Effect of Chronic Disease on Development - Paediatrics

Effect of Chronic Disease on Development

·        10 – 15 % of children have some chronic health condition. 1 – 2% are severe enough to interfere with their ability to take part in normal activities

·        Chronic illness can effect development by: 

o   Direct effect: eg deafness ® language delay

o   Effect of treatment: eg neuro-radiation

o   Indirect effect: reduced energy in cystic fibrosis

o   Social environment: sense of differentness ® withdrawal or bullying

o   Transaction: impact on parents (eg maternal depression) ® affects child‟s adaptation 

·        May lead to failure to develop independence (self control) and competence (control over their environment), leading to self-doubt or indecision. 

·        Issues to consider:

o   Burden of care: don‟t give them more helpful ideas if they‟re already over-stretched!

o   Unpredictable future: Clear idea for the parent and child of what the future might hold

o   Social/school: Watch for „vulnerable child syndrome‟, bullying, and access issues.

o   Cost: check relevant benefits received

o   Respite care: do parents need a break?  Deal with feelings of guilt and indispensability

o   Activities of daily living: the daily routine will be revealing

o   Multiple professions: check these are co-ordinated and organised around the family‟s needs

o   Psychological: consider impaired attachment, depression, stress, family dysfunction

·        Also ensure:

o   Information for child and parents

o   Access to services

o   Access to consumer groups

o   Equipment and transport needs

o   Environmental modification

o   Vocational training for an adolescent

Infants

·        Effect on parents of congenital malformation:

o   Shock, disbelief, upset, problem solving processes slowed

o   Adaptation over time 

o   Grief reaction similar to death of a child (must mourn the loss of a „normal‟ child) – but parent must also attach to the living child

·        Management:

o  Support good bond-enhancing practices before and immediately after birth:

§  Normal preparation for birth (learn about routines, processes, options, etc)

§  Time to establish rapport with paediatrician and visit NICU 

§  Long periods together in first few days and breast-feed if possible. Is any separation really necessary? 

§  Avoid criticism – a very sensitive time

§  Watch for signs poor attachment.

o  For the toddler: 

§  Watch for „vulnerable child syndrome‟: continued parental concern after child has recovered ® adverse affects on child. Problem is parents‟ expectations, not attachment. More complicated when some ongoing vigilance is required 

§  Support appropriate attitudes and plans

§  Mobilise family support

§  Remain optimistic 

§  If in hospital, use separations to reinforce that parents will return. Limited number and consistency in nursing staff

Pre-schooler

·        Social and emotional development may be limited through lack of opportunity to achieve goals in play and by limited peer interactions

·        Management:

o  Refer for early intervention, especially low socio-economic and disabled children

o  Promote normal development: separation, appropriate discipline

o  In hospital: encourage rooming in, maximum contact with families 

o  Warn parents to anticipate behavioural problems especially if hospitalisation is prolonged or frequent

Head injured child

·        Initial crisis: grieving put on hold, waiting to see if things improve, child still looks the same, swinging between hope, despair and disbelief

·        Restructuring:

o  Reassign tasks in the family

o  Move out of crisis reorganisation into long term reorganisation

o  Inclusion of outside help into family

o  Appropriate time for husband/wife/other children

o  Time for self

·        Grieving:

o  Allow for grief and acknowledge the loss

o  Avoid dichotomy of one person (eg mother) taking hope position and others despair

o  Promote openness.  Devastation of silence

o  Denial can also be a coping mechanism

·        Develop an acceptance of a new identity through the crisis:

o  Seeing how the child is different

o  Finding positives in this new identity and helping the family value these

o  Achieve a sense of movement through the crisis.  Mark positives and achievements of the family

·        Encouraging compliance:

o  For the highly compliant: teaching, directions 

o  For the non-compliant (those who respond „yes – but….‟): general indirect messages, metaphor/story telling 

·        Subsequent learning disabilities: may have problems with learning from then on – but may not show up till those skills are needed (eg trouble reading when they start school)