Using the functional independence measure to assess adults with cerebral palsy: an exploratory report

The Functional Independence Measure (FIM) was selected as an assessment to be conducted annually with adults attending The Spastic Centre of New South Wales (SCNSW), Australia, an organisation specifically for individuals with cerebral palsy. Service-providers were trained in the administration of the FIM and in the use of a customised data base. Initially 173 adults with cerebral palsy were assessed, this number included 135 individuals in supported and open employment. The FIM is currently being used to assess all adults attending the SCNSW as part of an annual review. The data from this ongoing assessment procedure will assist in lobbying government to ensure that individuals have access to the attendant care services that they require to function optimally in the community and will provide a longitudinal data base for study of some of the effects of the ageing process on individuals with cerebral palsy. A case study is presented which illustrates the use of the FIM with a couple who live independently in the community.

Adults with cerebral palsy: what's happening?

A total of 279 adults with cerebral palsy from across Australia responded to a survey which sought information about their health, modes of communication, access to information and perception of their own ageing process. Results indicated that 77% of the respondents believed that their physical condition was changing and 78% were taking medication. All but 11% indicated that the ageing process was having some effect on their lifestyle. A total of 22% had made retirement plans. Respondents discussed their health concerns with their family or attendants and 57% judged their general practitioner knowledgeable about cerebral palsy. The implications of the results for future service planning and delivery are considered.

Feasibility of trialling cord blood stem cell treatments for cerebral palsy in Australia

Umbilical cord blood may have therapeutic benefit in children with cerebral palsy (CP), but further studies are required. On first appearance it seems that Australia is well placed for such a trial because we have excellence in CP research backed by extensive CP registers, and both public and private cord blood banks. We aimed to examine the possibilities of conducting a trial of autologous umbilical cord blood cells (UCBCs) as a treatment for children with CP in Australia.

Exploring the later life relationship between adults with cerebral palsy and their non-disabled siblings

 Purpose: Adults with moderate or severe cerebral palsy often require significant lifetime support from family and formal services. The aim of this study was to use a life course approach to explore how previous life experiences impact on the later life relationships of people with moderate to severe cerebral palsy aged 40 years and over and their non-disabled siblings. Method: Twelve adults with moderate to severe cerebral palsy and 16 of their non-disabled siblings were interviewed twice to explore their relationships. Constructivist grounded theory method was used to analyse the data. Results: Four themes were identified as important in understanding these later life sibling relationships: sharing childhood experiences, contact in adulthood, diminishing parental role and increasing support needs. Conclusions: The life course approach indicated that siblings' growing up together was important for the development and maintenance of emotional closeness later in life. Emotional closeness and familial obligation were important factors in motivating siblings with and without cerebral palsy to maintain or re-establish contact with each other in adulthood. Maintenance of sibling relationships in later life is dependent on health, proximity and the ability to keep in contact with each other.Implications for RehabilitationAs adults with severe cerebral palsy live longer, their relationships with non-disabled siblings often take on increased importance and particularly as their parents may be no longer able to provide support.Service providers have a role in helping ageing siblings with and without disability to maintain and build their relationships, for example, by supporting geographically distant siblings to keep in touch.Service providers have a role in supporting the person with a disability and their siblings to make plans for the future. © 2014 Informa UK Ltd.

Minimising impairment: protocol for a multicentre randomised controlled trial of upper limb orthoses for children with cerebral palsy

BACKGROUND: Upper limb orthoses are frequently prescribed for children with cerebral palsy (CP) who have muscle overactivity predominantly due to spasticity, with little evidence of long-term effectiveness. Clinical consensus is that orthoses help to preserve range of movement: nevertheless, they can be complex to construct, expensive, uncomfortable and require commitment from parents and children to wear. This protocol paper describes a randomised controlled trial to evaluate whether long-term use of rigid wrist/hand orthoses (WHO) in children with CP, combined with usual multidisciplinary care, can prevent or reduce musculoskeletal impairments, including muscle stiffness/tone and loss of movement range, compared to usual multidisciplinary care alone.

METHODS/DESIGN: This pragmatic, multicentre, assessor-blinded randomised controlled trial with economic analysis will recruit 194 children with CP, aged 5-15 years, who present with flexor muscle stiffness of the wrist and/or fingers/thumb (Modified Ashworth Scale score ≥1). Children, recruited from treatment centres in Victoria, New South Wales and Western Australia, will be randomised to groups (1:1 allocation) using concealed procedures. All children will receive care typically provided by their treating organisation. The treatment group will receive a custom-made serially adjustable rigid WHO, prescribed for 6 h nightly (or daily) to wear for 3 years. An application developed for mobile devices will monitor WHO wearing time and adverse events. The control group will not receive a WHO, and will cease wearing one if previously prescribed. Outcomes will be measured 6 monthly over a period of 3 years. The primary outcome is passive range of wrist extension, measured with fingers extended using a goniometer at 3 years. Secondary outcomes include muscle stiffness, spasticity, pain, grip strength and hand deformity. Activity, participation, quality of life, cost and cost-effectiveness will also be assessed.

DISCUSSION: This study will provide evidence to inform clinicians, services, funding agencies and parents/carers of children with CP whether the provision of a rigid WHO to reduce upper limb impairment, in combination with usual multidisciplinary care, is worth the effort and costs.

Communication changes experienced by adults with cerebral palsy as they age

PURPOSE: Adults with cerebral palsy (CP) experience multiple, functional changes as they age, including changes to communication modes and methods that enable development and maintenance of relationships, communicative participation and quality-of-life. Little is known about the nature of communication changes experienced by this group. The aim of this study was to better understand how adults with CP experience changes in their communication abilities as they age and the subsequent psychosocial impact.

METHOD: Twenty adults with cerebral palsy aged 40-72 years with complex communication needs (CCN) participated in a series of in-depth interviews, framing their experiences of loss and grief throughout their lives. The impact of changing communication abilities emerged as an important area of focus. Data were analysed using constructivist grounded theory methodology.

RESULT: Themes arising from the participants' perceptions of their communication included experiencing communication change as a loss with subsequent impact on self-concept; and how communication is integral to the process of managing losses associated with older age.

CONCLUSION: Implications for speech-language pathologists working with older people with cerebral palsy and CCN include the need to understand the psychosocial impact of communication changes on social interaction, relationships and communicative participation. It is important to promote positive and meaningful communication options that maintain a coherent sense of self in addition to promoting functional communication skills and communicative participation.