Coyne, I

Fenton, G

Smith, JE

Swallow, V

White Rose Research Online

This is a repository copy of Implementing and evaluating models of family centred care or children with long term conditions - where next?.White Rose Research Online URL for this paper:http://eprints.whiterose.ac.uk/92674/Version: PresentationConference or Workshop Item:Smith, JE, Swallow, V, Fenton, G et al. (1 more author) (2015) Implementing and evaluating models of family centred care or children with long term conditions - where next? In: RCPCH/ Royal College of Nursing (RCN), Children and Young People International Conference, 27-30 Apr 2015, Birmingham. eprints@whiterose.ac.ukhttps://eprints.whiterose.ac.uk/Reuse Unless indicated otherwise, fulltext items are protected by copyright with all rights reserved. The copyright exception in section 29 of the Copyright, Designs and Patents Act 1988 allows the making of a single copy solely for the purpose of non-commercial research or private study within the limits of fair dealing. The publisher or other rights-holder may allow further reproduction and re-use of this version - refer to the White Rose Research Online record for this item. Where records identify the publisher as the copyright holder, users can verify any specific terms of use on the publisher’s website. Takedown If you consider content in White Rose Research Online to be in breach of UK law, please notify us by emailing eprints@whiterose.ac.uk including the URL of the record and the reason for the withdrawal request. Implementing & evaluating models of family centred care for children with long term conditions - where next? Dr Joanna Smith, Senior Lecturer, University of Huddersfield Gaynor  Fenton, Lecturer,  University of  Salford Dr Veronica Swallow, Associate Professor, University of  Leeds   Professor Imelda Coyne, Trinity College Dublin RCN CYP/RCPH Conference,  April 2015 Background  Effective collaboration between nurses & families is fundamental to care delivery  Family-centred care model is widely espoused as an effective framework  Evidence suggests many parents perceive that:  They are not supported in their role as manager for their child’s condition  Their expertise & contribution to care are not valued    Rationale & aim Usefulness of family-centred care model & how implemented & evaluated in practice requires further scrutiny  Implementation Evaluation Complementary critical evaluations of family-centred care research, in the context of childhood long-term conditions, will be presented Embedding family-centred care into practice   Family is a constant in child’s life  Parent-professional collaboration facilitated  Ethnic, cultural, socio-economic & diversity of families respected  Family strengths & individuality respected  Complete & unbiased information sharing Based on seminal work of Shelton & colleagues  Family-to-family support & networking encouraged & facilitated   Healthcare practices respond to child & family developmental needs  Policies & practices provide families with emotional & financial support  Flexible design of health care services   Value family as constant in the child’s life, with strengths & individuality Respect individual  preferences & values    Accurate & comprehensive information provision  Information sharing facilitates collaboration & partnership working  Patient-professional  agree treatments/care plans Design care in response to family needs Negotiation of roles / shared responsibility for care   Access to appropriate  services  Encourage family-to family support    Family-  centred care Theoretical framework    Concept synthesis of family-centred care & partnership-in-care  Scoping review of instruments measuring collaborative processes Aims Focussed on application to childhood long-term conditions Methods MEDLINE, CINAHL, PSYCINFO databases searched from 2000 to 2014 to identify instruments that measured family-centred care Scopus, CINAHL, BNI databases searched from 1999-2014 to identify research on implementing family-centred care in practice IDENTIFICATION SCREENING INCLUDED Other sources  (hand search/reference lists/conferences) n = 17 Database  Searching  n = 1463 Excluded title screen  n = 1329 Full text-article assessed for eligibility n = 151 Studies included in the review   n = 52 Excluded full article screen  n = 99 INSTRUMENTS THAT MEASURE FAMILY-CENTRED CARE Shared decision-making (n = 26) Partnership in care (n = 6) Family centred-care (n = 16) Patient-centred health care (n = 4) IDENTIFICATION SCREENING INCLUDED Other sources  n = 3 Database searching n =  376 Full text-article assessed for eligibility n = 52 Studies included in the review   n = 20 FAMILY-CENTRED CARE Database searching n = 222 PARTNERSHIP in CARE Other sources  n = 2 Excluded after title screen  n = 324 Excluded after full article screen  n = 32 Studies included in the review   n = 13  Excluded after title screen  n = 185 Full text-article assessed for eligibility n = 37 Excluded after full article screen  n = 24 n =  33 Remove  duplicates  n = 25 TOTAL INCLUDED STUDIES n = 30  • 16 studies related to family-centred care  • Processes of Care (MPOC) most used measure; self-report of parents’ perceptions of care • Measures not specifically developed to evaluate family-centred care in the context of long-term conditions in children Measures of family-centred care   • 23 studies included relating to embedding family centred care in practice • Antecedents: ‘unclear roles & boundaries’  ‘entrenched professional practices & attitudes’  ‘lack guidelines / policies supporting  family-centred care’ • Attributes: ‘valuing parents knowledge & experiences’  ‘supporting parents role as care giver’  ‘incorporating parents expertise into care delivery’ Antecedents & attributes of family-centred care Measures of patient-centred care models Model  Validated Instruments Shared decision-making  (n = 26)  COMRADE (Edwards et al 2003)  CONNECT (Haidet et al 2008),  OPTION (Elwyn et al 2003)  Control Preference Scale (Degner 1997)  Decisional Conflict Scale (O’Conner 1995)  Perceived Involvement of Care Scale (Lemann et al 1995)  Shared Decision-Making Questionnaire Decisional Conflict Scale) (O’Conner 1995)  Family centred- care (n = 16) Measure of Processes of Care  (MPOC -20, MPOC -56 & MPOC-SP)  Partnership in care (n = 6) & Patient-centred health care (n = 4)  No validated measures identified Framework for involving parents in care of a child with  long-term condition Domain Valuing parents’ knowledge  &  experiences Supporting parents in their role as care giver Incorporating parents’ expertise into clinical & psychosocial care  Collaborative processes Developing effective parent-professional relationships Negotiating with parents preferred level of support Ensuring transparency of  participatory processes Actions  Elicit & respond to parents’ concerns  Establishing rapport - develop a trusting relationship through clear communication, learning about family context , active listening & share parents’ experiences   Mutual information exchange  Establish parents’ contribution to child’s clinical care & desired level of involvement  Share decisions with parents & other professionals; collaborate when planning care  Involving parents in diagnosis & treatment decisions   Facilitate parents to express their opinions about care decisions  Incorporate parents’ knowledge of child & care experiences in assessment, planning, delivery & evaluation of care Smith, Swallow & Coyne, 2015 Key messages  Promoting & facilitating involvement requires nurses to work collaboratively with the family  Tools measuring the implementation of & evaluation of family centred-care are limited & need to be informed by evidence & appropriate theories  Implementation of family-centred care remains problematic   Thank you for listening   Dr Joanna Smith  Senior Lecturer, University of Huddersfield e-mail:  j.e.smith@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;  Shelton, T., Jepson, E. & Johnson, B.H. (1987) Family-centred care for children with special health care needs. Washington, DC: Association for the Care of Children’s Health.  Shields L., Zhou H., Pratt J., Taylor M., Hunter J. and Pascoe E. (2012) Family-centred care for hospitalised children aged 0-12 years. Cochrane Database of Systematic Reviews 2012, Issue 10. Art. No.: CD004811. DOI: 10.1002/14651858.CD004811.pub3. 

Implementing and evaluating models of family centred care or children with long term conditions - where next?

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Implementing and evaluating models of family centred care or children with long term conditions - where next?

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