Perceived and unmet needs for health and social services among families coping with dementia in China: A descriptive study

Abstract

Objectives

To describe the perceived and unmet needs for health and social services and their relative importance among families coping with dementia in urban China.

Methods

We used data from a cross-sectional survey conducted between 2018 and 2019 in two cities in eastern China. Trained staff conducted structured interviews of family caregivers of people living with dementia at home to obtain individual characteristics as well as types of service needs of families coping with dementia. Service needs and utilization in 24 types of services across five domains (daily living, medical/nursing, rehabilitation, mental health, and other) were examined. Descriptive statistics were used to describe characteristics of the dyads and the ranking of services based on the percentage of respondents with perceived/unmet needs.

Results

A total of 170 (87.6%) family caregivers completed the interviews. The mean age of the care recipient was 77.2 years (range: 60–102) and 65.3% were female. The mean age of family caregivers was 58.4 years (range: 28–90), and 57.1% were female. The top five services used by the care recipients were: primary care, medication management, housekeeping, activities of daily living assistance, and adult day service. The five services with the most unmet needs were: legal assistance (42.7%), hospice care (44.7%), respiratory secretion management (expectoration) (57.6%), life enrichment activities (65.4%), and companion care (67.0%). Except for transportation and dressing/grooming, working and nonworking caregivers reported similar relative importance of service needs.

Conclusions

The findings suggest that people living with dementia and their family require a wide range of services and supports to live in the community. Future research and policy efforts should target the unmet needs of families to improve dementia care in the community and promote aging-in-place.

Keywords

caregiver unmet service needs long term care health policy persons living with dementia

Introduction

More than 55 million people had dementia and the number of new cases is growing by almost 10 million each year (World Health Organization, 2021). China has one-fifth of the world’s older adult population and a quarter (more than eight million) of the world’s dementia population (Jia et al., 2018; Li et al., 2018). In 2020, the total cost of dementia care to families and the health care system was estimated to be $249 billion in China, and this number is expected to double by 2030 (Jia et al., 2018). Despite continued progress in our understanding of the disease, effective prevention and treatment for dementia are still lacking. To address the growing needs for services, the World Health Organization has developed a global plan for action which emphasizes seven action areas, with dementia care and support being two key areas (World Health Organization, 2017). As the needs of people living with dementia are complex and evolve over the course of the disease, a range of health and social care will be needed by the growing number of families coping with dementia in China.

For people living with dementia, the irreversible decline in brain functioning can lead to progressive memory loss and impairment in their ability to perform daily activities. Most people living with dementia also experience behavioral and psychiatric symptoms, which contribute to a lower quality of life and higher caregiver strain. Thus it is necessary to develop strong health care and social support systems and policies to help families caring for people living with dementia (Choi et al., 2021). Despite several recent studies documenting the prevalence rates of dementia in China and its impact on caregiver burden (Chen et al., 2016; Li et al., 2018; Zhao & Li, 2020), evidence regarding the day-to-day care needs of families coping with dementia remains very limited (Wang et al., 2018; Wang, Cheung, & Leung, 2019; Yang, Wu, et al., 2021). Therefore, how to strengthen the health care and social service systems to support aging in place and enhance the quality of life of families coping with dementia requires a better understanding of the needs of people living with dementia and their family caregivers (Wang et al., 2020; Yang, Ye, & Sun, 2021). In response to challenges posed by the rapid population aging, the Chinese government issued the “90-7-3” framework as a guiding principle for long-term care in which 90% of all older adults would age in place at home, 7% would receive residential care in the community; and the remaining 3% would be cared for in institutional settings (Wang & Wu, 2017; Wang, Cheung, & Leung, 2019). Currently, in line with strong traditions of Confucious core values of filial piety and collectivism, the overwhelming majority of people living with dementia (96%) in China are cared for by family caregivers (Wang & Wu, 2017). However, due to the challenges in providing care for them, many caregivers bear physical, financial, social, and psychological burdens (Wang et al., 2021).

In both developing and developed countries, family caregivers provide substantially more care for people living with dementia as compared to the time spent caring for individuals without dementia. For example, a nationally representative study of US caregivers found that dementia alone accounted for 41% of all caregiving hours provided by family caregivers and that caregiving is most burdensome for caregivers living with the care recipient (Kasper et al., 2015). Heavy reliance on informal caregivers may also contribute to lower labor force participation, with over 60% of the estimated cumulative impact of dementia is due to productive labor losses(Keogh-Brown et al., 2016; Wittenberg & Hu, 2016). Since China has the largest share of global manufacturing output, lower labor force participation due to caregiving could have detrimental long-term effects on the global supply chain. Consequently, providing adequate support for caregivers is likely to reduce the negative impact of a growing dementia population will have on care provision, caregiver well-being, and productivity (Chang et al., 2020; Clay et al., 2019; Amjad et al., 2018). Understanding whether and to what extent families coping with dementia have their needs met is important for clinicians, researchers, and policymakers because unmet needs negatively affect caregivers’ ability to provide support for aging-in-place among persons living with dementia and contribute to caregiver stress, burnout, and worsened mental health.

Given the large impending increase in people living with dementia and a diminishing pool of family caregivers, more research aimed at strengthening the national public health response to support family caregivers is urgently needed. The aim of this study is to describe the perceived and unmet needs for health and social services and their relative importance among families coping with dementia in two cities in eastern China.

Methods

Study design

This is a cross-sectional descriptive study involving families coping with dementia at home in Ningbo and Shanghai, two cities in eastern China. A two-stage stratified random sampling design was used to select and screen potentially eligible families in each city to participate in the study. An in-home survey was then conducted for each eligible and consented family. All interviewers participated in a five-day training program before the study. Two teams of interviewers visited each participant’s home and conducted face-to-face interviews between July 2018 and October 2019. Each interview lasted between 30‐60 minutes. A total of 188 participants completed the questionnaire. After excluding participants with normal MMSE and whose age variable was missing, data from 170 participants were used in the analysis.

Inclusion/exclusion criteria

Residents were eligible for study inclusion if they (1) were ≥60 years old, (2) lived at home, (3) had a family caregiver willing to provide written informed consent, and (4) had medically diagnosed dementia. Dementia is defined as meeting the Chinese Guidelines for Diagnosis and Treatment of Cognitive Impairment and Dementia (Jia et al., 2018). Those younger than 60 years old, undiagnosed, normal cognitive function, served in an institutional setting, or unwilling to consent were excluded from the study.

Survey/Measurement

The survey was designed to obtain information on both care recipients and caregivers. The survey included questions on basic social-demographic information of people living with dementia (age, gender, education, income, marital status, and occupation) and caregiver information (relationship with the care recipient, age, employment status, health, and functional status). Disease status included the type of dementia, clinical symptoms, medications, and rehabilitation. Dementia severity was assessed by the Mini-Mental State Examination (MMSE), a standard tool used to assess cognitive function and screen for dementia (Folstein et al., 1975). The MMSE includes assessment on time and location orientation, immediate recall, attention focus and math literacy, delayed memory, language, and visual space. To account for the cultural context of the Chinese older adult population, two sets (high vs. low education attainment) of cut-points were used to classify cognitive function. For those with ≤6 years (elementary school) of primary education: severe (0–9 points), moderate (10–15 points), mild (16–19 points), and normal (20–30 points). For those with >6 years of secondary education: severe (0–10 points), moderate (11–17 points), mild (18–23 points), and normal (24–30 points) (Chua et al., 2019).

The Barthel Index was used to assess the activities of daily living (ADL) of people living with dementia. It consists of 10 items, including bowels, bladder, grooming, toilet use, feeding, transfer, mobility, dressing, stairs, and bathing. The Barthel Index (0–100 points) was grouped into five levels: completely independent (100 points), mildly dependent (91–99 points), moderately dependent (61–90 points), severely dependent (21–60 points), and completely dependent (0–20 points) (Collin et al., 1988).

Regarding service needs and unmet needs, we used a list of services adapted from the service categories described in the Camberwell Assessment of Need for the Elderly (CANE) (Reynolds et al., 2000) and the Johns Hopkins Dementia Care Needs Assessment (JHDCNA) (Black et al., 2008). Four categories of services essential for community living were included: ADL, Medical Care, Mental Health Care, and Other. The degree to which needs were met was calculated as the percentage of the number of unmet needs out of the total number of service needs reported by each respondent.

Statistical analysis

Descriptive statistics were examined based on the individual characteristics of the persons with dementia and their caregivers, respectively. Results were reported as percentages for categorical variables and means and standard deviation for continuous variables. We also compared caregiver characteristics by employment status. The total perceived needs and unmet needs were calculated based on their frequency at the individual level and ranked among all services. Bar charts were used to describe the relative importance of the unmet needs (in descending order). We also compared the perceived needs for services by caregiver employment status. Fisher’s exact tests were used to examine whether working caregivers have significantly different needs as compared to non-working caregivers. All analyses were performed using SAS 9.4 (SAS Institute, Cary, NC).

Results

A total of 170 families coping with dementia participated in the survey. The demographic information of people living with dementia from the sample are reported in Table 1. Most of the participants were female (65.3%), with an average age of the care recipients was 77.2 years (range: 60–102), and resided in Ningbo (89.4%). A total of 62.3% of the care recipients were currently married. The majority of the sample had a primary school education or higher (76.3%). In terms of occupation before disease onset, farmers represented the majority of the sample (42.9%), followed by blue-collar workers (20.6%), and white-collar workers (14.7%). Based on the Barthel Index, 30% of the sample were severely dependent, and 22.9% were completely dependent. The sample had a mean MMSE value of 9.13, and half the sample fell under the severe MMSE level (54.7%) category.

Table 1.

Descriptive statistics of persons with dementia in the study sample.

Characteristics	N	Mean ± SD/%
Age in years (60–102)	170	77.21 ± 8.44
City of residence
Ningbo	152	89.4
Shanghai	18	10.6
Gender
Female	111	65.3
Male	59	34.7
Marital status
Partnered	104	61.2
Single/Widowed/Other	66	38.8
Education
No formal education	41	24.1
Primary school	74	43.5
Middle school	35	20.6
High school and more	20	11.8
Occupation prior to retirement
Farmer	73	42.9
Blue-collar worker	35	20.6
White-collar worker	25	14.7
Government employee	15	8.8
Other	22	12.9
# of sons (0–5)	166	1.28 ± 0.93
# of daughters (0–5)	167	1.39 ± 1.09
Monthly income (CNY) (0–15000.00)	167	2873 ± 2485
Income source
Pension	122	72.6
Other	48	27.4
MMSE score (0–26)	170	9.13 ± 6.06
MMSE level
Mild	25	14.5
Moderate	53	30.8
Severe	94	54.7
Barthel index score (0–100)	170	55.18 ± 32.83
Level of physical dependency
Independent	16	9.4
Mildly dependent	14	8.2
Moderately dependent	50	29.4
Severely dependent	51	30.0
Completely dependent	39	22.9

CNY=Chinese Yuan, 1 CNY = 0.16 USD.

Table 2 summarizes caregiver characteristics of family caregivers. The average age of caregivers was 58.4 years (range: 28-90). The majority of caregivers were relatives of the care recipient, with the primary caregiver being mostly daughters (34.7%), sons (30%), and spouses (27%). There were more female caregivers (57.1%) than male caregivers (42.9%). The majority of caregivers had lower levels of education (high school or below), and 61% of caregivers were not working at the time of the study. The majority (69.4%) of the caregivers reported high levels of caregiving burden.

Table 2.

Characteristics of family caregivers of persons with dementia.

Characteristics	N	Mean ± SD/%
Age in years (28–90)	170	58.38 ± 12.38
Primary caregiver relationship
Spouse	46	27.1
Daughter	59	34.7
Son	51	30.0
Daughter-in-law/Son-in-law	6	3.6
Other	8	4.7
Gender
Female	97	57.1
Male	73	42.9
Occupation status
Employed	67	39.4
Unemployed	103	60.6
Education
No formal education	11	6.5
Primary school	43	25.3
Middle school	46	27.1
High school or technical school	37	21.8
Junior college	21	12.4
University or postgraduate degree	12	7.1
Health
Poor/very poor	18	10.6
Fair	100	58.8
Good/very good	52	30.6
Caregiving burden
Not at all	18	10.6
A little bit	34	20.0
Very much	118	69.4
Reduced hours worked due to caregiving, if employed
No	46	68.7
Yes	21	31.3
Has a secondary caregiver	151	88.8
Interested in receiving dementia education	132	77.6

Table 3 presents the number and percent of caregivers reported service needs and service use by categories. Primary care (87.1%) and medication management (85.9%) were the top two most use services, respectively. Figure 1 shows the percentage of families with service needs and service use by service category. The most needed and used services under each service category were as follows: home care (77.7%) under “ADL Care,” primary care (87.1%) under “Medical Care,” mental health counseling (65.3%) under “Mental Health Care,” and adult day service (68.8%) under “Other.” To highlight the overall unmet needs, Figure 2 shows the percent of unmet needs reported by families (in ascending order). The five services with the most unmet needs were: legal assistance (42.7%), hospice care (44.7%), respiratory secretion management (expectoration) (57.6%), life enrichment activities (65.4%), and companion care (67.0%).

Table 3.

Family caregiver reported perceived and unmet service needs.

Service categories	Number (%) of respondents reporting service need	Rank	Number (%) of respondents reporting service use	Rank
Activities of daily living (ADL)
1. Home care	132 (77.7)	3	113 (66.5)	3
2. Transportation	114 (67.1)	7	88 (51.8)	7
3. Eating	99 (58.2)	18	82 (48.2)	9
4. Dressing/Grooming	101 (59.4)	17	82 (48.2)	9
5. Using the toilet	99 (58.2)	18	80 (47.1)	12
6. ADL training	128 (75.3)	4	104 (61.2)	4
Primary health care
7. Primary care	148 (87.1)	1	126 (74.1)	1
8. Medication management	146 (85.9)	2	121 (71.2)	2
9. Respiratory secretion management	106 (62.4)	13	45 (26.5)	21
10. Oral care	102 (60.0)	16	75 (44.1)	15
11. Pressure ulcer prevention	99 (58.2)	18	78 (45.9)	13
12. Pain management	90 (52.9)	22	61 (35.9)	18
13. Emergency medical assistance	106 (62.4)	13	70 (41.2)	16
14. Specialty nursing care	117 (68.8)	5	82 (48.2)	9
Mental health care
15. Companion	109 (64.1)	11	36 (21.2)	24
16. Mental health counseling	111 (65.3)	10	87 (51.2)	8
17. Life enrichment activities	107 (62.9)	12	37 (21.8)	23
18. Support groups	75 (44.1)	23	50 (29.4)	20
Other
19. Home safety/modifications	112 (65.9)	8	89 (52.4)	6
20. Adult day service	117 (68.8)	5	94 (55.3)	5
21. Legal assistance	68 (40.0)	24	39 (22.9)	22
22. Caregiver training	112 (65.9)	8	76 (44.7)	14
23. Respite care	104 (61.2)	15	69 (40.6)	17
24. Hospice care	94 (55.3)	21	52 (30.6)	19

Figure 1.

The percentage of caregiver reported service needs and service use.

Figure 2.

The percentage of caregiver reported unmet needs for each service.

Table 4 describes caregiver reported needs for services by caregiver employment status. With the exception of transportation (58.2% among working caregivers and 72.8% among non-working caregivers) and dressing/grooming (46.3% vs. 68.0%), the majority of perceived service needs were similar between these two types of caregivers. The top three services desired by working caregivers were ADL training (73.1%), primary care (82.1%), and medication management (83.6%). The top three service needs based on non-working caregiver feedback were home care (81.6%), medication management (87.4%), and primary care (90.3%).

Table 4.

Family Needs for Services, by employment status.

Service categories	Working caregivers (%)	Rank	Non-working caregivers (%)	Rank	p Value
Activities of daily living (ADL)
1. Home care	71.6	4	81.6	3	0.130
2. Transportation	58.2	16	72.8	5	0.048
3. Eating	50.8	21	63.1	15	0.110
4. Dressing/Grooming	46.3	22	68.0	9	0.005
5. Using the toilet	52.2	20	62.1	16	0.201
6. ADL training	73.1	3	76.7	4	0.599
Medical care
7. Primary care	82.1	2	90.3	1	0.120
8. Medication management	83.6	1	87.4	2	0.487
9. Respiratory secretion management	56.7	17	66.0	12	0.221
10. Oral care	62.7	7	58.3	19	0.564
11. Pressure ulcer prevention	62.7	7	55.3	21	0.343
12. Pain management	56.7	17	50.5	22	0.426
13. Emergency medical assistance	62.7	7	62.1	16	0.942
14. Specialty nursing care	68.7	5	68.9	7	0.970
Mental health care
15. Companion	59.7	14	67.0	10	0.333
16. Mental health counseling	64.2	7	66.0	12	0.805
17. Life enrichment activities	61.2	12	64.1	14	0.704
18. Support groups	40.3	23	46.6	23	0.419
Other
19. Home safety/modifications	61.2	12	68.9	7	0.298
20. Adult day service	67.2	6	69.9	6	0.706
21. Legal assistance	37.3	24	41.8	24	0.564
22. Caregiver training	64.2	7	67.0	10	0.706
23. Respite care	59.7	14	62.1	16	0.750
24. Hospice care	53.7	19	56.3	20	0.741

Discussion

In this cross-sectional survey of family caregivers of people living with dementia in two cities in Eastern China, we found wide-ranging perceived and unmet needs reported by family caregivers. The majority of families coping with dementia reported needing and using both health and supportive services in the community. The research findings suggest that psychosocial needs (e.g., companion care and life enrichment activities, legal and emergency medical assistance, and respite care) are among some of the most common unmet service needs for supporting aging-in-place for people living with dementia in China.

The findings on unmet needs largely mirrored those reported by studies conducted in developed countries. For example, daytime activities, companionship, and psychological distress have been reported by persons with dementia and their caregivers as the most common unmet needs (Hancock et al., 2006; Miranda-Castillo et al., 2013; Tapia Muñoz et al., 2019). However, strengthening the support for home-based care for families coping with dementia may be a universal approach across cultures (Samus et al., 2018). The third-most reported unmet need of respiratory secretion management is of significance as persons with dementia at later stages of the disease are more prone to developing respiratory illnesses such as pneumonia (Mitchell et al., 2009). Assistance with respiratory secretions is vital to improving quality and life and life expectancy. For example, aspiration pneumonia is common among people living with dementia due to difficulty swallowing in later stages of the disease (Marik, 2010). Hospice care refers to a specialized type of care offered to persons at their end of life. It has been shown that patients who received hospice care reported fewer unmet needs than those who did not (Teno et al., 2011). Because the great majority of the sample consisted of persons at moderate and severe stages of dementia, the finding of high unmet needs for hospice care should be noted by funders and medical and social service providers to promote timely provision of palliative care in this population. As the 5^th ranked unmet need, legal assistance services (establishing power of attorney, health care proxy, and documenting living will) are considered very important for families coping with dementia. This finding is consistent with those obtained from the MIND study in Baltimore, Maryland, in which 48% of dementia caregivers reported needing legal assistance (Black et al., 2013). Somewhat unexpectedly, working and non-work family caregivers shared the majority of service needs, with the only exception being higher needs for ADL training reported by working caregivers and higher needs for home care reported by non-working caregivers.

Disease severity often has a direct impact on the level of care that is needed by and provided to people living with dementia. In this study, caregivers tended to be children or spouses of the care recipient, and the majority of caregivers had very limited education. Because caregiving needs and burden are largely determined by dementia severity (Liu et al., 2012), this sample of people living with later stages of dementia may explain the high levels of reported caregiver burden (Montgomery et al., 2018). Caring for persons with dementia has been shown to be incredibly taxing on the caregivers physically, mentally, socially, and economically (Chen et al., 2016; Cole et al., 2014). Despite their caregiving responsibilities, 39.4% of caregivers in this study remain employed, which is higher than the 26.2% employment rate reported by Chen et al. (2016) in a study including 130 dementia caregivers in six Chinese provinces. It is also worth noting that the overwhelming majority (88.8%) reported having a secondary caregiver. These findings suggest that home and community-based dementia care programs may need to accommodate working caregivers and multiple caregivers.

The findings of this study provide important information for the development of public financing and long-term services and supports to assist families coping with dementia in China. Although it is important to improve the access to and the quality of care in institutional settings, home and community-based health and social care should become a priority for policy development and capacity building. This is especially true in the context of rising cases of dementia and the impact of the “One Child” policy on the supply and demand for caregivers. One study reported that 5.8 million people served as caregivers to people living with dementia and provided a total of more than 6 billion hours of care (Kasper et al., 2015). Given that the average duration of dementia caregiving ranges from 8 to 12 years (Lee & Chodosh, 2009). Single-child households may face an even more significant burden on families coping with dementia. A recent study suggests that home care may bring unintended consequences to families coping with dementia, such as social isolation (Zhang, Clarke, & Rhynas, 2020), thus highlighting the need for more research into the best model or combination of models to provide personalized yet socially meaningful caring environments to optimize evidence-based caregiver support programs in the community. Support programs and interventions for informal caregivers should be a priority in long-term care policy planning and research funding (Xu et al., 2018; Qiu et al., 2019).

The study has certain limitations. First, the study was conducted in two economically more robust cities, and the sample size is relatively small. Therefore, results may not be generalizable to other cities or rural areas in China. Second, as people living with dementia have limited cognitive capacity, the analysis is based on caregiver-reported information of perceived and unmet needs. It is possible that caregivers may over or underestimate the family’s needs for services. Future studies should expand the study area and enroll a study population from wider geographic areas with better rural representations. Additional research is also needed to investigate contextual factors associated with caregiver burden and better understand how caregivers can be supported in the community.

Despite these limitations, the present study is among the first studies documenting the extensive unmet needs of the vulnerable population of families coping with dementia in the community in China. Similar to the findings from other countries, family caregivers play a crucial role in caring for people living with dementia, and they have substantial unmet needs (especially in the psychosocial domains). Therefore, more research is needed to understand the care needs of families coping with dementia in both urban and rural settings. These findings help inform the Chinese government on areas of need that should be prioritized in building and strengthening an emerging home and community-based medical and social services system for people with long-term care needs.

Footnotes

Acknowledgements

The authors would like to thank all families for their participation, as well as the research staff who conducted the interviews. We also wish to thank Dr. Hansheng Ding from the Center for Health Development Research of Shanghai, China, for his valuable technical assistance with survey research design and implementation.

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 authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the National Natural Science Foundation of China (NSFC Project #71774092).

Ethical Approval

The study was conducted in accordance with the Declaration of Helsinki, and the study protocol was approved by the Ethics Committee of Ningbo College of Health Sciences, China (approval number NBWY-011).

ORCID iDs

Tongda Sun

Mingze Zhu

Hongdao Meng

Tongda Sun is a professor and Director of the Institute of Health Service Research, Ningbo College of Health Sciences, China. His research focuses on aging, dementia, long-term care, and health policy. He has led more than 20 research projects, published 20 papers, and won 5 science and technology achievement awards in the past five years.

Rangcheng Jia is a professor and President of the Ningbo College of Health Sciences, China. His research focuses on aging, dementia, health economics, and health policy. He has led 16 research programs, published 59 papers and two monographs, and has won 3 teaching and science and technology achievement awards in the past five years.

Jodie-Ann Clarke is a recent graduate of the MPH program in the College of Public Health at the University of South Florida. She is interested in applying her training in veterinarian medicine and epidemiology to the One Health movement, which recognizes that the health of people is closely connected to the health of animals and the shared environment.

Mingze Zhu is a recent graduate of the MPH program in the College of Public Health at the University of South Florida with a concentration in Biostatistics. His research interests include traditional movement interventions (such as Tai Chi) and occupational health.

Debra Dobbs is an associate professor in the School of Aging Studies, College of Behavioral & Community Sciences at the University of South Florida (USF) and the Academic Director of the Center for Hospice, Palliative Care, and End-of-Life Studies at USF. Her research focus is on palliative and hospice care in assisted living communities, with an emphasis on improving the quality of palliative care among people living with dementia through staff training.

Yuntong Di is a graduate student in the MPH program at the University of South Florida. She is interested in applying epidemiological and statistical methods in examining aging and public health issues.

Xiaoxin Dong is an associate professor in the Institute of Health Service Research, Ningbo College of Health Sciences, China. Her research focuses on dementia, health services research, and health policy. She has led six municipal-level research projects and participated in three national-level projects, and has published 33 academic papers.

Hongdao Meng is an associate professor in the School of Aging Studies, College of Behavioral & Community Sciences at the University of South Florida. His research focuses on health promotion and disease management, integrative health interventions, and dementia.

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