The picture exchange communication system (PECS) has been instrumental in enabling Shelly’s to communicate her choice and has resolved some disruptive behaviours experienced around snack time and free play. Jones et al. (1995) stated the success of AAC interventions is highly dependant on the family’s involvement and their shared commitment to the goals of the interventions. This is an area that needs to be fully explored with Shelly’s family as the use of PECS is not consistently used in her home environment. This may raise issues for the family with regards further training or involvement in the school environment to gain a more meaningful understanding of its application.
The importance of the environment in which challenging or disruptive behaviours occur is an important insight into the difficulties an individual may be experiencing. Barol (1996) concludes that in over three quarters of the situations where she has been consulted to assess a disruptive individual’s behaviour including self -injury, a persons behaviour changes for the better when their needs are met and this may mean adapting their environment to meet their needs to facilitate this. Shelly self-injures on a daily basis and a cycle of medication, restraint and removal becomes the daily cycle in which all key professionals play an active role.
Jones et al (2004) considers that oppression and abuse are the context in which people with learning disabilities self-harm, this has been given credence as a possible explanation in the general population on self-harm and yet there is very little literature regarding this subject for people with learning disabilities. Self-injury can be defined as the “repeated, self-inflicted, non-accidental injury, producing bleeding or other temporary or permanent tissue damage (Schneider et al 1996). There is a distinction made by some authors between self-harm (used in mental health settings) and self -injury (used in learning disabilities services), self injury tends to include cutting, burning and carving behaviours (Favazza 1996). Whereas head-banging, biting, scratching, hair pulling and pinching are seen as self-injury.
The distinctions between the two labels is contested by several authors and it is suggested that it is far ‘less recognised’ that learning disabled individuals may self-injure for similar reasons to those attributed to non-learning disabled individuals (see appendix Fig 1.) It could be argued that the focus on the label detracts from the joint frustrations that all children who engage in these activities are screaming for, ‘understanding’. Non- learning disabled and learning disabled children experience common themes of powerlessness and feelings of vulnerability. Babiker and Arnold (1997) suggests that both non-learning disabled children and learning disabled children could relate to feelings of powerlessness, rejection, abuse and vulnerability.
Emerson and Walker (1990) found that two thirds of people with learning disabilities used self-injury as they had no expressive form of language When researching self-injury it becomes quite apparent that the devaluing labels used to describe these behaviours indicates society’s perception of it being ‘unacceptable’, as individuals are reduced and labelled by their self-harming behaviour. In recent years there has been development in recognition of the multi-factorial basis of self-injury with a desire to provide humane and practical interventions.
Emerson (2001) suggests that the behavioural approach is the most influential strategy for reducing self-injury in individuals with learning disabilities today. Whilst there are a variety of behavioural approaches, restraint is still a common physical intervention used with children with learning disabilities. The Human Rights Act (1998) sets out important principles to protect individuals from abuse by the state or people working for these organisations. The schools and health and social care services owe a duty of care to their pupils. Therefore the importance of planned physical interventions and risk assessments need to be used in a holistic manner with the minimum of reasonable force.
Cultural Needs
Shelly’s parents found it very difficult to come to terms with having a disabled daughter and have disclosed cultural disapproval in their wider community (although she is well supported within the family). It is not unknown for native South Asian families who bear a disabled child to leave that child to die; this incidence is further increased if a family has a disabled girl (ESCAP 1995). Native South Asian disabled women face discrimination from birth as they are seen as an unaffordable burden in a culture in which children need to contribute to the family income.
Sunil Deepak (2000) suggests that some traditional South Asian families may have a tendency to conceal a daughter with a disability to enhance the chance of subsequent daughters securing an offer of marriage. Within the South Asian culture is not uncommon for marriages to be arranged with close family members; the incidence of consanguineous marriages is common among ethnic groups and reflects a more traditional way of life. Shelly’s parents have a consanguineous marriage and do not accept the genetic explanation of a higher predisposition to giving birth to a disabled child. The NMC code of Professional Conduct specifies that nurses must ‘promote and protect the interests and dignity of patients and clients’ irrespective of ‘race’, culture and religious beliefs (NMC 2004).
Professionals need to adopt a sensitive non-judgmental approach when interacting with families to reflect respect for traditional values and beliefs. Husband and Hoffman (2004) suggest that it is helpful to become familiar with the clients cultural orientation to understand their position in the larger context of their social environment. This needs to be explored in the wider context of Shelly’s home environment the cultural impact of being a disabled child and her access to services. In the Department of Health’s ‘The Valuing People’ (DOH 2001b) it states that minority ethnic communities face substantial equalities and discrimination in employment, education, health and social services’.
In addition to this people with learning disabilities from ethnic groups experience simultaneous disadvantage in relation to race, impairment and for women, gender. The importance of recognising, valuing and respecting cultures that have different traditions and values is an integral component when developing partnerships with children and families; it is an essential component of transcultural nursing (Wilkins 1993).
Discussion/Conclusion
The AAC communication strategies involved in Shelly’s care correspond well with supporting literature in this area and the effects they have had on positively reducing some aspects of her disruptive behaviour, by improving communication. However supporting literature highlights the need to involve Shelly’s parents to ensure its success, the AAC systems are deeply rooted in the positive impact of parental participation. Shelly’s behaviour needs to be assessed further in relation to the environment she is in, as the literature would seem to suggest that changing or adapting her environment may have a positive effect on her behaviour.
It may be necessary to assess her behaviour more closely to observe antecedent behaviours to enable changes to her responses. Shelly’s cultural identity should be explored within the context of understanding the social world in which she lives. As her family have found it difficult coming to terms with her disability this would appear to substantiate some of the views of Sunil Deepak (2000) that some traditional South Asian families may feel shame if they have a disabled child.
These feelings need to be explored within the context of family life and the effect on Shelly’s feelings of self worth and value. This should form an active dialogue in her family centred-care. It is important to acknowledge that of the non-learning disabled children that called child line, family issues were highlighted as a significant factor for self-harming with Bullying being the highest factor (see appendix Fig 1).
In conclusion the literature around self-injury and learning disabled children is under represented and it emphasises the need for more research in this area. The importance of cultural identity needs to be entwined in the holistic assessment and care planning to ensure the child’s needs are understood and met. It is of paramount importance that policy, training and guidance on restraint in behaviour management are in place, as a safeguard for children with learning disabilities. It might be argued the literature on self-harm on non-learning disabled children offers an important foundation in which to develop tools of investigation into the different needs of disabled children, as they are children ‘first and foremost’.
References
BAROL, B. (1996)The Pennsylvania Journal on Positive Approaches. Vol. 1. Number 1. pp 1-4. BABIKER, G.(1997) ARNOLD, L. (1997) The Language of Injury: comprehending self mutilation. The British Psychological Society. Leicester.