Corrigendum: A longitudinal investigation of quality of life and negative emotions in misophonia.

[This corrects the article DOI: 10.3389/fnins.2022.900474.].

"I'm Not the Same Person Anymore": Thematic Analysis Exploring Experiences of Dependence to Prescribed Analgesics in Patients with Chronic Pain in the UK.

INTRODUCTION: The rising issue of dependence to prescribed pain medication for patients with chronic pain has been highlighted in the literature; however, there is a dearth of research exploring the patient perspective of this dependence in the United Kingdom (UK). This exploratory qualitative study aimed to investigate experiences of prescribed analgesic dependence in patients with chronic pain in the UK. METHODS: Semi-structured interviews were conducted with nine UK-based participants (eight females, one male) with a mean age of 44, who experienced chronic pain and identified as dependent to their prescribed pain medication. The interviews were recorded and transcribed verbatim and the data analysed using thematic analysis. RESULTS: Three main themes emerged, including perceptions of dependence, interactions with others, and interactions with medical professionals. The findings revealed how the experiences focused on the participants' own perception of their dependence, such as its perceived impact on their life and how the dependence began, and the relation of the dependence to their social environment, for example, doctor-patient relations. CONCLUSIONS: These findings suggest practical implications for the management of dependence such as, raising awareness of the risks of dependence with these medications in the UK, and stricter observation of those taking the medications to identify dependence issues early.

A growing number of people with chronic pain are prescribed analgesics (painkillers) by a medical professional to manage their pain; however, these painkillers are often addictive and can cause dependence for those taking them. Despite the growing number of dependent patients, there is a lack of research into this type of dependence in the United Kingdom (UK). This study aimed to speak to people affected by this dependence and understand their point of view. Nine people were interviewed. The interviews were recorded and transcribed. Their words were analysed using thematic analysis, which helps to find the common themes in experiences. Three themes were developed including: what they thought of their dependence, how they felt their dependence affected their relationships with other people, and how relationships with doctors interplayed with their dependence. Their experiences were mainly negative and suggest improvements could be made in the UK healthcare system to support these individuals and help prevent this type of dependence.

When things go wrong: experiences of vaginal mesh complications.

INTRODUCTION: Previous research has suggested that complications stemming from vaginal mesh can lead to life-changing negative physical consequences including erosion and chronic pain. However, there has been little research on the experiences of women who have had complications. This study was aimed at exploring the individual experiences of women who have had vaginal mesh complications and how this has impacted them. METHODS: An explorative qualitative design was followed. Eighteen semi-structured interviews were conducted with women who had experienced complications with vaginal mesh due to stress urinary incontinence and pelvic organ prolapse. The mean age was 52 and the mean time since the mesh was fitted was 8 years (6 had since had it removed and a further 6 had had partial removal), and the mean time since first mesh-related symptom was 10 months. Data were analysed using thematic analysis. RESULTS: Four main themes were identified: perceived impact of mesh complications, attitudes of medical professionals, social support and positive growth. Results showed that participant experiences of their mesh complication were psychologically traumatic, including feelings of increased anxiety and fears relating to suicidal thoughts. Intimate relationships were also affected, with reduced sexual functioning and intimacy stemming from mesh complications. Negative experiences with medical professionals included feeling dismissed, a lack of recognition of their symptoms, and anger towards the profession. CONCLUSIONS: The impacts of vaginal mesh complications were found to be wide-reaching and life-changing, affecting numerous aspects of participants' lives. Greater awareness in this area is needed to provide further support for women experiencing vaginal mesh complications.

A nation-wide survey exploring the views of current and future use of functional electrical stimulation in spinal cord injury.

PURPOSE: Functional electrical stimulation (FES) can be effective in assisting physical and psychosocial difficulties experienced by people with spinal cord injury. Perceived benefits and barriers of the current and future use of FES within the wider spinal cord injury community is currently unknown. The main objective of this research was to explore the spinal cord injury community's views of the use of FES to decrease disability in rehabilitation programmes. MATERIALS AND METHODS: An online and paper questionnaire was distributed to people with spinal cord injury, health care professionals and researchers working in spinal cord injury settings in the United Kingdom. RESULTS: A total of 299 participants completed the survey (152 people with spinal cord injury, 141 health care professionals and 6 researchers). Common views between groups identified were: (1) FES can be beneficial in improving physical and psychosocial aspects and that (2) adequate support and training for FES application was provided to users. Barriers to FES use included a lack of staff time and training, financial cost and availability of the equipment. Sixty three percent of non-users felt they would use FES in the future if they had the opportunity. CONCLUSIONS: Users' views were important in identifying that FES application can be beneficial for people with spinal cord injury but also has some resourceful barriers. In order to increase use, future research should focus on reducing the cost of FES clinical service and also address implementation of awareness and training programmes within spinal units and community rehabilitation settings.IMPLICATIONS FOR REHABILITATIONUsers of functional electrical stimulation think that it is beneficial for improving physical and psychosocial limitations after spinal cord injuryBarriers to FES use include a lack of staff time and training, financial cost and availability of the equipment have been suggested by people with spinal cord injury and health care professionalsEducation and implementation programs for health care professionals and people with spinal cord injury are now necessary to increase the awareness about functional electrical stimulation applicationReduction of FES cost could also increase its uptake in spinal cord injury clinical services.

A longitudinal investigation of quality of life and negative emotions in misophonia.

Aims: This longitudinal study examined the role of anger, disgust, and anxiety in the experience of misophonia, the quality of life of those with self-reported misophonia in comparison to those without misophonia, and the association of misophonia and quality of life over time. Methods: An online longitudinal survey was conducted, with misophonia, anger, disgust, anxiety, depression, self-esteem, and quality of life measured at two time points (6-months apart) in two groups of people (those with self-reported misophonia and those without misophonia). Results: Anger and disgust emerged as the primary predictors of misophonic responses. Anxiety and depression were not significantly associated with misophonia over time. Differences in quality of life were observed between those with and without self-reported misophonia in the current study, with lower scores across the SF-36 domains of role limitations due to emotional problems, energy/fatigue, emotional wellbeing, social functioning, and general health for those with misophonia compared to those without misophonia. Compared with other studies, scores for those with self-reported misophonia were lower than those with long-term physical conditions, similar to those with tinnitus, but higher than those with obsessive compulsive disorder. Misophonia was predictive of quality of life over time but only on two domains: role limitations due to emotional problems (predictors: avoidance, emotional responses, and impact on participation in life) and pain (predictor: impact on participation in life). Depression remained a strong predictor of quality of life over time. Conclusion: Anger and disgust are more strongly associated with the experience of misophonia than anxiety. Quality of life in people with self-reported misophonia is lower than in the general population and may be similar to those with tinnitus. Depression, avoiding triggers, the extent of the emotional response, and perceived impact on participation in life are associated with perceptions of lower quality of life over time for people with self-reported misophonia.

'It's being a part of a grand tradition, a grand counter-culture which involves communities': A qualitative investigation of autistic community connectedness.

LAY ABSTRACT: A sense of being connected to other autistic people has been reported anecdotally. Friendships and connectedness may be important to autistic people and beneficial for their wellbeing. Our research aimed to understand the autistic community by interviewing 20 autistic people about their experiences of being connected to other autistic people. Participants were interviewed in person, over video, using a text-based software to type or over email. Participants detailed three parts of autistic community connectedness: a sense of belonging, social connection with autistic friends and political connectedness. The friendships autistic people had with one another were deemed to be very important to participants because it gave them confidence, provided companionship and made them happy. Some participants did not experience connectedness to the autistic community. These participants also found autism to be less important to their identity and had fewer positive feelings about being autistic. This research is important as it raises awareness that community connectedness is viewed as important to this group. It is possible that community connectedness may help protect the mental health of autistic people when they face stigma or negative life experiences in society.

The experience of relatives using intensive care diaries: A systematic review and qualitative synthesis.

BACKGROUND: Intensive care patient diaries written by staff and/or relatives are widely used in intensive care units (ICUs) across the world. Although the original aim of the diaries was to support patients in their recovery from ICU, a more recent focus of the literature has been the potential benefit of the diaries to the relatives of patients. Meta-analyzes of quantitative studies looking at the impact on the psychological wellbeing of relatives have not consistently found an effect of the diaries, even though qualitative studies suggest that relatives find the diaries to be a useful coping strategy. OBJECTIVES: To evaluate and synthesise qualitative studies looking at the experience of relatives writing in ICU diaries. DESIGN: A systematic review and qualitative synthesis. DATA SOURCES: A structured search using CINAHL, MEDLINE, PsycInfo, Cochrane Central Register of Controlled Trials (CENTRAL), PTSDHubs and Published International Literature Web of Science Conference Proceedings Citation Index - Science and Social Science and Humanities was conducted. REVIEW METHODS: All studies published at any time that included qualitative data (including mixed methods studies) about the perceptions of relatives using ICU patient diaries were included. Themes and narrative statements were extracted from included articles and synthesised. Articles were quality assessed using the Critical Appraisal Skills Programme (CASP) qualitative checklist and Mixed Methods Appraisal Tool (MMAT). RESULTS: Sixteen studies were included in the review, thirteen qualitative and three mixed methods articles. The themes identified were: 1. Coping (subthemes: 1.1. Emotion-Focused Coping and 1.2. Problem-Focused Coping) 2. Connection (subthemes: 2.1 Method of Communication and 2.2 Developing and maintaining relationships) 3. Developing a Narrative (subthemes 3.1 Understanding 3.2 Shaping the story 3.3 Remembering). CONCLUSIONS: Relatives use the diaries in a variety of ways including as a means of coping, a way of staying connected, as a tool to understand and develop a narrative about the experience. These findings link the use of ICU diaries with literature on written emotional exposure, post-traumatic growth and meaning making. The relationship between a relative's use of the ICU diary, coping strategies and/or post-traumatic growth could be a focus for future quantitative trials. PROSPERO protocol number CRD42020165869.

Social media use and perceptions of physical health.

Social networking activity is becoming more endemic in society and yet little is known about how the social comparison, occurring when we use these sites, affects perceptions of health. This study sought to determine in what way people who use Facebook (FB) interpret the comparison information they see on FB and whether this was associated with perceptions of physical health. Determining this association is important given the positive association between well-being, quality of life and physical health. Using a cross-sectional design, participants completed an electronic questionnaire measuring FB use, FB social comparison, self-esteem, depression, anxiety, life satisfaction and physical health. The data was analysed using Hierarchical Linear Regression to determine the association of social comparison on perceptions of physical health after controlling for other influencing factors. The results showed that participants were indeed socially comparing via FB. More positive upward comparison was reported, followed closely by positive downward and negative upward, with negative downward comparison perceived least. Analysis showed physical symptoms were associated with gender, anxiety, depression, FB use and positively interpreted upward comparison. Those who agreed more with the positively interpreted social comparison statements and who engaged more with FB also perceived more physical symptoms. These results showed that the perception of symptoms still occurred despite the positive comparison. These results have implications for perceptions of well-being for general users of FB and for vulnerable populations where more social comparison may occur.

Assessing Stigma, Disclosure Regret and Posttraumatic Growth in People Living with HIV.

Posttraumatic growth after a diagnosis of HIV is positively associated with adjustment, yet stigma and disclosure regret are negatively associated with adjustment. Research into whether posttraumatic growth is experienced while perceiving stigma and disclosure regret is still growing. This study aimed to determine whether posttraumatic growth maintains a positive relation with life satisfaction after controlling for disclosure regret and perceived stigma. Using a cross-sectional design, a questionnaire measuring life satisfaction, health status, depression, posttraumatic growth, disease severity, perceived stigma, disclosure regret, and demographical information was completed by 73 people living with HIV (PLWH). Results showed that all participants had disclosed to at least one person. Regression results showed that after controlling for other variables, including stigma and disclosure regret, posttraumatic growth was positively associated with life satisfaction. The importance of the relation of posttraumatic growth with subjective measures of adjustment may be important for interventions aimed at supporting PLWH.

The experience of infertility treatment: the male perspective.

Current research surrounding infertility is focused primarily on women alone, thus removing men from the fertility equation. However, alternative research has indicated that, although men also experience infertility, there is a paucity of research on men. Therefore, very little is understood about the experiences of infertility from the male perspective. This study adopted a qualitative approach in an attempt to explore the infertility experience from the perspective of men. Fifteen men who had experienced infertility were interviewed to explore their experiences. Interpretative phenomenological analysis was used to analyse the data. Five superordinate themes were developed, and these included: (1) the influence of society on infertility; (2) feeling unacknowledged; (3) natural verses assisted conception; (4) emotional reactions; and (5) improving the infertility experience. The findings of this research indicated that men experience infertility as a mentally, physically and socially demanding condition. Comparisons to previous research have been made, and future research is proposed.

Exploring positive adjustment in people with spinal cord injury.

This study explored adjustment in people with spinal cord injury; data from four focus groups are presented. Thematic analysis revealed four themes, managing goals and expectations, comparison with others, feeling useful and acceptance, showing participants positively engaged in life, positively interpreted social comparison information and set realistic goals and expectations. These positive strategies show support for adjustment theories, such as the Cognitive Adaptation Theory, the Control Process Theory and Response Shift Theory. These results also provide insight into the adjustment process of a person with spinal cord injury and may be useful in tailoring support during rehabilitation.

Exploring positive adjustment in HIV positive African women living in the UK.

Research into living with HIV/AIDS has to date mainly focused on quality of life and there is little on the adjustment process for this group. The numbers of African women living with HIV/AIDS in the UK is growing and yet little is known about the adjustment experience for these women. This study explored aspects of positive adjustment to living with HIV/AIDS among a sample of African women living in London, UK. Transcripts of semi-structured interviews with 12 women were analysed using interpretative phenomenological analysis (IPA). Two superordinate themes emerged inductively from the data: positive changes in coping (subthemes: positive interpretation of their situation and positive behavioural changes) and positive growth since the HIV diagnosis (subthemes: changes in the value of life and, changes in goals and opportunities). While these women acknowledged the negative impact of living with HIV/AIDS, all participants mentioned changes in health behaviours to help regain mastery of their lives and comparing with others better-off and worse-off was used to enhance self-esteem and view their situation positively. The data show evidence for Taylor's Cognitive Adaptation Theory.

Emotional well-being and adjustment to vision loss in later life: a meta-synthesis of qualitative studies.

PURPOSE: To review perceived emotional well-being in older people with visual impairment and perceived factors that inhibit/facilitate psychosocial adjustment to vision loss. METHOD: The databases of MEDLINE, EMBASE, PsycINFO and CINAHL were searched for studies published from January 1980 to December 2010, which recruited older people with irreversible vision loss, and used qualitative methods for both data collection and analysis. Results sections of the papers were synthesised using a thematic-style analysis to identify the emergent and dominant themes. RESULTS: Seventeen qualitative papers were included in the review, and five main themes emerged from the synthesis: 1) the trauma of an ophthalmic diagnosis, 2) impact of vision loss on daily life, 3) negative impact of visual impairment on psychosocial well-being, 4) factors that inhibit social well-being, and 5) factors that facilitate psychological well-being. We found the response shift model useful for explaining our synthesis. CONCLUSIONS: Acquired visual impairment can have a significant impact on older people's well-being and make psychosocial adjustment to the condition a major challenge. Acceptance of the condition and a positive attitude facilitate successful psychosocial adjustment to vision loss as well as social support from family, friends and peers who have successfully adjusted to the condition.

A personalized sensor-controlled microstimulator system for arm rehabilitation poststroke. Part 2: Objective outcomes and patients' perspectives.

OBJECTIVE: To examine the effect of home-based electrical stimulation using closed-loop control of implanted microstimulators on upper limb function and impairment, and subjects' perception of the system. MATERIALS AND METHODS: Six subjects with poststroke hemiparesis, and reduced upper limb function, who had taken part in Phase 1 of the study, were fitted with a personalized closed-loop control system (Phase 2) and used it at home during performance of functional tasks for 12 weeks (Phase 3). Main outcome measures were: Action Research Arm Test (ARAT), Fugl-Meyer upper limb assessment (FMA), and motor control (Tracking Index). Subjects' perception of the system was assessed in a structured interview. RESULTS: Improvement in ARAT (p=0.05), FMA (p=0.02), and Tracking Index (p=0.03) during Phase 3. Five subjects said using the system had changed their lives and improved their function, all performed functional tasks with the system, but external components were inconvenient. CONCLUSIONS: Closed-loop control improved in function. Subjective assessment identified that the external sensors were effective.

The views of people with spinal cord injury about the use of functional electrical stimulation.

Functional electrical stimulation (FES) is a specialist technique that can be applied in several areas of spinal rehabilitation. The aim of the study was to explore views of people with spinal cord injuries (SCI), health care professionals specializing in SCI, and researchers in FES about the current and future use of FES. A qualitative design using eight focus groups lasting 90 to 120 min was carried out throughout the UK. Purposive sampling was used to ensure diversity in age, level of SCI, severity of injury, and experience using FES. Thematic analysis identified five key themes. Decisions to use FES related to concerns over the screening and suitability of FES, ensuring parity between patients, and offering FES at the right stage of rehabilitation. Positive aspects of using FES related to themes regarding "physical improvements" and "doing something active." Barriers to using FES concerned a lack of resources, such as equipment and staff training, and the view that some FES devices were unreliable. This research highlights the importance of understanding the user's needs in the design of FES devices; improving provision, prescription and allocation of FES resources, and the need to consider psychosocial issues related to the initiation and use of FES.

Ambulatory oxygen: why do COPD patients not use their portable systems as prescribed? A qualitative study.

BACKGROUND: Patients with COPD on long term oxygen therapy frequently do not adhere to their prescription, and they frequently do not use their ambulatory oxygen systems as intended. Reasons for this lack of adherence are not known. The aim of this study was to obtain in-depth information about perceptions and use of prescribed ambulatory oxygen systems from patients with COPD to inform ambulatory oxygen design, prescription and management. METHODS: A qualitative design was used, involving semi-structured face-to-face interviews informed by a grounded theory approach. Twenty-seven UK community-dwelling COPD patients using NHS prescribed ambulatory systems were recruited. Ambulatory oxygen systems comprised cylinders weighing 3.4 kg, a shoulder bag and nasal cannulae. RESULTS: Participants reported that they: received no instruction on how to use ambulatory oxygen; were uncertain of the benefits; were afraid the system would run out while they were using it (due to lack of confidence in the cylinder gauge); were embarrassed at being seen with the system in public; and were unable to carry the system because of the cylinder weight. The essential role of carers was also highlighted, as participants with no immediate carers did not use ambulatory oxygen outside the house. CONCLUSIONS: These participants highlighted previously unreported problems that prevented them from using ambulatory oxygen as prescribed. Our novel findings point to: concerns with the lack of specific information provision; the perceived unreliability of the oxygen system; important carer issues surrounding managing and using ambulatory oxygen equipment. All of these issues, as well as previously reported problems with system weight and patient embarrassment, should be addressed to improve adherence to ambulatory oxygen prescription and enhance the physical and social benefits of maintaining mobility in this patient group. Increased user involvement in both system development and service provision planning, could have avoided many of the difficulties highlighted by this study.

Stroke participants' perceptions of robotic and electrical stimulation therapy: a new approach.

PURPOSE: User perceptions are critical, yet often ignored factors in the design and development of rehabilitation technologies. In this article, measures for collection of patient perceptions are developed and applied to a novel upper limb workstation that combines robotic therapy and electrical stimulation (ES). METHOD: Five participants with chronic upper limb hemiplegia post-stroke used a robotic workstation to undertake supported tracking tasks augmented by precisely controlled ES to their triceps muscle. Following a 6 week trial, a purpose designed set of questions was developed and individual interviews were conducted by an independent health psychologist. RESULTS: The simple, quick to administer question set showed that participants had a positive response to the system, and contributed valuable feedback with regard to its usability and effectiveness. Participants want a home-based system targeting their whole arm. CONCLUSION: This article demonstrates the value in assessing user perceptions of a rehabilitation system via a simple question set. While the results of this study have implications for a wider audience, our recommendations are for a qualitative study to develop a generic evaluation tool which could be used across the growing number of devices to provide feedback to enhance future development of any new technology for rehabilitation.

The use of intuition in homeopathic clinical decision making: an interpretative phenomenological study.

While intuition plays a role in clinical decision making within conventional medicine, little is understood about its use in complementary and alternative medicine (CAM). The aim of this qualitative study was to investigate intuition from the perspective of homeopathic practitioners; its' manifestation, how it was recognized, its origins and when it was used within daily clinical practice. Semi-structured interviews were carried out with clinically experienced non-National Health Service (NHS) UK homeopathic practitioners. Interpretative phenomenological analysis was used to analyze the data. Homeopaths reported many similarities with conventional medical practitioner regarding the nature, perceived origin and manifestation of their intuitions in clinical practice. Intuition was used in two key aspects of the consultation: (i) to enhance the practitioner-patient relationship, these were generally trusted; and (ii) intuitions relating to the prescribing decision. Homeopaths were cautious about these latter intuitions, testing any intuitive thoughts through deductive reasoning before accepting them. Their reluctance is not surprising given the consequences for patient care, but we propose this also reflects homeopaths' sensitivity to the academic and medical mistrust of both homeopathy and intuition. This study is the first to explore the use of intuition in decision making in any form of complementary medicine. The similarities with conventional practitioners may provide confidence in validating intuition as a legitimate part of the decision making process for these specific practitioners. Further work is needed to elucidate if these findings reflect intuitive use in clinical practice of other CAM practitioners in both private and NHS (i.e., time limited) settings.

Social comparison within self-help groups: views of parents of children with Duchenne muscular dystrophy.

This study used a qualitative approach to examine the experiences of parents participating as members of the Duchenne Family Support Group (DFSG), with a focus on whether social comparison occurred within this group. Eight parents were interviewed about their experiences of being a member. Thematic analysis was used to identify themes inductively. The study uncovered a wide range of social comparisons, including upward and downward comparisons on illness and coping dimensions, with both positive and negative affects. The results highlighted the complexity of socially comparing within the context of chronic illness, particularly in an illness in which deterioration is inevitable.

Understanding homeopathic decision-making: a qualitative study.

BACKGROUND: Understanding how homeopaths make clinical decisions is important in terms of optimising patient care, yet currently little is understood about this process. Most current literature investigating decision-making has focussed on conventional medicine; to date only two studies, both quantitative, have explored this area, with both studies investigating this in homeopathy. The aim of this qualitative study was to explore how homeopaths make prescribing decisions primarily during their first consultation with a patient. METHOD: In-depth, semistructured, face to face interviews were carried out with 14 private homeopaths working in private practice. Interpretative phenomenological analysis (IPA) was carried out on the data by 3 researchers. FINDINGS: Cognitive processes that homeopaths used in decision-making emerged from the analysis included the use of pattern recognition (P), hypothetico-deductive reasoning (H) and intuition (I), which led to a precise remedy match (R-M). Four themes emerged from the data: three related to the process of making a decision; one theme to those factors that influence this process. These themes fitted into a decision-making model, which we describe: the P.H.I.RM decision-making model. Two further themes emerged, which contributed to the model: the practitioners' awareness of avoiding major bias and the role of the patient practitioner relationship in influencing decision-making. CONCLUSION: The P.H.I.R-M decision-making model describes how homeopathic practitioners' used an evidence-based process to make decisions. This study also contributes more weight to the accumulating evidence that intuition is a valuable component of decision-making for homeopathic practitioners.