Angela M Morrow

Adverse events and health status following botulinum toxin type A injections in children with cerebral palsy

Aim  The aim of this study was to assess changes in health status before and after, as well as adverse events after, botulinum toxin type A (BoNT‐A) injections in children with cerebral palsy (CP).

Different priorities : a comparison of parents' and health professionals' perceptions of quality of life in quadriplegic cerebral palsy

Objective: Almost all children with quadriplegic cerebral palsy (CP) have feeding difficulties. Our aim was to identify the major determinants of feeding-related quality of life (QoL) in children with quadriplegic CP from the perspective of parents and to compare findings with the perceptions of health professionals. Design: Qualitative cross-sectional study. Methods: A trained facilitator conducted four semi-structured focus groups with parents (n = 21) of children with quadriplegic CP attending a multi-disciplinary feeding clinic at a paediatric teaching hospital in Sydney, Australia, between November 2003 and February 2005. All sessions were audio- and video-taped. NVivo software was used to facilitate thematic analysis of the transcribed audiotapes and to compare them with data from focus groups conducted by the same research team with health professional participants. Results: Parental perceptions clustered into the same five themes described by health professionals (parent–child interaction; delivery of health services; the child’s emotional well-being; the child’s physical well-being, and socialisation), but the content of the subthemes and the values attached differed, for example health professionals valued weight gain, whereas parents valued their child feeling loved. Health professionals did not consider the full range of issues important to families. The differences in priorities for treatment outcomes negatively affected the parent–health professional relationship. Conclusions: Disparities between parents’ and health professionals’ perceptions provide useful insight into communication between the two, identify the range of issues important to families, and highlight the parents’ expert role in assessing the child’s emotional and social well-being. The five themes identified provide a framework for a comprehensive evaluation of the health status of children with quadriplegic CP and feeding difficulties.

Condition-specific quality of life questionnaires for caregivers of children with pediatric conditions: a systematic review

PurposeChildhood illness or disability can affect the quality of life (QoL) of the child’s primary caregiver. Our aim was to identify, describe the content and systematically review the psychometric properties of condition-specific QoL questionnaires for caregivers of children.MethodsMedline, PsycInfo, Embase, CINAHL, and the Cochrane library databases were searched from 1 January 1990 to 30 June 2011. Articles related to the development and measurement of caregiver QoL were screened to identify condition-specific questionnaires. The characteristics of the questionnaires were extracted, and their psychometric properties were evaluated using the consensus-based standards for the selection of health measurement instruments checklist with 4-point scale.ResultsWe identified 25 condition-specific caregiver QoL questionnaires covering 16 conditions. Conditions included atopic dermatitis, asthma, diabetes, oro-facial disorders, and two acute illnesses. Questionnaires were developed predominantly in high-income countries. Questionnaires had the highest quality rating for content validity, followed by hypothesis testing. Methodological quality was satisfactory for criterion validity; fair in reliability and responsiveness; and poor in internal consistency and structural validity.ConclusionsThe increasing number of questionnaires developed over time shows improved recognition of the importance of caregiver QoL. 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. Cultural validation of existing and new questionnaires in lower-income countries is necessary. Data collected by condition-specific questionnaires can assist clinicians and health economists in estimating caregiver burden and the types of healthcare services caregivers require and may be useful for healthcare administrators to evaluate interventions.

Embedding research in clinical practice: differences in attitudes to research participation among clinicians in a tertiary teaching hospital.

Despite a drive to increase research in healthcare settings, clinician participation in research remains infrequent. This paper describes an online survey comparing attitudes with research participation among clinicians (doctors, nurses and allied health professionals) at an Australian tertiary childrens hospital. Differences between professional groups support the existence of different professional cultures surrounding research, suggesting that multiple strategies are required to improve participation in research.

Assessing quality of life in paediatric clinical practice

The rising prevalence of children with chronic conditions has made quality of life an increasingly important outcome measure in paediatric practice. The discrepancy between doctors’ and patients’ perceptions of quality of life makes formal assessment necessary.

Impact of children's influenza-like illnesses on parental quality of life: A qualitative study

Influenza and influenza‐like illness (ILI) in otherwise healthy children has considerable impact on their parents. This study explored the impact of childrens ILI on parental quality of life (QoL).

Developing BrightHearts: a pediatric biofeedback mediated relaxation app to manage procedural pain and anxiety

The objective of this study was to develop a child‐friendly biofeedback‐mediated relaxation device called BrightHearts.

The Feasibility of Using the BrightHearts Biofeedback-Assisted Relaxation Application for the Management of Pediatric Procedural Pain: A Pilot Study

The objective of this pilot study was to assess the acceptability and feasibility of using BrightHearts, a biofeedback‐assisted relaxation application (app), in children undergoing painful procedures.