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Establishing support groups to support parents of preterm babies with retinopathy of prematurity: A pilot study
Bala Vidyadhar S Malladi1, Gowri K Iyer1, G V S Murthy2
1India ROP Partners Implementation Consortium (ROP Project Team) Located at Indian Institute of Public Health, Hyderabad, India.
Insights
Parent support groups aim to help families of premature infants at risk for retinopathy of prematurity (ROP). While still in early stages, these groups offer potential benefits like improved awareness and reduced anxiety for parents.
Area of Science:
- Ophthalmology
- Public Health
- Pediatrics
Background:
- India faces the highest global burden of preterm births, a key risk factor for retinopathy of prematurity (ROP).
- Limited parental awareness and information exacerbate the challenge of managing ROP and preventing vision loss.
- Retinopathy of prematurity (ROP) is a significant cause of preventable blindness in premature infants.
Purpose of the Study:
- To establish and pilot ROP parent support groups in India.
- To provide counseling, information, resources, and guidance to parents of infants with ROP.
- To enhance parental knowledge, awareness, and coping mechanisms for ROP.
Main Methods:
- A strategy for developing ROP parent support groups was implemented across four Indian states.
- A pilot project involved conducting five support group sessions in three cities in collaboration with eye institutes.
- Parental participation was assessed through attendance rates at the conducted sessions.
Main Results:
- The initiative is in its early implementation phase, with no impact data currently available.
- Low attendance was observed, with only 30% of invited parents attending the support group meetings.
- Initial experiences indicate potential benefits for parental awareness, knowledge, and emotional well-being.
Conclusions:
- ROP parent support groups show promise in improving parental understanding and management of ROP.
- These groups can alleviate parental anxiety and empower families to better support their children.
- Further research is needed to evaluate the long-term impact and optimize the effectiveness of ROP parent support groups.
Abstract:
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.
