[show abstract][hide abstract] ABSTRACT: The aim of this study was to examine patients' motivation to participate in the Royal College of Physicians Practical Assessment of Clinical Examination Skills (PACES). An exploratory cross-sectional study was performed with data collected via telephone interviews. All patients aged 18+ who participated in PACES at University Hospitals Coventry and Warwickshire in the last two years were invited to take part; 28 patients were interviewed. Data were analysed using thematic content analysis. Motivational factors identified included the opportunity to give something back for the care received, contributing to doctors' learning processes, altruism and being able to learn more about one's own condition. Patients believed that they offered real-life experiences that cannot be provided by actors. The social environment during PACES played a large part in volunteer retention. Recruitment of patient volunteers needs to emphasise the altruistic nature of the role in assisting the learning process for doctors and the subsequent benefit for future patients.
Clinical medicine (London, England) 02/2012; 12(1):45-8. · 1.32 Impact Factor
[show abstract][hide abstract] ABSTRACT: This paper examines the experiences of attending an Expert Patients Programme (EPP) delivered by bilingual tutors from the perspectives of 3 South Asian groups living in the Midlands region of the UK. Participants attended Focus Groups run by interpreters about their experiences of attending the EPP delivered by bilingual tutors. All responses were translated into English and analysed using framework analysis. In total, 14 participants attended the focus groups (4 Pakistanis; 10 Indians (4 Hindus and 6 Sikhs)). There was a consensus across all 3 groups that delivery by bilingual tutors helped make the EPP content accessible and helped participants to feel at ease. Perceived benefits of the EPP included learning new skills such as problem solving and action planning, increased confidence, communication competence and social interaction. These findings paralleled those found within majority groups. The study highlighted the importance of using bilingual tutors to deliver the EPP not only to enhance the accessibility to the Course but to ensure that Course delivery matches the needs of participants. It is essential that further research examines the utility of the Course when delivered in other languages to enhance the representativeness of the findings.
International Journal of Health Promotion and Education 10/2011; 49(4):156.
[show abstract][hide abstract] ABSTRACT: Use of the coping strategy positive reinterpretation was examined among parents of children with cerebral palsy (CP). Survey data (n = 66) were used to gain a general picture of positive reinterpretation use, which was then explored in greater depth using semi-structured interviews (n = 13). Positive reinterpretation was positively correlated with self-efficacy and negatively correlated with depression and stress. Interviews identified two types of positive reinterpretation: focusing on the positive aspects of the situation and finding meaning (in caring for a child with CP). Positive reinterpretation appeared to be an adaptive coping strategy used to deal with emotional stresses experienced by parents.
Journal of Health Psychology 09/2010; 15(6):801-10. · 1.22 Impact Factor
[show abstract][hide abstract] ABSTRACT: Parents of children with cerebral palsy (CP) may be at risk from poor psychosocial well-being, compared with parents of children without a long-term health condition (LTHC). However, research has produced some conflicting findings on the topic and no comparison studies have been conducted in the UK. Furthermore, studies have only used measures of negative psychosocial well-being. The aim of this study was to conduct a comparative study of parents of children with CP and parents of children without a LTHC in the UK.
Seventy parents of children with CP and 70 parents of children without a LTHC completed self-administered questionnaires, comprising measures of psychosocial distress and positive psychosocial well-being.
This study demonstrated that parents of children with CP have significantly poorer psychosocial well-being compared with parents of children without a LTHC: parents of children with CP had lower satisfaction with life and higher levels of anxious and depressed mood.
These results suggest caring for a child with CP may put parents at risk from poor psychosocial well-being. Interventions to improve parental well-being are urgently needed.
Disability and Rehabilitation 02/2010; 32(20):1673-7. · 1.54 Impact Factor
[show abstract][hide abstract] ABSTRACT: A lay-led, community-based intervention, the Chronic Disease Self-Management Course (CDSMC) is effective for a range of long-term health conditions (e.g. arthritis, heart disease). However, the perceived value and experience of the CDSMC for people with Multiple Sclerosis (MS) has not been examined. The present qualitative study addressed this omission. Ten participants with MS (7 female; age range 35 to 60 years; disease duration 4 to 19 years) were interviewed before attending the CDSMC and at 4-month follow-up. Data were analysed using Framework Analysis. Some participants learned new self-management techniques and reported enhanced confidence (self-efficacy), whereas other participants were already confident in their self-management ability and found the CDSMC acted as a reminder of techniques previously used. Relaxation, pacing, and goal setting were particularly valuable for managing fatigue. Goal setting helped some participants to build confidence. Participants valued meeting similar others including those with different conditions. The CDSMC was an opportunity for social comparison and inspirational role modelling. Improvements to the CDSMC were suggested, including the addition of specific MS information. Overall, the CDSMC was viewed as a valuable source of new skills and a reminder of previously learned self-management skills, particularly in the context of managing fatigue. Gender differences emerged.
Psychology & Health 12/2009; 24(10):1167-80. · 1.69 Impact Factor
[show abstract][hide abstract] ABSTRACT: This study was designed to understand emotional expression as an element of the chronic disease self-management course (CDSMC).
Interpretive phenomenological analysis (IPA) was used to analyse a qualitative interview data set in which 10 lay-tutors described their perceptions of emotional expression during a CDSMC. The accounts were used to develop an interpretive phenomenological account.
Tutors suggest that people on a CDSMC are often unaware of their own emotional state and lack the vocabulary for expression. Tutors use metaphorical language to help Course participants to identify their own feelings and construct meaning of their illness experiences. 'Off-loading' and 'feeling blue' are used to help them find the expressions to talk about their emotions and release their feelings.
Tutors use metaphoric terms as a framework for the understanding of emotional states that Course participants often find 'difficult to label'. The analogous structure of metaphor helps with the understanding of inner feelings and provides expressive phrases for dialogue that can lead to emotional relief.
This study provides important considerations that could be applied when training CDSMC tutors to help facilitate emotional understanding and expression.
Patient Education and Counseling 05/2009; 77(2):255-9. · 2.37 Impact Factor
[show abstract][hide abstract] ABSTRACT: There are increasing opportunities for MI patients to attend lay-led, community based generic self-management programmes via self-referral.
To determine the effectiveness of the Expert Patient Programme (EPP) for MI patients who had completed CR using a randomised controlled, wait-list design, with a nested qualitative study.
The Intervention Group attends the EPP immediately after completing the baseline assessment; The Control Group had the opportunity to attend the EPP after completion of the 4-month follow-up. 192 MI patients (72% men) completed baseline assessment; 162 responded at follow-up. Telephone interviews were conducted with 10 male and 9 female Intervention group participants.
Intention-to-treat analysis revealed no statistically significant differences between the groups although a pattern of small improvements among the Intervention Group was observed over time. Interviews revealed that Intervention Group participants viewed CR as being more about instruction whereas the EPP was viewed as being more about discussion, mutual support, and goal setting. A gender difference emerged whereby male participants valued information exchange whereas female participants expressed a preference for emotional support and social interaction within the EPP context.
The EPP appears to hold few benefits for MI patients who have attended CR.
European Journal of Cardiovascular Nursing 04/2009; 8(4):293-301. · 2.04 Impact Factor
[show abstract][hide abstract] ABSTRACT: To determine the impact of the Chronic Disease Self-Management Course (CDSMC) on people with multiple sclerosis (MS).
2-group, randomised, controlled trial with Intervention Group (IG) and Waiting-List Control Group (WLCG). Additional data were collected from a Comparison Group (CG) who chose not to attend the CDSMC. Participants completed baseline questionnaires; IG participants attended the CDSMC immediately; all participants were assessed at 4-months and 12-months.
216 baseline questionnaires were returned; 73% were female, mean age 51.1 years, mean disease duration 12.0 years. Results showed that the CDSMC had an impact on self-management self-efficacy (ES 0.30, p=0.009 for the IG) and MSIS physical status (ES 0.12 for the IG, p=0.005). There were no other statistically significant changes. However, trends towards improvement on depression (ES 0.21 for the IG, p=0.05) and MS self-efficacy (ES 0.16 for the IG, p=0.04) were noted. All improvements were maintained at 12-months. At baseline, CG participants were older, had longer disease duration (p<0.01) and less anxiety (p=0.009) compared to RCT participants.
The CDSMC provides some small positive effects for people with MS. Motivation to attend may be linked to psychological distress and disease duration.
The CDSMC may be of value for those with mild anxiety/depression who need extra support. Attendance early in the disease course is recommended.
Patient Education and Counseling 04/2009; 77(1):81-9. · 2.37 Impact Factor
[show abstract][hide abstract] ABSTRACT: To assess the cost effectiveness of a self management programme plus education booklet for arthritis in primary care.
Cost effectiveness and cost utility analysis from health and social care and societal perspectives alongside a randomised controlled trial.
74 general practices in the United Kingdom.
812 patients aged 50 or more with osteoarthritis of the hips or knees, or both, and pain or disability, or both.
Randomisation to either six sessions of an arthritis self management programme plus an education booklet (intervention group) or the education booklet alone (standard care control group).
Total health and social care costs and total societal costs at 12 months; cost effectiveness (incremental cost effectiveness ratios and cost effectiveness acceptability curves) on basis of quality of life (SF-36, primary outcome measure), EuroQol visual analogue scale, and quality adjusted life years (QALYs).
At 12 months health and social care costs in the intervention group were pound101 higher (95% confidence interval pound3 to pound176) than those in the control group because the additional costs of the arthritis self management programme did not seem to be fully offset by savings elsewhere. There were no significant differences in societal costs (which were up to 13 times the size of health and social care costs) or any of the outcomes. From the health and social care perspective the intervention was dominated by the control on the basis of QALYs (which were non-significantly lower in the intervention group) and had incremental cost effectiveness ratios between pound279 and pound13 473 for the other outcomes. From the societal perspective the intervention seemed superior to the control owing to non-significantly lower costs and non-significantly better outcomes on all measures except QALYs. Probabilities of the arthritis self management programme's cost effectiveness ranged between 12% and 97% (for thresholds ranging pound0 to pound1000) based on one point improvements in SF-36 outcomes, but the clinical significance of this is debatable. Probabilities of cost effectiveness on the basis of the visual analogue scale and QALYs were low.
Cost effectiveness of an arthritis self management programme is not suggested on the basis of current National Institute for Health and Clinical Excellence cost perspectives and QALY thresholds. The probability of cost effectiveness is greater when broader costs and other quality of life outcomes are considered. These results suggest that the cost effectiveness of the Department of Health's expert patients programme cannot be assumed across all clinical conditions and that further rigorous evaluations for other conditions may be needed.
Current Controlled Trials ISRCTN79115352.
[show abstract][hide abstract] ABSTRACT: To examine the pattern of scores on self-efficacy, health status and use of self-management techniques among a group of Arthritis Self-Management Programme (ASMP) participants over an 8-yr period, and to describe participants' perspectives of the ASMP and current use of self-management.
Data from 125 participants who attended the ASMP as part of a randomized controlled trial and completed assessments at baseline, 4-month and 8-yr follow-ups were entered into the analysis. A sub-sample of 10 participants (five high- and five low self-efficacy) was interviewed.
The sample was 87% female; mean age 65 (s.d. 12) yrs; mean disease duration 19 (s.d. 11) yrs; 48% RA; 48% OA. The overall pattern of scores showed improvements between baseline and 4 months, which appeared to be maintained at 8-yr follow-up on self-efficacy, positive and negative affect, anxious and depressed moods, pain and fatigue, cognitive symptom management and communication with physician. The exception was HAQ, which was stable from baseline to 4 months (as expected), but had increased at 8 yrs indicating a decline in physical functioning. Sub-group analyses by RA and OA showed similar patterns of results. Interviews revealed that some participants continued to have problems with disease acceptance and highlighted the importance of pre-course expectations.
Long-term maintenance of self-efficacy, psychological well-being and self-management techniques may be possible following attendance on the ASMP. The need for additional psychological support for those who are having difficulty adjusting to their condition and its consequences is highlighted.
[show abstract][hide abstract] ABSTRACT: Deaths from long-term health conditions (LTHCs) are set to escalate rapidly worldwide over the coming decade. Many people from South Asian (SA) backgrounds in the UK face a heightened risk of such conditions, as they already experience severe health inequalities compared with the majority population, including a raised prevalence of many LTHCs. To address these issues, the World Health Organization advocates the use of psycho-educational self-management interventions, to empower people with LTHCs to improve their everyday management of the condition. In England and Wales, pairs of trained volunteer lay tutors deliver one such intervention, the Expert Patients Programme (EPP). However, few people from SA backgrounds attended the pilot phase of the EPP, raising disturbing concerns about exacerbating existing health inequalities. This exploratory, descriptive, cross-sectional study aimed to understand white lay tutors' experiences of delivering the EPP to English-speaking SA attendees. Qualitative in-depth semi-structured interviews were conducted, then verbatim transcripts were analysed using interpretative phenomenological analysis, to gain insight into participants' experiences. A divergence of tutors' training needs and South Asian attendees' perceived needs was identified. Conflicting and sometimes controversial views emerged about the tutors' understanding of the appropriateness of single-ethnicity versus mixed-ethnicity courses, and the role of interpreters on the EPP, in the themes of integration versus segregation and interpreters. This paper concludes that while these tutors have some understanding of SA people's needs in relation to the EPP, they may benefit from cultural competence training. The complexity of implementing both culturally integrated and ethnicity-specific public health interventions is highlighted, as is the requirement for genuine consultation with SA user groups.
Diversity in Health and Social Care. 10/2008; 5(4):281-290.
[show abstract][hide abstract] ABSTRACT: The aim of this qualitative study was to examine patients' experiences of being diagnosed with multiple sclerosis (MS), the information that they were given at this time, subsequent treatment and its impact on their lives.
Data were collected through semi-structured interviews with 24 people with MS. The use of interviews allowed participants' experiences to be explored in depth. Participants were recruited by the MS Society through membership details and through a press release in a local newspaper. Telephone interviews lasted between 30 and 60 minutes, were tape-recorded and transcribed verbatim. Data were analysed using thematic content analysis.
The majority of participants were female (n = 17), with ages ranging from 35 to 72 years. Disease duration ranged from 1 to 37 years. Many participants' diagnosed before and after 2000 had experienced long delays in diagnosis. At the point of diagnosis, participants had to make sense of and understand their diagnosis often with insufficient support. Some participants expressed anger about the way they had been given their diagnosis. Many felt they had not received sufficient information about their illness at this time and had responded by conducting their own searches for information to satisfy this need.
Improving the way in which doctors communicate with patients experiencing diagnostic delay and at the point of diagnosis deserves further study, in order to avoid later adjustment problems.
Journal of Evaluation in Clinical Practice 07/2008; 14(3):460-4. · 1.51 Impact Factor