{
  "abstract": "Objectives This study sought to explore decision making among caregivers of children with cancer in Pakistan, one of the largest lower middle-income countries in the world.Design Cross-sectional survey studySetting This study was conducted in Pakistan at Indus Hospital and Health Network in Karachi and Children’s Hospital of Lahore. Children’s Hospital of Lahore is a public sector hospital, and Indus Hospital has a foundation-based funding structure. Both are larger tertiary care centers. Over 2,500 new patients are seen at these centers annually, this accounts for almost 50% of all children with cancer in PakistanParticipants Eligible participants included bedside caregivers, defined as a parent or family member involved in communication with the medical team, of children with cancer (<19 years of age) diagnosed within the past 8 weeks, with plans to receive chemotherapy, radiation or surgery.Primary and secondary outcome measures Primary outcome measures included caregiver priorities and experiences related to communication including decision-making role, involvement of the paediatric patient and decisional regret.Results Participants included 200 caregivers of children<1–16 years old with a range of cancer diagnoses; 83% were parents and 60.5% were female. Most caregivers shared (46.5%) or completely deferred (43.5%) cancer-related decision making to other family members. Of the 10% of respondents primarily responsible for decisions related to their child’s cancer, 70% were male. While 68% of caregivers preferred shared decision making with the child’s oncologist, only 65% experienced decision making in the role they preferred. Caregivers expressed a range of preferences regarding child involvement; however, 70% said nobody talked to their child about cancer. Few caregivers (17%) endorsed regret.Conclusions Findings from this study highlight the importance of exploring preferences for decision making and empowering bedside caregivers while respecting cultural norms. In the Pakistani context, it may be specifically important to consider gender roles and the inclusion of extended family members. Future work should investigate paediatric patient involvement in diverse settings.",
  "authors": [
    {
      "affiliations": [
        "St Jude Children’s Research Hospital, Memphis, Tennessee, USA"
      ],
      "name": "Dylan Graetz"
    },
    {
      "affiliations": [
        "St Jude Children’s Research Hospital, Memphis, Tennessee, USA"
      ],
      "name": "Joseph Wardell"
    },
    {
      "affiliations": [
        "Children’s Hospital Lahore, Lahore, Pakistan"
      ],
      "name": "Ambreen Hameed"
    },
    {
      "affiliations": [
        "Oncology, Indus Health Network, Karachi, Sindh, Pakistan"
      ],
      "name": "Afia Tul Quanita"
    },
    {
      "affiliations": [
        "Indus Hospital and Health Network, Karachi, Sindh, Pakistan"
      ],
      "name": "Atoofa Najmi"
    },
    {
      "affiliations": [
        "Children’s Hospital Lahore, Lahore, Pakistan"
      ],
      "name": "Safwan Ahmad"
    },
    {
      "affiliations": [
        "Children’s Hospital Lahore, Lahore, Pakistan"
      ],
      "name": "Muhammad Shafiq"
    },
    {
      "affiliations": [
        "Pediatric Medicine, Indus Hospital and Health Network, Karachi, Pakistan"
      ],
      "name": "Asma Naheed"
    },
    {
      "affiliations": [
        "Indus Hospital and Health Network, Karachi, Sindh, Pakistan"
      ],
      "name": "Shabnam Munir"
    },
    {
      "affiliations": [
        "St Jude Children’s Research Hospital, Memphis, Tennessee, USA"
      ],
      "name": "Gia Ferrara"
    },
    {
      "affiliations": [
        "St Jude Children’s Research Hospital, Memphis, Tennessee, USA"
      ],
      "name": "Courtney Staples"
    },
    {
      "affiliations": [
        "St Jude Children’s Research Hospital, Memphis, Tennessee, USA"
      ],
      "name": "Yichen Chen"
    },
    {
      "affiliations": [
        "St Jude Children’s Research Hospital, Memphis, Tennessee, USA"
      ],
      "name": "Meenakshi Devidas"
    },
    {
      "affiliations": [
        "St Jude Children’s Research Hospital, Memphis, Tennessee, USA"
      ],
      "name": "C Rodriguez-Galindo"
    },
    {
      "affiliations": [
        "St Jude Children’s Research Hospital, Memphis, Tennessee, USA"
      ],
      "name": "Sima Jeha"
    },
    {
      "affiliations": [
        "Dana-Farber Cancer Institute, Boston, Massachusetts, USA"
      ],
      "name": "Jennifer Mack"
    },
    {
      "affiliations": [
        "Indus Hospital and Health Network, Karachi, Sindh, Pakistan"
      ],
      "name": "Syed Ahmer Hamid"
    },
    {
      "affiliations": [
        "Indus Hospital and Health Network, Karachi, Sindh, Pakistan"
      ],
      "name": "Muhammad Rafie Raza"
    },
    {
      "affiliations": [
        "Children's Hospital Lahore, Lahore, Pakistan"
      ],
      "name": "Alia Ahmad"
    }
  ],
  "title": "Whom to include? A cross-sectional survey study investigating how culture impacts diagnostic decision making for paediatric cancer in Pakistan",
  "uid": "9c58a6e8-21b5-5f46-b9ba-5dd9c7a2687e"
}