scholarly journals “It’s extremely hard but it’s not a burden”: A qualitative study of family caregiving for people living with dementia in Vietnam

PLoS ONE ◽  
2021 ◽  
Vol 16 (11) ◽  
pp. e0259788
Author(s):  
Huong Nguyen ◽  
Trang Nguyen ◽  
Duyen Tran ◽  
Ladson Hinton
Keyword(s):  
Family Caregivers ◽  
Family Caregiving ◽  
Help Seeking ◽  
Healthcare Providers ◽  
Structured Interviews ◽  
Resource Setting ◽  
Vietnamese Women ◽  
Low Resource Setting ◽  
The Family ◽  
Multiple Challenges

Background Vietnam is one of the fastest-aging countries in the world with a rising number of people with Alzheimer’s disease and related dementias (ADRD). Families in Vietnam provide most of the care for persons living with dementia, yet our understanding of their experiences and needs is limited. This study examined the family caregiving experience in a semi-rural region outside of central Hanoi from the perspectives of family caregivers and other key informants. Materials Semi-structured interviews were conducted with 21 key stakeholders (12 family caregivers and 9 healthcare providers and community leaders). A descriptive, thematic analysis was conducted. Results Qualitative data analysis revealed four themes related to the family caregiving experience: 1) perceptions of dementia symptoms as a normal part of aging rather than a disease, 2) caregiving as a moral and expected familial obligation, 3) patterns of caregiving that are heavily influenced by both gender and sibling order, and 4) multiple challenges or hardships, including time constraints, loss of income, increased social isolation, a toll on their perceived physical health, and emotional distress. Caregivers rejected the notion that caregiving was a “burden” and expressed their distress through terms such as frustration, sadness, and exhaustion. Conclusions In this low-resource setting, the stress of family caregiving may be amplified by lack of community resources, cultural stigma discouraging outside help-seeking, and economic impact of care provision. The study highlights the vulnerability and predicament of Vietnamese women who often face multiple challenges in their caregiving role as well as the urgent need for the development of community-based programs and supports.

Protective preparation: a process central to family caregivers of persons with mild cognitive impairment

2017 ◽  
Vol 30 (3) ◽  
pp. 375-384 ◽  
Author(s):  
Ching-Lin Wang ◽  
Li-Min Kuo ◽  
Yi-Chen Chiu ◽  
Hsiu-Li Huang ◽  
Huei-Ling Huang ◽  
...  
Keyword(s):  
Cognitive Impairment ◽  
Mild Cognitive Impairment ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Family Caregiving ◽  
Healthcare Providers ◽  
Theory Approach ◽  
Face To Face ◽  
The Family ◽  
The Impact

ABSTRACTBackground:To develop a theoretical model explaining the longitudinal changes in the caregiving process for family caregivers of persons with mild cognitive impairment (MCI) in Taiwan.Methods:A longitudinal, grounded theory approach using in-depth face-to-face interviews and an open-ended interview guide. We conducted 42 interviews over a two-year period; each participant was interviewed at least once every six months. All participants were interviewed in their home. The participants total of 13 family caregivers of persons with MCI.Results:One core theme emerged: “protective preparation.” This reflected the family caregiving process of preparation for a further decline in cognitive function, and protection from the impact of low self-esteem, accidents, and symptoms of comorbidities for the family member with MCI. Protective preparation contained three components: ambivalent normalization, vigilant preparation, and protective management.Conclusions:Interventions to help family caregivers manage the changes in persons with MCI can reduce caregiver burden. Our findings could provide a knowledge base for use by healthcare providers to develop and implement strategies to reduce caregiver burden for family caregivers of persons with MCI.

scholarly journals Addressing Adolescent Depression in Tanzania: Positive Primary Care Workforce Outcomes Using a Training Cascade Model

2017 ◽  
Vol 2017 ◽  
pp. 1-9 ◽  
Author(s):  
Stan Kutcher ◽  
Yifeng Wei ◽  
Heather Gilberds ◽  
Adena Brown ◽  
Omary Ubuguyu ◽  
...  
Keyword(s):  
Training Program ◽  
Low Income ◽  
Help Seeking ◽  
Adolescent Depression ◽  
Healthcare Providers ◽  
Cascade Model ◽  
Diagnosis And Treatment ◽  
Resource Setting ◽  
Primary Care Workforce ◽  
Low Resource Setting

Background. This is a report on the outcomes of a training program for community clinic healthcare providers in identification, diagnosis, and treatment of adolescent Depression in Tanzania using a training cascade model. Methods. Lead trainers adapted a Canadian certified adolescent Depression program for use in Tanzania to train clinic healthcare providers in the identification, diagnosis, and treatment of Depression in young people. As part of this training program, the knowledge, attitudes, and a number of other outcomes pertaining to healthcare providers and healthcare practice were assessed. Results. The program significantly, substantially, and sustainably improved provider knowledge and confidence. Further, healthcare providers’ personal help-seeking efficacy also significantly increased as well as the clinicians’ reported number of adolescent patients identified, diagnosed, and treated for Depression. Conclusion. To our knowledge, this is the first study reporting positive outcomes of a training program addressing adolescent Depression in Tanzanian community clinics. These results suggest that the application of this training cascade approach may be a feasible model for developing the capacity of healthcare providers to address youth Depression in a low-income, low-resource setting.

scholarly journals Dementia in People with a Turkish Migration Background: Experiences and Utilization of Healthcare Services

2020 ◽  
Vol 77 (2) ◽  
pp. 865-875
Author(s):  
Jessica Monsees ◽  
Tim Schmachtenberg ◽  
Wolfgang Hoffmann ◽  
Amy Kind ◽  
Andrea Gilmore-Bykovskyi ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Help Seeking ◽  
Qualitative Content Analysis ◽  
Relevant Information ◽  
Healthcare Services ◽  
Migration Background ◽  
Structured Interviews ◽  
Migrant Populations ◽  
Turkish Culture ◽  
Willingness To Use

Background: As the proportion of older people with migration background (PwM) increases, the proportion of older PwM with dementia might also increase. Dementia is underdiagnosed in this group and a large proportion of PwM with dementia and family caregivers are not properly supported. Healthcare utilization is lower among older migrant populations. Thus, a better understanding of how PwM and family caregivers perceive their situation and how they experience healthcare services is needed to improve utilization of the healthcare system. Objective: Analyze how family caregivers of PwM with dementia experience their situation, why healthcare services are utilized less often, and what can be done to reverse this. Methods: Eight semi-structured interviews were conducted with people with Turkish migration background caring for PwM with dementia. Qualitative content analysis was used for data analysis. Results: Daily care was performed by one family member with the support of others. Healthcare services were used by most participants. Participants identified a need for better access to relevant information and incorporation of Turkish culture into healthcare services. Conclusion: PwM face similar challenges in taking care of persons with dementia as those without migration background. There is a willingness to use services, and services embracing Turkish culture would help to reduce hesitance and make affected people feel more comfortable, thereby increasing utilization and satisfaction. A limitation of this study is that participants were already connected to health services, which may not reflect the help-seeking behavior of those in the Turkish community who are not involved in healthcare.

Family Caregivers’ Anticipatory Grief: A Conceptual Framework for Understanding Its Multiple Challenges

2019 ◽  
Vol 30 (5) ◽  
pp. 693-703 ◽  
Author(s):  
Alexandra Coelho ◽  
Maja de Brito ◽  
Pedro Teixeira ◽  
Pedro Frade ◽  
Luísa Barros ◽  
...  
Keyword(s):  
End Of Life ◽  
Cancer Patients ◽  
Family Caregivers ◽  
Emotional Regulation ◽  
Clinical Sample ◽  
Anticipatory Grief ◽  
Structured Interviews ◽  
Adaptive Challenges ◽  
Traumatic Distress ◽  
Multiple Challenges

The end-of-life trajectory of cancer patients in palliative care (PC) elicits an anticipatory grief (AG) process in family caregivers (FCs). Although widely recognized, AG lacks conceptual clarification. This study aims to qualitatively explore the experience of FCs of patients with terminal cancer to identify the core characteristics and the specific adaptive challenges related to AG in the context of end-of-life caregiving. Data were collected through in-depth semi-structured interviews conducted in a clinical sample of 26 FCs of cancer patients in PC. Findings from thematic analysis suggest that the AG experience is characterized by traumatic distress from being exposed to life-threatening conditions and the separation distress induced by loss anticipation and current relational losses, challenging the FCs to long-term emotional regulation effort demands. These results contribute to the conceptualization of AG and may inform intervention programs for the main challenges the FCs face when adjusting to loss during end-of-life caregiving.

scholarly journals A Review of the Complex Role of Family Caregivers as Health Team Members and Second-Order Patients

Healthcare ◽  
2019 ◽  
Vol 7 (2) ◽  
pp. 63 ◽  
Author(s):  
Sherman
Keyword(s):  
Family Caregivers ◽  
Family Caregiving ◽  
Well Being ◽  
Health Care Team ◽  
Second Order ◽  
Team Members ◽  
Physical Decline ◽  
Health Team ◽  
The Family

In Palliative Care, the unit of care is the patient and their family. Although members of the health care team often address the family caregiver’s opinions and concerns, the focus of care remains on the needs of the patient. The readiness and willingness of the family caregiver is often overlooked as they are expected to assume a complex caregiving role. When family caregivers are not intellectually or emotionally prepared or physically capable, the caregiver is at high risk for serious health issues and cognitive, emotional, and physical decline particularly as caregiving extends over time. Family caregivers are often a neglected and at-risk population. Illustrated through the use of a case study, this article addresses the complex role of family caregivers, as both health team members and second-order patients. It emphasizes the importance of family assessment and interventions to balance the burdens and benefits of family caregiving and protect caregivers’ health and well-being.

scholarly journals Caregiving at the margins: An ethnographic exploration of family caregivers experiences providing care for structurally vulnerable populations at the end-of-life

2020 ◽  
Vol 34 (7) ◽  
pp. 946-953 ◽  
Author(s):  
Kelli I Stajduhar ◽  
Melissa Giesbrecht ◽  
Ashley Mollison ◽  
Naheed Dosani ◽  
Ryan McNeil
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Family Caregivers ◽  
Family Caregiving ◽  
Transitional Housing ◽  
Mental Health Stigma ◽  
Care Practice ◽  
Structural Vulnerability ◽  
Structured Interviews ◽  
Care Models

Background: People experiencing structural vulnerability (e.g. homelessness, poverty, racism, criminalization of illicit drug use and mental health stigma) face significant barriers to accessing care at the end-of-life. ‘Family’ caregivers have the potential to play critical roles in providing care to these populations, yet little is known regarding ‘who’ caregivers are in this context and what their experiences may be. Aim: To describe family caregiving in the context of structural vulnerability, to understand who these caregivers are, and the unique challenges, burdens and barriers they face. Design: Critical ethnography. Setting/participants: Twenty-five family caregivers participated. Observational fieldnotes and semi-structured interviews were conducted in home, shelter, transitional housing, clinic, hospital, palliative care unit, community-based service centre and outdoor settings. Results: Family caregivers were found to be living within the constraints of structural vulnerability themselves, with almost half being street family or friends. The type of care provided varied greatly and included tasks associated with meeting the needs of basic survival (e.g. finding food and shelter). Thematic analysis revealed three core themes regarding experiences: Caregiving in the context of (1) poverty and substance use; (2) housing instability and (3) challenging relationships. Conclusion: Findings offer novel insight into the experiences of family caregiving in the context of structural vulnerability. Engaging with family caregivers emerged as a missing and necessary palliative care practice, confirming the need to re-evaluate palliative care models and acknowledge issues of trust to create culturally relevant approaches for successful interventions. More research examining how ‘family’ is defined in this context is needed.

The Shame of Drinking Alcohol While Pregnant: The Production of Avoidance and Ill-Health

Affilia ◽  
2021 ◽  
pp. 088610992098513
Author(s):  
Sibongile Matebese ◽  
Catriona Ida Macleod ◽  
Nontozamo Tsetse
Keyword(s):  
Maternal Health ◽  
Well Being ◽  
Drinking Alcohol ◽  
Resource Setting ◽  
Low Resource Setting ◽  
Social Discourses ◽  
The Family ◽  
Women's Lives ◽  
Future Child ◽  
Health And Well Being

In this article, we examine the operation of shame in the alcohol use habits of pregnant women and the responses of their families and associated institutions. Using a narrative–discursive approach, we interviewed 13 women, living in a low-resource setting in South Africa, who had consumed alcohol while pregnant. Narratives showed how both the act of drinking and “inappropriately” timed pregnancy (early and out of wedlock) were judged to be unacceptable. Women who engaged in these activities were positioned as bad mothers or promiscuous. Their actions were seen as resulting in the suffering of others—the future child, the family, and even the community. These narratives were underpinned by cultural and religious discourses. Women managed the shame accruing to them through avoidance and concealment; families instructed women to self-exclude or distanced themselves from the women’s behavior; and institutions subtly or overtly excluded women. The shaming of these women, and the mechanisms by which such shame was managed, did little to decrease drinking or to increase maternal health and welfare. Overall, this article demonstrates how the shame of drinking alcohol during pregnancy produces avoidance behavior, concealment, and exclusion, which are not constructive in terms of maternal health and well-being. The implications for a feminist narrative approach to drinking during pregnancy are outlined: moving beyond a focus on individual behavior change to locating personal stories within the meta-narratives and social discourses that shape pregnant women’s lives.

scholarly journals Co-Designing Caregiver-Centered Care: Training the Health Workforce to Support Family Caregivers

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 15-16
Author(s):  
Jasneet Parmar ◽  
Lisa Poole ◽  
Sharon Anderson ◽  
Pollard Cheryl ◽  
Wendy Duggleby ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Health Workforce ◽  
Family Caregiving ◽  
Core Competencies ◽  
Healthcare Providers ◽  
Term Care ◽  
Care Education ◽  
People With Dementia ◽  
Centered Care ◽  
Care Health

Abstract Family caregivers [FCGs] provide over 80% of the care for people with dementia, chronic illness and impairments. Despite evidence of their contributions and consequences of caregiving, support for FCGs has not been a health system priority. Our innovative solution, to reduce caregiver distress and support caregivers’ wellbeing, is to educate the health workforce in a meaningful manner based on evidence. We validated Caregiver-Centered Care Core Competencies required to address the gap between what FCGs report they need and preparation of healthcare providers to meet those needs. This competency-based education will prepare healthcare providers to effectively identify, engage, assess, and support FCGs, and address the inconsistent system of supports for FCGs. We co-designed our Caregiver Centered Care Education using effective practices for dementia education for health workforce and co-design. We engaged over 60 multi-level, interdisciplinary stakeholders with expertise in health workforce education, frontline healthcare, dementia care, health policy, and family caregiving. We ensured that we included FCGs of people living with dementia. The teaching/learning resources include competency-aligned educational modules, multimedia resources, and facilitators guide. As the hallmark of effective education is content relevant to learners’ needs and contexts, our education is designed flexibly, to be tailored to settings and learners. We are pilot testing the Caregiver-Centered Care Education, for acceptability and effectiveness, in five contexts: primary care, acute care, homecare, supportive living, and long-term care. Our education will support Caregiver-Centered Care in all settings providing dementia-related care. Health workforce support will be essential to maintain FCG wellbeing and sustain family caregiving.

The support needs of family caregivers of persons with dementia in India: Implications for health services

Dementia ◽  
2017 ◽  
Vol 18 (6) ◽  
pp. 2230-2243 ◽  
Author(s):  
Neha Lamech ◽  
Shruti Raghuraman ◽  
Sridhar Vaitheswaran ◽  
Thara Rangaswamy
Keyword(s):  
Family Caregivers ◽  
Help Seeking ◽  
Health Care Services ◽  
Health Workers ◽  
Economic Status ◽  
Cost Effective ◽  
Care Needs ◽  
Middle Income ◽  
Resource Setting ◽  
Low And Middle Income

The World Alzheimer’s Report estimates that 4.1 million people in India have dementia. Caregivers of persons with dementia face physical, psychological, social and financial problems related to caring for a person with dementia. Literature on the caregiving experience however is highly specific to the sociocultural context and cannot be generalized. In low and middle income countries much of the caregiving takes place in people’s homes and is provided by family caregivers. Aim This study aims to explore the needs and challenges of family caregivers in Chennai, India. Method Focus group discussions and in-depth interviews were conducted using a topic guide. Participants were divided based on socio-economic status to ensure homogeneity. An inductive thematic approach was used to analyse and code the data. A total of 19 participants took part in the study. Results The results capture the experience of caregivers of persons with dementia in seeking help and accessing treatment. Priority caregiver needs were identified, including the need for sensitised, skilled health workers, information on dementia and advanced care needs and cost effective services. Conclusion The findings of this study strongly support the need to strengthen health systems capacity, make the health care services dementia friendly and cost effective. The influence of culture in shaping help seeking was evident in our findings. Interventions for caregivers and persons with dementia need to be developed and tested so they might be made fit for purpose and scaled up. It will be important to identify how these services can be adapted for use in low and middle income country resource setting like India.

scholarly journals The Impact of Major Events on the Lives of Family Caregivers of Children with Disabilities

1996 ◽  
Vol 77 (8) ◽  
pp. 502-514 ◽  
Author(s):  
Thomas P. McDonald ◽  
Graciela Couchonnal ◽  
Theresa Early
Keyword(s):  
Family Caregivers ◽  
Emotional Disorders ◽  
Family Caregiving ◽  
Well Being ◽  
Stressful Events ◽  
School Activities ◽  
Children's Behavior ◽  
The Family ◽  
Families With Children ◽  
The Impact

The authors examine the family caregiving experience among families with children with severe emotional disabilities from a perspective that recognizes the importance of the family's views and feelings. This viewpoint anticipates the occurrence of both positive and negative experiences and seeks to illuminate the caregiving process from the perspective of outcomes achieved. Family caregivers of 164 children with serious emotional disorders were asked to identify major pleasant and stressful events that had occurred in the past 12 months. The most frequently described pleasant events related to children's behavior, school activities, and interactions with professionals and friends. Frequently described problem areas included children's behavior, professionals/services, and difficulty with school. The impact of these pleasant and stressful events was examined with respect to caregivers' perceived well-being: (1) overall stress, (2) the ability to fulfill responsibilities, and (3) pleasure experienced in various life domains. Implications of the study findings for supporting family caregivers in their roles are discussed.

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