An exploration of communication during wheelchair and adaptive seating system assessments for disabled children and their families (2009)
Disabled children and their families have been the subject of significant policy developments over recent years in the UK (Department of Health/ Department for Education and Skills, 2004; Department for Work and Pensions et al., 2005; Department for Education and Skills, 2005).
For many of these children and their families the assessment and provision of an appropriate wheelchair and adaptive seating system has the potential to positively impact on their health, social and psychological needs (Farley, 2003; Neilson and et al, 2001; Watson and Woods, 2005; Care Services Improvement Partnership, 2006; Sharma and Morrison, 2006; Social Policy Research Unit (SPRU), 1995; Pountney et al., 2002). However wheelchair services in the UK have been reported as not meeting the needs of children and families or fulfilling policy aims, resulting in children and their families being further disabled and disempowered in society (Audit Commission, 2000; Audit Commission, 2002; Audit Commission, 2003; Council for Disabled Children, 2006; Langerman and Worrall, 2005; Sharma and Morrison, 2006; Social Policy Research Unit (SPRU), 1995).
A core tenet highlighted in policy and research literature is the need for effective two-way communication, that facilitates sharing of power between children and their families and health/social/educational professionals involved at all stages of the assessment and provision processes, to ensure policy standards and client needs are met.
Communication is a broad term that not only involves the spoken and written word, but also the manner of speaking, body language, gestures and effective listening. To communicate effectively involves exchanging information, sharing of ideas and feelings, being aware of the effects of non-verbal communication, and joint decision-making. In order for communication to be effective there must be trust between all involved (Department for Education and Skills, 2005). Communicating effectively with some children and adults may require the use of alternative or augmentative communication systems or interpreters. The right for all children to communicate and be involved in decisions about their care has been enshrined in existing law (United Nations, 1989). Communication has been documented as a core skill for professionals to be competent in by a wide variety of professional groups (College of Occupational Therapists, 2005; General Medical Council, 2006; The Chartered Society of Physiotherapy, 2005).
There is a gap between policy, research and practice in the field of wheelchairs and seating. Available evidence suggests that there is widespread dissatisfaction and deficits with communication practices between not only children and their families and the professionals involved but between different professional groups as well. (Audit Commission, 2003; Council for Disabled Children, 2006; Sharma and Morrison, 2006). Reports highlight that communication practices that promote power-sharing and child and family centred practices are inconsistent and,in places, poorly developed or non-existent (Council for Disabled Children, 2006; Langerman and Worrall, 2005; Sharma and Morrison, 2006). Where there are pockets of good practice procedures should be disseminated, shared and implemented more widely than at present (NHS Modernisation Agency, 2004).
Research into communication practices and power-sharing in other fields (such as other areas of health care and education) and countries, has led to increased awareness and understanding of communication practices and their effects on power relationships in those fields, and of the constraints involved in implementing power sharing in day-to-day practice. (Irving and et al, 2006; Parry, 2005; Parry, 2004a; Parry, 2004b;Dixon-Woods, 2001; Jones et al., 2004; Savage and Callery, 2007; Ray, 2003; Ray, 2002; Rosenweig and al, 1999; Campbell, 2004; Irving, 2002; Wilson, 2001; Talvitie and Reunanen, 2002; Vehkakoski, 2004; Aita et al., 2005,;MacDonald and Callery, 2004; Wilcox et al., 2006; Lloyd et al., 2000; O'Keefe, 2001; Audit Commission, 2003,;Council for Disabled Children, 2006; Sharma and Morrison, 2006;Wilkins et al., 2001). Findings have been incorporated into professional training programmes, and have led to positive outcomes in day-to-day practice in some areas when evaluated (Newes-Adeyi and al, 2004; Lloyd et al., 2000).
The need to critically look at, and change, current communication practices has been highlighted as a necessary step for many wheelchair services if they are to improve service delivery. This is a challenging goal to achieve for all service providers. Barriers to changing communication practices can be seen and hypothesised to exist in many forms and from many different perspectives, and can be linked to wider societal systems (Shakespeare, 2006; Wilkins et al., 2001; Finkelstein, 2001). Research in other areas of clinical practice has illustrated there is no easy or complete answer to overcoming some of these barriers (Aita et al., 2005; Dalley, 1999; Jones et al., 2004;Wilkins et al., 2001). However, small changes and efforts at the daily clinical practice level can make a difference (NHS Modernisation Agency, 2004; McComas et al., 1995). Hence research such as this study which aims to examine existing communication practices in detail, and explore the effect of these practices on power relations with the aim of then moving practice forward via dissemination of findings, is supported by existing findings from previous studies.
The aim of this study will therefore be to undertake an in-depth and critical evaluation of communication practices and the effects of these practices on power relationships in the assessment process of wheelchairs and adaptive seating on disabled children and their families. It will be limited to investigating the initial assessment appointment to ensure an in-depth analysis of data is possible, and that the project remains manageable to the novice researcher. This topic area has, to date, not been addressed in the literature and it is suggested that this omission needs to be addressed.