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Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting

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Participation as Co-Occupation Between Parents and Adult Children With Profound Intellectual and Multiple

Katie Dahlerbruch¹, Christine Helfrich², Simone V Gill¹

¹Boston University, MA, USA.

OTJR : Occupation, Participation and Health

|November 5, 2024

Summary

Parents describe occupational participation for adults with profound intellectual and multiple disabilities (PIMD) as co-occupations. Essential co-occupations involve shared physicality, while non-essential ones focus on shared meaning and emotion.

Keywords:

caregivers co-occupation disability occupational engagement participation

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Area of Science:

Occupational Science
Disability Studies
Psychology

Background:

Adults with profound intellectual and multiple disabilities (PIMD) often have low occupational engagement due to high assistance needs.
Understanding their participation is crucial for enhancing quality of life and therapeutic interventions.

Purpose of the Study:

To explore how parents conceptualize and describe occupational participation for their adult children with PIMD.
To apply the theory of co-occupation to understand these descriptions.

Main Methods:

Conducted semi-structured interviews with 9 parents of adults with PIMD.
Analyzed interview data using the theory of co-occupation.
Triangulated findings with existing literature.

Main Results:

Parents described participation as co-occupation, differentiating between "essential" and "non-essential" occupations.
"Essential" co-occupations were characterized by shared physicality.
"Non-essential" co-occupations involved joint meaning (shared intentionality) and emotional responses (shared emotionality).

Conclusions:

A conceptual framework for understanding essential versus non-essential co-occupations in adults with PIMD was developed.
Recognizing the subjective experiences of adults with PIMD is vital.
Findings provide a basis for occupational therapists to improve occupational engagement in this population.