Experiences and impact of the UK lockdown amongst adults who have a facial visible difference.

Globally, COVID-19 has been shown to have had a wide ranging and significant impact on individuals' daily living, and physical and mental health. However, there are some groups of individuals who may encounter unique challenges with regards to COVID-19 and whose experiences have not been investigated thus far. Therefore, this study aimed to understand the experiences of adults with a facial visible difference in relation to COVID-19 and lockdown. Semi-structured interviews were conducted with 21 adults with a variety of facial visible differences (e.g., cleft lip/palate, facial scars, skin conditions) and analyzed using inductive reflexive thematic analysis. This analysis generated three themes (Escaping the external gaze; Existing feelings manifesting in new challenges; COVID-19 taking priority). The results of this study suggest that the first U.K. lockdown from the COVID-19 pandemic created significant challenges for some individuals with a facial visible difference, and ongoing restrictions and social distancing measures might be particularly challenging for those who experience anxiety around social encounters. These findings highlight the importance of providing appropriate and accessible support for people with facial differences during lockdown and as restrictions ease.

Physical appearance and well-being in adults with incurable cancer: a thematic analysis.

OBJECTIVES: Existing research has established the importance of appearance concerns for individuals with cancer and identified appearance as an important factor in dying with dignity. No research, however, has explored in depth the role of appearance in the experiences of individuals who have incurable cancer. This research aims to explore patients' experiences and perspectives in relation to the role of appearance issues in adults with incurable cancer. METHODS: Semi-structured interviews were conducted with 24 adults with incurable cancer (20 women, 4 men; mean age 54.5, SD 11.32). RESULTS: Thematic analysis generated three themes: 'Identity: Embodying Cancer', 'Communication: Wearing your illness' and 'Support: Holistic Care'. Appearance was felt to be an important element of identity, which was often dominated by cancer, leading to feelings of separation from the participant's previous self. Appearance changes also influenced the way in which individuals communicated with their external world, forcing discussion of their diagnosis, and increasing focus on their cancer, with participants having to manage the emotional impact of this on loved ones, as well as the impact on their legacy. Finally, participants highlighted the positive impact of appearance-related support in their well-being and identified peer connections and refocusing on the self as key elements of such support. CONCLUSIONS: Appearance changes play an important role in the experiences of individuals with incurable cancer with regards to both identity and communication and challenged participants' ability to maintain normalcy. Further psychosocial support relating to appearance concerns was considered necessary to promote dignity and provide truly holistic patient care.

Exploring parents' attitudes towards a multicentre cohort study of children with burns injuries: A qualitative interview study.

Background: Burn injuries affect more than 60,000 children every year in the UK, with many experiencing scarring as a result. Scarring can be highly variable, and research is required to explore the factors that may influence variability, as well as the psychosocial impact of these injuries on children and their caregivers. A multicentre burns cohort study is being planned to investigate genetic determinants of scarring and long-term psychosocial outcomes. Public involvement (PI) is an essential element of the design and feasibility stages of this planning. As part of this work, this study aimed to gain an in-depth understanding of parents' attitudes towards participation in burns research, specifically a longitudinal cohort study of children with small burns (<10% total body surface area [TBSA]). Methods: In total, 16 parents of children with burns took part in semi-structured interviews regarding their experiences of taking part in research and their attitudes towards the potential future cohort study. Interviews were audio-recorded, transcribed verbatim and analysed using Reflexive Thematic Analysis. Results: Four themes were identified: 'Acknowledging trauma'; 'Aligning research with experience'; 'Research as a reciprocal relationship'; and 'Contributing to change'. Discussion: These four themes represent factors that parents suggested were important for acceptability, relevance, recruitment and retention of participants into a longitudinal multicentre cohort study of children with a burn injury and their caregivers. Conclusion: The findings of this study will be incorporated into the design of such a study, as well as having wide reaching relevance for research in the field of paediatric burn injuries. Lay Summary: Background to this subject More than 60,000 children experience a burn injury every year in the UK and many of these injuries lead to scarring. We know that the extent of this scarring can vary, and we know that some children and their parents/caregivers manage well but others struggle with the challenges they face after having a burn. Researchers would like to carry out research on these topics, including asking participants to take part in research over several years to find out how genetics might influence scarring, as well as their psychological experiences over this time. Before they conduct this study, it is very important that researchers understand parents' attitudes towards this kind of research. The current study aimed to find out parents' opinions and ask what issues were important to them when taking part in burns research. Details of how the work was conducted Parents of children who had experienced a scald (a type of burn injury) were asked to take part in a research interview. In total, 16 parents took part in this study. We recorded these interviews and analysed them, looking for patterns and shared experiences in participants' interviews. What we did and did not learn from this study We found four themes in the interview data: 'Acknowledging trauma', 'Aligning research with experience', 'Research as a reciprocal relationship', and 'Contributing to change'. Overall, these themes suggest that parents were mostly supportive of a 'burns cohort study', but they have also highlighted some important considerations for this research and other future burns research studies.

'They were aware of who I was as a person': Patients' and health professionals' experiences of using the PEGASUS intervention to facilitate decision-making around breast reconstruction.

OBJECTIVE: Many women choose to have breast reconstruction after mastectomy; however, decision-making can be difficult and expectations are often unmet. The PEGASUS intervention (Patient Expectations and Goals: Assisting Shared Understanding of Surgery) was developed to support shared decision-making by helping women and healthcare professionals to clarify and discuss their individual expectations around surgery. This study aimed to explore patients' and health professionals' experiences of using the intervention and its implementation. METHODS: Forty interviews were conducted with participants in a large scale, multi-site trial of the effectiveness of PEGASUS, from 'intervention' (n=16) and 'usual care' groups (n=11), and healthcare professionals (n=13). Data were analysed using thematic analysis. RESULTS: 'Usual care' participants described feeling overwhelmed in decision-making ('bombarded'), often using their own research to break down information ('process of elimination'). In contrast, intervention group participants described PEGASUS providing focus ('focus amongst the frenetic'), and increased connection with clinicians ('more than a number'). Healthcare professionals described increased focus on patient priorities ('shifting focus'), but stressed the need for whole team buy-in ('collective commitment'). CONCLUSIONS: The PEGASUS intervention offered a qualitatively different experience to individuals considering breast reconstruction, with potential to enhance patients' and healthcare professionals' feelings of shared decision-making and patient-centred care. TRIAL REGISTRATION: ISRCTN 18000391 (https://doi.org/10.1186/ISRCTN18000391) 27/01/2016.

The CARe Burn Scale-Adult Form: Translation and linguistic validation into Finnish.

BACKGROUND: Burn injury can dramatically deteriorate health-related quality of life. Effective burn care may minimize the impact of the burn injury and ensure optimal functional outcome. This requires continuous improvement in burn care and assessment of treatment results. The aim of this study was to translate, culturally adapt and linguistically validate the CARe Burn Scale-Adult Form, a burn-specific patient-reported outcome measure, into Finnish. METHODS: The translation process followed the International Society for Pharmacoeconomics and Outcomes Research guidelines consisting of forward and backward translations, pilot-testing and cognitive debriefing interviews of five burn patients, and proofreading before finalizing. The process involved expert panel meetings and continuous discussion between the developers of the Scale and the research group. RESULTS: In the forward translation 10 amendments were required. After the backward translation, 12 items were reworded. Cognitive debriefing interviews led to three alterations enhancing the comprehensiveness and accuracy of the translation. The translation was reviewed by burn occupational therapists for practicality, resulting in 12 modifications. Minor grammatical changes were made after proofreading. CONCLUSION: The Finnish version is the first foreign translation of the CARe Burn Scale. It is equivalent to the original Scale and ready for psychometric validation with burn patients in Finland.

The development and validation of the CARe Burn Scale: Child Form: a parent-proxy-reported outcome measure assessing quality of life for children aged 8 years and under living with a burn injury.

PURPOSE: Patient-reported outcome measures (PROMs) identify patient needs and therapeutic progress. This paper outlines the development and validation of the CARe Burn Scale: Child Form, a parent-proxy-reported outcome measure that assesses quality of life in children aged 8 and under living with a burn injury. METHODS: A literature review and interviews with 12 parents of children with a burn and seven health professionals informed the development of a conceptual framework and draft PROM. Cognitive debriefing interviews with 18 parents and eight health professionals provided feedback to ascertain content validity, and 311 parents took part in field testing. Rasch and traditional psychometric analyses were conducted to create a shortened version. Further psychometric analyses with 133 parents tested the shortened CARe Burn Scale in relation to other parent-proxy measures. RESULTS: The final conceptual framework included 5 domains: Social and Emotional Difficulties, Social and Emotional Well-Being, Wound/Scar Discomfort, Wound/Scar Treatment and Physical Abilities. Two scales fulfilled Rasch and traditional psychometric analyses, providing evidence of construct validity, acceptability, and reliability. Three scales did not fulfil the Rasch criteria and were retained as checklists. Compared to other parent-proxy measures, individual CARe Burn Scales correlated moderately with similar constructs and had low correlations with dissimilar constructs, indicating evidence of criterion validity (concurrent and discriminant). CONCLUSIONS: The CARe Burn Scale: Child Form can be used to measure children's quality of life after having a burn injury which can inform rehabilitation and surgical decision-making.

Contralateral Prophylactic Mastectomy (CPM) and the clinical consultation: A snapshot of UK healthcare professionals' views and experiences.

OBJECTIVES: Increasing numbers of women are undergoing Contralateral Prophylactic Mastectomy (CPM) in the UK. However, professional guidelines suggest CPM does not offer oncological benefit to the majority of women with breast cancer. Whilst research has explored women's motivations for seeking CPM, this study aimed to address a gap in the literature by investigating healthcare professionals' (HCPs) experiences and attitudes of caring for women considering CPM. MATERIALS AND METHODS: HCPs involved in the care of women considering CPM were invited to complete an online survey concerning: the process and management of decision-making, their attitudes towards CPM provision and challenges they faced in CPM provision. RESULTS: Fifty-eight HCPs completed the survey. Respondents felt that perceived future breast cancer risk was women's most common motivation for CPM. Fifty-four percent of respondents agreed patients should be offered the choice of CPM for risk reduction if they are at increased clinical risk. Fifty-one percent agreed patients should be offered the choice of CPM as a means of achieving symmetry, and 19% agreed that women should be offered CPM for reasons related to risk-reduction, if they were not thought to be at an increased clinical risk. Patients' understanding of risks versus benefits was seen as the greatest challenge facing HCPs. CONCLUSION: Many respondents were hesitant to explore CPM with all patients in their care, reflecting current service restrictions and their own beliefs around CPM. These findings highlight the need for exploration of patient's perspectives on this process and a review of care provision and information available related to CPM.

Women's initial experiences of their appearance after mastectomy and/or breast reconstruction: A qualitative study.

OBJECTIVE: Surgical procedures intended to treat breast cancer or reduce risk of developing the disease typically result in changes to appearance and scarring of the breast area, and any donor sites. The longer-term impact of these changes on body image and quality of life are well documented, but research in this field has failed to explore women's initial experiences of their appearance after surgery. This study used a qualitative approach to gain insight and better understand the experiences of women at this time point in their treatment pathway. METHODS: Women (n=128) who had undergone mastectomy and/or breast reconstruction following a diagnosis of breast cancer or to reduce their risk of developing the disease completed an online survey. Open-ended questions asked participants about their experiences when seeing the postsurgical appearance of their breast/breast area (and donor site, if relevant) for the first time, and the support available to them. RESULTS: Thematic analysis generated four key themes: "preparedness and support," "first thoughts and emotions," "loss and grief," and "the reaction of others." CONCLUSIONS: There was considerable variability in women's experiences. Some felt prepared and emotionally supported at this time, whilst others felt this element of care was missing. The findings suggest that there is a need to ensure all women are informed and have the necessary support when looking at the results of their surgery for the first time. Areas for improvement were proposed, including preoperative discussions, increased preparation and support. This could potentially contribute to better patient outcomes overall.

"It felt like unfinished business, it feels like that's finished now": Women's experiences of decision making around contralateral prophylactic mastectomy (CPM).

OBJECTIVE: Increasing numbers of women in the United Kingdom are choosing to have a contralateral prophylactic mastectomy (CPM) after diagnosis of breast cancer. Whilst research suggests that many experience high rates of psychological well-being after CPM, professional guidelines suggest CPM is "not required" for the majority of unilateral breast cancer patients, and some individuals consider the surgery to be controversial. Existing research has explored patients' reasons for seeking CPM; however, little is known about their experiences of decision making. This study aimed to investigate women's experiences of decision making around CPM in the United Kingdom. METHODS: Semistructured qualitative interviews were conducted with 27 women, recruited through breast cancer support charities. All participants had CPM in the United Kingdom after a diagnosis of unilateral breast cancer, ductal carcinoma in situ (DCIS), or invasive ductal carcinoma. Data were analysed using thematic analysis. RESULTS: Two main themes were generated from the analytic process: "sanity check" ("battling for CPM," "feeling stigmatised," "seeking similar others") and "reclaiming the body" ("being true to self," "moving forward"). Women described defending their decision to have CPM, concerns that their thoughts about surgery may be considered "abnormal," and seeking support from peers. The decision to have CPM was discussed in terms of their future relationship with their body and moving forward after cancer. CONCLUSIONS: This study highlights the importance of interactions with health care professionals in the decision-making experience, the role of peer support, and the need to fully understand the potentially complex and multifaceted nature of each woman's decision to seek CPM.

The Development and Validation of the CARe Burn Scale-Adult Form: A Patient-Reported Outcome Measure (PROM) to Assess Quality of Life for Adults Living with a Burn Injury.

Patient-Reported Outcome Measures (PROMs) identify vital information about patient needs and therapeutic progress. This paper outlines the development and validation of the CARe Burn Scale-Adult Form: a PROM that assesses quality of life in adults living with a burn injury. Eleven patients, 10 family members and 4 health professional interviews, and a systematic review informed the development of a conceptual framework and a draft measure. Cognitive debriefing interviews conducted with three adult burn patients, one family member, and eight health professionals provided feedback to ascertain content validity of the measure. The measure was then field tested with 304 adult burn patients. Rasch psychometric analysis was conducted for scale reduction, and traditional psychometric analyses provided a comparison with other measures. Further psychometric testing with an additional 118 adult burn patients tested the shortened CARe Burn Scale in relation to other quality of life PROMs. The conceptual framework outlined 14 domains; 12 of which fulfilled Rasch and traditional psychometric analyses. Two individual scales did not fulfill the Rasch criteria and were retained as checklists. Individual CARe Burn Scales correlated moderately-to-highly with other quality of life scales measuring similar constructs, and had low-to-no correlations with dissimilar constructs and the majority of sociodemographic factors, indicating evidence of concurrent and divergent validity. The CARe Burn Scale-Adult Form can help identify patient needs and provides burns-specialist health professionals with a tool to assess quality of life and therapeutic progress after a burn event and related treatment.

The importance of relationships in treatment for chronic leg ulceration.

Leg ulcers are a hard-to-heal wound that can have a profound impact on the lives of those that they affect. While a significant body of evidence has explored the efficacy of various treatments for leg ulcers, little research has addressed the patient experience of such treatment. A total of 21 participants were recruited for this qualitative interview study, exploring patient's experiences of non-surgical treatment for leg ulcers. Thematic analysis identified two major themes, 'Failure' and 'Powerlessness', as well as the overarching theme of 'Relationships'. These findings are discussed in relation to concepts of acceptance and in the broader context of patient-centred care.

Surgical management for venous leg ulcers: The role of hope, investment and agency.

A recent systematic review suggests that minimally invasive venous surgery for the treatment of leg ulcers may have a greater impact on quality of life than traditional approaches. A total of 11 participants who had previously undergone surgical management for leg ulcers took part in semi-structured interviews regarding their experiences. Using thematic analysis, three themes were identified: 'Living in Flux', 'Perceptions of Chronicity' and 'Expectations'. Surgical treatment may not only improve patients' quality of life due to treatment of the condition but also by opening up a sense of hope, investment and agency not associated with traditional treatment approaches.

The comparative impact of conservative treatment versus superficial venous surgery, for the treatment of venous leg ulcers: A systematic review of the impact on patients' quality of life.

OBJECTIVES: Leg ulcers are known to have a profound effect on patients' quality of life; however, the influence of different treatment approaches is unclear. This review aims to evaluate the comparative impact of conservative treatments and superficial venous surgery, for venous leg ulcers, on patients' Quality of Life. DATA SOURCES: Three electronic databases (PsycInfo, Medline and CINAHL), and reference lists of relevant articles, were searched. A total of 209 articles were initially identified, and 16 articles were included in the review. RESULTS: The results lend cautious support to the suggestion that all treatments have a positive effect on quality of life, regardless of type, whilst wound status also appears to be an important factor. CONCLUSIONS: Some evidence suggests that surgical treatment methods may lead to greater improvements in patients' quality of life than compression bandaging alone; however, future research may focus on the psychological mechanisms underlying such changes.