Be Quiet and Man Up: A Qualitative Questionnaire Study into Fathers Who Witnessed Their Partner’s Birth Trauma

Background: Research focusing on paternal mental health is limited, especially regarding the impact of the experience of poor mental health in the perinatal period. For example, little is known about the experiences of fathers who witness their partner’s traumatic birth and the subsequent impact on their mental health. Therefore, the aim of this study was to explore fathers’ experiences of witnessing a traumatic birth, how these experiences impacted their wellbeing, and what support they received during and following the traumatic birth. Methods: Sixty-one fathers were recruited via targeted social media to complete an anonymous online qualitative questionnaire regarding their birth trauma experience. Eligible participants were fathers aged eighteen or over, resided in the UK and had witnessed their partner’s traumatic birth (that did not result in loss of life). Thematic analysis was used to analyse the questionnaire data. Results: Three main themes were identified: ‘fathers’ understanding of the experience’ (subthemes: nothing can prepare you for it; merely a passenger; mixed experiences with staff; not about me); ‘life after birth trauma’ (subthemes: manhood after birth; inability to be happy; impact on relationships); and ‘the support fathers received vs what they wanted’ (subthemes: prenatal support; birth support; and postnatal support). Conclusions: Fathers reported that witnessing their partner’s traumatic birth had a significant impact on them. They felt this affected their mental health and relationships long into the postnatal period. However, there is no nationally recognised support in place for fathers to use as a result of their experiences. The participants attributed this to being perceived as less important than women in the postnatal period, and maternity services’ perceptions of the father more generally. Implications include ensuring support is available for both the mother and father following a traumatic birth, with additional staff training geared towards the father’s role

A visualisation tool to analyse usage of web-based interventions: The example of Positive Online Weight Reduction (POWeR)

Background: Attrition is a significant problem in web-based interventions. Consequently, research aims to identify the relation between web usage and benefit from such interventions. We have developed a visualisation tool that enables researchers to more easily examine large data sets on intervention usage that can be difficult to make sense of using traditional descriptive or statistical techniques alone. Objectives: This paper demonstrates how the visualisation tool was used to explore patterns in participants’ use of a web-based weight management intervention (POWeR: Positive Online Weight Reduction). We also demonstrate how the visualisation tool can be used to inform subsequent statistical analyses of the association between usage patterns, participant characteristics, and intervention outcome. Methods: The visualisation tool was used to analyse data from 132 participants who had accessed at least one session of the POWeR intervention. Results: There was a drop in usage of optional sessions after participants had accessed the initial, core POWeR sessions, but many users nevertheless continued to complete goal and weight review. POWeR tools relating to the food diary and steps diary were re-used most often. Differences in participant characteristics and usage of other intervention components were identified between participants who did and did not choose to access optional POWeR sessions (in addition to the initial core sessions) or re-use the food and steps diary. Re-use of the steps diary and the getting support tools was associated with greater weight loss. Conclusions: The visualisation tool provided a quick and efficient method for exploring patterns of web usage, which enabled further analyses of whether different usage patterns were associated with participant characteristics or differences in intervention outcome. Further usage of visualisation techniques is recommended in order to 1) make sense of large data sets more quickly and efficiently, 2) determine the likely active ingredients in web-based interventions, and thereby enhance the benefit they may provide and 3) inform (re-)design of future interventions to promote greater use and engagement by enabling users to easily access valued intervention content/tools

Evaluation of a breathing retraining intervention to improve quality of life in asthma: quantitative process analysis of the BREATHE randomised controlled trial

Objective: Explore group differences between interventions (DVD and booklet (DVDB) versus face-to-face and booklet (F2FB), versus usual care) in the BREATHE trial of breathing retraining for asthma. Design: Quantitative process analysis exploring group expectancy, experience and practice before and after intervention delivery for the main trial. Setting: Primary care subjects: Adults with asthma (DVDB n = 261; F2FB n = 132). Main measures: Baseline - expectancy about breathing retraining; Follow-up 3, 6 and 12 months - self-efficacy, treatment experience (enjoyment of treatment, perceptions of physiotherapist, perceptions of barriers), amount of practice (weeks, days/week, times/day), continued practice; All time points - anxiety (Hospital Anxiety and Depression Scale), asthma QoL (Asthma Quality of Life Questionnaire). Results: No group differences in baseline expectancy. Statistically significant results (p<0.05) indicated that: At follow-up F2FB participants perceived greater need for a physiotherapist than DVDB participants (3.43 (0.87) versus 2.15 (1.26)). F2FB participants reported greater enjoyment of core techniques (such as stomach breathing 7.42(1.67) versus 6.13 (1.99) (DVDB)). Fewer F2FB participants reported problems due to doubts (24 (22.9%) versus 90 (54.2%). F2FB participants completed more practice sessions (75.01 (46.38) versus 48.56 (44.71)). Amount of practice was not significantly related to QoL. In the DVDB arm, greater confidence in breathing retraining ability explained 3.9% of variance in QoL at 12 months. Conclusions: Adults with asthma receiving breathing retraining face-to-face report greater enjoyment and undertaking more practice than those receiving a DVD and booklet, but practice is not related to QoL. Greater confidence in ability to do breathing retraining is associated with improved QoL

Fear of Missing Out (FoMO) as Really Lived: Five Classifications and one Ecology

Social media provides a platform for information sharing and issemination and has speedily become a popular method for individuals to relate to others regardless of the time and geographical distance. However, this wealth of connectivity and availability of information may lead to the experience of the Fear of Missing Out (FoMO) that typically refers to a preoccupation of the users of social media about lost opportunities when they are offline or unable to connect and communicate as wished. Despite the recognition of the concept, studies around FoMO have used offline data collection techniques such as interviews, focus groups and surveys. This has led to a limited understanding of the lived FoMO experience and a rather simplified and coarse-grained view of the concept. In this paper, we delve into the specifics and nuances of FoMO through multi-stage qualitative research, including interviews, diary study and three focus group sessions and elaborate upon the concept and determine its various manifestations and classification. The lived experience is mainly gathered through a diary study. We present five main classifications characterising FoMO and develop an ecology for it

Transparency in persuasive technology, immersive technology, and online marketing: facilitating users’ informed decision making and practical implications

In the current age of emerging technologies and big data, transparency has become an important issue for technology users and online consumers. However, there is a lack of consensus on what constitutes transparency across domains of research, not to mention transparency guidelines for designers and marketers. In this review, we explored the question of what transparency means in current research and practices by reviewing the literature in three domains: persuasive technology, immersive technology and online marketing. Literature reviewed, including both empirical research and position articles, covered multidisciplinary areas including computer science and information technology, psychology, healthcare, human computer interaction, business and management, law and public health. In this paper, we summarized our findings through a framework of transparency and provided insights into the different aspects of transparency, categorized into ten themes (i.e., Organizational Transparency, Information Transparency, Transparency of System Design, Data Privacy and Informed Consent, Transparency of Online Advertising, Potential Risks, User Autonomy, Informed Decision Making, Information Visualization, Personalization and User-centered design) along three dimensions (i.e., Types of transparency, Impact on User and Potential Solutions). Addressing aspects of transparency will facilitate users’ autonomy and contribute to their informed decision making

Implications of sperm banking for health-related quality of life up to 1 year after cancer diagnosis.

Sperm banking is recommended for all men diagnosed with cancer where treatment is associated with risk of long-term gonadatoxicity, to offer the opportunity of fatherhood and improved quality of life. However, uptake of sperm banking is lower than expected and little is known about why men refuse. Our aims were to determine: (i) demographic and medical variables associated with decisions about banking and (ii) differences in quality of life between bankers and non-bankers at diagnosis (Time 1 (T1)) and 1 year later (Time 2 (T2))

A randomised controlled study of the effectiveness of breathing retraining exercises taught by a physiotherapist either by instructional DVD or in face-to-face sessions in the management of asthma in adults.

BACKGROUND: Asthma control is suboptimal, resulting in quality of life (QoL) impairment and costs. Breathing retraining exercises have evidence of effectiveness as adjuvant treatment, but are infrequently used. OBJECTIVES: To transfer the contents of a brief (three-session) physiotherapist-delivered breathing retraining programme to a digital versatile disc (DVD) and booklet format; to compare the effectiveness of the self-guided intervention with that of 'face-to-face' physiotherapy and usual care for QoL and other asthma-related outcomes; to perform a health economic assessment of both interventions; and to perform a process evaluation using quantitative and qualitative methods. DESIGN: Parallel-group three-arm randomised controlled trial. SETTING: General practice surgeries in the UK. PARTICIPANTS: In total, 655 adults currently receiving asthma treatment with impaired asthma-related QoL were randomly allocated to the DVD (n = 261), physiotherapist (n = 132) and control (usual care) (n = 262) arms in a 2 : 1 : 2 ratio. It was not possible to blind participants but data collection and analysis were performed blinded. INTERVENTIONS: Physiotherapy-based breathing retraining delivered through three 'face-to-face' respiratory physiotherapist sessions or a self-guided programme (DVD plus our theory-based behaviour change booklet) developed by the research team, with a control of usual care. MAIN OUTCOME MEASURES: The primary outcome measure was asthma-specific QoL, measured using the Asthma Quality of Life Questionnaire (AQLQ). Secondary outcomes included asthma symptom control [Asthma Control Questionnaire (ACQ)], psychological state [Hospital Anxiety and Depression Scale (HADS)], hyperventilation symptoms (Nijmegen questionnaire), generic QoL [EuroQol-5 Dimensions (EQ-5D)], assessments of airway physiology (spirometry) and inflammation (exhaled nitric oxide) and health resource use and costs. Assessments were carried out at baseline and at 3, 6 and 12 months post randomisation. Patient engagement and experience were also assessed using quantitative and qualitative methods. RESULTS: Primary efficacy analysis was between-group comparison of changes in AQLQ scores from baseline to 12 months in the intention-to-treat population with adjustments for prespecified covariates. Significant improvements occurred in the DVD group compared with the control group [adjusted mean difference 0.28, 95% confidence interval (CI) 0.11 to 0.44; p < 0.001] and in the face-to-face physiotherapy group compared with the control group (adjusted mean difference 0.24, 95% CI 0.04 to 0.44; p < 0.05), with equivalence between the DVD and the face-to-face physiotherapy groups (adjusted mean difference 0.04, 95% CI -0.16 to 0.24). In all sensitivity analyses, both interventions remained significantly superior to the control and equivalence between the interventions was maintained. In other questionnaire outcome measures and in the physiological measures assessed, there were no significant between-group differences. Process evaluations showed that participants engaged well with both of the active interventions, but that some participants in the DVD arm would have liked to receive tuition from a professional. Asthma health-care costs were lower in both intervention arms than in the control group, indicating 'dominance' for both of the interventions compared with the control, with lowest costs in the DVD arm. The rate of adverse events was lower in the DVD and face-to-face physiotherapy groups than in the control group. CONCLUSIONS: Only 10% of the potentially eligible population responded to the study invitation. However, breathing retraining exercises improved QoL and reduced health-care costs in adults with asthma whose condition remains uncontrolled despite standard pharmacological therapy, were engaged with well by patients and can be delivered effectively as a self-guided intervention. The intervention should now be transferred to an internet-based platform and implementation studies performed. Interventions for younger patients should be developed and trialled. TRIAL REGISTRATION: Current Controlled Trials ISRCTN88318003. FUNDING: This project was primarily funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 21, No. 53. See the NIHR Journals Library website for further project information. Additional financial support was received from Comprehensive Local Research Networks

Sexual dysfunction and fertility-related distress in young adults with cancer over 5 years following diagnosis: study protocol of the Fex-Can Cohort study

BACKGROUND: There is a lack of firm knowledge regarding sexual problems and fertility-related distress in young adults following a diagnosis with cancer. Establishing such understanding is essential to identify patients in need of specific support and to develop cancer care accordingly. This study protocol describes the Fex-Can Cohort study, a population-based prospective cohort study investigating sexual dysfunction and fertility-related distress in young adults diagnosed with cancer in Sweden. The primary objective of the study is to determine the prevalence and predictors of sexual dysfunction and fertility-related distress following a cancer diagnosis in young adulthood compared to prevalence rates for the general population. Further aims are to investigate the trajectories of these issues over time, the co-existence between sexual dysfunction and fertility-related distress, and the relation between these issues and body image, anxiety and depression, health-related quality of life, self-efficacy related to sexuality and fertility, and fertility-related knowledge. METHODS: Participants in the Fex-Can Cohort will be identified via the Swedish National Quality Registries for Brain Tumors, Breast Cancer, Gynecological Oncology, Lymphoma, and Testicular Cancer. All patients diagnosed at the ages of 18-39, during a period of 18 months, will be invited to participate. Established instruments will be used to measure sexual function (PROMIS SexFS), fertility-related distress (RCAC), body image (BIS), anxiety and depression (HADS), and health-related quality of life (QLQ-C30); Self-efficacy and fertility-related knowledge will be assessed by study-specific measures. The survey will be administered to participants at baseline (approximately 1.5 year after diagnosis) and at 3 and 5 years post-diagnosis. Registry data will be used to collect clinical variables. A comparison group of 2000 young adults will be drawn from the Swedish population register (SPAR) and subsequently approached with the same measures as the cancer group. DISCUSSION: The study will determine the prevalence and predictors of sexual dysfunction and fertility-related distress in young men and women with cancer. The findings will form a basis for developing interventions to alleviate sexual problems and fertility-related distress in young adults with cancer in the short and long term. TRIAL REGISTRATION: This is an observational cohort study and clinical trial registration was therefore not obtained

Why don't some men with banked sperm respond to letters about their stored samples?

Long-term storage of banked sperm, especially when it is not needed, for reproductive purposes, is costly and poses practical problems for sperm banks. For sperm banks to function efficiently, men must understand the implications of unnecessary storage, and make timely decisions about disposal of their own samples. Men who bank sperm prior to cancer treatment are routinely offered follow-up consultations to test their fertility, update consent and, where necessary, expedite referral for Assisted Conception. Yet sperm banks report that men do not respond to letters, suggesting samples are stored needlessly. We conducted semi-structured interviews with six men with a history of not responding to letters, to document reasons for non-response. Interviews were transcribed and analysed using Interpretive Phenomenological Analysis. Men's reasons for not responding are a complex interplay between past, present and future perspectives. In terms of their past, information is important on diagnosis, because men must understand that fertility can change after treatment. Present and future concerns focus on fears of being told fertility has not recovered and being pressured to dispose of banked sperm. The challenge is to devise invitation letters that address men's concerns while offering them tangible benefits and peace of mind

The impact of treatment, socio-demographic and clinical characteristics on health-related quality of life among Hodgkin’s and non-Hodgkin’s lymphoma survivors: a systematic review

Cancer survivors are at risk of experiencing adverse physical and psychosocial effects of their cancer and its treatment. Both Hodgkin’s lymphoma (HL) and non-Hodgkin’s lymphoma (NHL) survivors face problems that can affect their health-related quality of life (HRQoL). The authors systematically reviewed the literature on HRQoL among HL and NHL survivors. A PubMed and PsychINFO literature search for original articles published until May 2011 was performed. Twenty-four articles, which met the predefined inclusion criteria, were subjected to a quality checklist. HL survivors showed the most problems in (role) physical, social and cognitive functioning, general health, fatigue and financial problems. In addition, HL survivors treated with a combination of therapies, with older age and female sex reported worse HRQoL. NHL survivors showed the most problems in physical functioning, appetite loss, vitality and financial problems. Having had chemotherapy was negatively associated with HRQoL, but no differences in chemotherapy regimens were found. Furthermore, in NHL survivors not meeting public exercise guidelines, HRQoL is low but can be improved with more exercise. More research on the longitudinal comparison between HL and NHL survivors and healthy controls should be performed in order to better understand the long-term (side) effects of treatment on HRQoL and possibilities to alleviate these