Paediatric Human Immunodeficiency Virus/Acquired Immune Deficiency Syndrome related neurological illnesses: the multidisciplinary perspective in an acute quaternary.
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Date
2017
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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
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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.
Description
Master’s Degree. University of KwaZulu-Natal, Durban.