In dealing with your child’s illness, you may hear words or terms that are confusing. Here are some helpful definitions for some of these words.
GLOSSARY
Acute condition or acute illness
A medical condition of short duration that often starts quickly and may only change the person’s ability to function for a short period of time. This is different to a chronic condition (see below).
Allied Health Professionals
Health professionals, including psychologists, physiotherapists, pharmacists, social workers, occupational therapists and speech and language therapists.
Advance Care Planning
Advance care planning is a process of discussion and reflection about goals, values and preferences for future treatment in the context of an anticipated deterioration in the child’s condition.
Advocate
A person who represents or speaks and may negotiate on behalf of a family while also empowering and supporting people to assert their way through the health care system.
Assessment
The evaluation of the development status and intervention needs of a child.
Chromosome
Chromosomes are minute particles within the cells of our bodies. Very simply, they are the building blocks which determine our individual characteristics such as eye and hair colour. Chromosomes are normally grouped together in 23 pairs (46 in all), half of which come from the mother and the other half from the father.
Diagnosis
The process of identifying a condition by its signs or symptoms using various diagnostic procedures, such as reviewing patient history, physical examination, scans, and laboratory tests. Not all illnesses have a complete diagnosis.
Early Intervention
Early intervention is the process of providing specialist support for infants and young children up to age six years who have or at risk of having a physical and/or learning developmental delay. This may include physiotherapy, occupational therapy, speech and language therapy, social work, family support worker, nursing support and psychology services.
Enteral Feeding
Enteral feeding is feeding into the stomach to promote normal growth and development. This can include oral feeding or tube feeding.
In the medical setting, the term Enteral Feeding is most often used to mean tube feeding.
Family Centred Care
A method of service delivery that recognises parents as the experts on their child’s needs; it promotes partnership between parents and the service providers and supports the family’s role in decision making about services for their child.
Fine Motor Skills
Relates to the use of the small muscles of the body such as muscles in the face, hands, feet, fingers and toes.
Gross Motor Skills
Relates to the use of the large muscles of the body such as muscles in the legs, arms and abdomen.
Individual Service Plan (ISP)
The individual service plan is a written document prepared by an interdisciplinary team in partnership with the parents describing the needs of the child and the goals of the service to be provided.
Interdisciplinary
This team approach provides a formal structure for professionals representing different fields of expertise including doctors, nurses both hospital and community based, social workers, physiotherapist, occupational therapist, speech therapist and psychologists to share information and develop goals for a joint service plan. Family input is encouraged.
Life Limiting Condition
A condition from which there is no reasonable hope of cure and from which the person is expected to die. The condition cannot be reversed by treatment. Life limiting conditions/illnesses progress quickly, and others cause slow deterioration over time rendering the child increasingly dependent on parents and carers. Life Limiting also includes life-shortening from complications that are secondary to the condition.
Life Threatening Condition
A condition that actively and continually threaten the person’s life; for which there may be considerable and effective treatment, yet cure is either unlikely or not necessarily guaranteed and/or death is inevitable. This means diseases or conditions where the likelihood of death is high.
Multi-sensory Therapy
A specifically designed environment which enables a child with special needs to enjoy a wide range of sensory experiences through vision, sound, touch, smell, and taste for therapy, learning, relaxation and fun.
Muscle Tone
Hypertonic – rigid muscle tone, tension in muscle when resting.
Hypotonia – low muscle tone, floppy baby syndrome.
Nasogastric tube feeding (NG)
A NG tube is a plastic tube inserted through the nose and it passes down into the stomach and is used for feeding.
Neurodevelopmental Delay
Neurodevelopmental Delay is failure to meet certain developmental milestones normally achieved during infancy and early childhood usually caused by organic, psychological or environmental factors. Developmental delay indicates a problem in normal development in the central nervous system.
Occupational Therapy
Occupational Therapy (OT) looks at how your child is developing the skills which are used in everyday life. This includes his/her ability to carry out self-care tasks such as eating and dressing, playing with toys and other children and as your child grows the possibility of writing and concentration skills. The assessment is done by observation of the child and by discussion with the parents. OT aims to develop fine motor, cognitive and perceptual ability, along with self-care skills.
Palliative Care
Palliative care is inter-disciplinary care that aims to improve quality of life of individuals with Life Threatening Conditions or Life Limiting Conditions seeking to reduce pain and distressing symptoms while attending to a wide variety of psychological, social and spiritual needs.
Palliative Care is patient centred and family focused; it can complement curative and life prolonging interventions from the time of diagnosis onward provided in home, hospital or hospice, while also supporting family members in bereavement.
PEG feeding tube (PEG)
PEG stands for percutaneous endoscopic gastrostomy, a procedure in which a flexible feeding tube is placed through the abdominal wall and into the stomach. PEG allows nutrition, fluids and/or medications to be put directly into the stomach, bypassing the mouth.
Physiotherapy
Most children with disability will be referred for physiotherapy; first the physiotherapist will access the child and look at his/her ability to hold their head, move, sit and crawl. The Physiotherapist will also look at balance, the way the muscles and joints work, the way the heart and lungs function and how your child responds to sensory information. They identify areas of concern and develop treatment goals and a programme to work with at home. They will support this programme with follow up appointments adjusting and modifying the programme according to your child’s needs.
Picture Exchange Communication System (PECS)
Picture exchange is used to help motivate children to request objects/food/activities if they don’t have the words to request them through speech.
Prognosis
Prognosis refers to the doctor’s expectation of how a child’s condition/disease will progress. This judgement is based on their knowledge and experience with children with similar medical conditions.
Psycho-Educational Assessment
A psycho-educational assessment is a comprehensive assessment of your child’s level of cognitive functioning (activities associated with learning and problem solving). During the assessment procedure, this may take place over several sessions and it involves a variety of verbal and non-verbal performance tasks to ascertain his/her level of ability. Arising from the findings, specific recommendations regarding the most appropriate school placement are made.
Respite care
Respite is short term care for the child to allow the carer a rest/break. Respite can be in a hospital, hospice or the home.
Speech and Language Therapy
Speech and Language Therapy (SLT) aims to help your child to develop his/her communication, eating, drinking and swallowing skills to help reach potential in this area. Early intervention is important so SLT will begin prior to your child’s first word. The SLT will access your child’s understanding, expression, how he/she manages sucking, swallowing and chewing. They will also access how your child plays with objects and people. They then provide an individual programme to work with at home.
Video fluoroscopy
A specialised x ray to assess eating, drinking and swallowing.
Any Questions?
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