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Critical considerations for engaging in inclusive health research with individuals with intellectual disability

Por: Bobbette · N. · Hamdani · Y.

Commentary on: Schwartz, AE, Kramer, JM, Cohn ES, et al. "That Felt Like Real Engagement": fostering and maintaining inclusive research collaborations with individuals with intellectual disability. Qual Health Res 2019;30:236–49. doi: 10.1177/1049732319869620.

Implications for practice and research

  • Individuals with intellectual disabilities (ID) should be involved in co-producing research and evaluating services related to their health and healthcare.

  • Swartz and colleagues’ conceptual model provides valuable insights into factors that enable inclusive research collaborations with individuals with ID and can be used to inform future inclusive health research.

  • Context

    Including the perspectives of individuals with ID in health research and service evaluation is essential to the delivery of high-quality, person-centred healthcare and research that is accessible and reflective of the needs of this group. Inclusive research (IR) is a collaborative approach for working with people with disabilities.1 Guidelines have been specifically developed to support...

    Cognitive-behavioral therapy-based intervention to treat symptoms of anxiety in pregnancy in a prenatal clinic using non-specialist providers in Pakistan: design of a randomised trial

    Por: Surkan · P. J. · Hamdani · S. U. · Huma · Z.-e. · Nazir · H. · Atif · N. · Rowther · A. A. · Chaudhri · R. · Zafar · S. · Mullany · L. C. · Malik · A. · Rahman · A.
    Introduction

    Prenatal anxiety is a prevalent condition that is harmful for women and a strong predictor of postpartum depression. This trial assesses an intervention initiated in early pregnancy to mid pregnancy among women with clinical or subclinical symptoms of anxiety in Pakistan.

    Methods and analysis

    Happy Mother, Healthy Baby (HMHB) is a phase three, two-arm, single-blind, individual randomised clinical trial conducted in the outpatient department of Holy Family Hospital, a large public tertiary care facility affiliated with Rawalpindi Medical University (RMU). Pregnant women (enrolled at ≤22 weeks of gestation) receive six individual HMHB sessions based on cognitive–behavioral therapy (CBT) and relaxation techniques that are administered by non-specialist providers and tailored to address anxiety symptoms. Two to six booster sessions are given between the fifth consecutive weekly core session and the sixth core session that occurs in the third trimester. Apart from baseline data, data are collected in the third trimester, at birth and at 6-weeks postpartum. Primary outcomes include diagnoses of postpartum common mental disorders. Secondary outcomes include symptoms of anxiety and of depression, and birth outcomes including small-for-gestational age, low birth weight and preterm birth. An economic analysis will determine the cost effectiveness of the intervention.

    Ethics

    Ethics approval was obtained from the Johns Hopkins Bloomberg School of Health Institutional Review Board (Baltimore, USA), the Human Development Research Foundation Ethics Committee (Islamabad, Pakistan), the RMU Institutional Research Forum (Rawalpindi, Pakistan) and the National Institute of Mental Health-appointed Global Mental Health Data Safety and Monitoring Board.

    Dissemination

    Results from this trial will build evidence for the efficacy of a CBT-based intervention for pregnant women delivered by non-specialised providers. Identification of an evidence-based intervention for anxiety starting in early pregnancy to mid pregnancy may be transferable for use and scale-up in other low-income and middle-income countries.

    Trial registration number

    NCT03880032.

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