1. AHP CYP Network Meeting 1st October 2010
Psychosocial Interventions for Improving Adherence, Self-Management and Adjustment to Physical Health Conditions Specialist Children’s Services Dr Terri Carney Programme Director NES

2. Background
The Scottish Government Health Directorate (SGHD) in the policy document ‘Better Health, Better Care: National Delivery Plan for Children and Young People’s Specialist Services in Scotland’ (SGHD, 2008) charged NHS Education for Scotland (NES) with building psychological capacity and capability in Scottish Paediatric Healthcare.
As such, the development, delivery and evaluation of an educational programme on Psychosocial Interventions to improve Adherence, Self-Management and Adjustment to Physical Health Conditions for Children and Young People was commissioned.
Close working between Nursing, Midwifery and Allied Health Professions (NMAP) and Psychology Directorates within NES.

3. Population Statistics
Around 10% of children (under 19 years) are admitted to hospital each year, with more young children (under 5s) admitted than older children (DoH, 1993). Respiratory difficulties particularly high prevalence.
In a typical year a pre-school child will see their GP 6 times and a school-age child 2-3 times. (DoH 2004)
In any year 1 in 11 children will be referred to a hospital outpatient clinic and 1 in 10 admitted to hospital.(DoH 2004)
Chronic physical illness in children doubles the risk of psychopathology. ( Meltzer et al 2000).

4. Why focus on adherence & self-management?
The management of physical conditions is linked to health behaviour and lifestyle
Non-adherence has been estimated to compromise the health outcomes of paediatric treatment by an average of 33% and by as much as 71% (DiMatteo et al 2002)
Rates of non-adherence to medication treatment range from 25% to 60% for Children & Young People (Carter et al 2003)
Children and Young People with physical health conditions are twice as vulnerable to developing mental health or behavioural problems than those in good health (Needs Assessment CAMH 2003)
Today’s Young People are at risk of being the first generation in modern history to be less healthy than their parents (Rollnick et al 2008)
Evidence base for the effectiveness of Psychosocial interventions

5. Why focus on adjustment?
Non-categorical approach (Stein & Silver 2001, Pless & Pinkerton 1975).
Considers psychosocial adjustment to chronic conditions not as a function of a specific chronic disease but as a function of common dimensions that cross disease categories. Applies not only to children and adolescents but also their families. Suggest that it is the variability within each of these dimensions that have implications for adjustment rather than different diagnoses. These dimensions include:
Visibility and social stigma
Threat to life
Intrusiveness of pain, treatment or care routines
Nature of onset and course
Secondary functional and cognitive disability
Stability versus crises

6. Adjustment Tasks for the Child Dealing with pain and incapacity.
Dealing with the hospital environment and development of relationships with the hospital staff.
Preserving emotional balance by managing feelings of anxiety, resentment and isolation.
Preserving a positive self-image.
Preserving relationships with family and friends.
Preparing for an uncertain future.

7. Adjustment Tasks for the Parents/Carers
Additional childcare responsibilities, e.g., catering for dietary needs, supervising medication, home based treatments, e.g., physio, night-time feeding.
Attending appointments with a variety of professionals.
Disproportionate amount of time being divided to one child. (Expense of others)
Own work-career on hold.

8. Adjustment Tasks for the Sibling(s)
May be required to help with practical tasks.
Responsibility for supervising or entertaining other children in the family.
Alternative care arrangements when parents in hospital.
Parents may not be able to participate so fully in their lives.
May feel less important, special or loved.

9. Summary – Family Adjustment
Response of the family is critical to the adaption of the child.
Children are an integral part of a family system.
The family is in the vast majority of cases the child’s main source
of support.
The whole family has to adapt to the problem.

10. Theoretical Frameworks
Conceptual model of Child Adjustment (Wallander & Varni 1992) - applicable to a wide range of paediatric chronic physical disorders.
‘Risk and Resistance factors’ - used in the development of interventions -Considerable individual differences
Risk Factors
Disease/disability parameters (diagnosis, handicap severity, medical complications, bowel/bladder control, visibility, cognitive functioning).
Functional dependence in the activities of daily living.
Psychosocial stressors (disability related problems, etc).
Resistance
Intrapersonal factors - competence.
Social-ecological factors - practical resources available to the family.
Stress-processing factors.

11. Promoting Adjustment –Talking with Children about Illness
Although only one person within the family may be ill, the illness experience happens to everyone.
Children cope better when adults talk openly with them than when they are surrounded by a wall of silence. Openness about illness can help children to adapt.
Information must be given at their level of understanding.
Children aware when their parents are worried. What they don’t know they will try to interpret themselves.
When children are included they can be guided towards accurate and hopeful interpretations of the events and learn adaptive coping skills
Important to tell children the truth from the start to establish and maintain a bond of trust. Otherwise they may find out in other ways.
Children are resilient especially in a supportive environment. Their response is shaped not so much by the change as by how it is presented and how well prepared they feel.

12. Talking with Children
Everyone should be clear about who is taking responsibility for talking to the children and what information is given.
Parents may wish health care providers to be involved with this process.
Give information at a pace that suits the child. May take time to assimilate information.
Information can be given in many different ways. (Drawings, play, written materials)
Use words with which the child is familiar.
Be guided by the questions children ask

13. On Diagnosis Give enough information to allay their immediate fears
Children must be reassured that they will be kept informed and taken care of
Children need to be prepared for what will happen next
Explain what it means.
Allow them to show their feelings openly. Accept their feelings. Do not try to stop them or undermine them.

15. Contents Communication Developmental Considerations
Planning and Implementing Core Level Psychosocial Assessment and Intervention
Psychosocial Interventions – Behaviour Change
Psychosocial Interventions – Reducing Distress
Adherence to Treatment
Self-Management
Adjustment
Books/References

16. Resource Level
Covers a range of evidence based psychosocial Interventions at Level 1 (Mowbray 1989). At this level all healthcare staff working with children and young people are required to provide psychosocial care through:
Maintaining an effective and appropriate relationship
Listening accurately
Recognising and responding to verbal and non-verbal cues
Respecting individual differences and needs
Providing psychosocial advice, support and intervention
Establishing rapport and empathy with all service users
Some staff groups may use the resource to support work at Level 2. This level involves using circumscribed psychological methods where an individual has specific training but will usually be supported by supervision from staff with Level 3 skills.

17. Resource Principles
As this initial work is a ‘pilot’ it aims to be as inclusive as possible in the following ways:
Focus on cross-categorical aspects of psychosocial care (not limit to condition-specific care):
Adjustment to Physical health Conditions
Self-Management
Adherence/Concordance
Make available and relevant to all groups of staff working within Specialist Children’s Services
Include a range of Interventions which staff can use
Recognition that there will be a wide range in the levels of expertise already in practice

18. Resource Outcomes
Therefore the aim of developing the resource and training based on it is as follows:
Raise awareness
Develop core skills in psychosocial interventions with children and young people
Increase confidence and support for staff providing psychosocial care in routine work with children and young people
Access to a flexible learning tool on psychosocial intervention which staff can use as required

19. Training on Psycho-social Interventions
Based on the Resource the following Training Activity has been scheduled:
Oct (2010) – Delivery of ‘Train the Trainers’ Event - Paediatric Psychologists. They will then deliver training locally which will be responsive to local need
Nov-Dec(2010) – Training based on the resource will be delivered. Two days training in each region (Aberdeen, Edinburgh and Glasgow)
Jan – March (2011) – Evaluation. Reviewing local systems of sustainability & impact

21. Sustainability of Training
Cascade local delivery of training
Identify and train local champions who will lead future local training (flexibility to ensure local training needs met)
Development of a local infrastructure to ensure:
Training is applied in practice
Monitor impact/Evaluation
Maintenance of skills (refresher training)

22. Following Training…
Opportunity to develop a supportive culture which encourages:
A forum to discuss psychosocial issues
Case discussions
Psychosocial meetings
Reflections of practice
Peer support
Evaluation

23. Additionality
More children, young people and their families will have access to a wide range of psychosocial knowledge and skill at the appropriate level
Earlier identification and intervention in response to psychosocial difficulty resulting in reduced co-morbidity and the development of secondary problems
Initiating adaptive health behaviour from the onset and improving health outcomes
Enhanced psychological competence throughout Specialist Children’s Services ensuring the most cost -effective way of delivering psychological care
And finally, early days but…Article for Pulse 5th May 2010 by Gareth Iacobucci - linking data from IAPT to GP records found that the programme is reducing hospital admissions, length of stay, outpatient activity and attendance at casualty