More than chores: The invisible health work of family caregivers in rural New Brunswick, Canada

Holland, Mary Rita

doi:10.1016/j.healthplace.2021.102726

Cited by 7 publications

(7 citation statements)

References 20 publications

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“…Many carers struggled to balance emotional support and caregiving tasks with household chores and work obligations [38,44], which often led to them neglecting their own needs and health. This is consistent with Holland's [52] study, which suggested that caregiving can disrupt the balance between work, personal space, and time and can be seen as a job in itself. Other research has shown that providing palliative care can result in caregiver strain and poor physical and mental health [5,12,14,16,60,61].…”

Section: Discussionsupporting

confidence: 90%

“…Feeling unprepared for their new role as carers and lacking information and knowledge were some of the greatest obstacles reported by those walking on this lesstravelled road. The feeling of being unprepared for the caregiver role is in line with other studies on end-of-life care and is not limited to rural areas [4,17,51,52]. Not knowing what to expect around the next bend of the road while carrying the heavy load of responsibility is interpreted as a double burden in our meta-ethnography.…”

Section: Discussionsupporting

confidence: 80%

“…Additionally, studies have shown that end-of-life caregiving involves invisible forms of labour that go beyond caring tasks [52,62]. Wiles et al [62] argued that rather than solely focusing on the burdens faced by carers in rural areas, it is important to also understand the invisible labour involved in coordinating and managing care at home.…”

Section: Discussionmentioning

confidence: 99%

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Ambivalent and heavy burdened wanderers on a road less travelled: A meta- ethnography on end-of-life care experiences in rural areas

Breivik,

Ervik,

Kitzmüller

2023

Preprint

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Background: As the population ages, more people will be diagnosed with cancer, and they will live longer due to receiving better treatment and optimized palliative care. Family members will be expected to take on more responsibilities related to providing palliative care at home. Several countries have expressed their vision of making home death an option, but such a vision can be more challenging in rural areas. There is a lack of synthesized research providing an in-depth understanding of rural family caregiving for people with cancer at the end of life. Thus, the purpose of this study was to synthesize and reinterpret the findings from qualitative research on rural family caregivers of adult cancer patients in the final stages of life. Methods: We conducted a meta-ethnography following Noblit and Hare’s approach. A systematic literature search of four databases and extensive manual searches were completed in April 2022. The final sample included twelve studies from six different countries published in 2011-2022. Results: Based on the translation and synthesis of the included studies, four themes were developed (1) providing family care at the end of life in rural areas - a challenging endeavour; (2) the heavy responsibility of rural caregiving - a lonesome experience; (3) working on and behind the scenes; and (4) the strong and weak spots of community connectedness in rural areas. An overarching metaphor, namely, “ambivalent and heavy burdened wanderers on a road less travelled”, provides a deeper understanding of the meaning of rural family caregiving at the end of life. Conclusions: This study provides valuable insights into end-of-life cancer care for rural families. It is crucial to prepare family carers for the demanding role of palliative caregiving in rural areas. To address the long distances and poor access related to specialized health care services, outpatient palliative teams tailored to the families’ individual needs should be provided. In addition, more telehealth services, palliative units, or beds in local nursing facilities may reduce the number of exhausting trips that need to be made by caregivers and patients. The further education of health care workers providing palliative care in rural areas is needed. Trial registration: The study was registered in PROSPERO

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Section: Discussionsupporting

confidence: 90%

Section: Discussionsupporting

confidence: 80%

Section: Discussionmentioning

confidence: 99%

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Ambivalent and heavy burdened wanderers on a road less travelled: A meta- ethnography on end-of-life care experiences in rural areas

Breivik,

Ervik,

Kitzmüller

2023

Preprint

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“…Two-thirds of these rural caregivers were experiencing financial strain because of their caregiving. A plethora of research has documented the lack of supports and services for rural caregivers prior to the COVID-19 pandemic [ 28 , 50 , 51 , 52 , 53 , 54 , 55 ]. For example, in their 2006 review of rural women caregivers in Canada, Crosato and Leipart [ 50 ] found that limited access to appropriate and adequate healthcare services, challenges of distance and transportation, and social/geographical challenges left rural caregivers susceptible to distress and burden.…”

Section: Discussionmentioning

confidence: 99%

Rural Family Caregiving: A Closer Look at the Impacts of Health, Care Work, Financial Distress, and Social Loneliness on Anxiety

et al. 2022

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Even before the COVID-19 pandemic, earlier acute care patient discharges, restricted admissions to long-term care, and reduced home care services increased the amount and complexity of family caregivers’ care work. However, much less is known about rural caregivers’ experiences. Thus, our aim in this sequential mixed-methods study was to understand how COVID-19 affected rural family caregivers. Thematically analyzed interviews and linear regression on survey data were used to understand family caregiver stress. Fourteen rural caregivers participated in interviews. They acknowledged that they benefitted from the circle of support in rural communities; however, they all reported having to cope with fewer healthcare and social services. 126 rural caregivers participated in the online survey. About a third (31%) of these caregivers had moderate frailty, indicating that they could benefit from support to improve their health. In linear regression, frailty, social loneliness, financial hardship, and younger age were associated with caregiver anxiety. Contrary to the qualitative reports that people in rural communities are supportive, over two-thirds of the rural caregivers completing the survey were socially lonely. Rural family caregivers are vulnerable to anxiety and social loneliness due to the nature of caregiving and the lack of healthcare and social service supports in rural areas. Primary healthcare and home care teams are well-positioned to assess caregivers’ health and care situation as well as to signpost them to needed supports that are available in their areas.

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“…Basically, humans need a place of protection after getting their basic needs [1]. A house is a place for humans to live and a reason to ensure health [2]. In order to be considered feasible, a house must at least meet the health criteria.…”

Section: Introductionmentioning

confidence: 99%

Realizing healthy homes through the latrine program in Meteseh Village Semarang Indonesia

Mandaka

Wardianto

Nuzuludin

2022

J. Pemberdaya. Publ. Has. Pengabdi. Kpd. Masy

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A place of shelter and rest that fulfils physiological needs fulfils psychological needs, prevents disease transmission, prevents accidents and fulfils the concepts of cleanliness, health and beauty that can lead to a perfect life, both physically, spiritually and economically, is called a healthy home. Its characteristics include having a good water source, smooth air circulation inside and outside the room, solid and liquid waste disposal channels, freeing harmful chemicals, house cleanliness, sturdy building materials, and a green environment. Basically, housing is a basic human need and is also a determinant of public health. Decent housing for housing must meet health requirements, one of which concerns the need for latrines. The purpose of this paper is to provide insight to the Meteseh community regarding healthy homes and provide solutions for people who do not meet healthy home standards. In Meteseh Village, there are still houses that do not have latrines. This time, the types of community service programs were in the form of counselling and demonstrations. The method used was by coordinating with the village head in Meteseh, Tembalang District, Semarang, conducting field surveys, asking permission to socialize with residents regarding healthy homes, then installing latrines and evaluating after latrine installation. This activity's target is poor and has not implemented a clean and healthy lifestyle in Meteseh village. The result after the service is that the Meteseh community understands a healthy home better and also begins to apply it in their daily lives.

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More than chores: The invisible health work of family caregivers in rural New Brunswick, Canada

Cited by 7 publications

References 20 publications

Ambivalent and heavy burdened wanderers on a road less travelled: A meta- ethnography on end-of-life care experiences in rural areas

Ambivalent and heavy burdened wanderers on a road less travelled: A meta- ethnography on end-of-life care experiences in rural areas

Rural Family Caregiving: A Closer Look at the Impacts of Health, Care Work, Financial Distress, and Social Loneliness on Anxiety

Realizing healthy homes through the latrine program in Meteseh Village Semarang Indonesia

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