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

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.

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Co-Designing and Evaluating a Self-Care Curriculum of an App for Chinese Immigrant Caregivers

Innovation in Aging ◽

10.1093/geroni/igaa057.1639 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 507-508

Author(s):

Ying Wang ◽

Mandong Liu ◽

Iris Chi

Keyword(s):

Mental Health ◽

United States ◽

Physical Health ◽

Self Care ◽

The United States ◽

The Self ◽

Community Resources ◽

Chinese Immigrant ◽

Knowledge And Skills ◽

Support Resources

Abstract Chinese immigrant caregivers face unique self-care difficulties in the United States due to language barriers, cultural isolation, and occupational stress. This study aimed to conduct a formative evaluation on a caregiver self-care curriculum of an app designed for Chinese immigrants in the United States. Using a co-design approach in 2019, 22 Chinese immigrant caregivers in Los Angeles county were recruited through purposive sampling method. The directed content analysis was adopted to analyze the qualitative data using NVivo 12.1.0 software. We organized the findings under two main contents: self-care and caregiving. Three categories were identified under the self-care content: physical health, emotional and mental health, and support resources. Sixteen subcategories under physical health (e.g., dietary supplements), five subcategories under emotional and mental health (e.g., depression) and eight subcategories under support resources (e.g., support and networking group, senior center) are suggested. Two categories were identified under the caregiving content: caregiving knowledge and skills, and community resources. Fourteen subcategories under caregiving knowledge and skills (e.g., care assessment) and six subcategories under community resources (e.g., medical emergency call) were mentioned. With this useful information, we could further refine the self-care curriculum to be more linguistically, culturally and occupationally sensitive for Chinese immigrant caregivers. Empowerment approach for enhancing the ability to caregiving and self-care should be emphasized in content design for immigrant caregivers. The co-design approach is crucial for planning of the program and intervention curriculum to improve understanding of the users’ needs and better cater them.

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Self-Care Needs and Technology Preferences among Parents in Marginalized Communities: A Participatory Design Study (Preprint)

10.2196/preprints.27542 ◽

2021 ◽

Author(s):

Weichao Yuwen ◽

Miriana Duran ◽

Minghui Tan ◽

Teresa M. Ward ◽

Sunny Chieh Cheng ◽

...

Keyword(s):

Low Income ◽

Participatory Design ◽

Self Care ◽

Design Approach ◽

Latino Parents ◽

Care Needs ◽

Marginalized Communities ◽

Unpaid Care ◽

Care Practices ◽

Low Income Families

BACKGROUND Ten million parents provide unpaid care to a child living with a chronic condition such as asthma, and a higher percentage of these parents are among marginalized communities, including racial and ethnic minority and low-income families. There is an urgent need to develop technology-enabled tailored solutions to support the self-care needs of these parents. OBJECTIVE To use a participatory design approach to describe and compare Latino and non-Latino parents’ current self-care practices, needs, and technology preferences when caring for children with asthma in marginalized communities. METHODS Participatory design approach was used to actively engage intended users in the design process and empower them to identify needs and generate design ideas to meet those needs. RESULTS Thirteen stakeholders participated in three design sessions. We described Latino and non-Latino parents’ similarities in self-care practices and cultural-specific preferences. When designing technologies for self-care, non-Latino parents focused on improving caregiving stress through journaling, daily affirmations, and tracking feelings, while Latino parents focused more on relaxation and entertainment. CONCLUSIONS Considerations need to be taken beyond language differences when developing technology-enabled interventions for diverse populations. The community partnership approach strengthened the study’s inclusive design.

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Discerning Unmet Self-Care Need and Co-Design of a Mobile App With Chinese Immigrant Caregivers to Promote Self-Care

Innovation in Aging ◽

10.1093/geroni/igaa057.088 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 27-27

Author(s):

Kexin Yu ◽

Haojun Jiang ◽

Mandong Liu ◽

Shinyi Wu ◽

Maryalice Jordan-Marsh ◽

...

Keyword(s):

Mobile Technology ◽

Self Care ◽

The United States ◽

Mobile App ◽

Chinese Immigrant ◽

Work Related ◽

Care Recipients ◽

Raising Awareness ◽

Care Information ◽

Technology Tool

Abstract Immigrant caregivers are the backbone for supporting frail older adults in the United States. However, caregivers' own self-care need is often neglected, especially among racial/ethnic minorities. In the current study, a co-design approach was employed to develop a mobile app for raising awareness and promoting behaviors of self-care among Chinese immigrant caregivers. Individual in-depth interviews conducted through two co-design phases, i.e., conceptual design and prototype design. Twelve caregiver participants voiced their unmet self-care need and expressed their opinions about adopting the co-designed mobile App to access self-care information. The unmet self-care need includes both self-care barriers and supportive resources, and App features the caregivers wish to have. Three self-care barriers were identified in the co-design interviews, including culture-specific stressors, immigrant-status related challenges, and work-related restrictions. Caregiver participants expressed that they wish the care recipients could have education on the boundaries between them and a caregiver. Additionally, the participants reported wanted to learn about handling care emergencies with the co-design app and would like to see short videos and stories included in the App. Participants expressed mixed opinions towards adopting mobile technology – while most of the participants appreciated the content provided, some were concerned that learning with mobile technology could add to their burdens, and technical difficulties could prevent them from using the App. Designing the App to be engaging and fun emerged as highly desirable. The co-design process appears to be beneficial in having participants to articulate both current self-care barriers and preference for a mobile technology tool.

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A Design of One's Own: Towards Participatory Design in the US

DAIMI Report Series ◽

10.7146/dpb.v20i375.6607 ◽

1991 ◽

Vol 20 (375) ◽

Cited By ~ 2

Author(s):

Joan Greenbaum

Keyword(s):

United States ◽

System Design ◽

Participatory Design ◽

The United States ◽

Design Approach ◽

The Us

The Participatory design movement in the United States is, in many ways, growing out of the Scandinavian or worker-oriented design approach in Europe. This article discusses some of the roots of this movement and goes on to focus on ways that a 'home grown', or typically American brand of pragmatic system design can develop in the US.

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Care Me Too, a Mobile App for Engaging Chinese Immigrant Caregivers in Self-Care: Qualitative Usability Study

JMIR Formative Research ◽

10.2196/20325 ◽

2020 ◽

Vol 4 (12) ◽

pp. e20325

Author(s):

Mandong Liu ◽

Tongge Jiang ◽

Kexin Yu ◽

Shinyi Wu ◽

Maryalice Jordan-Marsh ◽

...

Keyword(s):

User Experience ◽

Associate Degree ◽

Self Care ◽

The United States ◽

Mobile App ◽

Chinese Immigrant ◽

Face To Face ◽

Home Testing ◽

App Design ◽

Chinese Caregivers

Background Caregiving and self-care are challenging for Chinese immigrants in the United States due to limited accessible support and resources. Few interventions exist to assist Chinese immigrant caregivers in better performing self-care. To address this gap in the literature, our team developed the Care Me Too app to engage Chinese immigrant caregivers in self-care and conducted a user experience test to assess its usability and acceptability. Objective This paper aims to report the results of the app’s usability and acceptability testing with Chinese immigrant caregivers and to solicit participants’ feedback of the app design and functions. Methods A total of 22 Mandarin-speaking Chinese caregivers participated in the study, which consisted of 2 parts: the in-lab testing and the 1-week at-home testing. In-depth face-to-face interviews and follow-up phone interviews were used to assess user experience of the app’s usability and acceptability and to solicit feedback for app design and functions. Directed content analysis was used to analyze the qualitative data. Results Among the 22 participants, the average age was 60.5 (SD 8.1) years, ranging from 46 to 80 years; 17 (77%) participants were women and 14 (64%) had an associate degree or higher. Participants reported uniformly positive ratings of the usability and acceptability of the app and provided detailed suggestions for app improvement. We generated guidelines for mobile health (mHealth) app designs targeting immigrant caregivers, including weighing flexibility versus majority preferences, increasing text sizes, using colors effectively, providing engaging and playful visual designs and functions, simplifying navigation, simplifying the log-in process, improving access to and the content on the help document, designing functions to cater to the population’s context, and ensuring offline access. Conclusions The main contribution of this study is the improved understanding of Chinese caregivers’ user experiences with a language-appropriate mHealth app for a population that lacks accessible caregiving and self-care resources and support. It is recommended that future researchers and app designers consider the proposed guidelines when developing mHealth apps for their population to enhance user experience and harness mHealth’s value.

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Care Me Too, a Mobile App for Engaging Chinese Immigrant Caregivers in Self-Care: Qualitative Usability Study (Preprint)

10.2196/preprints.20325 ◽

2020 ◽

Author(s):

Mandong Liu ◽

Tongge Jiang ◽

Kexin Yu ◽

Shinyi Wu ◽

Maryalice Jordan-Marsh ◽

...

Keyword(s):

User Experience ◽

Associate Degree ◽

Self Care ◽

The United States ◽

Mobile App ◽

Chinese Immigrant ◽

Face To Face ◽

Home Testing ◽

App Design ◽

Chinese Caregivers

BACKGROUND Caregiving and self-care are challenging for Chinese immigrants in the United States due to limited accessible support and resources. Few interventions exist to assist Chinese immigrant caregivers in better performing self-care. To address this gap in the literature, our team developed the Care Me Too app to engage Chinese immigrant caregivers in self-care and conducted a user experience test to assess its usability and acceptability. OBJECTIVE This paper aims to report the results of the app’s usability and acceptability testing with Chinese immigrant caregivers and to solicit participants’ feedback of the app design and functions. METHODS A total of 22 Mandarin-speaking Chinese caregivers participated in the study, which consisted of 2 parts: the in-lab testing and the 1-week at-home testing. In-depth face-to-face interviews and follow-up phone interviews were used to assess user experience of the app’s usability and acceptability and to solicit feedback for app design and functions. Directed content analysis was used to analyze the qualitative data. RESULTS Among the 22 participants, the average age was 60.5 (SD 8.1) years, ranging from 46 to 80 years; 17 (77%) participants were women and 14 (64%) had an associate degree or higher. Participants reported uniformly positive ratings of the usability and acceptability of the app and provided detailed suggestions for app improvement. We generated guidelines for mobile health (mHealth) app designs targeting immigrant caregivers, including weighing flexibility versus majority preferences, increasing text sizes, using colors effectively, providing engaging and playful visual designs and functions, simplifying navigation, simplifying the log-in process, improving access to and the content on the help document, designing functions to cater to the population’s context, and ensuring offline access. CONCLUSIONS The main contribution of this study is the improved understanding of Chinese caregivers’ user experiences with a language-appropriate mHealth app for a population that lacks accessible caregiving and self-care resources and support. It is recommended that future researchers and app designers consider the proposed guidelines when developing mHealth apps for their population to enhance user experience and harness mHealth’s value.

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A Participatory Design Approach to Develop a Web-Based Self-Care Program Supporting Early Rehabilitation among Patients after Total Laryngectomy

Folia Phoniatrica et Logopaedica ◽

10.1159/000441251 ◽

2016 ◽

Vol 67 (4) ◽

pp. 193-201 ◽

Cited By ~ 10

Author(s):

Ingrid C. Cnossen ◽

Cornelia F. van Uden-Kraan ◽

Simone E.J. Eerenstein ◽

Rico N.P.M. Rinkel ◽

IJke J. Aalders ◽

...

Keyword(s):

Total Laryngectomy ◽

Participatory Design ◽

Self Care ◽

Care Program ◽

Early Rehabilitation ◽

Design Approach ◽

Web Based

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The Portuguese Performance Assessment of Self-Care Skills Measure: Validity and Reliability

OTJR Occupation Participation and Health ◽

10.1177/15394492211021309 ◽

2021 ◽

pp. 153944922110213

Author(s):

Pedro L. Ferreira ◽

Ana L. Simões ◽

Marília Dourado ◽

Margo B. Holm ◽

Joan C. Rogers

Keyword(s):

Performance Assessment ◽

Self Care ◽

The United States ◽

Factor Analyses ◽

Validity And Reliability ◽

Portuguese Population ◽

Perfect Agreement ◽

Portuguese Version ◽

And Gender ◽

Effective Assessment

Performance Assessment of Self-Care Skills (PASS) is a performance-based scale developed in the United States. Because of cultural differences, a Portuguese version was developed, then validated in the Portuguese population and tested ensuring reliability. The objective of this study was to create and test psychometric properties of a Portuguese version of PASS. A linguistic validation on older adults with physical/cognitive disabilities enabled us to validate P-PASS. Some original tasks were changed. Data were analyzed by PASS constructs (independence-safety adequacy), age, and gender. Construct validity (known-group analyses, factor analyses), with 98 individuals yielded excellent results. Reliability between two observers for 30 participants yielded almost perfect agreement for all three constructs. Independence scores were highest, followed by safety and adequacy. Men presented greater independence, as well as participants <60 years. We obtained results comparable with the original version. Conclusion. P-PASS is valid and reliable for the Portuguese population, enabling effective assessment of function and measurement of health outcomes.

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