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Article
Publication date: 17 March 2020

Watchara Tabootwong and Frank Kiwannuka

Elderly patients requiring prolonged mechanical ventilation are treated with a tracheostomy. Oftentimes, the family caregivers need to participate in the care for elderly…

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Abstract

Purpose

Elderly patients requiring prolonged mechanical ventilation are treated with a tracheostomy. Oftentimes, the family caregivers need to participate in the care for elderly patients with a tracheostomy during hospitalization. Therefore, this paper was conducted to acknowledge what family caregivers experience while caregiving for hospitalized elderly patients with a tracheostomy.

Design/methodology/approach

This literature review identifies family caregiver participation in caregiving for the elderly patient, the impact of caregiving, and the needs of family caregivers.

Findings

Family caregivers participate in the planning and provision of care to elderly patients. Furthermore, they also collaborate in the therapeutic process for elderly patients as well. Albeit the former sentiments, they experience physical, psychological, social and financial consequences of caregiving. It has been revealed that during the process of caring for their loved ones, family caregivers often experience poor sleep quality, strain, reduction in social interaction and insufficient income. Thus, health-care professionals should support and provide care for the needs of family caregivers. This can be achieved through providing information on prognosis, the care plan, emotional support and collaboration during the therapeutic process to provide better care for elderly patients with a tracheostomy. In addition, family caregivers’ relatives can also provide financial support and rotation of caregiving schedules to avoid burnout.

Originality/value

The paper indicates that family caregivers experience the impacts of caregiving. They should be supported by health-care professionals and their relatives.

Details

Working with Older People, vol. 24 no. 2
Type: Research Article
ISSN: 1366-3666

Keywords

Article
Publication date: 25 March 2022

Megan Middlemiss, Lisa Caygill, Sarah Craven-Staines and Joyce Powell

Exposure to trauma in childhood can have lasting impacts upon development and psychological well-being. Services can be sought to help young people heal from their…

Abstract

Purpose

Exposure to trauma in childhood can have lasting impacts upon development and psychological well-being. Services can be sought to help young people heal from their experiences; however, literature suggests that their care may not always be trauma-informed. This paper aims to generate a theory to explain caregivers’ experiences of accessing mental health and therapeutic services for young people exposed to developmental trauma.

Design/methodology/approach

A constructivist grounded theory approach was used, using an iterative process of data collection and analysis. Nine individuals including foster carers, adoptive parents and a special guardian were interviewed following purposive and theoretical sampling. Techniques of initial, focused and theoretical coding, alongside constant comparative analysis were used to develop the end theory.

Findings

The theory demonstrates that multiple factors can impact upon caregivers’ experiences when accessing support for young people exposed to trauma. Six themes emerged documenting caregivers’ journeys from the decision to seek support to the ending of service involvement. Barriers, challenges and positive experiences are described. Results are contextualised through consideration of wider organisations and systems.

Originality/value

The theory highlights challenges caregivers face when accessing mental health and therapeutic support for young people exposed to developmental trauma. It provides new insights into what caregivers consider to be trauma-informed experiences of care in these settings. Tentative recommendations are provided in the hope of improving future care.

Details

Mental Health Review Journal, vol. 27 no. 2
Type: Research Article
ISSN: 1361-9322

Keywords

Article
Publication date: 21 March 2022

Adrian D. Van Breda, Anduamlak Molla Takele and Messay Gebremariam Kotecho

Research on caregivers’ experiences of and perspectives on preparing young people to leave care in Africa is lacking. A clearer understanding of caregivers’ practice and…

Abstract

Purpose

Research on caregivers’ experiences of and perspectives on preparing young people to leave care in Africa is lacking. A clearer understanding of caregivers’ practice and experience is important for developing improved care-leaving services. The aim of this study is to describe the experiences and perceptions of caregivers providing care-leaving services at one residential care institution in Addis Abba, Ethiopia.

Design/methodology/approach

A qualitative description research design was used to examine the perspectives of seven caregivers and three key informants concerning the preparation of female care-leavers for leaving care and their readiness to lead an adult life in Ethiopia. Participants were purposively selected and data were collected through focus group discussions and in-depth interviews. The generated data were analysed using thematic analysis.

Findings

Caregivers are passionate about their work, seeing it more as a calling than as a job, and think of themselves as parents to the children. Most reported receiving at least some training, albeit informal or ad hoc, and faced challenges because of lack of resources. Regarding their preparation of the girls for leaving care, caregivers reported inadequate success in financial literacy and savings, continued schooling, cooking, cultural literacy and aftercare support.

Originality/value

This study thus underscores the absence of a preparation for leaving care practice guideline and an independent policy that guides care-leaving in Ethiopia. Policy improvement on caregiving that recognises and values the complexity of the job of caregiving, and thus the need for greater education, is highly needed. This paper sheds light on the issue of supporting caregivers’ attempt to mentor female care-leavers in Ethiopia.

Details

Journal of Children's Services, vol. ahead-of-print no. ahead-of-print
Type: Research Article
ISSN: 1746-6660

Keywords

Article
Publication date: 25 March 2022

Watchara Tabootwong, Katri Vehviläinen-Julkunen, Pornchai Jullamate, Edwin Rosenberg and Hannele Turunen

The purpose of this paper is to describe family caregivers’ experiences of providing care for older people with a tracheostomy during hospitalization.

Abstract

Purpose

The purpose of this paper is to describe family caregivers’ experiences of providing care for older people with a tracheostomy during hospitalization.

Design/methodology/approach

A descriptive phenomenological approach was used in this study. A total of 40 family caregivers were interviewed face-to-face in medical-surgical wards. Data was analyzed using Giorgi’s phenomenological method.

Findings

Family caregivers described meanings of providing care, learning how to provide care, caring activities, impacts of caregiving, support needs and qualities of being a caregiver. Meanings included filial responsibility, spousal attachment and end of life care. Caring activities were varied. Impacts experienced were reported as physical, psychological, social and financial. Caregivers expressed the need for information from the nursing team and assistance from their relatives. Positive caregiver qualities that were described included loving to provide care for older people and confidence and sincerity in caregiving.

Practical implications

Although caring for older people with a tracheostomy was difficult and came with challenging impacts, family caregivers were willing to support their loved ones due to feelings of family responsibility.

Originality/value

The paper addresses family participation in providing care for people with a tracheostomy. They experience physical, psychological, social and financial consequences of caregiving. Therefore, health-care professionals should support family caregivers with education, training and awareness of supports and resources for dealing with problematic impacts and other expressed needs.

Details

Working with Older People, vol. ahead-of-print no. ahead-of-print
Type: Research Article
ISSN: 1366-3666

Keywords

Book part
Publication date: 15 October 2013

Christine M. Proulx, Teresa M. Cooney, Jacqueline J. Benson and Linley A. Snyder-Rivas

Family members provide the bulk of care to persons in later life, representing the vast majority of caregivers. However, studies confirm that men with a history of divorce…

Abstract

Family members provide the bulk of care to persons in later life, representing the vast majority of caregivers. However, studies confirm that men with a history of divorce are less likely than married men to view family members as potential caregivers. This chapter presents findings from a qualitative study on the experiences of 21 ex-wives who chose to provide mostly end-of-life care to their ex-husbands in mid- and late-life. We examine questions about the situational and motivating factors behind ex-wife caregivers’ decisions, and provide, as background, findings about their pre- and post-divorce relationships. Relational outcomes of the caregiving situation also are considered. Several themes emerge, including patterns of proximity and continued contact post-divorce, despite often chaotic former marital relationships; a desire to spare children from the burdens of care; and an opportunity to renew communication or connections with family through the process of caregiving. Implications of our findings include the need to acknowledge ex-spouses as potential caregivers and better understand the enduring bonds between ex-spouses.

Details

Visions of the 21st Century Family: Transforming Structures and Identities
Type: Book
ISBN: 978-1-78350-028-4

Keywords

Book part
Publication date: 30 December 2004

Neale R. Chumbler, John Fortney, Marisue Cody and Cornelia Beck

The purpose of the present study is to investigate whether family caregivers with a stronger sense of coherence (SOC) who are caring for community dwelling older adults…

Abstract

The purpose of the present study is to investigate whether family caregivers with a stronger sense of coherence (SOC) who are caring for community dwelling older adults with cognitive impairment are less likely to use mental health services. An adaptation of the Anderson behavioral model of access to health care was employed as a conceptual framework. Data were collected for 304 impaired older adult/family caregiver dyads. Caregiver mental health service use and sense of coherence were measures as well as predisposing factors (age, gender, race, education, type of familial relationship, family size, and co-residence with impaired family member), enabling factors (self-reported awareness of services, travel times to mental health services, social support, and insurance), and need factors (chronic health conditions and distress). The impaired elder’s age, level of physical impairment, and level of memory impairment were also examined. Logistic regression results indicated that caregivers who have a stronger SOC were less likely to use mental health services (OR=0.91, p=0.006). Other significant independent predictors of mental health service use were social support (OR=0.34, p=0.032) and caregivers aiding family members with higher levels of physical impairment (OR=1.14, p=0.033). The results of this study support clinicians and planners developing mental health services that use SOC to mitigate the detrimental effects of caregiving. Future research is needed to target effective measures to positively manipulate this variable.

Details

Chronic Care, Health Care Systems and Services Integration
Type: Book
ISBN: 978-1-84950-300-6

Book part
Publication date: 21 September 2015

Cara A. Chiaraluce

The purpose of this study is to investigate the informal micro-level mechanisms through which caregivers maximize their health literacy and caregiving skill-set…

Abstract

Purpose

The purpose of this study is to investigate the informal micro-level mechanisms through which caregivers maximize their health literacy and caregiving skill-set, particularly in cases of emergent, pervasive health disorders. Specifically, I investigate how important micro-level social factors, such as lay self-education and local community networks, mitigate extensive experiences of medical uncertainty that are associated with caring for a child with autism. This study theorizes a series of processes of becoming lay health care professionals (HCP), which serve as effective health care interventions and ways to secure vital resources for patients and their families.

Methodology/approach

This study uses qualitative research methods in the form of 50 individual intensive interviews with primary caregivers of at least one child under the age of 18 with an official autism diagnosis, as well as two years of participant-observation at two primary sites that are autism parent and caregiver resource meetings, both located in Northern California.

Findings

This study first demonstrates the major institutional limits and gaps involved in health-related caregiving for children with autism. Next, I define the processes through which caregivers challenge these institutional constraints and fight for life altering resources for their families, which include becoming a lay diagnostician and expert caregiver. Here, I demonstrate a sophisticated set of health literacy skills and key local community-based ties that caregivers develop and rely on, which affords families the tools to overcome diverse institutional obstacles in health-seeking and health care access.

Research limitations/implications

The families in this study are predominantly white, middle-class, and reside in California. For future research, the scope of the study could be expanded by increasing the sample size and including greater geographic and demographic diversity.

Originality/value

This study contributes vital, yet missing, pieces to the autism puzzle, which currently focuses on prevention, the fight for a so-called “cure,” and the role of vaccines in disorder prevalence. In the meantime, families are living with autism each day and are struggling for understanding and knowledge, and to secure adequate support services. In doing so, this study sheds light on current institutional gaps and limits in health care and delivery for children with autism, and suggests specific effective health care interventions applicable to other cases of emergent illnesses and disorders.

Details

Education, Social Factors, and Health Beliefs in Health and Health Care Services
Type: Book
ISBN: 978-1-78560-367-9

Keywords

Article
Publication date: 15 February 2022

Lia Raquel Teixeira de Sousa, Carlos Sequeira, Carme Ferré-Grau and Odete Araújo

The purpose of this paper is to identify the difficulties and overload/burden experienced by family caregivers of older dependent people during the COVID-19 outbreak.

Abstract

Purpose

The purpose of this paper is to identify the difficulties and overload/burden experienced by family caregivers of older dependent people during the COVID-19 outbreak.

Design/methodology/approach

A descriptive and cross-sectional study was conducted. This work was guided according to the Guideline strengthenin the reporting of observational studies in epidemiology (EQUATOR checklist). The study included 65 family caregivers of older people with physical or mental dependence. Caregivers were selected by convenience sampling through a national association of informal caregivers. Participants responded to an online questionnaire, which aimed to assess difficulties and burdens experienced during the pandemic. Ethical principles were followed throughout the research.

Findings

The participants were mostly women, with an average age of 53 years, teleworking and cohabiting with the dependent elderly. Most caregivers reported that the pandemic has led to an increase in daily difficulties and associated burden. There was a statistically significant increase in hours devoted to care during the pandemic. Also, caregivers reported less time to take care of themselves and greater fatigue during this period.

Research limitations/implications

This study had some limitations. For example, the small sample size. The sample was collected through an online version, and many caregivers did not have the digital skills needed to complete the questionnaires, and most of them were busy (divided between teleworking and household responsibilities). Another limitation was related to the perceived priority of caregivers because the majority of them considered this was a time-consuming study and saw no immediate benefits. Furthermore, they considered that this study has taken their time to manage all the provision of care to the elder relative and other activities related to their children who were also in quarantine. Finally, to date, there is no sufficient evidence to compare our results with other national and international studies. Further research is needed to allow the scalability of results and to apply the best available knowledge to mitigate the known and potential effects of this pandemic.

Practical implications

This study highlighted that frontline caregivers suffered a negative impact on their physical and mental health, in addition to a significant economic burden during the pandemic outbreak. More research in this field is needed to plan, train and manage large-scale public health emergencies.

Social implications

The COVID-19 pandemic imposed physical distancing, which profoundly affected the physical and mental health of community-dwelling older people and their family caregivers. Because of the confinement and closure of some social support institutions, family caregivers found themselves in a complex situation, having to reconcile care and teleworking. Therefore, it is important to identify the impact of the COVID-19 pandemic on the difficulties and burden of these caregivers to implement and develop social and health support measures.

Originality/value

This paper addresses an increasingly important issue – the burden and difficulties of family caregivers, in the light of a new reality – the Covid-19 pandemic, which has brought new difficulties for this population.

Details

The Journal of Mental Health Training, Education and Practice, vol. ahead-of-print no. ahead-of-print
Type: Research Article
ISSN: 1755-6228

Keywords

Book part
Publication date: 13 October 2014

SunWoo Kang and Nadine F. Marks

Guided by a life course theoretical perspective, this study aimed to examine associations between providing caregiving for a young or adult son or daughter with special…

Abstract

Purpose

Guided by a life course theoretical perspective, this study aimed to examine associations between providing caregiving for a young or adult son or daughter with special needs and multiple dimensions of physical health status among married midlife and older adults, as well as moderation of these associations by gender and marital quality (i.e., marital strain).

Method

Regression models were estimated using data from 1,058 married adults aged 33–83 (National Survey of Midlife in the U.S. (MIDUS), 2005).

Findings

Parental caregiving for a young or adult child with special needs (in contrast to no caregiving) was linked to poorer global health and more physical symptoms among both fathers and mothers. Father caregivers reported slightly more chronic conditions than noncaregiving men, regardless of marital quality. By contrast, mother caregivers reported a much higher number of chronic conditions when they also reported a high level of marital strain, but not when they reported a low level of marital strain.

Originality/value

Overall, results provide evidence from a national sample that midlife and older parents providing caregiving for a child with special needs are at risk for poorer health outcomes, and further tentatively suggest that greater marital strain may exacerbate health risks, particularly among married mother caregivers.

Details

Family Relationships and Familial Responses to Health Issues
Type: Book
ISBN: 978-1-78441-015-5

Keywords

Book part
Publication date: 8 March 2017

Kristin Turney, Britni L. Adams, Emma Conner, Rebecca Goodsell and Janet Muñiz

The rapid growth of mass incarceration in the United States means that a historically unprecedented number of children are exposed to paternal incarceration. Despite a…

Abstract

The rapid growth of mass incarceration in the United States means that a historically unprecedented number of children are exposed to paternal incarceration. Despite a growing literature investigating the intergenerational consequences of incarceration, little research collects information from the children who experience paternal incarceration. In this chapter, we describe an ongoing data collection effort, the Jail & Family Life Study, a longitudinal in-depth interview study designed to understand the consequences of paternal incarceration for families and children. Part of this study involves conducting in-depth interviews with 8- to 17-year-old children of incarcerated fathers during and after the father’s incarceration. First, we document the challenges and strategies to gaining access to children of incarcerated fathers, paying particular attention to the role of children’s mothers and caregivers in facilitating this access. Second, we document the challenges and strategies to developing rapport with this group of vulnerable children. Third, we describe the opportunities that children can provide for researchers. Taken together, these findings suggest that it is both challenging and imperative to incorporate children into research on the collateral consequences of incarceration.

Details

Researching Children and Youth: Methodological Issues, Strategies, and Innovations
Type: Book
ISBN: 978-1-78714-098-1

Keywords

1 – 10 of over 4000