Behavioral Activation Mobile App to Motivate Smokers to Quit: Feasibility and Pilot Randomized Controlled Trial.

BACKGROUND: Behavioral activation (BA) is an evidence-based treatment for depression that fosters engagement in values-based activities to increase access to positive reinforcement. Depressed mood has been shown to hinder smoking cessation. OBJECTIVE: This study determined the feasibility and preliminary efficacy of a mobile app to motivate smokers to quit by using BA and integrating motivational messages to quit smoking. METHODS: Adult smokers (N=56; mean age 34.5, SD 9.52 years) who were not ready to quit smoking within 30 days were recruited from advertisements and randomized to either 8 weeks of the BA app (set 2 values-based activities per week+motivational messages+feedback on changes in smoking, mood, and values-based activities) or the control group (no app; received resources for quitting smoking). All participants completed the baseline and end-of-treatment web-based questionnaires. Controls also completed weekly web-based assessments, and BA app participants completed assessments through the app. RESULTS: There were no dropouts and only 2 participants in each condition did not complete the end-of-treatment questionnaire. The results demonstrated that it is feasible to recruit smokers who are unmotivated to quit into a smoking cessation induction trial: 86% (57/66) of eligible participants were randomized (BA app: n=27; control: n=29). Participants reported high levels of satisfaction: 80% (20/25) of participants said they would recommend the BA app, there were moderate-to-high scores on the Mobile App Rating Scale, and 88% (22/25) of participants rated the app 3 stars or higher (out of 5). There were high levels of BA app engagement: 96% (26/27) of participants planned activities, and 67% (18/27) of participants planned 7 or more activities. High engagement was found even among those who were at the highest risk for continued smoking (low motivation to quit, low confidence to quit, and high negative affect). The results provided support for the hypothesized relationships between BA constructs: greater pleasant activity completion was associated with greater positive affect (b=0.37, SE 0.21; 95% CI -0.05 to 0.79; P=.08), and greater positive affect tended to predict fewer cigarettes smoked the next day (b=-0.19, SE 0.10; 95% CI -0.39 to 0.01; P=.06). Additionally, a greater number of activities planned was associated with lower negative affect (b=-0.26, SE 0.15; 95% CI -0.55 to 0.04; P=.09). Overall, 16% (4/25) of BA app participants set a quit date versus 4% (1/27) among controls, and there were promising (but not significant) trends for motivation and confidence to quit. CONCLUSIONS: The findings suggest that a mobile app intervention can be made appealing to smokers who are unmotivated to quit by focusing on aspects most important to them, such as mood management. This theory-based intervention has shown some initial support for the underlying theoretical constructs, and further efficacy testing is warranted in a fully powered trial.

'The world was going through what we go through everyday': The experiences of women with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) living with their partners during the COVID-19 lockdown in the United Kingdom.

OBJECTIVES: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a long-term debilitating illness characterised by profound and persistent fatigue (JAMA: The Journal of the American Medical Association, 313, 2015, 1101). The current study aims to explore the experiences of women with ME/CFS living with their partners during the COVID-19 pandemic in the United Kingdom. DESIGN: The study adopted a qualitative design comprising semi-structured interviews with participants. Interviews were analysed using thematic analysis (TA). METHODS: Participants were women with ME/CFS (n = 21) recruited through ME/CFS support groups in the United Kingdom. All participants were in romantic relationships and lived with their partners. RESULTS: Data were organised into three themes: (1) lockdown disrupting routine, (2) reducing difference and (3) fear of getting COVID-19. People with ME/CFS found that lockdown disrupted their well-established routines. Although routines were disrupted by partners and increased working-from-home practices, participants found having partners at home helpful. People with ME/CFS believed that the changes induced by the pandemic reduced the differences between themselves and the outside world which, prior to lockdown, had felt prominent. They were fearful of getting COVID-19 as they believed this would make their ME/CFS worse. This meant that for people with ME/CFS, the lifting of the lockdown restrictions was an anxiety-provoking time, hence impacting symptoms. People with ME/CFS continued to adhere to government guidelines after national restrictions were eased. CONCLUSIONS: This study outlines the experiences of women with ME/CFS during COVID-19, alongside the long-term impact this has had due to the changes that the pandemic imposed. These findings may have implications for those with long COVID.

What factors are associated with informal carers' psychological morbidity during end-of-life home care? A systematic review and thematic synthesis of observational quantitative studies.

Background: Family carers are central in supporting patients nearing end of life. As a consequence, they often suffer detrimental impacts on their own mental health. Understanding what factors may affect carers' mental health is important in developing strategies to maintain their psychological well-being during caregiving. Aim: To conduct a systematic review and thematic evidence synthesis of factors related to carers' mental health during end-of-life caregiving. Method: Searches of MEDLINE, CINAHL, PsychINFO, Social Sciences Citation Index, EMBASE, Cochrane Central Register of Controlled Trials and Database of Abstracts of Reviews of Effects 1 January 2009-24 November 2019. We included observational quantitative studies focusing on adult informal/family carers for adult patients at end of life cared for at home considering any factor related to carer mental health (anxiety, depression, distress and quality of life) pre-bereavement. Newcastle-Ottawa Quality Assessment Scale was used. Thematic analysis with box score presentation, and meta-analysis were done where data permitted. Results: Findings from 63 included studies underpinned seven emergent themes. Patient condition (31 studies): worse patient psychological symptoms and quality of life were generally associated with worse carer mental health. Patient depression was associated with higher depression in carers (standardised mean difference = 0.59, 95% confidence interval 0.32 to 0.87, I2 = 77%). Patients' other symptoms and functional impairment may relate to carer mental health, but findings were unclear. Impact of caring responsibilities (14 studies): impact on carers' lives, task difficulty and general burden had clear associations with worse carer mental health. Relationships (8 studies): family dynamics and the quality of the carer-patient relationship may be important for carer mental health and are worthy of further investigation. Finance (6 studies): insufficient resources may relate to carers' mental health and warrant further study. Carers' psychological processes (13 studies): self-efficacy and preparedness were related to better mental health. However, findings regarding coping strategies were mixed. Support (18 studies): informal support given by family and friends may relate to better carer mental health, but evidence on formal support is limited. Having unmet needs was related to worse mental health, while satisfaction with care was related to better mental health. Contextual factors (16 studies): older age was generally associated with better carer mental health and being female was associated with worse mental health. Limitations: Studies were mainly cross-sectional (56) rather than longitudinal (7) which raises questions about the likely causal direction of relationships. One-third of studies had samples < 100, so many had limited statistical power to identify existing relationships. Conclusions and future work: Future work must adopt a comprehensive approach to improving carers' mental health because factors relating to carer mental health cover a broad spectrum. The literature on this topic is diverse and difficult to summarise, and the field would benefit from a clearer direction of enquiry guided by explanatory models. Future research should (1) further investigate quality of relationships and finances; (2) better define factors under investigation; (3) establish, through quantitative causal analyses, why factors might relate to mental health; and (4) utilise longitudinal designs more to aid understanding of likely causal direction of associations. Study registration: This study is registered as PROSPERO registration 2019 CRD42019130279 at https://www.crd.york.ac.uk/prospero/. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme HSDR 18/01/01 and is published in full in Health and Social Care Delivery Research. See the NIHR Funding and Awards website for further award information.

Family carers are central in supporting patients nearing end of life. However, their own mental health may often suffer as a result. It is important to understand what makes carers' mental health better or worse, to support them appropriately and help them stay in good health. To synthesise what is known about what can affect carers' mental health during end-of-life caregiving. We identified research literature (1 January 2009­24 November 2019) that looked at factors that may make carers' mental health better or worse when supporting someone nearing end of life. We focused on adult carers of adult patients cared for at home. Researchers worked with the help of a carer Review Advisory Panel to group similar factors into themes. This report presents research that used numerical measurements (for instance, surveys) to investigate factors related to carers' mental health. Findings from 63 studies were grouped into seven themes: (1) How the patient was: worse patient mental health and quality of life related to worse carer mental health. (2) How much caregiving affected carers' lives: greater impact, burden and feeling tasks were difficult related to worse mental health. (3) Relationships: good relationships between family members and between carer and patient seemed important for carer mental health. (4) Finance: having insufficient resources may affect carers' mental health. (5) Carers' internal processes (carers' thoughts and feelings): feeling confident and prepared for caregiving related to better mental health. (6) Support: carers' mental health seemed related to support given by family and friends and to getting sufficient, satisfactory support from formal services. (7) Background factors: older carers seemed generally to have better mental health, and female carers worse mental health overall. Factors that may affect carers' mental health are many and varied. We therefore need a broad strategy to help carers stay in good mental health during caregiving.

Involving carer advisors in evidence synthesis to improve carers' mental health during end-of-life home care: co-production during COVID-19 remote working.

Background: Family carers play a central role in supporting people at the end of life, but often suffer detrimental impacts on their own mental health as a result. This project conducted evidence synthesis of research into factors that may affect carers' mental health to help identify ways of maintaining their mental health. It worked closely with a carer Review Advisory Panel to help ensure the findings made sense and were communicated meaningfully from the carers' perspective. Aim: To present: (1) principles and components that facilitated successful patient and public involvement in an evidence synthesis project to help inform patient and public involvement in similar projects; (2) recommendations for carer support that were instigated and produced by the Review Advisory Panel. Process and principles: Nine Review Advisory Panel meetings including four to five carers, a lay Chair and three researchers were held. Solid 'groundwork' was invested in recruitment and relationship-building prior to meetings, and it was ensured that there was agreement of how to work together and clarification of expectations at the first meeting. Key meeting principles were: having a majority of carers, and a Chair with both carer and patient and public involvement experience, to ensure carer voices remained at the fore substantial researcher representation, including the project lead, to highlight the value placed on Review Advisory Panel meetings flexibility to follow carers' agendas, enabling 'space to talk' and 'space to change' appropriate and prompt carer payment, again emphasising patient and public involvement value to the project. Added general principles were: ongoing training, ample funded time for Review Advisory Panel preparation and ongoing communication outside meetings. COVID moved all meetings online after the first meeting, but the principles were maintained. Outputs: The project saw an evolution from patient and public involvement consultation to co-production. The main patient and public involvement output was recommendations for supporting carers based on project findings, instigated and produced by the Review Advisory Panel. Reflection on successful components and challenges: Five carers (including the Chair) and six researchers responded to questions by e-mail. Analysis by one researcher, aided by two other researchers, was then reviewed by all participants and revised. Both carers and researchers felt the components that made the patient and public involvement work were: (1) a shared sense of purpose of and gains from the Review Advisory Panel; (2) personal gains; (3) mutual commitment and respect; and (4) bridging between academic and lay perspectives, through investment in training, ensuring carers were able to meaningfully comment, and continuous negotiation and compromise. Challenges were that the COVID-induced move from face-to-face to online meetings reduced informality, flexibility, personal connection and non-verbal communication. However, earlier groundwork facilitated group resilience to these challenges. Patient and public involvement representation on the wider Research Management Group proved less successful, flagging the importance of negotiating and defining patient and public involvement roles at all project levels. Conclusion: The patient and public involvement principles employed, including meeting composition and chairing, and flexibility to follow carers' agendas, appeared to facilitate the evolution from consultation to co-production of carer recommendations, but require further testing. Preconditions for successful remote working should be further investigated, as the different advantages of face-to-face and virtual meetings may be combined through hybrid working. The iterative and responsive working required for genuine co-production may require more flexible patient and public involvement funding models. Study registration: This study is registered as PROSPERO registration 2019 CRD42019130279 at https://www.crd.york.ac.uk/prospero/. Funding: This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (grant 18/01/01) and will be published in full in Health and Social Care Delivery Research. See the NIHR Journals Library website for further project information.

Family carers are crucial in supporting people nearing the end of life, but their own mental health may often suffer as a consequence. This project summarised what is known about what makes carers' mental health better or worse. Researchers worked with a carer Review Advisory Panel to ensure that project findings were understandable and useful to carers. To report key findings on what made the teamwork between researchers and carers successful; to help improve teamwork in other projects; and to present carers' own recommendations on how to improve their mental health. Nine Review Advisory Panel meetings were held which included four to five carers, a lay Chair and three researchers. Important early preparation included getting to know each other and agreeing how to work together. Key meeting principles were: (1) bringing carer voices to the fore by having a majority of carers and an experienced carer as Chair; (2) highlighting the value placed on meetings by having several researchers attend, including the project lead; (3) flexibility to include carers' own agenda and project changes; and (4) appropriate and prompt carer payment. Meetings had to adapt to online working due to COVID-19. Carers moved from being advisors to taking more initiative and producing their own carer recommendations, which became a main project output. Written reflections by carers and researchers indicated that successful teamwork arose from a shared sense of purpose and gains, mutual commitment and respect, and bridging between researcher and carer perspectives through training, communication, negotiation and compromise. Early preparation helped the group adapt to the challenges of online working. Carer representation on other project committees could have been improved. Project principles enabled good researcher­carer teamwork and produced valuable carer recommendations, but need proper investment in time and resources. Online working can be successful, but needs good face-to-face preparation.

Understanding what affects psychological morbidity in informal carers when providing care at home for patients at the end of life: a systematic qualitative evidence synthesis.

Background: Informal carers are central in supporting patients at the end of life, but this has substantial negative impacts on carers' own mental health. When carers are unable to cope, this may affect their ability to support the patient and increase the likelihood of patient hospital admissions. Further, demographic changes mean demands for care at and before end of life are increasing and existing services will struggle to meet these demands. It is important to recognise carers as a vital resource and prevent adverse health outcomes from caregiving (and thereby limit their consequences). Large individual variation in the level of psychological morbidity from end-of-life caregiving suggests there is scope for interventions to improve carer mental health if we can understand the underlying factors. Objectives: This meta-synthesis of qualitative studies aims to identify factors reported by carers as important to their mental health. Data sources: Searches of MEDLINE, Cumulative Index to Nursing and Allied Health Literature, PsycINFO, Social Science Citation Index, EMBASE, Cochrane Central Register of Controlled Trials, Database of Abstracts of Reviews of Effects, and Cochrane Qualitative Reviews 1 January 2009 to 24 November 2019 for empirical publications from Organization for Economic Cooperation and Development countries in English/Scandinavian on factors affecting adult carer mental health during end-of-life caregiving in home settings. Review methods: Systematic qualitative meta-synthesis in collaboration with a Public Patient Involvement carer Review Advisory Panel, included thematic synthesis, followed by a best-fit framework synthesis, informed by principles of meta-ethnography. Critical Appraisal Skills Programme Qualitative Studies Checklist was used. Results: Thirty-three eligible studies identified six themes encompassing factors perceived by carers to affect their mental health during end-of-life caregiving. These were: (1) the patient condition (including patient decline); (2) impact of caring responsibilities (including exhaustion, lack of time for own needs, isolation); (3) relationships (including quality of the patient-carer relationship); (4) finances (including financial concerns, impact on work); (5) carers' internal processes (including loss of autonomy, lack of confidence, coping strategies); and (6) support (including lack of informal support, inadequacies in formal support information and care provision, limited collaboration, disjointed care). Reported strategies to improve mental health were linked to the final two themes, with suggestions on how to manage carers' internal processes and build appropriate support. Findings correspond with literature 1998-2008, indicating consistency in factors affecting carers and adding validity to findings. Limitations: The review was limited to caregiving in the home setting and studies from Organization for Economic Cooperation and Development countries published in English and Scandinavian. Identified papers predominantly considered carers of people with cancer, with little research into ethnic-minority perspectives. The review may therefore not fully encompass factors affecting carers of people with longer-term conditions, or those within other care settings, countries and population groups. Conclusions and future work: A wide range of both internal and contextual factors may lead to psychological morbidity when caring for someone at the end of life. Future work within practice therefore requires a broad-based rather than narrow approach to sustaining and improving carer mental health. Future work within research requires collaboration between researchers and stakeholders within policy, commissioning, practice and carer organisations to develop solutions and assess their effectiveness. Further, researchers need to develop better models for factors affecting carer mental health and their interaction, to build a stronger evidence base and better guide interventions. Study registration: This study is registered as PROSPERO CRD42019130279. Funding: This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number HSDR 18/01/01 and will be published in full in Health and Social Care Delivery Research. See the NIHR Journals Library website for further project information.

Being a carer for a family member or friend at the end of their life can have an impact on the carer's mental health. This includes depression, anxiety, stress and feeling overwhelmed. If carers feel unable to cope, they may be less able to look after their relative or friend. The mental health of carers must be a priority to help them feel better, cope, and support patients. This review summarises information from research into things that carers say are important for their mental health, to help us understand how we may be able to maintain or improve carers' mental health. We worked with six carers in a Review Advisory Panel to search for studies on carers' experience published between 1 January 2009 and 24 November 2019 and identify common themes from identified studies. Themes were put into a table of themes and subthemes, assessed by the carers, and compared with other literature to identify factors that caused carers to have poor mental health, and ways to help carers feel better. We found six themes that indicate how caring for those at the end of life can affect mental health. These include: the impact of the patient condition and seeing the patient decline; the impact of caring responsibilities; carers' relationship with the patient; finances; carers' feelings and experiences such as lack of control or confidence when caring; and support from other family, friends and health-care professionals. Strategies to improve mental health were linked to the final two themes, including how to manage carers' views and experiences of their situation and how to gain appropriate support. This study describes factors that lead to poor mental health and ways to improve mental health when caring for someone at the end of life. Further work is needed to use this information to inform policy and service delivery.

Cost-effectiveness of cognitive behavioural and personalized exercise interventions for reducing fatigue in inflammatory rheumatic diseases.

OBJECTIVES: To estimate the cost-effectiveness of a cognitive behavioural approach (CBA) or a personalized exercise programme (PEP), alongside usual care (UC), in patients with inflammatory rheumatic diseases who report chronic, moderate to severe fatigue. METHODS: A within-trial cost-utility analysis was conducted using individual patient data collected within a multicentre, three-arm randomized controlled trial over a 56-week period. The primary economic analysis was conducted from the UK National Health Service (NHS) perspective. Uncertainty was explored using cost-effectiveness acceptability curves and sensitivity analysis. RESULTS: Complete-case analysis showed that, compared with UC, both PEP and CBA were more expensive [adjusted mean cost difference: PEP £569 (95% CI: £464, £665); CBA £845 (95% CI: £717, £993)] and, in the case of PEP, significantly more effective [adjusted mean quality-adjusted life year (QALY) difference: PEP 0.043 (95% CI: 0.019, 0.068); CBA 0.001 (95% CI: -0.022, 0.022)]. These led to an incremental cost-effectiveness ratio (ICER) of £13 159 for PEP vs UC, and £793 777 for CBA vs UC. Non-parametric bootstrapping showed that, at a threshold value of £20 000 per QALY gained, PEP had a probability of 88% of being cost-effective. In multiple imputation analysis, PEP was associated with significant incremental costs of £428 (95% CI: £324, £511) and a non-significant QALY gain of 0.016 (95% CI: -0.003, 0.035), leading to an ICER of £26 822 vs UC. The estimates from sensitivity analyses were consistent with these results. CONCLUSION: The addition of a PEP alongside UC is likely to provide a cost-effective use of health care resources.

Psychological well-being in persons with dementia: The role of caregiver expressed emotion.

OBJECTIVES: Dementia is a growing health concern. Persons with dementia experience higher levels of anxiety and depression, which correlates with poorer quality of life, disability and hospitalization. This is one of the few studies to use a longitudinal design to assess the impact of expressed emotion (EE) on well-being in dementia over time. METHODS: Sixty-one people with dementia and their main informal caregiver were recruited from memory services. Caregiver EE was coded from a Camberwell Family Interview conducted at time one. Person with dementia's outcome measures (quality of life, depression and anxiety) were collected at time one and at 6-months follow-up. RESULTS: Caregiver high EE was associated with higher levels of depression in people with dementia and greater anxiety at follow-up. Emotional over involvement predicted greater anxiety and critical comments predicted greater depression. Low EE appeared to have a protective effect on well-being in people with dementia. People with dementia with low EE caregivers experienced a small reduction in depression and anxiety over time, whereas those with high-EE caregivers maintained baseline levels of depression and anxiety. CONCLUSIONS: Caregiver high EE is associated with poorer psychological outcomes for people with dementia over time. Psychological therapies, such as cognitive behavioural therapy informed family interventions should be used to reduce high EE within carer and person with dementia relationships.

Remotely delivered cognitive behavioural and personalised exercise interventions for fatigue severity and impact in inflammatory rheumatic diseases (LIFT): a multicentre, randomised, controlled, open-label, parallel-group trial.

Background: Chronic fatigue is a poorly managed problem in people with inflammatory rheumatic diseases. Cognitive behavioural approaches (CBA) and personalised exercise programmes (PEP) can be effective, but they are not often implemented because their effectivenesses across the different inflammatory rheumatic diseases are unknown and regular face-to-face sessions are often undesirable, especially during a pandemic. We hypothesised that remotely delivered CBA and PEP would effectively alleviate fatigue severity and life impact across inflammatory rheumatic diseases. Methods: LIFT is a multicentre, randomised, controlled, open-label, parallel-group trial to assess usual care alongside telephone-delivered CBA or PEP against usual care alone in UK hospitals. Patients with any stable inflammatory rheumatic disease were eligible if they reported clinically significant, persistent fatigue. Treatment allocation was assigned by a web-based randomisation system. CBA and PEP sessions were delivered over 6 months by trained health professionals in rheumatology. Coprimary outcomes were fatigue severity (Chalder Fatigue Scale) and impact (Fatigue Severity Scale) at 56 weeks. The primary analysis was by full analysis set. This study was registered at ClinicalTrials.gov (NCT03248518). Findings: From Sept 4, 2017, to Sept 30, 2019, we randomly assigned and treated 367 participants to PEP (n=124; one participant withdrew after being randomly assinged), CBA (n=121), or usual care alone (n=122), of whom 274 (75%) were women and 92 (25%) were men with an overall mean age of 57·5 (SD 12·7) years. Analyses for Chalder Fatigue Scale included 101 participants in the PEP group, 107 in the CBA group, and 107 in the usual care group and for Fatigue Severity Scale included 101 in PEP, 106 in CBA, and 107 in usual care groups. PEP and CBA significantly improved fatigue severity (Chalder Fatigue Scale; PEP: adjusted mean difference -3·03 [97·5% CI -5·05 to -1·02], p=0·0007; CBA: -2·36 [-4·28 to -0·44], p=0·0058) and fatigue impact (Fatigue Severity Scale; PEP: -0·64 [-0·95 to -0·33], p<0·0001; CBA: -0·58 [-0·87 to -0·28], p<0·0001); compared with usual care alone at 56 weeks. No trial-related serious adverse events were reported. Interpretation: Telephone-delivered CBA and PEP produced and maintained statistically and clinically significant reductions in the severity and impact of fatigue in a variety of inflammatory rheumatic diseases. These interventions should be considered as a key component of inflammatory rheumatic disease management in routine clinical practice. Funding: Versus Arthritis.

Therapists' experiences of remotely delivering cognitive-behavioural or graded-exercise interventions for fatigue: a qualitative evaluation.

Objective: Fatigue is a challenging feature of all inflammatory rheumatic diseases. LIFT (Lessening the Impact of Fatigue in inflammatory rheumatic diseases: a randomized Trial) included remotely delivered personalized exercise programme (PEP) or cognitive-behavioural approach (CBA) interventions. The aim of this nested qualitative evaluation was to understand rheumatology health professionals' (therapists') perspectives of delivering the interventions in the LIFT trial. Methods: A subgroup of therapists who had delivered the personalized exercise programme (PEP) and cognitive-behavioural approach (CBA) interventions took part in semi-structured telephone interviews. Results: Seventeen therapists (13 women and 4 men) who delivered PEP (n = 8) or CBA (n = 9) interventions participated. Five themes were identified. In 'The benefits of informative, structured training', therapists described how they were able to practice their skills, and the convenience of having the LIFT manual for reference. When 'Getting into the swing of it', supporting patients gave therapists the confidence to tailor the content of the manual to each patient. Clinical supervision supported therapists to gain feedback and request assistance when required. In 'Delivering the intervention', therapists reported that patients valued the opportunity to talk about their fatigue and challenge their beliefs. In 'Challenges in delivering the LIFT intervention', therapists struggled to work in partnership with patients who lacked motivation or stopped engaging. Finally, in 'LIFT developing clinical skills', therapists gained confidence and professional satisfaction, seeing patients' fatigue improve over time. Conclusion: The findings support the provision of training for rheumatology health professionals to remotely deliver fatigue-management interventions. Insights from these trials can be used to better improve clinical practice and service provision.

Remotely delivered cognitive-behavioural and personalized exercise interventions to lessen the impact of fatigue: a qualitative evaluation.

Objectives: Fatigue can be a disabling symptom of inflammatory rheumatic diseases. LIFT (Lessening the Impact of Fatigue in inflammatory rheumatic diseases: a randomized Trial) is a randomized trial of remotely delivered cognitive-behavioural approach or personalized exercise programme interventions, compared with usual care. The aim of this nested qualitative study was to evaluate participants' experiences of taking part in the intervention, including their ideas about future service delivery. Methods: Semi-structured telephone interviews were conducted with a subgroup of LIFT participants to discuss their views and experiences of the interventions. Results: Forty-three participants (30 women) from six sites who had participated in the cognitive-behavioural approach (n = 22) or personalized exercise programme (n = 21) interventions took part. Five themes were identified in the thematic analysis. In the theme 'not a miracle cure, but a way to better manage fatigue', LIFT could not cure fatigue; however, most felt better able to manage after participating. Participants valued 'building a therapeutic relationship' with the same therapist throughout the intervention. In 'structure, self-monitoring and being accountable', participants liked the inclusion of goal-setting techniques and were motivated by reporting back to the therapist.After taking part in the interventions, participants felt 'better equipped to cope with fatigue'; more confident and empowered. Lastly, participants shared ideas for 'a tailored programme delivered remotely', including follow-up sessions, video calling, and group-based sessions for social support. Conclusion: Many participants engaged with the LIFT interventions and reported benefits of taking part. This suggests an important future role for the remote delivery of fatigue self-management.

Romantic attachment and support adequacy in new mothers.

In the present research, we examined whether attachment anxiety and avoidance in support recipients were related to the extent to which social support received from a romantic partner matched the actual needs of the recipient. Two-hundred and forty-five first-time mothers, currently involved in romantic relationships, participated in study 1, in which perceptions of support were appraised over the previous month using self-reports. In study 2, we sought to replicate these findings using an experience sampling method to examine the association between attachment and momentary support perceptions in the daily life of mothers with babies (N = 40). Results indicated that high levels of attachment avoidance or anxiety in mothers were associated with negative appraisals of support matching. Receiving support which matched the needs of the mother (i.e., adequate support) was beneficial to mood, but not constructive to relationship satisfaction or perceptions of maternal efficacy.

Investigating expressed emotion in individuals at-risk of developing psychosis and their families over 12 months.

High levels of expressed emotion (EE) are present in families of individuals with an at-risk mental state (ARMS) of psychosis and can negatively impact on service users' functioning and symptoms, as well as relatives' psychological wellbeing. OBJECTIVES: This is the first longitudinal study to assess EE from the family/carers' perspective, as well as the service users' perceptions of the family/carers' EE. We explored the effects of EE on transition risk and outcomes of depression, worry, and anxiety. METHODS: Questionnaires were completed by 70 ARMS individuals and 70 family/carers at three time points: baseline, 6 and 12 months. All participants completed measures of anxiety, depression, and worry, plus a version of the Family Questionnaire to assess EE. RESULTS: EE scores reduced over time for both service users and family/carers. High EE perceived by service users at 6 months was associated with higher transition to psychosis at 12 months. High-EE levels at baseline were associated with higher levels of service user depression and family/carer anxiety at 12 months. Higher family/carer total EE scores were associated with less contact with the service user and higher levels of worry. CONCLUSIONS: Novel implications suggest that interventions to reduce high EE in families of people with ARMS would benefit service users by protecting them from higher levels of depression and transition to psychosis. Reducing high-EE attitudes would also benefit the family/carers by reducing levels of anxiety and worry. Family interventions focussing on multiple perceptions of the home environment could help to direct services and prevent negative psychological outcomes for all family members.

Patients' Experiences of Deciding Whether or Not to Accept Bone Conduction Hearing Implants: A Qualitative Investigation.

OBJECTIVES: Bone conduction hearing implants (BCHIs) are an effective option to rehabilitate hearing for people who cannot use conventional, air conduction hearing aids. However, the uptake of such devices in the United Kingdom is lower than might be expected, and the reasons for this are not fully understood. The present study used qualitative methods to explore decision-making about whether to accept or reject BCHIs. DESIGN: Semistructured telephone interviews were conducted with 17 BCHI candidates who had recently accepted or rejected BCHIs. RESULTS: A thematic analysis identified four overarching themes: participants wanted to look and feel normal; potential risks were weighed against rewards; participants felt that there was a "right time" to have a BCHI; and information from clinicians and BCHI users was treated differently. Participants' perceptions of normality were influential in the final decision, and the BHCI was seen either as a barrier or facilitator of this. Participants consistently weighed up potential advantages and disadvantages of BCHIs, with potential for hearing improvement typically used as a benchmark against which other factors were measured. Some participants who rejected BCHIs felt that they could reconsider having a BCHI when they felt the time was right for them. Participants highly valued advice from clinicians, but felt that their expertise lacked validity as clinicians typically did not have experience of using BCHIs themselves. CONCLUSIONS: The decision to accept or reject a BCHI was highly individual. Each participant considered a range of factors; the influence of each factor depended on the individual's perceptions and experiences. This work highlights the importance of clinical staff being able to explore the individual priorities and concerns of each patient to ensure that patients feel happy and confident with the decision that they make.

Development of a measure for patients preparing to start dialysis and their partners: The Starting Dialysis Questionnaire (SDQ).

BACKGROUND: The transition onto dialysis is a stressful time that affects both patients and their partners. Research suggests that psychological and interpersonal characteristics within the couple are related to how well they adapt to dialysis. The aim of this multi-phase, mixed methods study was to develop a measure, the Starting Dialysis Questionnaire (SDQ), that is applicable to both patients and their partners and assesses their own thoughts and feelings about these constructs. METHODS: Data from semi-structured interviews with patients and their partners (n = 22 couples) were analysed using theoretical thematic analysis to identify and define constructs related to quality of life (QOL). Next, items addressing these constructs were derived from the interviews. Then, cognitive interviews were conducted with patients with chronic kidney disease and their partners (n = 5 couples) to assess the face validity and comprehensibility of the items. Lastly, preliminary psychometric properties were evaluated in a sample of patients preparing to start dialysis and their partners (n = 83 couples). RESULTS: Three themes related to QOL were identified, namely dialysis expectations, accepting dialysis and dyadic relationship characteristics. The cognitive interviews refined the SDQ and established its face validity. Psychometric assessments indicated that overall the items performed well and did not show significant floor or ceiling effects. Good internal consistency was found within the three domains, and items correlated within the domains. CONCLUSIONS: The SDQ is a measure (34 items) that assesses key psychological and interpersonal factors in patients and their partners as they start dialysis. It shows good preliminary psychometric properties; however, a large-scale field trial is needed to establish its validity. Once validated, it could offer a clinically useful tool to assist clinicians in preparing patients and partners for dialysis.

Correction to: Quality of life improved for patients after starting dialysis but is impaired, initially, for their partners: a multi-centre, longitudinal study.

An amendment to this paper has been published and can be accessed via the original article.

Online support group users' perceptions and experiences of bone-anchored hearing aids (BAHAs): a qualitative study.

Objective: Better understanding of the decision-making process for bone-anchored hearing aid (BAHA) candidates has been identified by clinicians as a research priority. This study aimed to understand experiences and perceptions of BAHA candidates and users who use online support groups.Design: One thousand posts retrieved from a public UK-based online support group were thematically analysed.Study sample: Messages were posted by 270 BAHA users and candidates.Results: Individuals used the online group to obtain information about BAHAs and support for decision-making regarding accepting BAHA surgery and wearing a percutaneous device. BAHA users evaluated the efficacy of the system, perceiving it to be highly effective in improving their hearing. The BAHA influenced individuals' self-image and impacted their social lives. Fears of surgery and post-implantation infections were regarded as challenges to be faced when choosing to accept implantation.Conclusions: BAHA candidates found the online support group useful in helping them to decide whether or not to proceed with surgery, and the personal experiences of BAHA users were predominantly positive. However, it is not clear to what extent such positive experiences are representative of BAHA users more generally, and candidates need to be aware of this when using these groups to support decision-making.

Quality of life improved for patients after starting dialysis but is impaired, initially, for their partners: a multi-centre, longitudinal study.

BACKGROUND: Quality of life (QOL) is important to patients with end stage renal disease and their partners. Despite the first 12 weeks being a critical time in the treatment pathway, limited research exists which examines how the transition onto dialysis impacts QOL. In this study we measured QOL in patients and their partners at pre-dialysis and over the first 12 weeks on dialysis to investigate QOL during this crucial period. METHODS: Patients and their partners, recruited from 10 renal units in England, completed questionnaires at pre-dialysis (n = 166 participants, 83 couples), 6 weeks (n = 90 participants, 45 couples) and 12 weeks (n = 78, 39 couples) after starting dialysis. On each occasion participants completed a QOL questionnaire (WHOQOL-BREF). Multilevel modelling accommodated the nested structure of couples with repeated measures within participants. Three-level random intercept models estimated changes in WHOQOL general QOL and its four domains (Physical, Psychological, Social and Environment). Two-level random intercept models assessed the relationship between baseline clinical and socio-demographic variables with changes in general QOL. RESULTS: Patients reported positive changes in general QOL from pre-dialysis to 6 weeks (ß = 0.42, p < 0.001, 95% CI 0.19, 0.65) and from pre-dialysis to 12 weeks (ß = 0.47, p < 0.001, 95% CI 0.24, 0.71). Partners' general QOL decreased significantly from pre-dialysis to 6 weeks (ß = - 0.24, p = 0.04, 95% CI -0.47, - 0.01) but returned to its original level at 12 weeks. Patients reported improvements in the physical domain between pre-dialysis and 12 weeks (ß = 6.56, p < 0.004, 95% CI 2.10, 11.03). No other domains changed significantly in patients or partners. Only in patients were there significant associations between moderator variables and general QOL. High comorbidity risk level and diabetes were associated with poorer QOL at pre-dialysis whereas being female and having an arteriovenous fistula were linked with improvements in general QOL. CONCLUSIONS: Patients reported significant improvements in their general and physical QOL after starting dialysis. Partners' general QOL worsened after patients started dialysis but improved by 12 weeks. Both patients and partners may benefit from additional educational and counselling services in the lead up to, and immediately after starting dialysis, which could facilitate the transition onto dialysis and improve QOL in both. STUDY REGISTRATION: This study was adopted on the NIHR Clinical Research Network (UK). The details of this study are registered on the Research Registry website (www.researchregistry.com). The identifier for this study is researchregistry2574.

The role of partners' fatigue and the patient-partner relationship in the outcome of cognitive behavioural therapy for chronic fatigue syndrome.

BACKGROUND: In chronic fatigue syndrome (CFS) little is known about how partner-related factors influence patients' fatigue symptoms and treatment outcome. We examined partners' fatigue severity, and determined the role of partner-related factors for patients' symptoms and the outcome of cognitive behavioural therapy (CBT). METHODS: 1356 CFS patients and their partners completed baseline measures of fatigue severity (Checklist Individual Strength), causal attributions of symptoms, partner responses to patient symptoms, and relationship satisfaction. Fatigue in partners of patients with CFS was compared with fatigue in age- and gender-matched controls from the Dutch population. Associations between partners' fatigue severity and other partner-related factors were determined. In a subgroup of 760 CFS patients who completed CBT, logistic regression analyses were used to identify partner-related baseline predictors for treatment outcome (fatigue severity, functional impairment). RESULTS: Partners' fatigue (M = 21.66, SD 11.60) was significantly lower than in controls (M = 24.58, SD = 11.02) (p < .001) and not related to patients' fatigue (r = -0.02, p = .58). Partners' fatigue was correlated with patients' functional impairment (p = .001), partners' and patients' relationship dissatisfaction, negative partner responses, and partners' and patients' psychological attributions of patient symptoms at baseline (all p < .001). After controlling for patients' baseline fatigue severity and functional impairment, only relationship dissatisfaction as reported by (female) patients significantly predicted worse treatment outcome. For male patients with female partners, higher partners' fatigue severity predicted higher fatigue severity after CBT. CONCLUSIONS: Female partners' fatigue and relationship dissatisfaction as reported by the female patient should be addressed in CBT for CFS, as these factors affect treatment outcome.

Attachment and social support in romantic dyads: A systematic review.

OBJECTIVE: Taking a dyadic perspective, this systematic review examined the relationship between attachment constructs and differences in support behavior in romantic couples. METHOD: Four databases were searched including PsychINFO, Embase, OVOID MEDLINE, and AMED. Out of 2,401 unique references, 43 met the study inclusion criteria. RESULTS: The review findings offer validation for an attachment-based model of support processes in couples. Maladaptive support behaviors were more likely to occur when one or both members of a romantic dyad had an insecure attachment. Individuals with an avoidant or anxious attachment were more likely to provide poor quality support, and when receiving support, to interpret it in a negative manner. CONCLUSION: We recommend therapeutic interventions to help individuals with insecure attachments to follow more adaptive ways of support seeking, so social relationships are more able to offer a buffering effect against the development of mental health problems.

Impact of Dialysis on the Dyadic Relationship Between Male Patients and Their Female Partners.

The objective of this study was to explore the impact of three early phases of renal dialysis, namely pre-dialysis, starting dialysis, and establishing dialysis, on dyadic relationships. Twenty UK-based dyads (20 male patients and their female partners) participated in semi-structured interviews and discussed the effects of dialysis on themselves and their relationship. Dyadic thematic analysis, facilitated by dyadic-level charting, integrated participants' experiences and enabled identification of patterns across dyads. We found that dialysis had positive and negative influences on identity, social relationships, and mental health, forming the themes: Prioritizing the Patient, Carrying the Burden, and Changing Identities. The final theme, Managing the Relationship, described how dyads prevented dialysis from negatively impacting their relationship. Dyadic-level charting provided a systematic examination of individual and dyadic experiences. These findings indicate that access to informational and support services for dyads as they prepare to start dialysis may minimize negative effects on their relationship.