The experiences of the caring dyad: (Un)articulated realities of living with cardiometabolic risk, metabolic syndrome and related diseases in severe mental illness

Abstract Background Informal carers play an important role in the care of patients with mental illness. Little is known of the relationship experience of the patient and their informal carer (caring dyad) as the context for the intersection between physical and mental health. Aim This study aimed to explore the impact of comorbid cardiometabolic risk (CMR), metabolic syndrome (MetS) and related diseases and severe mental illness (SMI) on the caring dyad. Design Between October 2018 and March 2020, we conducted 11 in‐depth semi‐structured interviews across 6 adult caring dyads, interviewing each individual separately. Setting Dyads were recruited within the United Kingdom; informal carers were nominated by the patient as a person who provided a significant amount of support. Variable Being Studied Participants were asked about the impacts of illness and caring on daily life. Data Analysis Data were analysed at the dyad level using thematic analysis, comparing and contrasting responses from each individual. Results Themes were identified: enhanced closeness, dissonance and balance within the caring dyad. Discussion and Conclusions This study uses a particular population of patients with comorbid CMR factors, MetS and related diseases and SMI and their informal carers to explore the relevance and utility of caring dyads as an analytical framework to inform practice and policy. Future interventions should consider factors impacting on dyadic relationships to formulate effective and sustainable dyadic care and treatment to improve health outcomes for both patients with SMI and their informal carers. Patient/Public Involvement In this study, patients and informal carers were participants. Topic guides were piloted with a patient and informal carer.


| INTRODUCTION
Informal carers play a vital role in supporting patients with severe mental illness (SMI) 1 and are an important social contact for patients who experience high levels of social exclusion, isolation, loneliness and stigma. Informal carers may be the first to notice signs of relapse in mental health 1,2 and often help patients engage with treatment. 3,4 Quality of life may be improved in patients with support from informal carers; 5,6 they play a fundamental role in advocating and engaging service input and support. 7 Support from carers is associated with significantly reduced rates and duration of psychiatric hospital admissions 8 and is acknowledged in relevant guidelines. [9][10][11][12][13] Patients with SMI have poorer physical health and reduced life expectancy (approximately 15-20 years) compared with the general population. 14 The majority of deaths in patients with SMI are due to preventable physical diseases, in particular, cardiovascular disease (CVD); they have a 2-3 times higher risk of dying from CVD compared to the general population. 14 This mortality gap exists in countries considered to have high standards of healthcare 15 and can in part be accounted for by a higher relative risk 16 for modifiable cardiometabolic risk (CMR) factors, metabolic syndrome (MetS) and related diseases.
Informal carers typically play an essential role in supporting patients to manage their illness and CMR, MetS and related diseases, contributing to patients' healthier lifestyles by, for instance, advice about food choices or preparing meals. 17 They also support attendance at health appointments and participation in physical activities. 17 This study focused on a sample of patients with comorbid SMI and CMR, MetS and related disease and the nature and consequences on their lives and illness of the involvement of their informal carers.
The aim of this study was to explore the impact of comorbid CMR, MetS and related diseases and SMI on the caring dyad. The objectives are to 1 explore the role of the caring dyad and 2 explore the utility of the caring dyad as the unit of analysis (as opposed to individual experiences) in this space.
Sustainable lifestyle modification and pharmacological treatments are needed to address CMR, MetS and related diseases 14 and typically rely on informal carer participation. 17,18 We argue that to understand the complex interactions that underpin the management of long-term comorbid conditions, it is necessary to situate the experience of patients within the context of the caring dyad. Similarly, the experience of illness is understood far better as a product of interaction within a dyadic relationship. Comparing and contrasting views of everyone within the dyad generate knowledge of the coconstruction of illness management within the dyad and the limitations of clinical engagement solely with a patient.

| Caring dyad
Our analysis draws on the interdependence theory [19][20][21] to understand CMR, MetS and related diseases and SMI and their link with closeness, dissonance and balance within the caring dyad. This theory considers the ways in which bilateral influence within the dyad affects the outcomes (behaviour or experience) of individuals. The dyad provides a critical unit for the analysis of health behaviours 22 where the characteristics (beliefs, identity and actions) of the interacting partners affect the outcomes of one or both individuals. 20 We argue that the experience of CMR, MetS and related diseases and SMI is a dyadic phenomenon. The management of illness has consequences for the dyad and can lead to enhanced closeness as well as dissonance in the relationship and inevitably shapes both individual and collective identity and joint experiences of illness. Although less well explored, self-regulation in research on dyads or carers 23 explicates the processes by which individuals become aware and respond to health threats. 24 We propose that CMR, MetS and related diseases and SMI are a shared health threat 25 for both individuals within a dyad. Further, the dyad has collective responsibility and is a key unit for illness management. However, as an interdependent team, relationship-level factors such as communication and relationship quality can affect the ability of the caring dyad to manage illness constructively and collaboratively. Our study explores the challenges to the dyad as a functional social unit from the perspective of both the patient and the carer. In particular, we consider decisions by carers to compromise their own needs, role conflict and symmetry/asymmetry in the provision of care within the dyadic relationship.
This study provides an important element missing from existing understanding: The interaction between dyadic relationships and health outcomes. Our methodological approach lends primacy to understanding the relationship dynamics within the caring dyad as a way of understanding the consequences for illness management. Patients were eligible to take part if they were (i) ≥18 years, (ii) had a psychiatric service diagnosis of an SMI (schizophrenia, bipolar affective disorder, schizoaffective disorder or any other nonorganic psychoses) and (iii) had a confirmed diagnosis of CMR, MetS or related condition (smoking, obesity, overweight, abdominal obesity, lipid abnormalities or specific treatment for lipid abnormalities, hyperglycaemia, prediabetes, type 2 diabetes, hypertension or treatment for hypertension, insulin resistance and MetS).
Informal carers were recruited through the patients participating in the study; patients were asked to nominate a noncare professional (≥18 years) who provided them with a significant amount of support. A study information pack (containing a letter of invitation and participant information sheet) was provided to the patient to give to their nominated carer. The lead researcher checked the eligibility criteria of the participating carers.
After enrolment, each individual was asked to provide informed consent, was reimbursed for out-of-pocket and travel expenses and was offered a £10 gift voucher as recognition for study participation.
All participants with CMR, MetS and related diseases and SMI recruited to the study referred to themselves as patients; therefore, we adopt this term. Before the interview, demographic and clinical data were collected.

| Data collection
Semi-structured telephone interviews 26 Table 1-all information is reported verbatim. Identifiable information was changed to ensure anonymity. Participants were located in their own homes and on their own at the time the interview took place.

| Data analysis
Interviews were expected to last from 45 to 60 min (Appendix 1).
The actual interview times ranged from 24 to 94 min, were audiorecorded and transcribed verbatim. The lead researcher listened to each recording twice whilst simultaneously reading the transcripts.
Transcripts were uploaded into NVivo version 12. 28 Analysis was carried out with and without NVivo using thematic analysis (TA). 29 T A B L E 1 Key characteristics of dyads (please note that all information is self-reported verbatim) Note: P is a patient with cardiometabolic risk, metabolic syndrome or related diseases and severe mental illness; C is an informal carer of P.
All information is self-reported verbatim.

SUD ET AL.
| 1823 TA uses both inductive and deductive reasoning to analyse data. 30 Framework analysis, a type of codebook approach, 30 was considered a better choice than the reflexive TA approach as it emphasises both a priori issues and themes identified from the data to guide the development of the analytical framework. This approach suited the aims of this study in that there were predefined areas for exploration but also a need to be open to discover the unexpected. Framework analysis has five main stages. [31][32][33] The lead researcher (D. S.) carried out the data analysis by comparing and contrasting the transcripts of each individual within dyads 34 to discern similarities and differences and identify patterned meanings. [34][35][36] A reflexive journal and field note diary were also used to inform analysis. Regular discussion with co-authors took place throughout the analysis.  Well, it just makes you feel a bit down and, you know, a bit told off. You know these things but you know she's doing it out of concern, because she's con-cerned…Being told off about it too much stops me from doing things. (P1)

| Balance within the caring dyad
What each individual within the caring dyad wanted for themselves, as an individual, was different from how they framed their needs within the context of the dyad. Many carers had their own health needs, but explicitly conceptualised their identity as someone caring for another rather than someone with a long-term health condition.
For some carers, the dyad created an opportunity to redefine their identity but also to negotiate greater symmetry within the relationship. Being a 'partner' in care moderated a focus on their own This is consistent with previous research on a programme to increase social support for healthy eating and exercise that reported benefits to relationship quality. 37 Dyads in our research attributed the improvements to spending more time together and learning more about each other's experiences and perspectives. These results are also supported by the theory of dyadic illness management; dyads with a better relationship quality may be better equipped to work together to manage health behaviours. 38 Our findings also show that taking part in mundane tasks contributes to well-being but also to a sense of agency for the patient and their informal carer. The nature of the support for carers needs to consider the management of tensions (e.g., bullying) within dyads. Support for the informal carer will, in part, be about helping them manage not to bully and recognise that their caring role can lead to compromising their own healthcare needs.
Focusing on the informal carer has the potential to facilitate a greater longevity in their role. Viewing the dyad, rather than the individual patient as the object of formal care, recognises that a key target of an intervention should not be the patient and their needs but also the carer and their needs. Focusing on the dyad allows us to better articulate treatment regimens that have the potential to facilitate improved outcomes for both the informal carer and the patient.
Given the substantial and valued contribution that informal carers make to patient outcomes and the negative impact on their own health, 17,18,39,40 offering support to informal carers in SMI has been included in several treatment publications. 41 However, recognition of the importance of the interdependent relationship between patients and informal carers and the overlap between their caring needs as a dyad is absent.

| IMPLICATIONS FOR RESEARCH
Patient outcomes need to be understood in terms of the caring dyad as they play a significant role in mediating, mitigating and supporting treatment. Future research should consider the dyad as a way of understanding how people with long-term conditions engage with healthcare and learn to live with their condition.
Research focusing on compliance and recovery, for instance, could usefully consider the part played by informal carers in facilitating or limiting such processes. Ensuring that the informal carer is conceptualised as an active agent within the caring and curing process would more fully recognise this essential element of the lives of most people with mental illness and long-term conditions.
In addition, evidence presented here also demonstrates that informal carers place primacy on mental health over physical health that reinforces clinical practice. Long-term illness management is a challenge for healthcare systems that are mainly organised to deal with acute episodic care, rather than long-term conditions. [42][43][44][45] Such considerations also echo behavioural interventions that focus on learning to live with illness rather than surviving it. 46  We did not collect any data about the severity or duration of mental or physical illness or medication use, which might have a consequence on the way dyads functioned.
All demographic and health information was reported verbatim; it is possible that these data may lack accuracy. A number of studies have found no consistent relationship between self-report accuracy and demographic factors, such as gender, age and health status. 47 Older age is the only factor that has been identified to be significantly associated with a lack of accuracy and under-reporting of healthcare utilisation. 47 All interviews were conducted by telephone and we acknowledge the absence of communication that face-to-face interviews provides. Our interview method may have limited rapport between the researcher and the participant. However, studies suggest that the quality of data collected from face-to-face and telephone interviews may be comparable. 26 Interviewing vulnerable individuals such as patients with SMI can be seen as challenging; careful planning can maximise the opportunities to gather in-depth qualitative information. 48 As recommended in the literature, 48

| CONCLUSIONS
This study establishes the importance of caring dyads as an analytical tool to better reveal the experience of illness than simply looking separately at patients with long-term conditions and informal carers.
Analysing the dyad as a unit, using separate interviews, enriches the perception of both the phenomenon and the shared experience of the phenomenon under study. This method of analysis holds much promise for deepening and broadening knowledge of the experience and management of illness.
Unique to this analytical approach is comparing and contrasting individual accounts of illness with the dyad. The dyadic view led to the generation of unique themes and subthemes that would otherwise not have been visible. In particular, we demonstrate that the shared experience of a phenomenon generates similar and contrasting experiences that impact on the management of illness and living with a complex medical condition.
• Consent to participate and approval to audio record the interview.
• Confidentiality, anonymity of interview data and right to withdraw at any time.
• Collection of basic demographic data and clinical data using the form at the end of this topic guide.
(2) Questions • Introduction (Note: The aim here is to get an idea of the person behind the story. Focus on the 'now'-their current life. Also, to ease the person into the interview. Ask prompting questions to suit the person). -Tell me about a time when the pharmacist has helped or given you advice about your physical health/well-being.
-What help or support would you like your pharmacist/ pharmacy to provide?
-What kind of relationship would you say you have with your pharmacist/pharmacy team?
• Potential barriers -What things get in the way of you developing/improving your physical health/well-being?
-How do you think these might be overcome?
-What do you think might get in the way of pharmacy/ pharmacists supporting your physical health?
-How do you think these might be overcome?
• Facilitators/enablers -What things help you to develop/improve your physical health/well-being?
-How do they help you?
-What would you like to make it easier to for you to do things for your physical health/well-being?
-What would make it easier for you to get support from your pharmacy/pharmacist?
-What would make it easier for pharmacies/pharmacist give you support for your physical health? •

Conclusions
-Are there any other things you would like to add to these discussions?
-Thanks for taking part in this study and for your time.

____________________________________
Please note that this document is for the Lead Researcher and their research team only and will not be given to the participants. | 1831 • Overview of research and purpose.
• Approximate duration of the interview is 45-60 min.
• Proposed structure of interview-interested in what is important to them; no right or wrong answers, it is their perspective that we are interested in.
• Consent to participate and approval to audio record the interview.
• Confidentiality, anonymity of interview data and right to withdraw at any time.
• Collection of basic demographic data -Tell me about the care they are getting for their physical health issue (used named example).
-What things help the physical health of the person you care for? What things don't help?
• Role of the pharmacist or pharmacy (Explore both community and hospital pharmacy/pharmacist in relation to the person they care for) -How often to do you visit a pharmacy or speak to a member of the pharmacy team?
-What are the main reasons for visiting the pharmacy/ speaking to the pharmacist?
-Does your/the pharmacy/pharmacist help you with the medicines of the person you care for?
-Does your/the pharmacy/pharmacist support their physical health/well-being? Are any of these for health promotion or risk reduction (name example as appropriate e.g., diet, smoking cessation)?
-Tell me about a time when the pharmacist has helped or given you advice about the physical health/well-being of the person you care for.
-What help or support would you like the pharmacist/ pharmacy to provide?
-What kind of relationship would you say you have with your pharmacist/pharmacy team?
• Potential barriers -What things get in the way of the person you care for developing/improving their physical health/well-being?
-How do you think these might be overcome?
-What do you think might get in the way of pharmacy/ pharmacists supporting the physical health of the person you care for?
-How do you think these might be overcome?
• Facilitators/enablers -What things help develop/improve the physical health/ well-being of the person you care for?
-How do they help?
-What would you like to make it easier for the person you care for to do things for their physical health/well-being?
-What would make it easier for the person you care for get support from the pharmacy/pharmacist?
-What would make it easier for pharmacies/pharmacist give the person you care for support for their physical health? •

Conclusions
-Are there any other things you would like to add to these discussions?
-Thanks for taking part in this study and for your time.

____________________________________
Please note that this document is for the Lead Researcher and their research team only and will not be given to the participants.