Experiences Of Family Members Research Articles

Transpersonal care through Reiki: Experiences of family members of children with sickle cell disease

Objective: To understand the experiences of family members of children with sickle cell disease during transpersonal nursing care meetings mediated by Reiki. Materials and methods: Convergent care research, underpinned by Watson's Theory on Human Care, developed in a health facility for people with sickle cell disease in the state of Bahia, Brazil. The study was carried out from August to October 2016. Interviews with participants took place before and after six sessions of transpersonal care mediated by Reiki with seven family members. Thematic content analysis was applied to the data collected. Results: Participants realized the importance of cultivating self-recognition, identifying their fears and feelings, valuing self-care, reflecting on their health priorities and needs, and recognizing their potential for transforming their practices. After the meetings, feelings emerged towards valuing the self as a person to be cared for, reducing anxiety and stress, reconnecting with beliefs and deities, acceptance of the disease, the role of caregiver and the future, as well as better interaction with family members in order to manage conflicts harmonically. Conclusions: Transpersonal care favors nursing professionals’ autonomy to create their own way of thinking and practicing longitudinal care, which can be applied throughout the process of prevention, diagnosis and rehabilitation of the disease to achieve healing. It is up to these professionals to deepen theoretically on this approach and use the Clinical Caritas Process in the systematization of nursing care.

Well-Being Programme for Caregivers of Persons with Spinal Cord Injury

Background: SCI is a high-cost chronic disability, and it is a life-changing experience for family members and societies. For families, the unpredictable nature of the injury leads some of the members into an 'unexpected career' as family caregivers, the caregiver’s have to put enormous efforts, to provide continuous full-time caregiving for the recovery of Person with Spinal cord injury, which will affect the caregiver's physical and mental health. The current study aims to develop and test the feasibility of a well-being programme for caregivers of persons with spinal cord injury. 
 Methods/Design: The current study adopts a Quasi-experimental study design, which have three phases; the first phase is to explore the needs of the caregivers by conducting in-depth interviews with different stakeholders. The second phase is to develop a well-being programme, and checking the feasibility of the programme is the third phase by recruiting 24 caregivers. Qualitative data will be analyzed using thematic analysis, whereas quantitative data will be analyzed using appropriate parametric or non- parametric tests upon confirming normality of data distribution.
 Discussion: This study would help us to understand the psycho-social issues and unique needs of the caregivers at different time periods. It also gives information about psycho-social interventions and outcome measures for the well-being of the caregivers.

The Experience of Family Members in Long-Term Care Facilities During the SARS COV2 (COVID-19) Pandemic

In-person visits are one form of care support offered by family members for residents in a Long-term Care Facility (LTCF). Family member visitation may extend to close social relationships with the residential care staff, which can be important in managing care. The long-term care population has been significantly impacted by a high number of SARS-COV2 (Covid-19) cases in morbidity and mortality but, in-person visits were limited due the public health concern. This study aimed to describe the experience of family members of persons in LTCFs during the Covid-19 pandemic. We used an online survey of 34 questions. Forty-six family members were recruited through online caregiver support platforms, and 22 completed the survey. Average participant age was 57. Majority were female with high-moderate (M=3.48) Kessler psychological distress scores. Participants reported less frequent communication with their family members in LTCFs. Difficult to reach nursing staff, who were the primary contact, was a concern. Their preferred means of communication was the telephone followed by window visits; residents preference remained for in-person visits followed by telephone. Participants described a decrease in relationship closeness with staff and a decrease in confidence in the quality of care. These results, limited by sample size, offer a beginning insight into the importance of communication between the family member and nursing staff, including the contact frequency. Structural disparities such as LTCF nursing staff levels may partly explain these deficits in supporting families during the Covid-19 pandemic. Opportunities to support family members remain a needed focus of long-term care reforms.

The StrongerMemory Program: A Brain Health Intervention for Mild Cognitive Impairment

The StrongerMemory program is a brain health intervention targeting older adults with mild cognitive impairment (MCI). Approximately 20% of individuals over 65 years old have MCI and 38% will potentially develop dementia after 5 years of MCI onset. Participants in the 16-week StrongerMemory program practice exercises involving math, writing, and reading aloud for 20-30 minutes a day, stimulating the prefrontal cortex of the brain, which governs the brain’s ability to retrieve memories. The current research exploring participants’ experiences with the StrongerMemory program was approved by the University’s Institutional Review Board. A semi-structured interview was implemented with each participant and the interviews took about 15 to 30 minutes to complete. There was a total of 24 respondents associated with a local continuing care retirement community, each providing their verbal consent to be interviewed and recorded over Zoom. The respondents were mostly female ranging in age from 65 to 90. Most respondents reported having advanced degrees and were participating in the program on their own, with a spouse or friend. Each interview transcript was coded by at least two members of the Mason research team. Participants reported being motivated to participate in the program due to fearing memory loss because of experiences of family members and friends and others wanted to remain “cognitively fit.” Codes and themes representing participants’ perceptions and reactions to exercises and their challenges and lessons learned from their participation will be discussed, including participants feelings of being “less foggy” and better able to remember information.

Family Advocacy for Residents in Nursing Homes During the COVID-19 Pandemic

To protect one of the most vulnerable populations from COVID-19, nursing homes enacted and enforced visiting restrictions and other measures to limit the spread of this communicable disease. Family members, many of whom are former caregivers, were suddenly cut off from nursing home residents, and struggled to maintain connection with their loved ones residing in nursing homes. The purpose of this study was to describe the experiences of family members of residents in nursing homes in advocating for residents and themselves during a time of uncertainty and many challenges. This study used a qualitative descriptive approach to conduct individual interviews. Ten family members of residents of two nursing homes in a Northeastern state were interviewed by phone or videoconference using a semi-structured guide. Interviews were transcribed verbatim and analyzed using Braun and Clarke’s Reflexive Thematic Analysis. Family members expressed concerns for the lockdown’s impact on residents’ psychosocial wellbeing in addition to the potential physical dangers of COVID-19. They explored creative means of meeting needs for information and interaction, but often felt that these efforts fell short of replicating the connectedness of in-person visits. Family members identified multiple missed opportunities for involvement in care, and voiced willingness to comply with infection prevention guidelines, such as maintaining distance, to be present with residents. Our findings indicate that family members advocated for residents’ interests to ensure quality care. Future research and policy should consider family members as a potential resource for providing care and companionship during times of crisis.

Family Advocacy for Residents in Nursing Homes During the COVID-19 Pandemic

To protect one of the most vulnerable populations from COVID-19, nursing homes enacted and enforced visiting restrictions and other measures to limit the spread of this communicable disease. Family members, many of whom are former caregivers, were suddenly cut off from nursing home residents, and struggled to maintain connection with their loved ones residing in nursing homes. The purpose of this study was to describe the experiences of family members of residents in nursing homes in advocating for residents and themselves during a time of uncertainty and many challenges. This study used a qualitative descriptive approach to conduct individual interviews. Ten family members of residents of two nursing homes in a Northeastern state were interviewed by phone or videoconference using a semi-structured guide. Interviews were transcribed verbatim and analyzed using Braun and Clarke’s Reflexive Thematic Analysis. Family members expressed concerns for the lockdown’s impact on residents’ psychosocial wellbeing in addition to the potential physical dangers of COVID-19. They explored creative means of meeting needs for information and interaction, but often felt that these efforts fell short of replicating the connectedness of in-person visits. Family members identified multiple missed opportunities for involvement in care, and voiced willingness to comply with infection prevention guidelines, such as maintaining distance, to be present with residents. Our findings indicate that family members advocated for residents’ interests to ensure quality care. Future research and policy should consider family members as a potential resource for providing care and companionship during times of crisis.

Experiences of Family Members of Children with Autism

Introduction: Autism spectrum disorder is characterized by the change in the behavior-interaction-communication, with different levels of impairment. Objectives: This study aims to describe the experiences of family members of children with autism and discuss strategies to improve the quality of life of family members. Methods: A descriptive, exploratory study with a qualitative approach was carried out in a self-help association for autism, located in the city of Teresina/PI, Brazil. Data collection took place in September and October 2019 through the application of a semi-structured interview. Eighteen (18) family members of children with autism in the Association of Friends of Autistic Individuals (AMA) participated in the study. Bardin’s content analysis was the technique used for data analysis. Results: The results showed experiences of negative feelings on the part of family members who lived with autistic children, such as frustration and pain, but also positive feelings of affection and dedication and state of neutrality. The daily life of family members involved the experience of difficulties due to the care of the autistic children, in addition to the lack of information regarding different cases of autism. Therefore, it is necessary to include family members and children in support networks with the objective of making them a part of society with the help of the multidisciplinary team. Conclusion: The present research showed that the experiences of family members of children with autism are difficult at first, but with daily learning and interaction, they become rewarding. The study also reinforces the importance of team in the care of autistic children and highlighted the relevance of improving the family’s quality of life, which can also reflect on the quality of care of that individual.

Dementia and sexuality in long-term care: Incompatible bedfellows?

Despite the recognized benefits of sexual expression and its importance in the lives of people living with dementia, research demonstrates that there are multiple barriers to its positive expression (e.g., expression that is pleasurable and free of coercion, discrimination, and violence) in RLTC homes. These barriers constitute a form of discrimination based on age and ability, and violate the rights of persons living with dementia to dignity, autonomy, and participation in everyday life and society. Drawing on a human rights approach to dementia and sexual expression, we explored the experiences of diverse professionals, family members, and persons living with dementia with explicit attention to the ways in which macro-level dynamics are influencing the support, or lack thereof, for sexual expression at the micro level. Focus groups and in-depth interviews were conducted with 27 participants, and the collected data were analyzed thematically. While all participants acknowledged that intimacy and sexual expression of persons living with dementia should be supported, rarely is such expression supported in practice. Micro-level factors included negative attitudes of professionals toward sexual expression by persons living with dementia, their discomfort with facilitating intimacy and sexual expression in the context of their professional roles, their anxieties regarding potential negative reactions from family members, and concerns about sanctions for failing to prevent abuse. In our analysis, we importantly trace these micro-level factors to macro-level factors. The latter include the cultural stigma associated with dementia, ageism, ableism, and erotophobia, all of which are reproduced in, and reinforced by, professionals’ education, as well as legal and professional standards that exclusively focus on managing and safeguarding residents from abuse. Our analysis demonstrates a complexity that has enormous potential to inform future research that is critically needed for the development of educational initiatives and to promote policy changes in this area.

The Impact of Robotic Companion Pets on Depression and Loneliness for Older Adults with Dementia During the COVID-19 Pandemic.

Purpose: Differences in depression and loneliness, during the COVID-19 pandemic, for older adults with mild to moderate dementia living in residential care after interacting with a robotic companion dog or cat were explored. Experiences of family members and professional caregivers were also examined. Design: This study used a mixed research design with pre- and post-questionnaires on depression and loneliness. Method: Quantitative data exploring the impact of companion pets on depression and loneliness were collected from participants pre-intervention and at 3- and 6-week intervals. Qualitative data were collected during the 6-week study period, permitting researchers to explore the impact of robotic companion pets on participants, family members, and professional caregivers. Findings: Results indicated depression (χ2F(2) = 21.29, p < 0.001) and loneliness (χ2F(2) = 21.11, p < 0.001) improved. Moreover, participants were engaged with their companion pet, providing meaningful, activity and positive experiences. Conclusions: Robotic companion pet therapy, a holistic, nonpharmacologic animal-assisted therapy (AAT), changed the AAT landscape at the study site and provided an alternative option to live pet therapy during COVID-19. Participant interactions with their robotic companion pets enhanced their well-being and quality of life, especially during stringent COVID-19 restrictions and social isolation.

Links between marital and parent–child relationship in African American families: A dyadic approach.

Grounded in a family systems perspective, we used a dyadic approach to examine longitudinal associations between parents' marital relationship qualities (marital conflict and marital satisfaction) and parent-child warmth and conflict in a sample of 180 African American families with adolescent-age children. We also tested whether these associations varied as a function of family economic strain, parents' depressive symptoms, and parent and youth gender. Results from longitudinal, Actor-Partner Interdependence Models (APIMs) showed significant actor and partner effects for associations between marital satisfaction and parent-child relationships reflecting both spillover and compensation processes. With respect to compensation, on occasions when fathers experienced lower marital satisfaction than usual (i.e., compared to their own cross time average), youth reported more relationship warmth with mothers than usual. Spillover effects were moderated, such that, on occasions when parents experienced more marital satisfaction than usual, adolescents reported more warmth, but only on occasions when parents also experienced lower economic strain than usual. Neither parents' depressive symptoms nor youth gender moderated associations between marriage and parent-child relationships. Results highlight interconnections between marital and parent-child relationships within African American families, the importance of assessing experiences of multiple family members, and the role of family contextual factors for family systems processes in this sociocultural group. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

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

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

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

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

The Experiences of Family Members of COVID-19 Patients in Iran: A Qualitative Study.

Being diagnosed with coronavirus disease-19 (COVID-19) usually causes emotional stress for patients and their families. Understanding the challenges faced by family members of COVID-19 patients is necessary to provide holistic family centered care to support patients and families on their journey to recovery from COVID-19. The aim of this study was to explore the experiences of Iranian family members of COVID-19 patients. This qualitative study was performed using the conventional content analysis approach in 2020 in Gorgan, northeastern Iran. Using a purposive sampling 15 family members of inpatient and outpatient COVID-19 patients who were involved in caring of their patients were selected. Data were collected using in-depth and semi-structured interviews and were analyzed by Graneheim and Lundman's content analysis method with the support of MAXQDA software. Family members' experiences of COVID-19 patients were categorized into two main themes, four category and 10 subcategories. One of the main themes was "psychosocial distress", with two categories of "uncertainty of the disease" and "perceived psychosocial burdens". Another main theme was "adaptation strategies", with the two sub-categories including "adaptative care" and "trusting God". The results of this study provide a broad range of context-specific challenges faced by family members of Covid-19 patients. It is essential for healthcare providers to be aware of the complex psychological and social conditions of families of Covid-19 patients. Hence, healthcare managers and policymakers should implement preventive and supportive programs at all levels in hospitals and community and provide supportive strategies to reduce or eliminate their challenges.

Patient and Family Perspectives on Early Mobilization in Acute Cardiac Care

BackgroundEmerging evidence indicates that engaging family members in early mobilization may benefit both patients and family members. However, little is known about the effect of patient and family-member experience and perspectives on mobilization in acute cardiac care. Our goal was to assess the perspectives and experience of patients and their family members regarding early mobilization in acute cardiac care, to better understand patient-related barriers to mobilization and assist in the development of mobilization strategies that increase family-member engagement in care. MethodsPatient and family-member surveys were developed to assess attitudes and knowledge about mobilization, family-members’ roles in providing care, and mobilization care the patients received. Surveys were distributed to patients and their family members over a 4-month period. ResultsA total of 101 participants completed the survey (patients, n = 78; family members, n = 23). Most patients (n = 54; 69.2%) agreed or strongly agreed that early mobilization should be routinely performed. Of 72 patients who underwent early mobilization, 60 (83.3%) felt that mobilization helped their recovery. The majority of family members were interested in being involved with mobilization (n = 19; 82.6%). One quarter of family members felt that mobilizing their relatives too soon after admission was potentially dangerous (n = 6; 26.1%). ConclusionsMost patients wish to be mobilized early after admission, and family members want to participate in mobilization efforts. These findings should inform efforts to overcome patient- and family-related barriers to mobilization.

Experiences of Family Members in Caring of Stroke Patients: A Case Study in the Border Provinces of the Upper Northeast of Thailand

BACKGROUND: Stroke patients require continued care, which makes stroke family caregivers unlikely to anticipate the end of home health-care service. AIM: The objectives of this study aimed, therefore, to seek understanding of stroke family caregivers in relation to caring experience, problems and barriers, and needs of family caregivers in the context of border provinces of the upper northeast of Thailand. METHODS: The current study was based on the phenomenological approach. The study samples included 16 informants. Data collection, conducted between February and August 2020, was performed using in-depth interviews. The collected data then were analyzed using the van Manen’s approach. RESULTS: Experiences of the stroke family caregivers were reflected and fell in van Manen’s 4 points under 12 thematic categories: (1) Lived body including lack of knowledge, fatigue, and sense of obligation; (2) lived time including paying gratitude, uncertainty, and paying retribution; (3) lived space including just long distance, being isolated in the wide world and living in a remote area; and (4) lived relation including blood thicker than water, community network, and needs from health-care services. CONCLUSION: The findings may be exploited to develop health service preparedness for health outcome promotion for stroke patients and stroke family caregivers.

Religious-spiritual experiences of family members and caregivers of children and adolescents with cancer.

This integrative literature review aimed to identify the religious and spiritual experiences of family members and caregivers of children and adolescents with cancer. Through systematized searches in the databases/libraries CINAHL, PsycINFO, Pubmed, SciELO, and Lilacs, 69 articles produced between 2010 and 2020 were retrieved. There was a predominance of studies with parents developed in hospital facilities. The caregivers' religious and spiritual experiences helped them to cope with childhood cancer, especially in maintaining hope, reducing stress and anxiety symptoms, as well as in providing psychological and social support. Negative outcomes such as questioning faith, the feeling of punishment, and disruption with the religious and spiritual group were also perceived. It is recommended to include religiosity and spirituality for the provision of more humanized and comprehensive care, as well as further investigation of the negative experiences regarding religiosity and spirituality in this public.

Experiences of families of public safety personnel: a systematic review protocol of qualitative evidence

BackgroundPublic safety occupations are well-recognized to be dangerous and stressful. Despite recent attention on post-traumatic stress injuries among public safety personnel, there has been considerably less attention paid to the ongoing ways in which the risks and requirements associated with those occupations shape family life, and how families respond and adapt to those lifestyle dimensions. This systematic review aims to understand how day-to-day family life is affected and shaped when a family member works in a public safety sector, such as fire, police, paramedic, corrections, and emergency communications.MethodsQualitative studies that examine the experiences of families or family members of public safety personnel will be included in this review, with no date or language restrictions. An initial search of Embase and CINAHL will be conducted, followed by an analysis of text words contained in the title and abstract, and of the index terms used to describe the articles. Databases to be searched for published studies include MEDLINE, Embase, Web of Sciences, CINAHL, PsycINFO, and Sociological s. Titles and abstracts will be screened by two independent reviewers. The full texts of selected studies will be assessed in detail, and findings and their illustrations will be extracted and aggregated. Any disagreements between the reviewers that arise at each stage will be resolved through discussion, or by a third reviewer. Further analysis of the synthesized findings will be informed by family systems theory.DiscussionThe ways that occupational risks and requirements shape family life have been better investigated within other high-risk occupation groups, which has led to productive advancements in organizational policies and supports in the respective sectors. An understanding of the experiences which typify family life ongoing within PSP sectors is a critical gap in the development of meaningful family-informed occupational initiatives and supports.Systematic review registrationSubmitted to PROSPERO for systematic review registration: CRD42020208126

“Be Their Advocate”: Families’ Experience with a Relative in LTC during the COVID-19 Pandemic

Abstract Shortly after the COVID-19 pandemic was declared, strict visitor restrictions were issued for long-term care facilities (LTCFs). A year later, restrictions are still in place and they continue to impact family members who have limited or no in-person contact with their relative in LTCFs. The goal of this qualitative longitudinal focused ethnography was to understand the experience of family members who have a relative in a LTCF where visiting has been restricted during the pandemic. Seventeen family members participated in two interviews that were 6 months apart. Data analysis highlighted five key drivers, defined as the workforce, communication deficits, characteristics of care, public health directives, and autonomy of relative which in turn resulted in three main themes: psychological distress, surveillance, and visiting challenges. This study provides a glimpse into the difficult experiences of families with a relative residing in a LTCF in the province of New Brunswick.

End-of-life transitions for family member on the solid tumour oncology ward: the 3 Wishes Project

ObjectivesAlthough death is not uncommon for hospitalised patients with cancer, there are few interventions in oncology that are designed to create a dignified, compassionate end-of-life (EOL) experience for patients and...

Voices from the Pandemic: A Qualitative Study of Family Experiences and Suggestions regarding the Care of Critically Ill Patients

RationaleIntensive care unit (ICU) visitation restrictions during the coronavirus disease (COVID-19) pandemic have drastically reduced family-engaged care. Understanding the impact of physical distancing on family members of ICU patients is needed to inform future policies.ObjectivesTo understand the experiences of family members of critically ill patients with COVID-19 when physically distanced from their loved ones and to explore ways clinicians may support them.MethodsThis qualitative study of an observational cohort study reports data from 74 family members of ICU patients with COVID-19 at 10 United States hospitals in four states, chosen based on geographic and demographic diversity. Adult family members of patients admitted to the ICU with COVID-19 during the early phase of the pandemic (February–June 2020) were invited to participate in a phone interview. Interviews followed a semistructured guide to assess four constructs: illness narrative, stress experiences, communication experiences, and satisfaction with care. Interviews were transcribed verbatim and analyzed using an inductive approach to thematic analysis.ResultsAmong 74 interviewees, the mean age was 53.0 years, 55% were white, and 76% were female. Physical distancing contributed to substantial stress and harms (nine themes). Participants described profound suffering and psychological illness, unfavorable perceptions of care, and weakened therapeutic relationship between family members and clinicians. Three communication principles emerged as those most valued by family members: contact, consistency, and compassion (the 3Cs). Family members offered suggestions to guide clinicians faced with communicating with physically distanced families.ConclusionsVisitation restrictions impose substantial psychological harms upon family members of critically ill patients. Derived from the voics of family members, our findings warrant strong consideration when implementing visitation restrictions in the ICU and advocate for investment in infrastructure (including staffing and videoconferencing) to support communication. This study offers family-derived recommendations to operationalize the 3Cs to guide and improve communication in times of physical distancing during the COVID-19 pandemic and beyond.