How patients experience progressive loss of visual function: a model of adjustment using qualitative methods

Area of Science:

• Ophthalmology
• Psychology
• Behavioral Science

Background:

• Retinitis pigmentosa (RP) causes progressive vision loss, leading to significant functional and psychological challenges.
• Patients with RP experience emotional suffering during their adjustment process.
• Understanding the adjustment process is crucial for providing effective patient support.

Purpose of the Study:

• To explore the lived experiences of individuals adjusting to retinitis pigmentosa.
• To develop a model that explains the process of adapting to vision loss from RP.
• To identify strategies that can help alleviate patient suffering associated with RP.

Main Methods:

• Qualitative analysis of focus groups and semistructured interviews.
• Recruitment of adult participants with RP from specialized eye institutes and patient organizations.
• Development of an adjustment model based on transcribed participant narratives.

Main Results:

• Individuals with RP actively seek to understand the implications of their diagnosis.
• Successful adjustment requires a shift in personal identity from sighted to visually impaired.
• Participants' self-identification varied: 6 sighted, 10 in transition, 27 visually impaired.
• The adjustment process aligns with a five-stage model of behavior change.

Conclusions:

• A proposed five-stage model offers a framework for understanding RP adjustment.
• This model can aid ophthalmologists in mitigating patient suffering.
• Effective support for RP patients involves addressing both functional and psychological aspects of vision loss.