'You're kind of left to your own devices': a qualitative focus group study of patients with breast, prostate or blood cancer at a hospital in the South West of England, exploring their engagement with exercise and physical activity during cancer treatment and in the months following standard care.

OBJECTIVES: The aim of this study was to explore the experiences of patients with breast, prostate or blood cancer, regarding their (1) engagement with exercise and physical activity during treatment and in the months following standard care, and (2) the meanings attached to these lifestyle behaviours. DESIGN: A qualitative study using focus groups. The groups were audio recorded, transcribed and analysed using Framework analysis. SETTING: A hospital-based cancer treatment centre in the South-West of England. PARTICIPANTS: Eighteen people who had either completed treatment or were currently on maintenance therapy for breast, prostate or blood cancer (non-Hodgkin lymphoma or Hodgkin lymphoma). RESULTS: Participants reported treatment limiting their ability to engage in exercise and physical activity. However, participants were aware of the physiological, emotional and social benefits of exercise and expressed a desire to maintain a physically active lifestyle before, during and after treatment. They noted a lack of concrete guidance and appropriate exercise classes for people with cancer and felt poorly informed about the type, intensity, duration and frequency of exercise they should be undertaking. As such, participants reported making decisions on their own, relying on their intuition and listening to their bodies to gauge whether they were doing enough exercise (or not). CONCLUSIONS: Participants were aware of the benefits of a physically active lifestyle during and following cancer treatment, but were not familiar with exercise and physical activity guidelines for people living with and beyond cancer. There is a need for healthcare professionals, academics and policy makers to determine how exercise and physical activity can be supported in clinical settings in realistic and meaningful ways accommodating individual patient circumstances.

The experiences of cancer patients within the material hospital environment: Three ways that materiality is affective.

Improving the patient experience is widely recognised as an important goal in the delivery of high-quality healthcare. This study contributes to this goal with a particular focus on the role of the material hospital environment for patients being treated for cancer. Extending the burgeoning literature utilising materialist theoretical approaches in social science and medicine, we report on qualitative data with 18 participants who had received cancer treatment from one UK hospital. Our analysis offers a typology of ways in which the material hospital environment is affective: through patients' direct intra-actions with nonhuman materiality; through providing shared spaces within which human-human assemblages are actualised; and through being the material component of the practices of treatment. Within each process in this typology, the analysis highlights how the affective feeling states which play a critical role in patient wellbeing are in many ways contingent, fluid and context-sensitive. Amidst ambitions to improve the patient experience, these findings underline the significance of materialities of care and offer a broad explanatory typology with analytic and practical potential for healthcare staff, patient groups, architects and designers.

The presence of psychological trauma symptoms in resuscitation providers and an exploration of debriefing practices.

INTRODUCTION: Witnessing traumatic experiences can cause post-traumatic stress disorder (PTSD). The true impact on healthcare staff of attending in-hospital cardiac arrests (IHCAs) has not been studied. This cross-sectional study examined cardiac arrest debriefing practices and the burden of attending IHCAs on nursing and medical staff. METHODS: A 33-item questionnaire-survey was sent to 517 doctors (of all grades), nurses and health-care assistants (HCAs) working in the emergency department, the acute medical unit and the intensive care unit of a district general hospital between April and August 2018. There were three sections: demographics; cardiac arrest and debriefing practices; trauma-screening questionnaire (TSQ). RESULTS: The response rate was 414/517 (80.1%); 312/414 (75.4%) were involved with IHCAs. Out of 1463 arrests, 258 (17.6%) were debriefed. Twenty-nine of 302 (9.6%) staff screened positively for PTSD. Healthcare assistants and Foundation Year 1 doctors had higher TSQ scores than nurses or more senior doctors (p = 0.02, p = 0.02, respectively). Debriefing was not associated with PTSD risk (p = 0.98). Only 8/67 (11.9%) of resuscitation leaders had prior debriefing training. CONCLUSIONS: Nearly 10% of acute care staff screened positively for PTSD as a result of attending an IHCA, with junior staff being most at risk of developing trauma symptoms. Very few debriefs occurred, possibly because of a lack of debrief training amongst cardiac arrest team leaders. More support is required for acute care nursing and medical staff following an IHCA.

Situating pain in a more helpful place.

Milton Cohen et al. proposed a revision of the IASP definition of pain of 1979. This commentary summarizes, why this redefinition is necessary, appropriate, and timely.

Understanding the link between feelings of mental defeat, self-efficacy and the experience of chronic pain.

OBJECTIVES: 'Mental defeat' (MD) has been identified among people with chronic pain as a type of self-processing related to social role and rank. Research has linked it to anxiety, pain interference and functional disability. The relationship between MD and other cognitive constructs, such as hopelessness and depression, remains poorly understood. This study considers the association between MD, pain symptomatology and self-efficacy in the context of other cognitive factors. METHODS: In total, 59 participants completed a questionnaire pack assessing anxiety, depression, hopelessness, pain catastrophising and MD in order to examine the relationship with pain symptomatology and self-efficacy. RESULTS: Linear multiple regression analyses showed that anxiety was most strongly associated with pain symptomatology, accounting for 26% of the variance, while catastrophising showed the strongest association with sensory pain and MD the strongest association with affective pain. Finally, MD was found to be strongly associated with pain-related self-efficacy, accounting for 47% of the variance. CONCLUSION: This research has demonstrated the potential importance of assessing MD in chronic pain patients, suggesting that targeting these cognitions during interventions and therapy could be valuable. Furthermore, the study indicates that MD differs from related cognitive constructs involved in pain, such as depression, hopelessness and catastrophising.

Better safe than sorry? Frequent attendance in a hospital emergency department: an exploratory study.

INTRODUCTION: Pain accounts for the majority of attendances to the Emergency Department (ED), with insufficient alleviation of symptoms resulting in repeated attendance. People who frequently attend the ED are typically considered to be psychologically and socially vulnerable in addition to experiencing health difficulties. This service development study was commissioned to identify the defining characteristics and unmet needs of frequent attenders (FAs) in a UK acute district general hospital ED, with a view to developing strategies to meet the needs of this group. METHODS: A mixed-methods multi-pronged exploratory approach was used, involving staff interviews, focus groups, business data and case note analysis. RESULTS: Findings reflect an absence of a coherent approach to meeting the needs of FAs in the ED, especially those experiencing pain. FAs to this ED tend to be vulnerable, complex and report significant worry and anxiety. Elevated anxiety on the part of the patient may be contributing to a 'better safe than sorry' culture within the ED and is reported to bear some influence on the clinical decision-making process. DISCUSSION: It is recommended that a systemic approach is taken to improve the quality and accessibility of individualised care plans, provision of patient education, psychological care and implementation of policies and procedures. Change on an organisational level is likely to improve working culture, staff satisfaction and staff relationships with this vulnerable group of patients. A structured care pathway and supportive changes are likely to lead to economic benefits. Further research should build on findings to implement and test the efficacy of these interventions.

Interpretative phenomenological analysis as a useful methodology for research on the lived experience of pain.

Interpretative phenomenological analysis (IPA) is a qualitative approach which aims to provide detailed examinations of personal lived experience. It produces an account of lived experience in its own terms rather than one prescribed by pre-existing theoretical preconceptions and it recognises that this is an interpretative endeavour as humans are sense-making organisms. It is explicitly idiographic in its commitment to examining the detailed experience of each case in turn, prior to the move to more general claims. IPA is a particularly useful methodology for examining topics which are complex, ambiguous and emotionally laden. Pain is a prime exemplar of such a phenomenon: elusive, involving complex psycho-somatic interactions and difficult to articulate. In addition to the 1998 article, published in this Special Issue, two further papers are suggested that the interested reader might wish to look out for.

It's not fair: an Interpretative Phenomenological Analysis of discourses of justice and fairness in chronic pain.

Quantitative research suggests that perceiving injustice can impact negatively upon physical and psychological health in chronic pain. However, little is known about the experience and perceptions of injustice in this context. This study examines the phenomenology of justice and injustice in chronic pain. Fifteen chronic pain sufferers recruited from General Practices in upper, middle and lower socioeconomic areas participated in one of three focus group discussions. Semi-structured interviews were conducted to interrogate justice-related conceptions. All discussions were observed, audio-recorded, transcribed verbatim and subjected to Interpretative Phenomenological Analysis. The dominant theme of the upper socioeconomic group was 'seeking equality'. For the middle socioeconomic group the dominant theme was 'battle for quality of life' and for the lower socioeconomic group the dominant theme was 'the unfair advantage of others'. It is concluded that this group of chronic pain sufferers prioritize justice-related issues in terms of what is dominant to their social concerns and personal needs.

Assessing the properties of the WHOQOL-Pain: quality of life of chronic low back pain patients during treatment.

OBJECTIVES: Assessing subjective, patient-reported outcomes such as quality of life (QoL) is essential to health care research. This study aimed to assess the properties of a QoL measure relating to pain and discomfort: the WHOQOL-Pain. METHOD: Chronic low back pain patients (n=133) completed the WHOQOL-Pain, SF-12, and short-form McGill Pain Questionnaire before treatment started and again 2-4 weeks later. Of these, 76 received a lumbar epidural steroid injection, and 57 were waiting to receive treatment. RESULTS: Overall, there was no significant difference in effect of either epidural injections or no treatment on bringing about an improvement to QoL overtime. Moderate effect sizes were found for 5 facets including pain relief and uncertainty. Small effect sizes were found for 7 facets including vulnerability, fear and worry, anger and frustration. Larger effect sizes were found for those reporting the most improvement in pain. The waiting group reported no significant changes to QoL but small changes for uncertainty. Three of the four new facets were sensitive to change and test-retest reliability (stability) was confirmed in three. DISCUSSION: Although this study was not designed to test treatment effectiveness, the WHOQOL-Pain enables patients to report changes to important aspects of QoL during many diverse interventions for relieving pain.

Sex differences in hypothalamic-pituitary-adrenal axis function in patients with chronic pain syndrome.

Chronic pain is often equated with chronic stress yet the relationship between chronic pain and hypothalamic-pituitary-adrenal (HPA) axis activity is poorly understood. The objective of this study was to examine diurnal functioning of the HPA axis in patients with clinically defined non-inflammatory chronic pain syndrome (CPS) compared to controls. The sample consisted of 37 adults with CPS and 47 healthy controls. All participants provided saliva samples at awakening, 12:00, 18:00 and 21:00 h on two consecutive days, as well as completing self-report questionnaires relating to anxiety and depression. The CPS group had a significantly lower overall mean diurnal salivary cortisol concentration compared to the control group (p < 0.01) but no significant differences were found between the two groups for repeated cortisol sampling across the day. However, a three-way interaction of time of day by patient status by sex was found (p < 0.032), with lower cortisol concentration in male patients compared to female patients in the afternoon period. No significant group effect was found for the rate of decline in the circadian rise in cortisol concentration. These data demonstrate that CPS is associated with a degree of hypocortisolemia, particularly in male patients. The altered dynamics of cortisol secretion in CPS in relation to the onset and duration of pain in patients remains to be determined.

Insights into Pain: A Review of Qualitative Research.

Qualitative research exposes and explores important aspects of the pain experience that are inaccessible to other approaches.Qualitative work adopts a different epistemological and ontological perspective to quantitative work.Qualitative research is not well established in the field of pain, but is growing.More interpretative engagement with qualitative data is required.

Estimating bottlenose dolphin (Tursiops truncatus) hearing thresholds from single and multiple simultaneous auditory evoked potentials.

Hearing thresholds were estimated in four bottlenose dolphins by measuring auditory evoked responses to single and multiple sinusoidal amplitude modulated tones. Subjects consisted of two males and two females with ages from 4 to 22 years. Testing was conducted in air using a "jawphone" transducer to couple sound into each subject's lower right jaw. Carrier frequencies ranged from 10 to 160 kHz in one-half octave steps. Amplitude modulated stimuli were presented individually and as the sum of four, five, and nine simultaneous tones with unique carrier and modulation frequencies. Evoked potentials were noninvasively recorded using surface electrodes embedded in silicon suction cups. The presence or absence of an evoked response at each modulation frequency was assessed by calculating the magnitude-squared coherence from the frequency spectra of the recorded sweeps. All subjects exhibited traditional "U-shaped" audiograms with upper cutoff frequencies above 113 kHz. The time required for threshold estimates ranged from 23 to 37 min for single stimuli to 5-9 min for nine simultaneous stimuli. Agreement between thresholds estimated from single stimuli and multiple, simultaneous stimuli was generally good, indicating that multiple stimuli may be used for quick hearing assessment when time is limited.

Being a parent of the adolescent with complex chronic pain: an interpretative phenomenological analysis.

BACKGROUND: Previous quantitative research has shown that parents of adolescents with chronic pain report elevated levels of emotional distress in addition to limitations in social and family functioning. AIM: This study aimed to further explore this parental impact by employing qualitative methodology to investigate parental experiences of caring for an adolescent with chronic pain. METHODS: A sample of 17 parents/carers of adolescents with chronic pain was selected from two UK tertiary clinic sites. Participants were 11 mothers, five fathers, and one grandmother (primary caregiver). Four focus groups with parents/carers were conducted to discuss the impact of caring for an adolescent with chronic pain on the parent/carer. Transcripts were analysed using interpretative phenomenological analysis (IPA). FINDINGS: Data analysis revealed two superordinate themes that captured the extensive, and largely negative, impact of being a parent of an adolescent with chronic pain. These themes were labelled 'struggle for control and coherence' and 'a very different life'. Both themes represent a fundamental parental struggle to adapt to a life very different than expected, a life fraught with uncertainty, fear, distress and loss. CONCLUSIONS: Parents who are unable to achieve the relief of their adolescent's chronic pain and suffering report significant personal distress that is exemplified by the repetitive search for legitimacy of their child's pain in 'diagnosis'. In the absence of diagnosis parents reported an unwelcome suspension in an unusual pattern of parenting, resembling the infant phase of parenting.

Living with a body separate from the self. The experience of the body in chronic benign low back pain: an interpretative phenomenological analysis.

This paper presents an in-depth, idiographic study exploring the personal experience of chronic benign low back pain in relation to the participant's body and sense of self. Semi-structured interviews were conducted with patients and the resultant transcripts subjected to interpretative phenomenological analysis. One theme is presented in detail: 'Living with a body separate from the self', whereby when out of pain the body has little salience to the self yet when in pain it is consciously excluded from the self. The complex and paradoxical relationship between the body, chronic pain and the self is explored and evidence is provided to argue that the embodied unpleasantness of chronic pain involves an assault upon and a defence of a preferred or desirable self. The results are considered in relation to relevant themes in the extant literature.

Pilot study: fibrin sealant in anal fistula model.

PURPOSE: The aim of this study was to investigate the failure of fibrin sealant treatment for fistula-in-ano in an experimental porcine model and to determine histologic changes associated with the sealant and setons. METHODS: Three surgically created fistulas were treated by seton drainage in each of eight male pigs. After 26 days, magnetic resonance imaging was performed and setons were removed. Two pigs were killed as controls for stereologic histologic fistula track assessment. In six, fistulas were curetted, and in four the fistulas were treated with fibrin sealant. In these four sealant and two seton pigs, magnetic resonance imaging was repeated a median of 47.5 days after fistula formation. The pigs were killed and stereologic histologic fistula track examination was performed to determine granulation tissue and fistula lumen volumes. These values were compared among control, seton, and sealant groups over time, and related to fistula volumes derived from magnetic resonance imaging. RESULTS: Sealant was not visible microscopically within tracks, although some sections revealed a foreign body-type reaction. On stereologic assessment, granulation tissue volumes were smaller in sealant and seton groups than in controls (median, 88 vs. 187 vs. 453 mm3, respectively; P = 0.002) and decreased over time (median, 408 and 152 mm3 (Day 42) vs. 88 and 75 (Day 53), respectively; P = 0.002). Fistula lumen (P < 0.001), and granulation tissue combined with fistula lumen volumes (P = 0.002) were similarly smaller. Magnetic resonance imaging of fistula intensity was less in the sealant group than in the seton group and controls (mean, 777 vs. 978 vs. 1214 units/mm2, P = 0.003). Magnetic resonance imaging fistula volumes were least in sealant and seton groups vs. controls (P = 0.024), decreasing significantly in the sealant group over time (P = 0.018). No direct relationship was found between imaging and histologic volumes. CONCLUSIONS: In an experimental porcine model of anal fistula, granulation tissue was still present, albeit diminished, following track curettage combined with seton or sealant therapy, and was minimal in the sealant group, confirming some benefit from this procedure. Eradication of all longstanding granulation tissue may ensure complete success of fibrin sealant therapy.

Experimental model of fistula-in-ano.

PURPOSE: This study was designed to create and evaluate an experimental porcine model of fistula-in-ano. METHODS: Initial cadaveric dissection enabled refinement of the technique for fistula formation and histoanatomical study of the porcine anal canal. Subsequently, three surgically created fistulas were treated by seton drainage in each of eight male pigs (weight, 38-41 kg). After 26 days, magnetic resonance imaging at 1.5 Tesla was performed and setons removed under general anesthesia, enabling clinical and microbiologic track assessment. Two pigs were killed for histologic fistula track assessment. RESULTS: Histoanatomical assessment noted a rudimentary internal anal sphincter, together with structures resembling anal glands. Artificial fistulas persisted during seton drainage and were more often associated with fecal than skin-derived organisms compared with both perineal and anal canal swabs (P = 0.002). All six fistulas assessed histologically had a lumen, and abundant surrounding granulation tissue similar to that seen in human fistula-in-ano. Epithelialization was not evident in any track. Fistulas were visualized as high signal tracks using magnetic resonance imaging. CONCLUSIONS: Porcine anal anatomy resembles that of humans, and an experimental model proved suitable when assessed by magnetic resonance imaging, microbiology, and histologically, which demonstrated abundant granulation tissue. This model could be further used to investigate fistula treatments.

Development of a pain and discomfort module for use with the WHOQOL-100.

Clinicians and researchers have become increasingly interested in the impact of chronic pain (CP) on quality of life (QoL). This report describes the qualitative stages of developing a pain and discomfort module for persons with CP to be used with the UK World Health Organisation generic measure of quality of life (WHOQOL). The aims were to investigate patients' perceptions of CP and its effect on QoL, and to generate items to be used in the development of a module appended to the UK WHOQOL-100. At the first stage (study 1), six focus groups of patients were invited to discuss how living with pain and discomfort affected QoL. At the second stage (study 2), an international web survey was conducted with English-speaking respondents. Ten new facets of QoL were identified by the focus groups: flare-ups, pain relief, anger and frustration, vulnerability/fear/worry, uncertainty, loss/loneliness/feeling alone, positive strategies, communication, guilt and burdening others, and relationship with health care providers. The web-survey confirmed and validated these new facets. Although the WHOQOL-100 is a reliable and valid measure of QoL for use in CP, this study shows that additional areas must be assessed when measuring the impact of CP on QoL.