{
  "abstract": "Background Health expenditures push 55 million Indians below the poverty line annually. A significant portion of this expenditure, may occur from potentially unnecessary medical interventions at the end of life and can be prevented through Advance Care Planning (ACP). Since steps for ACP were clarified in India only in 2023, awareness remains limited. This study aimed to assess the community’s need for ACP and develop educational materials (EM) to raise awareness and guide individuals in creating an Advance Medical Directive (AMD).Methods A survey was conducted in a population of 43,000 in an urban slum in Delhi, India to identify individuals with life-limiting illnesses (LLI). These individuals were prioritized for advance care planning due to their high risk of hospitalization and unnecessary medical interventions, following which a trained researcher provided one-on-one counselling to explain ACP and AMD. Afterward, patients’ and caregivers’ needs for creating an AMD were assessed. EM was built after a literature review and expert consultations by an illustrator with a background in emergency care and public health. Experts from palliative care, intensive care, law, patient advocacy groups, and public health backgrounds were approached to validate the EM using the Patient Education Materials Assessment Tool (PEMAT).Results Ninety individuals with LLI were identified, with all patients and nearly all caregivers unaware of ACP. Of the patients, 67.78% expressed interest in creating an AMD, 24.44% were unsure, and 7.78% declined. A 20-page flipbook was developed in three iterations, covering: (i) the importance of ACP, (ii) reflecting on personal values and treatment preferences, (iii) appointing a healthcare power of attorney, including guidance on choosing a suitable proxy, (iv) understanding various life-support treatment options, (v) communicating wishes with family and providers, and (vi) regularly updating the directive. The flipbook was found to have high understandability (95%) and actionability (100%) scores in expert validation (n=10).Implication and Unique Contribution This is India’s first study highlighting the need for ACP in the community. It led to the development of the country’s first socio-culturally relevant ACP EM. It found low awareness of ACP and AMD in urban poor communities, but high demand for both after explanation. Our future studies will focus on translating the flipbook into five regional languages and evaluating its impact.",
  "authors": [
    {
      "affiliations": [
        "P.D. Hinduja Hospital and Medical Research Centre, Mumbai, India"
      ],
      "name": "Smriti Khanna"
    },
    {
      "affiliations": [
        "Maulana Azad Medical College, New Delhi, India",
        "Association for Socially Applicable Research (ASAR), Pune, India"
      ],
      "name": "Parth Sharma"
    },
    {
      "affiliations": [
        "Nivarana, New Delhi, India",
        "Forum for Equity in Health (FEH), Sittilingi, India",
        "Society for Community Health Awareness, Research and Action (SOCHARA), Bangalore, India",
        "AID Community Health Program, Chennai, India"
      ],
      "name": "Gayatri Sharma"
    },
    {
      "affiliations": [
        "Maulana Azad Medical College, New Delhi, India",
        "Association for Socially Applicable Research (ASAR), Pune, India"
      ],
      "name": "KJ Akshithanand"
    },
    {
      "affiliations": [
        "Pallium India, Trivandrum, India"
      ],
      "name": "Smriti Rana"
    },
    {
      "affiliations": [
        "Vidhi Center for Legal Policy, New Delhi, India"
      ],
      "name": "Dhvani Mehta"
    },
    {
      "affiliations": [
        "Border Security Force, Agartala, India"
      ],
      "name": "Savita Butola"
    },
    {
      "affiliations": [
        "P.D. Hinduja Hospital and Medical Research Centre, Mumbai, India"
      ],
      "name": "Roop Gursahani"
    }
  ],
  "title": "71 Development of advance care planning educational material following community-based need assessment in India",
  "uid": "357ab3b6-1993-5489-9d93-49730d28819f"
}