1. Why should parents & health professionals collaborate to manage childhood long-term conditions?
Dr Joanna Smith, Lecturer, University of Leeds
Dr Sarah Kendal, Head of Division Mental Health & Learning Disability , University of Huddersfield
PNAE Congress, May 2016

2. Background
International health policy advocates service & care delivery is patient-centered with health professionals actively collaborating with patients across all levels of healthcare
(International Alliance of Patients' Organizations, 2007)
Collaboration has been defined as:
‘A process of engagement in which health professionals & patients work together, often using information technologies to understand clinical issues & determine the best course of action’
(O’Grady 2010 page e1)

3. Context
The care of children & young people with long-term conditions is delivered primarily at home with parents taking responsibility for care decisions & delivering treatments, with the child as appropriate
To facilitate parents/ child care giving roles, health professionals must move from a position of care prescriber to collaborator
Yet, research suggests collaboration is variable with parents’ perceiving that their expertise and contribution to care are not valued

4. Rationale for involvement
Shapes health care intervention plans that address patient priorities
Offers opportunity to harmonise patients’ & professionals’ viewpoint
COLLABORATE
SUPPORT

5. Aim: to explore parents’ & health professionals’ views of the benefits of collaborating to manage the care of childhood long-term conditions

6. Methods
In-depth individual interviews with mothers, fathers, carers about involvement with care
Two focus groups to explore health professionals’ views of collaboration
Framework approach to analyse data, consists of 3 interlinked stages: data management; descriptive accounts; explaining the findings

7. Preliminary findings - parents
EXPECTATIONS
UNSURE
WANTING THE BEST
DEALING WITH HEALTH PROFESSIONALS

8. Alternative framework for involving parents in their child’s care
PARENT-PROFESSIONAL COLLABORATION FRAMEWORK FOR INVOLVEMENT
Parents knowledge & experiences of child & child’s condition is recognised & valued
Health professional must support parents role as main care giver
Parents expertise should be incorporating into clinical & psychosocial care
Involving parents in the management of their child with a long-tem condition is likely to be influenced by the attitudes & actions of health professionals
Drawing on antecedents & attributes associated with family-centred care & partnership–in-care the
PARENT-PROFESSIONAL COLLABORATION FRAMEWORK FOR INVOLVEMENT
was developed to reflect:
Parents knowledge & experiences of child & child’s condition
Requirement of health professional to support parents role as main care giver
Incorporating parents expertise into clinical & psychosocial care

9. EXPECTATIONS
If my child’s case has been discussed at a regional meeting, I want to know about that, because that’s a good thing, its not a bad thing

10. UNSURE
Not knowing what happens in her [psycho]therapy is fine but an idea about the plan would help, because at the moment I have no idea. I didn’t know what to do, you’ve got nobody to ask

11. WANTING THE BEST
they did suggest admitting her to hospital … but it was the psychiatric ward, so we said no because we said she’d never leave me and [her dad], we would never be able to leave her

12. DEALING WITH HEALTH PROFESSIONALS
I ended up ringing the doctor and saying to him I think he’s got Type 1 and he was saying don’t be silly, he’s two and a half, there’s no way he’s got Type 1 Diabetes

13. Key messages from parents
Parents have to learn how to manage complex care
They rely on health professionals for expert advice
Health professionals could proactively share knowledge and information
Despite concepts of family-centred care & partnership-in- care being well established, implementation remains problematic
Promoting & facilitating the child, young person & family’s involvement in the care requires nurses to work collaboratively with the family
This resulting framework is offered as a guide for professionals who want to promote & facilitate parents involvement in the care of children with long-term conditions across health-care contexts
Despite concepts of family-centred care & partnership-in- care being well established, this concept synthesis suggests implementation of these concepts into everyday practice remains problematic
Yet, promoting & facilitating the child, young person & family’s involvement in the care requires nurses to work collaboratively with the family
The resulting framework for involving parents in the care of a child with a long-term condition is offered as a guide for professionals who want to promote & facilitate parents involvement in the care of children with long-term conditions across health-care contexts

14. Thank you for listening
@hud.ac.uk

15. References
Smith, J., Swallow, V., Coyne, I. (2015) Involving parents in managing their child’s long-term condition: a concept synthesis of family centred-care and partnership-in care. Journal of Pediatric Nursing, 30, 1; ;
Smith, J., Cheater, F., Bekker, H. (2013) Parents’ experiences of living with a child with a long-term condition: a rapid structured review of the literature. Health Expectations, online doi:  /hex.12040;