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Shen, Huixia, Edwards, Helen, Courtney, Mary, McDowell, Jan, & Wei,Juan(2013)Barriers and facilitators to diabetes self-management: Perspectives ofolder community dwellers and health professionals in China.International Journal of Nursing Practice, 19(6), pp. 627-635.

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https://doi.org/10.1111/ijn.12114

Title: Barriers and facilitators to diabetes self-management: perspectives of older

community dwellers and health professionals in China

Running title: Diabetes self-management in Chinese

Authors:

Huixia Shen, RN, PhD, Lecturer, Department of Nursing, School of Medicine, Tongji

University, Shanghai, China

Helen Edwards, RN, PhD, Professor, Head of School, School of Nursing and Midwifery,

Institute of Health and Biomedical Innovation, Queensland University of Technology，

Queensland，Australia

Mary Courtney, PhD, Adjunct Professor, School of Nursing and Midwifery, Institute of

Health and Biomedical Innovation, Queensland University of Technology， Queensland,

Australia

Jan McDowell, PhD, Visiting Fellow, School of Nursing and Midwifery, Institute of Health

and Biomedical Innovation, Queensland University of Technology，Queensland, Australia

Juan Wei, Lecturer, Department of Nursing, School of Medicine, Tongji University,

Shanghai, China

Correspondence: Huixia Shen, RN, PhD, Lecturer, Department of Nursing, School of

Medicine, Tongji University,

1 2 3 8 G o n g h e x i n Road, 200070 Shanghai, China

E-mail: shhx@tongji.edu.cn

Telephone: +86 21 66052521.

FAX: +86 21 66052506.

For Peer Review

Barriers and facilitators to diabetes self-management: perspectives of older community dwellers and health

professionals in China

Journal: International Journal of Nursing Practice

Manuscript ID: IJNP-2012-00207.R1

Manuscript Type: Research Paper

Key Words: barriers, Chinese, diabetes, facilitators, self-management

International Journal of Nursing

For Peer Review

1

Barriers and facilitators to diabetes self-management: perspectives

of older community dwellers and health professionals in China

ABSTRACT

Little is known about self-management among people with Type 2 diabetes living in mainland

China. Understanding the experiences of this target population is needed to provide

socioculturally relevant education to effectively promote self-management. The aim of this study

was to explore perceived barriers and facilitators to diabetes self-management from both older

community dwellers and health professionals in China. Four focus groups, two for older people

with diabetes and two for health professionals, were conducted. All participants were purposively

sampled from two communities in Shanghai, China. Six barriers were identified: overdependence

on but dislike of western medicine, family role expectations, cuisine culture, lack of trustworthy

information sources, deficits in communication between clients and health professionals, and

restriction of reimbursement regulations. Facilitators included family and peer support, good

relationships with health professionals, simple and practical instruction and a favourable

community environment. The findings provide valuable information for diabetes self-management

intervention development in China, and have implications for programmes tailored to populations

in similar sociocultural circumstance.

KEYWORDS

Barriers, Chinese, diabetes, facilitators, self-management

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INTRODUCTION

Diabetes is an important public health problem. The adult population with diabetes is expected to

reach 439 million worldwide by 2030.1 While it is becoming epidemic, developing countries

rather than Western industrialised countries bear a major part of the increase. 1 China is one of the

most impacted countries. The prevalence of diabetes increased markedly in China from around

0.9% in 1980 to 3.21% in the late 1990s and to 9.7% in 2010. 2-4 Health expenditures for diabetes

are estimated to fall between 7.45 million and 14 million US dollars by 2030 in China. 5

Self-management, defined as the ability to manage the symptoms, treatment and lifestyle

changes inherent in living with a chronic condition, 6 is essential in diabetes care. There is

conclusive evidence that diabetes self-management leads to optimal glycemic level, improvement

of sociopsychological functions and better quality of life. 7,8

Though education programmes to

facilitate diabetes self-management proliferate worldwide, the real situation in China is far from

satisfying. Diabetes education has not been incorporated into Chinese healthcare system. Among

limited studies exploring diabetes education in China, behavior change models were infrequently

referred to and contents were normally determined without any needs assessment. 9

People may emphasise, modify, or give up self-management because of differing experiences

and perceptions. Understanding factors related to self-management is essential for planning and

implementing effective interventions. 10-12

However, to date, only a handful of studies reported

experiences and perceptions of diabetes self-management among Chinese. Furthermore, most of

these studies focused on Chinese immigrants to Western countries, 13-15

or Chinese living in

regions other than mainland China, such as Hongkong 16,17，

and Taiwan. 18Though influenced by

the same central Chinese culture, people live a unique sociocultural context in mainland China

and may have inconsistent views with Chinese living in other regions.

To our knowledge, this is the first study to examine the experience of Chinese with diabetes in

mainland China. The purpose was to explore perceived barriers and facilitators to

self-management from both older community dwellers with Type 2 diabetes and community health

professionals. Based on the findings, recommendations for developing culturally relevant diabetes

self-management programmes in China can be elicited.

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METHODS

Design

A descriptive design incorporating focus groups was used. The group setting allowed participants

to share a common experience, express opinions with clarification, and stimulate one another. It

also offered the researcher an opportunity to observe the interaction between group members,

and to better understand their thinking.19,20

Participants

All participants were purposively sampled from 2 communities in Shanghai, China. People with

Type 2 diabetes aged 60 years and above, without significant cognitive problems or advanced

complications, were recruited through posters at Community Health Centres (CHC),

community-gathering sites and personal communication. Community health professionals working

at the CHCs during the study period were recruited through staff meetings. To be eligible, the

health professionals had to have at least one year’s community work experience.

Data collection `

Four focus groups, 2 for older people with diabetes and 2 for health professionals, were conducted.

All the focus groups were moderated by the primary investigator to reinforce data equivalence

between groups. Discussion guides included open-ended questions and various probes related to

general experiences of diabetes self-management and encountered barriers and facilitators. Each

of the discussions took approximately 90 minutes.

After a brief introduction of the study and a “warm-up” stage, the primary investigator proposed

questions in a conversational format. An assistant facilitator monitored the recorder and recorded

field notes including facial expressions, comments, and other interpersonal interactions. At the

completion of the discussion, main points were outlined to the participants for clarification and

verification.

Ethical considerations

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Approval was obtained from the University Human and Research Ethics Committee, and from the

two CHCs where the study was hosted. Written consent was obtained from each participant. They

were informed of voluntary participation and freedom to withdraw. All data were kept confidential

and the results were reported with anonymity.

Data analysis

All discussions were tape-recorded. Immediately following each focus group, the native-speaking

primary investigator transcribed the tapes and added relevant notes. The primary investigator

hand coded the data and conducted a thematic content analysis following a step-by-step approach

proposed by Burnard. 21 The original transcripts and a draft coding system were sent to an

independent researcher for verification and refinement. Through ongoing discussion and a

clarification process between the primary investigator and the independent reviewer, consensus

about main findings was reached.

RESULTS

Seventeen older people with diabetes and sixteen community health professionals participated in

the focus groups (See Table 1 for demographic details). Participants identified major barriers and

facilitators to diabetes self-management. Some findings overlapped and were interrelated. People

with diabetes and health professionals reached consensus on the major issues, but different

opinions and emphases were identified.

Barriers

Overdependence on but dislike of Western medicine

Participants relied on Western medicine because it acted fast and effectively in glycemic control.

One woman said “I have been always taking (Western) medicine, and my blood gluose is neither

good nor bad, thus I do not pay much attention to it ”. However, older people took it reluctantly.

One woman said “taking (Western) medicine is what I have to do, as it will harm my body “. Some

admitted that they used to take less Western medicine, or drop it when they feel better. Compared

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to Western medicine, people preferred traditional Chinese medicine (TCM) and related health

products, such as herbal tea and balsam pear. Health professionals complained that some clients

chose TCM remedies by themselves and were worried that inappropriate use of these products

may interact negatively with Western medication.

Family role expectations

Health professionals pointed out that since older people with diabetes often did not look “sick”,

they still had to fulfill home responsibilities. The most common two were looking after

grandchildren and cooking for the whole family. One woman explained why she did not persist with

exercise “I am not free. I have to manage everything at home. The kid is too young，I must keep

watching. Sometimes I even hardly have time for grocery shopping”. Older people tended to

accommodate other’s tastes when preparing meal for whole family. One woman mentioned “It’s

impossible to follow the instruction. They (daughter, son-in-law, and granddaughter) are struggling

with either work or study. They need delicious and nutritious food. How can I cater for them with

stuff like that?”

Cuisine culture

Traditional Chinese Cuisine has a great flavour and a bright color by using much oil, sweet and

soybean sauce, which are not suitable for people with diabetes. However, older people did not

change their eating habits. One man said “If I give up everything, there is no quality in my life, and

it makes no sense for me (to live)” or “I would rather eat what I want, and live another several nice

years and it would be over”. In addition, older people tended to break diet at gatherings to comfort

others. “I break it, when there is guest at home or when I visit someone else.…. If I abide by the

rules strictly, others will find it not interesting…..they have to change topic….. I do not want to be

the focus…… ruin the happiness”.

Lack of trustworthy information sources

Older people with diabetes got information from various channels either actively or passively. They

usually felt confused about what they heard. One man said “we do not know as much as

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doctors…… after all…... we have to find the way, but we are uncertain whether it is suitable or not”.

Professionals also mentioned “patients were bombed by all kinds of advertisements. The sales try

every effort”. Older people complained that there was little opportunity for them to check the

information. However, professionals were not aware of clients’ desire to discuss “trick information”

with them. Instead, they blamed the older people’s unwisdom and credulity .

Deficits in communication between clients and health professionals

Participants complained that they could hardly talk with health professionals in a relaxing

atmosphere. “she sit at her desk, asking questions quickly, I tried to answer it carefully, but she

seemed unsatisfied with my delay, telling me to be concise……I wait for her to ask whether I have

something else to report……but she was quite, busy with medical record and prescription, then

she hinted that I can leave. From start to finish, she even did not look up at me”. However, health

professionals presented a different perspective. They sensed clients “have negative mood

targeting health professionals and hospitals”, and they attributed this to limited time allocation,

high medical costs and inefficient medical insurance system. One GP acknowledged “it’s

impossible for consolation due to not only limited time, but also emotional sense•••••• it is better

just to process what I should do (routine procedures)……that’s all”.

Restriction of reimbursement regulations

Self-monitoring of blood glucose (SMBG) is helpful to gauge glycaemic control and is an essential

component of diabetes self-management. According to the reimbursement regulation of Chinese

medical insurance system, both glucose meters and strips are not covered. Older people with

medical insurance can visit hospital for free glucose tests, but if they want to test themselves at

home, they have to purchase the meters and strips. One woman said “how can I do what you told

me? Walking twenty more minutes to Health Center several times a day? It’s ridiculous. ….. I can

afford the meter, but the cost of strips is bottomless pit”. Health professionals confirmed that

clients might give up SMBG due to financial considerations.

Facilitators

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Family support and peer support

Support from families, especially from spouses, was frequently mentioned. Identified family

support included financial support for medicine costs, help with housework, constant reminder and

sincere consolation. Family support was mentioned together with and compared to support from

peer patients repeatedly. A few stressed that peer support was irreplaceable since sometimes

even intimate family members did not fully comprehend their suffering. In addition, the positive

influence of peer patients was valued. “He is older than me, frailer than me, but he deals with it

well. I always ask myself to think about this when I nearly give up”.

Good relationship with health professionals

Friendship with health professionals made older people more willing to try self-management. One

man said “Li (a community nurse) is a good lady. ……. She helped me a lot. To be frank, without

her gabbing, I can hardly compete with my good appetite and laziness.” A few participants stated

that their doctors gave them sufficient time and let them talk about their concerns freely. This kind

of equal communication was beneficial. One man said “she would like to listen to my chattering.

She respected me and even said she learned a lot from me….. It's kind of hard for me to discipline

myself, but I will not disappoint her……"

Simple and practical instruction

Health professionals knew what helped clients most were specific rather than generic instructions,

which were customised to the individual’s unique living circumstances, “just like fool’ book”. This

opinion was echoed by older people “I don’t want to think too much……it’s too hard….. break it

down in plain, then I will follow it”. One woman emphasised “a lot of people told me to pay attention

to my food before, but how? I like traditional recipes…... she showed me how to modify the

cooking, it’s still delicious. I can copy, it seemed not too difficult”.

Favorable community environment

A harmony neighbourhood and trustable help from the Community Committee (CC) were valued.

Because of the high density of residency in China, participants and CC staff were involved with

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each other on an ongoing, often daily basis. One participant said “I met her here or

there……helping me with trivial things, asking about my condition……I can feel her care and I will

pay more attention to myself.” Both older people and professionals mentioned posters/billboards in

residences could improve public awareness and promote people to maintain self-management.

Community resources for physical activity, especially free in-door activity facilities were

commended.

DISCUSSION

Paying attention to profound cultural influences

The pervading nature of the Chinese cultural influences was obvious from findings, such as

overdependence on but dislike of Western medicine, family role expectations and cuisine culture.

The superstitions associated with TCM and resistance of Western medicine has been

reported in Chinese, especially in older people and people with chronic disease.18,22

TCM is

typically made from herbs and other natural sources, and is viewed as safer and more in harmony

with the human body. Therefore, even participants have to rely on Western medicine to control

disease, they view it as a temporary solution and try to turn to TCM whenever possible.

Older Chinese people tend to take care of adult children and/or grandchildren living in the

home or who spend extended periods of time there. Due to the “one child” policy, the younger

generation is much treasured by their elders in China.23,24

Sacrificing for children, including helping

with housework, managing meals and providing childcare, was viewed as an unshirkable

responsibility by older people, which intensifies their burden and can discourage self-management

effort.

Chinese people attach great importance to "eating" and have a passion for enjoying cuisine.

As cuisine characterises an important aspect of Chinese culture, freedom to enjoy foods plays a

critical role in quality of life. In addition, eating involves not only enjoying cuisine, but also

something like a gathering ritual for families and close friends. People would be willing to sacrifice

their own needs for happiness from such events.

When targeting the Chinese population, education programmes should pay attention to

salient cultural factors. Teaching coping strategies would help people to balance social

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expectations and self-management requirements without unduly sacrificing own health. Clarifying

misunderstanding of Western medicine, as well as the superstitions of TCM would help patients to

reconsider their attitude and adopt appropriate medication practices. Providing healthy recipes

and demonstrations of adapted cooking styles may increase people’s willingness to modify eating

habits.

Although the uniqueness of Chinese culture is emphasised, the existence of cultural

similarities need to be acknowledged. Some findings are similar with results from different

cultural/ethnic groups. For example, preference to traditional medicine can be seen in African

Americans. 25,26

Competing family demands have been shown to decrease self-management effort

among Latino and Arab women. 27-29

Previous studies have accumulated experience in tailoring

self-management programmes among these ethnicities, 30-32

therefore, useful strategies may be

derived from them and be applied in Chinese people.

Building network both within and out of families

Participants received various support from families, which is consistent with previous studies.33-35

However, family members were viewed as not fully comprehending patients’ feelings. Furthermore,

it may be harder for older people to receive help within families in near future. The long-standing

“one child” policy has intensified family downsizing and population ageing. Old kinship patterns

have become fragmented and the 4-2-1 (four grandparents, two parents and one child) family

structure is the new dominant form.36，37

Caring for four ageing parents and a single child can be

challenging for adults struggling with their own work commitments. In our study, though many

participants lived together with extended families, support from adult children was rarely

mentioned, which implies a reduction of filial responsibility. Even though valuing family

relationships is an important Chinese tradition, it may be compromised under certain circumstance.

A similar situation was reported in Chinese immigrants, 22 who lived in a new environment without

a large extended family to share the duty with.

Peer support was valued since it focuses on diabetes-related experiences, the accompanying

difficulties and specific management strategies. Peer support among people with the same chronic

health problems has been reported to improve behaviours and health outcomes. 38-41

Organising

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peer group activities is a promising way to facilitate peer support, through which older people

could find a source of social interaction, positive role models, sincere encouragement and

comparison with those who are in similar situations. 42-44

In China, the community is a residential area with a CC, which is an autonomous organisation

of dwellers. CCs, together with grass-roots government agencies, provide services such as health

dissemination and social assistance, and deals with most aspects of daily life. The results showed

Chinese older people favoured convenient community resources and reliable help from their CC.

Their opinions coincided with previous examples that collaboration with community organisations

can facilitate the process of education programmes and maximise their influence. 7,45

In summary, development of supportive networks, comprising not only family members but

also peers and communities, is feasible and necessary for older people with diabetes in China.

Strategies to best utilise families’ influences, such as involving family members in health education,

need to be emphasised. Organising structured peer group activities and promoting positive

interaction among neighbours and acquaintances through CCs can facilitate network building.

Establishing collaborative professional-client relationships

It is well documented that health professionals influence self-management.33,46,47

Good

relationships with health professionals was identified as a facilitator by the participants. Other

themes, such as simple and practical instructions, also implied the importance of cooperative

professional-client relationship.

The older people preferred tailored health instruction, which was simple, practical and

relevant to their life situation. To be competent to give such instructions, professionals must be

sensitive to clients’ experience, ideas and knowledge. Increasingly research recommends a

partnership between health professionals and people with chronic disease, which means they

share information and decision making with each other. 48,49

A supportive partnership is based on understanding, trust and respect. On the one hand,

health professionals need to acknowledge the client’s status as an equal partner, and display an

attitude of listening to and giving time to clients to talk about what they think. Previous studies have

suggested that, in order for effective communication, systematic training and education

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opportunities for healthcare providers are needed. 50-52

On the other hand, older people face big challenges in establishing such a partnership as

Chinese people respect authority and hierarchy much. Because of the traditional obedience to

doctors, older people are used to interaction initiated and controlled by doctors. Even though they

want to discuss more, they feel uncomfortable to ask questions directly of the doctor.

Therefore, opportunities to interact with professionals in a relaxing and encouraging

atmosphere should be created in future interventions. To communicate with doctors more

confidently, older people need to be assured of their status as equal partner. Simple strategies,

including making plans ahead of appointments, writing a list of questions and talking clearly and

concisely, can also promote communication efficiency.

Strengthening government support and surveillance

Though there are various reasons for deficits in communication between clients and health

professionals, resource constraint is an important one. GPs in CHCs treat an average of 24.1

clients daily in Shanghai. 53 The time arrangement for a visit is restricted, which may limit the

service that health professionals could deliver and irritate clients who require more.

In addition, clients’ negative moods toward the healthcare system curb health professionals’

enthusiasm, which is partially attributed to flaws in the Chinese medical insurance system. Basic

social medical insurance (BSMI) is the countrywide government system for healthcare financing.

Whilst it tries to provide universal coverage, there were still more than 300 million people living

without any medical insurance at the end of 2008. 54 BSMI is primarily targeted at hospitalisation

and critical diseases, with the reimbursement rates for outpatient care capped at 40% and 32% for

urban and rural patients and even those in the scheme still need to pay high amounts for

out-of-pocket expenses. 36

In China, medical facilities are self-reliant rather than dependent on the soft budget from

government. There are incentives encouraging doctors to persuade their clients to seek costly

diagnoses or expensive treatments, 36 which may strengthen clients’ suspicion toward health

professionals. Strong support and strict surveillance in the healthcare system is strongly

recommended, which is crucial to ease professional-client conflicts and repair mutual trust.

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Strengths and limitations

Because of voluntary participation of the study, the participants might be more interested in

self-management. Hence, those who declined participation might have more negative experiences

and might offer different insights about what makes self-management more or less difficult.

However, exploring perceptions from both people with diabetes and health professionals has

enriched the emergence of the data.

Conclusions

This study provided unique insights into barriers and facilitators to diabetes self-management

among people living in mainland China. Findings confirmed the deep seated influence of Chinese

culture. However, culture is changing, and an open attitude is essential to understand the

transition and plan relevant interventions. A comprehensive network, including family, peers and

neighbours, is both feasible and necessary in response to an increasingly ageing population and

family downsizing in China. Strategies to facilitate effective partnerships between client and

professionals are required. Through government surveillance and input to the healthcare system,

a better social environment can be achieved and related barriers can be addressed. The study

provided valuable information for diabetes self-management intervention development in China,

and has implications for similar programmes in other regions.

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Table 1 Demographics of focus group participants

Older people with

Type 2 diabetes

(17)

Gender n (%)

Female 8 (47.1)

Male 9 (52.9)

Age (years)

Mean 67.6

Range 60-75

Distribution within age ranges n (%)

60-65 y 7 (41.2)

66-70 y 3 (17.6)

71-75 y 7 (41.2)

Duration of diabetes(years)

Mean 11.5

Range 1-25

Distribution within duration range n (%)

<5 y 6 (35.3)

5-10 y 4 (23.5)

>10 y 7 (41.2)

Living arrangement n (%)

Living with extended families 9 (52.9)

Living with spouse only 5 (29.4)

Living alone 2 (11.8)

Others 1 (5.9)

Community health

professionals (16)

Gender n (%)

Female 9 (56.3)

Male 7 (43.7)

Position n (%)

RN 5 (31.3)

GP 6 (37.5)

Disease prevention & control staff 3 (18.8)

Administrator 2 (12.5)

Community working experience (years)

Mean 7

Range 3-15

Distribution within experience ranges n (%)

<5 y 6 (37.5)

5-10 y 6 (37.55)

>10 y 4 (25)

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