[Show abstract][Hide abstract] ABSTRACT: Neurofibromatosis type 1 (NF1) is a variable and unpredictable genetic condition that can lead to changes to an individual's appearance. Research has started to explore children's and young people's experiences of living with the condition; however, there is a lack of research with parents. This exploratory qualitative study set out to examine parents' experiences of caring for a young person with NF1. Seven parents took part in semi structured interviews which were subjected to a thematic analysis. Three key themes were identified which related to managing the uncertainty of the condition, the impact of an altered appearance, and others' awareness and understanding of NF1. Parents felt that understanding NF1 themselves in order to support their child was beneficial whilst a perceived lack of understanding by others was cited as a significant challenge. Parents require trustworthy information and also more widely call for greater understanding and awareness of the condition.
Journal of community genetics 07/2015; DOI:10.1007/s12687-015-0247-z
[Show abstract][Hide abstract] ABSTRACT: Background. The Derriford Appearance Scale24 (DAS24) is a widely used measure of distress and dysfunction in relation to self-consciousness of appearance. It has been used in clinical and research settings, and translated into numerous European and Asian languages. Hitherto, no study has conducted an analysis to determine the underlying factor structure of the scale. Methods. A large (n = 1,265) sample of community and hospital patients with a visible difference were recruited face to face or by post, and completed the DAS24. Results. A two factor solution was generated. An evaluation of the congruence of the factor solutions on each of the the hospital and the community samples using Tucker's Coefficient of Congruence (r c = .979) and confirmatory factor analysis, which demonstrated a consistent factor structure. A main factor, general self consciousness (GSC), was represented by 18 items. Six items comprised a second factor, sexual and body self-consciousness (SBSC). The SBSC scale demonstrated greater sensitivity and specificity in identifying distress for sexually significant areas of the body. Discussion. The factor structure of the DAS24 facilitates a more nuanced interpretation of scores using this scale. Two conceptually and statistically coherent sub-scales were identified. The SBSC sub-scale offers a means of identifying distress and dysfunction around sexually significant areas of the body not previously possible with this scale.
[Show abstract][Hide abstract] ABSTRACT: Good practice guidelines recommend that women who undergo mastectomy are offered reconstructive surgery. However, many who choose this option report a degree of decisional regret and dissatisfaction because their pre-surgical expectations were not met. This paper reports an acceptability study of a new intervention (PEGASUS) that aims to support shared decision-making by eliciting women's pre-surgical expectations and setting patient-centred goals. Eighteen women contemplating breast reconstruction completed the PEGASUS intervention. Semi-structured interviews were conducted with 12 women and 3 health professionals to explore their experiences of using PEGASUS. Interview transcripts were subjected to a thematic analysis, and a content analysis was conducted on 79 goals that the 18 women identified. Feedback was extremely positive - women found that completing PEGASUS alongside a discussion with a specially trained health professional helped them prepare for the surgical consultation and increased their trust in their surgeon. Staff reported that PEGASUS facilitated patient-centred discussions and informed the decisions made about potential surgery. This preliminary study suggests that this novel intervention is acceptable to patients and health professionals alike. Further work is needed to evaluate its efficacy and then its effectiveness with a larger sample of women, and its potential use with other patient groups.
Psychology Health and Medicine 06/2015; DOI:10.1080/13548506.2015.1051059 · 1.53 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Introduction
Patient reported outcome measures (PROMs) can identify important information about patient needs and therapeutic progress. The aim of this review was to identify the PROMs that are being used in child and adolescent burn care and to determine the quality of such scales.
Computerised and manual bibliographic searches of Medline, Social Sciences Index, Cinahl, Psychinfo, Psycharticles, AMED, and HAPI, were used to identify English-language articles using English-language PROMs from January 2001 to March 2013. The psychometric quality of the PROMs was assessed.
23 studies met the entry criteria and identified 32 different PROMs (31 generic, 1 burns-specific). Overall, the psychometric quality of the PROMs was low; only two generic scales (the Perceived Stigmatisation Questionnaire and the Social Comfort Scale) and only one burns-specific scale (the Children Burn Outcomes Questionnaire for children aged 5–18) had psychometric evidence relevant to this population.
The majority of PROMs did not have psychometric evidence for their use with child or adolescent burn patients. To appropriately identify the needs and treatment progress of child and adolescent burn patients, new burns-specific PROMs need to be developed and validated to reflect issues that are of importance to this population.
[Show abstract][Hide abstract] ABSTRACT: Objective : To explore older adults' experiences of living with cleft lip and/or palate (CL/P), focusing on aging and appearance. Design : An exploratory-descriptive qualitative study. Participants : Individual semi-structured interviews (five via telephone, one face-to-face) conducted with six adults between the ages of 57 and 82 years. Results : Interview transcripts were analyzed using interpretative phenomenological analysis, which resulted in five themes: cleft across the life span, keeping up appearances, being one of a kind, resilience and protection, and cleft in an ever-changing society. A CL/P had an ongoing impact on participants' lives, although its relevance shifted over time and some aspects of life (e.g., romantic relationships, decisions about having children of their own) were particularly affected. Participants seemed at ease living with CL/P as an older adult and considered it an important aspect of their identity, yet they still described feeling isolated at times and had little contact with other people with a cleft. They felt that health care could be more considerate to the needs of older people with a cleft, particularly around dentistry and information provision. Participants thought societal attitudes toward visible differences had changed over the years, but not necessarily for the better. A paradox was evident between reports of being noticed by others because of their cleft and simultaneously feeling invisible or ignored because of their age. Conclusions : These findings have implications for provision of care for older adults with a CL/P and for younger people with a CL/P who will be the older generation of the future.
[Show abstract][Hide abstract] ABSTRACT: Body dissatisfaction can be significantly detrimental to wellbeing. Little is known about older adults' body image, despite the fact that ageing causes unique bodily changes and that sociocultural pressures to resist these changes abound. We conducted six focus groups with a UK community sample of White British and South Asian older adults aged 65-92 years. Thematic analysis highlighted four themes: appearance indicates capability and identity; physical ability trumps appearance; felt pressures to age 'gracefully' while resisting appearance changes; and gender and cultural differences. These findings suggest that older adults' body image can have important implications for their wellbeing and merits researchers' attention.
Journal of Health Psychology 04/2014; DOI:10.1177/1359105314531468 · 1.88 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Breast cancer is one of the most common forms of cancer in the UK, and affects women of all ethnic groups. The psychosocial impact of breast cancer has been well documented. However, research conducted in this area has been primarily focused on white women. There is very little work within the breast cancer literature that captures the experiences of black and minority ethnic (BME) women. The aim of this qualitative study was to explore the experiences of breast cancer diagnosis and treatment in black and South Asian women living in the UK. Individual semi-structured interviews were conducted with 22 English-speaking breast cancer survivors (11 black and 11 South Asian women). Thematic analysis of the data revealed five key themes, namely social support, spirituality, body image concerns, healthcare experiences and life after cancer. The findings showed that although the BME women shared similar concerns to white women, their experiences were also influenced by cultural specific concerns. This study has implications for healthcare professionals and recognises the need to provide culturally sensitive care and support to BME women, tailored specifically to their values and beliefs.
Diversity and Equality in Health and Care 01/2014; 11(2).
[Show abstract][Hide abstract] ABSTRACT: To explore the day-to-day experience of young people living with neurofibromatosis type 1 in the UK, focusing on the role that appearance plays in this experience.
neurofibromatosis type 1 is a genetic condition, which is highly variable and unpredictable. It can result in varying degrees of visible difference (disfigurement). Both the effect of NF1 on appearance and its uncertainty can prove particularly difficult for those affected. However, very little research to date has investigated the psychosocial impact of neurofibromatosis type 1 on young people or their experiences of managing it.
Exploratory qualitative interview study.
Nine young people aged 14-24, with a confirmed diagnosis of neurofibromatosis type 1, took part in semi-structured interviews between March-September 2011. Interview transcripts were thematically analysed.
Three key themes were identified from the data: (1) 'Different things to different people' reflecting the variability in the condition; (2) 'Relationships and reactions' relating to individuals' social experience; and (3) 'Understanding and misunderstanding' reflecting participants' experiences with organizations and social structures.
Findings suggest a need for further research to explore young people's adaptation and management of neurofibromatosis type 1. In particular, raising awareness and understanding of the condition among professionals and in the general public was an important issue for young people. In addition, access to trustworthy information about neurofibromatosis type 1 and practical advice to support adjustment to an altered appearance and managing stigma experiences are highlighted as areas to be considered further.
[Show abstract][Hide abstract] ABSTRACT: Psychosocial difficulties have been reported in head and neck cancer (HNC) patients, yet only few studies have assessed the impact of altered appearance following HNC treatment using theoretically selected measures of appearance-related distress. This study investigated appearance-related adjustment following HNC, and demographic and socio-cognitive predictors of adjustment. HNC patients (n = 49) completed baseline questionnaires and a nine-month postal follow-up (n = 20). Participants showed considerable variation in appearance-related adjustment, with females reporting higher levels of appearance-related distress (derriford appearance scale [DAS-24]) than females in the general population and male HNC survivors. Depression scores on the hospital anxiety and depression scale were higher than UK norms whilst anxiety was similar to UK norms. There were no significant differences between baseline and follow-up data. Fear of negative evaluation (a central feature of social anxiety) was a significant predictor of appearance-related adjustment at baseline, whilst dispositional optimism was a significant predictor of appearance-related adjustment at baseline and follow-up. Qualitative responses showed themes of appearance and disability, and coping strategies. Findings suggest that appearance-related adjustment post-HNC varies considerably and psychosocial services working with HNC patients should consider this broad pattern of response. Future research to examine the role of socio-cognitive predictors of appearance-related adjustment could progress development of effective psychological interventions.
Psychology Health and Medicine 11/2013; 19(5). DOI:10.1080/13548506.2013.855319 · 1.53 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Abstract Purpose: This study investigates experiences of dating and intimate relationships amongst women who use a below-knee prosthesis. Method: Four women took part in semi-structured online interviews. Transcripts were subject to interpretative phenomenological analysis (IPA). Results: Five themes were identified: Revealing and Exposing: Disclosing the Amputation and Prosthesis; Judging and Judged: Internal Fears and Self-Doubt; Trusting and Accepting: Good Guy/Bad Guy Elimination; Taking it Further: The Need for Depth; and Realisation: Accepting and Feeling Accepted. Participants described how, despite negative feelings towards their appearance and body image, they chose not to conceal their prosthesis when dating. Rather, it was used as a means of screening potential partners in their search for deep and meaningful relationships. Realising that others were not prejudiced towards people who use a prosthetic had helped them become more comfortable with their own prosthesis. Conclusion: These findings suggest that facilitating contact with other below-knee amputees and, in some cases specialist support, could help those who are struggling with the challenges they face regarding dating and intimate relationships. They also highlight the need for researchers and clinicians to give more attention to these important aspects of amputees' lives. Implications for Rehabilitation Amputation can have a significant psychosocial impact for those affected. The relative invisibility of below-knee amputation and prostheses can present particular challenges for amputees looking to establish romantic and intimate relationships, particularly around when and how to disclose the limb loss to potential partners. Developing a sense of resilience to the reactions of other people can help those who have undergone below-knee amputation. Support for people affected by below-knee amputation should routinely consider their needs and concerns in relation to new and established relationships, offer specialist psychosocial input when needed and provide opportunities for support from other amputees.
Disability and Rehabilitation 05/2013; 36(5). DOI:10.3109/09638288.2013.797509 · 1.84 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: This study evaluated an adapted version of 'Happy Being Me', a school-based body image intervention, with girls and boys aged 10-11 years. Forty-three children participated in a three-week intervention, and 45 children formed a control group. Both groups completed measures of body satisfaction, risk factors for negative body image, eating behaviors, self-esteem, and intervention topic knowledge, at baseline, post-intervention, and three month follow-up. For girls, participation in the intervention resulted in significant improvements in body satisfaction, appearance-related conversations, appearance comparisons, eating behaviors and intervention topic knowledge at post-intervention, although only the change in body satisfaction was maintained. There was also a significant decrease in internalization of cultural appearance ideals from baseline to follow-up. For boys, participation in the intervention resulted in significant improvements in internalization and appearance comparisons at post-intervention; however, neither of these changes were sustained at follow-up. There were no improvements in the control group over time.
Body image 04/2013; 10(3). DOI:10.1016/j.bodyim.2013.02.008 · 2.19 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Objective To explore patients' motivations and expectations for dental implants.Design Single-setting, qualitative interview study.Subjects, setting and method Semi-structured, telephone interviews were conducted with nine patients who had consulted a restorative dental practitioner with an interest in implantology about the possibility of replacing their missing teeth with dental implants.Outcome measure Interview transcripts were subjected to thematic analysis to identify relevant themes.Results The main theme to emerge was 'normality'. Participants expected implants to restore their oral-related quality of life to 'normal'. However, individual definitions of normality differed; some were appearance focused, while others were more concerned with functioning. Several participants who had completed implant treatment regarded their new prostheses as 'just like natural teeth'.Conclusions Patients' belief that dental implants are just like natural teeth could be cause for concern if it leads them to treat them as such, and thereby not follow the recommended specialist care they require. The findings emphasise the importance of good dental practitioner-patient communication in assessing expectations of treatment and outcomes. Further studies should explore the expectations of patients of different ages and socioeconomic backgrounds and consider ways of eliciting patients' beliefs about implants before treatment takes place.
British dental journal official journal of the British Dental Association: BDJ online 01/2013; 214(1):E1. DOI:10.1038/sj.bdj.2012.1178 · 1.08 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Key points
• Deciding whether or not to undergo breast reconstruction after mastectomy can be very difficult.
• BRECONDA is a new theory-guided, computer-based interactive intervention to help women make this
• Participants in a mixed-methods acceptability study (n=24) rated BRECONDA very highly in terms of acceptability and ease of use. Interview data indicated that they perceived it to be well-balanced, informative
and beneficial to the decision-making process and that it helped them feel more secure in their decision and to prepare for consultations.
• BRECONDA has potential to assist mastectomy patients in their decisions regarding breast reconstruction.
• A randomised controlled trial is now exploring the longer-term impact of BRECONDA across a wide range of breast surgical clinics, to delineate the specific components of this intervention that provide greatest benefit.
[Show abstract][Hide abstract] ABSTRACT: Some people who have a visible difference (disfigurement) experience psychosocial adjustment problems that can lead to social anxiety and isolation. The aim of this study was to assess the effectiveness of a new computerised CBT-based intervention (Face IT) in reducing anxiety and appearance-related distress for individuals with visible differences. Face IT was tested against a non-intervention control group and standard CBT-based face-to-face delivery. Eighty-three participants were assessed at four time points using the Hospital Anxiety and Depression Scales, Derriford Appearance Scale-24, Body Image Quality of Life Inventory and Fear of Negative Evaluation (FNE). The findings indicate a significant reduction in anxiety and appearance-related distress in both the Face IT intervention and the face-to-face condition. Similar findings were reported for depressive symptoms and FNE. Results at the three and six months follow-up demonstrate increased improvements in psychological functioning with both interventions. This new online psychosocial intervention has been found to be effective at reducing anxiety, depression and appearance concerns amongst individuals with disfigurements, whilst increasing positive adjustment. A remote-access, computer-based intervention offers the potential to provide psychosocial support more easily and in a cost-effective manner to adults with appearance-related distress.
Psychology Health and Medicine 02/2012; 17(5):565-77. DOI:10.1080/13548506.2011.647701 · 1.53 Impact Factor