As a nursing student you are on a placement with the health visitor (HV). You have met Joanna, her son Simon aged 5 and her daughter Isabel aged 2. The HV has arranged to undertake Isabel’s health and development review. Isabel was diagnosed with Rett’s syndrome two months ago and is now having epileptic seizures and is proving very difficult to feed. Joanna admits to being concerned about the impact Isabel is having on the family and that she also feels lonely. Joanna also revealed that she finds Isabel’s seizures absolutely terrifying. As you leave, Joanna argues with the HV that they – the professionals – must have got it wrong: Isabel will get better.

• Consider the psychosocial impact that a child with complex needs can have on family life.

Answer: A balanced answer should consider that the psychosocial impact of Isabel’s condition on family life can have both positive and/or negative consequences.

Positive:

• It can broaden horizons
• Increase the family’s perceptions of their strength and cohesion as a unit
• Encourage them to join in community or school activities and perhaps reaffirm their religious belief
• Approach/discussion of short breaks for Isabel/Joanna and Simon can spend time together

Negative:

• Physical health (disturbed sleep, rest, not eating adequately, etc.)
• Mental health (emotional demands)
• Allocation of time spent caring for the child with complex needs/ little time for other children/partner
• Financial costs, e.g. one or both parents having to give up work
• Restrictions on the availability of childcare and employment opportunities
• Increased likelihood of marital breakdown

Further reading:

Bach, S. and Grant, A. (2015) Communication & Interpersonal skills in Nursing, 3^rd edn. Los Angeles, London, New Delhi, Singapore, Washington DC, Boston: Sage.

Reichman, N., Corman, H. and Noonan, K. (2008) ‘Impact of child disability on the family’, Journal of Maternal & Child Health, 12(6) :679–83.  Available at: www.medscape.com/viewarticle/581577 (accessed 2 August 2016).

• What professional skills do you think that the HV can use to establish a partnership with Joanna and her family?

Answer: Facilitate therapeutic engagement and empower Joanna using interpersonal skills including the use of:

• Empathy

• Cross cultural sensitivity
• Advanced verbal and non-verbal communication skills
• Encourage dialogue using Grice’s conversational maxims www.sas.upenn.edu/~haroldfs/dravling/grice.html and YouTube  www.youtube.com/watch?v=HcR9KYLuIGA
• Explain professional boundaries of confidentiality
• Provide relevant, understandable and proven information
• Introduce Joanna to the local resources such as Sure Start or early learning intervention services
• Encourage Joanna to access the specialist Rett support group.

Further reading:

Baillie, L. and Black, S. (2014) Professional Values in Nursing. Florida, New York, Abingdon Oxon: CRC Press.

Brotherton, G., Davies, H. and Mcgillivray (eds) (2010) Working With Children, Young People and Families. Los Angeles, London, New Delhi, Singapore, Washington DC, Boston: Sage.

• How can the HV help Joanna manage both Isabel’s seizures and her own anxiety about the seizures?

Answer: The answer should include encouraging Joanna to identify her concerns and fears.

The HV should provide Joanna with information on how to physically manage Isabel’s seizures including exploring identifying factors that may trigger seizures. The HV could provide a range of online resources that provide information and support, e.g.:

• Young Epilepsy: www.youngepilepsy.org.uk    
• aboutkidshealth: www.aboutkidshealth.ca/
• The Epilepsy Society: www.epilepsysociety.org.uk/  

A range of resources are available to help Joanna monitor Isabel during the day or night when she is not in her immediate vicinity – the HV should provide Joanna with the details. The HV should liaise with Joanna and her GP/Paediatrician to refer to the specialist nursing service for epilepsy and co-ordinate the care provision.           

Further reading:

Coyne, I., Neill, F. and Timmins, F. (eds) (2010) Clinical Skills in Children’s Nursing. Oxford University Press: Oxford. Ch. 10.

Richardson, J. and Glasper, A.E. (eds) (2010) A Textbook of Children’s & Young Peoples Nursing, 2nd edn. London: Churchill Livingstone Elsevier.

The UK has the highest teenage pregnancy and highest underage drinking rate in Western Europe (see www.fpa.org.uk/news/uk-has-highest-teenage-birth-rates-western-europe although teenage pregnancy figures are beginning to fall – see www.bbc.co.uk/news/health-35761826 and www.brook.org.uk/data/FINAL_factsheet2_2015_Teenage_conceptions_Oct_2015.pdf) 

Do you think that the Government should take action to diminish the risks of foetal alcohol syndrome occurring and if so, how should public health agencies approach this? Discuss.

Answer:

• The Government in 2010 published the Teenage Pregnancy Strategy: Beyond 2010 (www.education.gov.uk/consultations/downloadableDocs/4287_Teenage%20pregnancy%20strategy_aw8.pdf)  to ensure that children and young people receive the information, advice and support they need to experience good sexual health and access and know how to use contraception so they can avoid unplanned pregnancies and sexually transmitted infections (STIs). The Scottish strategy (2013) went further, suggesting addressing the needs of young parents – see www.parliament.scot/S4_HealthandSportCommittee/Inquiries/Minister_for_Pu.... The website at: http://cdn.basw.co.uk/upload/basw_104235-7.pdf  explains the challenges and opportunities facing councils to tackle teenage pregnancy and reduce health inequalities.
• It is crucial that all agencies (Health, Education, Local Authority and the Voluntary/Independent Sector) work together to raise awareness of drinking alcohol whilst pregnant (both in schools, media etc.) and ensure that understandable, cross cultural, multilingual and gender specific accessible (electronic) resources are freely available.
• Brook firmly believes that ‘if we educate young people they will develop and better manage their personal wellbeing’. Brook aims include improving health outcomes for young people, play a central role in supporting/educating young people’s sexual health and wellbeing in partnership with schools and community groups and provide a range of face-to-face and online training. See www.brook.org.uk/your-life
• Drinking alcohol during pregnancy can damage the unborn baby. Sometimes this can result in mental and physical problems in the baby, called foetal alcohol syndrome (FASD) – www.nhs.uk/conditions/foetal-alcohol-syndrome/Pages/Introduction.aspx 
• Although alcohol can affect the development of all cells and organs, the brain is particularly vulnerable to the effects of alcohol exposure – www.nofas-uk.org/?cat=14 
• Read this excellent fact sheet to explain FASD – www.nofas-uk.org/WP/wp-content/uploads/2014/08/NOFAS-Factsheets-2016.pdf by the National Organisation for Foetal Alcohol Syndrome UK which will assist you to understand more about FASD
• Consider how you could access local support groups and resources for FASD
• Research (and access) local specialists – these could be, for example, a specialist midwife, health visitor or medical consultant

References, further reading and resources:

BBC News (2016) ‘Teen pregnancy rate continues to fall, ONS figures show’, BBC News Online, 9 March. Available at:  www.bbc.co.uk/news/health-35761826

Brook (2015) Teenage Conceptions: Statistics and Trends.  Available at: www.brook.org.uk/data/FINAL_factsheet2_2015_Teenage_conceptions_Oct_2015.pdf    

Great Britain Department for Children, Schools and Families and The Department of Health (2010) Teenage Pregnancy Strategy: Beyond 2010.  Available at: www.education.gov.uk/consultations/downloadableDocs/4287_Teenage%20pregnancy%20strategy_aw8.pdf

Great Britain Scottish Parliament (2013) Response to Teenage Pregnancy Enquiry. Available at: www.parliament.scot/S4_HealthandSportCommittee/Inquiries/Minister_for_Public_Health_-_Response_to_Teenage_Pregnancy_Enquiry.pdf 

Local Government Association (2013) Tackling Teenage Pregnancy: Local Government’s New Public Health Role. Available at: http://cdn.basw.co.uk/upload/basw_104235-7.pdf

 National Organisation for Foetal Alcohol Syndrome – UK (2018) FASD Characteristics. Available at: http://www.nofas-uk.org/?cat=14

  National Organisation for Foetal Alcohol Syndrome – UK (n.d.) Foetal Alcohol Spectrum Disorder (FASD): Information for Parents, Carers and Professionals. Available at: www.nofas-uk.org/WP/wp-content/uploads/2014/08/NOFAS-Factsheets-2016.pdf

 NHS Choices (2017) Foetal Alcohol Syndrome. Available at: atwww.nhs.uk/conditions/foetal-alcohol-syndrome/Pages/Introduction.aspx

What communication skills do you need to effectively communicate with a child who is on the autistic spectrum? Where can you seek assistance in refining these?

Answer: A balanced response should consider what autistic spectrum is and how this may affect the child. Consideration should be given as to ways a child who is on the autistic spectrum may communicate and sources of support and education. 

Autistic spectrum disorder and communication

• Autism spectrum disorder (ASD) affects social interaction, communication, interests and behaviour. In children the symptoms are present before 3 years of age, although a diagnosis can sometimes be made after the age of 3. About 1 in every 100 people in the UK has ASD. More boys are diagnosed than girls. Speech and language therapy, occupational therapy, educational support, plus a number of other interventions are available to help children and parents (www.nhs.uk/conditions/Autistic-spectrum-disorder/Pages/Introduction.aspx) 
• Review the Autism Quality standard published by the National Institute for Health and Care Excellence (NICE) in January 2014 (www.nice.org.uk/guidance/qs51) and see how this links to the education, health and care (EHC) plan (www.gov.uk/children-with-special-educational-needs/extra-SEN-help) 
• The National Autistic Society (www.autism.org.uk/), SCOPE (www.scope.org.uk/support/families/diagnosis/autism) and Mencap (www.mencap.org.uk/learning-disability-explained/conditions/autism-and-aspergers-syndrome) have excellent, reputable resources to help you to explore the multi facets of autism.  
• Communication is the most central of all everyday skills. If communication is not effective, we are unable to make ourselves, thoughts or desires known. Most people with ASD have difficulty interacting with others which might include how they respond to others, initiating interactions or using interaction to show people things or to be sociable/build a rapport. Understanding and relating to other people, and taking part in everyday family, school, work and social life, can be harder. Children can also have language delay. See: www.autism.org.uk/about/communication/communicating.aspx. Therefore, other methods of communication need to be established.
• SCOPE have a ten point tip on how to communicate with a person who has autism (www.scope.org.uk/support/families/communication)  including a link to tips suggested by members of their online community about non-verbal communication (www.scope.org.uk/support/tips/communication/non-verbal)
• Although American in origin, Boyd, T. et al (2015) (http://journals.sagepub.com/doi/pdf/10.1177/1053451215577476) discusses the increase of mobile technology (i.e. the iPad) as an opportunity for children with ASD  to encourage, enhance and excite them to develop communication systems.
• Mencap have some useful tips and suggestions on how to communicate with people with a learning disability – see www.mencap.org.uk/learning-disability-explained/communicating-people-learning-disability
• YouTube has some good links:

• Autism, Social Communication, Intensive Interaction www.youtube.com/watch?v=DaD5Vn2OoLU 
• Can you make it to the end? (sensory overload) www.youtube.com/watch?v=Lr4_dOorquQ 
• A Southampton Group Teach Autistic Children Key Skills www.youtube.com/watch?v=uKMrvQDbT-k – this is an excellent introduction and has some useful insights

There are crucial keys to communication with children who have ASD:

• Observe how the child communicates. Look at each other’s face and their facial expressions. A child with ADS may not pick up/understand non-verbal cues; you may need to draw attention to these.
• Take time and slow down – don’t rush and help the child to understand what is going on and why. Speak and communicate at a desirable pace. Limit the amount of information given and use gestures/visual cues. Try to use words that can be understood and do not use jargon. Do not ‘sensory overload!!’
• Work together and try not to (always) direct. Offer choices.
• Encourage the child to ‘request’, i.e. for a toy, food, etc. Think about activities that include two (or more) people.
• Mimicking and copying behaviours will reinforce the child
• Highlight what is achieved – make a positive connection when a child with ASD indicates they (may) understand. 

Source: taken from The National Autistic Society (www.autism.org.uk/about/communication/communicating.aspx)   

References, further reading and resources:

Boyd, T., Hart Barnett, J.E. and More, C.M. (2015) ‘Evaluating iPad technology for enhancing communication skills of children with autism spectrum disorders’, Intervention in School and Clinic, 51(1). Available at: http://journals.sagepub.com/doi/pdf/10.1177/1053451215577476 

Gov.UK (2017) The Education, Health and Care (EHC) Plan. Available at: www.gov.uk/children-with-special-educational-needs/extra-SEN-help 

Mencap (n.d.) Autism and Asperger’s Syndrome. Available at: www.mencap.org.uk/learning-disability-explained/conditions/autism-and-aspergers-syndrome 

Mencap (n.d.) Communicating with People with a Learning Disability. Available at: www.mencap.org.uk/learning-disability-explained/communicating-people-learning-disability  

The National Autistic Society at www.autism.org.uk/  

The National Autistic Society (2015) Communicating and Interacting. Available at: www.autism.org.uk/about/communication/communicating.aspx

National Institute for Health and Care Excellence (2014) The Autism Quality Standard. Available at:  www.nice.org.uk/guidance/qs51 

NHS Choices (2016) Autism Spectrum Disorder (ASD). Available at: www.nhs.uk/conditions/Autistic-spectrum-disorder/Pages/Introduction.aspx  

SCOPE (2017) Autistic Spectrum Disorder. Available at: www.scope.org.uk/support/families/diagnosis/autism 

SCOPE (2017) Communication. Available at: www.scope.org.uk/support/families/communication 

SCOPE (2017) Non-verbal Communication. Available at: www.scope.org.uk/support/tips/communication/non-verbal 

Feeding children with cerebral palsy orally may encourage oral motor function, including language development skills. Enteral feeding may, however, be more effective in providing nutrition and hydration. Approaches to risk management for minimising the risk of aspiration is a key determinant in reaching a decision to provide an enteral intervention. However, evidence suggests that this is not always beneficial to family life, and the debate continues about giving children the opportunity for oral taste and the social aspects of feeding experiences.

• How can children’s nurses help empower the child and their family to make difficult choices that involve discussions about risk management in this situation?

Answer: Look at these results: www.evidence.nhs.uk/Search?q=PEG+feeding+in+children

Ravi is currently on a children’s ward whilst essential surgery is carried out to improve his bilateral cavorous feet. Ravi finds the hospital environment very difficult. Ravi has both severe learning disabilities and an autistic spectrum disorder. Ravi shouts repetitively, slaps his face and furniture, then laughs loudly at the noise he makes. Ravi is constantly active, climbing over the side of his bed. When staff attempt to return Ravi to his bed he screams, bites his arm and slaps his head. Ravi’s mother suggests that the staff try tying him into the bed by his legs as this is what she does at home.

• What might be the impact of Ravi’s behaviour on the other children and parents in the ward?

Answer:

• The children may become distressed
• The children may become provocative
• The children may attempt to imitate Ravi’s behaviour
• Both the other children and their families may be frightened of Ravi

• Why may children display enhanced problem behaviours in the clinical environment?

Answer:

• Children may be frightened by the unfamiliar environment, clinical procedures and people around them
• Their level of pain and tolerance of pain may be difficult to communicate
• They may be experiencing sensory overstimulation
• They may find the noise levels, lighting, the heightened activity and unfamiliar sights of people and equipment, overwhelming

• Suggest strategies that you could use to communicate with Ravi.

Answer: Please see Learning Activity 36.3 below for ideas. In addition, an excellent resource is available online – Meeting Needs and Reducing Distress Guidance on the Prevention and Management of Clinically Related Challenging Behaviour in NHS Settings. Available at: www.nhsbsa.nhs.uk/Documents/SecurityManagement/Meeting_needs_and_reducing_distress.pdf

• Practice and learn eight Makaton signs that you consider essential to making a child feel reassured in an acute hospital setting.

Answer: See:  www.makaton.org/; www.youtube.com/watch?v=7RAm90sL1g4

• Compile a list of questions that you consider essential to include in a health passport for a young child with PMLD or ASD

Answer: Students are encouraged to check out their suggestions by utilising existing resources ()www.nhs.uk./Livewell?Childrenwithalearningdisability/Pages/Going-into-hospital-with-learning-disability.aspx and the acute websites linked to their practice areas.

Look at PECS (www.nationalautismresources.com/the-picture-exchange-communication-system-pecs/),  an excellent resource and practically helpful when communicating with children who have ASD.

• How could you reassure a young child who is on the autistic spectrum and does not like having people in close proximity or being touched?

Answer: Students should consider the impact of the environment. Being on a busy ward, or in a corridor, waiting area, etc. may result in excessive environmental stimulation. Providing a quiet, more private area preferably with room to safely roam may have the desired impact.

 Communication should be based on the cues from the health passport. Students should consider that using body language, facial expressions and touch may be inappropriate. The language used should be simple and not open to misinterpretation, questioning should be kept to the minimum. Personal space should be guarded. Pictures may help.

• Explore how can ‘Books Beyond Words’ assist you to communicate with children (or their parents) who have a learning disability

Answer: Books Beyond Words are for people who find pictures easier to understand than words. Also available as an app (https://booksbeyondwords.co.uk/)  and has a selection of books for children with learning disabilities (https://booksbeyondwords.co.uk/children-with-learning-disabilities)

Watch the YouTube clip which explains how Books Beyond Words can assist you to communicate (and explain) by using pictures. You build and adapt the story to the children that you are working with (www.youtube.com/watch?v=LqF2N-8puaM)

Further reading:

Scarpinato, N., Bradley, J., Kurbjun, K., Bateman, X., Holtzer, B. and Ely, B. (2010) ‘Caring for the child with an autistic spectrum disorder in the acute setting’, Journal for Specialists in Paediatric Nursing, 15(3): 244–54.  Available at:  www.ncbi.nlm.nih.gov/pubmed/20618639 (accessed 31 July 2016).