Unpacking the psychiatric advance directive in low-resource settings: an exploratory qualitative study in Tamil Nadu, India

Abstract

BackgroundPsychiatric advance directives, a tool to document preferences for care in advance of decisional incapacity, have been shown to benefit persons with mental illness in a number of countries through improving medication adherence, reducing symptoms from escalating in a crisis, accelerating recovery, and enhancing service user autonomy. While concepts such as autonomy are important in a number of high-income country settings, it remains unclear whether tools like psychiatric advance directives are suitable in a different context. The recent introduction of the psychiatric advance directive into draft legislation in India prompts the question as to how feasible psychiatric advance directives are in the Indian context. The aim of this study is to explore the feasibility and utility of PADs in India, with a focus on the need for individual control over decision making and barriers to implementation, by exploring views of its central stakeholders, service users and carers.MethodsQualitative semi-structured interviews (n = 51) with clients (n = 39) and carers (n = 12) seeking mental health treatment at outpatient clinics in urban and rural settings provided by a non-profit organisation in Tamil Nadu, India.ResultsClients engaged in a number of forms of decision-making (passive, active, and collaborative) depending on the situation and decision at hand, and had high levels of self-efficacy. Most clients and carers were unfamiliar with PADs, and while some clients felt it is important to have a say in treatment wishes, carers expressed concerns about service user capacity to make decisions. After completing PADs, clients reported an increase in self-efficacy and an increased desire to make decisions.ConclusionsThe introduction of psychiatric advance directives in India appears to be associated with positive outcomes for some service users, however, there is a need to better understand how this tool can be adapted to better suit the care context in India and hold meaning and value for service users to complete.

Systematic synthesis of barriers and facilitators to service user-led care planning

“…An update to our original search was performed in May 2014, which identified a further five papers meeting our inclusion criteria. 134 – 138 Although all were small studies focused on specific clinical populations, 134 , 136 , 138 or on variants of care planning, 135 , 137 their data corroborated our synthesis, highlighting the following ongoing barriers to service user involvement: ritualised practices; 136 , 138 insufficient information provision; 134 , 135 , 138 lack of service user confidence, 138 or competence; 135 and professional scepticism. 137 Effective involvement will aIways depend on the skills and competencies of the parties involved, and it is arguable whether all service users and carers possess the necessary skills and confidence to work collaboratively with mental health professionals.…”

How do Our Patients Respond to the Concept of Psychiatric Advance Directives? An Exploratory Study From India

“…They interviewed 39 clients and 12 caregivers and concluded that introduction of ADs in India might be associated with positive outcome in some users. [ 2 ] Pathare et al . (2015) tried to identify what service users would opt for if they make ADs.…”

Factors influencing advance directives among psychiatric inpatients in India

“…A study from the SCARF foundation shows psychotic patients with a long-term illness were able to make valid PADs irrespective of their education and locality of stay(Kumar et al, 2013). In another 2013 study, patients decided about treatment (passive, active, and collaborative) depending on the situation and decision at hand, and had high levels of self-efficacy(Shields et al, 2013). Another recent study from south India by Pathare and his group investigated service users and their families' opinions about the newLepping et al, 2015).…”