Part In Telephone Interviews Research Articles

From fixer to facilitator: an interpretative phenomenological study of diabetes person-centred counselling and empowerment-based education.

The purpose of this study is to explore the professional and personal experiences of multidisciplinary healthcare professionals during and following diabetes counselling and empowerment-based education. Everyone who had participated in a diabetes counselling and empowerment course between 2008-2016 was invited to respond to an online survey and follow-up telephone interview if willing. Interviews were recorded and transcribed verbatim. The research team used interpretative phenomenology to identify core themes from both the survey and telephone interviews and which captured the impact of empowerment-based education. 22 doctors, nurses, dieticians, and psychologists completed an online questionnaire. 10 subsequently took part in telephone interviews. Empowerment-based education changed them from fixers to facilitators. Their transformation included a sense of becoming authentic, 'being the way I want to be' in clinical practice and becoming more self-reflective. This affected them personally as well as reinvigorating them professionally. The participants described a personal and professional journey of transformation that included discovering their person-centred philosophy. They adopted a consultation structure that empowered people with diabetes to care for themselves. It can be speculated that participants' experience of transformation may also guard against professional burnout.

The bidirectional relationship between breastfeeding and mental health

Background/AimsBreastfeeding rates in the UK are among the lowest in the world, despite its well-known benefits to maternal and infant health. The impact of breastfeeding on women's mental health may contribute to this. This study aimed to better understand the bidirectional relationship between breastfeeding and maternal mental health.MethodsWomen aged 20–45 years who had attempted to breastfeed between 2018 and 2019 were recruited. A mixed-methods design encompassed two components; 109 participants completed an online questionnaire and 24 took part in telephone interviews, analysed using a thematic approach.ResultsFive main themes were identified: pressure to breastfeed, provision of information and support, mixed impact on mental health, mental health impacting breastfeeding and attachment.ConclusionsWhile a positive breastfeeding experience can lead to positive wellbeing, women highlighted a pressure to breastfeed that often led to negative wellbeing. Support and information are needed to promote mental health and longer breastfeeding duration, specifically for those mothers experiencing mental health difficulties.

Development and evaluation of a website with patients experiences of multiple sclerosis: a mixed methods study

BackgroundA variety of management options (e.g., disease-modifying therapy, lifestyle interventions, rehabilitation) are available for persons with relapsing-remitting multiple sclerosis (MS). Besides coping with the diagnosis, persons with MS have to make complex decisions, e.g., regarding disease-modifying therapies. In addition to factual information, reports of patient experiences may support other patients in their decision-making. Therefore, we developed a website presenting patient experiences illustrated by video, audio and text files. This study aimed to test the acceptability and usability of a website with patient experiences with MS.MethodsA mixed-methods approach was applied. A total of 69 participants visited the German “Patient Experiences with MS (PExMS)” website and among them, 50 persons with MS and 6 experts completed an online survey. In total, 18 participants took part in telephone interviews or focus groups. Data from the survey were analysed using descriptive statistics. Qualitative data were analysed using thematic analysis.ResultsBoth quantitative and qualitative responses suggest that the PExMS website was viewed positively by patients and experts. 94% of persons with MS agreed that the information was comprehensible and reliable. 54% felt encouraged to share their health problems with others after having studied the website. 74% claimed to use the website if they had to make a decision regarding their health. Qualitative responses deduced from the website fell into 5 key themes: (1) web design, appearance, and functionality, (2) content, (3) usability, (4) satisfaction, and (5) loyalty. The search for persons of similar age and with comparable experiences was a major driving force to navigate the website. The material on the website was perceived as diverse, covering both positive and negative experiences in daily living with MS. All participants greatly appreciated having access to other people’s experiences online and judged the material on the website as particularly helpful in decision-making for disease-modifying therapies.ConclusionsThe findings suggest that the PExMS website might have the potential to be a useful source of audio-visual information for persons with MS. Given the lack of websites available to patients with experiential information, health care professionals may be encouraged to routinely inform patients about this website at regular appointments.

From fixer to facilitator: an interpretative phenomenological study of diabetes person-centred counselling and empowerment education

Background: The purpose of this study is to explore the professional and personal experiences of multidisciplinary healthcare professionals during and following diabetes counselling and empowerment education. Methods: Everyone who had participated in a diabetes counselling and empowerment course between 2008-2016 was invited to respond to an online survey and follow-up telephone interview if willing. Interviews were recorded and transcribed verbatim. The research team used interpretative phenomenology to identify core themes from both the survey and telephone interviews and which captured the impact of empowerment education. Results: 22 doctors, nurses, dieticians, and psychologists completed an online questionnaire. 10 subsequently took part in telephone interviews. Empowerment education changed them from fixers to facilitators. Their transformation included a sense of becoming authentic, ‘being the way I want to be’ in clinical practice and becoming more self-reflective. This affected them personally as well as reinvigorating them professionally. Conclusions: The participants described a personal and professional journey of transformation that included discovering their person-centred philosophy. They adopted a consultation structure that empowered people with diabetes to care for themselves. It can be speculated that participants’ experience of transformation may also guard against professional burnout.

Infection control in the home: a qualitative study exploring perceptions and experiences of adhering to protective behaviours in the home during the COVID-19 pandemic

ObjectivesWe sought to explore people’s experiences and perceptions of implementing infection control behaviours in the home during the COVID-19 pandemic, guided by an online behavioural intervention.DesignInductive qualitative study.SettingUK public during...

“It's been up and down”—perspectives on living through COVID-19 for individuals who experience homelessness: a qualitative study

BackgroundThe UN describes the COVID-19 pandemic as the greatest public health crisis for the current generation. However, individuals who experienced austerity, adversity, and disadvantage prior to the pandemic have been disproportionately affected with every turn the pandemic has taken, from transmission risk to vaccination take-up. One such population is individuals who experience homelessness. As the UK begins to transition to a stage of post-pandemic recovery, it is imperative to understand the perceived impact COVID-19 has had on the day-to-day lives of individuals who experience homelessness, to ensure they are not left behind and recovery planning can be better targeted to their specific needs. MethodsBetween February and May, 2021, 26 individuals (10 women and 16 men) who self-identified as experiencing homelessness within the Newcastle Gateshead area took part in telephone interviews of 20–80 min in length. Participants provided written or verbal informed consent prior to participating. Recruitment took place through existing networks, housing providers, charities, word of mouth, and snowball sampling. Analysis was co-produced with five individuals with lived experience using interpretative phenomenological analysis. NVivo release 1·5 was used to organise quotes. Ethics approval was granted by the Faculty of Medical Sciences Research Ethics Committee, part of Newcastle University's Research Ethics Committee (ref 2034/6698/2020.) FindingsExperiences shared depicted unique stories with commonalities across the findings through five main themes: (1) surreality of day-to-day life—searching for understanding and lost autonomy; (2) an emotional rollercoaster—confronting negative emotions; (3) loneliness is my best friend—learning from being alone; (4) adversity is the only consistency—recognising past and present hardship, violence, and loss; and (5) coping with uncertainty—using drugs, mindfulness, and technology to survive. InterpretationThe pandemic has affected the daily lives of people who experience homelessness in a variety of ways, including personal growth, no change, and regression. This study is limited by its localised recruitment in Newcastle and Gateshead in the UK; however, this local focus and involvement of individuals with lived experience has strengthened the study's implications for policy and practice in the region. Initiatives or policies developed to support post-pandemic recovery should reflect the array of impacts, while giving special recognition to loneliness, adversity, and resiliency among individuals who experience homelessness. FundingNational Institute for Health Research School for Public Health Research.

Process evaluation of the Bridging the Age Gap in Breast Cancer decision support intervention cluster randomised trial

BackgroundThe Bridging the Age Gap in Breast Cancer research programme sought to improve treatment decision-making for older women with breast cancer by developing and testing, in a cluster randomised trial (n = 1339 patients), two decision support interventions (DESIs). Both DESIs were used in the intervention arm and each comprised an online risk prediction model, brief decision aid and information booklet. One DESI supported the decision to have either primary endocrine therapy (PET) or surgery with adjuvant therapies and the second supported the decision to have adjuvant chemotherapy after surgery or not.MethodsSixteen sites were randomly selected to take part in the process evaluation. Multiple methods of data collection were used. Medical Research Council (MRC) guidelines for the evaluation of complex interventions were used.ResultsEighty-two patients, mean age 75.5 (range 70–93), provided data for the process evaluation. Seventy-three interviews were completed with patients. Ten clinicians from six intervention sites took part in telephone interviews. Dose: Ninety-one members of staff in the intervention arm received intervention training. Reach: The online tool was accessed on 324 occasions by 27 clinicians. Reasons for non-use of the online tool were commonly that the patient had already made a decision or that there was no online access in the clinic. Of the 32 women for whom there were data available, fifteen from the intervention arm and six from the usual care arm were offered a choice of treatment. Fidelity: Clinicians used the online tool in different ways, with some using it during the consultation and others checking the online survival estimates before the consultation. Adaptation: There was evidence of adaptation when using the DESIs. A lack of infrastructure, e.g. internet access, was a barrier to the use of the online tool. The brief decision aid was rarely used. Mediators: Shared decision-making: Most patients felt able to contribute to decision-making and expressed high levels of satisfaction with the process. Participants’ responses to intervention: Six patients reported the DESIs to be very useful, one somewhat useful and two moderately useful.ConclusionsClinicians who participated were mainly supportive of the interventions and had attempted some adaptations to make the interventions applicable, but there were practical and engagement barriers that led to sub-optimal adoption in routine practice.Trial registrationISRCTN46099296. Registered on 11 August 2016—retrospectively registered

Diet and nutrition in patients who have received pelvic radiotherapy: A mixed-methods study to explore dietary habits, nutritional awareness, and experiences of nutritional care

ObjectivesIndividuals who have survived cancer may benefit from dietary modifications to improve quality of life and future health outcomes. The aim of this study was to explore dietary habits and experiences of nutritional support in patients with a cancer diagnosis who have received radiotherapy to the pelvic area. MethodsA mixed-methods approach was used. Individuals diagnosed with a pelvic cancer (anal, bladder, rectal, and cancers of the reproductive organs), either undergoing or having completed pelvic radiotherapy 6 to 24 mo previously, were invited to participate in a postal survey. A purposive subsample was also invited to take part in telephone interviews. Thematic analysis of interview data was undertaken and integrated with data from quantitative analysis. ResultsThe survey was completed by 254 (38%) respondents. Two-thirds of respondents (170) reported dietary changes since diagnosis; most notable changes were reduction of sugary foods (48%) and alcohol (41%). Receipt of support from the health care team was significantly associated with dietary change (odds ratio, 3.26; 95% confidence interval, 1.58–6.75); however, only 43% (108) had received dietary support from the health care team. Of the respondents, 68% (171) said they would like to receive additional dietary support. The effect of the condition on diet was highlighted in the theme “Impact of diagnosis and treatments on dietary choices.” Self-management of disease was influenced by personal resources, social resources, comorbidities and disabilities, influence of work, regaining normality, and barriers to dietary changes. ConclusionLack of routine provision of nutritional care to patients after a cancer diagnosis and patient interest in this area highlighted unmet needs in managing diet-related problems and leading a healthy future lifestyle.

Lessons from a review of physiotherapy and psychological rehabilitation received during ICU stay and beyond to inform the development of an ICU follow clinic.

Critical illness can have a long-term impact. A service evaluation was conducted in a hospital in the south west of Britain with an adult inter-connected general, surgical and neurological intensive care unit (ICU). The aim of the service evaluation was to generate knowledge on experiences of psychological and physical rehabilitation in intensive care, on other hospital wards and at home to inform the development of an Intensive Care follow up clinic. Data was collected from two sources. A week of ICU discharges was randomly selected, and a sample of 30 patients generated. All were sent information sheets and consent forms and offered telephone appointments. 12 participants took part in telephone interviews. The second source of participants was the ICU Expert by Experience group. Informed consent was gained with eight participants taking part. The data was analysed using thematic analysis, employing initial open coding to build a framework of emergent themes. A research group was formed to facilitate cross coding of extracts. The analysis identified three overarching themes: sense making difficulties; rehabilitation context; and sense of self. The theme of sense making difficulties had sub-themes of memory gaps, delirium, lack of information and anxiety. The theme of rehabilitation context had sub-themes of ICU environment, transitions, isolation and abandonment and valued support. the process of sense making can be difficult, is filtered through contextual factors, and may influence sense of self. The results have been used to inform the development of an ICU follow up clinic.

High School Students' Preferences and Design Recommendations for a Mobile Phone-Based Intervention to Improve Psychological Well-Being: Mixed Methods Study.

BackgroundYoung adults’ mental health is characterized by relatively high rates of stress and anxiety and low levels of help-seeking behavior. Mobile health (mHealth) interventions could offer a cost-effective and readily available avenue to provide personalized support to young adults. More research needs to be directed at the development of mHealth interventions targeting youths specifically, as well as at determining how to reach young people and how to effectively intervene to improve psychological well-being.ObjectiveThe objective was to gather perceptions from high school students to inform the development of a prototype mHealth intervention aiming to promote psychological well-being.MethodsA mixed methods design was used to (1) investigate high school students’ perceptions about stress and its consequences in daily life, as well as their ability to cope with stress, and (2) explore their preferences and design recommendations for an mHealth intervention to improve psychological well-being. Students from two high schools in the southeast of Sweden were invited to take part in the study. Recruitment of high school students was completed over a 6-week period, between October 25 and December 7, 2018. Recruitment entailed inviting students to complete a stress test (ie, screening and feedback) on their mobile phones. After completing the stress test, all participants were invited to complete a follow-up questionnaire and take part in telephone interviews.ResultsA total of 149 high school students completed the stress test, of which 68 completed the questionnaire. There were 67 free-text comments distributed across the items. The majority of participants (55/68, 81%) stated that they coped with stress better or in the same way after engaging in the stress test, due to time management, dialogue with others, and self-refection. A total of 4 out of 68 participants (6%)—3 female students (75%) and 1 male student (25%)—took part in telephone interviews. Three main themes were identified from the interview data: perceptions about stress, design features, and intervention features.ConclusionsStress was described by the students as a condition caused by high demands set by oneself and the social environment that impacted their physical health, personal relationships, school performance, and emotional well-being. Participants claimed that mHealth interventions need to be clearly tailored to a young age group, be evidence based, and offer varied types of support, such as information about stress, exercises to help organize tasks, self-assessment, coping tools, and recommendations of other useful websites, literature, blogs, self-help books, or role models. Mobile phones seemed to be a feasible and acceptable platform for the delivery of an intervention.

Alcohol use and breast cancer risk: A qualitative study of women's perspectives to inform the development of a preventative intervention in breast clinics.

ObjectiveThis study aimed to explore women's views about breast cancer risk and alcohol use, to inform the design of a prototype for an intervention in breast clinics about alcohol as a modifiable risk factor for breast cancer.MethodsWomen recruited in NHS breast screening and symptomatic clinics in Southampton, UK, were invited to take part in semi‐structured telephone interviews or a focus group to discuss their perspectives of breast cancer risk, alcohol consumption and their information needs about these topics. Data were analysed thematically. Twenty‐eight women took part in telephone interviews, and 16 attended one of three focus groups.ResultsWhile most women reported a personal responsibility for their health and were interested in advice about modifiable risk factors, few without (or prior to) experience of breast symptoms independently sought information. Many considered alcohol advice irrelevant as the association with breast cancer was largely unknown, and participants did not consider their drinking to be problematic. Women reported trusting information from health organisations like the NHS, but advice needs to be sensitive and non‐blaming.ConclusionNHS breast screening and symptomatic clinics offer a “teachable moment” to engage women with context‐specific advice about alcohol and cancer risk that, if targeted correctly, may assist them in making informed lifestyle choices.

Validation of the ICD-11 beta draft in hand surgery

The practice of hand surgery is characterised by the surgical and conservative treatment of patients with a broad range of single and multiple hand injuries, many of them complex, as well as hand diseases. Thus far, the coding of especially complex hand injuries using the International Statistical Classification of Diseases and Related Health Problems, 10th revision (German Modification) (ICD-10-GM) has often been a challenge for the persons responsible for coding. To ensure an exact, unambiguous and reliable coding of patient cases, the mapping of these cases in the 11th revision of the ICD is an inevitable requirement. The aim of this study was to examine the representation of hand injuries and diseases in the ICD-11 beta draft. We performed a case-oriented validation study. Based on real-life patient cases, we developed two types of case scenarios (short diagnostic statements: "lines", and more comprehensive case descriptions: "cases"), which were coded using the ICD-11 beta draft. To gain insight into participants' experiences with the coding process, additional telephone interviews were carried out. Twenty-three hand surgeons from nine participating institutions coded a total of 315 case scenarios using the ICD-11 beta draft - 210 lines and 105 cases. An inter-rater reliability (Krippendorff's alpha) of 0.67 for both lines and cases indicated substantial agreement between the coding physicians. Study participants reported difficulties with coding in approximately one third of case scenarios (lines: 27 % and cases: 35 %). Nine physicians additionally took part in telephone interviews. Problems with coding using the ICD-11 beta draft as well as specific suggestions for changes were collected, verified by a working group and complemented by further proposals. The results of this study entailed important adaptations of the ICD-11 in the field of hand surgery and will in future enable an unambiguous and specific coding of hand injuries and diseases, especially multiple injuries. The obtained inter-rater reliability for the ICD-11 beta draft is satisfactory. Specific problems as well as proposals for changes supported the finalisation of the ICD-11.

Use of cross-sector apprenticeships in pharmacy: is it a sustainable quality education model for pharmacy assistants?

To establish whether undertaking cross-sector pharmacy apprenticeship training to become a pharmacy assistant equally split across the two main pharmacy sectors improves training experience and cross-sector understanding. A mixed method approach was utilised to explore the experiences of 10 pharmacy apprentices, their employers and education provider. Questionnaires were used to explore apprentices' experiences and views following each 6-month placement. Seven pharmacy employers and the education provider were invited to take part in telephone interviews. Questionnaires were analysed using simple frequencies; qualitative data were analysed thematically. Ten apprentices were recruited, and nine apprentices returned questionnaires from at least one placement. Three hospital-based employers, four community employers and one education provider were interviewed. All participants had found the pilot positive and the cross-sector training to have been a useful experience. Employers noted that the pilot provided the apprentice with valuable insight into the patient's journey and the opportunity to share learning across sectors. Employers also commented that more information regarding the nature of the training would have been useful to help better structure the placement for the apprentice. This paper explores the benefits and challenges of employing a pharmacy apprentice and utilising a novel cross-sector training model. Findings have potential relevance to the training of other pharmacy staff, including pharmacy technicians and pharmacists. They offer early insights into the potential value of pharmacy apprenticeships for training pharmacy assistants, particularly if these are set up across the two main sectors hospital and community pharmacy.

‘Femme it Up or Dress it Down’: Appearance and Bisexual Women in Monogamous Relationships

This article reports on findings from a qualitative study into the lived experience of bisexual women in monogamous relationships. Nineteen self-identified bisexual women from across the United Kingdom, who were either in a monogamous relationship or desired to be in one, were explored. Participants completed diaries and took part in telephone interviews. The data was analyzed using Template Analysis that identified themes from the data set. It appeared that women in different-gender relationships choose appearance markers that could be classed as lesbian orientated in a bid to illuminate their bisexuality. Women in same-gender relationships were more likely to opt for feminine appearance signifiers in a bid to avoid being identified as a lesbian based solely on their appearance. The study suggests that the gender of participants’ partners matters with regards to their appearance decisions. However, despite the apparent influence of their partner’s gender, bisexual women demonstrated a degree of flexibility and fluidity in their appearance choices.

Frequency and prognostic factors of olfactory dysfunction after traumatic brain injury

ABSTRACTObjective: To assess the frequency and factors associated with posttraumatic olfactory dysfunction, including anosmia, in a follow-up of patients with moderate and severe traumatic brain injury (TBI).Methods: The setting was a cross-sectional study of patients that were consecutively included in the Trondheim TBI database, comprising injury-related variables. Eligible participants 18–65 years were contacted 9–104 months post trauma and asked olfactory-related questions. Those reporting possible posttraumatic change of olfaction were invited to further examination using the Sniffin’ Sticks panel.Results: Of 211 eligible participants, 182 (86.3%) took part in telephone interviews and 25(13.7%) were diagnosed with olfactory dysfunction. 60% of these, or 8.2% of all participants, had anosmia. In age-adjusted logistic regression analyses, fall (OR 2.5, 95% CI 1.0–6.2), skull base fracture (OR 2.9, 95% CI 1.2–7.1) and cortical contusion(s) (OR 6.0, 95% CI 2.1–17.3) were associated with olfactory dysfunction. In an analysis of anosmia, fall (OR 3.4, 95% CI 1.1–10.6) and cortical contusion(s) (OR 19.7, 95% CI 2.5-156.0) were associated with the outcome.Conclusion: Of the study participants 13.7% had olfactory dysfunction and 8.2% had anosmia. Higher age, trauma caused by fall and CT displaying skull base fracture and cortical contusion(s) were related to olfactory dysfunction.

Personal agency in women's recovery from depression: The impact of antidepressants and women's personal efforts

BackgroundWomen are twice as likely to experience depression and use antidepressants as men. Personal agency protects against depression; however, social factors contribute to lower levels of agency in women.AimsThis study examines women's experiences of using antidepressant treatment along with the other activities and practices they engage in to support their recovery from depression. It aims to understand how these experiences promote or diminish women's sense of agency in regard to their recovery.MethodFifty women took part in telephone interviews focusing on experiences of antidepressants as well as personal efforts to recover. A thematic analysis examined the agency‐promoting and agency‐diminishing experiences of using antidepressant treatment and engaging in other activities.ResultsAntidepressants promoted agency when they gave women relief from depressive symptoms, allowing women to become more proactive in recovery. Women engaged in a range of activities they believed assisted recovery and hence enhanced agency. These included exercise, gaining social support, and engaging in therapy. Some, however, had shifted to long‐term antidepressant use. Failed attempts to discontinue due to severe withdrawal symptoms, fear of a relapse, and the biochemical model of depression created a sense of dependence on antidepressants and thereby diminished personal agency in relation to recovery.ConclusionsAntidepressants can support women to become agential in their recovery. However, long‐term use signifies greater dependency on antidepressants, and personal agency is seen as insufficient. The fear of withdrawal symptoms and the biochemical model undermine women's sense of personal agency in relation to recovery.

Oral health behaviours of parents and young children in a practice-based caries prevention trial in Northern Ireland.

The NICPIP trial evaluated the costs and effects of a caries prevention intervention delivered to 2- to 3-year-old children attending dental practices in Northern Ireland. This supplementary study explored the oral health behaviours of children and their parents to help understand the reasons for the trial's findings. A mixed methods study that included a questionnaire completed by all parents (n=1058) at the time they brought their child for the NICPIP final clinical assessment. The questionnaire collected data on frequency of toothbrushing and sugar consumption. Questionnaire data were analysed by trial group and caries status. Parents of trial participants (n=42) were invited to take part in telephone interviews. Parents were purposively sampled according to trial group and whether or not their child developed caries. The interviews explored how and why oral health behaviours happened. Interview data were audio-recorded, transcribed verbatim and analysed thematically. The questionnaire data indicated that toothbrushing and between-meal sugar snacking were common in the majority of children. The children of parents who automatically reminded their child to brush their teeth were more likely to remain caries-free (Odds Ratio 1.24; 95% CI 1.08, 1.41; P=.002). Frequency of sweet drink consumption was associated with the child developing caries (Odds Ratio 0.88; 95% CI 0.79, 0.98; P=.021). The interview data showed that parents had positive attitudes towards brushing both in terms of perceived importance and expected outcomes. Attitudes towards sugar snacking were more complex, with parents reporting difficulties in controlling this behaviour. Sugar was described as being something that was "ever present" in children's lives. Toothbrushing was widely adopted from a young age, but between-meal sugar consumption was highly prevalent. The results suggest that effective family-level and population-level interventions are needed to reduce sugar consumption if substantial improvements in caries prevention are to be achieved.

Deconstructing Decisions to Initiate, Maintain, or Discontinue Adjuvant Endocrine Therapy in Breast Cancer Survivors: A Mixed-Methods Study

Adjuvant endocrine therapy (AET) has been shown to improve survival in hormone receptor-positive breast cancer survivors, but as many as half do not complete recommended treatment. Management of medication-related side effects and engagement with providers are two potentially modifiable factors, but their associations with adherence are not well understood. The aims were to build on survey results to qualitatively explore survivors' experiences with prescribed AET to (a) describe appraisal and management of AET side effects and (b) deconstruct decisions to initiate, discontinue, or maintain AET. . The authors used a mixed-methods explanatory sequence research design with a qualitative emphasis. . Survivors were recruited from a clinical cancer registry maintained at the University of Texas Southwestern Medical Center, which includes the Harold C. Simmons Comprehensive Cancer Center (National Cancer Institute-designated), in Dallas. . 452 survivors completed a survey, and 30 took part in telephone interviews. . Qualitative methods were used in which the authors recorded and transcribed interviews for analysis and used open coding to reduce data into themes. . Among adherent survivors, the themes of tolerance of side effects and perseverance were strong. Nonadherent survivors expressed more difficulty managing side effects and perceived fewer benefits when side effects were bothersome. The most common side effects mentioned by all survivors were menopausal symptoms and joint pain; less common side effects were cognitive decline and cardiac distress. Some sought advice from their oncology team. Nonadherent survivors appeared initially motivated to maintain AET but identified a tolerance limit for side effects after which a provider's recommendation was less influential in their decision to maintain or discontinue AET. . This study elucidated adherence as a complex continuum of behaviors, appraisals, and decision points. These insights may be particularly useful in counseling survivors taking AET and promoting timely delivery of clinical interventions to enhance adherence. . Nurses should be involved in the planning and implementation of clinical interventions to manage side effects and other barriers to AET adherence.

A qualitative study looking at informed choice in the context of non-invasive prenatal testing for aneuploidy.

ObjectiveTo explore women's attitudes towards non‐invasive prenatal testing (NIPT) and determine factors influencing their decisions around uptake of NIPT.MethodWe conducted qualitative interviews to assess knowledge, attitude and deliberation amongst women offered NIPT in a public health service. In total, 45 women took part in telephone interviews (79% participation rate).ResultsMost women could recount the key aspects of NIPT discussed during pre‐test counselling but had variable knowledge about Down syndrome. Analysis of women's attitudes towards undergoing NIPT revealed three dominant factors they considered when reflecting on the test: (1) how NIPT compared with alternative testing options, (2) reflections on coping and (3) moral or religious values. Exploring the deliberative process revealed the different paths women take when making decisions. For some, it was an extension of the decision to have Down syndrome screening; some considered it early on following the booking‐in appointment; others made step‐wise decisions about NIPT when it became relevant to them.ConclusionOur findings support the importance of personalised counselling, whereby women and their partners have the opportunity to reflect on the implications of the test results in the context of their own lives and values. Our data highlight the influence of personal circumstances on decision‐making. © 2016 The Authors. Prenatal Diagnosis published by John Wiley & Sons, Ltd.

Abstracts of Papers Presented at the Health Services Research & Pharmacy Practice Conference, 7-8 April 2016, University of Reading, UK.

To explore the views of pharmacy and rheumatology stakeholders about system-related barriers to medicines optimisation activities with young people with long-term conditions. A three-phase consensus-building study comprising (1) focus groups with community and hospital pharmacists; (2) semi-structured telephone interviews with lay and professional adolescent rheumatology stakeholders and pharmacy policymakers, and (3) multidisciplinary discussion groups with community and hospital pharmacists and rheumatology staff. Qualitative verbatim transcripts from phases 1 and 2 were subjected to framework analysis. Themes from phase 1 underpinned a briefing for phase 2 interviewees. Themes from phases 1 and 2 generated elements of good pharmacy practice and current/future pharmacy roles for ranking in phase 3. Results from phase 3 prioritisation and ranking exercises were captured on self-completion data collection forms, entered into an Excel spreadsheet and subjected to descriptive statistical analysis. Institutional ethical approval was given by Aston University Health and Life Sciences Research Ethics Committee. Four focus groups were conducted with 18 pharmacists across England, Scotland and Wales (7 hospital, 10 community and 1 community/public health). Fifteen stakeholders took part in telephone interviews (3 pharmacist commissioners; 2 pharmacist policymakers; 2 pharmacy staff members (1 community and 1 hospital); 4 rheumatologists; 1 specialist nurse, and 3 lay juvenile arthritis advocates). Twenty-five participants took part in three discussion groups in adolescent rheumatology centres across England and Scotland (9 community pharmacists; 4 hospital pharmacists; 6 rheumatologists; 5 specialist nurses, and 1 physiotherapist). In all phases of the study, system-level issues were acknowledged as barriers to more engagement with young people and families. Community pharmacists in the focus groups reported that opportunities for engaging with young people were low if parents collected prescriptions alone, which was agreed by other stakeholders. Moreover, institutional/company prescription collection policies – an activity largely disallowed for a young person under 16 without an accompanying parent - were identified by hospital and community pharmacists as barriers to open discussion and engagement. Few community pharmacists reported using Medicines Use Review (England/Wales) or Chronic Medication Service (Scotland) as a medicines optimisation activity with young people; many were unsure about consent procedures. Despite these limitations, rheumatology stakeholders ranked highly the potential of pharmacists empowering young people with general health care skills, such as repeat prescription ordering. The pharmacy profession lacks vision for its role in the care of young people with long-term conditions. Pharmacists and rheumatology stakeholders identified system-level barriers to more engagement with young people who take medicines regularly. We acknowledge that the modest number of participants may have had a specific interest and thus bias for the topic, but this underscores their frank admission of the challenges. Professional guidance and policy, practice frameworks and institutional/company policies must promote flexibility for pharmacy staff to recognise and empower young people who are able to give consent and take responsibility for medicines activities. This will increase mutual confidence and trust, and foster pharmacy’s role in teaching general health care skills. In this way, pharmacists will be able to build long-term relationships with young people and families.