Personalised care and support planning in Singapore: qualitative interviews with people living with diabetes

Background Personalised care and support planning (CSP) is a person-centred approach for the care of people living with long-term conditions. Patient Activation through Community Empowerment/Engagement for Diabetes Management (PACE-D) adapts the Year of Care Partnerships (YOCP) approach to CSP in the UK for people living with diabetes at Singapore polyclinics. Polyclinics are multi-storey primary care hubs that provide affordable, multidisciplinary, comprehensive, and high-throughput public health care for the multi-ethnic, multilingual Singapore population. Aim To explore the experience of PACE-D-enrolled people living with diabetes with personalised CSP at Singapore polyclinics. Design & setting Qualitative interviews of people living with diabetes who experienced personalised CSP at National University Polyclinics (NUP) in Singapore between July 2020 and November 2021. Method PACE-D-enrolled people living with diabetes who experienced personalised CSP were purposively sampled. In-depth semi-structured interviews were recorded, transcribed, and analysed using Braun and Clarke’s reflexive thematic analysis. Results Fifty-two patients participated in the study. Four main themes were identified. Theme 1 was the importance of the care-planning letter. Patients reported that the CPL prompted reflection and patient preparation for CSP conversations. Theme 2 was the role of the programme coordinator. PACE-D programme coordinators amplified self-management by playing advocate and confidant beyond administrative duties. Theme 3 was the value of the personalised CSP conversation. CSP providers were perceived as partners in care, with more time to listen compared with usual consultations. Patient engagement was affected by language confidence. Theme 4 was agency in self-management. With adequate time and support, patients increased in confidence and agency both in CSP engagement and diabetes self-management. Conclusion While language confidence may affect patient engagement, personalised CSP shows promise for strengthening patient engagement and self-management among people living with diabetes at Singapore polyclinics.


Introduction
3][4] Personalised care and support planning (CSP) or the 'anticipatory negotiated discussion or series of discussions between a patient and a health professional to clarify goals, options, and preferences and develop an agreed plan of action based on this mutual understanding' 5 is a theory-informed, person-centred approach that engages patients to live well with their diabetes and other LTCs.With decades of iteration in the UK, the Year of Care Partnerships (YOCP) approach to personalised CSP reframes the purpose of LTC care from 'helping the person to manage their condition' to 'helping the person to live well with their condition'. 1 With a geographical location in the World Health Organization (WHO) Western Pacific that is projected to be the global epicentre of diabetes for the next century, 6 Singapore's multi-ethnic residents are a sociocultural albeit English-speaking microcosm of the region.With alarming rates of diabetes

Method
Semi-structured interviews were conducted between July 2020 and November 2021 by two research trained non-clinical interviewers (ML and ASL).We recruited people living with diabetes who underwent personalised CSP with PACE-D teamlets at Pioneer and Jurong Polyclinics of the National University Polyclinics (NUP) cluster.Participants were purposively sampled for diversity in terms of age, sex, and ethnic group. 18A preliminary topic guide was developed from our literature review 19 with input from key opinion leaders and the study team, and then piloted to assess suitability of questions (Supplementary Table S1).
Study participants provided written informed consent.There were 55 initial participants; three interviews were removed owing to poor quality data (for example, difficulty in understanding participant and/or background noise or conversation not recorded), resulting in a final sample of 52.Of these, 46 were interviewed in English, three in Malay, and three in Mandarin.Fifteen interviews were conducted in-person at the study sites, 34 via phone, and three via Zoom amid COVID-19 restrictions.Study participants received SGD50 (approximately GBP30) for participation.Interviews were conducted iteratively, with field notes taken after each interview.Interviews lasted 26-85 minutes, were audio-recorded, transcribed verbatim, and de-identified before analysis.Non-English interviews were translated by native speakers before analysis.
Data were analysed concurrently with collection.Analysis was guided by Braun and Clarke's reflexive thematic analysis framework: familiarisation, generation of codes, searching for themes, reviewing of themes, and defining themes. 20Interviews were transcribed on Microsoft Word and imported onto Microsoft Excel, and organised for coding. 21Analysis was initially conducted inductively to have a comprehensive understanding of the collected data, before moving to a more deductive nature in order to map the themes and codes to the overall process of personalised CSP as used in the Singapore polyclinics (Figure 1).
Three researchers (ML, research associate; VL, CSP practitioner and family physician; and KV, primary care physician and researcher) developed the codebook iteratively to guide analysis.ML read and coded all interview transcripts.VL and KV read several transcripts independently and reviewed the codes.To mitigate any risk of bias from having two interviewers (ML and ASL), we checked and found that codes and themes identified were not disproportionately attributed to the transcripts of any particular interviewer.
To ensure reflexivity, interviewers explained their backgrounds to participants before interviews and kept a reflexivity journal.The multidisciplinary research team (primary care, public health, and endocrinology) regularly met to critically debrief, reflect on underlying assumptions, and discuss the research data to attain consensus in the codes and themes.The study team judged that thematic saturation occurred two-thirds into recruitment.Recruitment continued beyond this in accordance with our goal of achieving heterogeneity through purposive sampling. 22A summary of our findings was shared with participants for their feedback. 23ur reporting conforms to the Consolidated Criteria for Reporting Qualitative Studies (COREQ) reporting guideline.

Results
We interviewed 52 participants.The median participant HbA1C at the time of interview was 7.4%.The demographic and clinical information of our participants (n = 52) are available in Table 1.The themes and sub-themes are summarised in Table 2.
All quotes are verbatim and include Singaporean English (Singlish) expressions, which may appear unusual to readers accustomed to British English. 24The expression 'lah' punctuates Singlish speech to indicate emphasis.Some edits in the quotes indicated by parentheses [...] have been added to increase clarity for the reader.We have included additional quotes to support the themes and sub-themes in the Supplementary Table S2.
The main themes and sub-themes demonstrate how people living with diabetes experience the different elements within PACE-D, ranging from the experience of preparing for the consultation with the CPL to developing agency and creating goals for themselves.The importance of the careplanning letter The CPL in the form of a handy booklet that summarised the latest investigation results as coloured charts were mailed to PACE-D patients 2 weeks before their CSP appointment.

Preparation for the personalised CSP conversation
The CPL prepared patients who engaged with it for more effective CSP conversations.The results were a 'talking point' (P26) that spurred important discussion topics without need for 'beating [around] the bush' (P31).The CPL meant that the participants could consider their answers: Being CPL-equipped shifted the provider-patient dynamic in favour of the patient; they now had a greater voice in the CSP process.

The challenge of language proficiency
In linguistically diverse Singapore, the CPLs were made available in English, Malay, and Mandarin Chinese.Nevertheless, language proficiency often challenged patient engagement with the CPL, and thereby with CSP itself.Given both spoken and written language proficiency may be related to culture and education levels, we provide the participants' cultural group and highest level of education achieved with the quotes in this section:

'I asked myself, "How do I go about filling this [CPL]?" I did not have the confidence … I don't know how to.' (P30, Chinese female, secondary school)
Patients who lacked confidence with the written language relied on family members, and often on the programme coordinator to read and to make entries in the CPL on their behalf:

The role of the programme coordinator
The roles of the programme coordinator beyond administrative matters surfaced as an important theme in our study.

Ensured smooth running of programme
The programme coordinator's main role was to ensure that PACE-D operations would occur smoothly despite the busyness of each day at the polyclinic.This included scheduling appointments, preparing CPLs to be mailed off, linking patients with social care activities, as directed by the CSP practitioner, and re-printing the CPL when needed:

Programme coordinator as advocate
Beyond administrative duties and merely taking 'a quick glance' (P24) at the results booklet, the programme coordinator was noted for encouraging patients to actively engage with the CPL.This patient describes being assisted by the programme coordinator before the CSP conversation:

'[The programme coordinator] go through the [CPL] with me and tell me about my results. I … tell her that I want to exercise more, but I don't know how to do it indoors to make myself burn out the calories … she just writes [this concern] down for me [on the CPL booklet, so that] later [I] can ask the doctor lor.' (P36)
The programme coordinator's role was described in terms of a supporter and advocate:

'[The programme coordinator] … actually gave me … a kick in the ass, to let me think [about] why it [the results] became like this or how you should do to improve, and how to improve it [so that I] can check with the doctor [later].' (P33)
As a result, some patients were better prepared for the personalised CSP conversations that they 'got a lot [more out of my conversation] with the doctor' because 'normally I won't talk about anything' (P47).

Coming alongside with empathy
Beyond coordination and facilitation of CSP engagement, programme coordinators provided a safe, empathetic space where authentic concerns were aired: staff is more a like er supplementary role to help the doctor in helping the patient improve on the health through the build-up of community, social [pause] activities … togetherness.'(P10) This made a difference in how patients engaged in the programme.Having 'someone there to care for my health and … taking the effort …' encouraged patients to 'put in effort in the whole programme' (P49).

The value of the personalised care and support planning conversation
The personalised CSP conversation was designed to be a meeting of experts: the CPL-equipped and prepared patient, and the trained CSP practitioner.

Healthcare provider as listener
Having been listened to in the CSP conversation was appreciated by participants.They observed that unlike 'usual' consultations, CSP practitioners who could be a family physician, nurse care manager, or pharmacist, patiently listened to their illness narrative during CSP: '[The CSP practitioner] has a lot of patience.He will explain things to you.Some doctors … just write, write, write, write, write okay, done, then did not say much.But this particular doctor did share with me a lot in different areas lah.' (P30) This patient appreciated how this CSP practitioner took time to listen: '… the doctor was very good la, very good ah, he wanted to listen, he wanted to listen.' (P25) This yielded dividends in terms of greater patient engagement: Even when pressed for time, practitioners managed somehow to not rush the patient: 'At least he did not give me the sense that he's rushing', this made the consultation feel 'a little more personal' and 'if I have a question, he has time to answer' (P49).

Practitioners and patients as partners
With more time for listening, most patients found the personalised CSP conversation to be less 'instructional' and more 'participatory' (P22).As described: '… there's dialogue and OK because we discussed, he nudged me, [at first] I resist a little bit but [later I] gradually opened up … it was a friendly thing … he was offering suggestions, but leaving a lot of suggestions to me.' (P26) The patient-provider power dynamic was also observed to be more balanced: '… the consultation [has] now really change [d], where it's a 2-way traffic …' (P21) This affected the patients' perceptions of the CSP practitioner, with some describing the practitioner '… like a friend' (P16).Others used the words 'personal' and 'partners' who jointly worked towards patient goals: '… the whole consultation was more … professional but it's personal … The other one ['usual' consultation] is very professional … very data based.This one [personalised CSP] is very professional but [also] personal …me and the doctors are partners in trying to reduce or take care of my health.'(P49) how the programme coordinator's role mattered.In addition to administrative issues, they provided resources, nudged agency, and offered a listening ear to people living with diabetes.We are intrigued by how a dedicated and motivated albeit non-medically trained team member (for example, health peers, health concierges) could open up pathways in the optimal care of people living with diabetes and other LTCs.
Third, we need to research how time may be best used.Time is a scarce resource in health care.For personalised CSP, it helps to think about time 'during' and 'in between' the CSP conversation.
When thinking about time 'during' the CSP conversation, time is needed for the CSP process.In contrast to rushed 'usual consultations', participants cited how they were thankful for the time set aside for constructive discussions.They felt listened to, found a voice for their doubts and concerns, and partnered with providers in the care of their LTC.
Time is needed to develop agency.Our data has shown that repeated annual CSP conversations facilitate self-management.Insights gained during the consultation helped patients transition from mere contemplation to decisive action.
When thinking about using time 'in between' the CSP conversation, while preparation time (Figure 1) is set aside in the design of CSP process, we found receiving the CPL can be a trigger for patients.Only a small minority of patients give the letter a brief glance.Most patients derive substantial insights from it.A significant number harness the CPL to better understand the nuances of their health.Others proactively contemplate its contents, even discussing their reflections with the programme coordinator before CSP conversations.Whether immediate or deferred, the letter has a marked influence on most patients' approach to their health journey.
Research is also needed on going beyond diabetes and beyond polyclinics.Our study focused on the care for people living with diabetes, an archetypal LTC.Many of the factors required for self-management would be echoed in the management of other LTCs, for example, hypertension.Researchers see a role for CSP for the care of LTCs beyond diabetes.
In addition, personalised CSP has the potential to be extended from the public polyclinic setting to the private general practice or family practice setting, which provides an estimated 80% of primary care in Singapore. 35astly, research must consider non-English speakers.With just three participants who were interviewed in non-English languages in this study, we are unable to make conclusions about how non-English speakers experience personalised CSP.There may be value in specifically sampling Asian language speakers for their experience of CSP.The potential of personalised CSP to strengthen selfmanagement may be an important strategy to contain rising numbers of patients with diabetes and other LTCs in Singapore, and other countries in the region.

Figure 1
Figure 1 The process of personalised care and support planning (CSP) in Patient Activation through Community Empowerment/Engagement for Diabetes Management (PACE-D). 6CPL = care-planning letter.

'
… when I [am] with the doctor [and hear] some of the questions that they asked, I think I am quite ready with the answer because I thought through it.'(P49) With the CPL on hand, patients could enter more deeply into the CSP conversation and therefore more deeply into their own self-care: 'Once upon a time … only the doctor [was] looking at the screen [with the results] … But since you have [the CPL] in your hand and you receive it beforehand … you are ready, prepared to ask him some hard question[s].'(P31)

'
… old people face a lot of problems [laughs].They have a hard time to express, like me too.' (P25, Malay female, polytechnic diploma) Patients reported that their confidence increased with each CSP cycle: '… the first time when I get the form you sent me … I still don't really understand.The second time, I understand better.The third time also understand a bit more.' (P41, Chinese female, primary school)

'
I will be more open up to ask, more open up to find out how I can control better.' (P24) Time for relational communication Consultation time set aside for the CSP allowed more constructive conversations to occur: '… if the time is too short, we will sometimes forget what to ask.' (P41) The consultation ceased to feel rushed: '[The CSP] was more thorough than my normal you know, hello-goodbye … now I'm a familiar face to them … the doctor was not in a rush to see me.' (P47)