Parent perspectives on the barriers and enablers to effective pain assessment in children with disabilities : A literature study

Abstract: Introduction: Children with disabilities (CwD) experience pain more often than healthy children. Assessing their pain is complicated by their limited communication skills, multiple complex pain problems and the presence of maladaptive behaviors, leading to underestimation and undertreatment of pain. Parents of CwD have an important role to play in the assessment of their child’s pain. Objective: To investigate parents’ experiences and perceptions on pain assessment in children with disabilities (CwD). Method: A qualitative literature review of ten original academic studies. The studies were from PubMed, CINAHL and Google Scholar, and reviewed with the help of the Swedish Agency for Health Technology Assessment and Assessment of Social Services (SBU) review template for the assessment of studies with qualitative methodology. Results: Barriers and enablers influencing the access of CwD to effective pain assessment were found at two levels: parents and health care professionals. The main barriers identified are all linked to stigma and discrimination against CwD in society. Both parents and health care professionals lack knowledge on pain and pain assessment in CwD. However, parents have a wealth of expertise on their child and its pain, and a capacity to learn more. Partnerships between parents and health care professionals exist, but are weak and do not take the full advantage of their potential. Conclusion: The barriers and enablers influencing effective access to pain assessment for CwD are interlinked and exist at different levels of influence. Therefore, simultaneous interventions at multiple levels are required to increase access to pain assessment for CwD.