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

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)

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

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

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

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

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

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

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

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

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

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

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

Thank you for listening e-mail: j.e.smith1@hleeds.ac.uk @hud.ac.uk

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; 143-59; 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: 10.1111/hex.12040;