Perspective Of Family Members Research Articles

Exploring the process of information sharing in an adult intensive care unit: an ethnographic study

ABSTRACT Information sharing, a component of patient and family engagement (PFE), is an important process that may contribute to intensive care unit (ICU) quality of care. Yet, virtually no studies explore how the process of information sharing unfolds in the ICU from the interprofessional team and family member perspectives. To better understand the process of information sharing, we conducted ethnographic fieldwork in a 20-bed medical ICU, focusing on behaviors and interactions of the interprofessional team and family members (May 2016 – October 2016). We completed 17.5 observation hours, 6 shadowing sessions, and 12 semi-structured interviews with 17 total participants. We used thematic content analysis and iterative inductive coding to identify three themes about the information sharing process: 1) family factors (health literacy and past experience with the ICU environment) influence information sharing; 2) clinicians strategies can support engagement in the process of information sharing (assessing families’ need for information, understanding a families’ hope, using rounds as an opportunity for information sharing); 3) the process of information sharing allows for trust building between families and the ICU team. Our findings suggest that information sharing is a crucial process that may serve as a catalyst for effective patient and family engagement in the ICU.

Is Coping with Stigma by Association Role-Specific for Different Family Members? A Qualitative Study with Bipolar Disorder Patients\u2019 Relatives

Trying to cope with stigma by association (SBA) often results in behaviors leading to social isolation and withdrawal. This study aimed at exploring the stigma-related experiences of family members of persons living with bipolar disorder (PW-BD). A semi-structured interview was conducted with relatives of PW-BD. Open-ended questions addressed three issues: awareness of public stigma of bipolar disorder, experiences of associative stigma, and ways of coping with experiences of SBA. Data were collected from a purposive sample of 21 family members. Experiences of SBA were specifically related to the different family roles. Parents had to deal with responsibility, partners with the choice of staying or not, and siblings with “a sort of duty.” These specific prejudices enhanced specific coping strategies. This is the first study to highlight specific issues and coping from the perspective of family members. Based on these findings, specific targeted interventions could be developed.

The meaning of social support for persons with serious mental illness: A family member perspective.

Objective: Social support is essential to the health and well-being of persons with serious mental illness (SMI), and family members are a primary source of this support. Despite the primary role of family in the lives of persons with SMI, family is an understudied source of support. This study investigated the types of social support beneficial for persons with SMI from the perspective of family members. Method: Participants were 14 adult family members recruited from a Bay Area National Alliance on Mental Illness who provided regular support for a family member with SMI. Focus group data was analyzed using NVivo10 and consensual qualitative research. Results: Results revealed five support categories: (a) person-centered support, (b) autonomy support, (c) community participation support, (d) health management support, and (e) day-to-day living support. Discussion: Participants described family supports that are conceptually distinct from traditional models of social support and uniquely tied to SMI-related stressors. Findings are also aligned with the mental health recovery model and self-determination theory. Conclusion: Results advance our understanding of SMI-specific types of social support by describing five support categories grounded in the voices of family members supporting a loved one with SMI. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

A question of perspective—parenting and other matters in the lives of people with learning disabilities

A question of perspective—parenting and other matters in the lives of people with learning disabilities

Speaking Up: How Family Members Advocate for Relatives Living with a Mental Illness.

Consumers with a mental health condition often feel powerless and overwhelmed in interactions with mental healthcare providers. Consumer self-advocacy and advocacy actions undertaken by their family members on the behalf of their relative contribute to a sense of empowerment for both consumers and their family members. This qualitative study explored family member perspectives of advocacy actions they took on behalf of their relatives and themselves. Data analysis of interviews with 20 family members, including parents, partners/spouses, siblings, and adult children, yielded three themes of family member advocacy actions: advocating for a relative's mental healthcare, normalizing mental illness, and engaging in social and political actions. Advocacy frameworks offer useful guidelines for speaking up for individuals who live with a mental illness.

MEANING OF CARE FOR RESIDENT OLDER ADULTS, FAMILY MEMBERS AND PROFESSIONALS WORKING IN LONG-TERM CARE INSTITUTIONS

ABSTRACT Objective to understand the meaning of care from the perspective of resident older adults, family members and professionals from Long-Term Care Institutions for Older Adults. Method a descriptive and exploratory study with a qualitative approach, developed with 14 resident older adults, 35 family members and 41 professionals from Long Term Care Institutions for Older Adults, located in the city of Florianópolis, Brazil. The data were collected between May 2017 and January 2018, being organized through the Atlas.ti software for the analysis of qualitative data and analyzed according to the content analysis method proposed by Bardin, in the light of the Theory of Social Representations. Results for the older adults, care was linked to three main dimensions: technical care related to the institution, family care, and self-care. The meaning of care from the perspective of family members was related to the moment experienced with the institutionalization of the aged family member, mainly characterized by the dimensions of affective care, when providing comfort and technical care. For the professionals, technical care was related to the affective character. Conclusion care could be understood in different ways, from different perspectives, but it also made it possible to identify points of synchrony among the participants.

Needs of patients in palliative care from the perspective of family members

Introduction: Every person is a multidimensional being and certain needs arise from each dimension. In palliative care, the emphasis is on alleviating the physical, emotional, spiritual, and social needs of patients through a holistic approach. The aim of the study was to determine how family members recognize and experience the needs of their family members who are in palliative care. Methods: A qualitative research method was used. Data were obtained through interviews. Coding determined categories and codes that were later linked into grounded theory. For the purposes of the research, a semi-structured interview was conducted via the Google Meet application. The study involved 4 participants. Results: The analysis of the interviews defined four categories that talk about the segments of holistic care: physical, psychological, social and spiritual needs. The presented codes are supported by the statements of the participants. Discussion: Family members of patients in palliative care recognize the needs arising from all four dimensions of human – physical, psychological, social and spiritual needs, but in practice, the emphasis is still on caring for physical needs. Conclusion: The best results of palliative care are recognized in taking care of the physical needs of patients, especially pain, but more effort should be made in educating nurses and organizing changes to completely implement holistic nursing care in which psychological, social and spiritual needs are also taken care of

Beyond the Patient: A Mixed-Methods Inquiry Into Family Members' Involvement in the Treatment of Parkinson's Disease to Target Third-Party Disability.

Purpose Family members of people with Parkinson's disease (PD) may experience third-party disability, manifesting as difficulty managing communication breakdowns and changed relationships influenced by communication disorders. This study examined family involvement in therapy to address third-party disability from the perspective of family members of people with PD and speech-language pathologists (SLPs). Method A mixed-methods design was used with two phases of data collection. In Phase 1 qualitative interviews, nine family members shared their perspectives about their involvement in therapy. In Phase 2, a survey was developed from Phase 1 data to gather data from SLPs (N = 110) on their clinical practices involving family members. Results Family members and SLPs agreed that when family were involved in therapy, it was primarily to support therapy exercises for the person with PD. Many SLPs reported providing supportive activities for family members. However, qualitative data from family members suggested that the limited involvement they had in therapy did not sufficiently meet their unique needs resulting from communication changes with the person with PD and other related challenges. Constraints influencing family member involvement included insurance billing regulations, privacy laws for patients, and family members' availability. Conclusions While some families and SLPs reported efforts to specifically include families and address their needs in therapy, these practices were inconsistent and, from families' perspectives, insufficient to meet their own needs. Future research should consider family-centered approaches that involve family members in speech-language therapy to enhance their daily lives, along with persons with PD.

“Achieve the best while rushing against time”: A grounded theory study on caring for low-income immigrant cancer patients at end of life

Background: Between 2000 and 2020, Europe experienced an annual net arrival of approximately 1.6 million immigrants per year. While having lower mortality rates, in the setting of severe diseases, immigrants bear a greater cancer-related burden due to linguistic and cultural barriers and socio-economic conditions. Professionals face a two-fold task: managing clinical conditions while considering the social, economic, cultural, and spiritual sphere of patients and their families. In this regard, little is known about the care provision to low-income immigrant cancer patients in real contexts. Aim: To investigate the perspective of professionals, family members, and stakeholders on the caring process of low-income immigrant cancer patients at the end of life. Design: A Constructivist Grounded Theory study. Setting/participants: The study, conducted at a Hospital in Northern Italy, involved 27 participants among health professionals, family caregivers, and other stakeholders who had recently accompanied immigrant cancer patients in their terminal phase of illness. Results: Findings evidenced that professionals feel they were not adequately trained to cope with immigrant cancer patients, nonetheless, they were highly committed in providing the best care they could, rushing against the (short) time the patients have left. Analyses evidenced four main categories: “providing and receiving hospitality,” “understanding each other,” “addressing diversity,” and “around the patient,” which we conceptualized under the core category “Achieve the best while rushing against time.” Conclusions: The model reveals the activation of empathic and compassionate behavior by professionals. It evidences the need for empowering professionals with cultural competencies by employing interpreters and specific training programs.

Successful Informal Help-Seeking and Resolution of Elder Family Financial Exploitation: A Case Study

Effective interventions are needed to address elder family financial exploitation (EFFE), one of the most prevalent types of elder abuse globally. This poster examines the unique and critical help-seeking role informal family support can play when faced with EFFE. We present a holistic case study that offers an understanding of one family’s successful help-seeking and resolution of the EFFE situation. The family drew on internal family and community supports and did not seek formal elder abuse services. The case stood out as unique relative to 23 family’s help-seeking attempts in a larger study of the meaning and experience of EFFE from the perspective of concerned family members (non-abusing/non-victims). The case summary and analysis are based on an in-depth interview narrative reflecting the subjective experience of a concerned family member who was directly involved in the EFFE situation (in-law relative to both the older victim and the perpetrator). Study findings reveal 5 interwoven themes related to help-seeking processes and outcomes: 1) honoring the victim’s wishes, 2) providing support and accountability for perpetrator, 3) restoring family relationships and functioning, 4) maintaining internal (family-based) control, and 5) engaging in family problem solving processes. The family’s help-seeking demonstrated three distinctive features: a) embracing their informal social support role, b) the interdependence of family members, and c) restorative justice principles. The findings raise questions about broadening the scope and continuum of EFFE intervention research and practices to recognize and support informal social intervention.

Helpful factors of therapy with families/carers of individuals affected by cancer

Aim:The purpose of this study was to identify what family members and/or carers of individuals affected by cancer found helpful in therapy.Method:Qualitative semi-structured interviews were conducted with six individuals who had completed psychological therapy within a charitable organisation for people affected by cancer. The data collected were thematically analysed.Results:Participants reported a range of helpful processes in therapy: talking and being open with someone outside of the family; building a trusting and safe relationship with a non-judgemental therapist who listened; normalisation of their experience as the therapist had specialised knowledge; being supported and strengthening their resources to cope with overwhelming and distressing feelings.Implications:These findings suggest that the unique perspectives of carers and/or family members can increase our understanding of the helpful processes of individual psychotherapy in cancer care settings and improve our delivery of services to this client population.

Dementia families: Relinquishing home care to aged care services: Guilt, traumatic loss and growth.

Few studies explore both negative and positive perspectives of family members who relinquish home care of a family member with dementia for systemic aged care. This phenomenological study sought the 'lived' experience of relinquishing the role of home carer for a family member with mild to severe dementia to others within care home settings, by seeking to understand the impact of aged care on family members' psychological well-being. Using semi-structured interviews, positive and negative subjective interpretations from 17 families (27 individuals) provided data for analysis, following the protocols of interpretative phenomenological analysis. One superordinate theme, mistrust/integrity, overarched oscillation between mistrust of the aged care system and a struggle for personal integrity in caring for these participants. Two sub-themes emerged: intrinsic trauma and extrinsic trauma. Intrinsic trauma explained feelings of helplessness and guilt, and internally directed responses that triggered a retreat into submission ultimately reducing the participant's role in advocacy. Extrinsic trauma represented externally directed responses such as anger and frustration, where family members became more engaged and watchful and recognised a need for vigilance and advocacy. Paradoxically oscillating between these personal struggles, participants exhibited growth, a third theme that defined assertive/advocacy utilised to nurture hope, gratitude, courage and change. Family members experienced complex distress as they relinquished home care to others within systemic aged care for a member with dementia. By developing adaptive responses as appropriate, for example, advocating for their family member or accepting compliance with treatment, collaborative care between family and staff created better outcomes for the family member with dementia.

Facilitators for improvement of psychiatric services and barriers in implementing changes: From the perspective of Finnish patients and family members

The need for psychiatric patients and their family members to have access to quality user-friendly services has been studied for decades, yet few improvements have been made in treatment services. This study aims to explain how patients and family members have experienced facilitators of improvements, and their thoughts about barriers in the implementation of changes. An explanatory qualitative design was adopted. Data were collected using semi-structured interviews with eight focus groups made up of a total of 35 participants from mental health associations in Finland. The Theoretical Domains Framework guided the deductive data analysis. The Consolidated Criteria for Reporting Qualitative Studies (COREQ) was followed in the study. Participants in patient and family member associations had similar experiences and thoughts about facilitators of improvements in psychiatric services and barriers in the implementation of changes. For example, both participant groups experienced that promoting more positive roles of professionals could facilitate improvements in psychiatric care. On the other hand, a lack of theoretical competence and interpersonal skills of professionals could hinder change. We conclude that many of the facilitators that patients and families suggested could be addressed by enhancing collaboration and communication, having a more person-centred approach, focusing on recovery throughout the course of care, and acknowledging staff's well-being at work. Second, the barriers to implementing changes centre around the limited knowledge and skills of staff, and a paternalistic system that focuses on managing risk and administering treatment.

The ethical implications of genetic testing in neurodegenerative diseases: A systematic review.

Availability of genetic testing in neurodegenerative disorders has developed rapidly. This growing ability is providing specific genetic information to individuals and, in turn, their families, raising ethical concerns. However, family members' perspective is a seldom-studied phenomenon. The aim of this systematic review was to describe the ethical aspect of genetic testing in neurodegenerative diseases from the perspective of at-risk family members. A systematic review of data was performed in accordance with the PRISMA statement. The data search was conducted using the CINAHL, PubMed and Scopus databases to identify original peer-reviewed studies published between January 2009 and April 2019. A total of 24 articles were selected. The data were analysed using inductive content analysis. On the basis of the analysis, four central ethical implications were identified: (i) decision-making in genetic testing as a dilemma: balance between autonomy and responsibility, (ii) the individual's right to make a voluntary and informed decision for genetic testing, (iii) conflicting emotions after knowing one's genetic status and (iv) privacy and confidentiality of genetic information: the fear of genetic discrimination and stigma. The findings of this review increase understanding about the central ethical implications of genetic testing in neurodegenerative diseases from the perspective of family members, and identify and underline outstanding needs for further research.

"Invisible Voices": A Critical Incident Study of Family Caregivers' Experience of Nursing Homes After Their Elder Relative's Death.

The literature provides few examples of family caregivers' retrospective evaluation of nursing home services. This study aimed at analyzing narratives of Italian family caregivers of elders who experienced nursing home placement. Data were gathered through in-depth interviews with family members after their relatives' death. The interviews were based on the Critical Incident Technique, which allowed the categorization of the most memorable positive and negative events from the perspective of family members of elders deceased in nursing homes. Interviews were interpreted with a phenomenologically inspired thematic analysis approach. Participants were screened for complicated grief disorder as a confounding variable in relatives' accounts of the treatment. Results suggested that positive long-term recollection of the nursing home was associated with different themes emerging from the interviews: medical reliability and expertise, active demonstrations of care that extend beyond the contract with the facility, individualized attention, responsiveness, openness to dialog with family members about routines, management of the first impression, and family engagement. Lack of professionals' expertise and medical failures, lack of care for patients' personal goods, lack of family involvement, lack of individualized attention, lack of responsiveness, poor patient surveillance, and structural limits of the facilities were the themes that were more frequently negatively associated with the nursing home experience. Focusing on the key dimensions connected to the quality of the experience of family members can enrich the quality of existing nursing home services and allow healthcare policymakers and managers to design better facilities for the patients.

Abstract 13410: Patient and Family Perspectives of Early Mobilization in Acute Cardiovascular Care

Introduction: Early mobilization (EM) is safe, feasible, and associated with good outcomes in people with acute CV disease. While studies have explored the perspectives of care providers on mobilization, little is known about patient and family member perspectives and experience with mobilization. Methods: Patient and family member surveys were developed using previously validated surveys (Family Satisfaction with Care in the ICU and the Patient Mobilization Attitudes & Beliefs survey). The survey assessed attitudes toward and knowledge of mobilization, the family member’s role in providing care and the mobilization care they received. Surveys were distributed to patients and their family members in an acute CV unit of a tertiary care centre in Montreal, Canada over a 4-month period. Results: 102 participants completed the survey (78 patients and 24 family members). Most patients (N=54; 69.2%) agreed or strongly agreed that EM should be routinely performed, although nearly half of the patients (N=37, 47.4%) felt that mobilization soon after admission was potentially dangerous. Out of 64 patients who underwent EM, 60 (93.8%) felt that mobilization helped their recovery (Figure). 35 patients (54.7%) felt that family member participation helped their mobilization. Family members included 12 (50.0%) spouses/partners, 10 (41.7%) children, 1 (4.2%) siblings, and 1 parent (4.2%). Most family members felt that mobilizing their relatives too soon after admission was potentially dangerous (N=17, 70.8%). However, family members were interested in being involved with mobilization (N=22; 91.7%) and only a few felt that mobilization should not be routinely performed (N=2; 8.3%). Conclusion: Patients felt that EM helped with their recovery process. Family members were interested in being involved in mobilizing their relatives. Our findings should inform efforts to overcome patient and family-related barriers to mobilization and design an EM program for acute CV care.

A relação entre um Centro de Atenção Psicossocial e as famílias de usuários do serviço: percepção dos familiares

Objetivou-se descrever a relação entre os trabalhadores de um Centro de Atenção Psicossocial e a família dos usuários deste serviço, sob a perspectiva dos familiares. Trata-se de uma pesquisa qualitativa, exploratória-descritiva, realizada em um Centro de Atenção Psicossocial. Participaram cinco familiares cuidadores principais, a partir de entrevistas semiestruturadas, realizadas no período de outubro a novembro de 2018. A análise dos dados se deu por meio da técnica Análise Temática de Conteúdo. A análise resultou em duas categorias temáticas: A construção de vínculos família - serviço; e A família, o usuário e os benefícios do Centro de Atenção Psicossocial. Dentre os aspectos mencionados pelos entrevistados, destacou-se uma relação permeada pelos vínculos construídos. Identificou-se nos relatos dos cuidadores principais, estratégias que possibilitam a construção de vínculos com o serviço, sendo estas, o acolhimento, a escuta qualificada durante o atendimento, a oportunidade de inserção dos familiares no desenvolvimento das oficinas terapêuticas e reuniões com a equipe e atendimento às demandas dos cuidadores, a busca ativa e a realização do grupo de familiares. Ademais, a relação foi construída a partir do diálogo, e pautada no acolhimento, escuta qualificada e estabelecimento do vínculo com a família.

The social and psychological consequences of women getting pregnant with fertility treatment: A qualitative study.

This study focuses on psychological and social problems of women getting pregnant with fertility before and after pregnancy. This study to gain a more in-depth understanding of the processes in which infertility affected the kinds of psychological and social consequences they experienced. A qualitative descriptive design was used in the study. The descriptive and thematic content analysis methods were used for the analysis of the data obtained for the study. The identified themes are as follows: (1) society's social and psychological pressure, (2) isolation from the "fertile" world, (3) effects on marital relationship, (4) perspectives of family members, (5) experiencing pregnancy. Supportive counseling provided by nurses can be an integral component of treatment in infertile women.

Elephant in the room - Family members´ perspectives on advance care planning

Objective To explore family members’ experiences of advance care planning in nursing homes. Design Individual interviews. Thematic analysis. Setting Four nursing homes in Sweden. Subjects Eighteen family members of deceased nursing home patients. Main outcome measures Family members’ experiences of advance care planning in nursing homes. Results Family members’ experiences of advance care planning in a nursing home context involved five themes: Elephant in the room, comprising end-of-life issues being difficult to talk about; Also silent understanding, e.g. patient’s preferences explicitly communicated, but also implicitly conveyed. In some cases family members had a sense of the patient’s wishes although preferences had not been communicated openly; Significance of small details, e.g. family members perceive everyday details as symbols of staff commitment; Invisible physician, supporting nurse, e.g. nurse being a gatekeeper, providing a first line assessment in the physician’s absence; and Feeling of guilt, e.g. family members wish to participate in decisions regarding direction of care and treatment limits, and need guidance in the decisions. Conclusion Our study stresses the significance of staff involving the patient and family members in the advance care planning process in nursing homes, thereby adapting the care in line with patient’s wishes, and for the patient to share these preferences with family members. Education in communication related to the subject may be important to shape advance care planning. Key points Knowledge on advance care planning (ACP) in a nursing home (NH) context from the perspective of family members is limited. Role of the nurse in ACP is seen as central, whereas physician involvement is often perceived to be lacking. Significance of small details, perceive to symbolize staff competence and respect for patient autonomy. To limit family members’ feeling of guilt, communicating end-of-life issues is important in order to align ACP with patient preferences.

Uwarunkowania kształcenia zdalnego w rodzinie w dobie COVID-19

CEL NAUKOWY: Celem artykułu jest pokazanie uwarunkowań materialnych, kompetencyjnych i interpersonalnych edukacji zdalnej w Polsce w okresie od 12 marca do przełomu czerwca i lipca 2020 r.
 PROBLEM I METODY BADAWCZE: Artykuł został napisany w ramach metodologii pedagogicznej przy wykorzystaniu metody jakościowej, która umożliwiła analizę doświadczenia konkretnych osób zaangażowanych w procesy edukacyjne w sytuacji pandemii COVID-19.
 PROCES WYWODU: Artykuł pokazuje pozytywne i negatywne aspekty nauczania zdalnego z perspektywy członków rodzin uczestniczących w Polsce w nietypowym procesie dydaktycznym, wymuszonym przez pandemię groźnej choroby.
 WYNIKI ANALIZY NAUKOWEJ: W artykule zostały pokazane materialne, kompetencyjne i interpersonalne uwarunkowania zdalnej edukacji.
 WNIOSKI, INNOWACJE, REKOMENDACJE: Z badań wynika, że edukacja zdalna w warunkach pandemii wywarła znaczący wpływ na funkcjonowanie rodzin, co wymaga dalszych badań w sytuacji przedłużającego się stanu zagrożenia z powodu COVID-19.