Family Members Of Individuals Research Articles

Domains and dimensions of family quality of life among families with a member with neurodegenerative diseases

AbstractBackgroundFamily quality of life (FQoL) is a recent construct to be applied in neurodegenerative diseases (NDs). In this context, there is interest in advancing in the measurement of the FQOL as a first step to determine the supports that families need to perceive quality of life. The aim of this study was to test the validity of the Family Quality of Life Survey‐ Dementia (DiZazzo‐Miller & Samuel, 2011) in order to assess FQoL among family members of individuals with NDs who live in the cross‐border area of Spain‐Portugal.MethodThree hundred family members of people with NDs completed the FQoLS‐NDs Survey (Badia et al., 2020). The mean age was 62.4 years (SD = 13.34). Most were males (70%), married (79.7%), not working (64.7%), with low income (66.1%), and had elementary/high studies (73.1%). The majority were the spouse/partner (40.9%) or son/daughter (51.7%) of the care‐recipient and played the role of primary caregiver (93.3%). Sixty percent of care‐recipients were females (M= 79.3 years; SD= 11.7). Sixty two percent presented dementia, 30.4 % Parkinson´s disease, and 7.6% multiple sclerosis. Construct validity was tested by correlation analysis to examine associations between domain level outcomes (i.e., health, financial well‐being, family relationships, support from others, support from services, influence of values, careers, leisure and recreation, and community integration) and global FQoL. Likewise, t‐tests were used to compare the outcome measures (attainment and satisfaction) within each of the nine family domains.ResultGlobal attainment and satisfaction with FQOL‐NDs was found to be significantly correlated with composite attainment and satisfaction from nine domains (r=.489, p<.001 and r=.536, p<.001, respectively). Attainment and satisfaction were positively correlated within the nine domains (ranging from r=.83 to r=‐.69, p<.001). There was a significant difference between domain‐level attainment and satisfaction ratings [t(299)=12.28, p<.001, h2=.34]: the mean level of satisfaction experienced (M=3.71, SD=0.49) was significantly higher than that of attainment (M=3.52, SD=0.49).ConclusionThis study demonstrates that FQOL‐NDs has good validity properties and it is a useful tool to establish FQOL profiles for family caregivers of people with NDs.

ИСКУСТВА ЛГБТ ОСОБА У МЕЂУЉУДСКИМ ОДНОСИМА И СФЕРИ РАДА У СРБИЈИ

Personal experience of LGBT individuals in interpersonal relations and in the professional sphere has been defined based on the results of research obtained by focus-group interviews. The research has been conducted on the sample of 6 participants, i.e., 3 male and 3 female members of LGBT population. The paper focuses on the experience of LGTB individuals in interpersonal relations and in the professional sphere and confirms the results of extensive research which indicate that there is a much higher level of tolerance to female homosexuality than tolerance to male homosexuality. Research results emphasize that gay men are faced with more serious concerns, both in interpersonal relations and in the professional sphere than lesbians. As a rule, all research participants have experienced disapproval and condemnation from their parents after revealing their sexual orientation. Even though family members of LGBT individuals have accepted their sexuality over time, their mutual relations have inevitably changed. Participants’ contacts with family members have been significantly reduced, as they do not share their feelings or confide in the members of their families as they used to. Additionally, after coming out about their sexuality, gay men have suffered insults and aversion from their friends or faced numerous difficulties when trying to make new friends. On the other hand, lesbian participants in the research have not seen their sexual orientation as an obstacle to making new friends or interacting with their old friends and acquaintances.

Expectations and experiences of family members regarding the rehabilitation of relatives with schizophrenia in South West Nigeria.

Schizophrenia is a major mental illness attributed to demonic influences in sub-Saharan Africa. In Nigeria specifically, schizophrenia is seen as an illness caused by the god of the sun, and it is believed that the condition of individuals suffering this illness worsens during the summer. This and many other beliefs result in people thinking that those with schizophrenia are dangerous and that it is contagious, resulting in avoidance and leaving their care to the family alone. Most times, families seek medical help after chronicity has set in. In many instances, the family unit is the only source of support for people with schizophrenia. The responsibility of care and stigma attributed to schizophrenia can be so enormous that family members feel overburdened; however, in situations where support services are available to help individuals return to their premorbid state or that of independence, there may be a reduction in the care burden faced by families. One such strategy that helps individuals with mental illness live independent lives while reducing their family burden is rehabilitation; this, however, is misconstrued in South West Nigeria. This study assesses the expectations and experiences of family members of individuals living with schizophrenia and undergoing psychiatric rehabilitation in South West Nigerian mental health facilities using a qualitative approach through individual interviews of 21 participants (individuals closely related to someone with schizophrenia and documented as the next of kin). The principal researcher conducted the interviews and both researchers analysed the data using the content analysis approach through NVivo version 11. This study reveals that families of individuals with schizophrenia regard them as a burden, and an ideal rehabilitation of such individuals will give them-both the individual and themselves-complete independence. The findings also reveal that family members believe rehabilitation services in research settings lack material resources and human expertise. This study concludes that family members are not satisfied with the rehabilitation approach and desire home- and community-based commitment of institutions with the rehabilitation of their relatives with schizophrenia. Therefore, this study recommends capacity building/continuous development of professionals and appraisal of clients' support services in terms of finance and empowerment. As such, rehabilitation should achieve the highest priority aftercare with clients, and the family should be educated on exactly what it entails.

P.137 A qualitative study of families’ experiences with medical assistance in dying (MAiD) in Nova Scotia

Background: MAiD became legal in Canada in 2015, with Bill C-14 delineating eligibility criteria and access. Previous research found families are intimately involved with decision-making, with conflicting perspectives on how they cope. Our study sought to learn about the experiences of family members, and determine what supports might be beneficial to improve MAiD delivery and aftercare. Methods: We conducted hour-long semi-structured interviews with 20 family members of individuals who had MAiD. Interviews took place by telephone or virtually via MS Teams, and transcripts were analyzed using an iterative coding process and thematic analysis. Results: Prominent themes emphasized the importance of respecting autonomy, decision-making, and allowing people to regain a sense of control, particularly with so much taken away. The death itself was described as peaceful. Interviewees were overwhelmingly filled with relief and gratitude for being able to respect the individual’s wishes. Interviewees spoke of importance of support for themselves, and the desire to build a network of individuals with similar experiences; to share their stories, grieve together, and support the next generation. Conclusions: These results will help improve MAiD delivery and aftercare in Nova Scotia, by informing, developing and enabling access to resources for individuals who accompany a family member on their end-of-life journey.

Pendidikan Kesehatan Secara Virtual: Efektifkah Sebagai Upaya Pencegahan Terjadinya Penundaan Dalam Mengakses Pelayanan Kesehatan Ketika Mengalami Sindrom Koroner Akut

Acute Coronary Syndrome (ACS) is the main cause of sudden death in a person. Sudden death due to ACS can be prevented if individuals who show symptoms of ACS immediately obtain health services. If the family (caregiver) has good knowledge about ACS, the delay can be avoided. The method of implementing health education that is safe to use during the COVID-19 pandemic is to be carried out virtually. The purpose of this study was to examine the effectiveness of virtual health education in increasing family knowledge about ACS. The research was carried out in the work area of the Andalas Public Health Center, Padang City. The type of research used is quantitative using a quasi-experimental non-equivalent control group design. The sample in this study were family members of individuals who are at high risk of experiencing ACS totaling 266 people consisting of 133 people in the case group and 133 others in the control group. The sample was selected using purposive sampling technique. Respondents' understanding of the material after health education, both in the case group and the control group, was evaluated using an instrument in the form of a questionnaire consisting of 15 questions. The data obtained from the questionnaire were analyzed statistically using the SPSS program. The results showed that virtual health education had a positive effect on respondents' knowledge of ACS in the case group compared to the control group. The results showed that there was a significant effect of health education on knowledge (p value = 0.000) of respondents in the case group. However, there was no effect in the control group (p value 0,181). The health promotion team should continue to provide health education to the public about ACS during COVID-19 pandemic using virtual media. Thus, health promotion programs can continue to be carried out without having to worry about the spread of the corona virus.

Psychometric Properties of the Korean Family Reported Outcome Measure for Family Members of Patients With Acquired Brain Injury.

BACKGROUND: Acquired brain injury (ABI) affects not only survivors but also their family members' quality of life in various ways. The Family Reported Outcome Measure (FROM-16), a self-reported instrument, has been developed to evaluate the impact of diseases on the lives of family members of patients. This study aimed to assess the reliability and validity of the Korean FROM-16 for family members of individuals with ABI. METHODS: A total of 200 family members of patients with ABI in South Korea participated in this study. Internal consistency was assessed using Cronbach α. To establish the validity, we evaluated the semantic equivalence, content, known-group, conduct, concurrent, and convergent validity of the Korean FROM-16. For exploratory factor analysis, common factor analysis with oblique rotation, parallel analysis, an eigenvalue greater than 1.0, and a scree plot were used. RESULTS: Exploratory factor analysis revealed 2 factors for the 16 items, which explained 67.4% of the total variance. Concurrent validity was established by comparison with the Korean World Health Organization Quality of Life Scale Brief (r = -0.57), and regarding the convergent validity, the Korean FROM-16 score positively correlated with the Korean Neurobehavioral Functioning Inventory. Known-group validity was confirmed by showing that family members with advanced age, the burden of caring, and insufficient income, as well as spouses, had a statistically higher score in the Korean FROM-16. Cronbach α was .92, indicating high internal consistency reliability. CONCLUSION: The Korean FROM-16 is a valid and reliable instrument for evaluating the impact of diseases on family members of individuals with ABI in South Korea.

Engaging Social Connections to Promote Physical Activity in Individuals with Spinal Cord Injury

<h3>Research Objectives</h3> To identify the individual and interpersonal needs for a just-in-time adaptive intervention (JITAI) system that engages individuals with spinal cord injury (SCI) and their friends/family to perform physical activity. <h3>Design</h3> User-needs survey. A participatory design process was utilized. Five 90-minute virtual focus group sessions were conducted using semi-structured interviews to assess user needs and identify key features to implement in a functional prototype. In later phases of this study, virtual prototypes will be tested. <h3>Setting</h3> Community. <h3>Participants</h3> 3 participant pairs (individuals with SCI and their family member) between the ages of 28-57 were randomly recruited and selected. <h3>Interventions</h3> Not applicable. <h3>Main Outcome Measures</h3> Due to the qualitative nature of this study, our outcomes were themes that emerged from participants regarding needs for communication and motivation to increase physical activity levels. <h3>Results</h3> Results indicated themes that engage friends and family members of individuals with SCI including creating and tracking written goals, scheduling and planning group activities to reduce barriers, and providing prompts to improve communication about physical activity. Structured templates for message creation and public message boards for individuals with SCI and their friends/family are features that may address these themes by facilitating meaningful communication through suggestions based on shared activity levels or goals and connecting individuals with SCI to a supportive network of individuals with the overlapping goal of increasing physical activity. <h3>Conclusions</h3> Individuals with SCI must overcome significant physical, psychosocial and environmental barriers to participate in physical activity. Incorporating social engagement in modified JITAI systems may facilitate context-based and person-specific recommendations and motivation to potentially increase physical activity levels and promote sustained health and wellness in individuals with SCI. <h3>Author(s) Disclosures</h3> The authors declare no competing interests.

Workplace Support for Employees in Recovery From Opioid Use: Stakeholder Perspectives.

The dual challenges of COVID-19 and the opioid epidemic have heightened the need of Maryland workplaces for accessible resources and supports. This paper describes efforts of the Workplace PROSPER (Partnering to Reduce Opioid Stigma and Support Employment in Recovery) project team to explore opioid-related state employment needs from Key Stakeholder perspectives. Discussion revealed significant overlap between the needs identified by stakeholders and pre-existing recovery friendly initiatives in other states. However, this convening identified the need for increased training of medical professionals in communicating about work capacity and safety as well as for resources to support family members of individuals with Opioid Use Disorder and model programs for hiring individuals in recovery. Next steps include the creation and dissemination of a survey to obtain a broader base of feedback and the development of a robust set of online recovery resources for Maryland employers and employees.

Protocol for a multi-phase, mixed methods study to develop and evaluate culturally adapted CBT to improve community mental health services for Canadians of south Asian origin

BackgroundCanadians of South Asian (SA) origin comprise the largest racialized group in Canada, representing 25.6% of what Statistics Canada terms “visible minority populations”. South Asian Canadians are disproportionately impacted by the social determinants of health, and this can result in high rates of mood and anxiety disorders. These factors can negatively impact mental health and decrease access to care, thereby increasing mental health inequities. Cognitive Behavioural Therapy (CBT) in its current form is not suitable for persons from the non-western cultural backgrounds. Culturally adapted Cognitive Behavioural Therapy (CaCBT) is an evidence-based practice. CaCBT is more effective than standard CBT and can reduce dropouts from therapy compared with standard CBT. Thus, CaCBT can increase access to mental health services and improve outcomes for immigrant, refugee and ethno-cultural and racialized populations. Adapting CBT for growing SA populations in Canada will ensure equitable access to effective and culturally appropriate interventions.MethodsThe primary aim of the study is to develop and evaluate CaCBT for Canadian South Asian persons with depression and anxiety and to gather data from stakeholders to develop guidelines to culturally adapt CBT. This mixed methods study will use three phases: (1) cultural adaptation of CBT, (2) pilot feasibility of CaCBT and (3) implementation and evaluation of CaCBT. Phase 1 will use purposive sampling to recruit individuals from four different groups: (1) SA patients with depression and anxiety, (b) caregivers and family members of individuals affected by anxiety and depression, (c) mental health professionals and (d) SA community opinion leaders. Semi-structured interviews will be conducted virtually and analysis of interviews will be informed by an ethnographic approach. Phase 2 will pilot test the newly developed CaCBT for feasibility, acceptability and effectiveness via quantitative methodology and a randomized controlled trial, including an economic analysis. Phase 3 will recruit therapists to train and evaluate them in the new CaCBT.DiscussionThe outcome of this trial will benefit health services in Canada, in terms of helping to reduce the burden of depression and anxiety and provide better care for South Asians. We expect the results to help guide the development of better services and tailor existing services to the needs of other vulnerable groups.Trial registrationClinicalTrials.gov NCT04010890. Registered on July 8, 2019

Grief, a Wedding Veil, and Bureaucratic Persecution: Becoming Refugee-adjacent in the Aftermath of Tragedy, 1941-1946

ABSTRACT The histories of refugees and forced displacement do not often consider the impact of grief and loss upon the family members of such individuals. This essay places the story of one such family member, a young woman who lost her parents, brother, and her fiancé on the sinking of a ship filled with refugees during the Second World War, as the focal point of an exploration of grief, material possessions, and migration, amidst the bureaucratic mechanisms of empire. The story of Doris, a migrant to Mandate Palestine in 1941 and then a repatriate to Great Britain the following year, highlights the ways in which elements of refugeedom intersected with colonialism and empire and restrictions on Jewish migration. I use the fragmentary nature of Doris’s archival record to understand her as a ‘refugee-adjacent’ individual who tried to negotiate hurdles, constraints, and dismissive attitudes of colonial authorities and all the while deal with her own loss and its consequences. Of significance to this historical context is that the grief of refugees and their family members left behind was often unrecognised by colonial and state authorities.

Supporting Those Who Love the Loathed: Trauma-Informed Support Groups for Family Members of Registered Sex Offenders

Social workers are typically empathic, but it can be challenging to offer compassionate care to those who harmed others and, by extension, to the people who love them. This article describes a trauma-informed support group intervention for family members of individuals required to register as sex offenders (RSOs). We begin with a brief overview of this unique population, review the empirical research exploring family members’ needs and the services available to them, and introduce the trauma-informed framework for our support group. We will then describe the group’s development and dynamics. Finally, we will highlight trauma-informed practice skills and tools for facilitating effective and empowering support services with this hidden and stigmatized population.

Testing a Model of Resilience in Family Members of Relatives with Traumatic Brain Injury vs Spinal Cord Injury: Multigroup Analysis

ObjectiveTo test a model comprising explanatory (neurologic impairment, coping, personality) and mediating (resilience, self-efficacy, hope, social support) variables on psychological adjustment and burden among family caregivers of individuals with traumatic brain injury (TBI) vs spinal cord injury (SCI). DesignStructural equation modeling with multigroup analysis. SettingSix rehabilitation centers across New South Wales and Queensland, Australia. ParticipantsA total of 181 family members (N=181; 131 TBI, 50 SCI). InterventionsNot applicable. Main Outcome MeasuresConnor-Davidson Resilience Scale, Eysenck Personality Questionnaire, Ways of Coping Questionnaire, General Self-Efficacy Scale, Herth Hope Scale, Medical Outcome Study Social Support Survey; and 4 measures of psychological adjustment including: Caregiver Burden Scale, Medical Outcomes Survey Short Form-36 (SF-36), General Health Questionnaire-28, and Positive and Negative Affect Scale. ResultsThe model for the aggregated sample demonstrated a very good model fit (χ2=47.42, df=39, ρ=0.167, normed fit index=.962, incremental fit index=.993, Tucker-Lewis index=.985, comparative fit index=.993, root-mean-squared error of approximation=.035). Multi-group analysis found significant commonalities in the pattern of relationships among variables across the 2 groups. In the only differences found, neuroticism was significantly more influential on burden in family members supporting individuals with TBI than family members of individuals with SCI. Furthermore, problem-focused coping was statistically more influential on positive affect in family members of individuals with TBI when compared with family members of individuals with SCI. ConclusionsThe study found significant similarities in the patterns of resilience and psychological adjustment among family caregivers of individuals with TBI and SCI.

Informal caregiver experiences at the end-of-life of individuals living with dementia with Lewy bodies: An interview study

Individuals with dementia with Lewy bodies (DLB) commonly die from dementia-related causes, but little is known regarding caregiver experiences during the end-of-life period in DLB. This reflects a critical knowledge gap given the high frequency of informal caregiving for individuals with dementia, high caregiver burden in DLB, and the fact that most individuals with DLB die from this disease. Investigators conducted telephone interviews with family members of individuals who died with DLB in the last 5years. Investigators used a qualitative descriptive approach to analyze interview transcripts. Participants included 15 children, 13 spouses, and 2 other family members. Interviews averaged 31min. Major themes included caregivers as the main drivers of care for individuals with DLB throughout the disease course and at the end of life, the impact of DLB features (e.g., fluctuations, hallucinations, and delusions) on end-of-life experiences, experiences relating to the caregiving role, death and post-death experiences, and supports employed by caregivers in the end-of-life period. End-of-life experiences for caregivers of individuals with DLB built on the accumulated burden of the disease course, where caregivers were often responsible for driving DLB care-from making the diagnosis to educating healthcare professionals and double-checking medical decisions. While some end-of-life experiences were consistent with those described in dementia palliative care more generally (e.g., financial stresses, poor sleep, being overwhelmed, and needing increased education and support), many DLB features specifically affected end-of-life caregiver experiences, such as the presence of delusions. Improving caregiver experiences at the end of life in DLB will require improved diagnosis and care for individuals with DLB throughout the disease course and also better strategies for treating behavioral symptoms. More research is needed regarding drivers of quality end-of-life experiences for individuals with DLB and their families and how drivers and strategies may differ between dementias.

A qualitative content analysis of an online support forum for family members of individuals with reported histories of sexual offences

Few studies have examined the impact of sexual offences on non-offending family members. Using thematic content analysis of posts on a relevant, anonymous online support community website, the current study identified the experiences and needs of family members following a sexual offence. Findings indicate that collateral consequences of legal restrictions, coupled with stigma, result in enduring emotional, social, and practical difficulties for non-offending family members. In addition, family members highlighted an important role in providing practical and emotional support for alleged perpetrators managing offence-related challenges. Uncertainty surrounding registration requirements serves as a barrier to maintaining and accessing housing, planning key life events, and helping family members comply with parole requirements. Overall, findings serve to identify key challenges confronting non-offending family members and inform the design of services to support positive relationships associated with reduced re-offending.

Research on the collaboration between educators and medical practitioners of children with 22q11.2 deletion syndrome at schools

22q11.2 deletion syndrome (22q11.2 DS), also known as DiGeorge syndrome, or Velocardiofacial syndrome, is a disorder caused by a small amount of genetic material (DNA) missing from one of the chromosomes that are in each cell of our bodies. That tiny missing piece of the 22nd chromosome can cause a wide variety of problems that present from birth, such as defects in the heart and other organs, intellectual disabilities and learning difficulties, developmental delays and neuorodevelopmental disorders in some people, while others can go through life without realising they have it. Family members of individuals with the disorder are also likely to be affected, which is why efforts are being made to assist the families of people with 22q11.2 DS. Associate Professor Chiaki Kitamura, Faculty of Nursing, Seisen Jogakuin College, Japan, is a researcher doing just this. In particular, she wants to ensure that individuals with the disorder receive educational support from an early stage and that their family, caregivers and siblings learn about and understand 22q11.2 DS. In their project, Kitamura and her team are exploring the collaboration between educators and medical practitioners of children with 22q11.2 DS at schools. Kitamura wishes to identify a means of explaining the condition in a simple and effective manner and hopes this knowledge will improve the lives of patients and their families. As such, the team has developed a learning support guide to be used by educators and the families of 22q11.2 DS patients. The goal of the guide is to enhance the cooperation between medical care staff and educators. The researchers will disseminate the guide and facilitate understanding of the diversity of individuals with 22q11.2 DS, thereby promoting medical education.

Transcultural adaptation and psychometric properties of Family Quality of Life Survey for caregivers of people with neurodegenerative disease: a study of Spanish families who live in the rural Spain\u2013Portugal cross-border

BackgroundNeurodegenerative diseases (NDs) are one of the main causes of disability and dependence that have a great impact both on the quality of life of people with disabilities and their families. A majority of people with NDs receive care and support from the family, but there is no tool in Spain with which to measure whole-family QOL. The aim of this study was the translation, cultural adaptation, and validation of the FQOLS–Dementia into Spanish to assess FQOL among family members of individuals with NDs who live in the Spain–Portugal cross-border area.MethodThe Spanish version was translated and adapted following the international guidelines for cross-cultural adaptation tests. A sample of 300 family caregivers was interviewed, applying an adapted version of the Family Quality Survey (FQOLS–Dementia). Confirmatory factor analysis was performed to validate the factor structure, and convergent validity was examined with Pearson’s correlation coefficients of the global FQOL with the domains. Internal consistency reliability was determined using Cronbach’s alpha.ResultsThe domain structure of the FQOLS–ND showed a good fit. In the convergent validity, it was found that the total score and the subscale domain scores were associated with the global FQOL score, except for the Values domain. Internal consistency of nine domain subscales was strong (α = 0.80 to 0.91), and excellent for the total FQOL (α = 0.85) and the global FQOL (α = 0.87).ConclusionThe FQOLS–ND presented good validity and reliability in caregiver families with individuals with ND, so its application shows its usefulness in detecting areas of improvement and intervention strategies for FQOL in the Spain–Portugal cross-border area.

Complicated Grief, Depression, Health and Attachment Style in First Degree Relatives of Individuals with a Chronic Psychotic Disorders.

Complicated grief (CG) is a form of unrelenting grief after the death of a loved one. However, family members of individuals who suffer from Schizophrenia, Schizoaffective disorders and Bipolar disorder may experience symptoms of CG even though their loved one is still alive. The present study assessed CG and risk factors for CG in first degree relatives of individuals with severe chronic mental illness. The incidence of CG was examined in 78 parents, siblings, adult children and spouses recruited through organizations and social media that provide support services for individuals suffering from mental illness and their families. High rates of CG (39.7%) were found in this group. CG was associated with a higher prevalence of posttraumatic and depression symptoms and poorer physical health. These findings may contribute to heightening therapists' awareness of the importance of assessing, acknowledging and resolving CG in the family members of patients with chronic psychotic disorders.

Incorporating Cascade Effects of Genetic Testing in Economic Evaluation: A Scoping Review of Methodological Challenges.

Cascade genetic testing is indicated for family members of individuals testing positive on a genetic test, and is particularly relevant for child health because of their vulnerability and the long-term health and economic implications. Cascade testing has patient- and health system-level implications; however cascade costs and health effects are not routinely considered in economic evaluation. The methodological challenges associated with incorporating cascade effects in economic evaluation require examination. The purpose of this scoping review was to identify published economic evaluations that considered cascade genetic testing. Citation databases were searched for English-language economic evaluations reporting on cascade genetic testing. Nineteen publications were included. In four, genetic testing was used to identify new index patients—cascade effects were also considered; thirteen assessed cascade genetic testing strategies for the identification of at-risk relatives; and two calculated the costs of cascade genetic testing as a secondary objective. Methodological challenges associated with incorporating cascade effects in economic evaluation are related to study design, costing, measurement and valuation of health outcomes, and modeling. As health economic studies may currently be underestimating both the cost and health benefits attributable to genetic technologies through omission of cascade effects, development of methods to address these difficulties is required.

Abstract PS8-28: Outreach to families with known BRCA mutation through the reach (research, education, and awareness of cancer family history) registry

Abstract Background: Women with germline mutations in the BRCA1 or BRCA2 (BRCA1/2) genes have a significantly increased lifetime risk of developing breast and ovarian cancers. Since approximately 5-10% of breast and ovarian cancer is due to a hereditary predisposition, identification of a BRCA1/2 mutation has significant implications for early cancer detection, prevention, and cancer treatment options. Additionally, identifying women with a BRCA1/2 mutation allows for targeted, family-based cancer screening and prevention in their at- risk relatives. Any first degree relative (parents, siblings, and children) of an individual identified to carry a BRCA1/2 mutation has a 50% chance of carrying the same mutation. However, little is known if and how genetic test results are conveyed to family members and what they do with this information. UT MD Anderson Cancer Center initiated a project REACH (Research, Education and Awareness of Cancer Family History) that aims to maximize the identification of hereditary breast and ovarian cancer in at-risk family members of individuals identified to have a BRCA1/2 mutation (pathogenic variant or variant of uncertain significance). Here we present the infrastructure and initial feasibility of this prospective initiative. Methods: This study is conducted through the University of Texas MD Anderson Cancer Center’s Women Cancer Moonshot and Clinical Cancer Genetics program at MD Anderson. The probands consists of BRCA1/2 positive triple negative breast cancer (TNBC) patients that underwent universal BRCA testing between 2014-2019 on a preceding Universal BRCA Testing registry (published elsewhere) and BRCA1/2 positive patients that presented to the breast center clinic. Probands are consented for a prospective family outreach protocol (REACH registry) where they give us permission to contact their relatives. The REACH registry includes questionnaires (related to family communication, genetic testing, cancer risk reduction, and surgical choices), optional yearly follow ups, and active outreach to at-risk family members using an innovative information-technology platform and a variety of web-based patient education tools. Results: Since 2014 a total of 122 probands with TNBC and a BRCA germline mutation were enrolled into the REACH registry and of those 92 (75.4%) completed the baseline questionnaire. Of the 62 second year follow up questionnaires sent, 42 (67.8%) were completed. Before pausing study activities in 2017 (due to funding), of the 18 third year follow up questionnaires sent, 5 (27%) were completed. We were able to enroll 38 at-risk family members of TNBC probands into the registry. 31 (81%) of the family members completed the baseline questionnaire. Of the 26 second year follow up questionnaires sent to family members, 17 (65.4%) were completed. Before a pause in study, of the 10 year three questionnaires sent, 7 (70%) were completed. The study restarted in 2019, recruitment, questionnaires and web-based education are on-going. Conclusion: We have shown that it is feasible to develop a practical infrastructure that allows us to continue communication with our proband and to connect with their at-risk relatives to further communicate with them issues related to genetic testing, interpretation, implications and screening. The next phase will include to offer virtual genetic counseling and testing family members. Citation Format: Sierra Green, Meagan Kaulfus, Angelica Gutierrez Barrera, Karen Lu, Banu Arun. Outreach to families with known BRCA mutation through the reach (research, education, and awareness of cancer family history) registry [abstract]. In: Proceedings of the 2020 San Antonio Breast Cancer Virtual Symposium; 2020 Dec 8-11; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2021;81(4 Suppl):Abstract nr PS8-28.

Support4Families: A Proposed Intervention Model to Support Families of Individuals Returning Home From Incarceration

Leaving incarceration and returning home (i.e., reentry) affects individuals and their families; 90% of individuals releasing from prison rely on family for critical reentry supports. Although positive family support during this period is empirically linked to an individual’s success, providing support can place a substantial emotional, social, and fiscal toll on family units. Without intervention, positive family support may deteriorate or become negative. This article presents the theoretical and empirical grounding for creating family-focused reentry interventions which target the family members of individuals leaving incarceration to improve the outcomes of both the re-entering individual and the family unit. This article then proposes a family skills training intervention Support4Families, and describes the evidence-driven intervention components of Support4Families. The intervention was developed using preliminary social support research and feedback from family members of formerly incarcerated individuals. Current testing and future research agenda of family support interventions in reentry are also explored.