Family Members Of People Research Articles

Opportunities and risks of self-binding directives: A qualitative study involving stakeholders and researchers in Germany.

Self-binding directives (SBDs) are a special type of psychiatric advance directive in which mental health service users can consent in advance to involuntary hospital admission and involuntary treatment during future mental health crises. This study presents opportunities and risks of SBDs reported by users with bipolar disorder, family members of people with bipolar disorder, professionals working with people with bipolar disorder and researchers with expertise in mental health ethics and law. Seventeen semi-structured interviews with users, family members and professionals, and one focus group with five researchers were conducted. The data was analyzed using qualitative content analysis. Six opportunities and five risks of SBDs were identified. The opportunities were promotion of autonomy and self-efficacy of users, relief of responsibility for family members, early intervention, reduction of (perceived) coercion, positive impact on the therapeutic relationship and enhancement of professionals' confidence in decision-making. The risks were problems in the assessment of mental capacity, inaccurate information or misinterpretation, increase of coercion through misuse, negative impact on the therapeutic relationship due to noncompliance with SBDs, and restricted therapeutic flexibility and less reflection on medical decision-making. Stakeholders tended to think that the opportunities of SBDs outweigh their risks, provided that appropriate control and monitoring mechanisms are in place, support is provided during the drafting process and the respective mental healthcare setting is sufficiently prepared to implement SBDs in practice. The fact that stakeholders consider SBDs as an opportunity to improve personalized crisis care for people with bipolar disorder indicates that a debate about the legal and clinical implementation of SBDs in Germany and beyond is necessary.

Bereavement outcomes in family members of those who died in acute care hospitals before and during the first wave of COVID-19: A cohort study

Background: The COVID-19 pandemic has caused millions of deaths worldwide, leading to symptoms of grief among the bereaved. Neither the burden of severe grief nor its predictors are fully known within the context of the pandemic. Aim: To determine the prevalence and predictors of severe grief in family members who were bereaved early in the COVID-19 pandemic. Design: Prospective, matched cohort study. Setting/Participants: Family members of people who died in an acute hospital in Ottawa, Canada between November 1, 2019 and August 31, 2020. We matched relatives of patients who died of COVID (COVID +ve) with those who died of non-COVID illness either during wave 1 of the pandemic (COVID −ve) or immediately prior to its onset (pre-COVID). We abstracted decedents’ medical records, contacted family members >6 months post loss, and assessed grief symptoms using the Inventory of Complicated Grief-revised. Results: We abstracted data for 425 decedents (85 COVID +ve, 170 COVID −ve, and 170 pre-COVID), and 110 of 165 contacted family members (67%) consented to participate. Pre-COVID family members were physically present more in the last 48 h of life; the COVID +ve cohort were more present virtually. Overall, 35 family members (28.9%) had severe grief symptoms, and the prevalence was similar among the cohorts (p = 0.91). Grief severity was not correlated with demographic factors, physical presence in the final 48 h of life, intubation, or relationship with the deceased. Conclusion: Severe grief is common among family members bereaved during the COVID-19 pandemic, regardless of the cause or circumstances of death, and even if their loss took place before the onset of the pandemic. This suggests that aspects of the pandemic itself contribute to severe grief, and factors that normally mitigate grief may not be as effective.

Anticipatory Grief in Dementia: An Ethnographic Study of Loss and Connection

In this article, I address the experiences of family members of people with dementia, as they expressed the sensation of gradually losing the person with dementia. Based on ethnographic fieldwork in nursing homes in the Netherlands, and contributing to the anthropology of grief, I explore the co-existence of experiences of anticipatory grief and manifestations of care to maintain meaningful relations. I show how my interlocutors adapted to changing circumstances as the disease progressed, and in so doing found new ways to relate, as well as prepared for future losses and the expected end of life. I argue that anticipatory grief is temporal and relational, encompassing both present and future losses, and involving a continuous negotiation between the loss and the continuing relationship. I underscore the entanglement of loss and connection, showing how both exist parallel to, and may emerge from one another, and demonstrating how an anthropological approach to anticipatory grief can reveal the nuanced and equivocal character of experiences of illness and at the end of life.

Starting with us: Imagining relational, co-designed policy approaches to improve healthcare access for rural people with disability.

Access to healthcare for rural Australians is a wicked problem, particularly for rural people with disability. Contemporary healthcare access frameworks in Australia tend to overlook geography, use a 'one-size-fits-all approach', and disregard the valuable relationships between key rural healthcare stakeholders, including rural people with disability, rural health services and health professionals. The United Nation's Convention on the Rights of Persons with Disabilities requires the Australian Government to engage people with disability in the design of policies that will shape their day-to-day lives, including their access to healthcare. However, the nature and extent to which rural people with disability, rural health professionals and other key rural stakeholders are involved in the design of Australian policies impacting the health of rural people with disability are unknown. This paper examines approaches taken to engage rural people with disability and health professionals in the design of Australian disability policy impacting healthcare access, and reimagines future processes which can improve healthcare access for rural people with disability. Co-design and ethics of care lenses are applied to policy design approaches in this paper. We approach this work as rural disability and health academics, rural health professionals, and as rural people with disability, neurodivergence and family members of people with disability. We argue future co-designed policy approaches could focus on driving change towards equity in healthcare access for rural people with disability by harnessing the relational nature of rural healthcare.

Using Journey Mapping to support staff, family members and allies of people with dementia to think and act differently during a care transition: The benefits and limits of care imagination.

Research methods are not just for data collection, but can also be engaged in to promote more immediate benefits for participants and to create social change. This paper reports on how journey mapping was used with staff and family members of people with dementia in a residential aged care facility in regional NSW, Australia. The study was conducted in the context of a care transition, where residents, including people with dementia moved from an existing site to another new facility. Care transitions are frequent yet difficult for people with dementia to negotiate, so it was important to predict their nature and understand what might make the move easier. We used an innovative visual method known as 'journey mapping' to engage 45 staff and 18 family members to inform supports for 30 people with dementia, who had been identified as needing additional support during the planned transition. The journey mapping process was useful for fostering the caring imagination and encouraging active and creative planning around change for the people with dementia. It also highlighted the entrenched inequalities in the aged care sector, where poorly paid staff wanted to enact broad ranging supports but felt unsupported to do so. In other words, to improving and re-imagining transitional care for people with dementia requires structural and systemic change rather than just localised re-imaginings. [245].

CARE OF FAMILY MEMBERS OF PEOPLE WITH MALIGNANT NEOPLASTIC WOUNDS AT HOME

Objectives: To understand how caregivers of people with malignant neoplastic wounds perform care at home. Method: A qualitative study that involved seven relatives of people with malignant wounds undergoing treatment in a high complexity oncology unit. The data were produced through semistructured interviews and submitted to thematic content analysis, proposed by Bardin. Results: Seven family-caregivers, all female, young people who left work to dedicate themselves to the sick person were interviewed. Three categories emerged after content analysis: family members seek guidance to care for patients with malignant neoplastic wounds at home; they adopt strategies in wound care; and report the need for support from health professionals and institutions, because they face difficulties in care, especially in primary care units. Conclusion: Family members of people with malignant neoplastic wounds face difficulties, mainly due to the scarcity of technical knowledge and lack of support from health institutions and from professionals.

The transformative dance of the crisis to resignify social educational work: auto-ethnographical reflections on a cooperative enquiry in Northern Italy during the COVID-19 pandemic

This contribution proposes an autoethnographic reflection on a cooperative enquiry involving social workers, volunteers and family members of people with intellectual disabilities in Northern Italy. The author, a social worker and doctoral student, recognises the complexity of her own positioning and reflects on the educational work that takes place in the social sphere, on the risks connected to a technocratic logic and on critical, and transformative possibilities offered by the crisis. The author proposes a systemic reflexivity that challenges the dominant discourses, connects the micro, meso and macro levels and promotes different ways of knowing. The dynamism of the body, linked to the author's experience in the field of contemporary dance, becomes a symbolic way to decolonise the posture of social workers and open it up to the transformative potential of a sensitive, conscious and incorporated social educational work.

Dukungan Keluarga Tentang Selfcare Terhadap Anggota Keluarga Penderita Luka Gangguan Diabetes Melitus Di Poli Bedah RSUD Leuwiliang Tahun 2021

Introduction: Diabetes mellitus is a condition that is often experienced by diabetics. Wounds with diabetes mellitus are one of the dangerous complications of diabetes and need to be treated by doctors; therefore good family support is needed to motivate family members with diabetes mellitus disorders and good self-care so as not to experience complications. Family support about selfcare among family members regarding diabetes mellitus disorders at the surgery policy at Leuwiliang Hospital. Methods: The research used was a descriptive correlation with a cross-sectional approach. The population in this study amounted to 160 people. Samples were taken using a simple random sampling technique on 48 patients with diabetes mellitus disorders. The instruments used are questionnaires and observation sheets. Results: Data analysis used univariate and bivariate data using the Chi-Square test. The results of this study indicate that there is a relationship between family support (p-value = 0.001) with family members with diabetes mellitus. There is a relationship between selfcare (p-value = 0.000) and family members with diabetes mellitus. Of the 15 family members with wounds with diabetes mellitus who lack family support, 7 (14.6%) have wound regeneration. Of the 33 family members with diabetes mellitus who had good family support, there were 29 (60.4%). Of the 5 family members with diabetes mellitus who had poor selfcare, 2 (4.2%) had damaged tissue and wound regeneration. Of the 43 family members with diabetes mellitus who had good selfcare, 34 (70.8%) had healthy tissues. Discussion: Perceptions of Family Support have a close relationship with Selfcare among Family Members of People with Diabetes Mellitus Disorders.

Humanising health and social care: What do family members of people with a severe acquired brain injury value most in service provision

AbstractIntroduction:Family members living with relatives with severe acquired brain injury (ABI) face many challenges. Although this is recognised, service provision in the UK is poor and needs development.Method:In order to support innovative service delivery for family members, we reflect on the research carried out by the first author using a new perspective – a lifeworld humanising approach in order to consider (a) the dehumanising existential challenges facing family members of people living with severe ABI and (b) what family members most value in service delivery presented in humanising terms.Findings:Following ABI, family members may enter a parallel lifeworld (feeling separate from ‘usual’ life as it flows by) and face fundamental existential challenges of isolation, loss of agency, dislocation, loss of meaning and loss of personal journey. Family members have reported that service providers who are highly valued are those who act as ‘expert companions’. This role involves supporting families in some, if not all of the following (a) reaching across into the lifeworld of the family member and appreciating and validating what they are facing, (b) helping them make sense of their situation in terms which are meaningful to them and which they can explain to others, (c) through ABI expertise, supporting their relative through knowing their interests and needs and adapting the environment to suit these to help their relative to ‘settle’ and flourish, (d) supporting family members to share their life experiences – developing safe and trusting relationships, (e) having a humane, positive, creative and for some, a humorous approach, (f) being responsive to changing situations, (g) being available to call during times of worry or crisis and (h) help link with others and helpful networks.Discussion:It is suggested that the role and approach of companion may help family members regain some sense of their own life and their well-being.

Relational Displacement and the Colonial Legacies of Copper Mining in the Kalahari Copperbelt Region of Botswana

Displacements are understood as having wide-ranging impacts on livelihoods and community access to resources. Using interviews and oral histories of farmers displaced by a copper mine in Botswana, the research described here demonstrates that displacement not only changes lived experiences of those who are displaced, but also has broad relational impacts by dispersing displaced people's family members and neighbors, disenfranchising farmers from their cattle and land, shifting the ways that human-wildlife conflict plays out, and creating a new and disruptive relationship between cattle farmers and the mining industry. Postcolonial and Indigenous scholars have long written about human-animal kinship and ongoing colonial and capitalist relations that weave (sometimes disparate) communities closer together or further apart. The work described here demonstrates that this knowledge allows for a clearer understanding of how displacement impacts the material and relational worlds of people and nonhumans displaced by the disruptive forces of resource development.

Construction and validation of educational technology for family members of people with venous ulcers.

To build and validate an educational technology in the form of a booklet, aimed at the family members of people with venous ulcers to assist them in their care. A methodological study, which went through the stages of bibliographic survey and situational diagnosis for the construction of the booklet and validation of content, appearance, and adequacy with judges and the target audience. The Content Validity Index, the Suitability Assessment of Materials, and the Concordance Index were used. In the validation with the content and appearance judges, the booklet showed an excellent overall Content Validity Index (tCVI=0.92). The technical judges evaluated the booklet as "superior" (average of 91%). The booklet underwent adjustments, and validation was performed with the target population, reaching an agreement rate higher than 75%. The educational booklet developed was validated for content and appearance and considered suitable for use by family members of people with venous ulcers.

Meanings constructed by family members about coerced treatment for alcohol and drug use in Brazil.

In Brazil, regarding drug and alcohol treatment, there is an emphasis on financing long-term residential treatment and a lack of community-based approaches, leading to a burden on families. Therefore, family members increasingly seek coerced treatment even though there are reports of human rights violations in this context. This study aims to describe the meanings constructed by family members regarding coerced treatment of people who use alcohol and other drugs. We conducted 15 interviews with the family members of people who use alcohol and other drugs and had requested coerced treatment. The interviews were recorded, transcribed and analyzed using reflexive thematic analysis. Through analysis, five major themes regarding the use of coerced treatment were constructed: (1) as protection for people from the dangers related to the use of alcohol and other drugs; (2) as punishment, aiming to prevent the return to drug use; (3) as a guarantee of abstinence; (4) as a consequence of the loss of autonomy to decide what was best for themselves; and (5) as time for the reorganization of the family members' lives. The lack of emotional support in relation to their concerns regarding the health and safety of the person using drugs, the prohibitionist discourse and the emphasis on abstinence shared in the decision to seek coerced treatment, and the lack of knowledge about voluntary treatments contributed to family members requesting coerced treatment more than once. This study highlights the importance of the need for public policies that expand evidence-based voluntary approaches, especially community-based services, and promote the disclosure of these services to eliminate coerced treatment. Health care providers should support the feelings of family members and provide guidelines related to other treatment options, making families feel genuinely included as partners in the care of people who use drugs.

Familial support in integrated treatment with antiretroviral therapy and medications for opioid use disorder in Vietnam: A qualitative study

Background: Patients report that familial support can facilitate initiation and maintenance of antiretroviral therapy (ART) and medications for opioid use disorder (MOUD). However, providing such support can create pressure and additional burdens for families of people with opioid use disorder (OUD) and HIV. We examined perspectives of people with HIV receiving treatment for OUD in Vietnam and their family members. Methods: Between 2015 and 2018, we conducted face-to-face qualitative interviews with 44 patients and 30 of their family members in Hanoi, Vietnam. Participants were people living with HIV and OUD enrolled in the BRAVO study comparing HIV clinic-based buprenorphine with referral to methadone treatment at 4 HIV clinics and their immediate family members (spouses or parents). Interviews were professionally transcribed, coded in Vietnamese, and analyzed using a semantic, inductive approach to qualitative thematic analysis. Results: Family members of people with OUD and HIV in Vietnam reported financially and emotionally supporting MOUD initiation and maintenance as well as actively participating in treatment. Family members described the burdens of supporting patients during opioid use, including financial costs and secondary stigma. Conclusions: Describing the role of family support in the lives of people living with OUD and HIV in the context of Vietnam enriches our understanding of their experiences and will support future treatment efforts targeting the family unit.

Experiences lived by family members of people who committed suicide: approach to biographic narratives

RESUMO Objetivo: Compreender as experiências vivenciadas por familiares sobreviventes ao suicídio e descrever as tipologias de casos biográficos por meio da abordagem de entrevistas e análise de narrativas biográficas. Método: Pesquisa qualitativa, de abordagem reconstrutiva de casos biográficos de Rosenthal fundamentada na sociologia fenomenológica de Schutz. Foram realizadas entrevistas narrativas entre novembro/2017 e fevereiro/2018, em uma cidade no sul do Brasil, com onze familiares sobreviventes ao suicídio. A análise seguiu as etapas da reconstrução de caso biográfico de Rosenthal. Resultados: Apresenta-se a reconstrução de dois casos biográficos com tipologias distintas: papel materno diante do suicídio e estigmatização social; significação cultural de família como um recurso para o enfrentamento do suicídio. Conclusão: Considera-se relevante ouvir esses familiares, pois a compreensão de suas experiências pode subsidiar os profissionais da área na implementação de ações de cuidado.

Mandatory corporal punishment and its consequences on repeat drug offenders in Malaysia: Call to action.

In Brazil, regarding drug and alcohol treatment, there is an emphasis on financing long-term residential treatment and a lack of community-based approaches, leading to a burden on families. Therefore, family members increasingly seek coerced treatment even though there are reports of human rights violations in this context. This study aims to describe the meanings constructed by family members regarding coerced treatment of people who use alcohol and other drugs.We conducted 15 interviews with the family members of people who use alcohol and other drugs and had requested coerced treatment. The interviews were recorded, transcribed and analyzed using reflexive thematic analysis.Through analysis, five major themes regarding the use of coerced treatment were constructed: (1) as protection for people from the dangers related to the use of alcohol and other drugs; (2) as punishment, aiming to prevent the return to drug use; (3) as a guarantee of abstinence; (4) as a consequence of the loss of autonomy to decide what was best for themselves; and (5) as time for the reorganization of the family members’ lives. The lack of emotional support in relation to their concerns regarding the health and safety of the person using drugs, the prohibitionist discourse and the emphasis on abstinence shared in the decision to seek coerced treatment, and the lack of knowledge about voluntary treatments contributed to family members requesting coerced treatment more than once.This study highlights the importance of the need for public policies that expand evidence-based voluntary approaches, especially community-based services, and promote the disclosure of these services to eliminate coerced treatment. Health care providers should support the feelings of family members and provide guidelines related to other treatment options, making families feel genuinely included as partners in the care of people who use drugs.

Development of the Tactile Map Creator (TMC) Application

There are multiple studies demonstrating that 3D printed maps are important to people with blindness. When designed properly, they help users by improving safety and mobility and allow people with blindness to efficiently learn spatial information from the map and plan their travel prior to navigation. However, tactile maps are still not widely among people with blindness, as they are not readily available to them. Creating maps for each person needing a map of a certain location currently requires help from an individual with advanced technical training. They need to use specialized software for 3D models that personnel from disability services and family members of people with blindness usually have no experience with. The goal of this research is to design and implement software that can be used for the automatic generation of maps and be accessible to the general public. Our hypothesis is that by automating all the challenging steps (generation of the 3D model and drawing of optimally designed symbols), this will lead to increased usability and acceptance. Here, we demonstrated an early prototype and evaluated our hypothesis in a user study. To assess the success of this approach, participants answered questions about the process, usability, and social impacts of the software. Overall, participants liked the application because it was easy to use and allowed them to create custom maps with appropriate tactile-encoding features that provide meaningful information to the end user.

Trialogue Meetings: Engaging Citizens and Fostering Communities of Wellbeing Through Collective Dialogue.

Community-based participatory approaches are widely recognized as valuable methods for improving mental health and well-being by enabling a greater sense of liberty among participants, through the development of equitable policies and practices, which accommodate a range of diverse perspectives. One such approach, “Trialogue Meetings,” has been found to encourage disclosure and dialogue surrounding mental health, facilitate the growth and development of communities in relation to people’s experience of mental health difficulties, service provider and community response. Emerging in the 1990s because of perceived and felt inequitable relations between people with lived experience of mental health difficulties, family members of people with mental health difficulties and professionals providing mental health service provision. This approach has been shown to successfully reduce stigma and discrimination and improve relations between stakeholders in community and mental health care settings. Trialogue Meetings incorporate Open Dialogue methods to allow multiple stakeholder groups to participate in conversations around a given topic and enable the creation of a common language and mutual understanding. Trialogue Meetings have added benefits of allowing individuals to express themselves better, gain a sense of relationality and community with others and address predetermined power hierarchies with prescribed responses to people’s experiences. In this perspective, we present an outline for Trialogue Meetings as a medium for enhancing wellbeing, providing a transformative empowering process for deliberate discursive practice and engaging citizens through sustained collective dialogue.

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.

Recommendations for Screening and Diagnosis of Chagas Disease in the United States.

BackgroundChagas disease affects an estimated 326 000–347 000 people in the United States and is severely underdiagnosed. Lack of awareness and clarity regarding screening and diagnosis is a key barrier. This article provides straightforward recommendations, with the goal of simplifying identification and testing of people at risk for US healthcare providers.MethodsA multidisciplinary working group of clinicians and researchers with expertise in Chagas disease agreed on 6 main questions, and developed recommendations based on the Grading of Recommendations Assessment, Development and Evaluation (GRADE) methodology, after reviewing the relevant literature on Chagas disease in the United States.ResultsIndividuals who were born or resided for prolonged time periods in endemic countries of Mexico and Central and South America should be tested for Trypanosoma cruzi infection, and family members of people who test positive should be screened. Women of childbearing age with risk factors and infants born to seropositive mothers deserve special consideration due to the risk of vertical transmission. Diagnostic testing for chronic T. cruzi infection should be conducted using 2 distinct assays.ConclusionsIncreasing provider-directed screening for T. cruzi infection is key to addressing this neglected public health challenge in the United States.

Shortage of cancer drugs in Mexico

On July 24, 2021, thousands of cancer survivors, parents and relatives of children with cancer, and family members of people with cancer, as well as people affected by other diseases, marched through the streets of Mexico City to protest against an ongoing shortage of medicines across the country.