing of their relationship with the ill sister/brother should be understood as an important element of their coping with cancer and death.