Proxy consultations for severe mental illnesses: An exploratory cross-sectional study from a tertiary care hospital

Abstract

Background:

Non-adherence to medication leading to a break in continuity of care poses significant challenges in severe mental illness (SMI), leading to poor outcomes. In India, proxy consultation, wherein caregivers consult on behalf of patients, is a commonly adopted but insufficiently researched area to address these challenges.

Aims:

To explore the extent of proxy consultation in outpatient care of persons with SMI and investigate its sociodemographic and clinical correlates.

Methodology:

In a tertiary care psychiatry outpatient setting, we conducted a cross-sectional study involving 374 caregivers of persons with SMI (Schizophrenia, Bipolar and related disorders). Descriptive statistics and univariate logistic regression were performed to examine correlates’ relationships with proxy consultation.

Results:

Proxy consultation prevalence was 43% in the past 1 year. Compared with 18 to 30 years, middle-aged patients aged 31 to 40, 41 to 50 and 51 to 60 years had twofold, threefold and sixfold increased chances of proxy consultation, respectively. Being illiterate had six times higher odds than graduates, three times and two times if they studied till primary and secondary education. Early age of onset was associated with three times higher chances of proxy consultation compared to the onset of illness in adulthood. On the contrary, male gender and upper and middle socioeconomic status decreased the chances of proxy consultation by 40%. Financial difficulties (n = 72, 45%) and patients’ unwillingness to visit outpatients (n = 44, 27.5%) were the most commonly cited reasons for proxy consultation.

Conclusion:

Proxy consultations are relatively common, driven by many social, economic, patient-related, pragmatic and practical factors. In formulating community care policies for persons with SMI, the primary imperative should be to conduct additional research, deepening our understanding of proxy consultations. Additionally, it is essential to be mindful of the diverse issues associated with proxy consultations during the formulation process.

Keywords

Proxy caregivers medication adherence continuity of patient care community mental health services outpatients

Introduction

In persons with severe mental illness (SMI) such as Schizophrenia, Bipolar and related disorders, poor outcomes often stem from non-adherence to medication and a lack of continuity in care (Mathers & Loncar, 2006; Semahegn et al., 2020). Across the world, non-adherence rates in severe mental illness vary widely, ranging from 20% to 80% (Breen & Thornhill, 1998; Lingam & Scott, 2002). Many countries utilize legal and community-based strategies, such as Assertive Community Treatment (ACT), Community Treatment Order (CTO), intense case management and crisis management, to enhance outcomes and mitigate non-adherence (Bond & Drake, 2015; Udechuku et al., 2005). However, no established legal or community measures exist in low- and middle-income countries (LAMI), such as India. Non-adherence to treatment can lead to severe disturbances, including violence, suicide and increased hospitalization, contributing significantly to the caregiver burden (Novick et al., 2010; Witt et al., 2013). This burden is further amplified for caregivers balancing caregiving with other obligations (Health, 2024). Research demonstrates a correlation between increased caregiving hours and higher psychological distress, particularly among young adults (Ademosu et al., 2021; Alfonzo et al., 2024). These challenges can negatively impact caregiver well-being and potentially compromise the quality of care provided to SMI patients. In this context, proxy consultations have emerged as a potential strategy to address these challenges. Proxy consultations involve a designated caregiver attending outpatient appointments on behalf of the absent patient. Based on clinical experience, this care model appears prevalent in India, particularly within Mental Health Institutes. It often involves patients who have previously attended in-person consultations with a psychiatrist but subsequently failed to attend follow-up appointments. During these proxy consultations, caregivers seek guidance on patient care and receive medication prescriptions.

In India, the lack of established legal or community measures contributes to the prevalence of proxy consultations, and various justifiable circumstances accentuate this trend. For employed individuals dealing with severe mental illness, attending in-person consultations may result in the loss of a day’s wages, serving as a significant impediment to regular follow-up appointments (Sarma, 2000). Similarly, single women or homemakers, constrained by social restrictions in travelling alone, may find proxy consultations a pragmatic solution to ensure continuous care for their loved ones with SMI. Additionally, older adults facing mobility issues may encounter challenges reaching mental health facilities (Garrido et al., 2011), making proxy consultations an essential avenue for their engagement in the care process. The decision to opt for proxy consultations is also influenced by the stigma associated with psychiatric illnesses in India (Venkatesh et al., 2015). Individuals with negative experiences or concerns about societal stigma may be hesitant to attend psychiatric hospitals in person, fearing labels and discrimination.

Despite the apparent widespread adoption of proxy consultations, there is almost no empirical research in the area. This explorative cross-sectional study was conducted in a tertiary care psychiatry outpatient setting to elucidate the extent, demographic and clinical correlates and reasons for proxy consultations among patients with severe mental illness.

Materials and methods

Methodology

This cross-sectional exploratory study was conducted at a tertiary neuro-psychiatry teaching institute in South India, building upon a prior investigation focussed on covert medication involving 300 patients. Detailed information on the selection and interview procedure for the covert medication is published elsewhere (Hegde et al., 2023). Below, we summarize the methodology used in the previous study. Participants in this current study were caregivers of persons with SMI, such as schizophrenia and bipolar disorder, attending the outpatient department at the institute. To ensure a robust sample size, an additional 74 patients were included, resulting in a total of 374 participants. A previous Indian study on non-adherence, which reported a 43% prevalence rate, derived this minimum sample size (Lucca et al., 2015). Given the lack of prior research on proxy consultation in both Indian and global contexts and its significant association with continuity of care, this sample size was deemed appropriate for a comprehensive exploration of proxy consultation. Screening involved 1,520 persons with mental illnesses and their caregivers, with details of the study sample selection summarized in Figure 1. Data were collected through face-to-face interviews with caregivers using a semi-structured proforma designed to capture patients’ and caregivers’ sociodemographic and clinical variables. The questionnaires included circumstances when caregivers adopted proxy consultations. We retrieved the number of proxy consultations in the past year from the medical records in addition to the interviews with caregivers. The section on clinical variables collected details such as medication adherence (Subotnik et al., 2011), the number of relapses and the frequency of hospitalization.

Figure 1.

Selection of study sample.

Ethical considerations

After obtaining informed consent from caregivers, we conducted interviews. If patients were present and accompanied the caregiver, we also sought their consent for the caregiver’s interview. The study was approved by the Institutional Ethical Committee (IEC) (No. NIMH/DO/IEC (BEH. Sc DIV)/2018 dated 14/11/2018). An extension for 6 months to include an additional 74 patients was approved by the IEC (No. NIMHANS/IEC/2023 dated 13/06/2023).

Statistical methods

Kolmogorov-Smirnov test was used to test normality. We presented continuous variables with mean and standard deviation or median and interquartile range (IQR) as applicable. We reported categorical variables using frequency and percentage. To explore the significant association between proxy consultation with sociodemographic and clinical variables, we categorized the variables into groups of comparable size. Univariate logistic regression investigated the associations between clinical variables and proxy consultation. The results were considered statistically significant at alpha <.05 in all analyses. We conducted the statistical analysis using IBM SPSS Statistics 29.0 (Release Notes, 2022).

Results

The demographic details of patients and their caregivers

The patients had a mean age of 40.6 (±11.7) years. The majority of patients were married (56.4%), belonged to nuclear families (64.4%) and were from a lower economic status (74.6%). Over two-thirds of patients were employed (31.3%) or homemakers (32.6%).

Most caregivers were male (64.2%), married (80.5%) and had a mean of 8 (±5.3) years of schooling. Parents and Spouses made up 30.7% and 29.7 % of the caregivers, followed by children(16.3%), siblings(13.1%) and others(10.2%). Table 1 presents a detailed summary of the sociodemographic characteristics of both patients and caregivers.

Table 1.

Patient and caregiver characteristics.

Sociodemographic characteristics	Patients	Caregivers
Sociodemographic characteristics	N (%)	N (%)
Gender
Male	159 (42.5)	240 (64.2)
Female	215 (57.5)	134 (35.8)
Age group (years)
18–30	88(23.5)	79 (21.1)
31–40	95(25.4)	79 (21.1)
41–50	111(29.7)	90 (24.1)
50–60	80(21.4)	78(20.9)
>60	–	48(12.8)
Education
Illiterate	113 (30.2)	86 (23.0)
Primary (7th)	79 (21.1)	70 (18.7)
Secondary (12th)	132 (35.3)	151 (40.4)
Graduate and above	50 (13.4)	67 (17.9)
Marital status of patients
Never married	107 (28.6)	49 (13.1)
Married	211 (56.4)	301 (80.5)
Separated/divorced/widower	56 (15.0)	24 (6.4)
Relationship of caregiver with the patient
Parents		115 (30.7)
Spouse		111 (29.7)
Children		61 (16.3)
Siblings		49 (13.1)
Others		38 (10.2)
Current employment status of patients
Employed	117 (31.3)
Unemployed after the illness	90 (24.0)
Never employed	29 ( 7.8)
Student	13 ( 3.5)
Housewife	122 (32.6)
Retired	3 (0.8)
Type of families
Nuclear	241 (64.4)
Extended family	65 (17.4)
Joint family	68 (18.2)
Socioeconomic status of families
Upper and middle	95 (25.4)
Lower	279 (74.6)

The clinical characteristics of the patients

The mean age of onset for the primary psychiatric disorder and treatment initiation was 27.5 (±9.3) and 28.4 (±9.8) years, respectively. Schizophrenia and related psychotic disorders were the most common diagnosis (55.6%), followed by Bipolar affective disorder (44.4%). %). Regarding relapses throughout the illness course, 20.4% had none, 68.7% experienced one to four and 10% had more than four. Some patients had a history of more than two admissions (10%), while 37.7% had one or two admissions during the entire duration of the illness. Table 2 summarizes the clinical characteristics of the patients.

Table 2.

Clinical characteristics.

Clinical characteristics		N (%)
Primary Psychiatry diagnosis (n (%))	Schizophrenia and related psychotic disorders include (Schizoaffective disorder)	208 (55.6)
Primary Psychiatry diagnosis (n (%))	Bipolar affective disorder and related affective disorder (Includes Severe depression with psychotic symptoms)	166 (44.4)
Age of onset of primary psychiatric illness (M (SD))		27.4 (9.3)
Age at first treatment sought (M (SD))		28.4 ( 9.8)
Duration of illness in years (M (SD))		12.6 (8.9)
Number of relapses during the entire course of illness	0	80 (21.4)
	1–2	146 (39.0)
	3–4	111 (29.7)
	⩾5	37 (9.9)
Number of hospitalizations during the entire course of illness	0	196 (52.4)
	1 or 2	141 (37.7)
	>2	37 (9.9)
Adherence to treatment	Best adherence (adherent for more than 75% of the follow-up period)	260 (69.5)
	Moderate adherence (adherent between 50% and 75% of the follow-up period)	86 (23.0)
	Worst Adherence(adherent for less than 50% of the follow-up period)	28 (7.5)

Proxy consultation characteristics

In Table 2, we present the results related to proxy consultations. Approximately 160 (42.7%) caregivers practised proxy consultation on behalf of the patient in the last year. Among them, 52(32.5%) caregivers sought four proxy outpatient consultations in the past year, while 29(18.1%) had consulted only once. The proxies had the following relationships: 33.8% (n = 54) were spouses, 23.8% (n = 38) were parents, 18.1% (n = 29) were children, 11.8% (n = 19) were siblings and 12.5% (n = 20) as others. Most of the proxies stayed with the patient (n = 132, 82.5%), while 17.5% (n = 28) stated that proxies do not stay with the patient. All proxies, accounting for 100%, reported receiving proxy prescriptions during proxy consultation.

The reasons for proxy consultation varied, with 27.5% (n = 44) citing the patient’s unwillingness to come for consultation, 45% (n = 72) indicating costs as a factor, 7.5% (n = 12) specifying locomotor difficulties or being elderly, 12.5% (n = 20) stating that the patient was doing well and did not come regularly. Another 1.3% (n = 2) mentioned that the patient received medication covertly.

Figure 2 presents the caregiver’s perspective on the proxy, reflecting the views of all caregivers. Over 41% opined that the decision should be left to the family, while another 40% opined that it should be made in discussion with the doctors (Table 3).

Figure 2.

Caregiver opinions on proxy consultation.

Table 3.

Proxy consultation characteristics.

Proxy consultation characteristics	N (%)
Number of times in the last 1 year
One	29 (18.1)
Two	36 (22.5)
Three	43 (26.9)
Four or more	52 (32.5)
Do proxies stay with the patient?
Yes	132 (82.5)
No	28 (17.5)
Do proxies get the proxy prescription?
Yes	160 (100)
No	0 ( 0.0)
Reason for proxy consultation^†
The patient is receiving medication covertly	2 (1.3)
The patient is unwilling to come for a consultation	44 (27.5)
To mitigate the financial costs of accommodating one more person and to save on daily wages	72 (45.0)
The patient is doing well, so he/she does not come regularly	20 (12.5)
Locomotor difficulty	12 (7.5)
Other reason^a	55 (34.4)

Note. Proxy consultation: Outpatient appointments by a caregiver on behalf of a patient.

Covert medication: Giving medication disguised in food or drinks.

†

Caregivers can choose more than one reason for proxy consultation.

Other reasons: Elderly patients, on doctors’ advice, poor physical health including neurological conditions, emergencies or crises, cultural or societal barriers.

Association between Sociodemographic and Clinical Characteristics to Proxy Consultations

We compared patients who had at least one proxy consultation in the past year with those who had no proxy consultations during the same period. Male patients were 40% less likely to undergo proxy consultation than female patients. Compared with 18 to 30 years, patients belonging to the middle-aged working age patients of 31 to 40, 41 to 50 and 51 to 60 years had twofold, threefold and sixfold increased chances of proxy consultation. Middle and upper-socioeconomic patients were 40% less at risk of proxy consultation than lower-socioeconomic patients. Lower level educations were significantly associated with the occurrence of proxy consultation. Being illiterate had six times higher odds than graduates, and the odds were three times and two times if they studied till primary and secondary education, respectively.

In the analysis of clinical variables, the likelihood of having a proxy consultation was twice for patients with three to four relapses and four times for those with more than four relapses, compared to those with no relapse. However, when we compare those with no relapses with all those who have at least one relapse, it is not statistically significant. We found no statistically significant associations between the number of hospitalizations and the level of adherence. The primary diagnosis of being either primary psychotic disorder or mood disorder showed no association with proxy consultation. Compared with the early onset of illness (less than 18 years), the age of onset of illness in adulthood (18–45 years) was at three times higher odds of having proxy consultation. However, this association was not significant during sub-analysis, when we analysed the age of onset based on the primary psychiatry diagnosis. Details are given in Table 4.

Table 4.

Sociodemographic and clinical characteristics associated with proxy consultation.

Variables in proxy^a	The practice of proxy consultation at least once in the last year (n (%))		OR	95% CI for OR		p value
Variables in proxy^a	Present (Group A) N = 160	Absent (Group B) N = 214	OR	Lower	Upper	p value
Gender
Female (ref)	103 (64.4)	102 (47.7)	–
Male	57 (35.6)	112 (52.3)	0.61	0.40	0.9	.02
Age categories
18–30 (ref)	19 (11.9)	69 (32.2)	–
31–40	37 (23.1)	58 (27.1)	2.32	1.20	4.46	.01
41–50	53 (33.1)	58 (27.1)	3.32	1.77	6.23	<.01
51–60	51 (31.9)	29 (13.6)	6.39	3.23	12.64	<.01
Education
Illiterate	68 (42.5)	45 (21.0)	6.04	2.74	13.30	<.01
Primary school	32 (20.0)	47 (22.0)	2.72	1.19	6.22	.02
High school	50 (31.3)	82 (38.3)	2.44	1.12	5.31	.03
Graduate and above (ref)	10 (6.3)	40 (18.7)	–
Socioeconomic status
Middle and upper	32 (20)	63 (29.4)	0.60	0.37	0.97	.04
Lower (ref)	128 (80)	151 (70.6)	–
Primary psychiatric diagnosis
Schizophrenia and related disorders (ref)	92 (57.5)	116 (54.2)	–
Bipolar affective disorder	68 (42.5)	98 (45.8)	0.88	0.58	1.32	.53
Age of onset of primary psychiatric condition
<18 (ref)	8 (5.0)	29 (08.9)	–
18–30	106 (66.3)	122 (57.0)	3.15	1.38	7.19	<.01
31–45	38 (23.8)	53 (24.8)	2.60	1.07	6.31	.04
>45	08 (5.0)	10 (4.7)	2.9	0.86	9.7	.08
Number of hospitalizations^a
0 (ref)	81 (50.6)	115 (53.7)	–
1–2	60 (37.5)	81 (37.9)	1.05	0.68	1.63	.82
>2	19 (11.9)	18 (8.4)	1.50	0.74	3.03	.26
Number of relapses^a
0 (ref)	27 (16.9)	53 (24.8)	–
1–2	54 (33.8)	92 (43.0)	1.15	0.65	2.04	.63
3–4	55 (34.4)	56 (26.2)	1.93	1.06	3.50	.03
>4	24 (15.0)	13 (06.1)	3.62	1.60	8.22	<.01
Number of relapses^a
0 (ref)	27 (33.8)	53 (66.3)	–
1 or more	133 (45.2)	161 (54.8)	1.62	0.97	2.72	.07
Adherence to treatment
Best adherence	96 (60.0)	164 (76.6)	0.51	0.23	1.1	.09
Moderate adherence	49 (30.6)	37 (17.3)	1.15	0.49	2.7	.75
Poor adherence (ref)	15 (09.4)	13 (6.1)	–

Note. OR = odds ratio; CI = confidence interval. The bold values are statistically significant at p <.05.

Lifetime during the entire course of illness.

Discussion

The study highlighted a substantial cross-sectional prevalence of proxy consultations at 43% in the past year among persons with SMI in outpatient care. Notably, two-thirds of the patients in this study belonged to the Below Poverty Line (BPL) category, highlighting the economic factors influencing proxy consultation. The BPL scale, designed by the Government of India, identifies patients from backward socioeconomic status (Drèze & Khera, 2010; Recommendations of N.C. Saxena Committee, n.d.). The study setting offered free medication every 3 months for BPL patients, translating to an average of four outpatient visits per year. The four visits in the past year align with the observed frequency of attendance at outpatient appointments in the study.

Interestingly, a distinct subgroup of proxies emerged within the caregiver population. One-third consistently attended all consultations as proxies. The remaining half participated in two to three proxy consultations, potentially for medication refills or consultations requiring their presence. Understanding the characteristics of these proxy groups compared to non-proxy groups is crucial for planning interventions and support systems tailored to SMI patients. The study further revealed a complex interplay between various demographic and clinical factors influencing proxy consultation needs. Specifically, the male gender of the patients and belonging to higher socioeconomic status reduced the likelihood of requiring proxies. Conversely, factors like lower educational attainment, belonging to a higher age group and experiencing more than three relapses were associated with a significantly higher probability of proxy consultation.

The observed prevalence rate of 43% underscores the pervasive nature of proxy consultations, emphasizing the broader socio-cultural and economic factors impacting decision-making in mental health care. This prevalence rate prompts a deeper exploration into the phenomenon, with financial burden emerging as a predominant factor, influencing over two-fifths of cases. At the same time, patient refusal to attend outpatient appointments contributed to one-fourth of instances. For instance, indirect expenses such as travel expenses were identified as a significant portion of outpatient department visit expenditure (Sarma, 2000), aligning with the financial burden identified in the study. Patient refusal, constituting one-fourth of instances, sheds light on the multifaceted nature of the barriers to direct patient engagement, encompassing factors such as stigma, lack of insight and inexperience with the healthcare system (Loch, 2014).

Understanding these underlying motivations and barriers is essential for healthcare providers and policymakers. Factors like long waiting periods, the type and setting of the hospital and the accessibility of free medications for economically disadvantaged patients may contribute to the prevalence of proxy consultation. While the provision of free medication in the public neuropsychiatric facility may motivate caregivers, the lack of comparative studies limits the validation of this hypothesis. Addressing the economic aspects by ensuring medication availability at the periphery or enhancing accessibility through telepsychiatry can alleviate the financial burden. Strategies to combat stigma and increase mental health awareness are crucial in encouraging persons with SMI to engage in outpatient care voluntarily.

Patients experiencing a higher number of relapses tended to have increased proxy consultations, suggesting a potential link between missed opportunities for patient education and heightened relapse rates. Additionally, those with higher relapse rates, often on medication for an extended duration with increased healthcare costs (Weiden & Olfson, 1995), were more likely to opt for proxy consultations. A comprehensive understanding of these associations can significantly influence the formulation of outpatient care strategies.

Unpaid caregivers face significant mental health challenges, especially as they balance caregiving with other responsibilities (Health, 2024). Studies reveal that increased caregiving hours correlate with higher psychological distress, particularly among young adults (Ademosu et al., 2021; Alfonzo et al., 2024). Women, in particular, bear a dual burden of caregiving and potential workplace disadvantages. Understanding caregivers’ perspectives on proxy consultation becomes crucial in light of these challenges. Regarding caregivers’ perspective on proxy consultation, most caregivers prefer family members or doctors making the decisions regarding proxy consultation. Over two in five caregivers chose family members to make decisions, attributing a better understanding of them in making healthcare choices for patients. Concurrently, a similar proportion of caregivers advocate for collaborative decision-making with doctors, relying on their expertise. A smaller group of caregivers believes that proxy consultation should never happen, emphasizing the importance of personal choice in medical decisions in every consultation. Some others underscore the significance of obtaining prior consent, emphasizing the necessity of explicit agreement before a proxy consultation. Policymakers should prioritize the development of support systems that acknowledge caregivers’ social and economic contributions and aim to reduce their burden. These support systems could encompass flexible work arrangements, financial assistance programmes and proactive healthcare identification (Health, 2024). Tailored, culturally sensitive interventions are essential to effectively support caregivers from diverse backgrounds (Rathod et al., 2023). Addressing these burdens enhances caregiver well-being and fosters a more sustainable caregiving system for the future. These nuanced perspectives collectively underscore the diversity in views regarding proxy consultation in healthcare decisions from caregiver perspectives.

Besides the clinical realm, our study highlights some significant ethical concerns about proxy consultation. Even though these practices are usually done with noble intentions to ensure continuity of care, they compromise individual autonomy and confidentiality of treatment details. Healthcare professionals struggle with uncertainties about the patient’s clinical status and the inability to comprehensively assess for dose modification and titration. There are also ethical concerns about covert medication, the risk of diversion or misuse of prescribed medications and the potential for adverse effects going unnoticed. Notably, The Mental Health Care Act (MHCA) 2017 lacks explicit mention of proxy consultation or covert medication, and the interpretation of its provisions may be perceived as a potential barrier.

To address these challenges, we propose specific recommendations in line with contemporary developments in mental healthcare in India:

Ensuring medication availability in peripheral healthcare settings, as advocated under the Rights of Persons with Mental Illness of MHCA 2017 (Section 18), can mitigate the need for frequent proxy consultations. (Math et al., 2019) However, it is essential to acknowledge that this approach might not eliminate the need for proxy consultation. Some patients may still require assistance with medication adherence, managing side effects or communicating with healthcare providers due to the nature of their illness.

Embracing telepsychiatry consultations as an alternative to in-person visits can enhance accessibility while reducing the need for proxy consultations. By facilitating remote consultations, telepsychiatry can overcome geographical barriers and potentially reduce scheduling conflicts for busy caregivers. However, it is vital to acknowledge limitations. While beneficial for those comfortable with technology, it might not improve engagement for patients seeking to avoid follow-up altogether. Furthermore, it is essential to acknowledge that telepsychiatry might inadvertently exacerbate the isolation of the most severely ill patients, particularly those who lack the financial means or technical proficiency to access such services. The digital divide can also limit access for those needing more technological resources or know-how. Further research is necessary to explore the effectiveness of telepsychiatry interventions for specific populations and develop strategies to bridge the digital gap.

Implementing safeguards such as obtaining preauthorized consent from patients for proxy consultations by nominated representatives, with precise specifications regarding frequency and duration, can protect patient autonomy and treatment confidentiality. However, it is essential to consider how such safeguards might impact situations where patients lack the capacity to provide informed consent or where obtaining consent might create an undue burden.

While this study focussed on proxy consultation within India, its findings hold significance for the wider Southeast Asian region. This region faces a critical treatment gap for mental health concerns, emphasizing the urgent need for cost-effective and culturally appropriate interventions that resonate with local needs (Vijayakumar, 2023). Effectively adapting interventions to specific cultural contexts requires actively involving the local population (Rathod et al., 2023). This participatory approach ensures that the intervention aligns with local values, beliefs and practices through collaboration with community leaders, healthcare professionals and potential service users. Their insights can inform the adaptation process, fostering greater intervention acceptability and effectiveness within the target community.

However, data on proxy consultation practices across Southeast Asia is not available. Despite the region’s shared emphasis on familial ties and filial piety (Kramer et al., 2002; Wang et al., 2023), suggesting a potential openness to proxy consultation, variations are likely. Healthcare access, local norms and legal frameworks for proxy decision-making may differ across countries. This lack of regional data underscores the need for further research to explore the prevalence, practices and ethical considerations surrounding proxy consultation in Southeast Asia.

Furthermore, comparable research on global proxy consultation in mental healthcare remains limited. This dearth of research underscores the uniqueness of our exploration and emphasizes the importance of this study as a foundational step in uncovering the complexities surrounding proxy consultations.

The study has its limitations. It was a single-site, cross-sectional study with retrospective data retrieval, limited scrutiny of cultural variables and limited data retrieval from the patient’s perspective. Nevertheless, it provides invaluable insights into the dynamics of proxy consultations within the framework of severe mental illness care in the Indian context, thereby offering valuable insights for healthcare stakeholders and policymakers to consider and work on.

Conclusion

In conclusion, the study highlights the widespread occurrences of the use of proxy consultations among caregivers of persons with severe mental illnesses. In addition to the need for further research, these aspects should be considered when designing policies for the community care of those with SMIs.

Footnotes

Authors note

The study was presented as a poster presentation at the 21st World Psychiatric Association (WPA) World Congress of Psychiatry in October 2021 with a sample size of 300. In the current study, we have expanded to encompass a sample size of 374 for a more comprehensive interpretation.

Author contribution

All the authors have contributed and approved the final manuscript.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iDs

Prakyath Ravindranath Hegde

Guru S Gowda

Bhavika Vajawat

Narayana Manjunatha

Channaveerachari Naveen Kumar

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