A randomised controlled trial of lay-led self-management for myocardial infarction patients who have completed cardiac rehabilitation.

BACKGROUND: There are increasing opportunities for MI patients to attend lay-led, community based generic self-management programmes via self-referral. AIMS: 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. METHODS: 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. RESULTS: 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. CONCLUSION: The EPP appears to hold few benefits for MI patients who have attended CR.

Piloting education days for patients with early rheumatoid arthritis and their partners: a multidisciplinary approach.

OBJECTIVES: To develop, pilot, refine and reassess an education day presented by a rheumatology multidisciplinary team (MDT) for recently diagnosed (less than six months) rheumatoid arthritis (RA) patients and their partners/carers. METHODS: A patient education day was developed drawing on an assessment of local patient educational needs and preferences and input from a rheumatology MDT. Feedback from the first education day (2004) (Day 1; 12 patients; age range 19-63 years (median 46); 10 of whom were accompanied by a partner) informed the development of a second education day (2005) (Day 2; 19 patients; age range 36-75 years (median 57.5); 13 of whom were accompanied by a partner). Participants completed evaluation forms on both days and at follow-up between six and seven weeks later, rating each session on a 5-point scale on dimensions of 'informative', 'useful', 'interesting' and 'enjoyable'. A global rating of the day's 'usefulness' was completed at the end of each day on a 10-point scale. Participants were asked to write comments on each session and on aspects of the entire day. RA knowledge, and general and RA-specific self-efficacy were also measured on day 2 (and at follow-up) using the 12-item Patient Knowledge Questionnaire, the 10-item generalized self-efficacy scale and a four-item RA-specific self-efficacy scale. Both qualitative and quantitative methodologies were used in the analysis. RESULTS: Ratings for individual sessions were all high, with no session being rated below 4 out of 5 (1 = 'totally disagree' to 5 = 'totally agree') on both days. The majority of patients (84%) and their partners (57%) responded to the follow-up. Many had used the information package distributed on the day. Some patients and their partners reported positive changes in RA management. Although patient knowledge did not increase significantly (medians 11 at both time points, p = 0.054) (Day 2), RA self-efficacy improved (baseline 11 and 14, respectively), suggesting that patients were more confident in managing their condition (p = 0.010). CONCLUSIONS: The development of this 'local' education and information intervention was carried out in line with Medical Research Council guidelines, and the lessons learned from Day 1 informed further development for Day 2. A one-day format for education of early RA involving the rheumatology MDT was rated highly by participants and warrants further examination. Although this study was a small 'local' intervention, its strengths are that it informs the possibility of wider developments of this kind using a MDT.

Optimism and psychological well-being among parents of children with cancer: an exploratory study.

AIMS: To identify the characteristics of optimistic parents of children with cancer. To examine the relationship between optimism, anxiety, depression, life satisfaction, coping and subjective health perception in parents of children with cancer and parents of healthy children. METHODS: One hundred parents of children with cancer were recruited during attendance at Oncology Out-patient Clinics at a UK Regional Cancer Centre. A comparison group of 117 parents of healthy children was also recruited. All parents completed a questionnaire, providing demographic and medical information relating to the child, dispositional optimism, psychological distress, life satisfaction, coping and subjective health perception. RESULTS: Parents of children with cancer had higher levels of anxiety, depression, optimism, satisfaction with life and subjective health perception than the comparison group. Optimism was significantly correlated with satisfaction with life, subjective health perception, anxiety and depression in both groups. CONCLUSION: The findings highlight the importance of optimism in relationship to psychological distress in parents of children with cancer. Interventions targeting parents' optimism are recommended as a potential source of coping with adversity within this population.

Information and self-management needs of people living with bleeding disorders: a survey.

The aim of the study was to conduct a survey of information and self-management needs among members of the UK Haemophilia Society (HS). Of 1082 members mailed, 307 took part in the survey, the mean age was 52.4 years (SD 14.8), 85% were male, 96% white and 66% were living with haemophilia A. 90% felt that there is a lack of understanding amongst the public regarding bleeding disorders, 76% felt that health professionals understood their health and information needs and 32% had experienced problems managing anxiety and or depression. Results suggest that there was a 'stigma' attached to having a bleeding disorder and almost half are very careful about informing others that they have a bleeding disorder. Self-efficacy was relatively high within the sample. Many respondents wanted to be kept informed about current research and the opportunity to participate in research. Women experienced a greater need for more information than men, particularly in the area of the 'medical management' and 'emotional' topics. Men appeared to need more information and or training on 'physical' aspects such as physiotherapy and joint replacement. The study provides an insight into the educational and self-management needs of those affected by bleeding disorders and highlights the importance of providing accessible information.

Beliefs about the causes of osteoarthritis among primary care patients.

OBJECTIVE: Beliefs about the causes of osteoarthritis (OA) have been examined infrequently. The purpose of this study was to provide insight into patients' beliefs about the causes of OA in a primary care population. METHODS: This study involved 31 individuals with OA who were purposively sampled to reflect age, sex, and self-efficacy scores from the intervention arm of a randomized controlled trial examining the effectiveness of an arthritis self-management program in primary care. Participants took part in face-to-face interviews. Data were analyzed using interpretative phenomenologic analysis. RESULTS: A total of 31 patients with OA (17 [55%] men) with a median age of 68 years (range 56-84 years) were recruited. OA and painful joints were considered to be an inevitable aspect of aging rather than an indication of disease. Participants attributed the cause of OA to multiple factors, the most commonly reported being wear and tear. CONCLUSION: Insight into beliefs about the causes of OA among older people may help explain attitudes towards the uptake of health care among this group of patients.

The training & support programme for parents of children with ataxia: a pilot study.

The aim of the study was to evaluate the impact of the Training and Support Programme among parents of children with ataxia. A total of 39 parents expressed an interest in the TSP, 27 (mean age 41; range 25-58) returned baseline questionnaires and completed the study. Twenty-four children (mean age 12.5 years, SD=12.4) received the TSP. Data were collected by self-administered questionnaires mailed to parents immediately before attending the TSP and at 4-month follow-up. Interviews were conducted with 10 parents immediately following TSP completion. Comparisons over time revealed significant decreases in parental anxious mood (p=.011), depressed mood (p=.046) and perceived stress (p=.020) and significant improvements in generalized self-efficacy (p=.010), satisfaction with life (p=.045) and parental health status (p=.020). Parents reported improvements in children's mobility, "jumping legs", sleep patterns, energy and activity levels, relaxation, and happiness (e.g., more smiles). Parents felt closer to their children and one parent had become "more accepting" of their child's ataxia. Results indicate that the TSP may enhance the psychosocial well-being of parents of children with ataxia although a randomized controlled trial would be necessary to determine whether the changes reported here are in fact due to attending the TSP.

Deafened tutors' experiences of delivering the challenging deafness (CD) course: 'recharging my motivational battery'.

The objective was to examine tutors' views regarding motivation to become a lay tutor on a generic, lay-led self-management programme, 'Challenging Deafness' (CD); their experience of course delivery; and the impact of being a tutor on their own lives. Eight tutors (6 male) were interviewed face-to-face. Data were analysed using content analysis. Motivation to become a tutor was associated with desire to help others and establish a new purpose in life. Tutors derived a satisfaction from sharing experiences with course participants and felt their contribution to the welfare of others was valued not only by course participants, but also by friends, family and society. Delivering CD courses reinforced tutors' own self-management, helped develop new skills (e.g. giving presentations), and enhanced confidence. Challenges associated with the tutor role included fatigue, travelling to venues, and managing some course participants. Although tutors felt supported in their role, some felt that advertising materials should reflect the psychosocial nature of the course. Several tutors suggested course modifications specific to the needs of deafened adults.

The psychosocial well-being of children with chronic disease, their parents and siblings: an overview of the research evidence base.

BACKGROUND: Chronic disease of childhood may have implications for the psychosocial well-being of children and their families. The purpose of this paper is to provide an overview of the current literature regarding the psychosocial well-being of children with chronic disease, their parents and siblings. METHODS: Electronic searches were conducted using AMED, CINAHL, Cochrane Database, DARE, HTA, MEDLINE, NHS EED, PsycLIT, PsycINFO and PubMED (1990 to week 24, 2004). Inclusion criteria were systematic reviews, meta-analyses and overviews based on traditional reviews of published literature. The titles of papers were reviewed, abstracts were obtained and reviewed, and full copies of selected papers were obtained. RESULTS: Six reviews of the psychosocial well-being of children were identified: three on chronic disease in general, one on asthma, one on juvenile idiopathic arthritis and one on sickle cell disease. Two reviews of psychosocial well-being among parents and two reviews of sibling psychosocial well-being were identified. Evidence from meta-analyses shows that children were at slightly elevated risk of psychosocial distress, although only a minority experience clinical symptomatology. The proportion that experience distress remains to be clarified, as do contributory risk factors. Few conclusions can be drawn from the two reviews of parents. However, a meta-analysis of siblings showed that they are at risk from a number of negative effects. CONCLUSION: This overview has highlighted the need to extend the evidence base for psychosocial well-being of children, parents and siblings.

A 12-month follow-up study of self-management training for people with chronic disease: are changes maintained over time?

OBJECTIVE: A previous study reported some improved outcomes at 4-month follow-up after attendance on a lay-led, chronic disease self-management course (CDSMC). The purpose of this study was to determine whether changes were maintained over time (i.e. at 12 months) and to describe participants' current use of self-management techniques. DESIGN: The study was a 12-month follow-up of a sample of 171 participants who attended a CDSMC in the UK. METHOD: Data were collected by self-administered questionnaires mailed to participants 12 months after they commenced a CDSMC and via telephone interviews with a sub-sample. RESULTS: The sample had a mean age of 54 years, mean disease duration of 16 years, 73% were women, and chronic diseases included endometriosis, depression, diabetes, myalgic encephalomyelitis, osteoporosis and polio. The significant improvements in outcomes identified at 4 months (i.e. cognitive symptom management, self-efficacy, communication with physician, fatigue, anxious and depressed moods and health distress) were sustained at 12 months. No significant changes between 4- and 12-month assessments were found on any study variables. Interview data confirmed that participants continued to use some of the self-management techniques learned on the course. CONCLUSION: Attendance on the CDSMC may lead to longer-term changes in key outcomes such as self-efficacy, use of some self-management behaviours and some aspects of health status (e.g. fatigue, depressed mood).

The psychological well-being and self-efficacy of carers of children with disabilities following attendance on a simple massage training and support programme: a 12-month comparison study of adherers and non-adherers.

OBJECTIVES: The Training and Support Programme (TSP) is an 8-week programme in which carers of children with disabilities receive instruction in simple massage techniques to use with their child. The aims of the present study were firstly to compare, adherers and non-adherers on measures of psychological well-being and self-efficacy and secondly, to examine whether, for adherers, the positive benefits of attending the TSP reported immediately after the Programme were maintained at 12-month follow-up. DESIGN: Eighty-two carers took part in the study. Data were collected 12-months after completion of the TSP by self-report questionnaires mailed to carers. For comparisons between adherers and non-adherers at 12-month follow-up a between-groups design was used. For comparisons over time, a within-subjects design was used. RESULTS: Adherers had significantly higher levels of self-efficacy for managing their child's psychosocial well-being, self-efficacy for carrying out the massage, and significantly better psychological well-being at follow-up compared to non-adherers. Furthermore, there were no significant differences over time on self-efficacy for managing their child's psychosocial well-being, self-efficacy for giving massage and levels of anxiety and depression at 12-month follow-up for adherers, suggesting that their improvements noted immediately post-programme were maintained at follow-up. Significant decreases on self-efficacy and depression were noted for non-adherers and there was a trend towards deterioration in anxious mood. CONCLUSION: In conclusion, the present study suggests that the positive benefits the TSP has for carers of children with disabilities can be maintained if carers continue to practise the massage at home with their child.

A review of self-management interventions for panic disorders, phobias and obsessive-compulsive disorders.

OBJECTIVE: To review current evidence for the clinical and cost-effectiveness of self-management interventions for panic disorder, phobias and obsessive-compulsive disorder (OCD). METHOD: Papers were identified through computerized searches of databases for the years between 1995 and 2003, manual searches and personal contacts. Only randomized-controlled trials were reviewed. RESULTS: Ten studies were identified (one OCD, five panic disorder, four phobias). Effective self-management interventions included cognitive-behavioural therapy (CBT) and exposure to the trigger stimuli for phobias and panic disorders. All involved homework. There was evidence of effectiveness in terms of improved symptoms and psychological wellbeing when compared with standard care, waiting list or relaxation. Brief interventions and computer-based interventions were effective for most participants. In terms of quality, studies were mainly based on small samples, lacked long-term follow-up, and failed to address cost-effectiveness. CONCLUSION: Despite the limitations of reviewed studies, there appears to be sufficient evidence to warrant greater exploration of self-management in these disorders.

Volunteer, lay tutors' experiences of the Chronic Disease Self-Management Course: being valued and adding value.

Chronic disease is a public health issue that could be addressed, in part, by increasing the ability of individuals to better manage their condition and its consequences on a day-to-day basis. One intervention designed to facilitate this is the Chronic Disease Self Management Course (CDSMC) that is delivered by volunteer, lay tutors who themselves have a chronic disease. Although there is growing evidence of course effectiveness for participants, the experiences of tutors have been neglected. This study aims to address this omission. Telephone interviews were conducted with 11 (six male) tutors: all interviews were transcribed and thematically analysed. Being a volunteer lay-tutor was perceived to be an enjoyable and valuable experience despite the challenges associated with course delivery, such as organizational demands and managing the diverse needs of mixed groups of chronic disease participants that led to a tension between disease-specific needs and the generic approach of the course. Being valued and adding value to the lives of others were key benefits of being a volunteer tutor, along with increased confidence that they were doing something positive for others. Course delivery prompted the initiation and maintenance of tutors' own self-management behaviours.

Psycho-educational interventions for children with chronic disease, parents and siblings: an overview of the research evidence base.

BACKGROUND: The role of psycho-educational interventions in facilitating adaptation to chronic disease has received growing recognition and is in keeping with policy developments advocating greater involvement of patients in their own care. The purpose of this paper is to provide an overview of the current literature regarding the effectiveness of psycho-educational interventions for children and adolescents with chronic disease, their parents and siblings. METHODS: Electronic searches were conducted using AMED, CINAHL, Cochrane Database, DARE, HTA, MEDLINE, NHS EED, PsycLIT, PsycINFO, and PubMED. Inclusion criteria were systematic reviews, meta-analyses and overviews based on traditional reviews of published literature. The titles of papers were reviewed, abstracts were obtained and reviewed, and full copies of selected papers were obtained. RESULTS: No reviews of psycho-educational interventions were found for either parents or siblings. Twelve reviews of interventions for children and adolescents were identified: chronic disease in general (three); chronic pain (one); asthma (three); chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) (one); diabetes (two); juvenile idiopathic arthritis (JIA) (one) and one informational intervention for paediatric cancer patients. The main focus was on disease management (particularly in asthma and diabetes) with less attention being paid to psychosocial aspects of life with a chronic condition. Overall, there is evidence of effectiveness for interventions incorporating cognitive-behavioural techniques on variables such as self-efficacy, self-management of disease, family functioning, psychosocial well-being, reduced isolation, social competence, knowledge, hope, pain (for chronic headache), lung function (asthma), days absent from school (asthma), visits to A & E (asthma), fatigue (CFS), and metabolic control (diabetes). A number of gaps and limitations were identified across all disease categories, such as inadequate description of interventions, small sample sizes, and lack of evidence regarding cost-effectiveness. CONCLUSION: This overview has highlighted the need to extend the evidence base for psycho-educational interventions, particularly in a UK context. It is essential that effective interventions are implemented and embedded in service provision in order to maximize empowerment through self-care for children, adolescents and their parents.

Being a parent or grandparent with back pain, ankylosing spondylitis or rheumatoid arthritis: a descriptive postal survey.

Research that explores being a parent or grandparent with musculoskeletal problems has been fairly limited to date. The aim of this study was to describe the experience of parenting in the context of back pain (BP), ankylosing spondylitis (AS) and rheumatoid arthritis (RA), with a particular focus on the extent and nature of childcare experiences and to compare these experiences across the three groups. In addition, the possible reasons for these reported experiences, the availability of advice and support and the development of strategies for coping were explored using a cross-sectional descriptive survey. A total of 448 participants was recruited from relevant charitable organizations and the National Health Service (280 with BP, 106 with AS and 62 with RA). A combination of opportunistic and random sampling was used. Quantitative data were analysed with appropriate descriptive and inferential statistics using Statistical Package for the Social Sciences (SPSS version 10). Qualitative data were analysed using content analysis. Results indicate that a high proportion of all groups experienced a wide range of difficulties with parenting (81% BP, 77% AS, 97% RA). The most prevalent problems were similar for all three groups: lifting baby/child from the floor or cot, encouraging children/grandchildren to help with domestic chores and keeping up (in terms of energy) with children/grandchildren. However, the RA group reported having greater difficulties than the other two groups. Very little advice was offered to participants with parenting difficulties which may indicate a gap in service provision. However, a wide range of strategies for coping were described by respondents. The study highlighted a need for healthcare professionals to develop a greater awareness of parenting issues and to provide opportunities for these issues to be addressed.

Development of job-seeking ability in people with arthritis: evaluation of a pilot program.

Working Horizons is an intervention designed to prevent work disability by addressing the internal and external barriers faced by people with arthritis in their attempts to enter or maintain their positions in the employment arena. The aim of the pilot study was to determine whether Working Horizons influenced participants' self-efficacy and psychological well-being and to describe the experience of Working Horizons from the perspectives of participants and employment advisors (EAs). The study was a pre-test post-test design with an Intervention Group (n = 22) and Comparison Control Group (n = 22). Quantitative data were collected by self-completed questionnaires at baseline and at six-months follow-up. Qualitative data were collected via open questions on the questionnaires, interviews with a sub-sample of 10 participants, and a focus group with EAs at the end of the programme. Pilot data suggested that Working Horizons was effective in terms of increasing participants' job-seeking self-efficacy. In addition, the Intervention Group showed significant improvements on self-esteem and satisfaction with life. Qualitative findings confirmed that participants felt more 'confident' in relation to seeking employment, were more accepting of their condition, felt more positive and had greater awareness of the social model of disability. Participants valued the emotional and instrumental support provided by the EAs, who acted as successful 'work' role models. Interventions, such as Working Horizons, may be an effective means of addressing work disability, acting as a gateway to statutory services. The value of suitable role models in mentoring capacities was highlighted.

Self-management training for people with chronic disease: an exploratory study.

OBJECTIVE: To determine the effectiveness of a community-based Chronic Disease Self-management Course (CDC) for UK participants with a range of chronic diseases. DESIGN: The study was a multiple baseline, pre-test post test design with a sample of 185 participants who attended a CDC delivered in community settings by lay tutors, in the UK. METHOD: Data were collected by self-completed questionnaires before attendance and at four-month follow-up. RESULTS: The sample comprised 72% women (mean age = 53 years, mean disease duration = 16 years). The main chronic diseases included endometriosis, depression, diabetes, myalgic encephalomyelitis, osteoporosis and polio. Adjusting for baseline values and gender, small to moderate increases were found on cognitive symptom management, self-efficacy (disease and symptoms) and communication with physician. A similar sized decrease was found on fatigue, and small decreases were evident on anxious and depressed moods, and health distress. There were no changes in the use of health care resources, or on self-reported exercise behaviour. CONCLUSION: The results of this exploratory study suggest that self-management training for people with chronic diseases can offer benefits in terms of enhanced self-efficacy, greater use of cognitive behavioural techniques, and improvement in some aspects of physical and psychological well-being.

Educational preferences, psychological well-being and self-efficacy among people with rheumatoid arthritis.

As a basis for developing interventions to meet the psycho-educational needs of rheumatoid arthritis (RA) outpatients attending a regional hospital have been investigated. Specifically, patients' preferences for interventions addressing education (e.g. the disease and its treatment), self-management (e.g. pain-management, exercise) and the consequences (e.g. emotions, impact on work, family relationships) of RA were examined. In addition, psychological well-being and self-efficacy were examined. Results showed that patients preferred education about the disease and its treatment to be delivered on a one-to-one basis by health professionals. Similarly, emotional issues were believed to be best dealt with one-to-one although this could be with a similar other (i.e. a patient). Group interventions were the preferred format for self-management, exercise and relationship issues, whereas videos were thought to be useful for demonstrating use of aids and how other families cope. None of the participants would welcome computer-based interventions. Psychological well-being (e.g. depression, anxiety) remained stable over a 12-month period. Both physical and psychological health status were correlated with arthritis self-efficacy. The implications of these findings are discussed in relation to development of interventions to better meet the psycho-educational needs of outpatients with RA.

Work disability among people with ankylosing spondylitis.

OBJECTIVE: To investigate work disability among people with ankylosing spondylitis (AS) in terms of correlates and coping mechanisms. METHODS: The sample group (n = 133) was recruited through 2 sources: 1) consecutive patients attending outpatient clinics over a 6-month period, and 2) a random sample of members of the National Ankylosing Spondylitis Society. We used a cross-sectional survey with data collected by self-administered questionnaires and telephone interviews with a randomly selected subsample (n = 6). RESULTS: The majority of participants were men. The mean age was 49 years; the mean disease duration was 28 years. Thirty-one percent were unable to work because of AS, with an additional 15% reporting changes to their working lives attributable to AS (e.g., reduction in hours worked, change of job). Compared with being in full-time work, work disability was associated with being older, longer disease duration, lower educational standard, comorbidity, greater physical impairment, pain, fatigue, stiffness, anxious and depressed mood, and lower self-esteem. Descriptive data added further insight into the experience of work disability and coping with AS in a work environment. CONCLUSION: Work disability is worthy of further investigation to determine exact prevalence rates and psychosocial implications. Work disability could be addressed with simple interventions or adaptations in the workplace.

Patient education for people with arthritis in rural communities: the UK experience.

Research literature, based largely on studies conducted in the USA and Australia, suggests that rural and urban residents differ on health status variables. This assumption was examined in an exploratory study conducted in the UK. The experience of arthritis in rural communities was explored through interviews and comparisons were made between rural and urban participants attending an educational intervention designed to improve self-management ability. Results showed that rural residents valued their independence and the sense of community spirit. Contrary to expectations, urban rather than rural residents showed greater psychological distress. However, the effectiveness of the educational intervention was found to be independent of location; both urban and rural dwellers appeared to derive similar benefits.