Sharing lived experiences through photography

Bringing together consumers and community to advance knowledge of feeding difficulties in childhood was the goal of an innovative photographic exhibition – Be Not Afraid Of My Body.

The exhibition was the culmination of behind-the-scenes work by SPHERE’s Consumer and Community Involvement and Knowledge Translation Strategic Platform and the SUCCEED Child Feeding Alliance, funded by SPHERE’s Early Life Determinants of Health Clinical Academic Group (ELDoH CAG).

For many, the idea of feeding difficulties in childhood may conjure up images of fussy toddlers refusing to eat certain foods but childhood feeding difficulties can be far more complicated.

“Feeding difficulties include a variety of feeding or mealtime behaviours that are problematic for a child or family,” explains Associate Professor Ann Dadich who is also Deputy Director of SPHERE’s Consumer and Community Involvement and Knowledge Translation Strategic Platform.

These can include an inability to consume various foods; a limited, excessive or variable appetite; prolonged mealtimes; and/or disruptive mealtime behaviours. Many children with serious health conditions like cancer, heart disease, prematurity, cerebral palsy, or cleft palate, are unable to eat and require tube-feeding.

“Tube-feeding can increase developmental issues in children which can be exacerbated because families are often unable to venture into social settings that are critical for child development.”

Through discussion between the SPHERE Consumer and Community Involvement and Knowledge Translation Strategic Platform and the SUCCEED Child Feeding Alliance came a recognition of the importance of photography. Many children who tube-feed and their families are unable to capture family moments on film. Others, including extended family members, stigmatise parents and children, failing to understand feeding difficulties or feeding care. For this reason, Kate Disher-Quill’s creative talents were enlisted to capture and convey these lived experiences. Kate, an established artist and photographer, is an artist-in-residence with the Strategic Platform with an exceptional ability to visually communicate what is often difficult to communicate, verbally – like emotions, knowledge, and experiences.

Kate spent time with several

children who tube-feed and their families to better understand their experiences. She also invited them to be photographed and to take photographs. The result was a complement of exquisite photographs that formed the exhibition – Be Not Afraid of My Body – illustrating the lived experiences of feeding care.

“The exhibition has been displayed at different health services with considerable impact – not only among those who can personally relate to

feeding difficulties or feeding care, but those who have experienced vulnerability, strength, and resilience. The exhibition is, indeed, one that conveys experiences that many, if not all of us can relate to,” says Associate Professor Dadich.

Co-led by Professor Katherine Boydell, Mrs Ainslie Cahill, and Associate Professor Ann Dadich, the SPHERE Consumer and Community Involvement and Knowledge Translation Strategic Platform hosts a growing number of artists-in-residence, each with their own creative expertise.

Together, one of the platform’s central goals is to advance knowledge translation within and beyond SPHERE by promoting consumer and community involvement via the arts. To foster collaboration, the strategic platform works with and supports the different Clinical Academic Groups, including the Early Life Determinants of Health (ELDoH) Clinical Academic Group.

The SUCCEED Child Feeding Alliance was ignited by a seed grant provided by the ELDoH CAG. The Alliance represents a unique collaboration between health professionals, academics, artists, and families who are passionate about supporting children with feeding difficulties and their families. The project harnesses the expertise, skills, and networks of paediatrician Dr Chris Elliot (St George Hospital), Associate Professor Ann Dadich (Western Sydney University), Professor Nick Hopwood (University of Technology Sydney), speech pathologist Kady Moraby (NSW Health), and parents of children with feeding difficulties, Anna Ierardo, Jessica Gowans and Irene Bernard.

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