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Sutcliffe, Katy

English

Institute of Education EPrints

''Thedoctor needs to talk to me,
because I'm the one that deals with it
and I know what happens"
Shared Decision-Making - An Evidence-Based Approach for
Supporting Children, Parents and Practitioners to Manage
Chronic Conditions
Katy Sian Sutcliffe
Institute of Education, University of London
Thesis presented to the University of London for the degree of Doctor of
Philosophy
Abstract
UK government policy urges healthcare practitioners to involve patients,
including child patients, in decision-making. To date, there has been no
assessment of the evidence regarding the efficacy and the acceptability of such
approaches when used with children. This thesis reports the development,
testing and consequent refinement of a theory-based model of shared
decision-making (SDM) for use with children with chronic conditions. A multi-
method approach was used to explore its composition comprehensively and to
assess the evidence base.
SDM involves patients and carers in the process of making healthcare
decisions; drawing on both clinicians' expertise, and patients' and carers'
experience and values. Four distinct elements were identified in the
development of a theoretical model:
a. recognising and understanding that patients' experiences and values
play a part in managing chronic conditions
b. facilitating active involvement in consultations of patients, carers and
practitioners
c. making mutual decisions about treatments and management regimes
agreed by practitioners, patients and families
d. fostering a sense of trust and partnership between practitioners and
families.
Qualitative evidence collected via in-depth interviews and a systematic
synthesis of qualitative research reveals that, although minor amendments are
necessary, the structure of the four-component model is valid. The strong
qualitative evidence base reveals children and parents perceive SDM to improve
3
their experience of chronic conditions, their experience of working with
practitioners, and their ability to manage their condition.
A systematic synthesis of research measuring the effects of SDM-type
interventions reveals a more limited evidence base. Evidence from four sound
trials suggests that each individual SDM component can improve the health of
children with chronic conditions, address their social concerns in relation to
their condition and improve practitioner-patient relationships. Further trials
research is needed, however, to determine the efficacy of SDM as a holistic and
theoretically embedded intervention.
I
!
4


Shared decision-making : an evidence-based approach for supporting children, parents and practitioners to manage chronic conditions

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UCL Discovery

''Thedoctor needs to talk to me,because I'm the one that deals with itand I know what happens"Shared Decision-Making - An Evidence-Based Approach forSupporting Children, Parents and Practitioners to ManageChronic ConditionsKaty Sian SutcliffeInstitute of Education, University of LondonThesis presented to the University of London for the degree of Doctor ofPhilosophyAbstractUK government policy urges healthcare practitioners to involve patients,including child patients, in decision-making. To date, there has been noassessment of the evidence regarding the efficacy and the acceptability of suchapproaches when used with children. This thesis reports the development,testing and consequent refinement of a theory-based model of shareddecision-making (SDM) for use with children with chronic conditions. A multi-method approach was used to explore its composition comprehensively and toassess the evidence base.SDM involves patients and carers in the process of making healthcaredecisions; drawing on both clinicians' expertise, and patients' and carers'experience and values. Four distinct elements were identified in thedevelopment of a theoretical model:a. recognising and understanding that patients' experiences and valuesplay a part in managing chronic conditionsb. facilitating active involvement in consultations of patients, carers andpractitionersc. making mutual decisions about treatments and management regimesagreed by practitioners, patients and familiesd. fostering a sense of trust and partnership between practitioners andfamilies.Qualitative evidence collected via in-depth interviews and a systematicsynthesis of qualitative research reveals that, although minor amendments arenecessary, the structure of the four-component model is valid. The strongqualitative evidence base reveals children and parents perceive SDM to improve3their experience of chronic conditions, their experience of working withpractitioners, and their ability to manage their condition.A systematic synthesis of research measuring the effects of SDM-typeinterventions reveals a more limited evidence base. Evidence from four soundtrials suggests that each individual SDM component can improve the health ofchildren with chronic conditions, address their social concerns in relation totheir condition and improve practitioner-patient relationships. Further trialsresearch is needed, however, to determine the efficacy of SDM as a holistic andtheoretically embedded intervention.I!4

http://discovery.ucl.ac.uk/10006509/1/sutcliffe2010.pdf

Shared decision-making : an evidence-based approach for supporting children, parents and practitioners to manage chronic conditions

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