Shifting of Centricity: Qualitative Meta Synthetic Approach on Caring Experience of Family Members of Patients with Dementia

Ryu, Young Mi; Yu, Mi; Oh, Seieun; Lee, Haeyoung; Kim, Hae Jin

doi:10.4040/jkan.2018.48.5.601

Cited by 12 publications

(8 citation statements)

References 19 publications

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“…40 According to previous studies about caregivers' experiences, changes in the family structures, and social relationships were important factors. 41 Similar to our findings, establishing their own coping strategy was an important adaptation method for caregivers of patients with dementia 42 and eating disorders. 43 Our finding is also consistent with a previous study that reported that it was vital for caregivers of patients with traumatic injury to obtain information about and understand the condition.…”

Section: Discussionsupporting

confidence: 86%

“…This result regarding an attempt to strike a balance is similar to the previously reported experience of caregivers of patients with dementia. 42 Nurses could play a role in helping caregivers attain a new vision of life and encouraging individual growth, which would lead to harmony. According to Pressler et al's study, 46 while caregivers of patients with HF experienced depressive and psychosocial symptoms in the initial phase of the disease, as time passed, these symptoms decreased.…”

Section: Discussionmentioning

confidence: 99%

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Caring experiences of family caregivers of patients with heart failure: A meta-ethnographic review of the past 10 years

Kim

Son

2020

European Journal of Cardiovascular Nursing

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Background: Living with heart failure, a debilitating disease with an unpredictable course, requires ongoing adaptation and management not only from patients but also from their families. Family caregivers have been known to be key facilitators of self-management of heart failure. An integrative understanding of the experiences of family caregivers will provide essential information for improving the quality of life of persons with heart failure and their families. Aims: This study aimed to integrate and synthesize the findings of qualitative studies on family members’ experiences of caring for patients with heart failure. Methods: We employed the meta-ethnography methodology. Five electronic bibliographic databases were used to retrieve studies published from April 2009–March 2019 that explored family caregivers’ experiences of caring for patients with heart failure. Twelve qualitative studies were finally included for the synthesis, based on the eligibility criteria. Results: Three themes were identified: “shouldering the entire burden,” “starting a new life,” and “balancing caregiving and everyday life.” These three themes illustrate how family caregivers fulfilled caregiving roles, what helped them juggle their multiple responsibilities, and how they struck a balance between life as caregivers and individuals in their own right. Conclusion: This review provides a deeper understanding of family caregivers’ experiences of caring for patients with heart failure. The findings can help healthcare providers in the development and implementation of tailored interventions for both patients and family caregivers.

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Section: Discussionsupporting

confidence: 86%

Section: Discussionmentioning

confidence: 99%

Caring experiences of family caregivers of patients with heart failure: A meta-ethnographic review of the past 10 years

Kim

Son

2020

European Journal of Cardiovascular Nursing

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“…As the disease progresses, the primary caregivers’ life revolves around caregiving, typically leaving their own life behind, and the patient becomes the center of their life. This is consistent with the “shift in focus of life” [ 28 ] observed in a metasynthesis study of the families of dementia patients in Korea. With the social isolation of ALS patients, caregivers have to be by their side 24/7, and they too become excluded from interactions with society.…”

Section: Discussionsupporting

confidence: 90%

Family Caregiver Suffering in Caring for Patients with Amyotrophic Lateral Sclerosis in Korea

Kim

Chu

2021

IJERPH

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The purpose of this study was to describe the meaning of the suffering experience of Korean ALS family caregivers. This is a descriptive phenomenological study that included ten participants using convenience sampling with maximum variation in a tertiary hospital in Seoul, South Korea. Colaizzi’s data analysis method was used to inductively determine themes and formulate meanings. The three main themes derived from analysis were: “frustration with seeing a patient suffering”, “burnout at the cost of a life of dedication”, and “desperate need for help”. Caregivers experience high levels of suffering, which can come in various forms depending on the circumstances of the particular patient and family. Especially, distress from seeing a loved one suffering was another aspect of suffering in Korean ALS caregivers, reflecting strong family ties. At the same time, patients are in desperate need of help and support from their families. Thus, it is essential to provide care to lessen the causes of distress and meet the needs of not only patients, but also caregivers through family-centered care to improve overall quality of life for all involved.

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“…This excessive use of time for caring activities creates a time imbalance, which can worsen quality of life and cause health problems ( Jeon, 2011 ). Because Dementia families have to take care of people with dementia, it becomes difficult to meet neighbors or friends, they can no longer engage in hobbies, and they are unable to attend family events and are often disconnected from society ( Ryu et al, 2018 ). In order to solve this problem, support at the national level is needed, and adaptation to care is needed through the provision of positive meaning of care within the dementia families ( Kil & Cho, 2020 ).…”

Section: Discussionmentioning

confidence: 99%

“…In order to take constant care of the elderly dementia patients, dementia families need to adjust their daily life according to the patients’ schedule, which disrupts their time allocation and performance of daily living ( Kim, Kwon & Lee, 2018 ). The limitation of time usage in dementia families leads to the reduction or severance of their social relationships, which has a negative impact on the caregiving process ( Ryu et al, 2018 ). As the amount of time dementia families spends caring for the dementia patient increases, the quality of life is negatively affected ( Hazzan et al, 2022 ).…”

Section: Introductionmentioning

confidence: 99%

Time usage analysis according to occupational area and satisfaction level in family caregivers of dementia patients

Jang¹,

Jang²,

Park³

2023

PeerJ

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Background This study was designed to investigate the difference between the family caregivers of dementia patients (hereafter referred to as dementia family) and the non-family caregivers of dementia patients (hereafter referred to as non-dementia family) in terms of time usage. Methodology A total of 102 dementia families who responded to the ‘time use survey’ in 2019 were enrolled in the study. 101 non-dementia families include families who did not respond to the ‘dementia’ item, and simple random sampling was performed. Time usage according to occupational area and satisfaction level were analyzed based on the Occupational Therapy Practice Framework-Fourth Edition (OTPF-4). Statistical analyses were completed using IBM SPSS 25. The data was analyzed by using frequency analysis and independent two-sample t-test. A level of p < 0.05 was used as a cut-off for statistical significance. Results As for the time consumption by occupational area of dementia families and non-dementia families, dementia families spent more time than non-dementia families in instrumental daily life activities. The increase in the time for instrumental activities of daily living, including the time for caring for dementia patients, may lead to changes in time use for members of the family with dementia. By comparing the time usage by occupational area according to gender within the dementia families, it was possible to find out the difference between male and female instrumental daily activities and health care time use. The difference in time use according to gender showed that women took on more caring roles than men, and actually spent more time than men. Conclusion The amount of time used between the dementia family and the non-dementia family differed according to the group and gender. These results suggest that dementia can cause changes in the time usage of dementia family. Therefore, this study recognizes the need for efficient use of time for dementia families and suggests that there is a need for a balanced use of time according to gender.

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Shifting of Centricity: Qualitative Meta Synthetic Approach on Caring Experience of Family Members of Patients with Dementia

Cited by 12 publications

References 19 publications

Caring experiences of family caregivers of patients with heart failure: A meta-ethnographic review of the past 10 years

Caring experiences of family caregivers of patients with heart failure: A meta-ethnographic review of the past 10 years

Family Caregiver Suffering in Caring for Patients with Amyotrophic Lateral Sclerosis in Korea

Time usage analysis according to occupational area and satisfaction level in family caregivers of dementia patients

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