Why patients take part in the Royal College of Physicians Practical Assessment of Clinical Examination Skills (MRCP PACES).

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.

The effectiveness of the Training and Support Program for parents of children with disabilities: a randomized controlled trial.

OBJECTIVE: The Training and Support Program (TSP) was designed to equip parents of children with disabilities with a simple massage skill for use with their children in the home environment. The effectiveness of the TSP was examined in a randomized controlled trial with a wait-list control group. METHODS: Parents were trained in massage by suitably qualified therapists in eight weekly sessions, each lasting 1 h. The sample comprised 188 parents who were randomized to an intervention group (n=95), who attended the TSP with their children immediately, or a control group (n=93), who were offered the TSP after 4 months of follow-up. Data were collected by self-administered questionnaires at baseline and at 4-month follow-up. RESULTS: The majority of participants were mothers (88%), with a partner (88%), and White European (82%); 40% worked full-time or part-time, and 34% had health problems (e.g., chronic fatigue, cancer, and arthritis). The TSP demonstrated statistically significant positive effects on parental self-efficacy (PSE) for managing children's psychosocial well-being and depressed mood (0.004 and 0.007). There were trends toward improvement on parental satisfaction with life (P=.053), global health (P=.065), and parental ratings of children's sleeping (P=.074) and mobility (P=.012). Effect sizes were small (0.11-0.23). Levels of anxiety, depression, and perceived stress were all higher than published norms. CONCLUSION: The TSP is an effective means of improving PSE and depressed mood. Additional means of supporting parents need to be investigated.

Living with haemophilia and von Willebrand's: a descriptive qualitative study.

OBJECTIVE: The aim of this qualitative descriptive study was to describe the experience of living with bleeding disorders and to identify the associated salient issues from the perspectives of people living with haemophilia or von Willebrand's Disease (vWD). METHODS: Nine members of The Haemophilia Society took part in a semi-structured interview. The interviews were tape recorded and transcribed and the results subjected to thematic content analysis. RESULTS: Participants described the physical aspects of their condition, such as bleeding into joints, the implications of bleeds and development of co-morbid conditions (e.g. arthritis). Many felt that their bleeding disorder had impacted on their education, work, social activities and family life. Anxiety and depression were associated with daily management of symptoms, the unpredictable nature of bleeding disorders and concerns about the future. All participants had encountered a degree of stigmatisation related to their condition and felt that there was a public misconception about bleeding disorders. Many had experienced discrimination in educational and work settings. Some participants expressed a preference for seeking treatment from specialist services. CONCLUSION: Living with haemophilia and vWD poses a number of daily and longer-term challenges not only for individuals, but also for their families. Further investigation of ways to support such individuals is warranted. PRACTICE IMPLICATIONS: Greater awareness and understanding of the issues faced by people living with haemophilia and vWD is needed for the general public, employers, and healthcare staff, particularly those working in Accident and Emergency Departments.

Design considerations in a clinical trial of a cognitive behavioural intervention for the management of low back pain in primary care: Back Skills Training Trial.

BACKGROUND: Low back pain (LBP) is a major public health problem. Risk factors for the development and persistence of LBP include physical and psychological factors. However, most research activity has focused on physical solutions including manipulation, exercise training and activity promotion. METHODS/DESIGN: This randomised controlled trial will establish the clinical and cost-effectiveness of a group programme, based on cognitive behavioural principles, for the management of sub-acute and chronic LBP in primary care. Our primary outcomes are disease specific measures of pain and function. Secondary outcomes include back beliefs, generic health related quality of life and resource use. All outcomes are measured over 12 months. Participants randomised to the intervention arm are invited to attend up to six weekly sessions each of 90 minutes; each group has 6-8 participants. A parallel qualitative study will aid the evaluation of the intervention. DISCUSSION: In this paper we describe the rationale and design of a randomised evaluation of a group based cognitive behavioural intervention for low back pain.

Personal meanings in the construction of need for total knee replacement surgery.

This study explores patients' personal meanings of knee osteoarthritis (OA) and total knee replacement (TKR). Personal meanings are important because decisions regarding the need for TKR do not seem to be explained by symptoms alone. A total of 18 semi-structured interviews were conducted with a purposive sample of respondents who were listed for TKR at one UK specialist orthopaedic hospital, and who had lower than average disease burden according to standard quantitative criteria. Data were analysed using interpretive phenomenological analysis. Several themes related to need for TKR emerged: adoption of the medical model, a person's social network, pain, functional loss, feelings of vulnerability, dependency, low mood and fatigue, ideas related to disease progression and expectations of TKR. Results suggest that the decision to undergo TKR is not related to symptoms alone, but to personal meanings. Some of these personal meanings may not be useful in accurately assessing the need for TKR, and may result in mis-targeting of treatment. It is important for health professionals to explore and tackle personal meanings when considering treatment. In particular, it may be important to consider gender differences that may influence when men and women are listed for TKR. For example: women may be less likely to discuss treatment options with their doctor; they may be more likely to have heard negative examples of TKR from friends or family; they may be more likely to discuss pain and mobility issues than activities requiring higher function; and they may be more likely to discuss the effect on their mood and the emotional impact of OA.

Evidence-based clinical guidelines: a new system to better determine true strength of recommendation.

RATIONALE, AIMS AND OBJECTIVES: Clinical practice guidelines often grade the 'strength' of their recommendations according to the robustness of the supporting research evidence. The existing methodology does not allow the strength of recommendation (SOR) to be upgraded for recommendations for which randomized controlled trials are impractical or unethical. The purpose of this study was to develop a new method of determining SOR, incorporating both research evidence and expert opinion. METHODS: A Delphi technique was employed to produce 10 recommendations for the role of exercise therapy in the management of osteoarthritis of the hip or knee. The SOR for each recommendation was determined by the traditional method, closely linked to the category of research evidence found on a systematic literature search, and on a visual analogue scale (VAS). Recommendations were grouped A-D according to the traditional SOR allocated and the mean VAS calculated. Difference across the groups was assessed by one-way ANOVA variance analysis. RESULTS: Mean VAS scores for the traditional SOR groups A-D and one proposition which was 'not recommended' showed significant linearity on one-way ANOVA. However, certain recommendations which, for practical reasons, could not assessed in randomized controlled trials and therefore could not be recommended strongly by the traditional methodology, were allocated a strong recommendation by VAS. CONCLUSIONS: This new system of grading strength of SOR is less constrained than the traditional methodology and offers the advantage of allowing SOR for procedures which cannot be assessed in RCTs for practical or ethical reasons to be upgraded according to expert opinion.

The Training and Support Programme for parents of children with Cerebral Palsy: a process evaluation.

The aim of this process evaluation was to better understand the practice implications of an intervention designed to train parents to massage their children with Cerebral Palsy. Seventy parents completed the Training and Support Programme (TSP) with their children. Data were collected by Home Record Sheets and Observation Sheets completed by parents and therapists, respectively. Implications for practice included therapist's sensitivity to the needs of each parent and child, the need for flexibility in the delivery of the TSP, and the implementation of strategies to ensure the TSP ran smoothly. Such strategies may be of value in the delivery of other similar interventions.

The influence of the training and support programme on the self-efficacy and psychological well-being of parents of children with disabilities: a controlled trial.

The purpose of the study was to examine the effectiveness of an intervention for parents of children with disabilities in a controlled study focusing on parents' self-efficacy, psychological well-being and perceptions of change in children's sleeping, eating and mobility. The Training and Support Programme (TSP) was designed to equip parents with a simple massage skill that they could use with their children in the home environment. Parents were trained in massage by therapeutic massage therapists in 8-weekly sessions, each lasting 1h. The sample comprised 95 parents (49 in the Intervention Group, 46 in the Waiting-list Control Group) who attended the TSP with their children. Data were collected by self-administered questionnaires at baseline (before commencing the TSP), and at 8-week follow-up. The TSP demonstrated statistically significant positive effects on parents' anxious mood, self-efficacy for managing children's psychosocial well-being, self-efficacy in giving massage therapy, and perceptions of children's sleeping and eating. Relatively high levels of psychological distress were found among parents, particularly mothers. Overall, findings suggest that wider implementation of the Programme is warranted, and greater attention needs to paid to the psychological well-being of parents caring for children with disabilities.

Self-management training for people with chronic disease: a shared learning experience.

The lay-led, Chronic Disease Self-Management Course (CDSMC) is designed to train people in self-management. The present study focused on the experiences of a group of participants attending the CDSMC. Data were collected via interviews with nine participants four months and twelve months after attending the CDSMC. Results showed that participants appreciated the opportunity to share experiences in a reassuring environment. Goal setting was critical in making changes. The CDSMC provided participants with the confidence to select the self-management technique that would meet their needs at a given point in time.

Exploring a massage intervention for parents and their children with autism: the implications for bonding and attachment.

This exploratory study aimed to address two questions: (1) What does touch mean between parents and their children with autism on completion of a massage intervention? (2) Do parents feel that their relationship with their children has changed on completion of a massage intervention? Fourteen parents agreed to be interviewed. Data were collected before the massage intervention (baseline), immediately after the massage intervention and 16 weeks from baseline and were analysed using interpretative phenomenological analysis. At baseline, parents felt distressed that they felt unable to get 'close' to their children. After the intervention, parents reported feeling physically and emotionally closer to their children. Children expressed a range of cues to initiate massage at home. These benefits were maintained at follow-up for parents who continued to use massage at home. In conclusion, giving massage to children with autism may help to enhance the emotional bond between parent and child.

Positive touch, the implications for parents and their children with autism: an exploratory study.

The aims of this study were (1) to explore the experience of touch between parents and children with autism before, during, and after a Training and Support Programme (TSP), and (2) to develop a model of the process of touch therapy for this group of parents and children. Fourteen parents and their children agreed to take part in the study. Five of these parents withdrew. Reasons for withdrawal included personal circumstances and ill health. Data were collected by semi-structured interviews with parents before attending the TSP and Home Record Sheets completed by parents during the TSP. Results indicate that before the TSP touch was experienced as out of parents' control. During the TSP, the experience of touch appeared to change. A key benefit gained by parents was the feeling of closeness to children. The key benefits gained by children were perceived by the parents as improved sleep patterns, children were more relaxed after receiving the massage and appeared more amenable to touch. Of interest was children's request for massage at home. At 16-week follow-up both parents and children continue to enjoy giving and receiving touch therapy, respectively.

Impact and therapy of osteoarthritis: the Arthritis Care OA Nation 2012 survey.

Osteoarthritis (OA) is the fastest growing cause of disability worldwide. The aim of this study was to understand the impact of OA on individuals and to explore current treatment strategies. An online UK-wide survey of people with self-reported OA was conducted, composed of 52 questions exploring the impact of OA, diagnosis and treatment, the role of health professionals and self-management. Four thousand forty-three people were invited with 2,001 respondents (49 % response, 56 % women; mean age 65 years). Fifty-two percent reported that OA had a large impact on their lives. Fifteen percent of respondents had taken early retirement on average 7.8 years earlier than planned. In consultations with general practitioners, only half reported a discussion on pain; fewer reported discussing their fears (21 %) or management goals (15 %). Nearly half (48 %) reported not seeking medical help until pain was frequently unbearable. Oral analgesics (62 %), topical therapies (47 %), physiotherapy (38 %) and steroid injections (28 %) were commonly used. The majority (71 %) reported varying degrees of persistent pain despite taking all prescribed medication. Although 64 % knew that increasing exercise was important, only 36 % acted on this knowledge; 87 % who increased exercise found it beneficial. Over half had future concerns related to mobility (60 %), maintaining independence (52 %) and coping with everyday activities (51 %). OA had significant individual economic impact especially on employment. Current treatment strategies still leave most people in pain with significant fears for the future. There is considerable opportunity to improve the holistic nature of OA consultations especially in provision of information and promotion of self-management strategies.

A training and support programme for caregivers of children with disabilities: an exploratory study.

Our aim was to conduct an exploratory evaluation of an intervention designed to equip caregivers with simple massage skills that they could use with their children in the home. The sample comprised 82 parents and 82 children with disabilities. Data were collected by self-administered questionnaires at two points in time: baseline, and immediately post-programme (after 8 weeks). Qualitative data were collected through Home Record Sheets and Monitoring Forms completed by caregivers and therapists, respectively. Results revealed statistically significant improvements in caregivers' self-efficacy in their ability to conduct massage, in managing children's psychosocial wellbeing and in levels of anxious mood. Caregiver reports of children's sleeping patterns and eating showed significant improvements. Qualitative data confirmed that caregivers believed that children's sleep patterns improved and also suggested improvements in children's bowel movements, awareness of their bodies, movement, and communication; factors that could be included in future evaluation.

Self-management approaches for people with chronic conditions: a review.

The purpose of this paper is to provide an overview of self-management approaches for people with chronic conditions. The literature reviewed was assessed in terms of the nature of the self-management approach and the effectiveness. Findings are discussed under the headings of: chronic conditions targeted, country where intervention was based, type of approach (e.g. format, content, tutor, setting), outcomes and effectiveness. The last of these focused on reports of randomised controlled studies.

Play Hurt, Live Hurt: Living with and Managing Osteoarthritis from the Perspective of Ex-professional Footballers.

Personal accounts of living with osteoarthritis (OA) are rare and qualitative research has focused mainly on the experiences of women. As yet no studies have focused solely on the experience of men living with OA. The primary focus of this study was the experience of living with OA from the perspective of ex-professional footballers in the UK using semi-structured interviews with interpretative phenomenological analysis. Participants identified the cause of their OA to be associated with aspects of their playing career. Living with OA involved pain, surgery, medication and restricted mobility. Feelings of frustration were often associated with disruption to work, social and leisure activities. Participants' experiences and memories of playing professional football were important in helping them manage the threat of the disease. The findings have provided an insight into the experience of ex-professional footballers as they seek to accommodate to a life of pain, disability and functional impairment.

'Kiss, cuddle, squeeze': the experiences and meaning of touch among parents of children with autism attending a Touch Therapy Programme.

The aim of this qualitative study was to explore the experiences and meaning of touch between parents and children with autism before and after attending a Touch Therapy Programme. The sample comprised 12 parents (1 father and 11 mothers) of children (1 female and 11 male) with autism. Parents were interviewed before and immediately after the 8-week programme. Pre-programme results suggested that children were controlling the experience of touch. Parents felt 'hurt' in response to the 'aloof nature of autism, and natural parenting instincts (e.g. spontaneous cuddles) were restricted. Post-programme results suggested that children appeared to tolerate touch. Parents reported that routine tasks (e.g. dressing) were accomplished more easily and that children appeared generally more relaxed. Parents reported feeling 'closer' to their children and felt that the touch therapy had opened a communication channel between themselves and their children.

Increasing touch between parents and children with disabilities: preliminary results from a new programme.

Initial findings are presented from a specially devised touch therapy programme for parents of children with disabilities. A total of 42 parent children have completed the programme. Therapists teach parents simple massage techniques during one-hour sessions held once a week for eight weeks. The children had a range of disabilities including cerebral palsy, asthma, sensory impairments and Down's syndrome. Parents reported improvements in children's muscle tone, joint mobility, sleep patterns, bowel movements and response to other forms of therapy, e.g. physiotherapy. Parents also reported that they themselves had benefited, e.g. by feeling "closer" to their child and less stressed.

Coping using positive reinterpretation in parents of children with cerebral palsy.

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.

The psychosocial well-being of parents of children with cerebral palsy: a comparison study.

PURPOSE: 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. METHOD: 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. RESULTS: 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. CONCLUSIONS: 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.