Cultural adaptation and evaluation of Namaste Care program for home-dwelling persons with dementia and their caregivers in China: a mixed-methods study protocol

doi:10.21203/rs.3.rs-4629082/v1

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Study protocol

Cultural adaptation and evaluation of Namaste Care program for home-dwelling persons with dementia and their caregivers in China: a mixed-methods study protocol

https://doi.org/10.21203/rs.3.rs-4629082/v1

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Background: The Namaste Care program is an evidence-based intervention proven effective for individuals with moderate to advanced dementia and their caregivers. To enhance its efficacy, the program will be adapted to align with Chinese culture.

Methods: A multi-stage, mixed-methods design comprising three stages and eleven steps will be implemented, incorporating comprehensive process evaluations. Outcome measures will include the quality of life and self-perceived burden for persons with dementia, as well as the quality of life, caregiving burden, caregiving capacity, attitudes towards caregiving, and positive perceptions of dementia for caregivers. These outcomes will be evaluated through a combination of qualitative feedback and specific quantitative measures collected at baseline (T0), immediately post-intervention(T1), and three-month post-intervention (T2). Linear mixed effects models will be employed to analyze the effects of intervention. Qualitative interviews will explore caregivers’ experiences, and thematic analysis will assess the acceptability of the intervention.

Discussion: A culturally adapted Namaste Care program is essential for implementing practical adjustments that accommodate local communities and cultural contexts.The expected outcomes will enhance the knowledge of non-pharmacological interventions for dementia care within the home setting.

Trial registration: This study was registered on 29 August 2023 at https://www.chictr.org.cn (identifier: ChiCTR2300075195).

dementia

caregiver burden

cultural adaptation

older adults

home-dwelling

non-pharmacological interventions

mixed methods

nurses

nursing

Dementia presents a global health challenge, affecting more than 55 million individuals worldwide, with over 60% residing in low- and- middle-income countries (LMICs) [1, 2]. This number is projected to triple by 2050 due to demographic changes toward an older population [3]. Dementia’s neurodegenerative nature leads to a decline in cognitive functions, severely disrupting daily life and necessitating extensive caregiver involvement [4]. Additionally, behavioral and psychological symptoms of dementia (BPSD), pain, and environmental factors further reduce the quality of life (QoL) of persons with dementia (PWD) [5], complicating caregiving and increasing their dependence on caregivers [6]. Although non-pharmacological interventions have shown effectiveness, their primary application in clinical settings and the lack of extensive research in home settings limit their broader application and accessibility [7]. Current research suggests that interventions targeting either caregivers or PWD exclusively are insufficient and do not fully address the specific needs of both parties, potentially exacerbating existing challenges [8]. In contrast, home-based, multi-component dyadic interventions involving caregivers and PWD have shown promising results, including reduced BPSD in PWD, decreased caregiver burden, and improved caregiver-PWD relationships [9]. The burden of dementia care is particularly pressing in China, which accounts for approximately 20% of the global cases [10]. The cultural norm of filial piety emphasizes home care [11], with over 96% of care delivered by untrained family members or nannies [12]. Over 80% of caregivers experience stress, anxiety, and depression [13], with studies in Hong Kong indicating a burnout rate of 15.5% among them [14]. The continuous demands of caregiving, along with personal career and social sacrifices, severely impact caregivers’ mental health and QoL [15].

China’s cultural and societal factors intensify the challenges faced by home caregivers, leading to significant knowledge and support gaps compared to institutional care [10]. These gaps often result in neglecting crucial components such as cognitive training and sensory stimulation, essential for enhancing PWD’s QoL. Additionally, institutional care is costly and usually temporary [16]. Therefore, there is an urgent need to develop comprehensive, long-term, low-cost support systems for home-based dementia care [17]. Research indicates that community nurses play a critical role in implementing dyadic non-pharmacological interventions and delivering essential training to caregivers [18]. While such training significantly enhances caregiver capabilities, there is no conclusive evidence that it improves caregivers’ attitudes toward PWD, enhances their own QoL, benefits PWD, or reduces the overall caregiving burden.

Need for culturally adapted Evidence-based intervention (EBI)

Initially developed in Western cultures, Namaste Care (NC) has demonstrated potential in improving the QoL and well-being of PWD [19]. However, its effectiveness depends on its alignment with local cultural and societal norms [20]. Considering China’s unique cultural, societal, and economic landscape, it is critical to adapt the NC program to these distinct factors [13]. Such adaptations address prevalent challenges and enhance opportunities within dementia care in China [21]. The study emphasizes the necessity of adapting EBI initially developed in high-income countries for application in China. Such adaptation ensures that interventions are feasible, acceptable, person-centered, and congruent with local care systems, especially in LMICs. This paper details the process of culturally adapting the NC program to the Chinese context and describes the planned evaluation of its acceptability, feasibility, and preliminary efficacy.

2.1 Aims

The primary aims of this study are: (a) to adapt the NC program to the cultural context of the Chinese community, ensuring its cultural suitability and relevance; (b) to assess the acceptability, feasibility, and preliminary efficacy of the culturally adapted Namaste Care Home Program (NCHP) among PWD and caregivers. This assessment will focus on its effects on the QoL and self-perceived burden for PWD. Additionally, it will evaluate the QoL, caregiving burden, caregiving capacity, attitudes toward caregiving, and positive perceptions of dementia for caregivers.

3.1 A three-stage mixed-methods design

Our adaptation follows an 11-step framework by Escoffery et al. (2018) [22], systematically grouped into three stages. This structured approach is tailored to meet specific research objectives and ensures a systematic, well-organized process. Delineating each step’s goals and outcomes facilitates effective monitoring and timely adjustments based on emerging findings and situational changes. Figure 1 provides an overview of the stages and individual steps, illustrating our structured approach to meeting specific needs.

Insert Fig. 1 here.

In the baseline stage (Steps 1 to 5), we assess the community and review existing EBIs. This is followed by in-depth consultations with experts and key stakeholders, including patients, caregivers, and healthcare professionals. These steps are integral in collecting diverse perspectives and expert insights, which inform the foundational framework of our program and ensure its cultural relevance.

During the formulation stage (Steps 6 to 8), we adapt the NCHP to fit Chinese culture and deliver caregiver training. This preparation is crucial for the forthcoming practical deployment of the program among home-dwelling PWDs. Our approach incorporates feedback from previous stages to refine training modules and intervention strategies, ensuring cultural resonance and practical feasibility.

The execution and evaluation Stage (Steps 9 to 11) involves implementing a comprehensive intervention, including pilot testing of adapted materials to assess preliminary efficacy. Baseline data (T0) is collected at the start of the intervention to establish initial conditions for comparison. Subsequently, data is collected immediately post-intervention (T1) and at three months post-intervention (T2), alongside process evaluation [23].

3.2 Baseline stage

Step 1: Assess the community

The selection of Lianyungang, Jiangsu, as our primary research site is based on the advanced facilities and strong participant engagement at the Chaoyang Community Health Service Center. This location is ideal due to its convenient transportation network, which is crucial for attaining a representative demographic sample and supporting the logistical needs of caregiver training and workshops. This is especially relevant as the study focuses on ‘aging in place’ [24], a concept strongly endorsed by the local elderly community. The study has been approved by the Nanjing Hospital of Chinese Medicine Ethics Committee (KY2022004), ensuring adherence to ethical standards. The meticulous selection process for the study location underscores our commitment to methodological rigor, which is essential for the accurate evaluation and potential scalability of the intervention.

Steps 2–3: Understand and select the EBI

The research team conducted an extensive review of non-pharmacological interventions for moderate to advanced dementia, recognizing their considerable benefits in enhancing the QoL for PWD and their caregivers. Such methods are particularly critical in LMICs [1], where healthcare resources are limited.

Among the various EBIs evaluated, the NC program was selected for its efficacy and relevance due to (1) its proven impact on PWD’s QoL and dignity, as well as enhancing caregiver well-being; (2) its alignment with Chinese cultural values, including filial piety and the preference for aging in place; (3) its compatibility with caregiver-led implementation, which aligns with China’s home-based LTC focus; (4) its adaptability across various care settings and its focus on person-centered methods, including multisensory stimulation and a calm environment. These core principles inform our research methodology and guide our study’s development and evolution, as detailed in Joyce Simard’s seminal 2013 work [25].

Step 4: Consult with experts

In this step, we engaged with Joyce Simard, the originator of NC, and Rishi Jawaheer, the Honorary Chairman of Namaste Care International (NCI), through webinars and in-depth email discussions. These interactions enriched our understanding of the NC, providing insights into its foundational theories and practical applications. The experts shared their extensive experiences with global adaptations of the program, which is crucial for customizing our approach to meet the specific needs of the Chinese community we aim to serve. Additionally, our discussions covered the demographics of PWD and their caregivers, which is critical for optimizing the intervention’s impact and fostering its acceptance in the local context. The consultations also offered a global perspective on applying the NC program in community settings, which will be invaluable for our future adaptations.

Step 5: Consult with stakeholders

We held a kick-off meeting with caregivers, directors from the community health service center, and community nurses to establish a collaborative foundation for the study. The research team presented the project, outlined its objectives, and anticipated outcomes, and set a clear roadmap for proceeding.

Subsequent discussions with caregivers aimed to deepen their understanding of dementia care and pinpoint existing knowledge gaps. These conversations addressed the complexities of caring for home-dwelling PWD and gathered crucial feedback on the intervention’s potential to mitigate challenges. Stakeholders expressed concerns about the impact of dementia on families, underscoring the need for a culturally relevant program that integrates seamlessly into existing care plans.

3.3 Formulation stage

Step 6: Decide what needs to be adapted

Building on the insights from initial feedback and analysis of the NCHP in other regions, our team identified critical adjustments needed for the Chinese context. These adjustments maintained the program’s core objectives, principles, and theoretical foundations while adapting to specific implementation conditions, environmental needs, and training methods. By retaining the essential elements of NCHP yet tailoring its application, we ensured that the program remained true to its roots while being effectively contextualized to meet local needs.

An integral part of this adaptation stage involved organizing a meeting with community nurses, caregivers, and family members. This meeting aimed to crystallize the necessary adaptations for the NCHP, ensuring alignment with China’s cultural sensibilities and caregiving practices. Deliberations focused on adapting activities to be more practical and feasible within home settings, enhancing the caregiving experience, and ensuring smooth integration into the daily care strategy. This approach underscored our commitment to cultural unity and demonstrated our collaborative, iterative process in tailoring the program for the target population.

Step 7: Adapt the original intervention program

The research team focused on conceptual translations to maintain the integrity and essence of the program content for local nurses and caregivers. The program’s design was simplified and standardized to integrate smoothly into daily caregiving routines, supporting caregivers who manage multiple responsibilities. Daily activities were tailored to the capabilities of PWD, ensuring engagement and practicality. Group activities were organized twice weekly to promote regular participation (Refer to Table 1). These activities will be periodically reviewed and adjusted to maintain long-term engagement.

Table 1. The adapted NCHP schedule

Daily activities	Morning Sessions	Preparatory work	1. Food and drink preparation: seasonal availability, individual preference, swallowing condition. 2. Personal care items: NCHP bags (hand cream, face cream, etc.) 3. Room setup: soft lighting, soothing aromatherapy, relaxing music, etc.
		Life care and activities	1. Morning greetings. 2. Facial care: facial cleansing, applying face cream, and rubbing face, etc. 3. Hand care: hand cleaning, hand cream massage, etc. 4. Traditional Chinese Medicine health care: swallowing exercises, finger exercises, meridian tapping, head soothing, finger combing hair, tooth tapping, etc. 5. Outdoor activities: low-angle sunbathing (8-10 a.m.), walking.
		Nutritional supplement	1. Snacks: lotus root powder, sesame paste, etc. 2. Intermittent hydration: water, Chinese floral teas, soy milk, etc.
	Noon sessions	1. Abdominal rubbing (Fairy kneading manipulation) 2. Nap for 20-30 minutes
	Afternoon sessions	Activities	1. Creative activities: paper cutting, painting, colorful doodling, reminiscence therapy, doll therapy, etc. 2. Games: tossing game, card game, etc. 3. Traditional Chinese cultural activities: listen to opera, crosstalk, and storytelling, etc. 4. Outdoor activities: low-angle sunbathing (3-5p.m) and walking.
	Afternoon sessions	Nutritional supplement	1. Food: fruit platter/fruit puree, etc. 2. Intermittent hydration: water, milk, etc. (avoid drinks that affect sleep)
	Evening sessions	Life care	1. Foot care: warm water foot soak，foot massage, etc. 2. Sleep care：Chinese herbal aromatherapy for sleep aid (Acorus calamus, Albizia Flower, etc.), applying body lotion.
	Evening sessions	Finish work	1. Touching the back of the hand and patting the back. 2. Praising the PWD for their cooperation throughout the day. 3. Document the PWD’s activity preferences and complete the NCHP checklist.
Group activities	Twice weekly		1. Competitive activities: marble grabbing，ring toss game. 2. Cultural and social gatherings: Red Song parties，tea parties. 3. Creative activities: horticultural therapy, flower arrangement, DIY handicrafts, creating a family calendar. 4. Festival Activities: making rice dumplings and sachets, making mooncakes, paper cutting, and making dumplings.

Abbreviations: NCHP, Namaste Care Home program; PWD, persons with dementia.

Our adapted NCHP retained the original program’s core principles, addressing five elements illustrated in Fig. 2. These modifications included (a) Applicability to daily life: The NCHP prioritized familiarity and economic viability in daily caregiving choices. Products such as Pechoin SOD emulsion and Tong Ren Tang Vitamin E body lotion were selected for their reputation and affordability, similar to preferences for brands like Pond’s in the USA and Nivea in the UK. Activities were straightforward and incorporated Traditional Chinese Medicine (TCM) practices, such as head soothing and finger combing. Additionally, food selections were carefully made to meet PWD’s nutritional needs and swallowing capabilities, ensuring manageable for caregivers and enjoyable for participants. (b) Group activities: these were crafted to foster social interaction and sustain participant engagement. Activities ranged from creative arts like paper cutting to cultural and social gatherings like Red Song parties and tea parties, catering to diverse interests and abilities. (c) Blending with fun: including enjoyable and functional activities such as traditional Chinese games like tossing and card games, which served therapeutic purposes by enhancing cognitive and physical stimulation. (d) Family Involvement: the NCHP strongly encouraged family participation, incorporating activities that strengthen familial bonds. Creating family calendars and participating in group activities were crucial components that enhanced the well-being of PWD. (e) Traditional festival participation: The program integrated participation in ensuring that daily care activities would be manageable for caregivers and enjoyable for participants., customized according to the seasonal customs throughout the year. This ensured that PWD could engage in culturally relevant activities, enhancing family interactions and strengthening familial bonds.

Insert Fig. 2 here.

After adopting the NC program, we submitted our changes to Joyce Simard for review. She provided additional guidance to ensure that the program remains faithful to its foundational principles while addressing the specific needs of the Chinese community. This endorsement validated our approach and strengthened the credibility and applicability of the adapted program, highlighting the collaborative effort between Joyce and our team in adjusting the NC program to our cultural and social settings.

To further assess the NCHP’s acceptability and refine its components, we will conduct focus group discussions with community nurses, caregivers, and family members [26]. Leveraging the Bowen feasibility framework and acceptability theory [27, 28], we will develop the interview guides detailed in Supplementary Table S1. These guides comprehensively assess the program’s practicality and acceptability [29]. Additionally, semi-structured interviews with caregivers will collect feedback on the activity checklist and item list, enabling the creation of personalized NCHP Checklists and NCHP bags for PWD. Caregivers can review and provide suggestions on the NCHP caregiver manual.

Step 8: Select and train caregivers

We will use criterion sampling to select caregivers who meet specific inclusion criteria [30]. This focuses on adults aged 60 years or older with moderate to advanced dementia in the Chaoyang community and will be assessed by the Mini-Mental State Examination (MMSE) [31]. Eligible caregivers are then identified based on the following criteria: (a) aged 18 years or older; (b) provide in-home care to PWD, dedicating a minimum of four hours weekly; (c) have at least one year of caregiving experience.

While conventional pilot studies necessitate formal sample size calculations, our methodology, adhering to established guidelines [32], and opts for a pragmatic participant count sufficient to determine the study’s feasibility. Based on previous NC program studies, we anticipate engaging 15 to 20 caregivers [33, 34], with the flexibility to adjust based on evolving data. This strategy aims to comprehensively understand the program’s feasibility within the broader Chinese social context.

In forthcoming NCHP training sessions, the program will be delivered directly by the principal researcher, who is recognized as the NC Chinese regional champion and specializes in community geriatric care. Community nurses proficient in NC will also play an active role, addressing inquiries and overseeing practical applications to ensure an in-depth educational experience [35]. Training sessions are scheduled on weekends over two consecutive weeks, with two two-hour sessions each day. Online training modules will further improve accessibility and convenience. Personalized training sessions will be available to address specific issues that arise during the training process, ensuring all caregivers are equipped to implement the program effectively.

Before training commences, caregivers will receive a concise NCHP manual outlining the essential concepts and practices. This manual will serve as an initial guide and reference point throughout the training. The training program will cover a wide range of topics through direct instruction and instructional videos, ensuring accessibility for caregivers from diverse educational backgrounds. The curriculum will include the NC program’s history and fundamental practices, alongside case studies, emphasizing the practical application of the NCHP checklist and NCHP bag for effective care delivery. It will also include essential techniques for assessing pain, mood, and agitation, such as creating memory books and gardening with dementia-friendly resources. After completing the training, caregivers will be encouraged to apply these skills in their home settings under the supervision of trainers.

A process evaluation will be conducted one week after training to refine the training content and delivery methods and assess participant engagement based on caregiver feedback [23]. This feedback will help improve the training’s applicability and update the NCHP manual, ensuring it effectively addresses caregivers’ needs and allows for the appropriate content modification [35].

3.4 Execution and evaluation stage

Step 9: Test adapted materials

Four PWDs and their caregivers will be recruited for a two-week pilot study to test the culturally adapted NCHP in China [36, 37]. Before the study, participants will receive an informed consent that details their rights and the study’s procedures. During the pilot period, caregivers will conduct NCHP interventions directly in their homes. Caregivers will use a checklist to document daily activities, track task completion, facilitate tailored care, and enable ongoing adjustments to the NCHP bag contents based on the evolving needs of PWD.

After the pilot test, the principal researcher will lead a focus group with community nurses and caregivers to discuss their experiences and suggestions [26]. The discussion will evaluate participants’ changes, their knowledge of the caregiving experience with the NCHP, and the potential for subsequent program implementation. Detailed notes will be taken to capture critical insights, ensuring a thorough assessment of the intervention’s impact and feasibility in the local context.

Step 10: Implement the NCHP

The adapted NCHP will be implemented over three months in Lianyungang, China. The research team will continuously supervise and evaluate program progress to address areas for refinement and ensure alignment with participants’ needs.

Baseline data (T0) will be collected using structured questionnaires to gather demographic information (e.g., age, gender) before the start of the intervention. Assessments will measure the QoL and self-perceived burden for PWD. For caregivers, the QoL, caregiver burden, caregiving capacity, attitudes toward dementia, and positive feelings toward caregiving will be measured. The purposes, tools, and schedules for data collection for both groups are detailed in Tables 2 and 3.

Table 2

Data Collection for PW
Data collected and tool used	Primary purpose	Time point of data collection
Data collected and tool used	Primary purpose	Baseline (T0)	Immediately post-intervention (T1)	3-month follow-up (T2)
Socio-demographics	Age, gender, ethnicity, medical conditions, access to social support such as family, friends, or formal care resources, etc.	×
QOL-AD ^a	Assess QoL of PWD	×	×	×
SPBS ^b	Assess the self-perceived burden of PWD	×	×	×
Abbreviations: SPBS, Self-Perceived Burden Scale.
^a Increased score reflects improved QoL; the total score ranges from 13 to 52.
^b Decreased scores reflect less perceived burden; total score ranges from 10 to 50.

Table 3

Data Collection Time Points for Caregivers of PWD
Data collected and tool used	Primary purpose		Time point of data collection
Data collected and tool used	Primary purpose		Baseline (T0)	Immediately post-intervention (T1)		3-month follow-up (T2)
Socio-demographics		Age, gender, educational level, family structure (e.g., relationship to the patient, presence of children or other dependents), living situation (e.g., cohabiting with the patient, living alone, or in a care facility), caregiving experience (e.g., duration of caregiving, hours of care provided per day)	×
WHOQOL-BREF ^a		Assess the Quality of life of the caregivers	×	×	×
C-ZBI ^b		Assess Caregiver Burden	×	×	×
CTI-25 ^c		Assess the caregiving capacity	×	×	×
FAS-C ^d		Assess attitudes toward dementia	×	×	×
C-PAC ^e		Assess positive feelings towards caregiving	×	×	×
Abbreviations: WHOQOL-BREF, the mainland Chinese version of the World Health Organization Quality of Life Scale- Brief Form Questionnaire; C-ZBI, the Chinese version of the Zarit Burden Interview; CTI-25, Chinese Caregiver Task Inventory-25; FAS-C, the Chinese version of the Family Attitude Scale; C-PAC, the Chinese version of the Positive Aspects of Caregiving
^a Increased scores reflect improved QoL; total score ranges from 0 to 100.
^b Decreased scores reflect less caregiver burden; total score ranges from 0 to 88.
^c Decreased scores reflect less complexity of caregiving tasks; total score ranges from 0 to 50.
^d Decreased scores reflect less adverse relational effects; total score ranges from 0 to 150.
^e Increased scores reflect more positive caregiving emotions; the total score ranges from 0 to 55.

Insert Table 2 and Table 3 here.

The NCHP Coordinator, responsible for overseeing the intervention, will conduct regular check-ins with caregivers. The first two weeks will involve an intensified review process, collecting and analyzing feedback on the schedule and NCHP checklist’s applicability and any challenges faced during implementation for immediate adjustments. A separate process evaluation will be conducted on the 2nd,4th, and 8th Weeks [23].

Step 11: Evaluation of the NCHP

Our study will employ a comprehensive mixed-methods approach, blending quantitative and qualitative methodologies to fully understand our research objectives.

Process 1: Data collection

This study employs a one-group pretest-posttest design to evaluate the feasibility, acceptability, and preliminary efficacy of the NCHP in China. Feasibility will be evaluated by comparing the NCHP checklist against established benchmarks [29]. The criteria for feasibility include (a) the application frequency of NCHP weekly (goal: a minimum of three days within seven days, with at least 4 hours on one of the days); (b) the retention rate of participants over a three-month data collection period (goal: 75%); and (c) the incidence of reported adverse events (goal: 0%). The types of adverse events that may be reported include skin breakdown and falls [38].

Qualitative interviews will be conducted immediately post-intervention (T1) to explore the program’s acceptability and caregivers’ experience and to shed light on its prospective impacts [39]. These interviews will assess various dimensions of acceptability, including (a) the advantages and drawbacks of the NCHP, (b) the overall satisfaction with the NCHP’s implementation, (c) the barriers and facilitators to implementation, and (d) the suggestions for enhancing the NCHP. The interview guides are detailed in Supplementary Table S2.

Quantitative data will revisit metrics established in baseline (T0) and will be conducted immediately post-intervention (T1) and at the 3-month follow-up (T2) to evaluate the NCHP’s efficacy. The primary outcome, QoL, will be reassessed using the QOL-AD [40] for PWD and the WHOQOL-BREF [41] for caregivers. Secondary outcomes, including perceived burden (SPBS), [42] for PWD, positive perceptions (C-PAC) [43], caregiving capacity (CTI-25) [44], caregiver burden (C-ZBI) [45], and attitudes toward dementia (FAS-C) [46] for caregivers, will be measured again to gauge the intervention’s effectiveness comprehensively. Detailed metrics and scales used are consistent with those introduced in Step 5 and are further described in Tables 1 and 2, ensuring clarity and continuity in the study’s methodological approach.

Process 2: Data analysis

Quantitative analysis: The demographic characteristics of participants will be summarized using descriptive statistics (means, standard deviations, interquartile ranges). To rigorously evaluate the intervention’s effects over time, Linear Mixed Effects Models will be employed (LMMs) to analyze the quantitative data collected at three critical times on points. This method is particularly suited for analyzing data from repeated measures, as it accommodates fixed effects, such as time, and random effects (to accommodate inter-individual variability). Additionally, effect sizes will be calculated to quantify the magnitude of changes over time and between groups. Statistical significance will be determined at p < 0.05, and all analyses will be conducted using SPSS version 26.

Qualitative analysis: Consent will be secured for the audio recording of all qualitative feedback. Using conventional content analysis, we will employ Braun and Clarke’s experiential thematic analysis framework: (a) gaining familiarity with the data; (b) conducting coding; (c) locating themes; (d) reviewing themes; (e) developing a definition for themes and naming them; and (f) developing a report [47]. The research team will review transcripts within 24 hours to refine coding structures and ensure consistency. Transcripts will be organized and coded using NVivo 14 to deeply understand the data, with analysis occurring concurrently with interviews. A codebook will be created after examining the initial focus group responses. If discrepancies arise during the coding process, the primary coders will discuss them and, if needed, seek input from a third researcher to reach an agreement. The established codes will be organized into subcategories and merged into main categories. A member check will be performed to validate the content analysis’s reliability

Mixed-methods analysis: This approach uses data triangulation to validate findings and comprehensively understand the study topic [48]. After conducting independent analyses of qualitative and quantitative data, insights from both datasets will be integrated through comparison and synthesis, drawing meta-inferences to enrich the understanding of the NCHP’s multifaceted impact within the Chinese home environment [49].

Intervention fidelity

To ensure the quality and consistency of the intervention, an evidence-based approach will be used. All intervention content will be delivered through the standardized schedule. Caregiver completion of the intervention will be monitored and assessed using the NCHP checklist. Additionally, all training will follow the NCHP manual to evaluate the fidelity of the implementation.

The introduction of NCHP as a culturally adapted EBI aims to address the unique challenges of dementia care in China. These challenges include caregiver burden, a deficiency in knowledge, and support gaps. By equipping caregivers with essential skills and knowledge through the guidance of community nurses, NCHP seeks to improve the QoL for PWD and their caregivers, making care more effective and sustainable.

Our strategic segmentation of Escoffery’s 11-step framework into three stages structures the adaptation process systematically, ensuring a coherent and orderly implementation from initial assessment to execution and evaluation of the program [22]. This structured approach aims to seamlessly integrate the program into the traditional Chinese caregiving environment and optimize it for local needs. Aligning the intervention with local cultural and societal norms is expected to smooth the implementation process and enhance participant engagement.

The culturally adapted program is anticipated to improve QoL for PWD and caregivers, reduce caregiver burden, and enhance the caregiver-PWD bond. It has the potential to redefine dementia care within a culturally sensitive, home-based framework. These benefits highlight the program’s capacity to fill critical care gaps through innovative, non-pharmacological treatments that honor cultural specifics.

The NC program’s tailored adaptation process is expected to effectively address the unique cultural nuances and caregiving practices of the Chinese community. By integrating traditional practices and sensory stimulation activities, the program is designed to resonate with local values, enhancing intervention acceptance and effectiveness. The flexibility and responsiveness of this feedback-driven strategy are critical in shaping an intervention that is practical and impactful for caregivers and PWD.

As NCHP demonstrates promise in addressing critical care gaps with innovative, non-pharmacological strategies that respect and incorporate cultural specificity, future research will focus on evaluating the long-term effects of such adaptations. Further randomized controlled trials are required to broaden the program’s applicability across diverse cultural settings.

LMICs low- and- middle-income countries

PWD Persons with dementia

EBI Evidence-based intervention

LTC Long-time care

NC Namaste Care

NCHP Namaste Care Home Program

TCM Traditional Chinese medicine

QOL Quality of life

BPSD Behavioral and psychological symptoms of dementia

QOL-AD Quality of Life-Alzheimer Disease

WHOQOL The mainland Chinese version of the World Health Organization Quality of Life Scale- Brief Form Questionnaire

SPBS Self-Perceived Burden Scale

NCI Namaste Care International

CTI-25 Chinese Caregiver Task Inventory-25

FAS-C Chinese version of the Family Attitude Scale

C-ZBI The Chinese version of the Zarit Burden Interview

C-PAC Chinese version of the Positive Aspects of Caregiving

Availability of data and materials

Not applicable.

Acknowledgments

We thank Joyce Simard and NCI for their support of this research.

Funding

The author(s) declare that financial support was received for this article’s research, authorship, and publication. This paper was supported by the project of the National Natural Science Foundation of China (72174095), Philosophy and Social Science Research in Colleges and Universities in Jiangsu Province (2023SJYB0308), and the Jiangsu Planning Office of Philosophy and Social Science (23ZXZB041).

Author information

Authors and Affiliations

School of Nursing, Nanjing University of Chinese Medicine, Nanjing, Jiangsu, China

Meng Jin, Dijuan Meng, Chang Sun, Qinan Shen, Yamei Bai, Guihua Xu, Yulei Song

School of Nursing, The Hong Kong Polytechnic University, Hong Kong SAR, China

Shanshan Wang

Department of Psychiatry, Harvard Medical School, Boston, MA 02115, USA

Hongtu Chen

Contributions

Conceptualization: Meng Jin, Dijuan Meng; Design of the work: Meng Jin, Dijuan Meng, Chang Sun, Qinan Shen, Yamei Bai, Guihua Xu, Yulei Song; Substantively revise the work: Shanshan Wang, Hongtu Chen. All authors contributed to the article and approved the submitted version.

Corresponding author

Correspondence to Dijuan Meng.

Ethics approval and consent to participate

The study was approved by the Nanjing Hospital of Chinese Medicine Ethics Committee (KY2022004). Adverse events will be monitored during the pilot study to ensure the rigor of the intervention. In the upcoming full trial, all procedures will strictly adhere to applicable guidelines and regulations. Before data collection, potential participants will receive a briefing on the study’s objectives, methods, potential benefits, and risks. Participation is entirely voluntary, and participants may withdraw at any time without explanation. Informed consent will be obtained from all participants before collecting baseline data. The research team is well-versed in maintaining the integrity and confidentiality of data. The survey data will be de-identified, and all information will be kept confidential and accessible only to the research team.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.

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Cultural adaptation and evaluation of Namaste Care program for home-dwelling persons with dementia and their caregivers in China: a mixed-methods study protocol

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1. Background

2. The study

2.1 Aims

3. Methods

3.1 A three-stage mixed-methods design

3.2 Baseline stage

3.3 Formulation stage

3.4 Execution and evaluation stage

4. Discussion

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