Cultural adaptation process of cancer-related interventions: A step-by-step guide.

INTRODUCTION: To contribute to the reduction and elimination of cancer-related local and global health disparities, interventions must be culturally adapted to reach diverse cultural groups and demonstrate success in improving clinical and psychosocial outcomes. We provide step-by-step information on the conceptual and methodological challenges involved in culturally adapting interventions and provide guidelines, suggestions, tools, and concrete steps for implementing the process. METHODS: This article provides information, guidelines, suggestions, tools, and concrete steps, based on three rigorous models of cultural adaptations, for implementing this process, followed with examples from the field, to illustrate the conceptual and methodological challenges involved in culturally adapting interventions. CONCLUSION: Our systematic step-by-step approach recommends (1) the guidance of well-established research models; (2) use of multiple data sources and input from various stakeholders (i.e., from patients and providers); (3) qualitative and quantitative data usage and integration; (4) a steering committee with multiple perspectives, stakeholders assessments, and qualitative analyses; (5) consensus meetings; and (6) diverse representation on the steering committee and/or research team.

The HAM-D6 through the lens of grief: Clinical considerations for administering the six-item Hamilton Depression Rating Scale in the context of bereavement.

OBJECTIVES: Diagnosing mental health challenges in bereavement is controversial; however, regardless of one's position on this matter, assessments of bereaved individuals continue to occur in clinical and research contexts. It is critical for evaluations to account for contextual factors that are unique to bereavement. This paper summarizes considerations for diagnosing depression in bereaved individuals, focusing on use of the six-item Hamilton Depression Rating Scale (HAM-D6). METHODS: Following a literature review of the Hamilton Depression Rating Scale (HAM-D) and various versions, we summarized decision rules we used in scoring the HAM-D6 in a study of parents bereaved by cancer. We expanded on existing scoring guidelines for each of the HAM-D6 items, including depressed mood, work and activities, general somatic symptoms, guilt, psychic anxiety, and psychomotor retardation, and illustrated clinical distinctions and probes for assessors to consider through case examples from our research with bereaved parents. RESULTS: Considerations for assessing depressive symptoms and behavior changes in the context of bereavement were summarized. Symptoms that may be diagnostic of depression in some populations may reflect other factors in the bereaved, such as a change in priorities, social expectations surrounding grief, or avoidance of grief activators. Nuanced factors are important for assessors to consider when administering the HAM-D6 to bereaved individuals. SIGNIFICANCE OF RESULTS: Our sharing of these considerations is not intended to promote diagnosis of depression in bereavement but to highlight the unique contextual factors that distinguish symptoms of depression from common experiences of grievers when applying an assessment tool such as the HAM-D6. While validated measures can be constraining, they can have clinical utility; they may increase standardization in research, help clinicians communicate with each other, advance the field more generally to understand the varying struggles bereaved individuals experience, and systemically facilitate access to services via managed care.

An examination and proposed definitions of family members' grief prior to the death of individuals with a life-limiting illness: A systematic review.

BACKGROUND: Research has extensively examined family members' grief prior to the death of an individual with a life-limiting illness but several inconsistencies in its conceptualization of related constructs, yet significant conceptualization issues exist. AIM: This study aimed to identify and characterize studies published on family members grief before the death of an individual with a life-limiting illness, and propose definitions based on past studies in order to initiate conceptual clarity. DESIGN: A mixed-method systematic review utilized six databases and was last conducted July 10, 2021. The search strategy was developed using Medical Subject Headings. This study was prospectively registered on PROSPERO (CRD42020166254). RESULTS: One hundred thirty-four full-text articles met inclusion criteria. This review revealed across studies a wide variation in terminology, conceptualization, and characterization of grief before the death. More than 18 terms and 30 definitions have been used. In many cases, the same term (e.g. anticipatory grief) was defined differently across studies. CONCLUSIONS: We found grief occurring before the death of a person with a life-limiting illness, which we termed pre-death grief, is comprised of two distinct constructs: anticipatory grief and illness-related grief. Anticipatory grief is future-oriented and is characterized by separation distress and worry about a future without the person with the life-limiting illness being physically present. Illness-related grief is present-oriented and is characterized by grief over current and ongoing losses experienced during the illness trajectory. These definitions provide the field with uniform constructs to advance the study of grief before the death of an individual with a life-limiting illness.

Development and preliminary evaluation of EMPOWER for surrogate decision-makers of critically ill patients.

OBJECTIVE: The objectives of this study were to develop and refine EMPOWER (Enhancing and Mobilizing the POtential for Wellness and Resilience), a brief manualized cognitive-behavioral, acceptance-based intervention for surrogate decision-makers of critically ill patients and to evaluate its preliminary feasibility, acceptability, and promise in improving surrogates' mental health and patient outcomes. METHOD: Part 1 involved obtaining qualitative stakeholder feedback from 5 bereaved surrogates and 10 critical care and mental health clinicians. Stakeholders were provided with the manual and prompted for feedback on its content, format, and language. Feedback was organized and incorporated into the manual, which was then re-circulated until consensus. In Part 2, surrogates of critically ill patients admitted to an intensive care unit (ICU) reporting moderate anxiety or close attachment were enrolled in an open trial of EMPOWER. Surrogates completed six, 15-20 min modules, totaling 1.5-2 h. Surrogates were administered measures of peritraumatic distress, experiential avoidance, prolonged grief, distress tolerance, anxiety, and depression at pre-intervention, post-intervention, and at 1-month and 3-month follow-up assessments. RESULTS: Part 1 resulted in changes to the EMPOWER manual, including reducing jargon, improving navigability, making EMPOWER applicable for a range of illness scenarios, rearranging the modules, and adding further instructions and psychoeducation. Part 2 findings suggested that EMPOWER is feasible, with 100% of participants completing all modules. The acceptability of EMPOWER appeared strong, with high ratings of effectiveness and helpfulness (M = 8/10). Results showed immediate post-intervention improvements in anxiety (d = -0.41), peritraumatic distress (d = -0.24), and experiential avoidance (d = -0.23). At the 3-month follow-up assessments, surrogates exhibited improvements in prolonged grief symptoms (d = -0.94), depression (d = -0.23), anxiety (d = -0.29), and experiential avoidance (d = -0.30). SIGNIFICANCE OF RESULTS: Preliminary data suggest that EMPOWER is feasible, acceptable, and associated with notable improvements in psychological symptoms among surrogates. Future research should examine EMPOWER with a larger sample in a randomized controlled trial.

Bereavement risk screening: A pathway to psychosocial oncology care.

OBJECTIVE: This qualitative study sought to obtain feedback from stakeholder cancer caregivers and bereaved family members on the implementation of bereavement risk screening in oncology. METHODS: Semi-structured interviews were conducted with 38 family members of patients with advanced cancer (n = 12) and bereaved family members (n = 26) on when and how to effectively implement bereavement risk screening. Data were analyzed using thematic analysis. RESULTS: Many participants indicated that they would be open to completing a self-report screening measure before and after the patient's death. Several suggested screening at multiple timepoints and the importance of follow-up. Participants viewed screening as an opportunity to connect to psychosocial support. CONCLUSIONS: The findings suggest that family members appear supportive of sensitively approached bereavement risk screening before and after a patient's death as an important component of quality psychosocial care. To optimize implementation, bereavement risk screening would involve screening at multiple timepoints and include follow-up. Findings suggest standardized risk screening using a brief, validated self-report tool would be a pragmatic approach to increasing access to bereavement care.

Regret and unfinished business in parents bereaved by cancer: A mixed methods study.

BACKGROUND: Prior research has demonstrated that the presence of regret and unfinished business is associated with poorer adjustment in bereavement. Though there is a growing literature on these constructs among caregivers of adult patients, the literature on regret and unfinished business in bereaved parents has been limited. AIM: The aim of this study was to examine regret and unfinished business in parents bereaved by cancer, as well as their associations with caregiving experiences and prolonged grief. DESIGN: This was a cross-sectional mixed methods study that utilized self-report questionnaires with open-ended items. SETTING/PARTICIPANTS: The multisite study took place at a tertiary cancer hospital and pediatric cancer clinical research institution. Participants were 118 parents (mothers = 82, fathers = 36) who lost a child aged 6 months to 25 years to cancer between 6 months and 6 years prior. RESULTS: Results showed that 73% of the parents endorsed regret and 33% endorsed unfinished business, both of which were more common among mothers than fathers (p ⩽ 0.05). Parents were on average moderately distressed by their regrets and unfinished business, and both regret-related and unfinished business-related distress were associated with distress while caregiving and prolonged grief symptoms. CONCLUSION: Findings have implications for how providers work with families, including increasing treatment decision-making support, supporting parents in speaking to their child about illness, and, in bereavement, validating choices made. Grief interventions that use cognitive-behavioral and meaning-centered approaches may be particularly beneficial.

The Unfinished Business in Bereavement Scale (UBBS): Development and psychometric evaluation.

Although unresolved issues with the deceased are often targeted in bereavement interventions, understanding of this construct has been hampered by the lack of a psychometrically validated scale to assess it. To address this gap, the Unfinished Business in Bereavement Scale (UBBS) was developed and tested in two samples of bereaved adults (n = 292 and 168). In exploratory and confirmatory factor analyses, the UBBS was found to be composed of two related factors. Items tapping into Unfulfilled Wishes pertained to unspoken affirmations or missed opportunities with the deceased. These experiences often emerged in loving relationships and only became problematic when accompanied by high levels of distress. In contrast, Unresolved Conflict pertained to unaddressed disputes or indiscretions. It primarily occurred in relationships characterized by anxiety and conflict and conferred risk for prolonged grief reactions even when endorsed at moderate levels. Other findings strongly supported the internal consistency, concurrent validity, and incremental validity of the UBBS. Unfinished business and meaning made of loss together accounted for 50-60% of the variance in prolonged grief symptoms. Implications for clinical practice and future research are discussed.

How I approach expressing condolences and longitudinal remembering to a family after the death of a child.

Bereaved families fear their child being forgotten by those who knew their loved child, including their child's oncology team. Thoughtfully timed, family-centric condolences shared by pediatric oncology team members have the potential to extend our compassion and kindness toward a family during the darkness of grief. Well-intended medical teams sometimes feel "at a loss" in terms of what to say to a grieving family and how or when to say it. This paper provides a tangible overview of written or verbal condolence communication in a format that can be personalized to the provider and the patient's family.

An open trial of meaning-centered grief therapy: Rationale and preliminary evaluation.

OBJECTIVE: To determine the preliminary feasibility, acceptability, and effects of Meaning-Centered Grief Therapy (MCGT) for parents who lost a child to cancer. METHOD: Parents who lost a child to cancer and who were between six months and six years after loss and reporting elevated levels of prolonged grief were enrolled in open trials of MCGT, a manualized, one-on-one cognitive-behavioral-existential intervention that used psychoeducation, experiential exercises, and structured discussion to explore themes related to meaning, identity, purpose, and legacy. Parents completed 16 weekly sessions, 60-90 minutes in length, either in person or through videoconferencing. Parents were administered measures of prolonged grief disorder symptoms, meaning in life, and other assessments of psychological adjustment preintervention, mid-intervention, postintervention, and at three months postintervention. Descriptive data from both the in-person and videoconferencing open trial were pooled.ResultEight of 11 (72%) enrolled parents started the MCGT intervention, and six of eight (75%) participants completed all 16 sessions. Participants provided positive feedback about MCGT. Results showed postintervention longitudinal improvements in prolonged grief (d = 1.70), sense of meaning (d = 2.11), depression (d = 0.84), hopelessness (d = 1.01), continuing bonds with their child (d = 1.26), posttraumatic growth (ds = 0.29-1.33), positive affect (d = 0.99), and various health-related quality of life domains (d = 0.46-0.71). Most treatment gains were either maintained or increased at the three-month follow-up assessment.Significance of resultsOverall, preliminary data suggest that this 16-session, manualized cognitive-behavioral-existential intervention is feasible, acceptable, and associated with transdiagnostic improvements in psychological functioning among parents who have lost a child to cancer. Future research should examine MCGT with a larger sample in a randomized controlled trial.

Individual meaning-centered psychotherapy for the treatment of psychological and existential distress: A randomized controlled trial in patients with advanced cancer.

BACKGROUND: Patients with advanced cancer have high rates of psychological distress, including depression, anxiety, and spiritual despair. This study examined the effectiveness of individual meaning-centered psychotherapy (IMCP) in comparison with supportive psychotherapy (SP) and enhanced usual care (EUC) in improving spiritual well-being and quality of life and reducing psychological distress in patients with advanced cancer. METHODS: Patients (n = 321) were randomly assigned to IMCP (n = 109), SP (n = 108), or EUC (n = 104). Assessments were conducted at 4 time points: before intervention, midtreatment (4 weeks), 8 weeks after treatment, and 16 weeks after treatment. RESULTS: Significant treatment effects (small to medium in magnitude) were observed for IMCP, in comparison with EUC, for 5 of 7 outcome variables (quality of life, sense of meaning, spiritual well-being, anxiety, and desire for hastened death), with Cohen's d ranging from 0.1 to 0.34; no significant improvement was observed for patients receiving SP (d < 0.15 and P > .05 for all variables). The effect of IMCP was significantly greater than the effect of SP for quality of life and sense of meaning (d = 0.19) but not for the remaining study variables. CONCLUSIONS: This study provides further support for the efficacy of IMCP as a treatment for psychological and existential/spiritual distress in patients with advanced cancer. Significant treatment effects (small to moderate effect sizes) were observed in comparison with usual care, and somewhat more modest differences in improvement (small effect sizes) were observed in comparison with SP. Thus, the benefits of meaning-centered psychotherapy appear to be unique to the intervention and highlight the importance of addressing existential issues with patients approaching the end of life. Cancer 2018. © 2018 American Cancer Society.

Beyond the bucket list: Unfinished and business among advanced cancer patients.

OBJECTIVE: The study aims to examine the prevalence and common themes of unfinished business (UB) and its associations with distress among advanced cancer patients. METHODS: A total of 223 patients from a larger randomized controlled trial of Individual Meaning-Centered Psychotherapy (IMCP) completed self-report questionnaires that assessed UB and UB-related distress, hopelessness, desire for hastened death, anxiety and depression, quality of life, spiritual well-being, and purpose/meaning. Unfinished business themes were identified by qualitative analysis of open-ended data. RESULTS: A total of 161 (72%) patients reported the presence of UB. The mean UB-related distress score was 7.01 (SD = 2.1) out of 10. Results of independent t tests showed that patients with UB reported significantly higher levels of anxiety and lower levels of existential transcendence than patients without UB. Linear regression equations indicated that UB-related distress significantly predicted hopelessness (F1,154  = 9.54, P < 0.05, R2  = 0.058), anxiety (F1,154  = 4.31, P < 0.05, R2  = 0.027), personal meaning (F1,136  = 6.18, P < 0.05, R2  = 0.043), and existential transcendence (F1,119  = 6.7, P < 0.05, R2  = 0.053). Ten UB themes emerged from open-ended responses; UB themes were not associated with UB-related distress or psychological adjustment. CONCLUSIONS: Unfinished business was both prevalent and distressing in our sample. Findings underscore the need to develop and implement interventions designed to help patients resolve or find solace with UB.

Personalized and yet standardized: An informed approach to the integration of bereavement care in pediatric oncology settings.

OBJECTIVE: The death of a child has been associated with adverse parental outcomes, including a heightened risk for psychological distress, poor physical health, loss of employment income, and diminished psychosocial well-being. Psychosocial standards of care for centers serving pediatric cancer patients recommend maintaining at least one meaningful contact between the healthcare team and bereaved parents to identify families at risk for negative psychosocial sequelae and to provide resources for bereavement support. This study assessed how this standard is being implemented in current healthcare and palliative care practices, as well as barriers to its implementation. METHOD: Experts in the field of pediatric palliative care and oncology created a survey that was posted with review and permission on four listservs. The survey inquired about pediatric palliative and bereavement program characteristics, as well as challenges and barriers to implementation of the published standards of care.ResultThe majority of participants (N = 100) self-reported as palliative care physicians (51%), followed by oncologists (19%). Although 59% of staff reported that their center often or always deliver bereavement care after a child's death, approximately two-thirds reported having no policy for the oncology team to routinely assess bereavement needs. Inconsistent types of bereavement services and varying duration of care was common. Twenty-eight percent of participants indicated that their center has no systematic contact with bereaved families after the child's death. Among centers where contacts are made, the person who calls the bereaved parent is unknown to the family in 30% of cases. Few centers (5%) use a bereavement screening or assessment tool.Significance of resultsLack of routine assessment of bereavement needs, inconsistent duration of bereavement care, and tremendous variability in bereavement services suggest more work is needed to promote standardized, policy-driven bereavement care. The data shed light on multiple areas and opportunities for improvement.

A pilot randomized controlled trial of cognitive bias modification to reduce fear of breast cancer recurrence.

BACKGROUND: The most common, persistent concern among survivors of breast cancer is the fear that their disease will return, yet to the authors' knowledge, few interventions targeting fear of cancer recurrence (FCR) have been developed to date. The current pilot study examined the feasibility, acceptability, and preliminary efficacy of a home-delivered cognitive bias modification intervention to reduce FCR. The intervention, called Attention and Interpretation Modification for Fear of Breast Cancer Recurrence (AIM-FBCR), targeted 2 types of cognitive biases (ie, attention and interpretation biases). METHODS: A total of 110 survivors of breast cancer were randomized to receive 8 sessions of 1 of 2 versions of AIM-FBCR or a control condition program. Computer-based assessments of cognitive biases and a self-report measure of FCR were administered before the intervention, after the intervention, and 3 months after the intervention. RESULTS: Improvements in health worries (P = .019) and interpretation biases (rates of threat endorsement [P<.001] and reaction times for threat rejection [P = .007]) were found in those survivors who received AIM-FBCR compared with the control arm. Although only 26% of participants who screened into the study agreed to participate, the trial otherwise appeared feasible and acceptable, with 83% of those who initiated the intervention completing at least 5 of 8 sessions, and 90% reporting satisfaction with the computer-based program used. CONCLUSIONS: The results of the current pilot study suggest the promise of AIM-FBCR in reducing FCR in survivors of breast cancer. Future research should attempt to replicate these findings in a larger-scale trial using a more sophisticated, user-friendly program and additional measures of improvement in more diverse samples. Cancer 2017;123:1424-1433. © 2016 American Cancer Society.

Development of the Bereavement Risk Inventory and Screening Questionnaire (BRISQ): Item generation and expert panel feedback.

OBJECTIVE: Following the loss of a loved one to cancer, a significant subset of bereaved family members are at heightened risk for mental and physical health problems; however, these family members often "fall through the cracks" of the healthcare system. A brief, clinically useful self-report bereavement risk-screening tool could facilitate more effective identification of family members in need of psychosocial support before and after a cancer loss. Thus, the purpose of this study was to develop and refine the Bereavement Risk Inventory and Screening Questionnaire (BRISQ), a self-report bereavement screening tool, and to assess its utility using feedback from bereavement experts. METHOD: Quantitative and qualitative feedback from a panel of 15 clinical and research experts in bereavement was obtained through an online survey to identify the most clinically useful items and understand expert opinion on bereavement screening. RESULTS: The qualitative and quantitative feedback were synthesized, resulting in a 22% reduction of the item pool. While there was a general consensus between experts on the most clinically useful risk factors for bereavement-related mental health challenges and on the utility of screening, they also offered feedback on language and formatting that guided substantial revisions to the BRISQ. SIGNIFICANCE OF RESULTS: These findings were utilized to refine the BRISQ in preparation for a second study to obtain family member feedback on the measure. By incorporating both expert and family member feedback, the intention is to create a screening tool that represents top clinical and research knowledge in bereavement in a way that effectively addresses barriers to care.

Factitious disorder (Munchausen's syndrome) in oncology: case report and literature review.

BACKGROUND: Factitious disorder is where patients repeatedly seek medical care for feigned illnesses in the absence of obvious external rewards; 'Munchausen's syndrome' is the historical name for this disorder. METHOD: We report on a case that was presented to a tertiary oncology center as a suspected rare bone cancer. RESULTS AND CONCLUSIONS: Psychosocial clinicians working in oncology settings should be aware of the complexities of diagnosing factitious disorder in cancer settings where empathy is prominent and suspicion unusual. Moreover, comorbidity can cloud the diagnosis (in this case substance abuse), and, even when accurately diagnosed, there are no evidence-based management approaches to offer to the patient. What seems to linger most after the patient is discharged, usually in a huff, are strong counter-transference feelings and substantial medical bills. Copyright © 2015 John Wiley & Sons, Ltd.

Bereavement Follow-Up After the Death of a Child as a Standard of Care in Pediatric Oncology.

After a child's death to cancer, families commonly want continued connection with the healthcare team that cared for their child, yet bereavement follow-up is often sporadic. A comprehensive literature search found that many bereaved parents experience poor psychological outcomes during bereavement and that parents want follow-up and benefit from continued connection with their child's healthcare providers. Evidence suggests that the standard of care should consist of at least one meaningful contact between the healthcare team and bereaved parents to identify those at risk for negative psychosocial sequelae and to provide resources for bereavement support.

Unfinished Business in Bereavement.

Unfinished business (incomplete, unexpressed or unresolved relationship issues with the deceased) is frequently discussed as a risk factor for chronic and severe grief reactions. However, few empirical studies have examined this construct. The present study aimed to address this gap in the literature by examining the presence and severity of unfinished business as well as common themes of unfinished business reported in open-ended qualitative narratives among a sample of 224 bereaved individuals. In bivariate analyses, self-reported presence of unfinished business and the severity of distress due to unfinished business were both found to be associated with poorer bereavement outcomes. However, after controlling for potential confounds, distress related to unresolved issues with the deceased emerged as a more robust correlate of these outcomes. Qualitative responses were categorized, and the type of reported unfinished business was not significantly related to the degree of unfinished business distress or other bereavement outcomes. These findings provide preliminary justification for bereavement interventions that aim to ameliorate distress related to unresolved relational issues with the deceased.

What do parents want to know when considering autopsy for their child with cancer?

Research has suggested that autopsy in pediatrics is a valued way for parents to better understand and process their child's death, yet physicians often express hesitancy in discussing this topic with parents. To better assist clinicians with initiating discussion about this often sensitive topic, the current study examined bereaved parents' preferences about the timing and content of the autopsy discussion as well as reasons for considering autopsy. This study explored the views of 30 parents who lost a child to a variety of malignancies between 6 months and 6 years ago. Results showed that 36.7% of parents recalled having a discussion about autopsy, and the vast majority of those who did not recall a discussion (89.5%) would have considered an autopsy if it had been discussed. The majority of participants in this study indicated their preference to have the first conversation about autopsy when it becomes clear that cure is no longer possible. Findings suggest that educating parents about the clinical, emotional, and potential research benefits of autopsy and tissue procurement will ultimately help them make informed decisions and understand the importance of autopsy in medical progress. The future research and clinical implications of these findings are discussed.

Talking about familial breast cancer risk: topics and strategies to enhance mother-daughter interactions.

A hereditary cancer predisposition can rattle families, creating dysfunctional interactions. Families need assistance navigating conversations about risk. Because mothers and daughters uniquely share breast cancer experiences and risk, there is a particular need for practitioners to assist them with communication. Three focus groups were conducted with 11 mothers with an elevated cancer risk (with adolescent daughters) receiving genetic counseling. We explored three inquiries to capture mother-daughter communication: emergent challenging topics (e.g., health-promotion behavior, daughter's risk, mother's risk of death), factors complicating discussions (e.g., balancing what to share and when, guilt and blaming, confusion about risk and prevention), and strategies enhancing conversations initiated by mothers (e.g., paying attention to daughter's cues) or practitioners (e.g., inviting daughters to appointments). Findings suggested that mothers struggle to balance eliciting daughters' concerns, providing them with support, and imparting knowledge without overwhelming them. We offer mothers and practitioners guidance to help facilitate these conversations.