The psychological and social impact of influenza-like-illness in children on their families

Abstract

Influenza and influenza-like-illness (ILI) can cause excess paediatric morbidity. There are around 20 million and 34 million cases of influenza and respiratory syncytial virus infections occurring worldwide in children younger than 5 years of age respectively. Research has shown that influenza and ILI in children pose significant medical and economic impacts. Parents of children with ILI had up to 4.3 days work days lost per episode for self-reported influenza. However, the psychological and social impacts of ILI have not been well explored. Understanding these impacts aids in the comprehensive assessment of disease burden, and assists in evaluation of health interventions targeting ILI. This thesis has two aims. The first aim is to explore the psychological and social impact of ILI in children on their families, through measuring the quality of life (QoL) of parents of children affected by ILI. The second aim is to develop an ILI-specific QoL questionnaire for measuring parental QoL. A systematic review was conducted to identify and evaluate the psychometric properties of condition-specific QoL questionnaires for caregivers of children with paediatric conditions. Twenty-five condition-specific caregiver QoL questionnaires covering 16 conditions were identified. Conditions included atopic dermatitis, asthma, diabetes, oro-facial disorders, and two acute illnesses. Questionnaires were developed predominantly in high-income countries. Questionnaires were high in content validity and rigor of hypothesis testing; satisfactory for criterion validity; fair in reliability and responsiveness; but poor in internal consistency and structural validity. There is a paucity of QoL questionnaires for caregivers of otherwise healthy children suffering from physical injuries and acute conditions associated with significant caregiver burden. No ILI-specific QoL questionnaires were identified. The present study employed a mixed methods approach, which consisted of a quantitative survey and qualitative interviews. Healthy children aged 6-36 months were recruited from 90 childcare centres and 2 paediatric-focused general practices in Sydney, Australia, during 2010. For the quantitative survey, QoL of parents of children aged 6-36 months prior to the 2010 influenza season using the PAR-ENT-QoL questionnaire (ear-nose-throat-specific) was measured, then subsequently for parents of children with ILI (designated as the ILI group) using the SF-12v2 Acute Form (generic) and PAR-ENT-QoL, and contemporaneously for parents of aged-matched children without ILI (designated as the non-ILI group). Of 381 children enrolled from 90 childcare centres, 105 developed ILI. Parents had significantly lower QoL during the period of their child’s ILI, compared with the period before ILI and with parents of children without ILI. Two factors were significantly associated with parental QoL: total time spent caring for their child during ILI and whether the child had severe or non-severe ILI. Correlations of PAR-ENT-QoL and SF-12v2 scores were satisfactory. Qualitative semi-structured interviews were then conducted with parents of children with severe ILI among the same sample group. The aim was to explore parents’ experiences and the impact on their lives while their child had ILI. A total of 21 interviews were conducted with 23 parents. Interviews were recorded, transcribed, and analysed using a modified grounded theory approach. Five main themes emerged: ―sudden changes in daily life‖, ―emotional impact‖, ―social isolation and relationship changes‖, ―importance of family and friend support‖, and ―interaction with the medical system‖. Perceived practical and emotional support from family and/or friends and consultations with the treating doctor appeared to moderate the impact. Based on the systematic review (described in Chapter 2), as well as findings from the quantitative survey and qualitative interviews, Care-ILI-QoL (a new ILI-specific parental QoL questionnaire) was drafted and developed. Healthy children aged 6-48 months were recruited from 48 childcare centres in Sydney, Australia during 2011. The Care-ILI-QoL and SF-12v2 Acute form instruments were administered in the 2011 influenza season to parents of a sick child 2 weeks after the onset of ILI, and again 2 weeks after the child had recovered. Out of the 125 children enrolled, 55 children had one or more episodes of ILI (total 75 ILI episodes). After undergoing item reduction procedures and exploratory factor analysis, Care-ILI-QoL was reduced from 25 to 16 items covering 4 factors: Daily Activities; Perceived Support; Social Life; and Emotions. Care-ILI-QoL has satisfactory concurrent and discriminant validity, good internal consistency, and excellent responsiveness. This thesis promotes a more holistic and profound understanding of the impact of ILI in children on their families. Care-ILI-QoL is the first ILI-specific QoL instrument for parents and is demonstrated to be valid and reliable in a developed country setting where the child is affected by ILI. It can provide a quantitative indicator for psychological and social impacts of ILI, has the potential to be applied in clinical and research settings to assist measurement of disease burden, or as a needs assessment vii tool for resources such as social support; to inform policy changes in domains such as the workplace or childcare centres, or prioritisation of vaccine development. It also has the potential to be derived as a preference-based single index measure for economic evaluation. It is hoped that the present research will contribute to a long-term outcome whereby parents experience only minimal impact in their QoL when their child has ILI.