The impact of prior care experience on nursing students' compassionate values and behaviours: A mixed methods study.

BACKGROUND: Compassion is critical to the provision of high-quality healthcare and is foregrounded internationally as an issue of contemporary concern. Paid care experience prior to nurse training has been suggested as a potential means of improving compassion, which has been characterised by the values and behaviours of care, compassion, competence, communication, courage, and commitment. There is however a dearth of evidence to support the effectiveness of prior care experience as a means of improving compassion in nursing. OBJECTIVE: To explore the impact of paid prior care experience on the values and behaviours of pre-registration nursing students indicated as characterising compassionate care. DESIGN: Longitudinal mixed methods design employing a modified concurrent triangulation strategy, comprising two work packages. Work package 1 was qualitative, and work package 2 adopted a concurrent embedded strategy with a dominant quantitative component. Research is reported in accordance with the Good Reporting of a Mixed Methods Study framework. SETTING(S): Three United Kingdom universities. PARTICIPANTS: Pre-registration nursing students attending one of three universities, and individuals who had previously participated in a Health Education England paid prior care experience pilot. Participant numbers at time point 1 were questionnaires n = 220, telephone interviews n = 10, and focus groups n = 8. METHODS: Work package 1 consisted of longitudinal semi-structured telephone interviews. Work package 2 comprised validated online questionnaires measuring emotional intelligence, compassion satisfaction and fatigue, resilience, psychological empowerment, and career commitment (as proxies of compassionate values and behaviours), and focus groups. Qualitative data were thematically analysed. Quantitative data were analysed via Analysis of Variance in SPSS v 26. RESULTS: Qualitative findings suggest that prior care experience has both positive and negative effects on students' compassionate values and behaviours, however positive effects do not extend to qualification. No statistically significant differences were found in any of the quantitative outcome measures between participants with and without paid prior care experience. A statistically significant increase in compassion fatigue was identified in both groups of participants post-qualification. Paid prior care experience did not prevent participants from experiencing reality shock on becoming a student or on qualification. CONCLUSIONS: There is insufficient evidence of longitudinal beneficial impact to recommend paid prior care experience as an effective intervention to foster nursing students' compassionate values and behaviours. These findings do not support mandating a period of paid care experience as a prerequisite for entry into nurse education. REGISTRATION: N/A. Tweetable abstract Insufficient evidence of longitudinal beneficial impact to recommend prior care experience as an effective intervention to foster nursing student compassion @PriorCareExp @Sarah_F_R.

The impact of care experience prior to commencing pre-registration nurse education and training: A scoping review.

OBJECTIVES: Compassion in nursing and interventions to support it are of international relevance and concern. Prior care experience as a prerequisite for entry into pre-registration nurse education is suggested as a means of improving compassion. The impact of prior care experience has not been comprehensively reviewed, therefore the potential effectiveness of prior care experience as a means of improving compassion is unknown. The scoping review question was 'What is known about the impact of care experience prior to commencing pre-registration nurse education and training?' The primary objective was to scope and synthesise existing literature relating to the topic and ascertain key themes pertaining to impact. A secondary objective was to appraise literature, to contextualise findings and assess the state and stage of knowledge and research in the area. DESIGN: The review was guided by Arksey and O'Malley's methodological framework and is reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews Checklist. DATA SOURCES: Health sciences databases CINAHL, Medline and PubMed. METHODS: Databases were searched in February 2019, updated August 2021. Data (study characteristics, findings, methodological observations) were extracted from papers meeting inclusion criteria (including peer-reviewed empirical papers with English language, electronic full-text available) and findings thematically analysed. RESULTS: Forty-five papers from 14 countries were included. The majority (64.4 %) were published in Europe (31.1 % in the United Kingdom) between 2010 and 2021 (69 %), 60 % from 2013. Four qualitative themes (compassionate care, commitment, competence and communication) describe the impact of prior care experience, which was variable. CONCLUSIONS: Evidence to support the effectiveness of prior care experience as a prerequisite for entry into nurse education to improve compassion, is inconsistent and insufficient. The literature displays methodological limitations and conclusions should be interpreted in light of these caveats. Recommendations are made for future research, to improve quality and comparability.

"Pacing does help you get your life back": The acceptability of a newly developed activity pacing framework for chronic pain/fatigue.

OBJECTIVES: We have developed and feasibility tested an activity pacing framework for clinicians to standardise their recommendations of activity pacing to patients with chronic pain/fatigue. This study aimed to explore the acceptability and fidelity to this framework in preparation for a future trial of activity pacing. DESIGN: Acceptability and fidelity were explored using semi-structured interviews. Data were analysed using framework analysis. PARTICIPANTS: Patients who attended a rehabilitation programme for chronic pain/fatigue underpinned by the framework, and clinicians (physiotherapists and psychological wellbeing practitioners) who led the programmes. RESULTS: Seventeen interviews were conducted, involving 12 patients with chronic pain/fatigue and five clinicians. The framework analysis revealed four deductive themes: (1) Acceptability of the activity pacing framework, (2) Acceptability of the feasibility study methods, (3) Processes of change and (4) Barriers and facilitators to activity pacing; and one inductive theme: (5) Perspectives of patients and clinicians. CONCLUSIONS: The activity pacing framework appeared acceptable to patients and clinicians, and adherence to the framework was demonstrated. Processes of behaviour change included patients' regulation of activities through activity pacing. Barriers to pacing included work/social commitments and facilitators included identifying the benefits of pacing on symptoms. Different perspectives emerged between clinicians and patients regarding interpretations of symptom-contingent and quota-contingent strategies. The framework recognises fluctuations in symptoms of chronic pain/fatigue and encourages a quota-contingent approach with flexibility. Future work will develop a patient friendly guide ahead of a clinical trial to explore the effects of pacing.

A Qualitative Study Exploring International Experiences of Seeking Treatment for Adults With Trichotillomania: A Story of Frustration and Unmet Need.

Trichotillomania (TTM) is a poorly understood disorder with no consensus on aetiology or epidemiology; often overlooked due to high comorbidity rates. Cross-cultural qualitative research is sparse; therefore, an international qualitative study was conducted. A generic qualitative approach with thematic analysis was used to explore data from asynchronous email interviews. The aim of this article is to report participant experiences of seeking treatment. Using a sample of 20 adults (18-55 years) from 15 different countries, this article highlights lack of access and unmet healthcare needs signifying an inadequate supply of TTM expertise globally and the need for more robust clinical guidance.

Testing a newly developed activity pacing framework for chronic pain/fatigue: a feasibility study.

OBJECTIVES: To test the feasibility of using a new activity pacing framework to standardise healthcare professionals' instructions of pacing, and explore whether measures of activity pacing/symptoms detected changes following treatment. DESIGN: Single-arm, repeated measures study. SETTING: One National Health Service (NHS) Pain Service in Northern England, UK. PARTICIPANTS: Adult patients with chronic pain/fatigue, including chronic low back pain, chronic widespread pain, fibromyalgia and chronic fatigue syndrome/myalgic encephalomyelitis. INTERVENTIONS: Six-week rehabilitation programme, standardised using the activity pacing framework. OUTCOME MEASURES: Feasibility was explored via patients' recruitment/attrition rates, adherence and satisfaction, and healthcare professionals' fidelity. Questionnaire data were collected from patients at the start and end of the programme (T1 and T2, respectively) and 3 months' follow-up (T3). Questionnaires included measures of activity pacing, current/usual pain, physical/mental fatigue, depression, anxiety, self-efficacy, avoidance, physical/mental function and quality of life. Mean changes in activity pacing and symptoms between T1-T2, T2-T3 and T1-T3 were estimated. RESULTS: Of the 139 eligible patients, 107 patients consented (recruitment rate=77%); 65 patients completed T2 (T1-T2 attrition rate=39%), and 52 patients completed T3 (T1-T3 attrition rate=51%). At T2, patients' satisfaction ratings averaged 9/10, and 89% attended ≥5 rehabilitation programme sessions. Activity pacing and all symptoms improved between T1 and T2, with smaller improvements maintained at T3. CONCLUSION: The activity pacing framework was feasible to implement and patients' ability to pace and manage their symptoms improved. Future work will employ a suitable comparison group and test the framework across wider settings to explore the effects of activity pacing in a randomised controlled trial. TRIAL REGISTRATION NUMBER: NCT03497585.

Engaging stakeholders to refine an activity pacing framework for chronic pain/fatigue: A nominal group technique.

OBJECTIVES: Due to the current absence of a standardized guide for activity pacing, the concept of pacing is interpreted in various ways by healthcare professionals, patients and researchers. Consequently, the effects of pacing across different conditions are unclear. The present study aimed to undertake the second stage in the development of an activity pacing framework for chronic pain/fatigue. METHODS: The newly developed activity pacing framework was refined using a consensus method. A nominal group technique (NGT) was selected to engage stakeholders to reach agreement on the top 10 priorities for inclusion in the framework and accompanying appendices. Participants included patients with diagnoses of chronic pain/fatigue and healthcare professionals working in fields of chronic pain/fatigue. RESULTS: Ten participants were recruited via purposive sampling: four patients, two physiotherapists, two occupational therapists and two psychological wellbeing practitioners. The top priorities for the pacing framework included a clear definition of pacing, and stating the aims and context of pacing. The appendices were refined as a teaching guide, including priorities of detailing the stages of pacing, the overactivity-underactivity cycle/pain cycle and goal setting. CONCLUSIONS: Incorporating a diverse panel of stakeholders was an effective and inclusive method to refine the activity pacing framework. The framework has been purposefully designed for wider use across patients with chronic pain/fatigue and by various healthcare professionals. The framework provides a comprehensive definition, background and manual for healthcare professionals to instruct activity pacing. Further study will test the clinical usability of the framework, to enable the standardization of activity pacing in future investigations.

Survey of activity pacing across healthcare professionals informs a new activity pacing framework for chronic pain/fatigue.

INTRODUCTION: Activity pacing is considered a key component of rehabilitation programmes for chronic pain/fatigue. However, there are no widely used guidelines to standardize how pacing is delivered. This study aimed to undertake the first stage in developing a comprehensive evidence-based activity pacing framework. METHODS: An online survey across pain/fatigue services in English National Health Service trusts explored healthcare professionals' opinions on the types/uses of pacing, aims, facets and perceived effects. Data were analysed using descriptive statistics for closed-ended questions and thematic analysis for open-ended questions. Purposeful recruitment with a snowball effect engaged 92 healthcare professionals (physiotherapists, occupational therapists, nurses, doctors and psychologists) to the study. RESULTS: Pacing was highly utilized, with perceived long-term benefits for patients (n = 83, 90.2% healthcare professionals instructed pacing). The most endorsed aim of pacing was "achievement of meaningful activities" (24.5% of ranked votes). The least endorsed aim was "to conserve energy" (0.1% of ranked votes). The most frequently supported facet of pacing was "breaking down tasks" (n = 91, 98.9%). The least supported facet was "stopping activities when symptoms increase" (n = 6, 6.5%). Thematic analysis showed recurring themes that pacing involved flexibility and sense of choice. CONCLUSIONS: Pacing is a multidimensional coping strategy and complex behaviour. The message is clear that pacing should enable increases in meaningful activities, as opposed to attempting to avoid symptoms. The survey findings have informed the development of an activity pacing framework to guide healthcare professionals on the multiple components of pacing. This will help to standardize and optimize treatments for chronic pain/fatigue and enable future investigations.

The concept of compassion within UK media-generated discourse: A corpus-informed analysis.

AIMS AND OBJECTIVES: To examine how the concept of compassion is socially constructed within UK discourse, in response to recommendations that aspiring nurses gain care experience prior to entering nurse education. BACKGROUND: Following a report of significant failings in care, the UK government proposed prior care experience for aspiring nurses as a strategy to enhance compassion amongst the profession. Media reporting of this generated substantial online discussion, which formed the data for this research. There is a need to define how compassion is constructed through language as a limited understanding exists, of what compassion means in health care. This is important, for any meaningful evaluation of quality, compassionate practices. DESIGN: A corpus-informed discourse analysis. METHODS: A 62,626-word corpus of data was analysed using Laurence Anthony software "AntCon", a free corpus analysis toolkit. Frequent words were retrieved and used as a focal point for further analysis. Concordance lines were computed and analysed in the context of which frequent word-types occurred. Patterns of language were revealed and interpreted through researcher immersion. RESULTS: Findings identified that compassion was frequently described in various ways as a natural characteristic attribute. A pattern of language also referred to compassion as something that was not able to be taught, but could be developed through the repetition of behaviours observed in practice learning. In the context of compassion, the word-type "nurse" was used positively. CONCLUSION: This study adds to important debates highlighting how compassion is constructed and defined in the context of nursing. Compassion is constructed as both an individual, personal trait and a professional behaviour to be learnt. Educational design could include effective interpersonal skills training, which may help enhance and develop compassion from within the nursing profession. Likewise, ways of thinking, behaving and communicating should also be addressed by established practitioners to maintain compassionate interactions between professionals as well as nurse-patient relationships. Future research should focus on how compassionate practice is defined by both health professionals and patients. RELEVANCE TO CLINICAL PRACTICE: To maintain nursing as an attractive profession to join, it is important that nurses are viewed as compassionate. This holds implications for professional morale, associated with the continued retention and recruitment of the future workforce. Existing ideologies within the practice placement, the prior care experience environment, as well as the educational and organisational design, are crucial factors to consider, in terms of their influences on the expression of compassion in practice.

Activity pacing: moving beyond taking breaks and slowing down.

This brief communication responds to the paper by Jeong and Cho (Qual Life Res 26(4):903-911, 2017) that has described activity pacing in limited terms of adjusting activities through going at a slower rate and taking breaks. Activity pacing was reported as not involving goal setting, in comparison to other strategies for long-term conditions such as Acceptance and Commitment Therapy. This brief communication aims to challenge this limited perception of activity pacing in light of numerous studies that recognise pacing to be a more complex strategy. Pacing is considered to be a multifaceted coping strategy, including broad themes of not only adjusting activities, but also planning activities, having consistent activity levels, acceptance of current abilities and gradually increasing activities, and one that includes goal setting as a key facet. It is essential that pacing is both defined and measured as a multifaceted strategy in order to assess the outcomes of pacing, and for meaningful comparisons with other strategies regarding efficacy for the management of long-term conditions.

Activity Pacing is Associated With Better and Worse Symptoms for Patients With Long-term Conditions.

BACKGROUND: Activity pacing has been associated with both improved and worsened symptoms, and its role in reducing disability among patients with long-term conditions has been questioned. However, existing studies have measured pacing according to unidimensional subscales, and therefore the empirical evidence for pacing as a multifaceted construct remains unclear. We have developed a 26-item Activity Pacing Questionnaire (APQ-26) for chronic pain/fatigue containing 5 themes of pacing: activity adjustment, activity consistency, activity progression, activity planning, and activity acceptance. OBJECTIVE: To assess the associations between the 5 APQ-26 pacing themes and symptoms of pain, physical fatigue, depression, avoidance, and physical function. METHODS: Cross-sectional questionnaire study design. Data analyzed using multiple regression. PARTICIPANTS: A total of 257 adult patients with diagnoses of chronic low back pain, chronic widespread pain, fibromyalgia, and chronic fatigue syndrome/myalgic encephalomyelitis. RESULTS: Hierarchical multiple regression showed that activity adjustment was significantly associated with increased physical fatigue, depression, and avoidance, but decreased physical function (all Ps≤0.030). Activity consistency was associated with decreased pain, physical fatigue, depression, and avoidance, but increased physical function (all Ps≤0.003). Activity planning was associated with reduced physical fatigue (Ps=0.025) and activity acceptance was associated with increased avoidance (Ps=0.036). CONCLUSIONS: Some APQ-26 pacing themes were associated with worse symptoms and others with symptom improvement. Specifically, pacing themes involving adjusting/reducing activities were associated with worse symptoms, whereas pacing themes involving undertaking consistent activities were associated with improved symptoms. Future study will explore the causality of these associations to add clarification regarding the effects of pacing on patients' symptoms.

The Maintaining Musculoskeletal Health (MAmMOTH) Study: Protocol for a randomised trial of cognitive behavioural therapy versus usual care for the prevention of chronic widespread pain.

BACKGROUND: Cognitive behavioural therapy (CBT) has been shown to improve outcomes for patients with fibromyalgia, and its cardinal feature chronic widespread pain (CWP). Prediction models have now been developed which identify groups who are at high-risk of developing CWP. It would be beneficial to be able to prevent the development of CWP in these people because of the high cost of symptoms and because once established they are difficult to manage. We will test the hypothesis that among patients who are identified as at high-risk, a short course of telephone-delivered CBT (tCBT) reduces the onset of CWP. We will further determine the cost-effectiveness of such a preventative intervention. METHODS: The study will be a two-arm randomised trial testing a course of tCBT against usual care for prevention of CWP. Eligible participants will be identified from a screening questionnaire sent to patients registered at general practices within three Scottish health boards. Those returning questionnaires indicating they have visited their doctor for regional pain in the last 6 months, and who have two of, sleep problems, maladaptive behaviour response to illness, or high number of somatic symptoms, will be invited to participate. After giving consent, participants will be randomly allocated to either tCBT or usual care. We aim to recruit 473 participants to each treatment arm. Participants in the tCBT group will have an initial assessment with a CBT therapist by telephone, then 6 weekly sessions, and booster sessions 3 and 6 months after treatment start. Those in the usual care group will receive no additional intervention. Follow-up questionnaires measuring the same items as the screening survey questionnaire will be sent 3, 12 and 24 months after start of treatment. The main outcome will be CWP at the 12 month questionnaire. DISCUSSION: This will be the first trial of an intervention aimed at preventing fibromyalgia or CWP. The results of the study will help to inform future treatments for the prevention of chronic pain, and aetiological models of its development. TRIAL REGISTRATION: ClinicalTrials.gov ID: NCT02668003URL: Please check that the following URLs are working. If not, please provide alternatives: NCT02668003Alternative is: https://www.clinicaltrials.gov/ct2/show/NCT02668003> . Date registered: 28-Jan-2016.

Exploring patients' opinions of activity pacing and a new activity pacing questionnaire for chronic pain and/or fatigue: a qualitative study.

OBJECTIVE: Despite the frequent recommendation of activity pacing as a coping strategy for patients with chronic pain and/or fatigue, pacing is interpreted in different ways and there is an absence of a widely accepted pacing scale. We have developed a new Activity Pacing Questionnaire (APQ). The aims of this study were to explore patients' views and beliefs about the concept of pacing, together with the acceptability of the APQ. DESIGN: Qualitative pragmatic study using semi-structured telephone interviews. Data were analysed using Framework analysis. PARTICIPANTS: 16 adult patients attending secondary care physiotherapy out-patient departments were recruited via purposive sampling. Diagnoses included chronic low back pain, chronic widespread pain, fibromyalgia and chronic fatigue syndrome/myalgic encephalomyelitis. FINDINGS: Pacing emerged as a multifaceted concept from participants' descriptions. The implementation of pacing was influenced by participants' age, the presence of co-morbidities and participants' emotions. The APQ was found to be generally acceptable in comparison to two existing pacing subscales. Participants undertook activities using quota/symptom-contingent approaches. Four behavioural typologies emerged: Task avoidance, Task persistence, Task fluctuation (boom-bust) and Task modification (activity pacing). CONCLUSIONS: The APQ appears to be easy to complete, and acceptable to patients who are attending physiotherapy for the management of long-term conditions. It emerged that individual patients implemented different pacing facets to varying degrees, and that different behavioural typologies were apparent. The relationships between behavioural typologies and facets of pacing warrant further investigation to facilitate the development of effective tailored pacing interventions.

Assessing the Psychometric Properties of an Activity Pacing Questionnaire for Chronic Pain and Fatigue.

BACKGROUND: Therapists frequently advise the use of activity pacing as a coping strategy to manage long-term conditions (eg, chronic low back pain, chronic widespread pain, chronic fatigue syndrome/myalgic encephalomyelitis). However, activity pacing has not been clearly operationalized, and there is a paucity of empirical evidence regarding pacing. This paucity of evidence may be partly due to the absence of a widely used pacing scale. To address the limitations of existing pacing scales, the 38-item Activity Pacing Questionnaire (APQ-38) was previously developed using the Delphi technique. OBJECTIVE: The aims of this study were: (1) to explore the psychometric properties of the APQ-38, (2) to identify underlying pacing themes, and (3) to assess the reliability and validity of the scale. DESIGN: This was a cross-sectional questionnaire study. METHODS: Three hundred eleven adult patients with chronic pain or fatigue participated, of whom 69 completed the test-retest analysis. Data obtained for the APQ-38 were analyzed using exploratory factor analysis, internal and test-retest reliability, and validity against 2 existing pacing subscales and validated measures of pain, fatigue, anxiety, depression, avoidance, and mental and physical function. RESULTS: Following factor analysis, 12 items were removed from the APQ-38, and 5 themes of pacing were identified in the resulting 26-item Activity Pacing Questionnaire (APQ-26): activity adjustment, activity consistency, activity progression, activity planning, and activity acceptance. These themes demonstrated satisfactory internal consistency (Cronbach α=.72-.92), test-retest reliability (intraclass correlation coefficient=.50-.78, P≤.001), and construct validity. Activity adjustment, activity progression, and activity acceptance correlated with worsened symptoms; activity consistency correlated with improved symptoms; and activity planning correlated with both improved and worsened symptoms. LIMITATIONS: Data were collected from self-report questionnaires only. CONCLUSIONS: Developed to be widely used across a heterogeneous group of patients with chronic pain or fatigue, the APQ-26 is multifaceted and demonstrates reliability and validity. Further study will explore the effects of pacing on patients' symptoms to guide therapists toward advising pacing themes with empirical benefits.

Student help seeking from pastoral care in UK high schools: a qualitative study.

BACKGROUND: Little is known about high school students' perceptions of school-based pastoral support. This study aimed to explore this in the context of a high school-based emotional support project. METHODS: Qualitative interviews explored perspectives on help seeking of students (N = 23) and staff (N = 27) in three UK high schools where a pastoral project was introduced. Data were analysed thematically. RESULTS: Student peer groups perceived help seeking as a sign of weakness. However, students valued learning skills in managing emotions and friendships. Staff expressed concerns about students' ability to help seek proactively, and highlighted organisational influences on pastoral support. CONCLUSIONS: Increasing student control over the process, and involving trusted staff, could encourage help seeking in high school. It is possible to access the views of students who do not help seek, to improve understanding of help-seeking behaviour.

Modest association of joint hypermobility with disabling and limiting musculoskeletal pain: results from a large-scale general population-based survey.

OBJECTIVE: To determine the population prevalence of joint hypermobility (JH) and to test the hypothesis that JH would be associated with reporting musculoskeletal pain. METHODS: We conducted a cross-sectional population survey in Aberdeen and Cheshire. A total of 45,949 questionnaires were mailed that assessed JH and the presence, distribution, duration, and severity of musculoskeletal pain. Based on their pain reports, participants were classified as having chronic widespread pain (CWP), some pain, or no pain. Multinominal logistic regression tested the relationship between JH and pain status. Associations were adjusted for age, sex, and other putative confounders. Participants with no pain were the referent category. RESULTS: A total of 12,853 participants (28.0%) returned a questionnaire with complete data; 2,354 participants (18.3%) were classified as hypermobile. A total of 2,094 participants (16.3%) had CWP, 5,801 participants (45.1%) had some pain, and 4,958 participants (38.6%) reported no pain. JH participants were significantly more likely to report CWP than non-JH participants (18.5% versus 15.8%; P < 0.001). After adjusting for age and sex, hypermobile participants were 40% more likely to report the most severe CWP (relative risk ratio [RRR] 1.4, 95% confidence interval [95% CI] 1.1-1.7; P < 0.00). After further adjustments for employment status, smoking, alcohol, and physical activity, JH remained significantly associated with the most severe CWP (RRR 1.6, 95% CI 1.3-2.1; P < 0.000) and some pain (RRR 1.3, 95% CI 1.02-1.6; P = 0.03). CONCLUSION: JH was associated with severe pain; however, this relationship was not specific to CWP. The relationship was relatively modest and may be explained by unmeasured confounding factors such as psychological distress.

The development of an activity pacing questionnaire for chronic pain and/or fatigue: a Delphi technique.

OBJECTIVE: Activity pacing is frequently advised as a coping strategy for the management of chronic conditions (such as chronic low back pain, chronic widespread pain and chronic fatigue syndrome/myalgic encephalomyelitis). Despite anecdotal support for activity pacing, there is limited and conflicting research evidence into the efficacy of this strategy. There is no consensus on the interpretation of 'pacing' due to diverse descriptions, including strategies that encourage both increasing and decreasing activities. Furthermore, at present, there are few validated scales to measure how patients pace their activities. The aim of this study was to undertake the first stage in the development of a comprehensive tool that assesses the multi-faceted nature of pacing among patients with chronic conditions. DESIGN: Three-round Delphi technique. PARTICIPANTS: Expert panel based in the UK including patients and clinicians. RESULTS: The 42 participants who completed three rounds of Delphi included 4 patients, 3 nurses, 26 physiotherapists and 9 occupational therapists. The 38 questions that reached consensus to be included in the questionnaire encompassed a number of different facets of pacing, for example, breaking down tasks, not over-doing activities, and gradually increasing activities. CONCLUSIONS: To our knowledge, this is the first study that has engaged both patients and clinicians in a Delphi technique to develop an activity pacing questionnaire. In contrast to existing pacing scales, our questionnaire appears to contain a number of distinct facets of pacing. Further study is being undertaken to engage patients in the exploration of the validity, reliability and acceptability of the questionnaire.

Pitfalls, perils and payments: service user, carers and teaching staff perceptions of the barriers to involvement in nursing education.

BACKGROUND: There is an impetus to involve service users and carers in the education of nurses and a general consensus in the literature about the benefits that this brings to all involved. Whilst these benefits are well rehearsed in the literature there is little written about the potential barriers to service user and carer involvement in nurse education. OBJECTIVE: The objective of this study was to investigate service users, carers and staff views on the potential barriers to becoming engaged in nurse education. DESIGN: A qualitative study using focus group discussions (FGD) was used to canvas the views of service users, carers and teaching staff. SETTING: A large school of nursing in the North West of England. PARTICIPANTS: 38 service users and carers recruited from the North West of England and 23 nursing and midwifery teachers and lecturers. METHODS: Focus group discussions were employed as the main data collection method. The data were analysed using thematic analysis. RESULTS: Six themes occurred in the data as being negatively associated with potential and actual involvement: not knowing the context of the group, lack of preparation of the group, not being supported, not being allowed to be real, not receiving feedback, not being paid appropriately. CONCLUSIONS: The process of involvement is not without difficulties. These data show that some consideration needs to be given to the potential barriers to involvement if the engagement of service users and carers is to be effective.

Carer and mental health professional views of a psychosocial treatment for negative symptoms in psychosis: a qualitative study.

BACKGROUND: Trials of complex interventions should be preceded by in-depth piloting of the treatment in order to ensure clear definition of critical components and establish feasibility and acceptability. OBJECTIVES: This study aimed to elicit views of extending behavioural activation, an evidence-based treatment for depression, to the negative symptoms observed in psychosis from the perspectives of carers of people with mental health problems and mental health professionals. DESIGN: Qualitative study. SETTING: School of Nursing, Midwifery and Social Work and carer support organisation, North West of England, United Kingdom. PARTICIPANTS: Fifteen participants were recruited from a local carer support group. Nineteen mental health professionals were recruited from post-registration university based programmes. METHODS: We used focus groups and semi-structured interviews. Thematic analysis using a constant comparative approach was employed to capture key concepts and themes. RESULTS: There was support for behavioural activation for negative symptoms in psychosis from some mental health workers and many of the carers; however both groups identified barriers to its implementation. Professionals highlighted internal factors, the difficulty in engaging people with negative symptoms in psychosocial treatments and services more broadly while carers identified a number of external, practical barriers. For those who saw some utility in the treatment approach, the benefit of expanding the treatment to include community based sessions as well as formal behavioural activation meetings were recognised. However, a number of mental health professionals remained sceptical as to its potential to reduce negative symptoms. Professional and carer views generally concurred in relation to family involvement, indicating that restricted engagement could be helpful, but that further participation might actually be counterproductive. CONCLUSIONS: Acceptability for many carers and some professionals was evident and support further evaluation of behavioural activation for negative symptoms. Significant issues to be addressed include the balance of formal talking based sessions and community based sessions to support activation for people with negative symptoms and mental health professional pessimism in relation to this symptom cluster. The current study supports the phased development and careful piloting of complex healthcare interventions before progression to large scale evaluation.

Clinician views of referring people with negative symptoms to outcome research: a questionnaire survey.

This paper reports on a survey of mental health clinician views of including people with psychosis and negative symptoms in outcome research. A questionnaire was forwarded to clinicians (the majority of whom were mental health nurses) completing post-registration undergraduate and postgraduate degree courses in psychosocial interventions for psychosis. Fifty questionnaires were returned (a response rate of 84.7%). A total of 47% of respondents indicated that they might refrain from offering this group as potential participants to clinical trials. Thematic analysis suggests views that negative symptoms are not amenable to treatment inform such decisions. The results highlight the potential difficulties faced by researchers investigating new treatments for people with negative symptoms, and suggest further exploration of clinician views of referring this group to research and psychosocial treatments is warranted.