An Evaluation of Self-Care and Caregiving Training Curriculum Content for Chinese Immigrant Caregivers: A Participatory Design Approach

Abstract

Immigrant caregivers face unique difficulties in self-care and caregiving practices in the United States. Our aim was to conduct an evaluation of the content of a training curriculum app designed for Chinese immigrant caregivers based on the Body-Mind-Spirit model. An app prototype was developed, and a sample content was examined by prospective users accessing it on their smartphones. Using a participatory design approach, 22 in-depth interviews were conducted with Chinese immigrant caregivers in Los Angeles in 2019, and feedback for spirituality content was sought from an independent expert. Caregivers provided feedback for three self-care categories—body, mind, and community resources—and two caregiving content categories—knowledge and skills, and community resources. From this feedback, five areas for designing training curriculum content emerged: caregiving stress, lifestyle and health behavior change, access to community resources, death education and end-of-life care, and spiritual care.

Keywords

caregiving stress lifestyle change health behavior community resource death education end-of-life spirituality

Introduction

The caregiving literature lacks attention to empower ethnic minorities who face unique difficulties identifying and navigating support resources in the complex health care system in the United States. Stereotyped as the “model minority” (Wong et al., 1998), caregiving and service needs of Asian Americans are often overlooked. Asian American caregivers perform a higher number of caregiving tasks, have been more depressed, have had worse physical health, and used less formal support than Whites (Montenegro, 2014; Pinquart & Sörensen, 2005).

Chinese comprise the largest Asian American group in the United States, with a population of 5.2 million in 2017 (U.S. Census Bureau, 2017). Language barriers and cultural practices heighten Chinese immigrants’ challenges in self-care and caregiving practices. Chinese immigrant caregivers reported language as a barrier to formal health care service use (San Francisco Department of Aging & Adult Services, 2019). Chinese culture emphasizes caring for older adults, filial piety, and guanxi (relationships; Cheung et al., 2009; Wu et al., 2020). Chinese family caregivers claimed caring for older generations to be rewarding (Miyawaki, 2015); however, adverse outcomes of filial piety, including caregiving stress, role strain, and poor physical health, have also been reported (Dong, 2016). Chinese nonfamily caregivers (e.g., home care workers) experience indistinct boundaries between themselves and care recipients arising from guanxi implications and the culture of respecting older adults (Lu, 2017). This can mean shifts from an occupational relationship to a personalized connection (J. Wu et al., 2020), which creates similarities between Chinese family and nonfamily caregivers. The complexity of relationships in Chinese culture could bring unique challenges and burden to both types of caregivers (Lu, 2017). These issues warrant more culturally and linguistically appropriate self-care and caregiving support for Chinese immigrant caregivers. However, in a previous evidence mapping study, investigators found only seven caregiver training programs for Chinese immigrants in 2016 (Chi et al., 2018). Among these programs, all were in-person training; most did not include self-care topics.

To address this population’s self-care and caregiving needs, our team—consisting of researchers and clinicians from social work, nursing, gerontology, and engineering—developed and pilot tested an in-person training program for them. While delivering the training, we encountered difficulties in recruitment and scheduling because of demanding daily schedules and the dispersed geographic locations of our target population. Our multidisciplinary team recognized the potential of a digital resource (Kovaleva et al., 2019; McColl et al., 2014), with a curriculum adapted to this group’s needs.

The significance of incorporating potential users as equal partners in designing a mHealth app for a behavior change program has been well illustrated in design literature (National Institute of Adult Continuing Education [NIACE], 2014; Woods et al., 2017). When users and experts collaborate, the curriculum becomes more inclusive and responsive to users’ situations and needs. Potential users being given responsibilities in program design enhances user empowerment, builds user ownership, and promotes user positive changes to improve their situations (NIACE, 2014). Therefore, the team conducted an app prototype participatory design with a group of Chinese immigrant caregivers and an independent expert to obtain their insights into evaluating and enhancing the curriculum content. Their feedback on how to improve the content is reported in this article.

Method

Curriculum Content

The curriculum content, based on the culturally appropriate Body-Mind-Spirit (BMS) model (C. Chan et al., 2002), covers topics to address a caregiver’s holistic needs:

Self-care (e.g., caregivers’ roles and boundaries, diet, exercise, sleep, medication management, problem-solving skills, spiritual care);

Caregiving (e.g., information on proper concept of old age, communication skills, Alzheimer’s disease, legal issues);

BMS exercise videos (e.g., indoor physical exercises, self-massage, breathing and relaxation exercises, meditation);

Community resources inventory of available national and local self-care and caregiving resources (e.g., Alzheimer’s Association, Family Caregiver Alliance).

Participants and Procedures

All activities were approved by the university’s Institutional Review Board (UP-18-00192). Through purposive sampling, caregivers were recruited in Los Angeles with collaboration of community partners. The inclusion criteria were as follows: (a) 18 years old or above, (b) read and write Chinese, (c) have been caring for someone aged 65 years or above for at least 3 months and expected to care for the same person in the foreseeable future, (d) assist the care recipient with at least one activity of daily living or medical task, and (e) have an iPhone (loaners were available). After signing the informed consent, the recruited caregivers participated in an in-person app prototype testing session that lasted for 1 to 1.5 hr, conducted in Mandarin. An interview guide with open-ended questions was used. Example questions included, “In what ways is this topic’s content helpful for you as a caregiver? How to refine the content to make it more helpful? What can be added?” A US$50 gift card was provided after finishing the session. Each interview was conducted by two native Mandarin speakers, who were graduate students trained by senior researchers on the team, one serving as the interviewer and the other taking the note. We uploaded all self-care, BMS videos, and community resources content; due to time constraints for the prototype development and testing, we were not able to upload all caregiving content for participants to review, and the two topics uploaded were “proper concept of old age” and “communication with older adults.”

Analysis

All in-person caregiver interviews were recorded and transcribed verbatim by two graduate students who were naïve to the study. Both were trained and supervised by senior researchers on the team. One bilingual investigator, who has intensive experience in qualitative research and was naïve to the program when she conducted the first round of coding, used the directed content analysis method proposed by Hsieh and Shannon (2005) to analyze the data in Chinese, under the initial coding scheme of (a) positive feedback, (b) suggestions for adding content, and (c) suggestions for refining content. Topics not in the curriculum but in which participants expressed an interest were categorized into “adding,” whereas existing topics where participants suggested revising were categorized into “refining.” After the first round of coding, she was informed of the BMS model, which was used to develop the curriculum content. She then reorganized codes from the first round to fit the model and identified new codes relevant to the model and discussed the coding results and uncertainties with the other two bilingual investigators at weekly meetings to obtain consensus. NVivo 12.1.0 software by QSR International was used. Due to page limitation, positive feedback that simply reinforced existing content is not presented here. The research team summarized findings in a table in Chinese and forwarded the table to participants for confirmation and further feedback, if any. The team learned that spiritual care content was welcomed by participants, but they felt it was difficult to comment because they had long viewed spirituality as equal to religion, so the spiritual care content was new for them to provide feedback. Thus, the team invited an independent expert, a certified Usui/Holy Fire Reiki Master and long-time practitioner of dharma and meditation from Gongsang Buddha Center in Los Angeles, to review and provide comments for spirituality-related materials and their connections to body and mind care. Based on the coding results, investigators developed tables and text for describing participants’ suggestions in English; tables and tests were then reviewed by a native English speaker, who is a senior researcher in the team. Confusions and disagreements were discussed through email and phone communications until a consensus was reached.

Findings

In total, 22 caregivers participated in this study. Their average age was 60.5 years (SD = 8.1 years), ranging from 46 to 80 years; 17 (77.3%) were females; 14 (63.6%) had an education level of associate degree or above; 16 (72.7%) were nonfamily caregivers, and six (27.3%) were family caregivers. Participants had lived in the United States for an average of 20.4 years (SD = 10.2 years, median = 19.5 years, range = 5–40 years). More than 63% spoke very little to no English.

Feedback for Adding or Refining Content on Self-Care

Three categories were identified under self-care content based on participants’ feedback: body, mind, and community resources. Suggestions for adding and refining content related to body and mind are summarized with example quotations in Table 1. Suggestions for what to add in self-care community resources are described in the text; there were no refining suggestions for self-care resources. Expert review details for spiritual care are presented in Table 2.

Table 1.

Feedback for Adding and Refining Content on Self-Care.

Category	Adding content		Refining content
Category	Subcategory	Quotation sample	Subcategory	Quotation sample
Body	Dietary supplement	I am worried that my daily dietary intake is not complete. So, isn’t it better to take some multivitamins? (F, 60 years)	Grains	I care about content on grains. (F, 58 years)
	Recipes	It would be better if you can provide simple recipes . . . that only take 3 or 5 min to make, so I can leave [for work] right away after eating. (F,60 years)	Protein and vitamins	I want to know what protein is and which food contains protein. Also, vegetables . . . Which vegetables contain vitamin A? Which contain vitamin E? (F, 64 years)
	Diabetes diet	I care about my diabetes . . . Because of diet or other reasons, I have diabetes. Nowadays, many people have diabetes . . . so this should be introduced. (M, 55 years)	Cooking oil selection	There are so many types of oil in the United States . . . Older adults’ bodies are deteriorating, and they can only eat certain types of oil, right? (M, 65 years)
	Diet records	You should write down what you eat every day, and what nutrition you have taken today . . . Recording these would be helpful. (F, 61 years)	Water intake	This did not say how many cups you can drink in a day and how to measure a cup. For example, how much water is in a cup that is flat? How much is in an ordinary cup? [I want to know more about] how to measure, so I can have a better understanding. (F, 60 years)
	Doctor consultation	After my MRI report came out . . . I felt a sense of fear. I would go to my primary care doctor and ask him to read it for me. (M, 55 years)	Physical exercise knowledge	I always thought caregiving work is the same as exercise. (M, 52 years)
			Exercise that prevents cardiovascular diseases	For example, patting the chest to prevent heart disease and other diseases. This [content] would be beneficial to everybody. (M, 70 years)
			Maintaining healthy habits	I often skip meals . . . I don’t pay much attention to it . . . It’s easier said than done [to have a healthy diet]. (M, 55 years)
			Cancer	After chemotherapy, my mouth festered, and I couldn’t eat or drink . . . I am interested in cancer [self-care] content. (M, 65 years)
			More exercise videos	If a topic is interesting, of course I will be intrigued to watch, such as new exercise videos . . . You can add more of these. (F, 60 years)
			More massage content	You can add some massage-related content, such as how to self-massage correctly, so I can massage myself when I am tired . . . What about the back, and the back of the hand? You can add more videos of these. (F, 60 years)
			More health-related articles	[You may add] some good articles [on health], especially those that you think are good articles. (M, 55 years)
Mind	Depression	Depression is particularly common among older people. I think . . . I’m getting depressed, too . . . Many people got depressed after living in the United States for a long-time. (M, 52 years)	Adjusting the mindset	[Through caregiving work] I’ve learned how to take care of myself. [Later on, when] other people take care of me, I would know how to adjust the mindset between the caregiver and me. I want to be a happy person when I’m getting old. (F, 63 years)
	Death education	Is it scary if we talk about death? (F, 60 years)	Stress relief	I sometimes want to go out and travel. For example, when there is a vacation . . . This is a good way for me to relieve stress. (M, 55 years)
			Coping with negative emotions	Since last year, she thought we [the caregivers] stole her stuff . . . I was very angry, extremely angry. (M, 70 years)

Note. F = female; M = male.

Table 2.

Feedback From Independent Expert for Refining and Adding the Spiritual Care Content.

Category	Detailed feedback
Refining content	1. A clearer definition of spirituality and its role in holistic health.2. The overview for BMS integrated self-care at the beginning of the curriculum for quicker understanding.3. Expectations for BMS exercise time listed in the manual: minimal should be 3 to 5 min, increased as preferred.4. Function for and benefits of each BMS exercise at the beginning of the instruction.5. Self-encouragement and gratitude journal exercise examples, to stimulate participants’ positive thinking in the subconscious mind before practicing.6. For five-element table, add details on color, taste, and food recommendations for nutrition planning and balancing yin-yang energy. For example, wood represents the taste of sourness, green color, and food such as spinach, kiwi, and green bean.7. More ways to improve sleep and reduce stress, such as foot bath with hot water and salt.8. Role of humor in establishing self-transcendence.
Adding content	1. Spirituality care benefits to body and mind, such as the power of compassion and forgiveness.2. Spirituality in end-of-life care, such as meaning of life, accepting and reducing the fear of death, relationship expression, and respect.3. Problem solving style examples, perhaps using a video in Chinese.4. Importance of spiritual self-care to care for psychosocial and spiritual need of older care recipients, which requires caregivers not only have effective listening skills but also have the self-awareness of their own spirituality.5. Spiritual self-care value in improving one’s own physical condition. From the traditional Chinese medicine viewpoint, the dynamic balance of energy is crucial to maintain physiological and emotion health.6. Acupressure point practices to stimulate energy flow.7. Natural healing methods, such as hugging trees, relaxing with bare feet on the grass for 5 min, and going outside for a 2-min sun bath.8. Six healing sounds for relaxation (“liu zi jue”).9. Bringing energy exercise (“zhao fu qi”).

Body

There were five suggestions for adding content and 11 suggestions for refining content (Table 1). Participants’ suggestions included diet and physical exercise requests. Regarding diet, participants proposed that future versions would elaborate on current diet-related content on grains, protein, vitamins, cooking oil, and water intake, while suggesting adding information about dietary supplements and easy-to-use recipes. Participants also recommended adding information on preventing and managing chronic diseases through diet, and adding dietary records to help caregivers monitor their health behaviors. For refinement, participants emphasized adding more physical exercise videos, self-massage content, and content on knowledge and exercises that can help prevent cardiovascular diseases.

Participants emphasized the importance of maintaining healthy habits. They reported a lack of motivation to perform healthy practices in their daily lives and suggested the curriculum should help them maintain healthy habits. They wanted the team to refine the content on cancer by providing more detailed information. Finally, participants reported they could not understand medical reports (e.g., magnetic resonance imaging [MRI]) and were worried about missing important disease-related information, so they suggested adding content on doctor consultation.

Mind

There were two suggestions for adding content and three suggestions for refining content. All participants confirmed their approval of the existing content, affirming that knowledge and skills for mind care must be included in a caregiver training curriculum to help them cope with work and life stress. Participants expressed a special interest in emotion management, hoping to see information on depression and refined content on adjusting mindset and on coping with negative emotions. In addition, participants mentioned the importance of death education. Although the death topic sounded intimidating to them, they believed death education was necessary in Chinese culture.

Community resources for self-care

One caregiver participant (F, 64 years) reported that the caregiving relationship provided them with a life meaning, but participants wanted to know more useful self-care information and resources and to expand their social networks. These included available social activities and events, nearby senior centers, the caregiver union, and cancer support groups. Here are examples of their expressed social needs and wishes:

I feel that we need a good [resource] to support caregivers. We support care recipients, but no one supports us . . . We do not have connections with a lot of [support] groups. (F, 63 years)

[I want to] meet with some good people in society whose opinion I value. (F, 49 years)

I used to be a volunteer, but I lost connection [to the organization] . . . Can you help me re-connect with them? (F, 63 years)

Spirituality

The independent expert in Asian-based spirituality rated the existing spiritual care content as helpful and culturally appropriate. Her suggestions for adding and refining are presented in Table 2.

To summarize, she suggested refining the following content: (a) a clearer definition of spirituality and its role in holistic health, (b) an overview for BMS integrated self-care at the beginning of the curriculum, (c) expectations for BMS exercise time, (d) function for and benefits of each BMS exercise at the beginning of the instruction, (e) self-encouragement and gratitude journal exercise examples, (f) five-element table to have details on color, taste, and food recommendations for nutrition planning and balancing yin-yang energy, (g) more ways to improve sleep and reduce stress, and (h) details on the role of humor in establishing self-transcendence.

The spirituality expert suggested adding the following content: (a) spirituality care benefits to body and mind, (b) spirituality in end-of-life care, (c) problem-solving style examples, (d) spiritual self-care importance to care for psychosocial and spiritual need of elderly care recipients, (e) spiritual self-care value in improving one’s own physical condition, (f) acupressure point practices, (g) natural healing methods, (h) six healing sounds for relaxation (liu zi jue), and (i) bringing energy exercise (zhao fu qi).

Feedback for Adding and Refining Content on Caregiving

Two categories were identified for feedback on caregiving: caregiving knowledge and skills, and community resources for caregiving. Feedback is summarized in Table 3.

Table 3.

Feedback for Adding Content on Caregiving.

Category	Subcategory	Quotation sample
Caregiving knowledge and skills	Basic caregiving knowledge	Care assessment. When you take care of an older adult, the first basic thing is to observe and assess them in different aspects, so you have a basic evaluation. When you take care of them, you should know whether to speak in a high or low voice, [their habits of] eating, and many other things . . . (F, 52 years)
	Basic caregiving knowledge	Daily caregiving guidance. For me as a caregiver, what I want to hear the most is you [app] telling me [the guidance], such as eight standards [to do things] . . . Whenever I do something, [just follow] Step 1, 2, 3, 4, 5, 6, 7. I will keep that in mind. (F, 52 years)
	General care skills	Bathing. Is there anything I need to pay attention to when I help an older adult bathe? (F, 61 years)
		Oral health. Do you have it here, the content on oral health? (M, 65 years)
		Dietary information for people with chronic diseases. [You may refine content on] why some people with diabetes would gain weight, and how to lose weight. Also, what is the best diet for people with diabetes? Which kinds of food can they choose? . . . And the diet for people with high blood pressure. It is common. (F, 60 years)
	Dealing with special conditions	Depression. I want to have a look [at the content on depression]. Lots of older adults are depressed. (M, 52 years)
		Caring for Alzheimer’s disease. I believe it is different to take care of people with Alzheimer’s disease compared with caring for ordinary people . . . It is important for a caregiver to know the differences in order not to get into trouble.
		End-of-life care. The hardest part of caregiving is when they know they are at the end-of-life, such as when having cancer . . . What is the most helpful is to assist them in problem-solving, whether it is about body, mind, or spirit. (F, 64 years)
		Elder abuse. The nursing home didn’t take good care [of my mom]. Sometimes it almost felt like an abuse . . . like when recently, my mom had a lot of blood on her head. (F, 60 years)
		Rehabilitation after hospital discharge. We have been through a lot. They [the care recipients] fell and couldn’t stand up again after coming back from hospital . . . I feel it wouldn’t work out [unless] with the necessary knowledge. (M, 70 years)
	Dealing with unexpected events	Handling unexpected incidents. Especially unexpected incidents . . . I have faced a lot, such as an older adult could not get up after a fall because of a fracture, or suddenly one lost sight . . . I have encountered all these situations. I really need much knowledge about them. (M, 70 years)
	Other	Sense of career achievement. My suggestion is that you provide participants with a sense of achievement . . . Yes, if they gain a sense of achievement, they would be more willing to use [the training app] [You should] let them feel proud of themselves. (F, 52 years)
	Other	Vocational support information. [You should provide us with] existing resources . . . Last time the XXX Caregiver Support Group provided a program with several sessions. (F, 63 years)
Community resources for caregiving	Emergency medical services	Sometimes when she did not feel comfortable, I had no idea what to do. (F, 58 years)
	Emergency medical procedures	Also, when you face an emergency . . . what are the basic medical emergency procedures? (F, 52 years)
	Benefits for older adults	For example, if you are 59 and half, would you be eligible for some benefits? [I mean] benefits for older adults, like Medicaid and Medicare. (M, 55 years)
	Legal aid	If I sue the nursing home, I will also need to sue the primary care doctor . . . What exactly should I do to sue them? I have no idea. (F, 60 years)

Note. F = female; M = male.

Caregiving knowledge and skills

There were 13 specific suggestions for adding content (Table 3) and two suggestions for refining content (described in the following text). Participants wanted the team to add basic yet crucial caregiving knowledge about care assessments and guidance on daily acts of caregiving. They also hoped for new content on general care skills, such as bathing, oral health, and diets for people with chronic diseases. Participants also felt it necessary to learn to deal with special conditions (e.g., rehabilitation after hospital discharge, depression, Alzheimer’s disease, elder abuse) and unexpected events (e.g., bone fractures, losing vision). Finally, some emphasized the importance of end-of-life care knowledge and skills, so that they could better facilitate discussion of death-related topics with care recipients. This not only applied to family caregivers but also to nonfamily caregivers because of the personal relationships they had formed with care recipients.

Other suggestions included adding content on a sense of career achievement and vocational support information. Participants wanted to gain a sense of career achievement through training and hoped that caregivers could increase self-acceptance and self-esteem for their caring work through vocational identity development and professional knowledge acquisition.

The only suggestion for this topic was with respect to communication skills, for which participants wanted to see more real-world cases specific to disagreements:

Some people are bad-tempered. I do care about him [the care recipient] . . . [but] he didn’t understand [the situations] and he was bad-tempered, [so] sometimes I felt wronged. (F, 68 years)

Community resources for caregiving

Four subcategories were identified under feedback specific to adding content (Table 3) and one suggestion for refining content. Participants were interested in knowing other support resources for older adults that were not listed in the current resource inventory, such as Medicare and Medicaid benefits, and legal aid. They also wanted to know emergency response protocols, as they reported facing unexpected situations during caregiving with which they did not know how to deal. They suggested adding content on emergency medical services and procedures and listing them at the front of the inventory, for quick reference. The information would need to include whom to call and what to say in a phone call when the care recipient has an emergency condition.

Meanwhile, many participants reported language as a huge barrier to accessing community resources. It was difficult for them to read information in English, so they hoped the team could translate some English community resources materials into Chinese. Here is one example:

I know people who have Alzheimer’s and I had taken care of some, so I feel this information is very important, especially information in Chinese. (F, 63 years)

Discussion

In this study, the team used a participatory design approach to evaluate the content of a self-care and caregiving training curriculum designed for Chinese immigrant caregivers. A total of 22 caregivers examined the proposed content. An independent expert provided feedback for spirituality content. Considering the participants’ suggestions were abundant but fragmented, we have incorporated their suggestions into five discussion topics: caregiving stress, lifestyle and behavior change, community resources access, death education and end-of-life care, and spiritual care. First, we emphasize the importance of coping with caregiving stress because caregiving stress is one of the most prominent health challenges caregivers face (Dong, 2016). Second, our participants confirmed they wanted attention to lifestyle and health behavior change for themselves, recognizing that unhealthy habits could lead to or worsen diseases and health status. Third, we identify the importance of providing a community resources inventory for a population that lacks such information. Finally, we highlight two topics where content may be essential to discuss among immigrant caregivers to increase the cultural sensitivity of the content: death education/end-of-life care and spiritual care.

Previous research confirmed that caregiving stress was reported to very likely damage the health of Chinese immigrant caregivers (Dong, 2016), and thus, there is a need to provide immigrant caregivers with substantial caregiving knowledge and skills to help decrease their stress. Caregiving can be rewarding, such as a sense of self-worth and mastery (Y. Lee & Choi, 2013), but it can also be challenging. Participants’ comments provided further evidence that a lack of caregiving knowledge, abilities, and support resources heightens challenges in caregiving as well as self-care practices among immigrant caregivers.

Considering sources of stress could be different as indicated by respondents, we recommend attention to the multilevel demands of caregiving by including basic caregiving knowledge (e.g., care assessment, daily care guidance), general care skills (e.g., bathing, caring for oral health), dealing with special conditions (e.g., Alzheimer’s disease, depression), and dealing with emergencies and unexpected events (e.g., bone fractures and vision loss). Also, we identified a need for gaining a sense of career achievement among formal, nonfamily caregivers. A lack of respect is one cause for their caregiving stress. Our participants hoped that caregiving jobs could be as respected as other helping professions and anticipated that receiving this formal training in the app could be a way to enhance their sense of career achievement and self-esteem. To the best of our knowledge, this topic has been absent in most caregiver training programs.

Our findings confirmed the need to pay attention to lifestyle and health behavior change to fully reflect the perspectives of BMS model and integrated health, besides caring for specific diseases. Unhealthy lifestyles and behaviors could lead to diseases (Ross et al., 2018). It is necessary to help caregivers establish healthy lifestyles and behaviors and improve their ability of self-care and health management. To achieve this, our curriculum highlighted prevention and intervention knowledge and practices that included diet, exercise, sleep, and medication management, to benefit caregivers’ overall well-being. In future, we suggest that when researchers design a caregiver training curriculum, much attention should be paid to lifestyle and health behavior change by providing up-to-date health information, behavior motivation (e.g., doctor consultation), and health monitoring skills (e.g., daily dietary records).

Respondents also indicated the necessity to highlight and improve content on accessibility of community resources. Their unfamiliarity with the social and health systems in the United States was perceived as affecting both their self-care and caregiving-related decision-making. Language as a barrier to access is a challenge faced by many immigrant caregivers (Kim & Keefe, 2010). Presenting a list of comprehensive community resources in the curriculum is crucial because support and outreach resources are vital for caregiver empowerment (Jones et al., 2011). In our study, the team initially provided direct links to websites of organizations that serve older adults and caregivers. However, not all the websites were in Chinese. During the app testing, the team received participants’ feedback that Chinese websites were a must, so the team began to act immediately. We changed the links to the Chinese page if one organization had the Chinese version of the website (e.g., Chinese American Coalition for Compassionate Care); if they did not have Chinese websites (e.g., Medicare and Medicaid), we searched for relevant information in Chinese (e.g., online documents) and will, in the next stage, add it next to the link to the organization’s English language website. Other times, the information could be very fragmented, such as how to call 911 if one is limited English proficient. After we gathered enough credible information, we created a document with a step-by-step guide to call 911 using Chinese and will add it to the next version of our curriculum. In addition, we identified that resources for connecting caregivers to others were a particular need because the caregiving workload often reduced social connections. There is a risk that caregivers may not receive positive emotional affirmations that moderate stress (Bolton et al., 2016). Thus, we propose that community resources should be included in the caregiver training app that increase caregiver interaction opportunities and emotional support. This can be done through virtual communication and connections resources, or in-person social activities resources.

One requested topic requiring culturally sensitive content is death education and end-of-life care. The training content for death education and end-of-life care must not only be culturally sensitive but also requires effective practice information to enhance caregivers’ abilities to communicate with care recipients. In this study, we found that caregivers expressed an interest in knowing more about death education and end-of-life care, even though they admitted that thinking about these topics was intimidating. In Chinese culture, death is viewed as taboo, something not to be openly discussed with others (Cheng et al., 2019). However, not discussing or planning in time leaves people unprepared for death and dying of themselves or their loved ones, resulting many times in unfinished business and regrets (M. C. Lee et al., 2018). Family-centered care is embedded in Chinese culture (M. C. Lee et al., 2014). However, in the literature, we reviewed death education and care planning programs for Chinese populations do not uniformly include family members, and few included formal, nonfamily caregivers. This is problematic for caregivers who noted that the families of recipients of care are often distant and they do not use formal end-of-life care services. In future, we plan to add more case scenarios and suggested solutions to help caregivers deal with real-world challenges when responding to the needs of care recipients who initiate death-related discussions. We will also incorporate suggestions from the spiritual care expert to add Chinese cultural dimensions to concepts such as meaning of life, accepting and reducing the fear of death, relationship expression, dignity, and respect. The intent is to support caregiver communication abilities to promote a “good death” and benefit caregiver’s own advance planning thoughts and conversations.

Another topic where content should be sensitive to the caregiver’s culture is with respect to spirituality and spiritual care. Participants’ and expert comments indicated that spirituality and spiritual care, as an essential part of the BMS model, should be better integrated into future caregiver training curriculum design. Although spirituality does not only refer to religion, our sample of Chinese immigrants tended to equate the two. Spirituality in Eastern cultures is rooted in “philosophies of perfection of interpersonal relationships (Confucianism), dissolution of self by following the Tao/the law of nature (Taoism), or denunciation of attachment and greed in selfhood (Buddhism)” (C. L. Chan et al., 2006, p. 825). Based on our interviews, we concluded that meaningful personal and social connections that immigrant caregivers pursue and experience in daily lives are essentially spiritual care. Moreover, we observed that important spiritual support for Chinese immigrant caregivers came from meaningful relationships of self-to-self and self-to-others. Caregivers often attach meaning to a caring relationship, that is, to be mindful of acceptance, forgiveness, gratitude, empathy, and compassion (Baugher, 2019). Regarding self-to-self relationships, caregivers could use gratitude and acceptance to reduce the negative impact of caregiving stress. Regarding self–other relationships, caregivers’ kindness and compassion could better provide person-oriented care for care recipients, and correspondingly, respect, dignity, value, and life meaning are awarded to caregivers. These concepts could be added in future caregiver training curricula that target populations who emphasize interpersonal relationships, not only relationships with the sacred. In addition, spiritual expert noted that caregivers’ spiritual care was combined with body and mind care in daily lives, such as, in diet, paying attention to color, taste, and food recommendations in the five-element table; in physical exercise, to improve meditation and energy exercise; and in psychological care, writing gratitude journal and self-affirmation statements. More importantly, following our expert’s advice, future versions of the app will include an introduction to BMS integration at the beginning of the curriculum, so that users can have a better understanding of this holistic care perspective and apply from the beginning their spirituality concepts and exercises to physical and psychological health management.

Implications for Practice and Research

There is a need for a methodological shift in research to use the participatory design approach to identify potential users’ needs and gain insight into effective curriculum design. It is usually assumed that professionals are “domain experts.” Caregivers ideally are recognized as experts on their own lives and most knowledgeable of their own needs and experience. In this study, we adopted the participatory design approach to combine professional knowledge and skills from experts (including the research team and an independent expert) and personal experience. This approach helped us identify not only caregivers’ preferred curriculum content but also self-care and caregiving needs which were not initially included by the research team. Thus, we call for adopting this approach when researchers and educators design caregiver training for caregiver populations in the future.

Our study validated our curriculum focus on this ethnic minority and on immigrant caregivers’ needs. Specially tailored training programs are needed for caregivers with different backgrounds. There are language issues and cultural beliefs specific to Chinese people and limited experience with community supports in the United States (Wu et al., 2020). To add culturally sensitive content, examples would be based on traditional Chinese medicine, and death education that builds on Chinese-specific beliefs about relationships and decision-making for both caregivers and care recipients. In addition, although the focus of this study is Chinese Americans, future research and practice should pay much attention to uniqueness of other racial/ethnic minority groups. Caregivers in general have demanding daily schedules, and designers of training curricula should take this into consideration to reduce caregivers’ learning burden and increase the usefulness of the training. For example, Chinese immigrant caregivers wanted BMS exercises that could be done with care recipients during work; diet-related content should include daily recipes that are simple and easy-to-follow; more BMS videos should be added and should be brief to cater to caregivers’ busy schedules; caregiving content should be highlighted to enhance formal, nonfamily caregivers’ sense of career achievement by providing formal caregiving knowledge training and vocational certification. Respondent feedback shed light on how to design practical and culturally sensitive training curricula for other caregiver populations.

Our study highlighted the importance of linguistically appropriate community resources and support to help ethnic minorities tackle self-care and caregiving challenges. Besides self-care knowledge training, health resources can help an individual achieve better health outcomes (Sheridan et al., 2011). Timely and adequate access to resources is critical to caregivers due to the nature of their work (Holland, 2017). For immigrants and ethnic minorities, we, and our participatory designers, advocate for language translation, attention to cultural context, elements of building respect, and provision of information on both informal and formal resources, social connections, and above all, self-care.

Limitations

This study is not without limitations. First, the clinical practice and previous research experience of the team provided access to the Chinese immigrant population. It is possible that other ethnic immigrant groups would highlight different needs. Second, our priority was inventorying needs in time to enrich app development and meet funding constraints. Therefore, we were not able to upload all curriculum content for our participants to review and provide feedback. A review of all topics might have triggered other content preferences in this user group. Third, because of purposive sampling method, the participants were highly motivated to participate, were smartphone savvy, and maybe more resourceful than other caregivers. As older populations in general were less likely to be online, our findings might not reflect needs of Chinese caregivers who were much older than our participants. In addition, we did not explore the acculturation level of our participants. It is possible that participants who were more acculturated might not be benefiting as much as those less acculturated because the former ones might already obtain enough support and resources from mainstream society. Finally, inviting the external expert for the spiritual care content was important, yet not consistent with the method used with caregiver participants. However, the team believes it is crucial to have thorough feedback for the spirituality-related content to further strengthen our curriculum content based on the BMS model, and thus the expert’s feedback was reported in this article together with caregivers’ opinions.

Conclusion

Few investigators have examined the unique needs and special challenges in health difficulties among Chinese immigrant caregivers and taken these into consideration when developing caregiver training. We found that Chinese immigrant caregivers yearned for health education to involve BMS content and assistance accessing community resources. Our respondents indicated that a caregiver self-care curriculum should include five aspects: caregiving stress, lifestyle and health behavior change, community resource support, death education and end-of-life care, and spirituality and spiritual care.

The participatory design approach was successful in developing a content base for training programs to improve understanding of and relevance to immigrant caregivers’ needs. Respondents unexpectedly linked stress to lack of respect and prestige for their work. Feedback indicated a value for spirituality independent of religion and an interest in practice details. Some aspects seen as unique to Chinese culture would have value for other populations.

Footnotes

Acknowledgements

The authors thank Maryalice Jordan-Marsh, PhD, for proofreading and editing.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was funded by the Southern California Clinical and Translational Science Institute (Grant 12-5176-3304), and Department of Adult Mental Health and Wellness, USC Suzanne Dworak-Peck School of Social Work (There is no number for the department funding).

Ethics

All activities had been approved by the University of Southern California Institutional Review Boards (UP-18-00192).

ORCID iD

Ying Wang

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