'''We Matter Too": Need of parents caregivers of children with disabilities and their experiences with the healthcare system.

Abstract

Due to a decrease in manpower, the Norwegian healthcare system has been plagued with a shortage of healthcare professionals which puts parents as the front runners for the long-term care of their children with disability. Yet their expertise and significant contribution in the field of informal caregiving has gone unnoticed by the healthcare system. This new role placed on parents has created a burden which has caused physical, psychological, and emotional burden and has been left unmet by the healthcare system. This study explores the needs of parent caregivers, their experience with the healthcare system and the coping mechanisms used in their caregiving role. An inductive qualitative research approach was taken, using an in-depth semi-structured interview guide on eight parent caregivers who had children with disability. Thematic analysis was used in analyzing the interview data and was divided into themes and sub-themes. Findings from the study show that parents caregivers, as much as the children they cared for, need physiological and psychological support to cope with the continuous but difficult tasks of caring for their children with disability. Although, some of these parents have been able to develop some form of coping mechanisms through social networking and supports from families and friends. Nonetheless, the research posits for the possibility of a joint effort between the healthcare system and the parents' caregivers to find better ways to support each other.