Negotiating the boundaries of the medical model: Experiences of people with epilepsy.

People with epilepsy (PWE) continually report dissatisfaction with the support they receive, particularly in regard to their psychological wellbeing. With its focus on optimal seizure control, epilepsy treatment is entrenched in the medical model of illness, despite growing evidence of the broader psychosocial impact of the condition. This study aimed to explore how PWE experience healthcare in the context of their lives. Semistructured interviews were conducted with thirty-nine adults with epilepsy from across the UK. An adapted version of interpretative phenomenological analysis (IPA) was conducted, and three superordinate themes were identified. Firstly, "negotiating the space between health and illness" identified how participants rejected the illness identity and struggled with a treatment regime, which reminded them of the longevity of their condition. Secondly, "tensions in adopting a biomedical perspective" considered how medical professionals overlooked the negative side effects medication had on participants' lives, in favor of optimal seizure control. Thirdly, "the need for broader support" highlighted the additional psychosocial support PWE require. The findings indicate the need to incorporate person-centered, psychological services within the care pathway for PWE, as well as training for health professionals to recognize the broader impact of epilepsy beyond seizure management.

Epilepsy, identity, and the experience of the body.

Living with a chronic condition can challenge a person's identity, yet there is a paucity of research exploring this experience for people with epilepsy and particularly for those diagnosed in adulthood. Consequently, through an interpretative phenomenological approach, the current study aimed to explore what the experience of adult-onset epilepsy meant for a person's identity. Thirty-nine people with adult-onset epilepsy from across the UK took part in up to two semi-structured interviews. A modified form of interpretative phenomenological analysis was conducted and identified three themes: 1) disarming the impact of seizures considered strategies used to control seizure occurrence and regain a sense of control over the body; 2) distinguishing the self from the body highlighted participants' attempts to separate their sense of self from the unpredictability of their bodies; 3) separating epilepsy from themselves demonstrated how participants externalized epilepsy from themselves in order to reject it as part of their identity. The findings highlighted that living with adult-onset epilepsy can challenge a person's sense of self and trust in their body, resulting in the adoption of various strategies to manage the threat to their identity. As such, practitioners must pay attention to the impact that adult-onset epilepsy can have on a person's identity and faith in their body.

The experience of living with adult-onset epilepsy.

The incidence and prevalence of adults diagnosed with epilepsy is higher compared to those diagnosed in childhood, yet the experience of living with adult-onset epilepsy has rarely been examined. Hence, the current study took a phenomenological approach to examining the experience of living with epilepsy following diagnosis in adulthood. Semi-structured interviews were conducted with 39 people from across the UK, diagnosed with epilepsy between the ages of eighteen and sixty, at two points in time, six months apart. Phenomenological analysis identified three central themes: the unpredictability of seizure occurrence; the ripple effect; and re-evaluating the future. Despite the accepted consensus in the epilepsy literature that living and coping with epilepsy becomes more difficult the older a person is diagnosed, the current findings indicated that this is inadequate. Rather, it is more suitable to consider that those living with adult-onset epilepsy have a specific experience of the condition and particular support needs, given that they once lived their lives as people without epilepsy.

Psychological skills training of an elite wheelchair water-skiing athlete: a single-case study.

This study presents a complete psychological skills training (PST) program with a wheelchair athlete and examines the program effectiveness using a mixed-method approach. After initial testing, the athlete followed a two-month program of self-confidence building, motivational, visualization/relaxation, and injury management techniques. Quantitative and qualitative methods were used to examine the impacts on performance and psychological abilities. The triangulated results suggest that the PST program was perceived as effective by the athlete in terms of his sporting performances and mental skills. The characteristics and implications of a PST program with this wheelchair athlete are discussed, as well as the study limitations and the perspectives for future research.

A qualitative study with orthopaedic surgeons on pain catastrophizing and surgical outcomes: shifting from a medical towards a biopsychosocial model of surgery.

BACKGROUND: Pain catastrophizing (PC) moderates surgical outcomes and behavioural interventions are recommended to optimise post-operative results. Less is known about surgeons' experiences of providing care and their attitudes towards the use of interventions in practice. OBJECTIVE: It is therefore invaluable to understand surgeons' views on how best to support patients who may be at risk of suboptimal recovery. Eleven surgeons and three registrar orthopaedic practitioners took part in semi-structured interviews within a hospital setting. The surgical decision-making process, views of PC and the use of behavioural interventions in surgical practice were explored. RESULTS: Thematic analysis identified five themes: pain expressions and pain behaviours affect the surgeons' decision-making process, when pathologies and symptoms do not match, psychological factors pertaining to unsatisfactory outcomes, a service gap in surgical care and the acceptability of using a screening tool in surgical practice to identify patients at risk of suboptimal recovery. CONCLUSION: Orthopaedic surgeons face challenges in identifying who is likely to reach optimal versus suboptimal outcome. Surgeons are becoming increasingly aware of patient psychological distress being detrimental to outcomes, and they support the use of behavioural interventions to optimise post-operative outcomes or stop unnecessary treatments. The surgeons accept the use of a screening tool in surgical practice with better access to support services with input from allied health professionals. A screening tool may provide great utility for identifying at risk patients, to allow for modification of surgical patients care plans.

A qualitative study to understand patients' experiences of their post-operative outcomes following forefoot surgery.

Background: Hallux valgus and hallux rigidus are two common forefoot conditions causing deformity, pain, functional limitations, disability and deteriorating health status resulting in the requirement for surgery. Even when surgery is performed by an experienced surgeon, there remains a potential for patients to experience dissatisfaction and unfavourable outcomes. Adverse results are moderated by psychosocial variables; however, there is a paucity of qualitative research providing insight into how patients perceive their outcomes and the factors affecting their recovery. Objective: The study aimed to qualitatively explore patients' experiences of their surgical outcomes following forefoot surgery and factors associated with their recovery. Semi-structured interviews with 15 patients who received surgery for hallux valgus and/or hallux rigidus were conducted. Results: Thematic analysis generated five themes: physical limitations, the psychosocial impact of surgical recovery, regaining normality, patients' expectations for physical recovery and an altered body-image. Physical and psychosocial factors were inter-related. Patients experiencing problematic outcomes were functionally limited, had low mood and were unable to return to a normal life post-surgery. The women reported weight related issues and were limited in their footwear and clothing choices, negatively impacting on their self-esteem. Conclusion: A forefoot condition is multifaceted, with patients experiencing a range of physical and psychological factors that may influence their outcomes and recovery from surgery. Patients need to be supported holistically with the use of a biopsychosocial model. A multidisciplinary approach to care and treatment within the forefoot surgical pathway with the inclusion of allied health professionals will enable to better support patients to enhance their outcomes.

Binge-drinking in Britain as a social and cultural phenomenon: the development of a grounded theoretical model.

Techniques and procedures of Strauss and Corbin's grounded theory were used to develop a conditional matrix on binge-drinking in Britain, reflecting data of 32 participants, aged between 22 and 58. The core category was 'binge-drinking as a social and cultural phenomenon'. Results show the value of binge-drinking as an enjoyable way of socializing and counter-balancing the demands of daily hassles and routines. Intervening and contextual factors indicate fluctuations in binge-drinking behaviour and the social and cultural constraints that may operate, such as 'no drink-driving', 'not when the next day is a work day' and 'not on one's own'.

Attitudes towards the male contraceptive pill in men and women in casual and stable sexual relationships.

BACKGROUND AND METHODOLOGY: Men's and women's attitudes towards the male contraceptive pill and their trust in the effective use of the male pill were investigated, as well as the associated variables of reported health behaviours, perceived self-efficacy and type of sexual relationship, using a questionnaire survey. RESULTS: Although both sexes had a favourable attitude towards the male pill, females had a more positive attitude than men. Conversely, women had less trust that men would use the male pill effectively. Males in stable sexual relationships were more positive about the male pill than those in casual sexual relationships. Gender, relationship type and trust in the effective use of the male pill reliably predicted attitude towards the male pill. High perceived self-efficacy was related to engaging in more health behaviours, and in men a positive association between health behaviours and attitude towards the male pill has been found. DISCUSSION AND CONCLUSIONS: A positive attitude towards the male pill does not automatically imply that the individual is confident about its effective use. Once the male pill is widely available, promotional campaigns could target not only men but also their female partners, as the latter tend to come into contact with health services more frequently. In order to increase confidence in effective implementation, a variety of presentations of the male pill should be made available in line with individual needs and lifestyles.

What are the positive drivers and potential barriers to implementation of hospital at home selected by low-risk DECAF score in the UK: a qualitative study embedded within a randomised controlled trial.

OBJECTIVE: Hospital at home (HAH) for chronic obstructive pulmonary disease exacerbation selected by low-risk Dyspnoea, Eosinopenia, Consolidation, Acidaemia and atrial Fibrillation (DECAF) score is clinical and cost-effective; DECAF is a prognostic score indicating risk of mortality. Up to 50% of admitted patients are suitable, a much larger proportion than earlier services. Introduction of new models of care is challenging, but may be facilitated by informed engagement with stakeholders. This qualitative study sought to identify facilitators and barriers to implementation of HAH. DESIGN: Semistructured interviews, data were analysed using thematic-construct analysis. SETTING: Interviews were conducted within patients' homes and hospitals in North East England. PARTICIPANTS: 89 participants were interviewees; 44 patients, 15 carers, 15 physicians, 11 specialist nurses and 4 managers. RESULTS: Facilitators include the following: (1) availability of home comforts and maintaining independence (with positive influences on perceived rate of recovery, sleep quality and convenience for friends, family and carers) and (2) confidence in the continuity of HAH care. Barriers include the following: (1) fear of being alone at home; (2) privacy issues and not wanting visitors and (3) resistance to change. Clinician concerns occasionally delayed return home, principally during the early phase of the trial. Nurses cited higher workload and greater responsibility, but with additional resource and training; overall, they viewed HAH positively. Operational concerns included keeping medical records in a patient's home and inability to capture activity within current payment systems. CONCLUSION: HAH selected by DECAF was preferred to inpatient care by most patients and their families. Implementation in other hospitals will require education, training and service planning, tailored to overcome the identified barriers. TRIAL REGISTRATION NUMBER: ISRCTN29082260.

A randomised crossover trial comparing Thai and Swedish massage for fatigue and depleted energy.

BACKGROUND: The aim of this study was to compare the efficacy and social constructions of Thai massage (TM) and Swedish massage (SM) for patients experiencing fatigue or depleted energy. METHOD: Twenty participants were randomised to receive three once-weekly TM treatments and three once-weekly SM treatments, with crossover after three massages. Symptom checklists were administered at three time points and included Activation-Deactivation Adjective Check List and VAS Scale. Qualitative data were collected through semi-structured interviews and participants' diary entries. RESULTS: Both massage types enhanced physical, emotional and mental wellbeing through improved sleep, relaxation, relief of stress and relief of muscular tension. TM alone showed specific energising and psychological stimulation results, along with carry-over effect and longer lasting benefits. Ninety-five percent of participants found relief from their initial reason presenting symptoms. CONCLUSION: TM or SM can relieve symptoms of fatigue or low energy by releasing stress, promoting relaxation, relieving muscular aches and pains and improving energy. SM results in a larger effect in relaxation and improved sleep whereas TM results in a larger effect in energising, rejuvenating and mentally stimulating effects.

Stigma, sexually transmitted infections and attendance at the GUM Clinic: an exploratory study with implications for the theory of planned behaviour.

A gap in the literature regarding understanding of people's health care seeking behaviours in relation to sexually transmitted infections is identified. Employing both deductive and inductive methods, 10 patients (five female, five male) were interviewed to explore the psychosocial, motivational and attitudinal factors associated with attendance at a Genito-Urinary Medicine (GUM) clinic in a close-knit community in the north of England. Seven stigma-related themes were identified as salient issues surrounding perceptions of sexual health screening and included: (1)prejudice surrounding STIs; (2)fear of exposure; (3)isolation; (4)reluctance to attend; (5)contamination; (6)relationship issues; and (7)perceived invulnerability. Within these themes distinct gender differences were identified. Implications for the theory of planned behaviour (TPB) are discussed against the factors identified.

Factors important in the design of information material for scoliosis.

The aim of this study was to identify the most salient characteristics for designing written information for persons with idiopathic scoliosis and their families. A sample of 106 persons with idiopathic scoliosis (n=83) and family members of persons with idiopathic scoliosis (n=23) completed a postal questionnaire to assess perceived level of scoliosis-related knowledge, importance attached to generic design characteristics of information material and preferences for presentation of risk information. Scoliosis knowledge was rated below average for 70% of topics. The most important generic design characteristics were associated primarily with treatment for scoliosis. A majority desired information on benefits/risks of treatment in both absolute and relative terms, and both loss and gain information. Relative frequencies, percentages without decimals, bar graphs, pie charts and Paling Palette were rated as clearest for the presentation of risk information. Respondents lacked knowledge about their condition, which warrants an assessment of current information needs before, during and after treatment, and generic preferences for information and its presentation were identified. Ideally, information material should cover all treatment options including outcome probabilities using frequencies per 100 people and without decimals. Practitioners are best placed to refer persons with idiopathic scoliosis to 'approved' sources of information on the Internet or self-help groups.

Evaluating the factor structure of the Psychological Performance Inventory.

This study assesses the construct validity of a measure of mental toughness, Loehr's Psychological Performance Inventory. Performers (N = 408, 303 men, 105 women, M age = 24.0 yr., SD = 6.7) drawn from eight sports (artistic rollerskating, basketball, canoeing, golf, rugby league, rugby union, soccer, swimming), and competing at either international, national, county and provincial, or club and regional standards. They completed the 42-item Psychological Performance Inventory during training camps. Principal components analysis provided minimal support for the factor structure. Instead, the exploratory analysis yielded a 4-factor 14-item model (PPI-A). A single factor underlying mental toughness (G(MT)) was identified with higher-order exploratory factor analysis using the Schmid-Leiman procedure. Psychometric analysis of the model, using confirmatory analysis techniques, fitted the data well. Collectively satisfying absolute and incremental fit index benchmarks, the inventory possesses satisfactory psychometric properties, with adequate reliability and convergent and discriminant validity. The results lend preliminary support to the factorial validity and reliability of the model; however, further investigation of its stability is required before recommending practitioners use changes in scores as an index for evaluating effects of training in psychological skills.

The decision-making process for breast reconstruction after cancer surgery: Representations of heterosexual couples in long-standing relationships.

OBJECTIVES: Most people deal with intrusive life events such as cancer and the care trajectory together with their intimate partners. To our knowledge, no research has studied the involvement of the partner in the decision-making process regarding breast reconstruction (BR) after cancer. This study aimed to gain a better understanding of the couples' decision-making process for BR in the cancer context and particularly to investigate the partners' involvement in this process. METHOD: Eighteen participants (nine women who underwent a mastectomy following a first breast cancer and their intimate partners) took part in this study. We conducted semidirective interviews, and a general inductive approach was chosen to capture the representations of the couples. RESULTS: The women in the sample were aged between 33 and 66 years (M = 54, SD = 7.5) and their partner between 40 and 76 years (M = 59, SD = 11.6). The duration of their intimate relationship was on average 18 years (SD = 10.4; minimum = 4; maximum = 33). The analysis revealed 11 major themes. The two most salient ones were 'external influence' and 'implication of the partner'. The exploration of the subthemes revealed that the decision-making process is often reported as an interrelated experience by the couples and as a dyadic stressor. The partner's role is depicted as consultative and mostly supportive. CONCLUSION: These results provide new insights on the involvement of the partner in decision-making. Thus, it now seems crucial to develop a prospective study, which will help understand the progression of the decision-making process over time. Statement of contribution What is already known on this subject? Most people deal with intrusive life events such as cancer and the care trajectory together with their intimate partners. Shared decision-making between patients and physicians is now the 'gold standard' in Western Europe and the United States. However, in the context of breast reconstruction (BR) after cancer, factors guiding the decision-making process for BR, especially the potential involvement of the partner, are not very well understood. What does this study add? Provides a qualitative insight on the specific nature of heterosexual couples' representations regarding the decision-making process for breast reconstruction after cancer. Reveals that the decision-making process is often reported as an interrelated experience by the couples and as a dyadic stressor. Underlines the consultative function of partners with women engaged in breast reconstruction.

Information, social support and anxiety before gastrointestinal endoscopy.

OBJECTIVES: To examine Lazarus and Folkman's (1984) stress theory regarding the effects of the stress mediators information and perceived social support on anxiety (as the stress response) regarding gastrointestinal (GI) endoscopy (as the stressor) in male and female patients of various age groups. DESIGN: Non-experimental design. METHODS: Structured interviews were conducted with 113 hospital out-patients about to undergo GI endoscopy. Participants indicated their perceptions of how much support and how much clear and useful information they had received from both their general practitioner (GP) and a patient information leaflet developed in collaboration with health psychologists as well as their perceptions of how much social support they had obtained from other patients, family and friends. Anxiety was measured with a population-specific trait and state adaptation of the Hospital anxiety and depression scale (HADS-A). RESULTS: Psychometric exploration of the HADS-A revealed a single general anxiety factor. The reliability of this factor was high, with Cronbach's alpha=0.91. The majority of the sample experienced high anxiety levels. Gender, but not age, differences emerged, showing females to be more anxious than males, F(1, 84)=5.68, p<.05. A regression model built on stress theory was tested, with anxiety as the dependent variable and 11 predictor variables. The model was significant with R(2)=0.452, F(11, 47)=3.522 and p=0.001. CONCLUSIONS: The clarity, but not the amount, of information and social support from important others, but not GPs, were both mediating the stress experience of the patients by reducing their perceived anxiety.

Social constructions of the male contraception pill: When are we going to break the vicious circle?

Social constructions of men towards the availability of a male hormonal contraceptive, the 'male pill', were explored. A qualitative approach applying semi-structured interviews and scenarios with 22 men (mean age 35 years) from the North East of England revealed two core constructs and six sub-constructs using a Thematic-Construct Analysis in line with the method of Toerien and Wilkinson and Clarke and Kitzinger. Verbal accounts were inductively used to balance the deductively created two core constructs 'Constructing the male pill norm: dominant system of sensemaking' and 'Living by the male pill norm' to represent a normative framework within a changing ideology of shared responsibility in contraceptive choice. Constructing the male pill norm was divided into two sub-constructs: 'Male pill: we are going to join the women and become responsible - too!' and 'Male pill: you look so girly - what are they going to think of me?' The 'Living by the male pill norm' was further divided into four sub-constructs 'Male pill - thank you for giving me promises not to have to become a dad as yet!'; 'Male pill: thank you for the idea of fun - sorry about my morals!'; 'Male pill: in stable relations - yes, I would have you now - sorry, I am too late!' and 'Male pill, we love you - but we are too anxious - we are not ready as yet!' From this male discourse, it is clear that discussions over the male pill follow the line of a vicious circle. In order to establish long-term side effects, Phase IV studies are necessary, and these cannot commence without the male hormonal contraception being a marketable product. So, unless this circle gets broken by some brave men, the male pill will remain a virtual rotating idea for a long time.

[Evaluation of the impact of breast reconstruction in women in couple through a community-based research tool: The Seintinelles]. / Évaluation de l'impact de la reconstruction mammaire chez les femmes en couple grâce à un outil de recherche communautaire : les Seintinelles.

This preliminary study explores the psychological and marital impact of breast reconstruction (or lack thereof) in women who had a mastectomy due to breast cancer. The study was carried out through an innovative and French community-based research tool on cancer: the Seintinelles. Sixty-nine partnered women treated for breast cancer participated, divided into 3 groups: 19 without breast reconstruction, 24 with immediate breast reconstruction and 26 with delayed breast reconstruction. They completed online questionnaires measuring both satisfaction and regret about the decision related to breast reconstruction, quality of life after breast surgery (EORTC-BRR), emotional state (POMS) and marital intimacy (PAIR). Recruitment through the Seintinelles had the advantage of being quick and national, but the profile of participants deviated from the mean population in the sense that our subjects were on average younger than women affected by breast cancer and had faced more breast cancer in their family. The results revealed that women are satisfied with their choice (little regret), have a similar emotional experience and good marital intimacy. However, women without breast reconstruction would less recommend their decision to others and were less satisfied with the aesthetic result, compared to women with breast reconstruction. These results highlight that psychological and marital impact seems comparable in women with and without reconstruction. Future studies are needed to better understand the role of the partner in the recourse of breast reconstruction.

Influence of illness script components and medical practice on medical decision making.

Illness scripts are knowledge structures composed of consequences, enabling conditions, and faults. The effects of illness script components--consequences and enabling conditions--and physician factors on referral decisions for gastrointestinal disorders were investigated. The hypothesis that consequences and enabling conditions increase the likelihood of referral was confirmed and several interactions between consequences and enabling conditions were found. The hypothesis that physician factors moderate the effect of enabling conditions was also confirmed, but (contrary to illness script theory) evidence was also found for moderation of consequences. Both enabling conditions and consequences were found to be moderated by physician factors to a larger extent than previously assumed by illness script theory.

Predictors of the psychosocial impact of being a carer of people living with Parkinson's disease: a systematic review.

INTRODUCTION: Caring for a person with Parkinson's disease (PwP) can have a variety of negative consequences that may challenge their ability to continue their caring role. It is still unknown why some individuals adapt better than others in response to such burdens. This review is the first to synthesize and evaluate the evidence on the predictive factors of psychosocial outcomes in PwP carers. METHODS: Studies which identified predictors of psychosocial outcomes for unpaid carers were included. PsychINFO, EMBASE, AMED, BNI and CINAHL databases were searched, supplemented by scanning of references lists of included studies and relevant journals from 2008 onwards. Quality was assessed using the NICE methodology checklist for prognostic studies. RESULTS: Twenty-nine studies were included in the review, providing a low-level of evidence. Carer burden was investigated in 18 studies and mental health and quality of life (QoL) in seven studies each. PwP non-motor symptoms and QoL and carer depression were consistently identified as predictors for at least one psychosocial outcome. Demographics and disease factors were consistently found not to be predictors. Carer involvement and protective factors (e.g. social support, personality) demonstrated promising findings but studies were too few or factors measured inconsistently. CONCLUSION: Confident conclusions could not be drawn regarding the most important predictors that should be targeted in psychosocial interventions due to methodological weaknesses and lack of theoretical testing across the current literature. Future research should build upon psychological theory to gain a better understanding of the mechanisms that explain how carers adapt to caregiving.

Presence within a mixed reality environment.

Mixed reality environments represent a new approach to creating technology-mediated experiences. However, there is a lack of empirical research investigating users' actual experience. The aim of the current exploratory, non-experimental study was to establish levels of and identify factors associated with presence, within the framework of Schubert et al.'s model of presence. Using questionnaire and interview methods, the experience of the final performance of the Desert Rain mixed reality environment was investigated. Levels of general and spatial presence were relatively high, but levels of involvement and realness were not. Overall, intrinsic motivation, confidence and intention to re-visit Desert Rain were high. However, age was negatively associated with both spatial presence and confidence to play. Furthermore, various problems in navigating the environment were identified. Results are discussed in terms of Schubert's model and other theoretical perspectives. Implications for system design are presented.