Structuring Photovoice for Community Impact: A Protocol for Research With Women With Physical Disability

Women with disability face participation barriers based on long-held misconceptions around their identity that adversely affect their health, income levels, and access to education and employment. It has been noted that photographs produced through photovoice methodology can help dismantle attitudinal and environmental barriers that people with disability continue to confront, but this method is rarely assessed for impact. In this protocol paper, we merge principles of feminist theory, photovoice methodology and integrated knowledge translation to generate 1. exhibition-quality participant-created photography on identity, 2. discussion around and insight into inclusion for women with disability and 3. a public exhibition to understand any impact these photographs may have on audiences and discriminatory barriers. Photographs, text, discussions and audience feedback are to be interrogated through thematic and narrative analysis. By aiming our arts-based research findings for a public audience, we hope to advance understanding of female identity and inclusion.Frauen mit Beeinträchtigungen erleben oft Teilhabebarrieren infolge langdauernder Fehleinschätzungen über ihre Identität, gefolgt von negativen Effekten für ihre Gesundheit, ihr Einkommen und ihren Zugang zu Bildung und Arbeit. In rückliegenden Arbeiten wurde bereits gezeigt, dass Fotos, die mittels des Photovoice-Verfahrens produziert wurden, halfen, Einstellungs- und Umgebungsbarrieren abzubauen, allerdings wurde die Methode kaum mit Blick auf möglichen öffentlichen Impact genutzt. In diesem Protokollpapier haben wir Prinzipien miteinander verbunden, die auf feministische Theorien, die Photovoice-Methode und integrierte Wissensvermittlungspraktiken zurückgehen, um 1. ausstellungsreife Fotografien zur Identität der Forschungsteilnehmerinnen zu generieren, 2. zur Diskussion von und Einsicht in Inklusion für beeinträchtige Frauen beizutragen und 3. eine Ausstellung zu initiieren, um zu verstehen, welchen Impact die Fotos auf das Publikum und auf diskriminierende Barrieren haben können. Fotografien, Texte, Diskussionen und Publikums-Feedback wurden einer thematischen und narrativen Analyse unterzogen. Indem wir mit unserer kunstbasierten Forschung eine breite Öffentlichkeit adressierten, hoffen wir, zu einem besseren Verständnis von weiblicher Identität und Inklusion beigetragen zu haben

“Chains Weigh Heavy”: Body Mapping Embodied Experiences of Anxiety

Anxiety has both cognitive and somatic dimensions as is ubiquitous at a population level. We report on an arts-based research workshop gathering data on embodied experiences of anxiety and non-anxiety. We developed an innovative short body mapping workshop to collect data and undertook thematic analysis to analyse textual and visual data. 35 body maps were produced. “Tightness,” “pain,” and “heaviness” were the most frequently expressed embodied sensations of anxiety. By contrast, when not feeling anxious, participants’ bodies primarily felt “energetic,” “ordered,” and “open.” Anxiety was most frequently felt in the stomach, head and heart. 35 Participants mostly used an abstracted, rather than figurative, visual language to depict anxiety. Conclusions: Participants reported diverse bodily experiences of anxiety, some of which correlate with commonly identified somatic symptoms of anxiety. Other symptoms were unique to participants. The richness and diversity of anxiety experiences elicited during workshops indicates that the brief body mapping approach has potential application in future research, and in other settings

Digital Storytelling in Research: A Systematic Review

Digital storytelling refers to a 2 to 5 minute audio-visual clip combining photographs, voice-over narration, and other audio (Lambert, 2009) originally applied for community development, artistic and therapeutic purposes, and more recently adapted as an arts-based research method. To date, no systematic review of the use of digital storytelling in a research capacity, to generate information about a phenomenon has been conducted. Accordingly, our aim was to provide a systematic review of digital storytelling in research. The review identified 25 articles representing 23 discrete studies that met inclusion criteria. A thematic analysis of results indicated that digital storytelling in research was especially appropriate for use with marginalised groups, and was most commonly used in this context. There was some variation in the extent to which digital storytelling in research adhered to the principles with which it was originally developed. Surprisingly, although digital storytelling provides a ready-made knowledge translation product, few research projects employed the digital stories generated to this end. Across research projects, participants reported several benefits of digital storytelling. While some disadvantages were noted, overall, these were outweighed by the benefits of using a respectful, participatory research practice

What makes women tired? A community sample

We aimed to determine the major health concerns or problems of women and their personal attributions for the causes of their primary health concerns. We used a survey of women from the Toronto area attending a women\u27s health symposium. Completed questionnaires were returned by 153 (85%) of 180 women attendees. Persistent fatigue was the primary and most commonly cited health concern. Fatigue was ranked first by 42 (27.5%) women and among the top 10 concerns by 123 (80.4%) women. Women attributed their fatigue to a combination of home and outside work (63.4%), poor sleep (38.2%), lack of time for self (34.1%), lack of exercise (32.5%), financial worries (28.5%), relationship problems (22.0%), emotional causes (17.9%), care of ill family members (13.8%), lack of social or individual support (9.8%), poor physical health (8.9%), work in home or child care (3.3%), or gender bias/harassment (2.4%). Our subjects, women from the community, overwhelmingly endorsed social determinants as the cause of their persistent fatigue. Although depression and anxiety form the most robust associations with persistent fatigue in primary care and community studies, women in this sample ranked these factors in seventh place in their attributions. Similarly, although physicians often assume physical causes for fatigue, women rank physical health low in their own attributions. Given the high prevalence of fatigue in women and its impact on quality of life, more attention needs to be given to the social, systemic, and personal factors that women feel contribute to their fatigue to develop more effective interventions

Young people's response to six smartphone apps for anxiety and depression : focus group study

Background: Suicide is one of the most frequent causes of death in young people worldwide. Depression lies at the root of this issue, a condition that has a significant negative impact on the lives of those who experience it and on society more generally. However, 80% of affected young people do not obtain professional help for depression and other mental health issues. Therefore, a key challenge is to find innovative and appealing ways to engage young people in learning to manage their mental health. Research suggests that young people prefer to access anonymous Web-based programs rather than get face-to-face help, which has led to the development of numerous smartphone apps. However, the evidence indicates that not all of these apps are effective in engaging the interest of young people who are most in need of help. Objective: The study aimed to investigate young people’s response to six currently available smartphone apps for mental health and to identify features that young people like and dislike in such apps. Methods: Focus groups were conducted with 23 young people aged 13 to 25 years in which they viewed and used six smartphone apps for mental health. A general inductive approach following a realist paradigm guided data analysis. Results: The results revealed that young people value autonomy and the opportunity to personalize experiences with these apps above other things. Finding a balance between simplicity and informativeness is also an important factor. Conclusions: App developers need to consider using participant-design frameworks to ensure that smartphone apps are providing what young people want in a mental health app. Solutions to the need for personalization and increasing user engagement are also crucially needed

Estimating Cost of Air Pollution Abatement for Road Transport in India: Case Studies of Andhra Pradesh and Himachal Pradesh

This paper provides a method of estimation of physical and monetary accounts of air pollution from the road transport. Using the data from the secondary sources and a vehicular survey, estimates of annual air pollution abatement cost for the vehicles (passenger cars, trucks, buses and two wheelers) complying with Euro norms are made for the road transport sector in Andhra Pradesh (AP) and Himachal Pradesh HP) states. The pollution abatement cost of each vehicle comprises the cost of upgrading the vehicular technology and the cost of improving fuel quality. For example, this cost estimate is Rs. 32309.54 million for AP in the year 2001-2002 and Rs. 3688. 72 million for HP in the year 2002-2003 at current prices and it forms 2.134 percent and 5.88 percent of State Domestic Product of the respective states

What constitutes brilliant aged care? : a qualitative study of practices that exceed expectation

Aim: This study aimed to explore what constitutes brilliant aged care. Background: Although many aged care services do not offer the care that older people and carers need and want, some perform better. Rather than focus on problems with aged care, this study examined brilliant aged care—practices that exceeded expectation. Design: The methodology for this study was informed by grounded theory, under-pinned by constructionism to socially construct meaning. Methods: This study invited nominations for a Brilliant Award via a survey, and inter-views with the nominees via web conference. After receiving survey responses from 10 nominators, interviews were conducted with 12 nominees. Data were analysed using reflexive thematic analysis and documented according to COREQ guidelines to optimise rigour and transparency. Results: According to participants, brilliant aged care involved being relationally at-tuned to older people, a deep understanding of the older person, recognition of aged care as more than a job, innovative practices and permission to reprioritise. Conclusions: This study suggests that, in aged care, brilliance happens. It emphasises the importance of meaningful connections and relationships in aged care, where thoughtful acts acknowledge an older person's value and humanity as well as creativity and innovation. Relevance to Clinical Practice: For those who manage and deliver aged care, the findings suggest that small practice changes can make a positive difference to older people. Brilliant aged care can involve acts of empathy; enthusiasm for aged care; innovative practices, even those that are small scale; and reprioritising workplace tasks to spend time with older people. For policymakers, this study highlights the need to recognise and raise the profile of the pockets of brilliance within the aged care sector. This might be achieved via awards and other initiatives that serve to celebrate and learn from brilliance in its myriad forms. Patient or Public Contribution: The nominees, who included carers, were invited to participate in workshops with other carers and older people to co-design a model of brilliant aged care, during which workshop participants discussed and critiqued the findings constructed from the data

"Surviving discrimination by pulling together" : LGBTQI cancer patient and carer experiences of minority stress and social support

Background: Lesbian, gay, bisexual, transgender, queer and/or intersex (LGBTQI) people with cancer and their carers report poorer psychological outcomes than the general non-LGBTQI cancer population. There is growing acknowledgement that these health inequities can be explained by minority stress, which can be buffered by social support. Study Aim: To examine subjective experiences of minority stress and social support for LGBTQI people with cancer and their carers, drawing on qualitative findings from the Out with Cancer study. Method: An online survey including open ended items was completed by 430 LGBTQI cancer patients and 132 partners and other carers, representing a range of tumor types, sexual and gender identities, age and intersex status. A sub-sample of 104 patients and 31 carers completed an interview, with a follow-up photovoice activity and second interview completed by 45 patients and 10 carers. Data was thematically analysed using an intersectional theoretical framework. Results: Historical and present-day experiences of discrimination, violence, family rejection and exclusion created a legacy of distress and fear. This impacted on trust of healthcare professionals and contributed to distress and unmet needs in cancer survivorship and care. Social support, often provided by partners and other chosen family, including intimate partners and other LGBTQI people, buffered the negative impacts of minority stress, helping LGBTQI patients deal with cancer. However, some participants lacked support due to not having a partner, rejection from family of origin and lack of support within LGBTQI communities, increasing vulnerability to poor psychological wellbeing. Despite the chronic, cumulative impacts of minority stress, LGBTQI patients and carers were not passive recipients of discriminatory and exclusion in cancer care, demonstrating agency and resistance through collective action and advocacy. Conclusion: LGBTQI people have unique socio-political histories and present-day psycho-social experiences that contribute to distress during cancer. Social support serves to buffer and ameliorate this distress. There is a need for cancer healthcare professionals and support services to be aware of and responsive to these potential vulnerabilities, including the intersectional differences in experiences of minority stress and social support. There is also a need for recognition and facilitation of social support among LGBTQI people with cancer and their carers

LGBTQI cancer patients' quality of life and distress : a comparison by gender, sexuality, age, cancer type and geographical remoteness

Background: There is growing acknowledgement of the psycho-social vulnerability of lesbian, gay, bisexual, transgender, queer and/or intersex (LGBTQI) people with cancer. The majority of research to date has focused on cisgender adults with breast or prostate cancer. Study Aim: This study examined psycho-social factors associated with distress and quality of life for LGBTQI cancer patients and survivors, across a range of sexualities and gender identities, intersex status, tumor types, ages and urban/ rural/remote location using an intersectional theoretical framework. Method: 430 LGBTQI people with cancer completed an online survey, measuring distress, quality of life (QOL), and a range of psycho-social variables. Participants included 216 (50.2%) cisgender women, 145 (33.7%) cisgender men, and 63 (14.7%) transgender and gender diverse (TGD) people. Thirty-one (7.2%) participants reported intersex variation and 90 (20%) were adolescents or young adults (AYA), aged 15-39. The majority lived in urban areas (54.4%) and identified as lesbian, gay or bisexual (73.7%), with 10.9% identifying as bisexual, and 10.5% as queer, including reproductive (32.4%) and non-reproductive (67.6%) cancers. Results: Forty-one percent of participants reported high or very high distress levels, 3-6 times higher than previous non-LGBTQI cancer studies. Higher rates of distress and lower QOL were identified in TGD compared to cisgender people, AYAs compared to older people, those who identify as bisexual or queer, compared to those who identify as lesbian, gay or homosexual, and those who live in rural or regional areas, compared to urban areas. Elevated distress and lower QOL was associated with greater minority stress (discrimination in life and in cancer care, discomfort being LGBTQI, lower outness) and lower social support, in these subgroups. There were no differences between reproductive and non-reproductive cancers. For the whole sample, distress and poor QOL were associated with physical and sexual concerns, the impact of cancer on gender and LGBTQI identities, minority stress, and lack of social support. Conclusion: LGBTQI people with cancer are at high risk of distress and impaired QOL. Research and oncology healthcare practice needs to recognize the diversity of LGBTQI communities, and the ways in which minority stress and lack of social support may affect wellbeing

Attitudes, knowledge and practice behaviours of oncology health care professionals towards lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) patients and their carers : a mixed-methods study

Objective: There is growing recognition that health care professionals (HCPs) and policy makers are insufficiently equipped to provide culturally competent care to lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) cancer patients and their families. We examined HCP attitudes, knowledge, and practices regarding LGBTQI cancer care using a mixed-methods research design. Method: Surveys were completed by 357 oncology HCPs in nursing (40%), medical (24%), allied health (19%), and clinical leadership roles (11%); 48 of the surveyed HCPs were interviewed. Results: Most HCPs reported being comfortable treating LGBTQI patients, but reported low levels of confidence and knowledge and systemic barriers to LGBTQI cancer care. Most wanted more education and training, particularly on trans and gender-diverse people (TGD) and those born with intersex variations. Conclusion: Education of HCPs and health system changes are required to overcome barriers to the provision of culturally competent cancer care for LGBTQI patients. Practice implications: These findings reinforce the need for inclusion of LGBTQI content in HCP education and professional training curricula, and institutional support for LGBTQI-inclusive practice behaviours. This includes administrative and visual cues to signal safety of LGBTQI patients within cancer care, facilitating inclusive environments, and the provision of tailored patient-centred care