Setting and participants
We employed a qualitative analysis of group interviews with primary care providers. Focus group interviews were carried out from March 2019 to July 2020 in Guangzhou, Guangdong, China. As the capital city of Guangdong, Guangzhou has a huge population base and 18% of which were aged 60 years and above, reaching 1.69 million by the end of 2018 [18] .
The interviewees were recruited from 26 community healthcare centers using a purposive sampling approach. These centers included both urban and rural areas, scattered across the 11 districts of Guangzhou. The participants were purposively selected to include all three roles public health practitioners, clinicians and nurses, involving in community healthcare services provision. For the purpose of this study, we specially recruited those involved in diabetes treatment and management.
Data collection
In total, ten focus-group interviews involving 48 health professionals were conducted. The interviews, lasted approximately ninety minutes each, were carried out at either the interviewees’ respective health facilities or the Center for Disease Control and Prevention of Guangzhou when community health professionals from different areas gathered together for meetings. Each interview consisted of 4-6 health professionals, and was interviewed by two researchers, including one moderator and one observer. The moderator was responsible for inquiry and situation control, while the observer took field notes to capture the contextual information during the interviews. To obtain a broad range of information, interviews were semi-structured, and investigated health professionals’ daily work and practices related to diabetes management, the difficulties they encountered, and their attitudes and practices regarding family-centered care (see Appendix 1 for the interview guide). Saturation was achieved after ten focus groups, indicating that the information provided by the health professionals began to be repetitive and no new themes were emerging.
Ethical considerations
The study was approved by the Sun Yat-sen University Institutional Review Board (Approval no. 2019-064). At the time of conducting the interview, the method and aim of the qualitative study were explained to participants. All the participants provided written informed consent, and their statements were analyzed anonymously. All methods were carried out in accordance with relevant guidelines and regulations.
Data analysis
All of the group interviews were audio-recorded and transcribed verbatim in Chinese. The transcripts were coded with Nvivo 11 using inductive thematic analysis [19]. The data analysis aimed to provide a rich thematic description of the entire dataset, to explore and interpret the experiences of community health professionals related to managing diabetes with/without support from patients’ families. Informed by the research questions, we focused particularly on identifying the health professionals’ views and practices regarding family-centered care. Two researchers analyzed the data, then compared and discussed the themes and subthemes to reach agreement. The findings were then organized by topic, and verbatim quotations were chosen and translated into English to provide support for each theme.
Findings
Interviewee characteristics
As shown in Table 1, 67% of our interviewees were female, aged between 30-39 years. Nearly half of the interviewees were clinicians, over one third were nurses, and the rest were public health practitioners. Having practiced in the community for an average of 11.6 years (SD 8.4), our interviewees’ rich experiences greatly contributed to our study.
Table 1. Characteristics of the primary care providers interviewed (n = 48)
Characteristics
|
N (%)
|
Age, year
|
|
20 – 29
|
7 (14.9)
|
30 – 39
|
25 (52.1)
|
40 – 49
|
14 (29.0)
|
50 – 60
|
2 (4.0)
|
Gender
|
|
Male
|
12 (33.3)
|
Female
|
36 (66.7)
|
Profession
|
|
Clinician
|
20 (41.7)
|
Nurse
|
19 (39.6)
|
Public health practitioner
|
9 (18.7)
|
Years in practice: mean year (SD†)
|
11.6 (8.4)
|
Community type
|
|
Rural
|
16 (33.3)
|
Urban
|
32 (66.7)
|
†SD: standard deviation
Attitudes to and experiences of family-centered diabetes care
Acknowledging the importance of family involvement
Nearly all of the interviewees acknowledged the importance of family involvement. They recognized that family arrangements fundamentally impacted patients’ management behaviors, and the family’s coordination was essential for successful diabetes management, particularly for older males who relied on their wife for their daily management (e.g. meal preparation) and became forgetful with age.
Family monitoring is effective (for older adults), say, males like me do not know much about cooking. Many elderly (males) do not cook at all. No matter how much you educate him, he still relies on his wife (for meal preparation), so coordinating the whole family to change will be better. (Interviewee18, clinician, male)
and
Some older adults are stubborn and forgetful. If family members are around to help and monitor, it’d be much better. (Interviewee8, clinician, female)
The providers further noted that, for health professionals, the patients’ family members may greatly shift the diabetes management work and sustain the health education efforts beyond the clinical settings, if a shared understanding can be achieved. On the other hand, for the family members, the providers’ professional knowledge could help them to supervise older adults with diabetes to make behavior changes.
The family member is familiar with the patient’s living environment, can interact with the patient anytime, and is familiar with the patient but we (health professionals) can hardly go into the family. We can only update his/her (the patient’s) status when he/she comes (for an outpatient visit), or make a telephone call to intervene; we can only do these things. Family involvement is indeed good. (Interviewee20, head nurse, female)
and
Sometimes a couple came to visit, and I could feel that one partner did not follow the health guide, so the other (the wife) brought the husband to the doctor. ‘Listen, the doctor said that!’ she’d say. I knew he did not listen to the wife but, if the doctor suggested, he’d listen, so the two came together. The wife persuaded the husband through our doctor’s mouth. (Interviewee30, clinician, female)
Limited scope of practice with the family
In most cases, it is one family member who helps the other to take medicine. Probably the patient has a mobility issue or has to work. We may also ask (the family member) a little about the patient’s blood sugar or blood pressure levels. (Interviewee31, clinician, female)
The idea (to involve the family) has been there for some time as, when we promoted the family doctor program, it included the idea of family-centeredness. However, it has been implemented slowly. At the beginning, we planned to get a whole family to register with one (community) doctor. However, it ended up with individual patients registering with individual doctors. (Interviewee23, public health practitioner, female)
Barriers to involving the family in diabetes care
The providers perceived several barriers as affecting their practice of family-centered care, as listed in the upper panel of Table 2 and detailed below.
Table 2. Factors influencing Chinese primary care providers’ practice of family-centered care
Barrier
|
Explanation
|
Community healthcare context
|
Shortage of staff
|
Heavy workload
|
Institutional culture
|
A focus on disease treatment and control
|
Task-performance oriented
|
Family structure and arrangement
|
Patient’s family dynamics
|
Small family living far-apart
|
Weakened family connections
|
Facilitator
|
Explanation
|
Institutional endorsement
|
Clear guidance and support
|
Reinforcement of family-centered policies
|
Trained interdisciplinary teams
|
Community partner collaboration
|
Collaboration with social service organizations
|
Promotions by the government
|
Technology utilization
|
Flexible and timely communications with the patient family
|
Mobilizing intergenerational support
|
Shortage of staff and heavy workload
The shortage of staff and heavy workload in the community healthcare center made actively involving the patients’ families challenging. The providers mentioned that there were increasing numbers of adults with chronic conditions like diabetes in their catchment area, and many articulated a high imbalance in the provider-patient ratio, such as “There were over 1000 adults with diabetes (in my community), while we only have one (public health practitioner) in charge of (all) diabetes cases”. They complained about the difficulties of delivering the required diabetes management services with the limited personnel, and commented “the so-called four follow-up clinical visits (per year) is merely a formality”. Besides, they were overwhelmed with the other services of the National Basic Public Health Program, and were also the frontline response to public health emergencies.
During the COVID-19 pandemic, although the pandemic was not very serious here, we were on alert. Besides our regular services, we need to track each patient’s travelling path over the past 10 days, and conduct a door-to-door survey to check the residents’ health conditions. Recently, we took charge of a physical checkup for those travelling to China from abroad, and are about to carry out a physical checkup in primary school. (Interviewee23, nurse, female)
Family-centeredness is very good, but we could hardly go that far. It’s best if we can convince the (patient’s) family…but we don’t have the energy to do that, and we’re under constant pressure for various tasks. (In my community healthcare center), we don’t even have a person fully in charge of diabetic education and management. (Interviewee34, clinician, female)
A disease- and task-performance-oriented healthcare culture
The providers’ practice behavior was directly related to the work culture of the community healthcare center. Their work performance was mainly evaluated based on figures like the percentage of diabetes cases under control over all registered residents with diabetes. They thus paid more attention to achieving quantity rather than improving quality, and were occupied with paperwork and administration duties. They felt uncertain that taking the initiative to involve the family in the practice would be appreciated by their colleagues, managers and the organization. Without clear support and incentives from the administration, they were also worried about creating negative consequences and work conflict.
Our evaluation for (diabetes) management is based on the rate of diabetes under control over all registered residents with diabetes. Sometimes, we have to find more (potential patients) to meet the quota. We devote all of our efforts to achieving the figure. (Interviewee34, clinician, female)
The leader required us to prepare a perfect file and record for evaluation. This happened twice a year, and each evaluation lasted for one to two months. If the evaluation result was poor, the (government) fund to our center would be cut. We had to devote more time to that (paper work), and so the amount of time left to spend with the patient and their family was reduced. If there had been fewer evaluation indices, we could have offered more practical services to the patients. (Interviewee33, nurse, female)
Family dynamics and changing structures
When an old woman has diabetes, it is ideal if her husband and daughter care for her and take part in the disease management but, often, the reality is that her husband doesn’t pay much attention to it and her daughter is too busy to get involved. Besides, many families would not tell us (health professionals) much about their family issues. This involves their family relationships, which are difficult for us to intervene in. (Interviewee36, clinician, female)
Sometimes, the situation does not permit the younger generation to be involved. In our town, there are many hollow villages, with only older adults living there. Young people move to the city to work or study, and only return during vacations. How can you expect them to take care of their parents? (Interviewee35, clinician, male)
In our (urban) community, older adults often live independently of their (adult) children. Some are close to their children’s houses while others are far apart but, in general, young people are busy with their own business, and rarely accompany their parents to our center. (Interviewee38, nurse, female)
Facilitators for family-centered care in community
In view of the barriers outlined above, our interviewees nonetheless provided constructive suggestions about how to facilitate the attempts to improve family-centered care in community healthcare centers (Table 2 lower panel).
Endorsing a family-centered practicing environment
Overloaded by routine primary care services, the providers stated that it would be beneficial to have clear guidance and support from the administrators and leaders of their institutions on how they might enhance the involvement of the family in patients’ care. They reiterated that incentives and resources were needed to overcome the current obstacles.
The community healthcare center leader’s support is essential, because family involvement programs for diabetic patients are not our routine work and do not count toward our performance-based assessment. Only with the leader’s support will we have the staff and resources to carry it out. (Interviewee7, nurse, female)
and
Many resources and a lot of energy are wasted on administrative work…If family-centeredness was included as one of the evaluation indices, replacing an existing useless one, probably we would have more motivation to carry it out. (Interviewee35, clinician, male)
The further reinforcement of family-centered policies, such as the family doctor program, were essential to bring about changes in their current practicing environment. Some suggested that reform on the providers’ side, such as the rearrangement of the healthcare team, would be helpful.
We now organize our healthcare providers into teams (as suggested in the family doctor program): a clinician, a public health practitioner and a nurse. They can then share the healthcare work: ideally, the clinician focuses on the medical consultation, the public health practitioner conducts the follow-up, while the nurse gathers both sets of information and spends more time communicating with the older adults and their families. (Interviewee23, nurse, female)
Collaborating with community partners
Moreover, the providers indicated that the coordination between community healthcare centers, neighborhood committees (or village committees in the rural areas) and social service organizations should be strengthened in order to facilitate family involvement. They recognized that these community partners had wider, closer connections with the residents and their families, and could ideally compensate for the health professionals’ limited skill set.
Community healthcare centers can only access those who seek medical care. The neighborhood committee and the family service center (a type of social work organization) can more easily access the residents and their families. However, our center collaborates very little with these community-based organizations. The other two institutions will not do things that are currently not their responsibility. (Interviewee1, nurse, female)
and
Our target population and services overlap those of the neighborhood committee and the social service organization. They do not have medical expertise but we do, and they are more familiar with the local residents than us; hence we can help each other, but we do not collaborate with them much. A consensus has not been reached. (Interviewee42, nurse, female)
As acknowledged by the providers, their current chronic disease management services rarely involved community partners. However, this collaboration could work smoothly and successfully if it were promoted by the government, as in the case of combatting the COVID-19 pandemic.
During the COVID-19 outbreak, all community parties were mobilized and united: the neighborhood committee tracked and identified any positive case, notified us to make further medical verification, and then we managed the patient and their family together. If chronic illness management can be organized like an anti-pandemic effort, it would work far better. (Interviewee33, nurse, female)
Advancing connections with patients’ families through the use of technology
The providers suggested that mobile technology and telecommunication applications would facilitate the communication and connections with the patients and their families. Some of them had experience of organizing online patient consultations and education groups, especially during the peak of COVID-19, when the regular onsite medical services were interrupted.
The providers at our community center have organized remote consultations and live-streamed health education via popular social media and applications, like WeChat. Their record was to have over a hundred local residents participate online, a much larger group than we could normally achieve in offline education courses, which usually consist of, say, around 20 people. (Interviewee23, nurse, female)
They commented that these technology-powered initiatives provided more flexibility and possibility to collaborate with the patients’ families, and were particularly welcomed by the younger generation, who can assist older adults to adopt new technologies and behavior change.
We set up two (WeChat online) groups: one for diabetic patients and one for those with hypertension. We share health information (in the group) regularly…I believe this is the trend. For these older adults, who are unfamiliar with this new method of information communication, I encourage their children to teach them slowly. (Interviewee40, clinician, female)
and
We need to take advantage of the family’s influence. The information about diabetes or high blood pressures is more likely to reach young people. They could help us to spread the health information to their family, and promote behavior change within the family. (Interviewee45, public health practitioner, male)