This document outlines the career and research interests of Professor Ann-Louise Caress. She began her career as a staff nurse in renal care in 1982 and obtained her PhD in 1996. Her research focuses on patient and carer experiences living with long-term conditions like COPD and renal disease. She is interested in topics like symptom perceptions, information needs, decision-making preferences, and self-management. She has conducted numerous studies on these topics in respiratory and renal conditions. Professor Caress also advocates for patient and public involvement in research.

1. Becoming a Successful Researcher:Becoming a Successful Researcher:
Overcoming Obstacles andOvercoming Obstacles and
Optimising OpportunitiesOptimising Opportunities
Ann-Louise CaressAnn-Louise Caress
Professor of NursingProfessor of Nursing
University of Manchester andUniversity of Manchester and
University Hospital of South Manchester NHSFTUniversity Hospital of South Manchester NHSFT
ann.caress@manchester.ac.ukann.caress@manchester.ac.uk

2. 2013
1886 Staff Nurse (Renal)
1988 RA Manchester (Karen Luker)
1996
PhD awarded, Liverpool
- funded by DH nursing
research studentship
(Lesley Degner, Liz Scott)
1994-
1997
1998 Returned to Manchester as Lecturer
2007INVOLVE Advisory Group Member
Research: Research career began in 1988, as a
research assistant. Work focuses on living with and
management of long-term conditions, especially
renal and respiratory problems, with particular
interests in patient/carer needs/experiences;
patient and public involvement and health
information/patient education
2009Promoted to Professor
1982 Commenced training at UoM (Jean McFarlane)
1989RA Liverpool (Karen Luker);
first paper published
Lecturer, Liverpool
Married Gary
1999First grant as PI, £250K
(Ashley Woodcock)
2010
Executive roles for
American Thoracic
Society and ICCHNR
2012 NICE Evidence Advisory
Committee
2001-
2003
Joint appointment
(Christie Hospital)
£2million Asthma UK Centre grant (Co-I; PPI co-lead);
£1.6million NIHR HTA grant (Co-I; qualitative lead)
2003 £335K BUPA Foundation
(Asthma Lay Educators, Martyn Partridge)
2004 Promoted to Senior Lecturer
2008 Took up figure skating!
Joint appointment at UHSM
2014
25th
Wedding
Anniversary!
BLF ‘Outstanding
Patient Care in the
Community’ Award

15. Degner LF, Davison BJ, Sloan JA, Mueller B (1998) Development of a Scale to Measure
Information Needs in Cancer Care Journal of Nursing Measurement 6 (2) 137-153

17. ‘The divine root conceives
and the spring
breaks forth’
Wu Cheng’en
吳承恩

18. Related Work - AsthmaRelated Work - Asthma
• Information needs and decisional role preferences (DH/Asthma UK)
• Lay-led self-management education (BUPA Foundation)
• Computer-based communication aid for Somali patients with limited
English (EPSRC funded PhD with Computer Science)
• Nurses’ views on patient participation in treatment decisions (Astra-
Zeneca)
• Group CBT in severe asthma - feasibility study (AUK)
• Women’s experiences in Oman (PhD)
• Detecting and appropriately managing ‘at risk’ asthma status in
primary care, ARRISA-2 (NIHR HTA Programme Grant)

19. Related Work – COPD
• Patients’ and carers’ experiences of long-term oxygen therapy
(PhD)
• Health promotion – patient and carer perceptions (UoM)
• Fatigue PROM development (GlaxoSmithKline initially)
• Patients’ experiences and perceptions of specialist palliative care
• Safe oxygen use – perceptions of patients and healthcare
professionals (MAHSC)
• Nursing sensitive outcome indicators (BTS/PhD)
• Symptom perceptions, information needs and decisional role
preferences (GlaxoSmithKline)

20. Related Work – Other Respiratory
Conditions
• Respiratory conditions (general) – information needs, attitudes and
concerns re H1N1 ‘swine flu’ (DH – pandemic priority response
funding)
• Interstitial lung disease – information needs and decisional role
preferences (MRes)
• Chronic cough – patient experiences and descriptors (MPhil)
• Chronic pulmonary aspergillosis – health-related quality of life
(Fungal Infection Trust)
• Lung cancer – development and feasibility testing of an intervention
for a ‘symptom cluster’ (NCRI; Marie Curie Cancer Care)
• Cystic fibrosis – development of PROM for use during
exacerbations (PhD, Switzerland)

21. Related Work – Other Conditions
• Community palliative care – referral processes (PhD, DH funded)
• Atopic dermatitis – parents’ information needs and decisional role
preferences (medical post-graduate trainee project)
• Cleft lip and palate – parents’ experiences (MRC-funded PhD with Dentistry)
• Vasculitis – patient knowledge and experience of treatment pathway (GM
CLAHRC)
• Information exchange in stroke (PhD)
• Dilated cardiomyopathy – self care and health-related quality of life (PhD)
• Patient and clinician perceptions/experiences of palliative medicine
outpatient clinics (medical post-graduate trainee project)
• Systemic lupus erythematosus – patients’ experiences in Kenya (PhD)
• Pelvic vein incompetence – characterisation study (patient experience of
symptoms); case control study; intervention study (GM CLAHRC; PhD;
NIHR RfPB)
• Vein harvesting for CABG – laboratory/clinical/patient-reported outcomes of
different methods of harvesting veins (PhD – NIHR)
• The process of discharge from an Acute Medicine Unit (PhD – NIHR)

23. Related Work - Renal
• CKD – comparison of patients’, GPs’ and renal specialists’ views of
referral and management options (GM CLAHRC)
• CAPD – patients’ experiences of encapsulating peritoneal sclerosis
(PhD; internationally unique study)
• ESRD – access to specialist palliative care services (medical
postgraduate trainee project)
• Home Haemodialysis – patient-initiated variation in regimen (MRes)
• Haemodialysis – Health related quality of life in Saudi Arabia (PhD)
• Haemodialysis – Health related quality of life vs biochemical
markers (PhD)

25. COPD: Symptom Perceptions,COPD: Symptom Perceptions,
Information Needs and DecisionalInformation Needs and Decisional
Role PreferencesRole Preferences
• Two phase study
• Phase 1: Qualitative design; semi-structured,
audio recorded interviews; 60 patients; thematic
analysis
• Phase 2: Development and preliminary testing of
questionnaires, all based on ‘paired
comparisons’ approaches

26. Main SymptomsMain Symptoms
• Breathlessness
• Sputum production and accompanying cough
• Anxiety, fear and panic
• Nocturnal waking
• Impact on activities of daily living
• Tiredness
(descending order of frequency)

27. Day A* Day D*
Is congested with
mucus
Is congested with
mucus
Is feeling anxious Is not feeling anxious
Is having disturbed
sleep during the night
because of their chest
Is not having disturbed
sleep during the night
because of their chest
Is breathless only on
exertion
Is slightly breathless
during rest
Is able to do all of the
tasks they had planned
for the day
Is not able to do any of
the tasks they had
planned for the day
because of their chest
Weighting of SymptomsWeighting of Symptoms
(Conjoint Analysis – Discrete Choice Experiment)(Conjoint Analysis – Discrete Choice Experiment)

28. Core Information NeedsCore Information Needs
• Current progress and likely future outcome of the
condition
• Effect of COPD on the body
• Current medications
• Different/new therapies
• Understanding current symptoms and what they mean
• Symptom management
• Practical information to help maintain health
• Role of smoking in COPD
• Smoking cessation
• Identifying and responding to disease exacerbations
(NB Not in priority order)

29. Prioritising Topics of InformationPrioritising Topics of Information
(Thurstone Scaling)(Thurstone Scaling)
From each of the following pairs, please circle the one that is more
important for you to know:
1. Information about what my condition is and what it does to my body
8. Information about the stages of my condition, what to expect next
and the long term outlook for me
3.Information about the various treatments available for my condition,
and if and when they would be right for me
9. Information to help me recognise if my condition is getting worse,
what action I can take myself and when I should get help

30. Decisional Role Preference
(Vignettes after Degner et al 1997, using
Coombs’ Unfolding Theory)
ACTIVE
A. I Prefer To Make The Final Selection About Which Treatment I Will
Receive
B. I Prefer To Make The Final Selection Of My Treatment After
Seriously Considering My Doctor’s Opinion
COLLABORATIVE
C. I Prefer That My Doctor And I Share Responsibility For Deciding
Which Treatment Is Best For Me
PASSIVE
D. I Prefer That My Doctor Makes The Final Decision About Which
Treatment Will Be Used, But Seriously Considers My Opinion
E. I Prefer To Leave All Decisions Regarding My Treatment To My
Doctor

32. Cognitive Impairment in PeopleCognitive Impairment in People
with COPDwith COPD
• User reference group to
establish
relevance/priority
• Underlying mechanism
• Impact on self-
management

33. Acoustic Monitoring of Inhaler
Technique

41. NIHR:NIHR: www.nihr.ac.ukwww.nihr.ac.uk
North West Research Design Service (RDS):North West Research Design Service (RDS):
http://www.rds-nw.nihr.ac.uk/http://www.rds-nw.nihr.ac.uk/

47. “My research focuses on living with
and management of long-term
conditions, especially renal and
respiratory problems, with particular
interests in patient/carer
needs/experiences; patient and public
involvement and health
information/patient education”

52. INVOLVE: http://www.invo.org.uk/INVOLVE: http://www.invo.org.uk/