Investigation of the Lived Experience of Family Members of a Person With Intellectual Disabilities Who Presents With Pica

Background

Pica, the persistent ingestion of non-nutritive substances, poses significant health risks for individuals with intellectual disabilities yet remains under-recognised, particularly in home settings.

Method

This qualitative study explored the lived experiences of family members supporting a person with intellectual disabilities who engages in pica. Using Interpretative Phenomenological Analysis, four in-depth, semi-structured interviews were conducted with primary caregivers.

Results

Five superordinate themes were identified: Living on High Alert, Systemic Failures in Care, Emotional Erosion, Resourceful Parenting, and The Silence Around Pica. Caregivers described constant vigilance, emotional exhaustion, and the strain of managing life-threatening behaviours with little professional input. They also demonstrated creativity and resilience while fulfilling multiple roles as carers, advocates, and problem-solvers.

Conclusions

Findings highlight a profound gap between the severity of pica and the adequacy of professional responses, underscoring the need for increased awareness, training, and specialist support.