Family Members Of Individuals Research Articles

The burden of traumatic brain injury on caregivers: exploring the predictive factors in a multi-centric study

BackgroundTraumatic brain injury (TBI) is a significant cause of mortality and morbidity worldwide. With survivors often exhibiting degrees of function loss, a significant burden is exerted on their caregivers. The purpose of this study was to explore the predictive factors of caregiver burden among caregivers of patients with TBI.MethodsSixty-eight family members of individuals with a TBI who had been admitted to three hospitals were assessed in terms of caregiver burden using the Zarit Burden Interview. The association of caregiver burden with patients’ baseline cognitive function according to the Montreal Cognitive Assessment (MoCA) test, as well as caregivers’ sociodemographic characteristics, were evaluated using multiple regression analysis.ResultsBased on the multiple regression model, the MoCA score of the patients (std β=-0.442, p < 0.001), duration of caregiving (std β = 0.228, p = 0.044), and higher education of the caregivers (std β = 0.229, p = 0.038) were significant predictors of caregiver burden.ConclusionOverall, our findings highlight the importance of taking caregivers’ psychosocial needs into account. Long-term caregivers of TBI patients with cognitive impairment should be viewed as vulnerable individuals who could benefit from psychosocial intervention programs, to improve their well-being and enabling them to enrich their care of the TBI patient.

The lived experience of people affected by cancer: A global cross-sectional survey protocol.

A diagnosis of cancer impacts the person's physical and mental health and the psychosocial and financial health of their caregivers. While data on the experience of living with cancer is available, there is a dearth of data from persons in low- and middle-income countries (LMICs). The perspectives of other impacted individuals also remain understudied (e.g., bereaved family members), as well as the impact on survivors and their families over time. The objective of this study is to describe the psychosocial and financial impact of cancer on people diagnosed with cancer as a child, adolescent or adult, their families/caregivers, and the family members of those who have died from cancer, in high-income countries (HICs) and LMICs. This study is an observational, descriptive, quantitative study. Data will be collected anonymously via a digital online cross-sectional survey distributed globally by the World Health Organization (WHO) via the LimeSurvey software. Participants will include (a) adults aged 18+ who have been diagnosed with cancer at any age, who are currently undergoing cancer treatment or who have completed cancer treatment; (b) adult family members of individuals of any age with a cancer diagnosis, who are currently undergoing cancer treatment or who have completed cancer treatment; and (c) bereaved family members. Participants will be anonymously recruited via convenience and snowball sampling through networks of organisations related to cancer. Survey results will be analysed quantitatively per respondent group, per time from diagnosis, per disease and country. Results will be disseminated in peer-reviewed journals and at scientific conferences; a summary of results will be available on the WHO website. This study will suggest public health interventions and policy responses to support people affected by cancer and may also lead to subsequent research focusing on the needs of people affected by cancer.

Risk of major adverse liver outcomes among first-degree relatives of individuals with MASLD.

Previous studies have suggested an increased risk of major adverse liver outcomes (MALO) in relatives of patients with metabolic dysfunction-associated steatotic liver disease (MASLD). However, granular and longitudinal evidence is lacking on the future risk of MALO among family members of individuals with MASLD. We identified 3526 first-degree relatives (FDRs) and 11 079 general population comparators to 1328 patients with MASLD diagnosed between 1974 and 2021, with detailed clinical data, including liver histology in 71% of patients. MALO was defined through diagnostic coding for cirrhosis or its complications. Cox regression models were used to estimate adjusted hazard ratios (aHRs) for MALO among FDRs compared to general population comparators. Cumulative incidence accounting for competing risks was calculated. During a median follow-up of 13.4 years, there were 65 (2%, 1.12/1000 person-years) and 225 (2%, 1.26/1000 person-years) MALO events in FDRs and general population comparators respectively. After adjusting for demographic factors and comorbidities, FDRs were at no increased risk of MALO (aHR = 0.99, 95% CI: 0.74-1.33). Increased relative rates of MALOs were, however, observed in some subgroups, including parents, although absolute risk estimates were low and comparable to the general population. FDRs of patients with MASLD did not have a higher rate of incident MALO than the general population. Since the absolute risk of MALO in relatives of patients with MASLD was low, these results do not support systematic screening of MASLD-related fibrosis in relatives of patients with MASLD.

Evaluation of Informative Content on Cerebral Palsy in the Era of Artificial Intelligence: The Value of ChatGPT

Aims In addition to the popular search engines on the Internet, ChatGPT may provide accurate and reliable health information. The aim of this study was to examine whether ChatGPT's responses to frequently asked questions concerning cerebral palsy (CP) by families were reliable and useful. Methods Google trends were used to find the most frequently searched keywords for CP. Five independent physiatrists assessed ChatGPT responses to 10 questions. Seven-point Likert-type scales were used to rate information reliability and usefulness based on whether the answer can be validated and is understandable. Results The median ratings for reliability of information for each question varied from 2 (very unsafe) to 5 (relatively very reliable). The median rating was 4 (reliable) for four questions. The median ratings for usefulness of information varied from 2 (very little useful) to 5 (moderately useful). The median rating was 4 (partly useful) for seven questions. Conclusion Although ChatGPT appears promising as an additional tool for informing family members of individuals with CP about medical information, it should be emphasized that both consumers and health care providers should be aware of the limitations of artificial intelligence-generated information.

Family members’ experiences of everyday caregiving for a family member living with Parkinson’s disease: a qualitative thematic analysis study

BackgroundIn the daily life of individuals living with Parkinson's disease, their loved ones are crucial. Adapting family members to the patient's condition, support in providing care, and psychosocial adaptations is essential.AimTo explore family members' perception of everyday caregiving for a family member living with Parkinson's disease and to describe their role in the care and everyday life.MethodsIn a descriptive, qualitative thematic analysis study, semi-structured interviews were conducted with ten people between the ages of 20 and 70, the closest family members of people living with Parkinson's disease. The analysis of the collected data was carried out using thematic analysis.ResultsWe generated the main theme: "Living with a family member with Parkinson’s disease", with associated secondary-level sub-themes: “Response”, “Change”, “Care”, and “Support”. Family members of individuals living with Parkinson's disease frequently encounter similar life situations. The most notable transformation in their daily lives primarily revolves around adapting to various activities.ConclusionsFamily members are the ones who most often take on the role of caregiver and provide help to their loved ones. Many of them accept the disease as a part of everyday life and learn to live with it. It is of fundamental importance that we offer family members the necessary support, knowledge, and involvement in holistic treatment and care.

Conducting family meetings on families with dementia: An integrative review.

To explore the role of family meetings for individuals living with dementia and their family caregivers. Integrative review. We conducted searches in the Cochrane Library, PubMed, CINAHL, and Embase databases (up to December 2022). Additionally, an ancestry search strategy was employed to supplement the retrieval of published literature related to family meetings or family conferences for people with dementia and their family caregivers. The review integrated 11 articles, comprising seven quantitative studies, two qualitative studies, and two case reports. The findings did not indicate a significant improvement in end-of-life quality for individuals with dementia in the family meetings group compared to those receiving usual care. Limited evidence suggested some improvement in mental health outcomes for family caregivers. Both intervention and control groups incurred high care costs. However, family meetings appeared to delay nursing home placements for individuals with dementia. Two qualitative studies provided insights into the experiences of families and healthcare professionals participating in family meetings, highlighting opportunities and challenges in implementing such meetings. Additionally, two case reports offered specific and illustrative accounts of typical family meetings. Family meetings can delay nursing home placements for elderly individuals with dementia. Families dealing with dementia perceive family meetings as an opportunity to collaborate with professionals in providing comprehensive care. Further research is needed to explore the effectiveness of family meetings in decision-making for families affected by dementia. Additionally, addressing timing and process coordination issues in family meetings is crucial for optimising their practices among families dealing with dementia. In order to make family meetings more accessible to families of individuals with dementia, we offer the following recommendations for future research and practice: Rather than a blanket rejection, the decision regarding the participation of individuals with dementia in family meetings should be based on their specific condition and the needs of their family. Coordination and harmonisation of opinions and perceptions among family members of individuals with dementia can sometimes be complex for healthcare professionals. The involvement of family coordinators may simplify this process. To determine the optimal timing for holding family meetings that can better assist families dealing with dementia, we propose that the right to initiate a meeting be granted to the family. This allows them to convene with healthcare professionals and address their concerns at their convenience.

Perceptions of legal system legitimacy among family members of individuals incarcerated for sex offenses.

Perceptions of legal system legitimacy among family members of individuals incarcerated for sex offenses.

Storytelling of Indigenous patient and family advocates engaged in patient-oriented research initiatives in the field of inflammatory bowel disease

Abstract Background and aim The history of colonization and its ongoing impact poses significant health disparities among Indigenous communities. We aimed to centre the voices and stories of Indigenous patients and family advocates (IPFAs—Indigenous patients living with inflammatory bowel disease [IBD] and family members of Indigenous individuals with IBD) engaged in patient-oriented research projects and who are part of the IBD among Indigenous Peoples Research Team (IBD-IPRT). Methods IPFAs and Indigenous and non-Indigenous researchers of the IBD-IPRT followed a storytelling research methodology to let IPFAs share their stories as research team members. Four IPFAs documented their experiences as IBD patients, advocates, and research partners. The stories were analyzed for themes. The identified themes were collaboratively verified with the IPFAs. Results The full stories shared by the IPFAs were transcribed and presented in this paper. Following a background analysis of themes in the 4 narratives, we were also able to identify 4 key themes that could be relevant to improving patient-oriented research initiatives: (1) health promotion, (2) leadership and voice, (3) community engagement, and (4) disease awareness and access to care. Trust building, strong relationships, and effective partnerships are core components for conducting patient-oriented research with Indigenous community members. Conclusions Indigenous patient engagement in health research is crucial to ensure that lived experiences, knowledge, and cultural values are adequately adopted to improve research outcomes. Centering IPFAs in IBD research can promote cultural awareness and actionable recommendations to improve health outcomes for individuals with IBD and their families and caregivers.

Mental health therapy for veterans with PTSD as a family affair: A qualitative inquiry into how family support and social norms influence veteran engagement in care.

Social support is important for posttraumatic stress disorder (PTSD) recovery and emerging literature indicate that social support could increase engagement in PTSD therapy. However, there is a need to understand how and why family involvement can increase treatment engagement to inform strategies used in clinical practice. This study explores how individuals with PTSD and family members of individuals with PTSD experience therapy and how social interactions help or hinder therapy engagement. We interviewed 18 U.S. military veterans who had been referred for psychotherapy for PTSD in the Veterans Health Administration and 13 family members and used rapid content analysis to identify themes. We found that engaging in therapy was a family-level decision that participants expected to improve family life. Veterans were motivated to seek treatment to protect their relationships with loved ones. Family members generally encouraged veterans to seek treatment. Specifically, family members who viewed PTSD as a treatable illness versus a static aspect of the veteran's personality expressed positive attitudes about the effectiveness of therapy for reducing symptoms. Veterans whose social networks included individuals with prior military or trauma-related experiences reported that their loved ones possessed more understanding of PTSD and described positive subjective norms around therapy. Family members are often embedded in the therapy process because PTSD has a profound impact on the family. Positive subjective norms for therapy are created by family encouragement and may influence veteran perceptions about the value of treatment. Family members should be engaged early in mental health therapy and to the extent desired by the patient and family member. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Only 32.3% of Breast Cancer Families with Pathogenic Variants in Cancer Genes Utilized Cascade Genetic Testing.

Hereditary cancer predisposition syndromes are responsible for approximately 5-10% of all diagnosed cancer cases. In order to identify individuals at risk in a cost-efficient manner, family members of individuals carrying pathogenic alterations are tested only for the specific variant that was identified in their carrier relative. The purpose of this study was to investigate the clinical use and implementation of cascade family testing (CFT) in families of breast cancer patients with pathogenic/likely pathogenic variants (PVs/LPVs) in cancer-related predisposition genes. Germline sequencing was carried out with NGS technology using a 52-gene panel, and cascade testing was performed by Sanger sequencing or MLPA. In a cohort of 1785 breast cancer patients (families), 20.3% were found to have PVs/LPVs. Specifically, 52.2%, 25.1%, and 22.7% of patients had positive findings in high-, intermediate-, and low-penetrance breast cancer susceptibility genes, respectively. Although CFT was recommended to all families, only 117 families (32.3%) agreed to proceed with genetic testing. Among the first-degree relatives who underwent CFT, 70.3% were female, and 108 of 121 (89.3%) were cancer free. Additionally, 42.7%, 36.7%, and 20.6% were offspring, siblings, and parents of the subject, respectively. Our data suggest that CFT was mostly undertaken (104/117, 88.8%) in families with positive findings in high-risk genes. Cascade family testing can be a powerful tool for primary cancer prevention by identifying at-risk family members. It is of utmost importance to implement genetic counseling approaches leading to increased awareness and communication of genetic testing results.

Evaluation of Family and Community Social Network Characteristics Among High-Risk Family Members to Improve Cancer-Related Health Behaviors.

To evaluate the effects of social network characteristics of individuals with a family history of cancer on the use of cancer-related services (e.g., screening, genetic counseling/testing). 170 family members of individuals with the most common hereditary or familial cancers. Data collection occurred between March and September 2021 using an online survey. Having strong within-immediate family relationships and family members who underwent more screening procedures was associated with increased breast cancer screening, and having more family members with cancer was associated with colorectal cancer screening. Having a large family, having family members who underwent screening for more cancers, and having strong social cohesion among families were associated with an increased rate of genetic testing. Nurses working with families affected by cancer should focus on strategies to strengthen relationships among family members to improve knowledge of cancer screening and available genetic services.

THE IMPACT OF OBSESSIVE-COMPULSIVE DISORDER ON FAMILY RELATIONS: a systematic replication

Obsessive-compulsive Disorder (OCD) is characterized by the presence of obsessions and/or compulsions that arise in a way that consumes excessive time for affected individuals, causing functional impairment and significant suffering. Considering that the family has played the role of main caregiver in the current psychosocial project, the present study aimed to investigate the overload of family members of patients previously with OCD, aiming to be a systematic replication of the study by Soares Neto et al. (2011), entitled “Overburden in family members of individuals with obsessive-compulsive disorder”. For data collection the Family Burden Assessment Scale (FBIS-BR) and a questionnaire that collected sociodemographic data and related to family life were used. Seven family members of subjects with OCD participated in this research, selected by degree of proximity, over 18 years old and without ongoing mental disorders. The research carried out a survey study, with quantitative and qualitative data analysis. Its purpose was to analyze and understand the degree of objective and subjective overload of these family members. As main results high levels of overload were found, especially in the items covered by the subjective dimension of the scale, although the overall objective score was higher. Subscale A (referring to the frequency of performing daily activities) recorded the greatest impact on objective burden; while subscale E (referring to concern for psychiatric patients), compared to all subscales, had the highest mean score. In view of this, it is essential that there is greater support from health services and professionals to families, considering that they have occupied the position of main caregiver.

Focus groups on employment related soft skills for transition age youth with disabilities

BACKGROUND: Work-related soft skills can be an important factor for successful employment outcomes, particularly for individuals with disabilities. OBJECTIVE: This study conducted two focus groups with stakeholders for two state Rehabilitation Councils to identify the needs of specific work-related soft skills for employment success of transition age youth with disabilities. METHODS: 30 participants including 10 individuals with disabilities, 5 family members of individuals with disabilities, 5 disability service providers, 9 disability advocates and 1 unidentified, completed two focus groups to identify a list of soft skills by importance for transition age youth with disabilities to succeed at work. RESULTS: Focus group participants reported that communication skills (face to face communication and emails to coworkers, customers, and employers), conflict resolution skills, advocacy skills, and professionalism are the most important soft skills for transition age youth with disabilities to be successful at work. CONCLUSION: Findings indicated soft skills are critical to work success for transition age youth with disabilities. Vocational rehabilitation providers should teach these critical soft skills when serving transition age youth with disabilities.

Posttraumatic growth in family members of individuals with methamphetamine use disorder

Objectives: This study aimed to determine post-traumatic growth and its predictors in female relatives of patients with methamphetamine use disorder. Methods: The volunteers in our study consisted of 80 adult women who were first-degree relatives of male patients diagnosed with MUD. The Post-Traumatic Growth Inventory, the Hospital Anxiety-Depression Scale, the Impact of Events Scale , and the short form of the Coping with Stressful Situations Inventory were given to the relatives of the patients. Results: In our study, being employed and being married were found to affect task-oriented coping and changes in self-perception positively. Task-oriented coping or seeking emotional support from others predicted higher PTG. Task-oriented coping was positively associated with emotional coping and a change in the philosophy of life. The regression analysis determined that task-oriented and avoidant coping mechanisms were the best predictors of post-traumatic growth. Conclusions: The findings suggest that environmental and personal factors, such as being married, being employed, and the quality of social relationships that emerge with emotional and instrumental support, influence the experience of life crises. In addition, the duration of methamphetamine uses, the problem's, and the search for solutions were all associated with higher post-traumatic growth. Thus, the results of this study demonstrate that task-oriented coping, seeking emotional support, and the duration of methamphetamine use may contribute to post-traumatic growth.

Familial coaggregation of MASLD with hepatocellular carcinoma and adverse liver outcomes: Nationwide multigenerational cohort study

Metabolic dysfunction-associated steatotic liver disease (MASLD; formerly NAFLD) is the fastest growing cause of hepatocellular carcinoma (HCC) worldwide. However, whether family members of individuals with MASLD also share an increased risk of developing HCC is unknown. This nationwide multigenerational cohort study involved family members of all Swedish adults diagnosed with biopsy-proven MASLD (1969-2017), and matched general population comparators. Using the Swedish Multi-generation Register, we identified 38,018 first-degree relatives (FDRs: parents, siblings, offspring) and 9,381 spouses of patients with MASLD, as well as 197,303 comparator FDRs and 47,572 comparator spouses. We used Cox proportional hazards models to calculate adjusted hazard ratios (aHRs) for HCC, major adverse liver outcomes (cirrhosis, decompensated liver disease or liver transplantation), liver-related mortality, extrahepatic cancer, and non-liver-related mortality. Over a median of 17.6 years, the rate of the primary outcome HCC was higher in MASLD FDRs vs. comparator FDRs (13 vs. 8/100,000 person-years [PY]; aHR 1.80, 95% CI 1.36-2.37). The HCC risk was further increased in FDRs of individuals with liver fibrosis/cirrhosis (aHR 2.14, 95% CI 1.07-4.27; PHeterogeneity= 0.03). MASLD FDRs also had higher rates of major adverse liver outcomes (73 vs. 51/100,000 PY; aHR 1.52, 95% CI 1.36-1.69) and liver-related mortality (20 vs. 11/100,000 PY; aHR 2.14, 95% CI 1.67-2.74). MASLD FDRs with any concomitant chronic liver condition experienced accelerated progression of liver disease (aHR 1.47, 95% CI 1.29-1.67). MASLD spouses were at higher risks of major adverse liver outcomes (86 vs. 74/100,000 PY; aHR 1.23, 95% CI 1.01-1.51) and liver-related mortality (25 vs. 19/100,000 PY; aHR 1.93, 95% CI 1.15-3.23), but not of HCC (aHR 1.43, 95% CI 0.87-2.35). There is distinct familial clustering of adverse liver-related outcomes in families of individuals with biopsy-proven MASLD, with higher relative risks of HCC, progressive liver disease, and liver-related mortality, but absolute risks are low. Metabolic dysfunction-associated steatotic liver disease (MASLD; formerly termed NAFLD) clusters in families with high genetic susceptibility and shared environmental risk factors, but the risks of developing hepatocellular carcinoma and other major liver-related outcomes in family members of individuals with MASLD are largely unknown. This large nationwide multigenerational cohort study involving family members (first-degree relatives and spouses) of individuals with biopsy-proven MASLD and of matched general population comparators found slightly increased risks of hepatocellular carcinoma in first-degree relatives, and of developing cirrhosis and liver-related mortality in all family members of individuals with biopsy-proven MASLD. The findings of this study provide large-scale evidence to inform clinical practice guidelines for recommendations on the early identification of individuals at higher risk of liver-related morbidity and mortality.

Walking the Tightrope: Communicative Tensions in Disenfranchised Grief Among Families Managing Substance Use Disorder

ABSTRACT This study investigates the communicative tensions inherent to the experience of disenfranchised grief among family members of individuals with substance use disorder (SUD). In the context of a family member with SUD, 98 adult-affected family members (AFMs) described their struggles with disenfranchised grief, a form of grief characterized by deprivation of support or recognition from others. The results of a deductive, qualitative analysis guided by relational dialectics theory (RDT; Baxter & Montgomery, 1996) indicated that AFMs traverse the dialectical poles of integration-separation, stability-change, and expression-non-expression both within the relationship (internally) and with those “on the outside” (externally). Additionally, AFMs grappled with a tension cited in previous work examining contradictions among spouses managing adult dementia: presence-absence (Baxter etal., 2002). The findings (a) illuminate the disenfranchised grief experienced by AFMs, (b) unpack the interactional implications of this unique form of suffering by situating disenfranchised grief as a communicative phenomenon, and (c) call for increased social and clinical support for AFMs experiencing disenfranchised grief.

The Migration of Lynch Victims' Families, 1880-1930.

We examine the relationship between the lynching of African Americans in the southern United States and subsequent county out-migration of the victims' surviving family members. Using U.S. census records and machine learning methods, we identify the place of residence for family members of Black individuals who were killed by lynch mobs between 1882 and 1929 in the U.S. South. Over the entire period, our analysis finds that lynch victims' family members experienced a 10-percentage-point increase in the probability of migrating to a different county by the next decennial census relative to their same-race neighbors. We also find that surviving family members had a 12-percentage-point increase in the probability of county out-migration compared with their neighbors when the household head was a lynch victim. The out-migration response of the families of lynch victims was most pronounced between 1910 and 1930, suggesting that lynch victims' family members may have been disproportionately represented in the first Great Migration.

Naloxone Knowledge and Attitudes Towards Overdose Response Among Family Members of People who Misuse Opioids.

Providing family members of individuals with opioid use disorders (OUD) naloxone is a cost-effective way to prevent overdose deaths. However, misconceptions and negative attitudes towards naloxone hinder family engagement with naloxone programs. This study examines factors associated with knowledge and attitudes toward naloxone among adults with close family members who misused opioids. Adults with family members (parent, step-parent, child, spouse, sibling, or step-sibling) who misused opioids (N = 299) completed a web-based survey. Participants were recruited through treatment providers, community groups, and social media. Surveys assessed naloxone knowledge, attitudes toward overdose response, demographics, completion of naloxone training, attitude toward medications for OUD, and family members' overdose history. Multiple regression was used to identify factors associated with naloxone knowledge (Model 1) and attitudes toward overdose response (Model 2). A graduate degree (B = .35, p < .003) and a history of overdose (B = 0.21, p = .032) were associated with greater naloxone knowledge. Age (B = .11, p < .001), race/ethnicity (B = -1.39, p = .037), naloxone training (B = 2.70, p < .001), and more positive attitude toward medications for OUD (B = 1.50, p = .003) were associated with attitudes toward overdose response. Family members are potential allies in reducing drug overdose deaths, and families may need broader education about naloxone. Awareness of previous overdose was associated with greater naloxone knowledge. Findings related to race/ethnicity suggest the need to reach family members of minoritized racial groups to provide access to naloxone training. Findings point to where education and distribution efforts may focus on increasing knowledge and improving attitudes among those closest to people with OUD.

Ethnoracial Differences in Family Members'Early Contact with Formal and Informal Resources on the Pathway to Care during the Early Stages of Psychosis.

The present study examined whether there were ethnoracial differences in the use of formal and informal resources by family members of individuals in the early stages of psychosis. A sample of 154 family member respondents participated in an online cross-sectional survey. Ethnoracially minoritized family members disproportionately made early contact with informal resources (e.g., religious/spiritual leaders, friends, online support groups) on the pathway to care compared to non-Hispanic white family members who tended to contact formal resources (primary care doctors/nurses or school counselors). A description of early contact among Black and Hispanic family members are also described. Study findings highlight that ethnoracially minoritized families seek out support and/or resources from informal resources embedded within their community. Our findings suggest the need for targeted strategies that leverage the reach of informal settings to capture family members as well as general community members.

Truth that Matters

Truth that Matters