Living without a diagnosis: the parental experience.

Area of Science:

• Genetics and Genetic Counseling
• Psychosocial Health
• Qualitative Research

Background:

• Parental experiences of raising children with undiagnosed conditions are under-researched.
• Understanding these experiences is crucial for providing appropriate support.

Purpose of the Study:

• To explore the lived experiences of parents raising a child without a medical diagnosis.
• To identify the psychosocial challenges and coping mechanisms employed by these families.

Main Methods:

• Qualitative, semistructured interviews were conducted with 14 parents.
• Participants were recruited from a UK Regional Genetics Centre.
• Grounded Theory methodology was used for data analysis.

Main Results:

• Parental experience is a journey with distinct emotional and sociological components.
• Emotional aspects include problem realization, testing, desire for diagnosis, and coping.
• Social aspects involve interactions with professionals, support networks, education, and housing.

Conclusions:

• The lack of a diagnosis adds significant complexity to the parental experience.
• While some challenges overlap with diagnosed conditions, the uncertainty of an undiagnosed child creates unique psychosocial burdens.