Patient Centred Health Care
Patient-centred health care is defined as:
..health care that seeks to minimise the current and future experience of illness and to
minimise the negative experience of health care provision.
The theme is therefore focussed on patients' and carers' experience of both illness and the
interventions that are employed to address it. An understanding of people's experience of
illness and associated health beliefs provides a foundation for understanding both health
and illness behaviour - ranging from exercise and diet to adherence to drug or therapeutic
regimens.
The second dimension of the patient-centred research theme is an examination of people's
experiences of service provision. This includes both conceptual and developmental work
on satisfaction type measures and the possible creation of new clinical outcome measures
which more accurately embody patients' priorities and concerns.
Rationale: The importance of the patient’s experience and perspective on health care has
been increasingly recognized over the last decade, and is now a national research priority.
Aim: To improve the outcome of health care interventions by investigating patients’
experiences of their illness and its management.
ONGOING PROJECTS
Attitues to dietary and fluid restriction in renal disease - an in-depth survey of patients,
carers and renal unit staff
Adherence to physiotherapy among children with cystic fibrosis: a qualitative
investigation
Couples and postnatal depression:how do couples define support at times of stress?
Integrating three perspecitves of goals in asthma management: the patient, the health
professional and the evidence?
How satisfied are women with decision-making that leads to hysterectomy?
Women's experiences of being screened for post-natal depression: an in-depth study
The frequency of symptomatic hypoglycaemia in insulin treated diabetes: a population
based cohort study
A case-study of primary care practitioners' attitudes to an epilepsy guideline, its use and
implementation
COMPLETED PROJECTS
Improving the management of epilepsy: evaluating the relative efficiency of three
strategies for guideline introduction
The role of the person in patient-centred mental health care
Patient satisfaction and the development of a measure of patient-centred inpatient care (PCIS)
A survey of adherence to home exercise physiotherapy
The meaning of medication among people on long-term anti-depressants: a qualitative
study
An exploration of patient management strategies of medication among people with
treatment resistant schizophrenia
Ongoing Projects
ATTITUDES TO DIETARY AND FLUID RESTRICTION IN RENAL DISEASE – AN
IN-DEPTH SURVEY OF PATIENTS, CARERS AND RENAL UNIT STAFF.
Crombie I K, Davis J P L, Williams B, Henderson I S, MacLeod A M, Scott J, Richmond
P.
Chief Scientist Office, £94,759.
Contact: Dr Julian Davis
Dr Julian Davis is conducting this qualitative study to investigate attitudes to restrictions
of diet and fluid intake among patients with renal disease.
End Stage Renal Disease is a chronic condition, leading to the failure of renal function. In
Scotland approximately 2500 patients receive renal replacement therapy in the form of
haemodialysis, peritoneal dialysis or transplant. Dialysis patients in particular need to
restrict fluid and dietary intake. Poor adherence is common, and these restrictions can
have a major impact on quality of life. Focus groups and in-depth qualitative interviews
will be used to identify attitudes, beliefs and intentions surrounding adherence, and also
to investigate staff attitudes to issues concerning adherence. We will use these data to
construct questionnaires to explore attitudes to dietary and fluid restriction and beliefs
about adherence in a sample of 375 patients and carers from Dundee and Aberdeen. The
aim is to identify specific interventions which can improve quality of life and adherence
to dietary and fluid restrictions.
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ADHERENCE TO PHYSIOTHERAPY AMONG CHILDREN WITH CYSTIC
FIBROSIS: A QUALITATIVE INVESTIGATION.
Williams B, Dhouieb E, Dowell J, Morison M, Mukhopadhyay M, Smith A, Currie A.
Chief Scientist Office, £72, 322.
Contact: Dr Brian Williams
Cystic fibrosis (CF) is an inherited, life-threatening disorder of the lungs and digestive
system, which occurs in approximately 1 in 2,500 children. Chest physiotherapy is a
major component in the respiratory management of children with CF. Unfortunately the
intervention can be "unpleasant, uncomfortable, and time-consuming", and therefore
distressing for parents who may have to perform this on their children at home on a daily
basis. Studies among children with CF have shown that only 50% of parents and/or
children fully adhere to their recommended treatment regimen. A detailed qualitative
study will be carried out to examine attitudes, beliefs and intentions surrounding
adherence. Twenty-five children with cystic fibrosis will be interviewed in-depth. A
further twenty-five interviews will be conducted with a named family member involved
in their physiotherapy.
The study will help physiotherapists identify and address reasons for poor adherence and
inform interventions to improve adherence rates. This will reduce morbidity and improve
quality of life.
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COUPLES AND POSTNATAL DEPRESSION: HOW DO COUPLES
DEFINESUPPORT AT TIMES OF SRESS?
Bunyan M (Supervisors: Morison M, Williams B)
Chief Scientist Office: Research Training Fellowship
Contact: Dr Brian Williams
The aim is to explore through ethnographic techniques the experiences of PND for men
and women as couples who are in a parenting relationship for the first time. A related aim
is the exploration of their support needs and the mapping out of the related formal and
informal networks available
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INTEGRATING THREE PERSPECTIVES OF GOALS IN ASTHMA MANAGMENT:
THE PATIENT, THE HEALTH PROFESSIONAL AND THE EVIDENCE.
Steven K (Supervisors: Pagliari C, Williams B)
Chief Scientist Office: Research Training Fellowship
Contact: Dr Brian Williams
This project will identify disparities between the goals and priorities of the key
stakeholders in the management of asthma – the health professional (in this case, the
practice nurse) and the patient. These will be compared with each other and with those
instantiated within the British Thoracic Society (BTS) guidelines. Our findings will be
used to generate a model of asthma goal setting and negotiation amongst the actors in the
therapeutic relationship and the guideline or evidence-base
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HOW SATISFIED ARE WOMEN WITH DECISION-MAKING THAT LEADS TO
HYSTERECTOMY?
Siladitya Bhattacharya Vikki Entwistle, Zoe Skea, Alan Templeton (collaborator: B
Williams.)
Chief Scientist Office
This study aims to describe in more detail how women interact with health professionals
to reach decisions to proceed to hysterectomy, and how satisfied they are with the
decision making process. It will explore the relationship between women's satisfaction
with decision-making processes and their responses to measures of satisfaction with the
decisions made. It will also investigate whether women's reported satisfaction with
decision-making and decision made is different pre- and post-operatively.
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WOMEN'S EXPERIENCES OF BEING SCREENED FOR POST-NATAL
DEPRESSION: AN IN-DEPTH STUDY.
Muir M, Williams B, Gray M.
TayReN
Contact: Dr Brian Williams
The Edinburgh postnatal depression scale is routinely used throughout the UK. This indepth study examined the acceptability of the scale to women and identified possible
reasons for a reluctance to admit to depressive symptoms.
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THE FREQUENCY OF SYMPTOMATIC HYPOGLYCAEMIA IN INSULIN
TREATED DIABETES: A POPULATION BASED COHORT STUDY.
Morris AD, Evans J, Ellis J, Crombie IK, Donnan PT, Newton RW
Aventis Pharma Ltd, £90,514
Contact: Professor Iain Crombie
This study involves 400 patients in Tayside who have type 1 or type 2 diabetes and are
treated with insulin. The aims of the study are to determine the incidence of symptomatic
hypoglycaemia and nocturnal hypoglycaemia, the prevalence of autonomic dysfunction
and its relationship to hypoglycaemia, the principal risk factors for hypoglycaemia, and
the quality of life of patients and patients' attitudes to and fear of hypoglycaemia.
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A CASE-STUDY OF PRIMARY CARE PRACTITIONERS' ATTITUDES TO AN
EPILEPSY GUIDELINE, ITS USE AND IMPLEMENTATION
Davis J, Williams B, Crombie IK, Roberts R, Dowell J
Chief Scientist Office, £36,012
Contact: Dr Julian Davis
Over the last ten years, the use of clinical guidelines has become a major feature of the
strategy aimed at getting evidence-based medicine into practice in both primary and
secondary care and dissemination strategies are important in encouraging guideline use.
An increasing number of trials, including a large-scale, community based trial of epilepsy
guideline implementation strategies in Tayside have failed to show any significant
change in outcome for patients. This study therefore proposes to build upon the existing
infrastructure of the epilepsy trial, and use qualitative methodology to explore the
attitudes and beliefs of health professionals, and the barriers to adherence, which
determine why the guideline dissemination strategies used in the epilepsy trial failed to
have any effect on professional behaviour. This will assist in the development of more
effective strategies for guideline implementation.
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Completed Projects
IMPROVING THE MANAGEMENT OF EPILEPSY: EVALUATING THE
RELATIVE EFFICIENCY OF THREE STRATEGIES FOR GUIDELINE
INTRODUCTION.
Davis JPL, Roberts R, Ruta D, Grimshaw J, Davidson D, Davey PG, Norman A, Ogston
SA, Grant J, Bain J
Chief Scientist Office, £148,023
Contact: Dr Julian Davis
This was a three arm, cluster randomised controlled trial of implementation strategies for
a national clinical guideline for the diagnosis and treatment of epilepsy in primary care.
Epilepsy is the most common serious neurological condition, affecting about 5-10 per
1,000 of the population at any one time. It is estimated that the costs to the NHS are
around £109.27 million (1988 prices), while the costs to society as a whole have been
estimated at approximately £500 million (1989 prices). Local data suggests that around
£600,000 (£2,188 per head) is spent on epilepsy care in Tayside. Few epilepsies are
preventable, but much of the handicap that results could be prevented by appropriate
clinical management. There is emerging consensus on the management of epilepsy,
summarised in a recent review - 'An epilepsy needs document' - commissioned by the
Department of Health, and endorsed by the Joint Epilepsy Council of Great Britain and
Ireland. It recommends that, with good liaison between hospital and general practice and
agreed treatment guidelines, approximately 60-70% of patients could be managed by
their general practitioner.
A recent review of published evaluations of clinical guidelines concluded that guidelines
can improve clinical practice and achieve health gain. However, the successful
introduction of guidelines was dependent on the methods by which they were
disseminated and implemented. In order to establish the best method of introducing
clinical guidelines however, it is necessary to compare the marginal costs and benefits of
strategies for guideline introduction which vary in their use of scarce NHS resources.
We will evaluate three different strategies incorporating three cumulative levels of
intervention to introduce clinical guidelines for epilepsy management. For the purposes
of this study, epilepsy is defined as 'a paroxysmal (occasional) discharge of cerebral
neurones sufficient to cause clinically detectable events that are either apparent to the
subject or to an observer'.
Presentations
Research into guideline implementation in Tayside – The TIGER Trial. Davis JPL, Ruta
DA. Towards a Healthier Scotland, bringing Epilepsy out of the Shadows, Dundee, 1999.
Adapting Internationally developed evidence-based guidelines for local use: a case study
in seizure disorder. Davis JPL, Ruta DA. International Society for Pharmacoeconomics
and Outcomes Research, Edinburgh, 1999
The TIGER Trial – guideline implementation in Scotland. Davis JPL. International
League Against Epilepsy British Branch Annual Scientific Meeting, Edinburgh, 2000
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THE ROLE OF THE PERSON IN PATIENT-CENTRED MENTAL HEALTH CARE
Williams B, Healy D
This study examined the views and experiences of people with depression and anxiety
who were newly referred to a mental health team.
Welsh Scheme for Development of Health & Social Research: £3,500
Publications Williams B, Healy, D (2001) Disclosure of minor mental health problems:
an exploratory theoretical study. Journal of Advanced Nursing, 35 (1), 108-116.
Williams B, Healy, D. (2001) Perceptions of illness causation among new referrals to a
community mental health team: “explanatory model” or “exploratory map”? Social
Science & Medicine, 53 (4), 61-72.
Williams B, Cattell D, Greenwood M, LeFevre S, Murray I, Thomas, P. (1999),
‘Exploring "person-centredness": user perspectives on a model of social psychiatry’,
Health & Social Care in the Community, 7 (6), 475-482.
Williams B, Grant, G. (1998), ‘Defining "people-centredness": making the implicit
explicit’, Health & Social Care in the Community, 6, 2, 84-94.
Rogers A, Day JC, Williams B, Randall F, Wood P, Healy D, Bentall RP. (1998), ‘The
meaning and management of neuroleptic medication: a study of patients with a diagnosis
of schizophrenia’, Social Science & Medicine, 47, 9, 1313-1323.
Fitzgerald K, Williams B, Healy D. (1997), ‘Shared care? Some effects of patient access
to medical communications’, Journal of Mental Health, 6, 1, 37-46.
Williams B. (1995), ‘Users’ views of community mental health care’, in Crosby, C. and
Barry, M. (eds.), Community Care: Evaluation Of The Provision Of Mental Health
Services, London, Avebury.
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PATIENT SATISFACTION AND THE DEVELOPMENT OF A MEASURE OF
PATIENT-CENTRED INPATIENT CARE (P-CIS)
Williams B, Coyle J.
Development of the P-CIS was based on a three-year in-depth qualitative study
conducted by Joanne Coyle. The P-CIS is a 20-item scale with good reliability and
validity. It is also sensitive to differences in patient’s views and experiences.
Publications
Williams B, Coyle J, Healy D. (1998), ‘The meaning of patient satisfaction: an
explanation of high reported levels’, Social Science & Medicine, 47, 9, 1351-1360.
Coyle J, Williams B. (2001) Valuing people as individuals: a survey of personcentredness in secondary care. Journal of Advanced Nursing, 36(3), 450-459.
Coyle J, Williams B. (2000), ‘An exploration of the epistemological intricacies of using
qualitative data to develop a quantitative measure of user views of health care’, Journal of
Advanced Nursing, 31 (5), 1235-1243.
Coyle J, Williams, B. (1999), ‘Seeing the wood for the trees: defining the forgotten
concept of patient dissatisfaction in the light of patient satisfaction research’, Leadership
in Health Services, 12, 4, I-X.
Williams B, Wilkinson, G. (1995), ‘Patient satisfaction in mental health care’, British
Journal of Psychiatry, 166, 559-562
Williams B. (1994), ‘Patient satisfaction: a valid concept?’, Social Science & Medicine,
38, 4, 509-516.
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A SURVEY OF ADHERENCE TO HOME EXERCISE PHYSIOTHERAPY
Chappell F, Williams B.
The effectiveness of physiotherapy largely rests on patients continuing exercise regimens
at home between appointments. This survey examined adherence rates for such exercises,
and identified possible reasons for low adherence.
Dundee Teaching Hospitals Trust: £2,400
Contact: Dr Brian Williams
Publications
Chappel, F, Williams, B. (In Press) An exploratory study looking at adherence to home
exercise physiotherapy in the field of paediatrics. Physiotherapy.
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THE MEANING OF MEDICATION AMONG PEOPLE ON LONG-TERM ANTIDEPRESSANTS: A QUALITATIVE STUDY
Bruce D, Williams B, MacGillivray S, Cruickshank G.
TayReN
Contact: Dr Brian Williams
This was a qualitative study examining the views of patients who had been receiving
antidepressant medication for at least one and a half years.
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AN EXPLORATION OF PATIENT MANAGEMENT STRATEGIES OF
MEDICATION AMONG PEOPLE WITH TREATMENT RESISTANT
SCHIZOPHRENIA.
Williams B, Dowell J, Miller H, Alder B, Crombie IK, Macgillivray S.
Chief Scientist Office, £61, 881.
Contact: Mr Steve Macgillivray
Aim
To explore the experiences, health beliefs and management of anti-psychotic medication
among people with treatment resistant schizophrenia commencing clozapine.
Design
A qualitative study based on 47 in-depth interviews.
Setting
Adult mental health services in Tayside, Scotland
Sample
A purposive sample of 32 people with treatment resistant schizophrenia. Interviews with
carers were also conducted (n=15) and case note reviews conducted for all participants.
Results
Most people were uncertain as to what schizophrenia was or what caused it. The decision
to agree to start clozapine was problematic for many patients: there was a fear of the
dangers of the drug itself and of hospitalisation. There was significant variation in
patients' beliefs about the length of time it would take for clozapine to have a full effect
(6 months to 4 years). The lack of immediate benefit combined with initial side effects
lead to patients either ceasing clozapine or putting a deadline on their willingness to
continue. Patients described family, friends and staff as providing them with an important
indicator of how well they were. Patients who had continued on clozapine for over a year
were extremely positive about its benefits although previously minor side effects were
growing in importance due to changes in social context. A number of patients were
interpreting what may have been "normal" experiences as side effects of medication.
Conclusion
Services should address patients' poor knowledge and understanding of schizophrenia.
They should also address both patient's concerns about the dangers of clozapine and their
fears of hospitalisation. A number of changes to service provision may reduce cessation
rates on clozapine. These include: informing patients of the time delay to full benefits
from clozapine, involving staff, family and friends in identifying improvements during
the early stages of clozapine, recognising the changing meaning of side effects as patients
improve, and aiding the correct interpretation of non-medication based experiences.
Presentations
MacGillivray SA, Williams B. Schizophrenia and the methodological problem of
“insight” in qualitative interviews. Second Annual Advancing Qualitative Methods
Conference, February 2001, Edmonton, Canada.