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

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 obj...

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Bibliographic Details
Published in:Indian journal of ophthalmology 2020-02, Vol.68 (Suppl 1), p.S128-S130
Main Authors: Malladi, Bala Vidyadhar S, Iyer, Gowri K, Murthy, G V S, Gilbert, Clare, Shukla, Rajan, Gudlavalleti, Anirudh G, Yamarthi, Pavani, Mukpalkar, Sridivya
Format: Article
Language:English
Subjects:
Awareness
Childhood vision disorders
Female
Follow-Up Studies
Gestational Age
Humans
India - epidemiology
Infant, Newborn
Infant, Premature
Infants
Male
Morbidity - trends
Parents - psychology
Pilot Projects
Premature infants
Retinopathy of prematurity
Retinopathy of Prematurity - diagnosis
Retinopathy of Prematurity - epidemiology
Retrospective Studies
Risk Factors
Self-Help Groups
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Summary: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.
ISSN:0301-4738
1998-3689
DOI:10.4103/ijo.IJO_1818_19