Comparison of the lived experiences of family caregivers of patients with dementia and of patients with cancer in Indonesia

Kristanti, Martina Sinta; Engels, Yvonne; Effendy, Christantie; Astuti, Astuti; Utarini, Adi; Vernooij‐Dassen, Myrra

doi:10.1017/s1041610217001508

Cited by 32 publications

(33 citation statements)

References 32 publications

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“…34,35,42 In fact, our previous study in Indonesia showed that financial challenges of caregivers of patients with cancer were greater than those of caregivers of patients with dementia. 43 Our study also confirms previous findings that providing care can also have indirect negative financial consequences, such as a reduction of the caregiver’s time spent at work or at other productive tasks. 35…”

Section: Discussionsupporting

confidence: 91%

The experience of family caregivers of patients with cancer in an Asian country: A grounded theory approach

et al. 2019

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Background:Strong family bonds are part of the Indonesian culture. Family members of patients with cancer are intensively involved in caring, also in hospitals. This is considered “normal”: a societal and religious obligation. The values underpinning this might influence families’ perception of it.Aim:To explore and model experiences of family caregivers of patients with cancer in Indonesia in performing caregiving tasks.Design:A grounded theory approach was applied. The constant comparative method was used for data analysis and a paradigm scheme was employed for developing a theoretical model.Setting/participants:The study was conducted in three hospitals in Indonesia. The participants were family caregivers of patients with cancer.Results:A total of 24 family caregivers participated. “Belief in caregiving” appeared to be the core phenomenon. This reflects the caregivers’ conviction that providing care is an important value, which becomes the will power and source of their strength. It is a combination of spiritual and religious, value and motivation to care, and is influenced by contextual factors. It influences actions: coping mechanisms, sharing tasks, and making sacrifices. Social support influences the process of the core phenomenon and the actions of the caregivers. Both positive and negative experiences were identified.Conclusion:We developed a model of family caregivers’ experiences from a country where caregiving is deeply rooted in religion and culture. The model might also be useful in other cultural contexts. Our model shows that the spiritual domain, not only for the patient but also for the family caregivers, should be structurally addressed by professional caregivers.

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Section: Discussionsupporting

confidence: 91%

The experience of family caregivers of patients with cancer in an Asian country: A grounded theory approach

et al. 2019

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“…11 These have highlighted various lived experiences, each of which offer difference experiences dependent on the disease state of individuals. Whilst these are recurrent themes such as constant burden, 8,10 knowledge 9,11 and role reversal, 11 there are also differences related to reward, worth and pleasure which have been associated with caregiving for people with terminal illness, 12,13 but also fear and concern regarding harm, associated with caregiving for people with cognitive impairment. 14,15 Various sociological models have been developed to explain caregiver-care recipient dyads.…”

Section: Introductionmentioning

confidence: 99%

Lived experiences of informal caregivers of people with chronic musculoskeletal pain: a systematic review and meta-ethnography

Smith

Fletcher

Lister

2020

British Journal of Pain

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Background: People with chronic pain often seek support from friends and family for everyday tasks. These individuals are termed informal caregivers. There remains uncertainty regarding the lived experiences of these people who care for individuals with chronic musculoskeletal pain. The aim of this article is to synthase the evidence on the lived experiences of informal caregivers providing care to people with chronic musculoskeletal pain. Methods: A systematic literature review was undertaken of published and unpublished literature databases including EMBASE, MEDLINE, CINAHL, PubMed, the WHO International Clinical Trial Registry and ClinicalTrials.gov registry (to September 2019). Qualitative studies exploring the lived experiences of informal caregivers of people with chronic musculoskeletal pain were included. Data were synthesised using a meta-ethnography approach. Evidence was evaluated using the Critical Appraisal Skills Programme qualitative appraisal tool. Results: From 534 citations, 10 studies were eligible (360 participants: 171 informal caregivers of 189 care recipients). The evidence was moderate quality. Seven themes arose: the relationship of caregivers to healthcare professionals; role reversal with care recipients; acting the confidant to the care recipient; a constant burden in caregiving; legitimising care recipient’s condition; knowledge and skills to provide caregiving; and the perception of other family members and wider society to the caregiver/care recipient dyad. Conclusion: The lived experiences of caregivers of people with chronic musculoskeletal pain is complex and dynamic. There is an inter-connected relationship between caregivers, care recipients and healthcare professionals. Exploring how these experiences can be modified to improve a caregiving dyad’s lived experience is now warranted.

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“…Perhaps because dementia has no cure, this sense of fear and hopelessness continues to influence the care offered to people with dementia in Western countries. In other countries, by contrast, dementia is accepted as a normal condition of ageing and affected people are encouraged to engage and remain in their community 7 . Such cultural variations contribute to large geographical discrepancies in dementia treatment and care.…”

Section: [H1] Introductionmentioning

confidence: 99%

The promise of technology in the future of dementia care

Moyle

2019

Nat Rev Neurol

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Dementia is a leading cause of disability, and the prevalence of dementia is steadily increasing. Although people with dementia are living longer lives in the community, without adequate support for their declining physical and psychological needs, the majority of these individuals end up in nursing homes. With no cure in sight, and in the context of population ageing, we must consider how to care for these individuals in the future. Technologies that augment existing care can maintain a person comfortably in their community, maximize individual autonomy and promote social participation. However, to date, such technologies have rarely been used in dementia care. This Perspectives article highlights the need for affordable and appropriate technologies to assist future dementia care, outlines some of the technologies currently available, and describes the many challenges to integration of such technologies. Finally, guidelines are suggested for the development and implementation of new technologies in dementia care.

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Comparison of the lived experiences of family caregivers of patients with dementia and of patients with cancer in Indonesia

Cited by 32 publications

References 32 publications

The experience of family caregivers of patients with cancer in an Asian country: A grounded theory approach

The experience of family caregivers of patients with cancer in an Asian country: A grounded theory approach

Lived experiences of informal caregivers of people with chronic musculoskeletal pain: a systematic review and meta-ethnography

The promise of technology in the future of dementia care

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