Illness Behaviour The Sick Role: Developmental Perspectives of Child Family Understanding Attributions Regarding Illn

1. Illness Behaviour & The Sick Role: Developmental Perspectives of Child & Family Understanding & Attributions Regarding Illness Jeremy Turk Section of Child & Adolescent Mental Health, Division of Clinical Developmental Sciences, St. George�s, University of London & Child & Adolescent Mental Health Learning Disability Service, South West London & St. George�s Mental Health NHS Trust

2. Illness Behaviour Illness behaviour refers to those behaviours that individuals engage in once they believe that they are ill. Illness Behaviour Research Group Illness behaviour is an active rather than passive process that involves interpreting symptoms, evaluating possible responses and, finally, deciding on whether to try to alleviate those symptoms or simply to ignore them. Harding & Taylor, 2002

3. Harding & Taylor, 2002 Illness behaviour: is influenced by the individual�s interpretations of an appropriate response to symptoms pre-existing belief systems determined culturally & experientially influenced by dialogue with others & societal norms & values may be initiated by one person on behalf of another � the �lay referral system�

4. �It is not the symptoms themselves that are significant in comprehending illness behaviour, but the way in which they are defined.�

5. The Sick Role A form of behaviour deemed appropriate to those perceived as being encumbered by illness Comprises regulatory features that control the �deviant behaviour� of illness thereby preventing disruption of societal stability & cohesiveness (i.e. �The Social Order�). The social community determines whether we can legitimately consider ourselves as ill. We influence the social community�s decision by how we present and behave.

6. Benefits of The Sick Role Ability to gain exemption from normal roles e.g. employment, domestic work Societal relinquishment of perspective that individuals concerned are responsible for their illness and predicament

7. Obligations of The Sick Role Individual should be seen as wishing to leave this temporary role and become well Individuals must cooperate with competent health professionals

8. Factors influencing individual response to illness Symptom visibility & perceived importance of this Assessment of symptom�s significance Potential for symptoms to disrupt community Symptom denial for fear of confirmation of serious illness Deferring response to symptoms because of competing social demands Assessment of social & economic costs of responding to symptoms versus potential health-related benefits Available information knowledge & cultural assumptions & understandings Symptom frequency & persistence Competing interpretations of symptoms

9. The Social Context Behaviour is socially determined Zborowski,1952 Cultural differences in pain perception & responses to pain Daryanani et al, 2001 Pathways into, & accessibility of, Child & Adolescent Mental Health Services are highly ethnically, culturally & socially determined.

10. Race, Ethnicity & Culture Race A person�s biological inheritance Ethnicity The way a person thinks about that biological inheritance Culture The social network within which conversaitons about race & ethnicity evolve

11. Daryanani et al, 2001 1,117 children referred to local Child & Adolescent Mental Health Service over a period of one year 113 (10%) did not attend any appointments 348 (31%) remained open 423 (38%) were seen and subsequently closed Non recording of ethnic origin data significantly greater for families who failed to attend

12. Statistically Significant Referral Tendencies Over referral of White children by General Practitioners Over referral of Black & South Asian children by Specialist Doctors Over referral of Black children by Education Services Over referral of Mixed Race children by Social Services No relationship between problem type & referral tendencies

13. Implications Significant biases operating in referral route according to ethnic background of child. Problem of overlooking within-group cultural diversity Nonetheless, even in ostensibly liberally-minded, educated, caring & professional groups, skin colour remained the most influential immediate factor in assessing ethnic identity. In 1994 �Black-Caribbean� pupils accounted for only 1.1% of the school population but formed 7.3% of those permanently excluded.

14. The Psychological Context Cognitions as well as behaviours have a situational basis influenced by time, location & company. �It is not things themselves which disturb us but the view we take of them.� - Epictetus Atrributional Style � Seligman Internal-external dimension (�locus of control�) Global-specific dimension (situationality) Stable-unstable dimension (time) Optimism scale

15. Those scoring highest on Optimism Scale tend to be: More successful Healthier Improve under pressure Endure stress better Live longer Importance of habitual patterns of subjective beliefs about the causes of events (�explanatory style�)

16. Richards et al, 2005, 2006 21 young people with Chronic Fatigue Syndrome & their parents Opinion regarding likely causes & appropriate responses/treatments sought Effort to expand understanding of young peoples� and family�s beliefs & responses rather than extrapolating simplistically from adult research data

17. Causality Beliefs Physical Infection Disordered immune system Recurrent minor illnesses Environmental toxins Dietary Psychosocial Family stresses Educational stresses

18. Treatment & Management Beliefs Do less Avoid exercise Rest Avoid academic work Exercise more & do more �The exploration of a patient�s biography is an important strategy in establishing a successful working relationship.�

19. Parent � child differences Children likely to favour rest rather than exercise & to be at high risk of psychiatric disorder Parents not of this view Conflicts with earlier notions of parental misattributions & inappropriate belief systems influencing child�s beliefs and behaviours Suggests that generally rational parents may often be struggling with their generally irrational offspring Important implications for professional perspectives & family engagement/management approaches

20. Influences on development Constitutional Temperamental cognitive appraisal Parental Individually Together Siblings Family as a whole unit/system Friends School Community Society Culture, race, ehnicity, religion Personal experiences, their nature & their temporal relationships to each other

21. The Behavioural Context Common functions of behaviour Attention seeking Solitude seeking Demand avoidance Overstimulation Understimulation Self-stimulation

22. Consequences of behaviour: ? frequency & intensity through: Adding pleasant consequence (+ve reinforcement) Removing unpleasant consequence (-ve reinforcement) ? frequency & intensity through: Removing pleasant consequence (extinction) Adding unpleasant consequence (aversion)

23. Behavioural theories Learning Theory Classical conditioning (Pavlov) UCS, CS, UCR=CR Learning by association Operant conditioning (Skinner) UCS=CS, CR Learning by consequence Social learning theory (Bandura) Vicarious learning Antecedents, Behaviour, Consequences

24. Other influences The process of time & the impact of early imparted information The grief process & chronic sorrow Is there a human tendency to react to illness & disability in certain ways?

25. What would a healthy way to be ill look like? Depends what we mean by �healthy�! Minimising dysfunction & disability Maximising personal potential & quality of life Promoting rapid & complete recovery Acknowledging & accepting need for help where appropriate while maintaining & developing self-sufficiency & resilience Avoiding dependency Maximising coping

26. What we do to help? Mutual respect & spirit of equality Collaborative empiricism Expect to have to explain one�s view rationally just as one would expect of the family Try to understand why families think & behave as they do Scope for compromise? Experiential exploration