Perspective Of Family Members Research Articles

The Intergenerational Impact of China's New Rural Pension Scheme

The Intergenerational Impact of China's New Rural Pension Scheme

The trajectory of crack users to the street situation in the perspective of family members.

Objective. To understand the family experience regarding the trajectory of crack users for the street situation.Method. Qualitative study using the systemic approach as the theoretical referential and the narrative as methodological referential. We conducted interviews with eleven family members of crack users with street situation experience cared for at a community mental health service. We analyzed the interviews using the inductive content analysis technique.Results. The family members understood the trajectory of the crack users for the street situation from two perspectives. One before the street situation process, for which they described a problematic childhood, the presence of stressor traumas/events, vulnerabilities in the family environment, and their family members' encounter with the drug world. Moreover, another posterior to the street situation, for which they narrated the perception of alterations in the users, the discovery of crack use, the deepening of the individuals' relationship with the streets, and the adoption of coping strategies.Conclusion. It was made evident that the family adopts an explicative model for the behavior of drug use and contact with the streets based on the life history of the crack user family member.

Treatment outcome indicators of schizophrenia according to Brazilian family caregivers and outpatients

Background and objective: The need to measure treatment outcomes in mental health services from the perspective of users and family members has been highlighted in the literature as a fundamental aspect to improve the care provided. The objective of this study was to measure the treatment outcome provided by a Brazilian Psychosocial Care Center from the perspective of outpatients and their family members.Methods: A correlational study was performed with 84 outpatients and 40 family members, between 2015 and 2016, interviewing them using the Satisfaction (SATIS-BR), Perception of Change (PCS), Independent Living Skills (ILSS) and Family Burden (FBIS-BR) scales.Results: There was a high index of satisfaction with the mental health service, with a mean of 4.23 for the users interviewed and 4.36 for the family members. The perception of change presented a mean of 2.58 for the patients and 2.19 for the family members. The independent living ability presented a mean of 2.52.Conclusions: The high indices of satisfaction suggest successes, as well as points to be improved in the mental health policy implemented in the municipality. However, reintegration into the labor market was presented as an aspect with a need for investments through health and labor policies, since it was related to the subjective burden.

Community Treatment Orders and Supported Decision-Making.

This paper presents findings from an interdisciplinary project undertaken in Victoria, Australia, investigating the barriers and facilitators to supported decision-making (SDM) for people living with diagnoses including schizophrenia, psychosis, bipolar disorder, and severe depression; family members supporting them; and mental health practitioners, including psychiatrists. We considered how SDM can be used to align Australian laws and practice with international human rights obligations. The project examined the experiences, views, and preferences of consumers of mental health services, including people with experiences of being on Community Treatment Orders (CTOs), in relation to enabling SDM in mental health service delivery. It also examined the perspectives of informal family members or carers and mental health practitioners. Victoria currently has high rates of use of CTOs, and the emphasis on SDM in the Mental Health Act, 2014, is proposed as one method for reducing coercion within the mental health system and working towards more recovery-oriented practice. Our findings cautiously suggest that SDM may contribute to reducing the use of CTOs, encouraging less use of coercive practices, and improving the experience of people who are subject to these orders, through greater respect for their views and preferences. Nonetheless, the participants in our study expressed an often ambivalent stance towards CTOs. In particular, the emphasis on medication as the primary treatment option and the limited communication about distressing side effects, alongside lack of choice of medication, was a primary source of concern. Fears, particularly among staff, about the risk of harm to self and others, and stigma attached to complex mental health conditions experienced by consumers and their families, represent important overarching concerns in the implementation of CTOs. Supporting the decision-making of people on CTOs, respecting their views and preferences about treatment, and moving towards reducing the use of CTOs require system-wide transformation and a significant shift in values and practice across mental health service delivery.

Nothing about me without me: Children and young people's experiences with family group conferences

AbstractModern social work practice increasingly emphasizes the inclusion of service users in decision making during the service provision process. There is a growing movement within the child welfare system to include parents and the wider family network in decision making. However, children and young people's roles in child welfare system participatory processes where decisions are made about their lives have been understudied. The family group conference (FGC) is one such decision‐making process, which has been adopted internationally with the expectation that children and young people's voices and perspectives, along with their family members, will be elevated and influence decisions. As part of a 3‐year federal project of FGCs in one jurisdiction, this study collected fidelity data from professional and family member participants of FGCs, including children and young people. Descriptive data from a small sample of child and young people participating in FGC suggest differences in their perspectives regarding family empowerment, transparency, and inclusion in decision making, when compared with the perspectives of other family members and professionals for whom data are available. Suggestions for further reflection on FGC practice and additional ways to understand children and young people's perspectives about their involvement are noted.

The Sustainability of Tobacco Agribusiness in Temanggung District, Indonesia: The Perspective of Young-Adult Family Members of Farmers in Three Tobacco Center Villages

Tobacco agribusiness has contributed immensely to the economic, social, and cultural lives of the community of Temanggung district. The tobacco industry faces various challenges, such as government regulations regarding its health concerns, poor climatic conditions, decreasing agricultural land, price fluctuation of crops, and ageing farmers. However, the sustainability of tobacco agribusiness in Temanggung district still maintained by continuing their tradition, but threatened in the future by lack of farmers’ regeneration. This research is aimed at exploring and analysing the transmission of traditional knowledge in the framework of tobacco agribusiness sustainability from the perspective of young-adult family members of tobacco farmers. The focus is on: (1) aspects of social-culture and environment in the transmission of knowledge process; (2) the method of transmission of knowledge from older generation farmers; (3) the opinions of younger generation farmers in the transmission of knowledge process for the future; and (4) the role of younger generation in the transmission of knowledge. This study employed a qualitative case studies approach. Data for this research was acquired through literature review, direct observation, interview, and focus group discussions. A field study was conducted at three villages located in Temanggung district. Results indicated disparities in the level of optimism among young-adult family members of tobacco farmers towards the future of tobacco agribusiness. The high optimism among the young generation is one of the supporting factors of transmission and sustainability of traditional knowledge. This study also found important role of communications as additional points for Transactional Model proposed by Sameroff.

Strategies for Enhancing Family-Professional Partnership within Schoolwide Models of Behavior Support

Over the course of several weeks, Strickland-Cohen and Kyzar obtained qualitative data for Positive Behavior Intervention and Supports (PBIS). Positive Behavior Support (PBS) can be defined as “an approach to behavior support that includes an ongoing process of research-based assessment, intervention, and data-based decision making focused on building social and other functional competencies, creating supportive contexts, and preventing the occurrence of problem behaviors” (Kincaid, Dunlap, Kern, Lane, Bambara, Brown, & Knoster, 201, p. 70). PBIS is the “school-based application” of PBS (Kincaid et al., 2016, p.71). One critical feature of PBIS in schools is the inclusion of family member perspectives when developing school-wide expectations and behavioral goals. However, there is a dearth of research empirically related to how to best include families within the PBIS process. In a qualitative analysis, Strickland-Cohen and Kyzar (2018) assessed parent perceptions of family-professional partnerships between teachers and parents whose student received either Tier 1 or Tier 2 PBIS supports through a series of focus group interviews. The study examined experiences and events that affect communication about student behavior between the parents and teacher(s). Participants were 28 family members from three PBIS elementary schools within one school district in the Southwest United States. Participants were asked to answer questions related to strengths and weaknesses in communication with teachers, and ideas that they wish to express to teachers about supporting appropriate behavior and addressing challenging behavior. Based on the findings of this study, as well as other studies related to PBIS, this paper synthesizes the research literature and provides evidence-based strategies that teachers can implement in their classroom to strengthen partnerships with family members.

Caregivers\u2019 perspectives and experiences of withdrawing acetylcholinesterase inhibitors and memantine in advanced dementia: a qualitative analysis of an online discussion forum

BackgroundThere is considerable uncertainty surrounding the medications used to delay the progression of dementia, especially their long-term efficacy and when to withdraw treatment with these agents. Current research regarding the optimal use of antidementia medication is limited, contributing to variability in practice guidelines and in clinicians’ prescribing practices. Little is currently known about the experiences encountered by caregivers of people with dementia after antidementia medication is withdrawn.AimTo investigate the experiences and perspectives of carers and family members when antidementia medications (cholinesterase inhibitors and/or memantine) are stopped, by analysing archived threads and posts of an online discussion forum for people affected by dementia.MethodsArchived discussions from Talking Point, an online discussion forum hosted by the Alzheimer’s Society UK, were searched for threads discussing antidementia medication withdrawal and relevant threads were analysed thematically using the Framework method. Participant demographics were not established due to usernames which ensured anonymity.ResultsFour key themes emerged: (1) expectations about withdrawal, (2) method of withdrawal, (3) clinical condition on withdrawal, and (4) the effect of withdrawal on caregivers.ConclusionsOnline discussion forums such as Talking Point provide dementia carers with an outlet to seek help, offer advice and share experiences with other members. The study findings highlight the complexity surrounding optimising dementia pharmacotherapy and antidementia medication withdrawal, highlighting the need for treatment to be person-centred and highly individualised.

CARE ACTIONS FOR THE RELATIVES OF USERS OF PSYCHOACTIVE SUBSTANCES: THE PERSPECTIVES OF PROFESSIONALS AND FAMILIES

ABSTRACT Objective: to understand the care actions developed for the relatives of users of psychoactive substances from the perspective of professionals and family members. Method: based on the Social Phenomenology approach of Alfred Schütz’s. The research was performed in a Psychosocial Alcohol and Drug Attention Center of a municipality in the State of Rio Grande do Sul, Brazil. Phenomenological interviews were conducted with 13 professionals and 12 family members of users of psychoactive substances, from July to November, 2016. The steps suggested by Social Phenomenology researchers were used for data analysis. Results: three categories were revealed: care actions for family members from the perspective of professionals; care actions identified by family members, and reciprocity of perspectives in relation to care actions for family members. The professionals reported care actions developed in the service for the family: listening, reception, individual care, guidance, referrals, family groups and home visits; and care actions identified by family members: family group, care, reception, resolution, psychological support and guidance. The reciprocity of perspectives in relation to care actions for family members, from the perspective of the professionals and family members was: a group of family members, reception and guidance. Conclusion: the findings provide support to professionals to review their health care actions, based on the expectations of care mentioned by family members as well the contribution to comprehensive and resolute mental health care, especially in out-of-hospital care.

My Child's Journey Home: Perspectives of Adult Family Members on the Separation and Reunification of the "Disappeared" Children of El Salvador.

This article explores family separation and reunification of the disappeared Salvadoran children separated from their families during El Salvador's civil war (1980-1992) from the perspectives of adult relatives. During separation, adult relatives experienced an "unresolvable loss." Following reunion, families experienced an immediate relief that was often accompanied by an "ambiguous reunification." Emotions were especially complicated and painful when the separation had been a "forced choice" by the parent under coercive wartime political conditions. Adoptive parents strongly influenced reunification. Findings suggest that disappeared children and biological and adoptive family members need psycho-social support throughout separation and reunification.

Schooling of Students with Intellectual Disabilities: Family and School Perspectives

Abstract Educational policies aimed at school inclusion have led to an increased enrollment of students with special education needs (SEN) in mainstream schools and, as a result, there is an increase in transfers from specialized institutions to mainstream schools. This study analyzed the perspectives of school professionals and family members on school transfers of students with intellectual disabilities (ID). Six family members and ten school professionals participated in the study. All attended semi-structured interviews, whose analysis allowed us to identify five thematic axes: teacher training; lack of preparation and information; lack of supports; lack of preparation for transfer; expectations regarding the ID student, mainly concerning behavioral characteristics, learning and performance. Results confirm data from research on the implementation of special education in inclusive environments, indicating that teachers’, managers’ and families’ conceptions of inclusion depend on the severity of the student’s disability, and on the skills and attitudes of the professionals.

Prevention of the consumption of illicit drugs from the perspective of families and significant others to illicit drug users

ABSTRACTThis research described the perspective of family members and significant others to illicit drug users regarding illicit drug use prevention initiatives. A descriptive quantitative study was developed in a local health care center in an inner city of São Paulo, Brazil. A total of 100 adults were interviewed, who considered themselves as personally affected by having a family member or significant who has been or is a user of illicit drugs. Data capture was standardized through a form developed in the EpiData program, and analyzed using descriptive statistics with the support of the Statistical Package for Social Sciences (SPSS®). Results pointed different prevention initiatives and the institutions that should be responsible for them. For preventive actions to be successful, they must be intersectoral and involve community and families.

Patient and family members' perceptions of family participation in care on acute care wards.

Hospital leaders, policymakers and healthcare professionals are realising the benefits of delivering care that promotes family participation because it is known to enhance the quality of care, and improve patient satisfaction. The aim of this study was to explore, from the perspective of patients and family members within an adult acute care ward: (a) their beliefs and attitudes towards family participation in patient care and (b) staff behaviours that support or hinder family participation in patient care. A naturalistic approach with an exploratory sequential design was used in a medical assessment and planning unit of a regional referral hospital in Australia. Purposeful maximum variation sampling was used to recruit patients and family members who differed in age, ethnicity, relationship to patient and gender. Observer-as-participant observation data and semi-structured interviews were undertaken. Following separate inductive content analysis, data were triangulated. Thirty-two patients and 26 family members were recruited. Thirty hours of observational data were gathered. Eighteen patients and 15 family members were interviewed. Analysis uncovered two contrasting categories: (a) disconnected communication and (b) family influence quality. The findings of our study demonstrated that most patients and families perceived staff communication as disconnected and inadequate, which constrained them from engaging in care processes or decision-making. However, when family felt empowered and participated in patient care, the quality of health care was enhanced. Healthcare professionals can use these findings to make informed evidence-based changes to the way they practice and communicate to ensure family participation in patient care is optimised in the acute care setting.

Exercise physiology in aged care: Perceptions and acceptability from the perspectives of family members and care staff in the residential aged care environment.

As we age, maintaining physical functionality is important with respect to wellbeing and healthy ageing. For older adults with dementia this may be difficult, particularly in the residential aged care environment. This article reports the qualitative examination of an Exercise Physiologist-delivered exercise programme for residents with dementia. Perspectives related to the perceived impact and acceptability of the programme, as well as barriers to implementation, and delivery of exercise to residents, were sought from family members and care staff through semi-structured interviews. Benefits related to physical and social factors were identified, and perceptions related to who might benefit from exercise were changed as a result of observing residents participate in the programme. These findings support the notion that an Exercise Physiologist-delivered exercise programme, with a person-centred approach, can contribute to improved functionality for residents with dementia.

The Motivations and Consequences of Dying at Home: Family Caregiver Perspectives

Although ample research suggests that individuals prefer to die at home, the realities of a home death experience, from the perspective of family members, are not well understood. The following study addresses this gap in knowledge via a narrative analysis about the process of dying at home. Five family caregivers participated in semistructured interviews about their experiences witnessing and supporting the end-of-life process of an older family member who died at home. Their stories paint a vivid picture about the motivations and consequences of the experience, including themes such as caregivers’ immense feelings of uncertainty regarding their caregiving abilities and decision making, the significance of the home environment as a symbol of comfort and security, the influence of family and social networks, and “dying well” as a social justice issue. Overall, the caregivers’ narratives support the notion that being at home is considered an essential aspect of ”dying well.” However, the narratives also demonstrate that dying at home presents many challenges for family members, especially to those with limited resources and social support. Thus, the authors caution against viewing the home death as a proxy for a good death.

Social support network of family members of abused children and adolescents: Perspectives and possibilities.

To analyse the network of care and social support from the perspectives of family members of children and adolescents who have been abused. The theoretical-methodological background of the ecological model for understanding violence and the Paradigm of Complexity provide a broad perspective of violence. The paradigm considers all aspects that constitute a phenomenon as well as particular features. Qualitative research based on the Paradigm of Complexity, developed by Edgar Morin, the primary philosopher. We have adhered to the COREQ Checklist guidelines for qualitative research. Data were collected through Minimal Maps of Personal Social Networks, and semi-structured interviews were held with 15 families who were assisted by a nongovernmental organisation in a Brazilian city. The notions of comprehension and contextualisation guided the data analysis. Two categories emerged from the data analyses: "Social isolation" and "Affective relationships needs." The maps revealed a weakened and limited network with low-density, homogeneous bonds and few significant bonds. Therefore, the network provided predominantly instrumental and material social support with few important effective relationships. The participants disclosed some strategies to empower their lives. We conclude that it is urgent to develop strategies in a broad manner to promote family empowerment, especially on education and employment dimension, and to construct supportive and respectful relationships between services and families as well. The present study contributes to international clinical nursing, especially in low- and middle-income countries, by discussing (a) looking at and caring for family members of children and adolescents who have been abused in a contextualised manner; (b) family empowerment, which enables them to have access to healthier environments and to educational/employment opportunities; and (c) broad comprehension of health care among the family members, which provides perspectives not only for looking at violence but also for strengthening supportive social relationships.

Supportive and palliative care in people with cirrhosis: International systematic review of the perspective of patients, family members and health professionals

People with cirrhosis have unmet needs, which could benefit from a palliative care approach. Developing effective services needs to be based on evidence from those with personal experience. This review aims to explore; patient and family perspectives of perceived needs including communication; health professionals' perspectives on delivery of care and improving palliative care between specialities. A literature search was conducted in Medline, Embase and CINAHL using key words reporting on the perspectives of patients with liver cirrhosis (18 years and over), family members or health professionals on the provision of care in liver cirrhosis. Study quality was assessed using the Mixed Methods Appraisal Tool. Qualitative and quantitative findings were grouped together according to the main relevant themes identified. Nineteen research studies predominantly from high-income Western countries were identified, with a total sample consisting of 1,413 patients, 31 family carers and 733 health professionals. Patients and family members had limited understanding of cirrhosis or its impact. They wanted better information about their disease, its treatment and help with psychological and practical needs. Health professionals had difficulty communicating about these issues to patients and their families. General practitioners left care predominantly to the liver clinicians, who lacked confidence to have discussions about prognosis or future care preferences. The role of palliative care was recognised as important in caring for this group through earlier integration with liver and community services. Health professionals need support to improve their communication with patients, to address patients' broader needs beyond medical treatment and to develop new models to improve palliative care coordination between different medical specialities. Future research should focus on developing communication aides, testing existing tools to identify suitable patients for supportive care and exploring robust ways of evaluating supportive care interventions, with more studies needed from middle- and low-income countries. Registration number: PROSPERO CRD42017064770. Patients and their families had a poor understanding of advanced liver disease and its impact on them. They need more information about the treatments they receive and how to get practical and psychological support. Liver specialists and GPs found it difficult to talk to patients and their families about the seriousness of advanced liver disease and the lack of healthcare options available to them if their condition gets worse. All doctors and nurses involved in the care of patients with advanced liver disease recognise that palliative and supportive care have an important role in improving patient care.

Collective entity resolution in multi-relational familial networks

Entity resolution in settings with rich relational structure often introduces complex dependencies between co-references. Exploiting these dependencies is challenging—it requires seamlessly combining statistical, relational, and logical dependencies. One task of particular interest is entity resolution in familial networks. In this setting, multiple partial representations of a family tree are provided, from the perspective of different family members, and the challenge is to reconstruct a family tree from these multiple, noisy, partial views. This reconstruction is crucial for applications such as understanding genetic inheritance, tracking disease contagion, and performing census surveys. Here, we design a model that incorporates statistical signals (such as name similarity), relational information (such as sibling overlap), logical constraints (such as transitivity and bijective matching), and predictions from other algorithms (such as logistic regression and support vector machines), in a collective model. We show how to integrate these features using probabilistic soft logic, a scalable probabilistic programming framework. In experiments on real-world data, our model significantly outperforms state-of-the-art classifiers that use relational features but are incapable of collective reasoning.

Family perception of and experience with family presence during cardiopulmonary resuscitation: An integrative review.

The objective was to consider family presence during resuscitation (FPDR) from the perspective of the family member. FPDR has been a topic of interest internationally since the first report of this practice more than 25years ago. Worldwide, many studies have provided insight into the perspective of healthcare professionals (HCPs); however, there is limited research on the perspective and experiences of family members. An integrative review was conducted. An electronic database search was conducted for the years from 1994-2017. The Cumulative Index of Nursing and Allied Health Literature (CINAHL), PyschINFO, Academic Search, SocINDEX, PubMed, ProQuest databases and Google Scholar were searched. Search terms were family perceptions, family presence and resuscitation. Twelve reviews met inclusion criteria. Findings suggest that family members view family presence as a fundamental right. Family members involved in a FPDR experience reported that their presence benefitted the patient and healthcare team. In an international sample of studies, family presence overall was viewed positively by family members and they voiced wanting to be given an option to be present during a loved one's resuscitation. Findings support that family members' desire for FPDR; however, the literature reflects that HCPs do not always embrace the practice of FPDR. Stronger educational preparation of nurses and other HCPs related to FPDR is warranted. Policy initiatives include the formulation of policies that allow family presence during resuscitation of a family member. The findings are relevant for a clinical practice that promotes a more family-centred approach to allowing FPDR. Creating policy and providing FPDR education for HCPs based on evidence provide more consistency in clinical practice and help to eliminate the moral distress experienced by clinical nurses forced to make difficult decisions during a stressful event.

Restraint interventions in people with moderate to profound intellectual disabilities: Perspectives of support staff and family members.

BackgroundDue to incompatibilities in communication, it is key that family members and support staff can take the perspective of people with moderate to profound intellectual disabilities (ID) whilst putting aside their own perspectives.MethodTen vignettes describing types of restraint interventions (RIs) were presented to 20 unique pairs of support staff and family members related to individuals with moderate to profound ID.ResultsIn taking their own perspective, more than half of the support staff and family members perceived all RIs as involuntary and severe. In contrast, when asked to put themselves in the position of the client/family member, only three RIs were considered involuntary by a majority of support staff and family members.ConclusionsThese results indicate that support staff and family members can take into account the perspective of people with moderate to profound ID in the evaluation and consideration of involuntary care.