Impact of paediatric human immunodeficiency virus infection on children's and caregivers' daily functioning and well-being: a qualitative study

• Published in: Child : care, health & development health & development, 2012-09, Vol.38 (5), p.714-722
• Main Authors: Punpanich, W., Gorbach, P. M., Detels, R.
• Format: Article
• Language: English
• Subjects: Acquired immune deficiency syndrome; Activities of Daily Living; Adaptation, Psychological; Adjustment; Adolescent; Adult; AIDS; Attitude to Health; Caregivers; Caregivers - psychology; Carers; Child; Children; Childrens health; chronic illness; Confidentiality; Coping; Cost of Illness; Diagnosis; Educational Status; emotional well-being; Emotions; Family Relationship; Fatigue - virology; Female; Health Status; HIV; HIV Infections - psychology; Human immunodeficiency virus; Humans; Infection; Interpersonal Relations; Male; Medication Adherence; Mental health; Parents - psychology; Pediatrics; Physical Health; psychosocial factors; Qualitative Research; Quality of Life; Social support; Wellbeing
• ISSN: 0305-1862; 1365-2214
• DOI: 10.1111/j.1365-2214.2011.01301.x

Background  Human immunodeficiency virus (HIV) infection impacts not only upon the physical health of affected children, but also their psychosocial functions, family relationships and economical status. Caregivers are confronted with complex challenges related to the physical, emotional and financial demands of raising these children. The purpose of this study was to enhance our understanding of the impact of HIV disease on both children's and caregivers' well‐being, using a qualitative inquiry approach. Methods  A total of 35 primary caregivers of HIV‐infected children participated in in‐depth interviews. The issues discussed included the major negative impacts on children's daily functioning and well‐being, and the perceived caregiver/parental burden. Participants included parents (40%), grandparents (22.8%), other relatives (e.g. uncles, aunts) (34.3%) and one foster parent (2.8%). Results  Qualitative analysis revealed that the major negative impacts of HIV/AIDS included physical symptoms, school performance and relationship changes. The major negative impacts on caregivers' well‐being included acceptance of the diagnosis, dealing with the financial burden and keeping the diagnosis private. Conclusions  Approaches are needed to address these challenges by enhancing families' coping skills and building supportive networks.