Caring for a child with CP can both positively and negatively impact on a parent's life. There is value for both parents and children if parental concerns and determinants of QOL are considered in overall programme planning and service delivery for children and their families.

With an increasing number of paediatric quality of life (QOL) instruments being developed, it is becoming difficult for researchers and clinicians to select the most appropriate instrument. Reviews of QOL instruments tend to report only basic properties of the instruments such as domains and psychometric properties. This paper seeks to appraise critically the conceptual underpinnings of paediatric QOL instruments. A systematic review was conducted to identify QOL instruments for children aged 0 to 12 years, and to examine and compare their conceptual frameworks, definitions employed, and structure. Both generic and condition-specific measures were reviewed. Fourteen generic and 25 condition-specific QOL instruments were identified. Eleven types of definition of QOL and health-related QOL and three theories of QOL were identified. QOL was measured by a variety of domains including emotional, social and physical health, and well-being. Items commonly assessed difficulties, or intensity/frequency of feelings/symptoms, in contrast to positive aspects of life and happiness. The findings highlight the diversity that is apparent in the conceptualization of paediatric QOL and draw attention to the lack of empirical evidence for many of the fundamental assumptions. The impact of the conceptual underpinnings of the instruments on the resulting QOL scores is discussed.

BackgroundOften new arrivals from refugee backgrounds have experienced poor health and limited access to healthcare services. The maternal and child health (MCH) service in Victoria, Australia, is a joint local and state government operated, cost-free service available to all mothers of children aged 0–6 years. Although well-child healthcare visits are useful in identifying health issues early, there has been limited investigation in the use of these services for families from refugee backgrounds. This study aims to explore experiences of using MCH services, from the perspective of families from refugee backgrounds and service providers.MethodsWe used a qualitative study design informed by the socioecological model of health and a cultural competence approach. Two geographical areas of Melbourne were selected to invite participants. Seven focus groups were conducted with 87 mothers from Karen, Iraqi, Assyrian Chaldean, Lebanese, South Sudanese and Bhutanese backgrounds, who had lived an average of 4.7 years in Australia (range one month-18 years). Participants had a total of 249 children, of these 150 were born in Australia. Four focus groups and five interviews were conducted with MCH nurses, other healthcare providers and bicultural workers.ResultsFour themes were identified: facilitating access to MCH services; promoting continued engagement with the MCH service; language challenges; and what is working well and could be done better. Several processes were identified that facilitated initial access to the MCH service but there were implications for continued use of the service. The MCH service was not formally notified of new parents arriving with young children. Pre-arranged group appointments by MCH nurses for parents who attended playgroups worked well to increase ongoing service engagement. Barriers for parents in using MCH services included access to transportation, lack of confidence in speaking English and making phone bookings. Service users and providers reported that continuity of nurse and interpreter is preferred for increasing client-provider trust and ongoing engagement.ConclusionsAlthough participants who had children born in Melbourne had good initial access to, and experience of, using MCH services, significant barriers remain. A systems-oriented, culturally competent approach to service provision would improve the service utilisation experience for parents and providers, including formalising links and notifications between settlement services and MCH services.

This study provides evidence to suggest that discordance among parent-child pairs on KIDSCREEN scores may be as a result of different reasoning and different response styles, rather than interpretation of items. These findings have important implications when parent-proxy reported HRQOL is used to guide clinical/treatment decisions.