'Everyone assumes a man to be quite strong': Men, masculinity and rheumatoid arthritis: A case-study approach.

Current literature has overlooked the impact of chronic illness on masculine identity. We therefore aimed to investigate the impact of rheumatoid arthritis (a long term condition, affecting more women than men) on masculine identity. Six focus groups with 22 men with rheumatoid arthritis (RA) (data reported elsewhere) followed by five one-to-one interviews with men (English, mean age: 59 years) sampled to reflect a heterogeneous experience of life with RA based on knowledge gained from the focus groups. Transcripts were analysed using thematic analysis and are presented as individual case studies. Whilst the case studies provide five distinct experiences, common themes can be drawn across them, such as the importance of paid work. The men needed to renegotiate their masculine identity to deal with their RA. Two dealt with this by pushing through pain to retain masculine activities, two replaced masculine roles they could no longer do with other roles, and one rejected masculinity completely. Men with long term conditions may need to re-write their masculinity scripts to enable them to accept and adapt to their condition. However, some men struggle with this, which should be taken into consideration when designing self-management services for men with long term conditions.

Bittersweet: a qualitative exploration of mothers' experiences of raising a single surviving twin.

Loss of a child from a multiple birth pregnancy is not uncommon yet the idiographic experience of parents who have lost a single twin from a multiple birth pregnancy is underexplored. This novel study sought to explore the experiences of mothers bereaved after loss of a twin from a multiple birth pregnancy, focusing on the dual challenges of parenting and grieving. Eighteen mothers at least 12 months post loss were recruited from a private UK based Facebook page dedicated to supporting parents after loss from a multiple birth. Eligible mothers completed an independent qualitative open-ended survey to explore maternal experiences of loss. Data were analysed using Thematic Analysis. Findings represented a sense of duality for participants, with mothers experiencing conflict between roles and identities as well as the nature of their loss. Key themes identified include 'Narrating a story of family and loss', 'Finding a place for the twins within the family' and 'A changing sense of self'. Findings fit with theoretical conceptualisations of bereavement that acknowledge retaining relationships with the deceased. Practically, suggestions for supporting mothers to identify stock answers to often asked questions about family make up were suggested.

Emergency Department Staff Attitudes Toward People Presenting in Chronic Pain: A Qualitative Study.

OBJECTIVE: Patients who experience their nonmalignant chronic pain as intolerable sometimes present at Emergency Departments (EDs). However, as emergency medical services are set up to provide rapid treatment for acute injury or illness; there is potential for misunderstanding and disappointment. Literature on the topic of ED staff attitudes toward chronic pain patients is minimal, USA-based and methodologically unsatisfying. We carried out an in-depth, qualitative study identifying the attitudes and narratives of ED staff around people in chronic pain. DESIGN: Focus groups with ED staff; qualitative analysis of the group transcripts. SETTING: Regional trauma centre in the UK. SUBJECTS: Three focus groups, 20 ED clinicians, mean ED experience 8.1 years. RESULTS: The clinical challenge of treating patients in the ED stemmed from a mismatch between patients' needs and what the setting can deliver. Participants reported frustration with the system and with chronic pain patients' perceived inconsistencies and requirements. However, they also highlighted good practice and acknowledged their frustration around not being able to help this group. CONCLUSIONS: ED staff found people presenting at ED with chronic pain to be a challenging and frustrating population to treat. Staff was constrained by the fast-paced nature of their jobs as well as the need to prioritise emergency cases, and so were unable to spend the time needed by chronic pain patients. This was seen as being bad for staff, and for the patient experience. Staff suggested that care could be improved by appropriate information, signposting and with time invested in communication with the patient.

Understanding weight gain in female prisoners.

PURPOSE: The purpose of the study is to investigate female prisoners' perspectives on why they gain weight while in prison. DESIGN/METHODOLOGY/APPROACH: A qualitative design was used with semi-structured interviews with six females currently residing in a prison in the south of England. FINDINGS: Analysis of the data generated three themes relating to the reasons why women gain weight in prison. These were labelled as "The only thing you haven't got to ask permission for is your food, it's just handed to you", "If you've been stripped of the things that make you happy, or that you are addicted to, eating can soothe you" and "prison can make you take better care of your health". ORIGINALITY/VALUE: The results identify perceived reasons why women gain weight in prison uniquely from the female prisoner perspective. The implications of the research identify the need for systemic change throughout different prison departments to enable women to maintain a healthy weight during their custodial sentence.

"I think most people feel like healthcare professionals tell them to take their treatments and judge them for not taking them": reflexive thematic analysis of the views of adults with cystic fibrosis on how treatment adherence is discussed in healthcare.

OBJECTIVE: Previous research exploring patient-practitioner communication in relation to adherence in cystic fibrosis (CF) is limited. This UK study explored the views of adults with CF on how treatment adherence (related to all CF treatments) is discussed in routine CF care. METHODS: 12 White British adults (ten females; aged 20-37 years; mean 30.1 years) with CF participated in semi-structured interviews. RESULTS: Three overarching themes were developed through reflexive thematic analysis: (1) 'The power of language'; (2) 'Healthcare professionals do not recognise the importance of context'; and (3) '"Admitting" non-adherence is difficult'. The way in which adherence is discussed in adult CF care is viewed as paternalistic and infantilising. Participants reported that healthcare professionals do not always consider the desire to balance treatment-taking with living a normal life. Unwelcome responses from healthcare professionals, and the inability to accurately self-report the amount of treatment taken made it difficult to 'admit' non-adherence. CONCLUSIONS: A culture change is needed in CF care such that people who struggle to take their treatments are not labelled as disobedient, wilfully disobeying orders from healthcare professionals in positions of authority. Instead, an open, honest, non-judgemental approach, as recommended by healthcare agencies for over a decade, should be adopted.

Supporting and sustaining care at home: Experiences of adult daughters who support a parent with dementia to remain in their own home.

Supporting a parent with dementia living in their own home is a challenging care issue which has potential for negative physical, emotional and psychosocial impacts. This research explores the experiences of adult daughters who sustain this arrangement as well as managing the competing demands of their lives. Using a qualitative approach, semistructured interviews were conducted between March and October 2017. Eight adult females in the United Kingdom who were supporting a parent with dementia to remain living in their home were interviewed. Photo-elicitation was used as an aid to data collection and complemented the use of Thematic Analysis (TA) to analyse verbatim transcripts. Four themes were identified: (a) Impact on identity: impact of the participants' experience on their sense of identity; (b) Continuity and change: relationship redefinition and duality of roles; (c) Stepping up to the challenge: adjustment to and coping with competing demands and ethical dilemmas; and (d) Finding help: 'It is just a minefield': experiences of help-seeking and service provision. This study highlights the experiences and challenges for adult daughters who support a parent with dementia. Ethical dilemmas regarding autonomy and safeguarding concerns figure large along with the competing demands of multiple roles. Service providers should aim to be more proactive in offering timely practical and psychosocial support and guidance to avoid compassion fatigue and acknowledge the valuable unpaid service provided by these 'women in the middle'.

How do peer support interventions for the self-management of chronic pain, support basic psychological needs? A systematic review and framework synthesis using self-determination theory.

OBJECTIVE: To identify how peer support interventions, for self-management of chronic pain, support basic psychological needs from a self-determination theory (SDT) perspective, using a systematic review. METHODS: Ten databases were searched for studies reporting qualitative research about peer interactions in pain management interventions. 'Best fit' framework synthesis methodology was applied to identify strategies that support the satisfaction of competence, autonomy and motivation. These were matched to definitions of strategies provided by standardised taxonomies. RESULTS: 18 studies were selected for inclusion. The synthesis resulted in a conceptual model, identifying 12 peer strategies that support psychological needs for self-management of chronic pain; 10 overlapped with existing taxonomies. CONCLUSION: This was the first known attempt to synthesise evidence about peer support strategies for people living with pain, using SDT as an a priori framework. The model demonstrates commonality between the motivation-promoting processes of peer support and those of other behaviour change interventions and identifies additional unique strategies provided by peers. This systematic classification of peer support strategies provides a means for future study of the efficacy and comprehensiveness of peer interventions. PRACTICE IMPLICATIONS: The model could assist healthcare professionals and support groups to optimise the potential of peer processes.

Junior doctors' experiences of personal illness: a qualitative study.

OBJECTIVES: Professional status and working arrangements can inhibit doctors from acknowledging and seeking care for their own ill health. Research identifies that a culture of immunity to illness within the medical profession takes root during training. What happens when trainee doctors become unwell during their formative period of education and training? What support do they receive and how do they perceive that the experience of ill health affects their training trajectory? These research questions were developed by a multidisciplinary team of researchers and health professionals, who adopted a qualitative approach to investigate the experiences of personal illness among trainees in their Foundation Programme (FP) years. METHODS: Semi-structured interviews were conducted with eight FP trainees from the Severn Deanery in southwest England who had experienced significant illness. Interpretative phenomenological analysis was used to conduct and analyse the interviews, resulting in a comprehensive list of master themes. This paper reports an interpretative analysis of the themes of Support, Illness Experience, Crossing the Line, Medical Culture, Stigma and Disclosure. RESULTS: Ineffective communication within the medical education and employment system underpins many of the difficulties encountered by trainees who are unwell. Coping style plays a key role in predicting how trainees experience support during and after their illness, although this may be influenced by their particular diagnoses. The barriers to disclosure of their illnesses are discussed within the context of mobilising and maintaining support. Concern about the impact of missing training as a result of ill health appears to be significant in the transmitting of an ethos of invulnerability within the medical culture. CONCLUSIONS: Suggestions to improve support procedures for trainees who are unwell include the provision of greater flexibility within the rotation system along with independent pastoral support. Promoting the importance of disclosing significant illness as early as possible might go some way towards challenging the culture of invulnerability to illness that prevails among doctors.

The pain self-management paradox: why do we focus on the individual when life context plays such a major role?

Although there has been a drive toward pain self-management, self-management has not yet in my opinion been successfully defined or evaluated and neither has it been consistently translated from idea to practice. In this perspective article, I identify gaps in our approach to pain management and argue that even though we know life context plays a huge role in influencing our health, by and large we fail to take this into account. I argue for a shift in focus away from the 'self' and explore how we might be able to do this within the constraints of our tired and over-stretched health system.

Understanding the psychological and social influences on office workers taking breaks; a thematic analysis.

Objective: There is a growing trend whereby office workers refrain from taking breaks at work. Previous research has not explored how employees understand the enablers and barriers to taking breaks. This study explored how office-based workers describe their behaviour in relation to, and perceive the notion of, taking breaks.Design: Five focus groups were held with 27 employees of differing levels of seniority at a local authority in the UK. Inductive thematic analysis was employed with the researchers maintaining a deliberate stance of curiosity towards the data, allowing for reflexivity and awareness of preconceptions towards the research.Results: The analysis identified 5 key themes: the non-binary nature of taking breaks at work, the influence of social and work relationships, the superordination of work over breaks and health, contradictory feelings of guilt and anxiety and being 'fair game' for work related matters if you remain at your desk at break times.Conclusion: This paper suggests that the complex relationships that people have with taking breaks, with others and with their physical environment should be taken into account when trying to understand break-taking behaviour. Based on these findings, suggestions for further research and potential health-related policy and organisational changes are made.

How adolescents who cut themselves differ from those who take overdoses.

The aims of this study were to identify in what ways adolescents who cut themselves differ from those who take overdoses, and to investigate the role of contagion in these behaviours. Data from an anonymous self-report questionnaire survey of 6,020 adolescents in 41 schools were analysed. Comparison of 220 adolescents who reported self-cutting in the previous year with 86 who had taken overdoses in the previous year as the sole method of deliberate self-harm (DSH) showed that far more of those who cut themselves had friends who had also engaged in DSH in the same period (OR 2.84, 95% CI 1.5-5.3, P < 0.001), and fewer had sought help from friends before cutting (OR 0.5, 95% CI 0.3-0.9, P < 0.02). Self-cutting usually involved less premeditation. Analyses at both the individual and school level showed that the association between engaging in DSH and exposure to DSH amongst peers was largely confined to girls who cut themselves. There are important differences between adolescents who cut themselves and those who take overdoses. Contagion may be an important factor in DSH by adolescents, especially in girls who cut themselves. These findings are relevant to the design of prevention and treatment programmes.

Understanding suicidal ideation and behaviour in individuals with chronic pain: a review of the role of novel transdiagnostic psychological factors.

Individuals with chronic pain are at an elevated risk of suicide, yet psychosocial factors that might be involved in increasing or decreasing vulnerability for suicidal ideation and behaviour have received little attention. Extant literature on the topic of suicide in individuals with chronic pain incorporates only a few of the wide array of known vulnerability and protective factors. This Review focuses on transdiagnostic psychological processes, (ie, those of relevance for both chronic pain and suicide). We reviewed a selection of published literature on chronic pain and suicide, concentrating on previously unexplored and underexplored lines of research, including future orientation, mental imagery, and psychological flexibility. A greater degree of crosspollination between the fields of chronic pain and suicide research is required to progress our understanding of why some people with chronic pain become suicidal and others do not.

"Living in a foreign country": experiences of staff-patient communication in inpatient stroke settings for people with post-stroke aphasia and those supporting them.

Purpose: Staff-patient communication in in-patient stroke settings is viewed as challenging for stroke survivors with aphasia and those supporting them. This study sought to explore these experiences from the perspectives of stroke survivors, their carers and healthcare professionals.Methods: A qualitative study where stroke survivors with aphasia, carers and healthcare professionals were interviewed (audio-recorded) one-to-one or via focus group. Stroke survivors were at least 6 months post-stroke and had a self-reported mild to moderate level of post-stroke aphasia. Transcripts for each group were analysed separately using inductive thematic analysis; followed by an integrative analysis.Results: Six stroke survivors with aphasia, 10 carers, and six healthcare professionals were recruited. Three overarching themes were identified: "being in a foreign country", "finding a voice", and "you're just a number". A dynamic model of communication is proposed offering a framework for understanding the relationships between "the context", "the people" and "the interactions".Conclusions: Communication was viewed as important but challenging by all three groups. To maximise staff-patient interactions in the future, attention needs to be paid to: the psychosocial needs of stroke survivors and their carers, ongoing staff training and support for the healthcare professionals supporting them, and the provision of an aphasia-friendly and a communicatively stimulating ward environment.Implications for RehabilitationEffective staff-patient communication is viewed as fundamental to stroke rehabilitation but challenging by patients with aphasia, their carers and the healthcare professionals supporting them.To maximise staff-patient communication three key areas must be considered and targeted: those involved/affected by staff-patient communication ("the people"), factors within the "hospital context", and "the interactions" between "the people".Tailoring and being consistent with communication and care is paramount to avoid repeated negative communication encounters which can result in disengagement from care.Stroke rehabilitation which currently focuses on the physical fails to address the psychological/emotional and social needs of the patients and those supporting them.

Somatosensory conflicts in complex regional pain syndrome type 1 and fibromyalgia syndrome.

The somatosensory system is an integral component of the motor control system that facilitates the recognition of location and experience of peripheral stimuli, as well as body part position and differentiation. In chronic pain, this system may be disrupted by alterations in peripheral and cortical processing. Clinical symptoms that accompany such changes can be difficult for patients to describe and health care practitioners to comprehend. Patients with chronic pain conditions such as complex regional pain syndrome or fibromyalgia typically describe a diverse range of somatosensory changes. This article describes how sensory information processing can become disturbed in fibromyalgia syndrome and complex regional pain syndrome and how symptoms can potentially be explained by the mechanisms that generate them.

Experiencing "the other side": a study of empathy and empowerment in general practitioners who have been patients.

Work-related pressures and susceptibility to health problems mean that many general practitioners (GPs) will, at some stage, experience the role of patient. However qualitative evidence about their experiences of illness and patienthood is sparse. Our study offers an interpretative perspective on GPs' experiences of illness and the influence that this has had on their practice. Seventeen GPs who had experienced significant illness took part in semistructured interviews. Data were analyzed using interpretative phenomenological analysis (IPA). The findings highlight the relationship between empathy and empowerment and explore the role of self-disclosure of GP status by GPs in consultations. We make suggestions as to how empathy in doctor-patient relationships can be developed through consideration of power and status as well as through interaction with patients from similar backgrounds. Future research should focus on more specific ways to integrate these ideas into medical training.

The presentation of "pro-anorexia" in online group interactions.

Although pro-anorexia online support forums and the narratives that occur within them are increasingly the focus of research, none, to date, focuses closely on issues of identity within this online context. Our aim in conducting this study was to examine the presentation of pro-anorexia via an interpretive phenomenological analysis of postings to a pro-anorexia ("pro-ana") online discussion forum. Analysis indicates that pro-anorexic identities are normalized and strengthened through the normalization of participants' pro-ana thoughts and behaviors, and the group bond created through sharing a secret identity. This process renders participants less likely to reveal their pro-ana identity to friends and family in the real world. The implications of our findings are discussed in relation to the theory of identity demarginalization.

Parenting young people with complex regional pain syndrome: an analysis of the process of parental online communication.

INTRODUCTION: Parenting a young person with complex regional pain syndrome (CRPS) is associated with high levels of parental distress and numerous emotional, informational, and practical challenges. To meet these challenges, parents seek others undergoing similar experiences, both in face to face and online forums. OBJECTIVES: The objective of this study was to conduct a qualitative analysis of online forum data to explore the process of parental forum communication regarding parenting a young person with CRPS in online spaces. METHODS: A total of 107 forum posts relating to parenting a young person with CRPS were collected from 39 users across 2 public forums. Data were analyzed using thematic analysis. RESULTS: Findings identified 2 themes: "the informal rules of exchanging and receiving network support" and "parents positioning themselves as experts." The first theme highlighted the varied nature of support sought and provided by parents in addition to social rules associated with the negotiation of this support. The second theme represented an understanding of how parents presented themselves as experts in their young person's pain, both in relation to fellow parents and health care professionals. CONCLUSION: This study provided a novel insight into support and communicational exchanges between parents of young people with CRPS on online public forums. Findings identified the perceived usefulness of online spaces in terms of parents of young people with CRPS seeking and providing support. Further research can helpfully investigate how we might implement online peer mentoring to improve support further for parents.

Coping Strategies, Psychological Impact, and Support Preferences of Men With Rheumatoid Arthritis: A Multicenter Survey.

OBJECTIVE: To investigate the existence and distribution of 2 typologies (termed "factors") of men with rheumatoid arthritis (RA) identified through our previous Q-methodology study (n = 30) in a larger sample of men with RA, and whether differences in psychosocial impact or support preferences exist between the 2 factors, and between men and women with RA. METHODS: A postal survey was sent to 620 men with RA from 6 rheumatology units across England, and the support preferences section of the survey was given to 232 women with RA. RESULTS: A total of 295 male patients (47.6%) and 103 female patients (44.4%) responded; 15 male participants had missing data, and thus 280 were included in the analysis. Of these, 61 (22%) were assigned to factor A ("accept and adapt"), 120 (35%) were assigned to factor B ("struggling to match up"), and 99 (35%) were unassigned. The two factors differed significantly, with factor B reporting more severe disease, less effective coping strategies, and poorer psychological status. For support, men favored a question and answer session with a consultant (54%) or specialist nurse (50%), a website for information (69%), a talk by researchers (54%), or a symptom management session (54%). Overall, women reported more interest in support sessions than men, with ≥50% of women reporting interest in nearly every option provided. CONCLUSION: Some men accept and adapt to their RA, but others (43%) report severe disease, less effective coping, and poor psychological status. Men's preferences for support are practical, with a focus on expanding their knowledge.

I hear, I listen and I care: a qualitative investigation into the function of a self-harm message board.

This paper reports on the findings of a qualitative inquiry into the interactions on a nonprofessional self-harm message board. Individuals using the message board were very positive about the message board and appeared to feel that their needs for support, venting, and validation were being met. However, we found that negative harmful behaviors mentioned in messages posted on the board were either not acknowledged, or were legitimized and normalized by those who responded to the messages. We suggest that this process of minimizing the seriousness and/or normalizing the behaviors may actually be encouraging the maintenance of such behaviors and therefore conclude that caution should be exercised when using nonprofessional self-harm message boards.

Exploring the Therapeutic Affordances of Self-Harm Online Support Communities: An Online Survey of Members.

BACKGROUND: A growing number of online communities have been established to support those who self-harm. However, little is known about the therapeutic affordances arising from engagement with these communities and resulting outcomes. OBJECTIVE: The aim of this study was to explore the presence of therapeutic affordances as reported by members of self-harm online support communities. METHODS: In total, 94 respondents (aged 13-63 years, mean=23.5 years; 94% female) completed an online survey exploring their experiences of engaging with a self-harm online support community. Respondents varied in terms of how long they had been accessing an online community, with 22% (21/94) accessing less than 1 year, 39% (37/94) 1 to 2 years, 14% (13/94) 2 to 3 years, and 24.5% (23/94) more than 3 years. Responses were analyzed using deductive thematic analysis. RESULTS: The results of our analysis describe each of the five therapeutic affordances that were present in the data, namely (1) connection, the ability to make contact with others who self-harm for the purposes of mutual support and in so doing reduce feelings of loneliness and isolation; (2) adaptation, that is, how use of online support varies in relation to the personal circumstances of the individual user; (3) exploration, that is, the ability to learn about self-harm and learn about strategies to reduce or stop self-harming behavior; (4) narration, that is, the ability to share experiences, as well as read about the experiences of others; and (5) self-presentation, that is, how and what users present about themselves to others in the online community. CONCLUSIONS: Our findings suggest that engagement with self-harm online support communities may confer a range of therapeutic benefits for some users, which may serve to minimize the psychosocial burden of self-harm and promote positive coping strategies. In addition, the online nature of the support available may be helpful to those who are unable to access face-to-face support.