INTRODUCTION: The objective of this study was to comprehensively understand the burden experienced by caregivers (CGs) providing home-based, end-of-life care to patients with cancer. We examined the relationship between objective and subjective burden including whether and how burden changes over time. METHODS: A case series of terminal cancer patient-caregiver dyads (nâ =â 223) were recruited from oncology clinics and followed for 12 months or until patient death. Data were collected every other week and in-person from CGs in their homes using quantitative surveys, diaries, and monthly structured observations. RESULTS: Bivariate correlations revealed a significant association between subjective burden and activities of daily living (ADLs), instrumental activities of daily living (IADL), high-intensity tasks, and time spent on ADLs; these correlations varied over time. Models examining the slope of subjective burden revealed little systematic change; spouse caregiver and patient functional limitations were positively, and Black caregiver was negatively associated with subjective burden. Generally, the slopes for measures of objective burden were significant and positive. Models showed subjective burden was positively associated with most measures of objective burden both within caregiver (concurrent measures were positively associated) and between CGs (those with higher subjective also had higher objective). CONCLUSIONS: Cancer caregiving is dynamic; CGs must adjust to the progression of the patient's disease. We found an association between subjective and objective burden both within and between CGs. Black CGs were more likely to report lower subjective burden compared to their White counterparts. More detailed investigation of the sociocultural components that affect caregiver experience of burden is needed to better understand how and where to best intervene with targeted supportive care services.
PURPOSE: Cancer caregiving, a critical component in the cancer-care model, has deleterious effects on the caregiver's physical and mental health. The degree to which these negative effects are uniformly experienced by caregivers is unclear; effects may be exacerbated at the end of life when caregiving is intensified. Not all caregivers have the support of an additional involved support person (secondary caregiver). The impact of the secondary caregiver's absence on the primary caregiver's well-being is understudied. METHODS: Terminal cancer patient-caregiver dyads (n = 223) were recruited from oncology clinics and followed for six months or until patient death. Longitudinal latent growth models were used to characterize the heterogeneity of caregiver physical health and depressive symptoms; characteristics associated with these trajectories are examined. RESULTS: Caregivers were majority female (74%), white (55%) and patient spouses (60%). Two physical health (moderate, stable; initially good, declining) and two depressive symptom (moderate, stable; high, increasing) trajectories were identified. Declining physical health was more likely among caregivers who were healthiest at baseline, had higher levels of education, lower subjective burden, fewer depressive symptoms, cared for patients with fewer functional limitations and reported fewer caregiving tasks rendered by a secondary caregiver. Those with increasing depressive symptoms were more likely to be white, patient's wife, have higher subjective caregiver burden, lower physical health, and care for a patient with greater functional limitations. CONCLUSIONS: Decreasing physical health was evident among caregivers who were initially healthier and reported less assistance from secondary caregivers. Increasing depression was seen in white, female spouses with higher subjective burden. Sample heterogeneity revealed hidden groups unexpectedly at risk in the primary cancer caregiver role to which the oncology care team should be alert.
Caregivers , Neoplasms , Humans , Female , Caregivers/psychology , Neoplasms/therapy , Neoplasms/psychology , Health Status , Mental Health , Spouses/psychology
BACKGROUND: Approaching families of dying or newly deceased patients to donate organs requires specialized knowledge and a mastery of relational communication. As the transplantation field has progressed, Donation Professionals (DPs) are also leading conversations with family decision makers (FDMs) about the donation of uncommon anatomical gifts, such as face, hands, genitalia, referred to as Vascularized Composite Allotransplants (VCA) without much training or experience. To address the need for training, we adapted and beta tested an evidenced-based communication training program for donation discussions to VCA requests. The overarching goal of Communicating Effectively about Donation for Vascularized Composite Allotransplantation (CEaD-VCA) is to increase the number of VCA authorizations and to improve the socioemotional outcomes of FDMs. METHODS: We developed CEaD-VCA, an online, on-demand training program based on the previously tested, evidenced-based communication skills training program designed to train DPs to have conversations about solid organ donation. The training was modified utilizing data from a national telephone survey with DPs and results of 6 focus groups conducted with members of the general public. The survey and focus groups assessed knowledge, attitudes, and barriers to VCA donation. The training was shaped by a partnership with a leading industry partner, the Gift of Life Institute.™ RESULTS: Using the results as a guide, the existing CEaD training program, consisting of interactive eLearning modules, was adapted to include technical information about VCA, foundational communication skills, and two interactive example VCA donation request scenarios to facilitate active learning. Forty-two DPs from two partner Organ Procurement Organizations (OPOs) participated in the beta test of CEaD-VCA. Pre- and post-test surveys assessed the impact of the training. CONCLUSIONS: The training was scored highly by DPs in effectiveness and ease of use. This project created a standardized, accessible, and comprehensive training for DPs to communicate about VCA donation. CEaD-VCA is an example of how to develop a communication skills training for difficult conversations utilizing input from stakeholders, guided by communication theory. It also demonstrates how gaps in communication skills during medical education can be filled utilizing advanced online Learning Management Systems. The training specifically addresses new CMS rules concerning OPO performance metrics.
Education, Medical , Tissue and Organ Procurement , Vascularized Composite Allotransplantation , Humans , Communication , Benchmarking
Introduction: Organ Procurement Organizations seek authorization for tissue donation from next-of-kin of deceased patients. Best practices for achieving contact and authorization are unknown, notably, authorization rates are lower for Black compared to White patients. Research Questions: Can next-of-kin (NOK) contact and authorization rates be improved if they are texted prior to telephone contact? Is a text message containing an infographic more effective, and does an infographic culturally tailored to Black families improve contact and authorization rates in the Black population? Design: This three-armed randomized trial compared (1) telephonic contact initiation (control condition); (2) generic text messaging prior to telephonic contact; and (3) text messaging one of two versions of an infographic prior to telephonic contact: (a) a generic infographic or (b) a culturally tailored infographic (sent to Black NOK only) at one Northeastern Organ Procurement Organization. Results: Tissue Donation Professionals (N = 47) and 2399 White and 745 Black NOK were included, of which 35.6% were registered donors. Authorization rates were much higher for White than Black (40.1% v 16.3%, P < 0.0001). The generic infographic resulted in significantly lower rates of contact for White NOK compared to the control condition 83.5% v 89.5%, P = 0.002), but study arm assignments were not otherwise associated with differences in contact or authorization rates. Conclusion: Although the analysis did not find a benefit for text messaging, it is possible that training for staff making requests and refining the content of the messaging could be more effective.
Purpose: Cancer caregiving, a critical component in the cancer-care model, has deleterious effects on the caregiver's physical and mental health. The degree to which these negative effects are uniformly experienced by caregivers is unclear. The impact of the secondary caregiver's absence on the primary caregivers' well-being is understudied. Methods: Terminal cancer patient-caregiver dyads (n = 223) were recruited from oncology clinics and followed for six months or until patient death. Longitudinal latent growth models were used to characterize the heterogeneity of caregiver physical health and depressive symptoms; characteristics associated with these trajectories are examined. Results: Caregivers were majority female (74%), white (55%) and patient spouses (60%). Two physical health (moderate, stable; initially good, declining) and two depressive symptom (moderate, stable; high, increasing) trajectories were identified. Declining physical health was more likely among caregivers who were healthiest at baseline, had higher levels of education, lower subjective burden, fewer depressive symptoms, cared for patients with fewer functional limitations and reported fewer caregiving tasks rendered by a secondary caregiver. Those with increasing depressive symptoms were more likely to be white, patient's wife, have higher subjective caregiver burden, lower physical health, and care for a patient with greater functional limitations. Conclusions: Decreasing physical health was evident among caregivers who were initially healthier and reported less assistance from secondary caregivers. Increasing depression was seen in white, female spouses with higher subjective burden. Sample heterogeneity revealed hidden groups unexpectedly at risk in the primary cancer caregiver role to which the oncology care team should be alert.
PURPOSE: To form a multifaceted picture of family caregiver economic costs in advanced cancer. METHODS: A multi-site cohort study collected prospective longitudinal data from caregivers of patients with advanced solid tumor cancers. Caregiver survey and out-of-pocket (OOP) receipt data were collected biweekly in-person for up to 24 weeks. Economic cost measures attributed to caregiving were as follows: amount of OOP costs, debt accrual, perceived economic situation, and working for pay. Descriptive analysis illustrates economic outcomes over time. Generalized linear mixed effects models asses the association of objective burden and economic outcomes, controlling for subjective burden and other factors. Objective burden is number of activities and instrumental activities of daily living (ADL/IADL) tasks, all caregiving tasks, and amount of time spent caregiving over 24 h. RESULTS: One hundred ninety-eight caregivers, 41% identifying as Black, were followed for a mean period of 16 weeks. Median 2-week out-of-pocket costs were $111. One-third of caregivers incurred debt to care for the patient and 24% reported being in an adverse economic situation. Whereas 49.5% reported working at study visit 1, 28.6% of caregivers at the last study visit reported working. In adjusted analysis, a higher number of caregiving tasks overall and ADL/IADL tasks specifically were associated with lower out-of-pocket expenses, a lower likelihood of working, and a higher likelihood of incurring debt and reporting an adverse economic situation. CONCLUSIONS: Most caregivers of cancer patients with advanced stage disease experienced direct and indirect economic costs. IMPLICATIONS FOR CANCER SURVIVORS: Results support the need to find solutions to lessen economic costs for caregivers of persons with advanced cancer.
Younger onset colorectal cancer (CRC) rates continue to rise. Survivors younger than the requisite age of population-based screening guidelines experience adverse symptoms, longer appraisal delays, and more advanced-stage diagnoses. This secondary analysis of interviews with n=252 recently diagnosed CRC survivors was completed to compare younger and older survivors' symptoms, attributed causes, and healthcare seeking assets. The original transcripts and quantitative data were divided into two survivor classifications, younger (age <50 years) (N=64) and older (N=188). Bivariate analyses assessed differences between younger and older survivors for symptoms, attributed causes, and seeking healthcare assets. Multiple logistic regression models adjusting for race, sex, income, education, and stage of diagnosis were conducted for significant bivariate findings. An α level .05 was used to detect significance. Bleeding (ð2=3.8, p =0.05) and loss of appetite/weight differed between survivors (ð2=5.3, p=0.02) but not after controlling for sex and race respectively. Younger survivors were more likely to report being too young/healthy to have cancer (ð2=7.8, p<0.01) and social support encouragement to seek healthcare (ð2=6.4, p=0.01). Having a regular healthcare provider was more common among older survivors (ð2=6.4, p=0.01). Logistic regression models also detected age as a significant predictor for all healthcare seeking assets. Clinical and public health practice can benefit from understanding that CRC symptoms may present similarly but assets that facilitate seeking healthcare appraisal differ based upon age. Expanding knowledge of CRC risk factors and symptoms across healthcare professionals and the general public could promote earlier appraisal regardless of age and improve outcomes for younger survivors.
Cancer Survivors , Colorectal Neoplasms , Humans , Middle Aged , Survivors , Health Status , Colorectal Neoplasms/diagnosis , Delivery of Health Care
INTRODUCTION: Increasing family authorization for donation is critical to address the shortage of organs for transplantation, yet there is no standardized method for leading conversations with families about donation. OBJECTIVE: The aim of this rapid scoping review is to identify research assessing the components of dual advocacy, a model to discuss organ donation with grieving families. METHODS: PubMed, Web of Science, and grey literature were searched for studies published from 2012 to the present. Data representing the various dual advocacy components that were empirically tested were extracted. Outcomes of interest were authorization for organ donation or family satisfaction with the donation conversation. RESULTS: Twenty-two articles were identified that tested at least one component of dual advocacy. The most commonly tested component was effective communication about donation (N = 9), including explaining brain death and the donation process. The primary outcome for the majority of studies was donation authorization or conversion rates. Studies that tested all components of dual advocacy (N = 9) had overall positive results while studies that tested a single component had mixed results. DISCUSSION: Although family authorization to donation is critical to addressing the national organ shortage, there has yet to be a standardized method for leading families in the organ donation conversation. Despite the need for organ transplantation in the United States and worldwide, few large-scale studies have rigorously tested the most effective ways to engage families of donor-eligible patients about the organ donation opportunity. There is an urgent need for further research to establish a standard of evidence-based practice.
Organ Transplantation , Tissue and Organ Procurement , Humans , United States , Family , Decision Making , Communication , Tissue Donors
BACKGROUND: Transportation has been identified as a specific source of burden for cancer caregivers. This study examined cancer caregivers' subjective experiences and objectives costs associated with transportation over a 6-month period of providing end-of-life care to a family member or friend. METHODS: This was a multi-site longitudinal, prospective cohort study that followed 223 caregiver-patient dyads. Data were collected using biweekly, semi-structured interviews for up to 6 months and collection of all caregiving related receipts. Interviews were coded and analyzed using a comparative, iterative analysis and actual out of pockets costs were described using descriptive statistics. RESULTS: Over the 6-month study period most caregivers (n = 143; 74%) discussed transportation at one or more timepoints. Average biweekly transportations costs to caregivers were $43.6. Caregivers described (n = 56; 39%) multiple direct and indirect costs of transportation, and 58% (n = 84) discussed the need for transportations services or assistance at the institutional level. CONCLUSIONS: Caregivers described the multifaceted costs of transportation they experienced which are in line with previous work. Alongside descriptions of direct costs, caregivers described key opportunity costs, such as personal and work time forgone to transporting patients. Caregivers also made suggestions for institutional and/or civic based solutions to facilitate reliable modes of transportation, rather than individual-level intervention.
Caregivers , Neoplasms , Humans , Prospective Studies , Costs and Cost Analysis , Family , Neoplasms/therapy
OBJECTIVE: The extent of shared decision making (SDM) use in the care of Black patients is limited. We explored preferences, needs, and challenges of Black patients to enhance SDM offerings. METHODS: We performed interviews with 32 Black patients receiving type 2 diabetes care in safety-net primary care practices caring predominantly for Black people. RESULTS: The following 4 themes emerged: preference for humanistic communication, need to account for the role of family in decision making, need for medical information sharing, and mistrust of clinicians. CONCLUSION: Given the dearth of research on SDM among ethnic and racial minorities, this study offers patient-perspective recommendations to improve SDM offerings for Black patients in primary care settings. To enhance SDM with Black patients, acknowledgment of the importance of storytelling as a strategy, to place medical information in a context that makes it meaningful and memorable, is recommended. Triadic SDM, in which family members are centrally involved in decision making, is preferred over classical dyadic SDM. There is a need to reconsider the universalism assumption underlying contemporary SDM models and the relevancy of current SDM practices that were developed mostly without the feedback of participants of ethnic, racial, and cultural minorities.Annals "Online First" article.
Decision Making, Shared , Diabetes Mellitus, Type 2 , Humans , Black or African American , Decision Making , Diabetes Mellitus, Type 2/therapy , Patient Participation
PURPOSE: Financial strain and stressful life events can constrain open communication within families. A cancer diagnosis can bring heightened emotional stress and financial strain for most cancer patients and their families. We evaluated how level of comfort and willingness to discuss important but sensitive economic topics affected longitudinal assessments of family relationships, exploring both within-person and between partner effects over 2 years after a cancer diagnosis. METHODS: A case series of hematological cancer patient-caregiver dyads (n = 171) were recruited from oncology clinics in Virginia and Pennsylvania and followed for 2 years. Multi-level models were developed to examine the associations between comfort discussing economic aspects of cancer care and family functioning. RESULTS: Broadly, caregivers and patients who were comfortable discussing economic topics reported higher family cohesion and lower family conflict. Dyads' assessments of family functioning were influenced both by their own and their partners level of communication comfort. Overtime, caregiver but not patients perceived a significant decrease in family cohesion. CONCLUSIONS: Efforts to address financial toxicity in cancer care should include examination of how patients and families communicate as unaddressed difficulties can have detrimental effects on family functioning in the long term. Future studies should also examine whether the prominence of specific economic topics, such as employment status, varies depending on where the patient is in their cancer journey. IMPLICATIONS FOR CANCER SURVIVORS: In this sample, cancer patients did not perceive the decline in family cohesion that was reported by their family caregiver. This is an important finding for future work that aims to identify the timing and nature to best intervene with caregiver supports to mitigate caregiver burden that may negatively impact long-term patient care and QoL.
Asian Americans are the fastest growing racial group in the USA, but their health disparities are often overlooked. Although their needs for transplantable organs are substantial, they have the lowest rates of organ donation per million compared to other Americans by race. To better understand Asian Americans' disposition toward organ donation, a self-administered survey was developed based on formative data collection and guidance from a Community Advisory Board composed of Asian American stakeholders. The instrument was deployed online, and quota sampling based on the 2017 American Community Survey was used to achieve a sample representative (N = 899) of the Asian American population. Bivariate tests using logistic regression and the chi-square test of independence were performed. Over half (58.1%) of respondents were willing to be organ donors. A majority (81.8%) expressed a willingness to donate a family member's organs, but enthusiasm depended on the family member's donor wishes. Only 9.5% of respondents indicated that the decision to donate their organs was theirs alone to make; the remainder would involve at least one other family member. Other key sociodemographic associations were found. This study demonstrates both the diversity of Asian Americans but also the centrality of the family's role in making decisions about organ donation. Practice and research considerations for the field are also presented.
Asian , Tissue and Organ Procurement , Humans , Asian/psychology , Asian/statistics & numerical data , Family , Health Knowledge, Attitudes, Practice , Surveys and Questionnaires , Tissue and Organ Procurement/statistics & numerical data , Tissue Donors
Hundreds of thousands of individuals experience traumatic injuries each year. Some are mild to moderate in nature and patients experience full functional recovery and little change to their physical appearance. Others result in enduring, if not permanent, changes in physical functioning and appearance. Reconstructive plastic surgical procedures are viable treatments options for many patients who have experienced the spectrum of traumatic injuries. The goal of these procedures is to restore physical functioning and reduce the psychosocial burden of living with an appearance that may be viewed negatively by the patient or by others. Even after receipt of reconstructive procedures, many patients are left with residual disfigurement. In some, disability and disfigurement may be so profound that individuals are candidates for vascularized composite allotransplantation (VCA) procedures, i.e., the transplantation of a vascularized human body part containing multiple tissue types (skin, muscle, bone, nerves, and blood vessels) as an anatomical and/or structural unit. This narrative review paper summarizes the literature on the psychosocial burden experienced by those who have visible disfigurement. While many of these individuals experience stigma and discrimination, relatively few studies have employed a stigma framework to understand the psychosocial sequelea. This paper briefly addresses this framework. Last, particular focus is given to the psychosocial issues of individuals with particularly severe injuries who are potential candidates for VCA procedures.
Organ donation disparities among ethnic minorities have persisted for decades, especially among Asian Americans (AAs). AAs represent a substantial proportion of the national transplant waitlist but have historically had the lowest organ donation rate in the United States. Community based and culturally tailored (CBCT) interventions are needed to increase donor designation within AA communities. In collaboration with local AA organizations and representatives and national partners, we developed a culturally and linguistically tailored video using a family appeal to promote donor designation among AAs. The video was distributed on social media platforms in two stages from February 17 to September 17, 2021 and tracked Reaches, Impressions, Views, and Engagements as part of a larger evaluation. The results revealed higher social media activities and engagements on Facebook than on Instagram with and without paid advertisements, although the paid approach yielded 5 to 16 times higher viewer engagement. Over six months, the video reached 36,845 AAs and gained 53,308 Impressions, 20,139 Views, 2,455 Engagements, and 232 visits to the organ donation registration page. The findings indicated Facebook and CBCT approaches as effective communication strategies to potentially raise AAs' organ donation awareness, especially among AA females over 45 years of age. Implications and limitations are discussed.
Social Media , Tissue and Organ Procurement , Female , Humans , Asian , Tissue Donors , United States
Background: This mixed-methods study examined the general public's knowledge and attitudes about vascularized composite allografts. The availability of these anatomical gifts to treat individuals with severe disfiguring injuries relies largely on decisions made by family members. If vascularized composite allograft transplantation is to become more readily available, the knowledge and beliefs of the general public must be explored to ensure vascularized composite allograft donation approaches adequately support the donation decision-making process. Methods: We conducted six focus groups with 53 members of the general public, which were audio-recorded for accuracy and transcribed. Before each session, participants completed a brief survey assessing donation-related knowledge, attitudes, and beliefs. Analysis of qualitative data entailed the constant comparison method in the development and application of a schema for thematic coding. Descriptive statistics and Spearman's rank coefficient were used in the analysis of the quantitative data. Results: Respondents were most knowledgeable about solid organ donation and least knowledgeable about vascularized composite allograft donation. Six major themes emerged: (1) strong initial reactions toward vascularized composite allografts, (2) limited knowledge of and reservations about vascularized composite allografts, (3) risk versus reward in receiving a vascularized composite allograft, (4) information needed to authorize vascularized composite allograft donation, (5) attitudes toward donation, and (6) mistrust of the organ donation system. Conclusion: The general public has low levels of knowledge and high levels of hesitation about vascularized composite allograft donation and transplantation. Education campaigns to familiarize the general public with vascularized composite allografts and specialized training for donation professionals to support informed family decision-making about vascularized composite allograft donation may address these issues.
Introduction: Vascularized composite allotransplantation (VCA) donation relies on obtaining surrogate authorization. Yet, many donor professionals have limited experience discussing composite allograft donation. Using virtual and interactive elements, the eLearning program, Communicating Effectively about Donation for Vascularized Composite Allotransplantation (CEaD-VCA), was developed to enhance the quality of donor professionals' communication approach. Research Questions: We tested the effectiveness of the eLearning program in improving donor professionals' knowledge, preparedness, and confidence leading discussions with families. Design: Donor professionals who primarily obtain family authorization for solid organ and tissue donation were recruited from 2 regional Organ Procurement Organizations. The training was evaluated using a nonrandomized pre-post design. Participants completed an online survey with items assessing their knowledge, preparedness, and confidence for donation discussions. Pre- and post-training responses were compared using paired sample t-tests. Results: The sample included 42 donor professionals. The majority (71.4%) had at least 3 years of work experience, and over half (52.4%) had no experience discussing VCA donation with families. Post-training, significant increases in mean knowledge scores (6.4 pre to 7.0 post, P < 0.01) and mean self-reported preparation (6.6 pre to 7.9 post, P < 0.0001) were observed. There were significant increases in mean confidence scores for discussing face (6.2 pre to 7.9 post, P < 0.0001) and hand (6.2 pre to 8.0 post, P < 0.0001) transplants. Conclusion: The CEaD-VCA program was effective in increasing donor professionals' knowledge, preparation, and confidence when discussing donation, and holds potential for improving donor professional communication during donation discussions.
Computer-Assisted Instruction , Tissue and Organ Procurement , Vascularized Composite Allotransplantation , Health Personnel , Humans , Tissue Donors
BACKGROUND: Informal caregivers play a fundamental role in the care of hematological cancer patients, but less is known about how secondary caregivers are involved. We assessed the presence or absence of a secondary caregiver, the types of caregiving activities performed by primary and secondary caregivers, and examined whether the presence of a secondary caregiver was associated with primary caregiver characteristics and well-being over time. METHODS: A case series of hematological cancer patient-caregiver dyads (n = 171) were recruited from oncology clinics in Virginia and Pennsylvania and followed for 2 years. Multilevel models were developed to examine the associations between the presence of a secondary caregiver and the primary caregivers' well-being. RESULTS: Most (64.9%) primary caregivers reported having secondary caregivers. Multilevel models showed primary caregivers without help had higher baseline mental and physical health, but experienced deteriorating physical health over time, compared to supported primary caregivers. Supported primary caregivers reported improvements in mental health over time that was associated with improvements in physical health. CONCLUSIONS: Primary caregivers in good physical and mental health at the beginning of their caregiving journey but who have the least assistance from others may be at greatest risk for detrimental physical health effects long term. Attention to the arrangement of caregiving roles (i.e., who provides what care) over time is needed to ensure that caregivers remain healthy and well supported.
Caregivers , Neoplasms , Health Status , Humans , Mental Health , Neoplasms/therapy , Pennsylvania
OBJECTIVE: Previously we identified three distinct cancer communication concordance groups among cancer patient-caregiver dyads. This secondary analysis examined patient and caregiver reports of family functioning (cohesion and conflict) as associated with cancer communication concordance and assessed each as independent predictors of perceived caregiver burden among hematological cancer caregivers. METHODS: A case series of hematological cancer patient-caregiver dyads (n = 171) were recruited from oncology clinics in Virginia and Pennsylvania and followed for 2 years. Using the previously identified communication groups this analysis prospectively examines patient and caregiver perceptions of family cohesion and conflict and the association with burden over time. RESULTS: Caregiver burden decreased over time. Caregiver, but not patient perceptions of family cohesion decreased over time; decreased cohesion and increased conflict was associated with greater cancer communication discordance. CONCLUSIONS: This work lends further support to the use of cancer communication congruence typologies for identifying potentially vulnerable dyads. Discordant cancer communication and declining caregiver perceptions of family cohesion may represent opportunities to intervene using family focused supportive services. PRACTICE IMPLICATIONS: Only caregiver perceptions of family functioning were associated with burden therefore identifying and supporting those caregivers with worsening communication and family function is important.
Hematologic Neoplasms , Neoplasms , Caregiver Burden , Caregivers , Communication , Family , Humans , Neoplasms/therapy
BACKGROUND: Emerging adults with early psychosis demonstrate high rates of service disengagement from critical early intervention services. Decision support interventions and peer support have both been shown to enhance service engagement but are understudied in this population. The purposes of this article are to describe the development of a novel peer-delivered decision coaching intervention for this population and to report plans for a pilot study designed to gather preliminary data about its feasibility, acceptability, and potential impact. METHODS: The intervention was developed based on formative qualitative data and in collaboration with a diverse team of researchers, key stakeholders, and expert consultants. The pilot trial will utilize a single-group (N = 20), pre-post, convergent mixed-methods design to explore whether and how the intervention addresses decision-making needs (the primary intervention target). The impact of the intervention on secondary outcomes (e.g., engagement in the program) will also be assessed. Additionally, through observation and feedback from the peer decision coach and study participants, we will evaluate the feasibility of research and intervention procedures, and the acceptability of information and support from the peer decision coach. DISCUSSION: The peer-delivered decision coaching intervention holds promise for assisting young people with making informed and values-consistent decisions about their care, and potentially enhancing service engagement within this traditionally difficult-to-engage population. If the intervention demonstrates feasibility and acceptability, and pilot data show its potential for improving treatment decision-making, our work will also lay the foundation for a new evidence base regarding roles for peer specialists on early intervention teams. TRIAL REGISTRATION: This trial was registered with ClinicalTrials.gov (Identifier: NCT04532034 ) on 28 August 2020 as Temple University Protocol Record 261047, Facilitating Engagement in Evidence-Based Treatment for Early Psychosis.
