The family also had a strong support network of family including Grandparents, Aunts and Uncles.
It had been agreed by Health and Social Services that planned short break support/respite provided by a resource that can meet Jonny’s health and social needs would be beneficial to give his parents a break from their intensive supporting caring role therefore enabling them to meet Jonny’s needs in the long term. This break also gave Helen and John the opportunity to spent quality time with their eldest son Peter.
Jonny’s health needs were identified by following the Activities of Daily Living Assessment model devised by Roper, Logan and Tierney (2002). Twelve activities were specified that make up a persons daily life regardless of a persons age, sex, and whether or not the person is healthy thus making it an ideal model for this practice placement where children have such complex health needs. The twelve activities identified are as follows;
1. Maintaining a Safe Environment
2. Communicating
3. Breathing
4. Eating and Drinking
5. Eliminating.
6. Personal Cleansing and Dressing
7. Controlling Body Temperature.
8. Mobilizing.
9. Working and Playing
10. Expressing Sexuality
11. Sleeping
12. Dying
Although this model was used for the holistic assessment it should be acknowledged that The Common Assessment Framework (CAF) (Department of Health 2005) could also have been used which assesses parenting capacity, family and environmental factors and child’s developmental needs.
The specific health need that shall be analysed is communication and the impact this has upon Jonny’s overall development. Due to Jonny’s neurological conditions he does not have any understanding therefore cannot communicate verbally. According to Brooks and Heath (1985) communication is the process by which information, meanings and feeling are shared by persons through the exchange of verbal and non verbal messages. Latham and Miles (1997) postulated that communication is not only central to the curriculum for children with severe and profound learning difficulties, it is central to their quality of life. The ability to initiate and receive communicative interactions is fundamental to their development.
As Jonny’s neurological condition means he cannot communicate verbally, he can often communicate his likes and dislikes through non-verbal communication such as body language, touch, gestures and facial expressions. To access the impact of his lack of communication on his overall development the heading of Child’s Developmental Needs from CAF will be used. Jonny’s health needs will have been effected as he cannot communicate when in pain or unwell. His education is impaired as he does not have the capacity to learn or communicate verbally although he enjoys the stimulation of being read to, touched and played with. Jonny has always recognised and responded well to his mother and father thus confirming Bowlby’s attachment theory (1969). Jonny has no-self care needs therefore is totally dependant on others.
Jonny’s lack of verbal communication poses a major problem for health care professionals and his parents when he is distressed or in discomfort for example crying, shouting, becomes withdrawn and quiet, agitated or is generally not himself as it is difficult to define why i.e. if he’s in pain.
Because of this very reason Northgate and Prudhoe NHS Trust Palliate Care Team and St Oswald’s Hospice have devised a unique tool for assessing distress in patients who have severe communication problems entitled Disability Distress Assessment Tool (DisDAT) (2005) (Appendix 1).
“DISDAT is intended to help identity distress cues in people who because of cognitive impairment or physical illness have severely limited communication”
A study conducted by Regnard C et al (2003) concluded that “participants found it difficult to define distress and there were several different descriptions of what distress ‘looked like’ across the sample. 24% of respondents defined distress within the physical domain, for example, illness and physical discomfort. However, many participants recognised that there were several different causes of distress, with 76% of respondents describing a “spectrum” of distress, which included physical and emotional causes”. Common indicators or distress are as follows, shouting, heavy breathing, increased eye movements, eye contact withdrawn, ‘scrunched’ face, grinding teeth, rigid body and appearing restless. The parent or carer (who knows child very well) in this case mother Helen, filled out the DisDAT form with baseline observations of Jonny’s appearance and behaviour when content in contrast to when he is distressed. Jonny’s facial appearance when content is smiling, bright eyed; his tongue/jaw is relaxed and skin rosy. This contrasts with his appearance when distress when he cries and his skin is pale and clammy. Vocally when he is content he gurgles, and makes noise and when distressed he cries. His habits and mannerisms when content consist of him rolling around, smiling, likes to be cuddles in contrast to when distressed he is agitated, withdrawn and crying. Finally as he has Hypotonia his posture is ‘floppy’ when both content and distressed but he enjoys contact with people and strokes with his hands. There is also a section for any known triggers of distress.
This tool is designed to give anyone who does not know Jonny indicators of how to recognise distress as well as working in conjunction with body observations and clinical judgement. Family members and health professionals recognised the importance of DisDAT with 72.7% finding the tool either useful or very useful.
The Royal College of Speech and Language Therapists (2004) state that evidence shows that children with speech, language and communication needs have real difficulties developing reading and writing skills therefore early intervention is crucial to ensure that they are not at a disadvantage when they enter school.
The Department of Health has implemented two documents: ‘Short Breaks for Disabled Children and their Families’ (May 2007) and ‘Disability and Palliative Care’ (February 2008) Aiming High for Disabled Children. These documents reinforce the importance of early intervention in relation to communication problems and working in partnership with families.
Every Disabled Child Matters (2006) document states that families with disabled children have the right to have ordinary lives and disabled children matter as much as all other children and specifically every extended school and children’s centre should deliver a full range of services and resources to disabled children and are distributed fairly and transparently. This can be perceived as communication services for disabled children that are equally accessible for example speech and language, learning skills for future independence, music and play therapy and opportunities to mix and form relationships with other disabled children. The Children’s National Service Framework sets national standards for health and social services to improve outcomes for children with disabilities and some with complex needs. ‘Including me’ document illustrates how local authorities have developed effective policies for children who have complex health needs in improving health care including communication services available.
The author has highlighted the importance of non-verbal communication for disabled children and how to observe them. For example appearance, vocalisation, habits and mannerisms and posture and clinical observations. (Regnard et al.) The implications for nursing practice are that local and national trends can impact on every aspect of a disabled child’s life when assessing the child and improving services and resources available and making them more accessible for families. These will be constantly updated and implemented constantly throughout my career as a children’s nurse and therefore as outlined in NMC Professional Code of Conduct a registered nurse has the responsibility to keep knowledge and skills up-to-date.
References
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Disability Distress Assessent Tool (DISDAT) (2005) Northgate and Prudhoe NHS Trust and St Oswald’s Hospice
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