Life history of caregivers of person with intellectual disabilities and autistic who are willing and unwilling to be discharged from the hospital: Inpatient treatment in a child and adolescent psychiatric hospital

Abstract

The research seeks to study life histories, existing power and identity of the caregivers of persons with intellectual disabilities and autistic with readiness for discharge but unwilling to do so. Qualitative research is conducted with an in-depth interview and narrative technique, collected by semi-structured interviews and purposive samplings covering 12 research participants: 9 caregivers of persons with intellectual disabilities who have readiness for discharge but unwilling to leave from inpatient care; and 3 caregivers of persons with intellectual disabilities who have readiness and willing to discharge. The results show three significant findings. (1) The caregivers of inpatients accept the disabilities status of their children due to the services of the hospital which render better caring environment than staying at home. The worthiness assessment is proved. (2) Power of the caregivers stems from three sources: self-autonomy; family support; and social environment. They manipulate the power to negotiate with the inpatient service and gain access to welfare benefit for disabilities which create valuable resource possession. (3) The identity of the caregivers refers to self-understanding. Despite the overwhelming fatigues, they perceive a valuable of life force which shapes their permanent identity.

Recommendation is the necessity to restructure the connection to post-discharge care more firmly in order to uplift the assurance in fair accessibility to the hospital services. Moreover, policy involving the extended mission to work closely with involved communities and the construction of social sphere and welfare responsive to the diversity of person with intellectual disabilities should be initiated.