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PERSPECTIVE
Year : 2020  |  Volume : 68  |  Issue : 13  |  Page : 128-130

Establishing support groups to support parents of preterm babies with retinopathy of prematurity: A pilot study


1 India ROP Partners Implementation Consortium (ROP Project Team) Located at Indian Institute of Public Health, Hyderabad, India
2 India ROP Partners Implementation Consortium (ROP Project Team) Located at Indian Institute of Public Health, Hyderabad, India; International Centre for Eye Health Located at London School of Hygiene & Tropical Medicine (LSHTM) , London, UK
3 International Centre for Eye Health Located at London School of Hygiene & Tropical Medicine (LSHTM), London, UK

Correspondence Address:
Dr. Rajan Shukla
Indian Institute of Public Health Hyderabad, Plot # 1, A N V Arcade, Amar Co-operative Society, Kavuri Hills, Madhapur, Hyderabad - 500 033, Telangana
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/ijo.IJO_1818_19

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India has the highest number of preterm births in the world, which along with low birth weight, are significant risk factors for retinopathy of prematurity (ROP). One of the challenges in combating visual loss from ROP is the lack of information and awareness among parents of preterm babies. The objective of establishing ROP parent support groups was to support parents of children with ROP by counseling, information and resource sharing, and general guidance. As part of a major initiative to combat ROP across four states in India, a strategy to develop parent support groups was developed and a pilot project was implemented in three cities. In collaboration with identified eye institutes, five ROP parent support group sessions were conducted in these cities. The concept is still in its initial stages of implementation and data are not yet available on the impact of the support groups. However, the overall turnout for the meetings was low as only 30% of parents invited attended meetings. Initial learning and experiences suggest that parent support groups could have a significant role to play in providing many benefits especially in improving awareness, knowledge, and compliance, alleviating anxiety, and empowering parents.


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