The conceptualisation of patient-centred care: A case study of diabetes management in public facilities in southern Malawi

Background Patient-centred care (PCC) is one of the pillars of Malawi’s quality of care policy initiatives. The role of PCC in facilitating quality service delivery is well documented, and its importance may heighten in chronic disease management. Yet, PCC conceptualisation is known to be context specific. Aim The study aimed to understand the conceptualisation of PCC amongst patients, healthcare providers (HCP) and policy makers in Diabetes Mellitus (DM) management. Setting This study was conducted in DM clinics in Southern Malawi. Methods Our qualitative exploratory research study design used in-depth and focus group interviews. We interviewed patients with DM, HCPs and policy makers. The study used framework analysis guided by Mead and Bower’s work. Results Patient-centred care conceptualisations from groups of participants showed convergence. However, they differed in emphasis in some elements. The prominent themes emerging from the participants’ conceptualisation of PCC included the following: meeting individual needs, goals and expectations, accessing medication, supporting relationship building, patient involvement, information sharing, holistic care, timeliness and being realistic. Conclusion Patient-centred care conceptualisation in Malawi goes beyond the patient–HCP relational framework to include the technical aspects of care. Contrary to the global view, accessing medication and timeliness are major elements in PCC conceptualisation in Malawi. Whilst PCC conceptualisation is contextual, meeting expectations and needs of patients is fundamental.

Markedly, the success of PCC implementation and its appraisal lies in the clarity of its functional elements. For example, in the National Health-Care quality report by the Agency for Health Research and Quality (AHRQ), PCC showed a modest improvement of 1.9% increase in its contribution to the overall improvement in quality of care, lagging behind patient safety (10.3%) and efficiency (3.0%). 8 The lag was largely related to the vagueness of what constitutes PCC, which thwarted its implementation and appraisal. Most African literature offers no specific conceptualisation. However, some elements such as 'people first', accountability to the patient, holism, communication, HCP attitudes of friendliness, respect and empathy and family involvement do emerge in describing PCC. 9,10,11 This makes PCC conceptualisation blurry and hampers its successful implementation.
Literature records variations in PCC conceptualisation, largely depending on context and whose perspective is being represented; whether patients or HCPs. 12,13,14,15 Conceptualisation refers to the process of breaking down concepts into common functional meanings. 16 The Institute of Medicine (IOM) conceptualises PCC as care that is responsive to individual patient preferences, needs and values, ensuring that patient wishes guide all clinical decisions. 17 The reliance on patients' perspectives, values and wishes to guide all clinical decisions may appear consumeristic and would promote unhealthy patients' agenda, falling short of scientifically sound patient care decisions. Marshall et al. advise that good conceptualisations should be co-constructed using the perspectives of both the patient and HCPs. 18 Fundamentally, PCC meaning should include elements that go beyond following patients' wishes by balancing patients' preferences with contextual evidence, available resources and HCP considerations in a favourable interaction.
Mead and Bower's PCC conceptualisation highlights practical elements as functions to be fulfilled during the patient-HCP encounter. These functions include the following: therapeutic patient-HCP relationship building, bio-psychosocial care provision, individualising the patient as a unique person, sharing power and responsibility and being realistic of the doctor as person. 12 Whilst close to the epitome, this conceptualisation may not apply wholesale especially in health contexts that are paternalistic, with marked low patient medical literacy and limited human and therapeutic resources that may affect interactional behaviours. 19,20 In chronic diseases, it is important to understand PCC interactions as they facilitate better care experiences and reported outcomes leading to patient empowerment and a proactive patient-HCP team. 21,22 Some stated outcomes include patient satisfaction, perceived quality of care, patient adherence to management plans, reduced emergency visits, complications, patient empowerment and self-care and glycaemic control. 22,23 In their meta-analysis of 109 correlational studies and 21 experimental studies, Haskard and Dimatteo found that HCP training on PCC was associated with 0.16 higher odds of patient adherence. 24 It is vital to note that the evidence in literature is favourable to a patient-centred interaction in the management of chronic conditions such as DM. As we strive to advocate for PCC in chronic care encounters, it becomes imperative to gain its conceptual understanding. The study therefore sets out to understand the conceptualisation of PCC and highlight its functional elements in Malawi.

Study design and setting
The study employed a qualitative exploratory approach. We collected data from four public hospitals' DM clinics in the southern region of Malawi and the Ministry of Health headquarters. Because the public health sector is the biggest service HCP in Malawi, it was purposively chosen to highlight what PCC might look like in the sector. The four public hospitals included Queen Elizabeth Central Hospital (QECH), Zomba Central Hospital, Chikhwawa District Hospitals and Mulanje District Hospitals, and these were conveniently selected to highlight a mix of both urban and rural views. We selected policy makers at the Ministry of Health (MOH) headquarters, chosen from the Quality Management Directorate (QMD) and the Non-Communicable Disease and Injuries (NCDI) Directorate because of their influence in the development of chronic care policies.

Study population and sampling
We interviewed 37 patients with DM, 33 HCPs and two policy makers. Healthcare providers encompassed nurses, clinical officers and medical doctors who are directly involved in DM care in defining the problem and rendering care.
The nurse in-charge purposively selected participants who were at least 18 years old, clinically stable and able to give a verbal and/or written consent to interviews and/or audio recording. Participants who could not give a written consent were excluded from the study.

Data collection tools and procedures
The first author collected data using a semi-structured interview guide (Appendix 1). To encourage the participants to open up, we initially asked them to describe their typical patient-HCP interactions. We later zeroed in on to discuss their understanding of PCC.
The first author conducted individual in-depth interviews (IDIs) and focus group discussions (FGDs) to obtain both individual and collective meanings of PCC. One FGD was conducted at each facility and each FDG included between 10 and 11 participants. Patients and HCPs were in separate FGDs. Because of logistical challenges of getting enough policy makers together, no FGD was conducted with them. Focus group discussion participants' selection followed the stated inclusion criteria.
We interviewed patients during their routine visit after obtaining care for that day, whilst clinicians were interviewed after their clinic duties. All interviews took place in secure rooms within the facility to maintain privacy. Data were collected from September 2019 to December 2019.

Data management and analysis
Three research assistants translated the audio data from Chichewa into English and transcribed them verbatim. Later, we imported the data into NVivo software version 11.
The data analysis process started in the field by recording and exploring further on the themes that came out recurrently. Further analytical processes involved familiarisation, coding and mapping data against a Mead and Bower's framework. Familiarisation with the data set was done through reading transcripts repetitively by the first author. Through this step, we identified the recurrent themes inductively from participants' accounts until saturation. With input from the last author, the themes were grouped manually to come up with the initial codebook, which was iteratively refined through further discussion with the third and last authors. Exemplar extracts were then mapped against the codes.
We ensured triangulation of views presented in this study by collecting data from three participant categories, namely patients, their HCPs and policy makers. Moreover, member checking and the use of two data collection methods (FGDs and IDIs) allowed triangulation of individual and collective viewpoints. For quality assurance purposes, two randomly sampled transcripts were coded by the first and the third authors concurrently. The identified differences in coding were discussed and resolved. We achieved conformability by counterchecking the codes. The counterchecking process was done by an individual who was not in the study group to mitigate the effect of researchers' prior predispositions about PCC.

Findings
We conducted 31 individual participant IDIs (16 patients, 13 HCPs and two policy makers) and four FGDs. The distribution of the participants' socio-demographic profile is shown in ( Table 1).

The general conceptualisation of patientcentred care
Regarding the general understanding of PCC, the HCPs seemed to express some familiarity with the term and offered meanings similar to what literature offers. Conversely, some patients expressed difficulty in understanding PCC and, consequently, attempted to simplify the term in their own understanding and provided alternative terms. This is exemplified by the following participant response: '… I think you asked that how do I see that I have been satisfied with the care we receive here once we have entered into the hospital premises.' (37-year-old, urban-based, female patient) Not all conceptualisations were presented explicitly as meanings but also as experiences and expectations of care. Furthermore, the participants stated that PCC is the care that satisfies the patient, brings happy emotions and signifies government's commitment to 'best care' delivery. In that regard, one participant observed the following: 'In my opinion, I think the government wants the patient to be centred. An evidence of that the government wants the patient to be centred is that 3 weeks ago I was also selected to be part of a certain research. So that research is trying to find out the exact drugs meant for Africans. So, on that I think the government is very much interested to give the best care to its people.' (62 yearold, urban-based, male patient) The emergent themes and their functional elements are summarised in Table 2. It is noted that most of the themes were validated by all stakeholder groups with minor expression differences. To highlight the study findings' comparability with prior works, the results are mapped against Mead and Bower's framework. 12

Meeting individualised needs, goals and expectations
The healthcare workers reported that PCC meant tailoring care with unique individual needs, life circumstances and expectations. In that vein, one participant observed the following:  The availability and access to adequate medicines were regarded as a basic need, expectation and requirement for appraising a PCC encounter. Harsh and hurried encounters are reported by the patients. Again, the patients highlight that warm receptions and friendly environments can create trust and openness that facilitate the building of therapeutic relationships even in the face of limited therapeutic resources.

Supporting relational aspects of care
Given the relational power dynamics that exist during patient encounters, the HCPs recommend that relationship building, recognition and minimising the power gap should be their initiative using simple and socially appropriate strategies. In that regard, one participant observed the following: '… I was telling, just two days ago, [t]he colleagues hear simple concepts on how to put chairs in consultation rooms. Put the chairs in a way that you tell the patient that I am your friend […]. So that is something very simple, the way you are going to set your encounter, furniture so to establish that friendship.' (50-year-old, urban-based, male, HCP)

Patient involvement in care
Although expressed differently between patients and HCPs, the theme depicts a spectrum of tasks in shared responsibility and decision making, from a mere assent from patients to empowering patients with information for decision making.
The patients expressed the desire to be consulted before care decisions are made, as illustrated in the following verbatim response: '… But just making decisions without the knowledge of the patient, sometimes it becomes a problem.' (38 year-old, urban-based, female, patient) In contrast, and for HCPs and policy makers, PCC goes beyond assent and involves the patient from designing the need-based services to negotiating care choices with mutuality. The HCPs agree that patients should be active recipients of care and their capabilities leveraged, as observed in the following participant response: 'So, I am saying that patient-centred care is all about putting the patient at the centre of the care.
[…] So when you are designing systems, or programmes, the programmes should be based on the needs of the patient, not making your patient follow the system or making the patient to be a passive recipient of care but should be in a position that is driving the care to them.' (37 year-old, MOH, male, policy-maker)

Informing, educating and counselling
This theme was very prominent both for HCPs and patients. It captures that PCC encounters should be an opportunity for information sharing. The information could be shared through counselling and when educating patients about disease, its treatment and prognosis and the expectations of care. In light of this, a patient observed the following: 'When they counsel us on which foods to eat and not to eat … they counsel us on marriages because, sometimes, there is a decrease in libido.
[…] Also, as diabetic patients, we are advised bathe every day because we develop a very pungent odour due to the diabetes.' (60-year-old, rural-based, female, patient) Furthermore, emphasising PCC as an information-sharing function, it empowers patients to make informed choices, as reflected by one HCP: The participant verbatim responses further highlight PCC as a comprehensive assessment and management of patients' problems over one or several encounters. Wholesomeness also extended to include managing patients throughout their illness by a team that includes the patient, as reflected in the following response: 'Patient-centred care is basically the total care given to a patient as a team. Everyone has a part to play. Be it doctors, nurses, patients as well as guardians.' (34-year-old, urban-based, male, HCP)

Timeliness of care
Untimely care was expressed as an expected yet failed element of PCC amongst patients and HCPs. Timeliness referred to how urgent care is delivered and the length of time patients spend at the clinic. This is, in part, reflected in the following participant response: 'Sometimes the reception we receive is not good. A patient might come here in the morning without being attended to until evening, and that disappoints us. We should properly be received and the HCPs should attend to us […]. What we want is punctuality.' (18-year-old, urban-based, male, patient) Moreover, the HCPs also expressed the awareness that delays in service provision affects the patients' perception of patient centredness. In that regard, one participant observed the following: '… Even sometimes they [patients] become angry because they have been waiting for a longer time and for the conversation to be OK, it becomes very difficult because they feel like they are not being taken care of because […] the clinic started late.' (25-year-old, urban-based, male, nurse)

Being realistic and pragmatic
Most HCPs related their conceptualisation of PCC with realism, further articulating their frustration with the systemic constraints, as illustrated in the following verbatim response: http://www.phcfm.org Open Access 'We want the care to be patient-centred such that we want to make plans with the patient, but it has not possible because of human resources. Sometimes, HCPs look at the queue that is outside, maybe 40 to 50 patients. I think that is why we are failing because we want to finish the line but not necessarily having enough time to manage the patients.' (40-year-old, MOH, male, policy-maker) Whilst acknowledging the challenges in realising PCC, the HCPs suggested some simple and practical tips for improvement.

Discussion
This article discusses the functional elements in the conceptualisation of PCC, its similarities with prior frameworks and the peculiarities to this context. The centrality of meeting patients' needs and expectations of care, and relationship building, is highlighted. Furthermore, the study reveals how patients and HCPs perceive some failed elements of PCC and their realistic approach in the face of limited human and therapeutic resources. Based on the collective meanings, this article proposes a working definition.
We conceptualise PCC as meeting individual patients' needs, goals and expectations, especially as it relates to health system responsiveness. 22,25,26 This is consistent with Tolib et al.'s systematic review of literature, in which the authors noted how receptivity to patients' needs and expectations was important to appraise quality from patients' perspectives. 26 The patients, in our study, expressed receptivity by narrating or rating experiences of their care. Individual patient needs included supportive diabetic education, amicable relationships and glycaemic control, whilst expectations consisted of access to medication. Overall, we found that measuring experiences of the interaction may be a proxy for measuring the quality of PCC.
Receiving DM medication is an emphasised and peculiar element in this context. Even though it falls outside the conventional patient-HCP interactional-based definition, it is not surprising. The emphasis is likely because medication is a basic need for every patient with DM and, therefore, the most sought-after aspect and gauge for appraising PCC. 27,28 More so in this resource-constrained setting like Malawi, the prominence of this element is heightened by medication shortages that are prevalent. 29 Functionally, the finding highlights the centrality of meeting the basic patient needs, be it technical or interpersonal.
Even in the face of limited medicinal resources, the patients emphasise that relationship building is a valued element in PCC encounters over infrastructure and doctors' knowledge. 22 The positive role of the perceived quality of relational dynamics in DM patient-HCP interaction is confirmed. 30,31,32 A multi-country Diabetes Attitudes, Wishes and Needs (DAWN) study reported a positive association between better patient-HCPs relationship and patient outcomes. 33 Specifically, the emotional elements of the unrushed encounters based on HCP attentiveness, warmth, empathy, trust and opportunity to respond to patient's questions were highly associated with reduced diabetesrelated distress and hyperglycaemic symptoms, better glycaemic control and general well-being, lifestyle and medical regimen adherence and perceived diabetes control. 33 This confirms the proposition that investments made in relationship building can improve health-seeking behaviours and patient outcomes.
Patients' active involvement in care is a desired element of PCC amongst patients with DM. 34,35,36 Whilst HCPs conceptualise active involvement from design to delivery of care, patients largely experience assent. This is partly explained by the difference in how patients and HCPs approach the interaction in this context. Because of the social and power gaps between patients and HCPs, 37,38 patients often approach the interaction from an uninformed and powerless perspective, 39 and this reduces their propensity to actively participate. Again, whilst HCPs report patients' involvement with normative standards, but, in practice, they often make contextually negotiated decisions as the extent to which patients can be involved. 40 Consequently, patients' experience and perception of involvement are often limited to assent and being grateful recipients of care.
Like other frameworks, information sharing is an important element and serves communicative roles such as informing, educating, counselling, reprimanding, validating, supporting and empowering patients to make informed choices. 41,42,43 Although most of these facets of information sharing are important, the HCPs, in our study, uniquely identify that PCC is about information that empowers the patient to choose what is ideal for self-care. Mulder et al. confirm the role of transformative education as a basic tenet of diabetic PCC. 43 Mulder et al. point out that transformative education empowers patients to be active participants within the provisions of PCC.
Holistic care in this study encompassed attending to biopsychosocial aspects of patients' life throughout the illness journey. It also included holistic management of the patients' bio-psychosocial aspects by a multidisciplinary team that includes the patients themselves. Holism is validated as a coordinated care that addresses patients' needs at the juncture of the bio-medical 'pathology', the person experiencing the pathology, their context (bio-psychosocial) and the nature of the interaction between the person and their context. 44 Even though holism sounds complex, the acknowledgement of the patient as an active partner in the team is commendable in this context.
Untimely care is perceived as a failed element of PCC. Timeliness of care gives the perception of better healthcare care organisation and access that is core to PCC experience. 45 Even though WHO highlights timeliness of care as a distinct element of quality, understandably, the participants, in this study, pointed out to long waiting times as undermining efforts towards PCC. This, therefore, needs to be addressed.
Being realistic is a crucial contextual element in PCC operationalisation. It is expressed as the frustration of the HCPs of knowing the elements of PCC, yet being unable to practise, or employing workaround behaviours and alliances in order to be pragmatic. From the perspective of an optimist, it is a sign of acknowledgement of shortcomings and positive attempts towards advancement of PCC in the face of systemic challenges. 46 Contextual challenges purportedly explain the employment of workaround strategies and the redefinition of PCC to what is practically possible. 40 Thus, as we continue to advocate for government's commitment towards conducive environment for PCC, we ought to view contextual moderations as a crucial element of any PCC conceptualisation.

Conclusion
This study confirms the complexity and interrelatedness of PCC elements. In the Malawi[-an] context, we conceptually understand PCC as an expected care process that incorporates warm patient reception, where the HCP consciously aims to reduce the patient-HCP power gap to harness a good long-term relationship. This creates a conducive atmosphere that allows gathering of information that holistically identifies the individual specific problems and all possible interacting factors, ensuring timely access to care and medication.
The functional elements of PCC are, in many ways, similar to those in literature. However, its expressions go beyond the patient-HCP interactional realm to include the wider organisation themes such as access to medication, amongst others. We expect that these findings will contribute to the actionable dialogue around PCC to clearly communicate its transformative vision.

Recommendations
Whilst Malawi is striving to be patient centred in its chronic care delivery, it needs to address the wider organisational issues in the work environment and the supply chain to realise PCC practice. The HCPs' pre-service education must include skills in relationship building and information sharing that essentially empower the patient to demand and participate in PCC.

Ethical considerations
The study was approved by both the University of Malawi

Data availability
Data sharing is not applicable to this article as no new data were created or analysed in this study.