"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.

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.

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'.

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.

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.

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.

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.

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.

'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.

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.

"You Obviously Just Have to Put on a Brave Face": A Qualitative Study of the Experiences and Coping Styles of Men With Rheumatoid Arthritis.

OBJECTIVE: To explore the experiences, coping styles, and support preferences of male rheumatoid arthritis (RA) patients. METHODS: Six focus groups comprised 22 men with RA. Transcripts were analyzed using inductive thematic analysis. RESULTS: Three overarching themes describe the experiences, coping styles, and support preferences of men with RA. In "challenges to masculinity," the men described a "reduction in strength and abilities," which can lead to loss of independence, "challenges to masculine identity and role," and "loss of power and control." Coping by "getting through life with RA" meant dealing with RA by "just getting on with it," "information seeking," engaging in "destructive behaviors," and "withdrawing socially." Preferred "sources of support" tended not to include friends, as they were perceived to lack understanding or support. For acceptable support the men reported a preference for information-giving sessions rather than a discussion group, but there was no agreement on whether these should be mixed-sex or men only, or who should run the sessions. CONCLUSION: Male patients reported a range of coping styles and support preferences to address their experiences of living with RA, many of which may not be shared with women. Further research is needed to investigate whether these findings exist in a larger sample and whether the support preferences of men with RA are broadly different from those of women with RA to decide whether there is a clinical need to design a service for the potentially different needs of men.

Identifying different typologies of experiences and coping strategies in men with rheumatoid arthritis: a Q-methodology study.

OBJECTIVE: To identify typologies of experiences and coping strategies of men with rheumatoid arthritis (RA). DESIGN: Q-methodology (a qualitative and quantitative approach to grouping people according to their subjective opinion). Men with RA sorted 64 statements relating to their experience of living with RA according to level of agreement across a normal distribution grid. Data were examined using Q-factor analysis. SETTING: Rheumatology outpatient departments in the UK. PARTICIPANTS: 30 of 65 invited men with RA participated in this study (46%). RESULTS: All participants ranked highly the need to be well informed about their medication and the importance of keeping a positive attitude. 2 factors describing the experiences and coping strategies of male patients living with RA were identified: factor A: 'acknowledge, accept and adapt' (n=14) take a proactive approach to managing the impact of RA and find different ways of doing things; while factor B: 'trying to match up to a macho ideal' (n=8) are determined to continue with their pre-RA lives, and therefore push themselves to carry on even if this causes them pain. They are frustrated and angry due to the impact of RA but they internalise this rather than directing it at others. CONCLUSIONS: While some men adapt to their RA by renegotiating their masculine identity, others struggle to relinquish their traditional masculine roles. Further research is needed to identify whether the finding that there are 2 distinct groups of men with RA can be generalised, and if so whether the differences can be explained by clinical, social or psychological factors, which may inform different therapeutic approaches.

Characteristics of good quality pharmaceutical services common to community pharmacies and dispensing general practices.

BACKGROUND: In the United Kingdom, pharmaceutical services can be delivered by both community pharmacies (CPs) and dispensing doctor practices (DPs). Both must adhere to minimum standards set out in NHS regulations; however, no common framework exists to guide quality improvement. Previous phases of this research had developed a set of characteristics indicative of good pharmaceutical service provision. OBJECTIVE: To ask key stakeholders to confirm, and rank the importance of, a set of characteristics of good pharmaceutical service provision. METHODS: A two-round Delphi-type survey was conducted in south-west England and was sent to participants representing three stakeholder groups: DPs, CPs and patients/lay members. Participants were asked to confirm, and rank, the importance of these characteristics as representing good quality pharmaceutical services. KEY FINDINGS: Thirty people were sent the first round survey; 22 participants completed both rounds. Median ratings for the 23 characteristics showed that all were seen to represent important aspects of pharmaceutical service provision. Participants' comments highlighted potential problems with the practicality of the characteristics. Characteristics relating to patient safety were deemed to be the most important and those relating to public health the least important. CONCLUSIONS: A set of 23 characteristics for providing good pharmaceutical services in CPs and DPs was developed and attained approval from a sample of stakeholders. With further testing and wider discussion, it is hoped that the characteristics will form the basis of a quality improvement tool for CPs and DPs.

Lost to the NHS: a mixed methods study of why GPs leave practice early in England.

BACKGROUND: The loss of GPs in the early stages of their careers is contributing to the GP workforce crisis. Recruitment in the UK remains below the numbers needed to support the demand for GP care. AIM: To explore the reasons why GPs leave general practice early. DESIGN AND SETTING: A mixed methods study using online survey data triangulated with qualitative interviews. METHOD: Participants were GPs aged <50 years who had left the English Medical Performers List in the last 5 years (2009-2014). A total of 143 early GP leavers participated in an online survey, of which 21 took part in recorded telephone interviews. Survey data were analysed using descriptive statistics, and qualitative data using thematic analysis techniques. RESULTS: Reasons for leaving were cumulative and multifactorial. Organisational changes to the NHS have led to an increase in administrative tasks and overall workload that is perceived by GP participants to have fundamentally changed the doctor-patient relationship. Lack of time with patients has compromised the ability to practise more patient-centred care, and, with it, GPs' sense of professional autonomy and values, resulting in diminished job satisfaction. In this context, the additional pressures of increased patient demand and the negative media portrayal left many feeling unsupported and vulnerable to burnout and ill health, and, ultimately, to the decision to leave general practice. CONCLUSION: To improve retention of young GPs, the pace of administrative change needs to be minimised and the time spent by GPs on work that is not face-to-face patient care reduced.

Co-creation of information leaflets to meet the support needs of people living with complex regional pain syndrome (CRPS) through innovative use of wiki technology.

OBJECTIVE: People living with complex regional pain syndrome (CRPS) experience frustration with the lack of knowledge and understanding of CRPS as a pain condition. We report on our attempt to address this issue. METHODS: People living with CRPS taking part in a larger study were invited to co-construct a CRPS wiki page that addressed the areas in which they had experienced the most difficulty. A blank wiki page was set up for participants to populate with issues they felt needed to be raised and addressed. RESULTS: Participants failed to engage with the wiki technology. We modified our procedure and completed an inductive analysis of a sister-forum which participants were using as part of the larger study. Six issues of importance were identified. We used the discussion forum threads to populate the themes. Due to a continued lack of engagement with the wiki technology, the team decided to create a suite of leaflets which were piloted with delegates at a CRPS patient conference. CONCLUSIONS: Future work should be mindful of the extent to which patients are able and willing to share their experiences through such technology. Striking the balance between patient-endorsed and researcher-driven co-creation of such material is imperative.

Dispensing doctor practices and community pharmacies: exploring the quality of pharmaceutical services.

AIMS: This research sought (a) to investigate the similarities and differences in how pharmaceutical services are provided by community pharmacies (CPs) and dispensing doctor practices (DPs) and (b) to identify the issues relevant to determining the quality of pharmaceutical services in these settings. BACKGROUND: UK pharmaceutical services, including dispensing prescriptions and public health advice, can be provided from both (CP) and, in rural areas, (DP). While there is much similarity between CPs and DPs in the types of services provided, there is also the potential for variation in service quality across settings. METHODS: A postal questionnaire of DPs and CPs in South West England was conducted to provide a descriptive overview of pharmaceutical services across the settings. A subsection of questionnaire respondent sites were selected to take part in case studies, which involved documentary analyses, observation and staff interviews. FINDINGS: Survey response was 39% for CPs (52/134) and 48% (31/64) for DPs. There were three CP and four DP case study sites, with 17 staff interviews. More pharmacies than practices were open at the weekend and they had more staff trained above NVQ level 2. Both doctors and pharmacists saw themselves as medicines experts, as being accessible and having good relationships with patients. Workplace practices and organisational ethos varied both within and across settings, with good practice observed in both. Overall, CPs and DPs have much in common. Workplace culture and an evidence-based approach to checking prescriptions and error reporting need to be considered in future assessments of service quality.

Men, rheumatoid arthritis, psychosocial impact and self-management: A narrative review.

Rheumatoid arthritis is a chronic disease affecting fewer men than women. We systematically reviewed the literature on impact and self-management of rheumatoid arthritis in men. A total of 28 papers were included and grouped into two categories: psychosocial impact of rheumatoid arthritis, and coping and self-management. This review finds gender differences relating to quality of life, work, distress, self-management, coping and support. We conclude that there is a dearth of literature focussing on rheumatoid arthritis in men only, and mixed gender studies include insufficient men to draw strong conclusions about men. Thus, further research is needed to understand the support needs of men with rheumatoid arthritis in depth.

Research with adolescents who engage in non-suicidal self-injury: ethical considerations and challenges.

Non-suicidal self-injury (NSSI) has emerged as a significant psychiatric issue among youth. In addition to its high prevalence rates, NSSI is associated with a number of psychiatric issues and confers risk for varying degrees of physical injury. It is also a risk factor for attempted suicide. Thus, youth who engage in NSSI represent a vulnerable and high-risk population and researchers are likely to encounter a variety of ethical challenges when conducting NSSI research. Accordingly, it is critical that researchers be familiar with the major ethical issues involved in NSSI research and how to effectively account for and address them. This is important both prior to obtaining clearance from their Institutional Review Boards and when carrying out their research. To date, there is no consolidated resource to delineate the ethical challenges inherent to NSSI research and how these can be effectively navigated throughout the research process. The goals of this paper are to review international best practices in NSSI research across the various contexts within which it is studied, to offer guidelines for managing these issues, to identify areas in which variation in approaches prohibits decisive recommendations, and to generate questions in need of further consideration among scholars in this field.