Health related quality of life and perception of stigmatisation in adolescents living with sickle cell disease in Nigeria:a cross sectional study

Background: Sickle cell disease impacts the physical, emotional and psychological aspects of life of the affected persons, often times exposing them to disease associated stigma from the society and alters the health related quality of life (HRQoL). This study compared the HRQoL of adolescents with sickle cell disease with their healthy peers, identified socio-demographic and clinical factors impacting HRQoL, and determined the extent and effects of SCD related stigma on quality of life. Procedure: We conducted a cross-sectional survey among 160 adolescents, 80 with SCD and 80 adolescents without SCD. Socio-demographic and clinical data were collected using a pre-tested questionnaire. HRQoL was investigated using the Short Form (SF-36v2) Health Survey. SCD perceived stigma was measured using an adaptation of a perceived stigma questionnaire. Results: Adolescents with SCD have significantly worse HRQoL than their peers in all of the most important dimensions of HRQoL (physical functioning, physical roles limitation, emotional roles limitation, social functioning, bodily pain, vitality and general health perception) except mental health. Recent hospital admission and SCD related complication further lowered HRQoL scores. Over seventy percent of adolescents with SCD have moderate to high level of perception of stigmatisation. Hospitalisation, SCD complication, SCD stigma were inversely, and significantly associated with HRQoL. Conclusions: Adolescents living with SCD in Nigeria have lower health related quality of life compared to their healthy peers. They also experience stigma that impacts their HRQoL. Complications of SCD and hospital admissions contribute significantly to this impairment. Pediatr Blood Cancer 2015;62:1245-1251.

Perception of risk, feelings of vulnerability and effects on driving behaviour in women drivers across the lifespan.

Sustained driving in older age has implications for quality of life and mental health. Studies have shown that despite the recognised importance of driving in maintaining health and social engagement, many women give up driving prematurely or adopt self-imposed restrictive driving practices. Emotional responses to driving have been implicated in these decisions. This research examined the effect of risk perception and feelings of vulnerability on women’s driving behaviour across the lifespan. It also developed and tested a modified theory of planned behaviour intervention to positively affect driving habits. The first two studies (N=395) used quantitative analysis to model driving behaviours affected by risk perception and feelings of vulnerability, and established that feelings of vulnerability do indeed affect women’s driving behaviour, specifically resulting in increases in driving avoidance and the adoption of maladaptive driving styles. Further, that self-regulation, conceptualised as avoidance, is used by drivers across the lifespan. Qualitative analysis of focus group data (N=48) in the third study provided a deeper understanding of the variations in coping behaviours adopted by sub-groups of drivers and extended the definition of self-regulation to incorporate adaptive coping strategies. The next study (N=64) reported the construction and preliminary validation of the novel self-regulation index (SRI) to measure wider self-regulation behaviours using an objective measure of driving behaviour, a simulated driving task. The understanding gained from the formative research was used in the final study, an extended theory of planned behaviour intervention to promote wider self-regulation behaviour, measured using the previously validated self-regulation index. The intervention achieved moderate success with changes in affective attitude and normative beliefs as well as self-reported behaviour. The results offer promise for self-regulation, incorporating a spectrum of planning and coping behaviours, to be used as a mechanism to assist drivers in achieving their personal mobility goals whilst promoting safe driving.