Towards Cultural Adequacy of Experience-Based Design: A Qualitative Evaluation of Community-Integrated Intermediary Care to Enhance the Family-Based Long-Term Care for Thai Older Adults
Abstract
:1. Introduction
1.1. Physical Spaces of the CIIC
1.2. The COVID-19 Pandemic and the Implementation of the CIIC Project
2. Materials and Methods
2.1. Ethics, Study Design, and Participants
2.2. Data Analysis
3. Results
3.1. Theme 1: Becoming a Good Caregiver
3.2. Theme 2: Stretching to the Limit
3.3. Theme 3: Taking Care of One’s Health: Healthy Lifestyles Applied and Better Health Realized by the Caregivers
3.4. Theme 4: Roles of CIIC in Addressing Gaps in Care and Strengthening Care Systems
4. Discussion
4.1. Implications of Theme 1: “Becoming a Good Caregiver” for CIIC
4.2. Implications of Theme 2: “Stretching to the Limit” for CIIC
4.3. Implications of Theme 3: “Taking Care of One’s Health” for CIIC
4.4. Implications of Theme 4: “Roles of CIIC in Addressing Gaps in Care and Strengthening Care Systems” for CIIC
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Themes Summary | Participants’ Quotes | |
---|---|---|
Theme 1 | Becoming a good caregiver | |
Subtheme 1 | A responsibility to care: family caregivers began with being assigned a responsibility to care for dependent older adults regardless of their readiness or preparation to take on this duty of care. | “He is my husband. It’s my responsibility to take care of him. It can’t be the others.” (FCG ID 1) |
“I am tired of caregiving, but I am happy as I must return for spending her life to take care of her children when we were young.” (FCG ID 2) | ||
“It’s a family responsibility. We can’t deny it or expect others to do it for us.” (FCG ID 8) | ||
Subtheme 2 | Mastering oneself as a caregiver: The process of caregiving mastering is not static. Rather, it is quite dynamic and dependent upon the changing needs of older adults as their illnesses change. | “Every day is a learning day for me. I learned about the disease that he got. I learned about his medications. I learned everything that I need to learn to look after him well. I practiced and learned many skills to help him with daily tasks. It’s a lot easier now [than in the past] to help him through the day.” (FCG ID 1) |
“You get better at it [caregiving task] the next time you do it. I felt it was challenging at the beginning, but I think I’m pretty good at it now.” (FCG ID 4) | ||
Subtheme 3 | Applying the knowledge and skills in caregiving: the acquired knowledge and caregiving skills are sometimes applied through a trial-and-error process. | “The doctors and nurses would give us a lot of advice and knowledge. But we need to make it fit with the care recipient. It’s not always like what the doctors said to us.” (FCG ID 4) |
“Our house is very small, and it is packed with our stuff. There are steps all over the place. Getting around in a wheelchair inside the house is almost impossible. We need to use tandem walking quite a lot to help her move around the house. We tied a rope around her waist to make tandem walking easier and safe [so she would not fall].” (FCG ID 3) | ||
Subtheme 4 | Knowing the care recipients: it is one of the critical aspects for the quality of care for older adults with long-term complex care needs. | “He was barely talking. So, we had to guess what made him look unhappy and restless. We had to try different things to help him. Many things didn’t work. But finally, we would find something that worked for him. You need to know the older people. I think each person is unique. You must be a good observer and attentive to care for them well.” (FCG ID 1) |
“When she frowns and moves her legs, I know there must be something wrong with her. I would check whether she wet or soil herself first as this is often the case when she behaves like this.” (FCG ID 10) | ||
Theme 2 | Stretching to the limit | |
Subtheme 1 | Everything is centered around the care recipient: the needs of care recipients are prioritized over other needs. | “It’s always about her. It [caring for her] is the priority. We must settle her care first before we do something else.” (FCG ID 2) |
“Everyone asks about their patient but not so much about us [caregivers]. They would ask whether the care recipient progresses well or has any problems. I understand that we have very limited time during each consultation [at the hospital] so we need to focus on the care recipient.” (FCG ID 3) | ||
Subtheme 2 | Meeting caregiving burdens and demands at all costs | “We would do everything to keep him well. Anything that we can afford even though it is hard. Physically, financially, and emotionally.” (FCG ID 9) |
“My dad has been bedridden for about three years, and I used all my time and efforts to take care of him. It was very difficult for me to make proper positioning, transfer, and mobility before I got specific guidance from the CIIC team. Thank you and because of the improvement in caregiving skills, I can spare some time to take care of myself every day.” (FCG ID 4) | ||
“I need to sacrifice a lot. I had to quit my job in the city to be her caregiver. Now I don’t have a monthly salary. I opened a food kiosk at home so I can be with her and have some regular income.” (FCG ID 3) | ||
Subtheme 3 | Impacts of caregiving on caregivers and family functioning | “I suddenly became jobless when both of my parents got bedridden as I am the only child to take care of them. I did not feel guilty about quitting my job, but I was exhausted from caregiving.” (FCG ID 8) |
“I don’t have time to myself. In fact, the whole family doesn’t have time for us. We have no life outside our home. No more gatherings with friends. It can be tough sometimes.” (FCG ID 9) | ||
“There are ups and downs all the time. This was especially at the beginning of her illness. A lot was happening then. There were times when I felt that it was too much. I am coping much better now but I can expect a time when I feel low.” (FCG ID 2) | ||
“We have to juggle the care tasks and other things. It’s a constant planning and decision making.” (FCG ID 7) | ||
Theme 3 | Taking care of one’s health | |
Subtheme 1 | Healthy lifestyles applied and better health realized by caregivers | “Taking care of others has taught me a lot about the importance of having good health. If you don’t want to go down that path [being bedridden], you must look after your health very well. I am careful about what I eat. I try to go for a walk whenever I have time.” (FCG ID 5) |
“I could get advice from the CIIC team not only for specific caregiving skills such as bed bathing, occupied bed making, etc. but also nutrition advice on how to prepare a balanced diet for my mother”. (FCG ID 2) | ||
“I have my blood pressure taken by the volunteer as often as I can. I weigh myself at least once a week, so I know what my body is like.” (FCG ID 8) | ||
“One of the good things about being a caregiver is that I have better health. My muscles are much firmer now, and I feel a lot healthier because of following the healthy lifestyle.” (FCG ID 10) | ||
Theme 4 | Roles of CIIC in addressing gaps in care and strengthening care systems | |
Subtheme 1 | Fragmentation in formal health and social services: having multiple health providers also contributed to fragmentation in care as there was no overall governing body responsible for the long-term care of older people. | “There were many hurdles that we had to go through to get things we wanted for the older adult. We [the family] had to navigate the [health and social] services by ourselves. The services were there but we needed to connect them. To do that, we had to communicate with different people again and again. You know, there are two separate systems that we must go through. It’s not a smooth process at all.” (FCG ID 3) |
“Information from different health providers can be inconsistent. It’s up to us to decide which one is right for us. No one knows the whole picture of the care recipient. They seem to know parts of it, so it’s hard to get everything done in one go.” (FCG ID 4) | ||
Subtheme 2 | A dedicated and devoted volunteer is instrumental in care management | “Without the volunteer, our family would not be able to stand on our own feet now. She is so supportive. She is always there for us. She helps talk to the local government and visits us often. She is the one who cares enough to ask us how we are.” (FCG ID 1) |
“She is the one who makes sure patients and families in need of support get help. She has a strong sense of community where everyone cares for everyone. She helps promote our foods in the community so that we can have a good sale and earn more money.” (FCG ID 4) | ||
“I am proud of myself to be a health care volunteer to assist burdened families with dependent older adults. I assumed that this is our duty to take care of each other in the local community.” (Volunteer ID 4) | ||
“I am a retired person and I have plenty of free time to take care of my neighbors. I am happy to contribute some good things to my village.” (Volunteer ID 1) | ||
“When I noticed that she locked her father in bed, I know it is not good care. I think it is our responsibility to help burdened families in our community.” (Volunteer ID 6) | ||
“I am happy as I can do CIIC exercise and encourage my friends to do so.” (Volunteer ID 8) | ||
Subtheme 3 | Acceptability of the CIIC: The proposed CIIC and its services are very well appreciated and accepted by families, older adults, and volunteers. The CIIC center is viewed as an alternative to respite care, not as a replacement for family care. Home-based care is still the best option for families and older adults. | “Thank you. I feel pity for my son for taking care of me all the time. I want him to take a break. I am pleased to hear that I can stay there for one week.” (Older adult ID 4) “It is located within our village. I think I can stay happily there for a short time but not for a long time.” (Older adult ID 5) “I don’t want to stay there. I have decided to stay at home until my last breath. Please come to help my daughter who is tired of caregiving.” (Older adult ID 8) “Is it expensive? I noticed she is using a lot of money for buying things for me including diapers and skin lotions. If it is free of charge care, I want to stay there for a while.” (Older adult ID 9) “When I heard about the CIIC project where we can send our dependent care recipients for a short-term stay, I felt a big relief, even though I could not have a chance to use their respite care service because of the COVID-19 situation.” (FCG ID 8) |
“I think free-of-charge care can be difficult to sustain long term. You better charge the rich family to use your CIIC center services.” (FCG ID 3) | ||
“I like the idea of CIIC center as it is located within our village and my mother may not feel being away from home.” (FCG ID 7) | ||
“I felt encouraged when I heard that I could send my mother to your care center temporarily. Thank you.” (FCG ID 10) |
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Aung, T.N.N.; Lorga, T.; Moolphate, S.; Koyanagi, Y.; Angkurawaranon, C.; Supakankunti, S.; Yuasa, M.; Aung, M.N. Towards Cultural Adequacy of Experience-Based Design: A Qualitative Evaluation of Community-Integrated Intermediary Care to Enhance the Family-Based Long-Term Care for Thai Older Adults. Healthcare 2023, 11, 2217. https://doi.org/10.3390/healthcare11152217
Aung TNN, Lorga T, Moolphate S, Koyanagi Y, Angkurawaranon C, Supakankunti S, Yuasa M, Aung MN. Towards Cultural Adequacy of Experience-Based Design: A Qualitative Evaluation of Community-Integrated Intermediary Care to Enhance the Family-Based Long-Term Care for Thai Older Adults. Healthcare. 2023; 11(15):2217. https://doi.org/10.3390/healthcare11152217
Chicago/Turabian StyleAung, Thin Nyein Nyein, Thaworn Lorga, Saiyud Moolphate, Yuka Koyanagi, Chaisiri Angkurawaranon, Siripen Supakankunti, Motoyuki Yuasa, and Myo Nyein Aung. 2023. "Towards Cultural Adequacy of Experience-Based Design: A Qualitative Evaluation of Community-Integrated Intermediary Care to Enhance the Family-Based Long-Term Care for Thai Older Adults" Healthcare 11, no. 15: 2217. https://doi.org/10.3390/healthcare11152217
APA StyleAung, T. N. N., Lorga, T., Moolphate, S., Koyanagi, Y., Angkurawaranon, C., Supakankunti, S., Yuasa, M., & Aung, M. N. (2023). Towards Cultural Adequacy of Experience-Based Design: A Qualitative Evaluation of Community-Integrated Intermediary Care to Enhance the Family-Based Long-Term Care for Thai Older Adults. Healthcare, 11(15), 2217. https://doi.org/10.3390/healthcare11152217