Exploring the experiences of adults with microtia: A qualitative study

Objective: Microtia is a medically complex condition, with the option of surgery to address hearing and reconstruct the ear. The current study explored adults’ experiences of microtia, with a particular focus on the psychosocial impact and experiences of ear reconstruction. The ultimate aim was to identify areas for support and future research that could improve patient care. Design: Fifteen adults (12 females) aged between 20 and 62 years took part in semi-structured interviews. Interviews were audio-recorded, transcribed verbatim, and analyzed using inductive thematic analysis. Results: Three main themes were identified in the data: microtia as an invisible difference, surgery as a welcome opportunity, and living well with microtia. Participants had incorporated microtia into their self-concept and did not report a lasting negative impact on their lives. However, some psychosocial challenges were reported, including anxiety about showing their ears (even after reconstruction), disclosing their diagnosis to romantic partners, surgical decision-making, and feeling unsupported in the work environment. Conclusion: Individuals with microtia may benefit from psychosocial interventions to increase confidence, access to support for treatment decision-making, and guidance around disclosing microtia to employers

Developing young person’s Face IT: Online psychosocial support for adolescents struggling with conditions or injuries affecting their appearance

© The Author(s) 2015. A participatory action approach with potential users and clinical experts was employed to design and evaluate the acceptability of young person’s Face IT (YP Face IT), an online intervention incorporating cognitive behavioural therapy and social skills training for adolescents with appearance-related anxiety as a result of a visible difference. Workshops with adolescents and clinicians informed a prototype YP Face IT which underwent a usability analysis by 28 multidisciplinary health professionals and 18 adolescents, before 10 adolescents completed it at home. Acceptability data obtained online and via interview were analysed using content analysis. Participants found YP Face IT acceptable and believed it would provide much needed and easy access to psychosocial support. They requested that it should be made widely available either as a self-management tool requiring minimal supervision from a health professional or to compliment therapist-led care

Towards improved psychological outcomes for survivors of burn injuries

Editoria

Parent-perceived isolation and barriers to psychosocial support: A qualitative study to investigate how peer support might help parents of burn-injured children

Introduction: Burn injuries can be traumatic and distressing for the affected child and family, with a prolonged period of recovery. This research explores parents’ experiences of support following their child’s injury and their thoughts on peer support specifically.Methods: Thirteen semi-structured interviews were conducted with parents/caregivers, a mean of three years after their child’s injury, either face-to-face or remotely. Responses were analysed using thematic analysis.Results: Analysis produced four themes and 11 sub-themes. These described parents’ experiences of loss, change, isolation and access to psychosocial support. This paper focuses on themes of isolation and parents’ access to psychosocial support.Discussion: Findings indicate that parents access psychosocial support following their child’s injury and often find it helpful; however, there is a prevailing sense of isolation. Parents often seek information online and find that this is lacking. Many parents reported that peer support would be valuable to them, particularly the sharing of experiential knowledge.Conclusion: An online resource may be beneficial for parents, but further research is needed to confirm the exploratory data gained to date, ensuring that any resource developed would meet the identified needs of parents

Assessing the effectiveness of interventions to support patient decision making about breast reconstruction: A systematic review

© 2018 Elsevier Ltd Background: Decision making about breast reconstruction (BR) following a diagnosis of breast cancer, Ductal Carcinoma in Situ (DCIS), or to reduce future breast cancer risk, is difficult and complex. This paper systematically reviews interventions aiming to support patients facing the option of BR, and assesses their effectiveness in improving a range of patient outcomes. Methods: Ten databases were searched for articles published up to October 2017 that evaluated interventions to support patient decision making about BR within controlled trials. All included studies were assessed for methodological quality. Descriptive analyses of patient outcomes within included studies were performed. Results: The search yielded 3291 articles. Eight studies met the inclusion criteria resulting in the evaluation of seven distinct interventions (n = 1212). Six studies were assessed to be of weak methodological quality, with one of moderate and one of strong quality. Three out of five interventions demonstrated a reduction in decisional conflict (ds = 0.26–0.69) and two out of three interventions resulted in reductions in decisional regret (ds = 0.27–3.69) at various time points. Treatment choice was altered in two of five studies. There were no changes in patient-reported anxiety levels, whilst the impact on depression was mixed. In all studies which reported on it, improvements in patient satisfaction and involvement in decision making were found. Conclusions: Few interventions are currently available. Whilst some findings are encouraging, improvements on patient outcomes are mixed. Further research should focus on the development and evaluation of effective interventions

Double-Stranded RNA Attenuates the Barrier Function of Human Pulmonary Artery Endothelial Cells

Circulating RNA may result from excessive cell damage or acute viral infection and can interact with vascular endothelial cells. Despite the obvious clinical implications associated with the presence of circulating RNA, its pathological effects on endothelial cells and the governing molecular mechanisms are still not fully elucidated. We analyzed the effects of double stranded RNA on primary human pulmonary artery endothelial cells (hPAECs). The effect of natural and synthetic double-stranded RNA (dsRNA) on hPAECs was investigated using trans-endothelial electric resistance, molecule trafficking, calcium (Ca2+) homeostasis, gene expression and proliferation studies. Furthermore, the morphology and mechanical changes of the cells caused by synthetic dsRNA was followed by in-situ atomic force microscopy, by vascular-endothelial cadherin and F-actin staining. Our results indicated that exposure of hPAECs to synthetic dsRNA led to functional deficits. This was reflected by morphological and mechanical changes and an increase in the permeability of the endothelial monolayer. hPAECs treated with synthetic dsRNA accumulated in the G1 phase of the cell cycle. Additionally, the proliferation rate of the cells in the presence of synthetic dsRNA was significantly decreased. Furthermore, we found that natural and synthetic dsRNA modulated Ca2+ signaling in hPAECs by inhibiting the sarco-endoplasmic Ca2+-ATPase (SERCA) which is involved in the regulation of the intracellular Ca2+ homeostasis and thus cell growth. Even upon synthetic dsRNA stimulation silencing of SERCA3 preserved the endothelial monolayer integrity. Our data identify novel mechanisms by which dsRNA can disrupt endothelial barrier function and these may be relevant in inflammatory processes

The psychosocial impact of breast cancer diagnosis and treatment amongst Black, South Asian and White women: Do differences exist between ethnic groups?

Breast cancer is the most commonly diagnosed cancer in females, affecting women of all ethnic groups. Until now, very little research has captured the psychosocial impact of the disease amongst Black and Minority Ethnic (BME) women, and that which has been conducted has been restricted to English-speaking participants. The aim of this qualitative study was to explore the experiences of five Gujarati-speaking Indian women with regard to their breast cancer diagnosis and treatment; all five had Limited English Proficiency (LEP) and lived in the UK. Individual semi-structured interviews were conducted in Gujarati, with the assistance of an interpreter. Interpretative Phenomenological Analysis (IPA) of the data revealed 3 key themes: making sense of the cancer, importance of support and body image concerns. The findings show that these women’s experiences were influenced by culturally specific concerns, especially in relation to knowledge of breast cancer and language barriers. This study has implications for healthcare professionals in terms of providing culturally competent care and support to BME women with LEP

Evaluation of the current knowledge limitations in breast cancer research: a gap analysis

BACKGROUND A gap analysis was conducted to determine which areas of breast cancer research, if targeted by researchers and funding bodies, could produce the greatest impact on patients. METHODS Fifty-six Breast Cancer Campaign grant holders and prominent UK breast cancer researchers participated in a gap analysis of current breast cancer research. Before, during and following the meeting, groups in seven key research areas participated in cycles of presentation, literature review and discussion. Summary papers were prepared by each group and collated into this position paper highlighting the research gaps, with recommendations for action. RESULTS Gaps were identified in all seven themes. General barriers to progress were lack of financial and practical resources, and poor collaboration between disciplines. Critical gaps in each theme included: (1) genetics (knowledge of genetic changes, their effects and interactions); (2) initiation of breast cancer (how developmental signalling pathways cause ductal elongation and branching at the cellular level and influence stem cell dynamics, and how their disruption initiates tumour formation); (3) progression of breast cancer (deciphering the intracellular and extracellular regulators of early progression, tumour growth, angiogenesis and metastasis); (4) therapies and targets (understanding who develops advanced disease); (5) disease markers (incorporating intelligent trial design into all studies to ensure new treatments are tested in patient groups stratified using biomarkers); (6) prevention (strategies to prevent oestrogen-receptor negative tumours and the long-term effects of chemoprevention for oestrogen-receptor positive tumours); (7) psychosocial aspects of cancer (the use of appropriate psychosocial interventions, and the personal impact of all stages of the disease among patients from a range of ethnic and demographic backgrounds). CONCLUSION Through recommendations to address these gaps with future research, the long-term benefits to patients will include: better estimation of risk in families with breast cancer and strategies to reduce risk; better prediction of drug response and patient prognosis; improved tailoring of treatments to patient subgroups and development of new therapeutic approaches; earlier initiation of treatment; more effective use of resources for screening populations; and an enhanced experience for people with or at risk of breast cancer and their families. The challenge to funding bodies and researchers in all disciplines is to focus on these gaps and to drive advances in knowledge into improvements in patient care

Congenital melanocytic naevus (CMN) through the lens: Using photo-elicitation interviews to explore adjustment in adolescents with a rare birthmark condition

Adolescents with the rare birthmarks congenital melanocytic naevi (CMN) experience physical and psychosocial challenges, many of which stem from looking different from the ‘norm’. However, some adjust and have positive experiences. Understanding the lived experiences of adolescents who have adjusted to CMN can provide a holistic picture of adjustment and inform the development of support and interventions for others with the condition. Open, participant-driven photo-elicitation interviews were conducted with four White females (15–17 years) who self-identified as having adjusted to CMN. Participants chose five photographs which were used to guide the interviews (47–80 min). Interpretative phenomenological analysis (IPA) was used to analyse the transcribed interview data. Three superordinate themes were identified: ‘Accepting My ‘True’ Self’ (1), ‘I am Not Alone in This’ (2), and ‘Developing as a Person’ (3). The themes related to accepting CMN as part of their identity, developing a positive body image (e.g., body appreciation, broad conceptualisations of beauty, body image flexibility), feeling supported and accepted by family, friends, and others with CMN, and developing adaptive coping skills. Findings suggest positive body image may be important for adjustment and can be determined by an individual. The benefits of using photo-elicitation within appearance research are discussed