Paediatric Human Immunodeficiency Virus/Acquired Immune Deficiency Syndrome related neurological illnesses: the multidisciplinary perspective in an acute quaternary.

Abstract

ABSTRACT Introduction: The HIV/AIDS pandemic has adverse medical and psychosocial effects on affected children, caregivers and imposes significant challenges on health care professionals. The prevalence of Paediatric HIV/AIDS in South Africa and KwaZulu Natal is well documented. The adverse neurological effects of HIV impair optimum neurodevelopment and hence a multidisciplinary team is essential in the management of the sequelae of neurological and neuropsychiatric symptoms associated with HIV/AIDS. The caregiver is regarded as an important partner in the treatment process to ensure adherence and compliance of both medical and rehabilitative components, completion of home programmes and providing of critical collateral information. The lens through which children with HIV/AIDS related neurological illnesses view the rehabilitation process is also crucial to determine effectiveness of therapeutic intervention. Aims: This study comprised of three phases. Firstly a profile of the children diagnosed with HIV/AIDS related neurological illnesses admitted to an acute quaternary health care facility was initiated. The second aim was to describe the roles and responsibilities of the multidisciplinary team, their priorities of care as well as to explore the challenges and enablers of service provision as experienced by the team. Furthermore the researcher sought to describe the experiences of primary caregivers and their children who are diagnosed with HIV/AIDS related illnesses in order to highlight some of the challenges and barriers experienced by these end users regarding the service provided by the paediatric neurodevelopmental team. Methods: A mixed methods explanatory sequential study design within a multistage framework was utilised. Phase one consisted of a file audit (n=139) to determine the profile of HIV related neurological illnesses in affected children admitted to an acute quaternary paediatric neurology ward. Statistical analysis included the Wilcoxon signed rank test, the Kruskal -Wallis equality of populations rank test, Spearman correlation and the Mann Whitney test. Phase two comprised of the vi administration of a questionnaire to the multidisciplinary paediatric neurodevelopmental team (n=27) followed by a focus group (n=6). The study was concluded with phase 3 detailing semi-structured interviews with primary caregivers (n=5) and children with HIV/AIDS related neurological illnesses (n=3). Results: The neurological and neuropsychiatric deficits as a result of HIV/AIDS were identified with the most common central nervous illness being HIV Encephalopathy. Physiotherapy was the predominant service offered to this profile of children. The majority of the functional status scores were categorised between mildly-moderately abnormal except for those children who demised (n=7) who demonstrated severely abnormal - very severely abnormal scores. The multidisciplinary paediatric neurodevelopmental team identified priority management strategies, which informed treatment approaches, roles and responsibilities and barriers and enablers of integrated and holistic care. Primary caregivers of children with HIV/AIDS related neurological illnesses highlighted numerous stressors as well as psychosocial factors relating to the diagnosis and prognosis of HIV/AIDS. Children with HIV/AIDS related neurological illnesses drew on their perspectives when engaging in therapy using both narrative and diagrammatic representation of their experiences. Conclusion: The study highlighted the multifarious presentation of paediatric HIV/AIDS related neurological illnesses in an acute quaternary health care facility. Future studies can identify models for intervention and to develop clinical guidelines and protocols as well clinical care pathways for managing children diagnosed with HIV/AIDS related neurological illnesses. Key words: Paediatric HIV/AIDS, Neurological illnesses, Multidisciplinary team, Caregiver and Rehabilitation.