Black Veterans Experiences with and Recommendations for Improving Weight-Related Health Care: A Photovoice Study.

BACKGROUND: Non-Hispanic Black or African American (hereafter Black) veterans lose less weight than other users of the Veterans Health Administration's (VHA) weight management program (MOVE!), despite higher enrollment. OBJECTIVE: To understand factors that affect weight loss disparities between Black veterans and other veterans. DESIGN: Qualitative study using Photovoice methods. PARTICIPANTS: Self-identified Black veterans in MOVE! across the USA (two women, seven men). APPROACH: We conducted six virtual Photovoice sessions with Black veterans. Session one provided orientation to the goal of understanding factors that might affect weight loss disparities. Participants chose missions related to weight management and VHA care, bringing photos or other media (e.g., poems) to discuss during remaining sessions. Facilitators/participants identified themes related to each session in real time. Between and after sessions, facilitators/investigators conducted rapid qualitative analysis of transcripts/audio to group similar themes, identify illustrative quotes/photos/other media, and prepare dissemination products (e.g., this manuscript). Participants provided feedback on the manuscript during an additional session. KEY RESULTS: Themes were identified across three categories: (1) Food in Our Lives and Health Care; (2) Body Image; and (3) Healthcare Bias and Discrimination. The emotional impact of food and the negative effects of bias and discrimination on health care quality and trust were especially salient. Participants provided recommendations for weight-related and general care. Notable recommendations included the need for VHA to hire and retain providers-especially Black providers-who understand and respect Black patients and are committed to delivering evidence-based, culturally sensitive care. In addition, weight management care should be tailored to individual patients' diets and health beliefs and deemphasize body mass index. CONCLUSIONS: Photovoice resulted in concrete targets that could reduce health disparities. Institutions should consider Photovoice and similar approaches to build trust with and incorporate input from marginalized communities. This approach requires sustained commitment from leaders to engage stakeholders and implement solutions.

Understanding the Experience of Cancer Survivorship Among Pediatric and Adolescent Cancer Survivors and Their Parents Through Camera Lenses: A Photovoice Study.

OBJECTIVE: Although the relative survival rate of childhood cancer has increased substantially in recent years, the pursuit of successful outcomes is often accompanied by negative impacts on pediatric and adolescent cancer survivors and their parents' physical and psychological well-being. However, little is known about their experiences during the period of cancer survivorship. This study aimed to gain an understanding of the experience of cancer survivorship among pediatric and adolescent cancer survivors and their parents. METHODS: This study utilized a descriptive qualitative study employing the photovoice design. From September 2022 to March 2023, 17 pediatric and adolescent cancer survivors (9-18 years), who had completed active treatment at least 6 months before recruitment, participated in this study. A total of 217 photographs submitted by survivors and their parents and the interview data, were thematically analyzed to identify themes and subthemes. RESULTS: The analysis revealed five prominent themes: indelible marks, struggling with late effects, striving to return to normalcy, the strength of support, and living in the moment and hope for the future. CONCLUSION: The findings shed light on the experiences of pediatric and adolescent cancer survivors and their parents throughout the cancer journey, elucidating the influence on both negative and positive aspects. Additionally, the study highlighted that photovoice facilitated self-reflection, the discovery of values, and the recognition of strengths and can be a therapeutic strategy for pediatric and adolescent cancer survivors and their parents in further research.

Family and community resilience: a Photovoice study.

BACKGROUND: Adverse childhood experiences (ACEs), in combination with adverse community environments, can result in traumatic stress reactions, increasing a person's risk for chronic physical and mental health conditions. Family resilience refers to the ability of families to withstand and rebound from adversity; it involves coping with disruptions as well as positive growth in the face of sudden or challenging life events, trauma, or adversities. This study aimed to identify factors contributing to family and community resilience from the perspective of families who self-identified as having a history of adversity and being resilient during the COVID-19 pandemic. METHODS: This study used Photovoice, a visual participatory research method which asks participants to take photographs to illustrate their responses to a research question. Participants consisted of a maximum variation sample of families who demonstrated family level resilience in the context of the pair of ACEs during the COVID-19 pandemic. Family members were asked to collect approximately five images or videos that illustrated the facilitators and barriers to well-being for their family in their community. Semi-structured in-depth interviews were conducted using the SHOWeD framework to allow participants to share and elucidate the meaning of their photos. Using thematic analysis, two researchers then independently completed line-by-line coding of interview transcripts before collaborating to develop consensus regarding key themes and interpretations. RESULTS: Nine families were enrolled in the study. We identified five main themes that enhanced family resilience: (1) social support networks; (2) factors fostering children's development; (3) access and connection to nature; (4) having a space of one's own; and (5) access to social services and community resources. CONCLUSIONS: In the context of additional stresses related to the COVID-19 pandemic, resilient behaviours and strategies for families were identified. The creation or development of networks of intra- and inter-community bonds; the promotion of accessible parenting, housing, and other social services; and the conservation and expansion of natural environments may support resilience and health.

Experiences of Living With the Nonmotor Symptoms of Parkinson's Disease: A Photovoice Study.

BACKGROUND: Nonmotor symptoms (NMSs) are frequently experienced by people with Parkinson's disease (PD) and are often perceived as their most bothersome symptoms. However, these remain poorly understood with suboptimal clinical management. These unmet needs are an important determinant of health-related quality of life (QoL) in PD. OBJECTIVE: The aim of this study was to gain insights into the experience of living with the NMS of PD in real-time using participatory action methodology. METHOD: Using the photovoice method, 14 people with PD took photographs to document their experiences of living with the NMS of PD. They composed corresponding written narratives to capture the impact of NMS on their daily activities and QoL. In total, 152 photographs and corresponding narratives were analysed using thematic analysis with an inductive approach. RESULTS: Four interrelated themes were identified. Emotional well-being and sense of self encompassed a process of adjustment to living with PD. Engaging in valued activities, adopting a positive mindset and utilising coping strategies were thought to enhance confidence and self-esteem. Social support and societal awareness highlighted the importance of supportive relationships and socialising to aid participation and avoid isolation. Barriers to social engagement included the unpredictability of NMS and nonvisible NMS being neglected or misunderstood. CONCLUSION: Findings demonstrated the far-reaching impact of nonmotor aspects of PD on emotional, occupational and social dimensions. These needs could be addressed through person-centred and comprehensive approaches to care. PATIENT OR PUBLIC CONTRIBUTION: This study utilised a participatory research approach allowing participants to choose the subjects that mattered to them and how to present their results. Additionally, a group workshop was held with people with PD, their family members and healthcare professionals to guide theme development.

Using photovoice to generate solutions to improve food security among families living in remote Aboriginal and/or Torres Strait Islander communities in Australia.

The right to food security has been recognised internationally, and nationally in Australia by Aboriginal Community Controlled Health Organisations. This study aims to explore food (in)security and solutions for improvement of food security in remote Aboriginal and/or Torres Strait Islander communities in Australia, from the perspective of caregivers of children within the context of the family using photovoice. Participants took part in workshops discussing participant photographs of food (in)security, including solutions. Themes and sub-themes with associated solutions included traditional food use, sharing as a part of culture, the cost of healthy food, energy and transport, and housing and income. Community leaders used these data in setting priorities for advocacy to improve food security in their communities.

Evaluation of environmental features that support breastfeeding: A photovoice study.

The United Kingdom (UK) has some of the lowest breastfeeding rates in the world, and Stoke-on-Trent has some of the lowest breastfeeding rates and highest infant mortality rates in the UK. Vicarious experience of formula feeding, formula feeding culture, and a lack of physical environments to support breastfeeding are known barriers to uptake and maintenance. Improving physical environments and increasing the visibility of breastfeeding in public would help to challenge these barriers. This research employs a participatory approach to understand the facilitators and barriers to breastfeeding in public. Nine breastfeeding peer supporters were recruited as co-researcher for a photovoice study. Co-researchers collated images of features in environments which they felt either supported or acted as a barrier to public breastfeeding. An analysis workshop was held to review the data collected and produce collaboratively agreed findings. Various environmental features were highlighted as facilitators to breastfeeding including family rooms, welcoming signage, supportive staff members, and displays of information about breastfeeding. In addition, poorly designed family rooms, lack of inclusivity within breastfeeding spaces, breastfeeding spaces within toilets and a lack of information were barriers to public breastfeeding. This research illustrates that while some environments are well designed to support breastfeeding many others are not. Environments often lack basic provision and/or make token gestures towards breastfeeding support, such as welcome signage, without providing the infrastructure needed to support breastfeeding. More education about breastfeeding friendly spaces and resources for putting this information into practice are needed for environment owners, managers, and policy makers.

When I can be my whole authentic self, I feel safe and know that I belong: a photovoice study exploring what culturally safe pregnancy care is to Karen women of refugee background in Victoria, Australia.

OBJECTIVES: Inequitable pregnancy care experiences and outcomes disproportionately affect refugee background women in Australia. Culturally safe care is essential for achieving health equity, however, cultural safety can only be determined by the person receiving care. To our knowledge, women of refugee background in Australia are yet to be asked what culturally safe pregnancy care is to them. Specifically, this study aimed to explore what culturally safe pregnancy care is to Karen women (from Burma) of refugee background. DESIGN: A photovoice study founded on community-based participatory research principles was undertaken with a Karen community of refugee background living in Victoria, Australia. A community advisory group was established, guiding study design and conduct. Five S'gaw Karen-speaking women with experience of pregnancy care in Australia were invited to take photos within their community. Participants shared their photos and stories with each other in four online discussion groups. RESULTS: Reflexive thematic analysis guided by a critical constructionist lens developed three themes: Building foundations for belonging; cultivating reciprocal curiosity; and storytelling as an expression of self and shared power. These themes sit within the overarching theme When I can be my whole authentic self, I feel safe and know that I belong. CONCLUSION: When Karen women can embrace their cultural and spiritual identity without fear of discrimination, including racism, culturally safe pregnancy care is possible. This study contributes to the design and delivery of maternity services by providing insights that can enhance equitable and culturally safe pregnancy care for Karen women of refugee background.

Capturing the HIV-related social exclusion practices experienced by key populations through photovoice: an interpretative phenomenological study.

BACKGROUND: Key populations are defined as groups that are susceptible to HIV, including Men Sex with Men (MSM), Transgender (TG), Persons who Inject Drug (PID), and Female Sex Worker (FSW). These key populations groups are among the fastest-growing populations in Indonesia. These vulnerable groups are ostracized by society and health services, which makes it difficult to get treatment. This project was carried out to investigate the different experiences and perspectives of these key populations in facing and addressing social and spiritual exclusion. METHODS: A qualitative phenomenological study using photovoice was carried out from July to December 2022. Key populations comprising MSM, TG, PID, and FSW were recruited from community-based peer groups in West Bandung Regency using snowball sampling. This was followed by the Photovoice stages, from workshops to focus group discussions and interviews with audio recordings. Furthermore, thematic data analysis was carried out by interpretative participant narratives and photographs supported by Atlas.ti software. RESULT: Eighteen participants comprising four MSM, five TG, four PIDs, and five FSWs participated in this research. Among these eighteen participants, six were HIV-negative, including 3 PIDs and 3 FSWs, while the remaining were positive. The analysis of the collected data identified four main themes: 1) limited access like unequal treatment, disadvantage, and harassment, 2) social and spiritual impact, 3) coping mechanisms, and 4) self-reflection through photovoice. These results showed that social exclusion occurred in an environment where community values, beliefs, and norms dehumanised these key populations, and where removal of support and care was prominent. Despite these challenges, participant resilience was evidenced by using internal resources and peer support as coping mechanisms. The participants considered photovoice as a tool to foster self-confidence and self-awareness through a reflective process. CONCLUSIONS: The findings of this study highlight the emphasis on participants' openness in sharing their experiences, which can build empathy and promote a more inclusive community in HIV prevention efforts. This research findings can be used to inform HIV policy and practice and inclusion of these key populations in the community. We advocate making the photovoice efforts accessible to a wider audience through exhibitions and various media.

Traumatised Nurses' Desired Support Needs for Continued Recovery After the COVID-19 Pandemic: A Qualitative Descriptive Study Utilising Photovoice.

AIMS: The aims of this study were to describe the experiences of nurses in the aftermath of the COVID-19 pandemic and to explore nurses' current desired support needs. DESIGN: This study used a qualitative descriptive design. METHODS: This study was conducted in the Southeastern United States at an academic health system encompassing acute care hospitals and outpatient speciality clinics. Thirteen nurses were interviewed in August and September of 2023 in five small groups of two or three nurses. Photovoice was used for data collection and each nurse submitted two photographs. Data were analysed utilising conventional content analysis, with transcripts and photograph analysis occurring concurrently. RESULTS: Three themes were identified: (1) organisational turmoil, (2) personal traumatisation and transitions and (3) striving for revival and renewal. A conceptual model illustrating the three themes and their relationships was developed to depict study findings. CONCLUSION: Nurses were impacted by organisational factors, such as staffing issues and lack of support, and personally through psychological trauma that has remained challenging. Nurses found revival and renewal in their personal lives, but still desire continued improvement in organisational factors to enhance their well-being in ways not currently being addressed to allow for full recovery. Findings from this study are pertinent for healthcare organisations and leaders to develop organisational changes and mental health solutions to support nurse well-being. IMPLICATIONS FOR THE PROFESSION: The prioritisation of nurse well-being is critical for the nursing profession and healthcare organisations. Organisational improvements and the implementation of support resources are urgently needed to aid in nurse recovery, nurse retention and to ensure patients receive quality care. IMPACT: This study identified nurses' struggles 3 years after the beginning of the COVID-19 pandemic, highlighting the ongoing need to provide resources and interventions that support nurse well-being. Our findings offer nurses' descriptions of their experiences and support needs for organisations and healthcare leaders to consider in the future. REPORTING METHOD: Standards for Reporting Qualitative Research (SRQR) Checklist. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Insight into the experiences of caregivers of older adults in long-term care homes: A photovoice study.

AIMS: To explore the lived experiences of caregivers of people living in long-term care (LTC) homes during the initial phases of the COVID-19 pandemic and potential supports and resources needed to improve caregivers' quality of life. BACKGROUND: Carers (or care partners) of adults in LTC contribute substantially to the health and well-being of their loved ones by providing physical care, emotional support and companionship. Despite their critical role, little is known about how caregivers have been impacted by the pandemic. DESIGN: An interpretive descriptive approach that incorporated the photovoice method was used. METHODS: Using a purposive sampling strategy, six family carers in Ontario, Canada were recruited between September and December 2021. Over a 4-week period, caregivers took pictures depicting their experience of the pandemic that were shared in a virtual focus group. Visual and text data were analysed using thematic analysis with an inductive approach. FINDINGS: Caregivers expressed feelings of frustration, confusion and joy. Emerging themes included: (i) feeling like a 'criminal' amidst visitor restrictions and rules; (ii) experiencing uncertainty and disappointment in the quality of care of long-term care homes; (iii) going through burnout; and (iv) focusing on small joys and cherished memories. CONCLUSIONS: The combination of visual and textual methods provided unique insight into the mental distress, isolation and intense emotional burdens experienced by caregivers during the pandemic. IMPACT: Our findings underscore the need for LTC organizations to work in unison with caregivers to optimize the care of residents and support the mental health of caregivers. REPORTING METHOD: This work adhered to the consolidated criteria for reporting qualitative research (COREQ) checklist. PUBLIC CONTRIBUTIONS: The caregivers included in the study were involved in the co-creative process as active contributors informing the design and validation of the codes and themes.

Exploring hospital mealtime experiences of older inpatients, caregivers and staff using photovoice methods.

AIM: To gather and understand the experience of hospital mealtimes from the perspectives of those receiving and delivering mealtime care (older inpatients, caregivers and staff) using photovoice methods to identify touchpoints and themes to inform the co-design of new mealtime interventions. METHODS: This study was undertaken on acute care wards within a single metropolitan hospital in Brisbane, Australia in 2019. Photovoice methods involved a researcher accompanying 21 participants (10 older patients, 5 caregivers, 4 nurses and 2 food service officers) during a mealtime and documenting meaningful elements using photographs and field notes. Photo-elicitation interviews were then undertaken with participants to gain insight into their experience. Data were analysed using inductive thematic analysis, involving a multidisciplinary research team including a consumer. RESULTS: Themes were identified across the three touchpoints: (1) preparing for the meal (the juggle, the anticipation), (2) delivering/receiving the meal (the rush, the clutter and the wait) and (3) experiencing the meal (the ideal, pulled away and acceptance). Despite a shared understanding of the importance of meals and shared vision of 'the ideal' mealtime, generally this was a time of tension, missed cares and dissatisfaction for staff, patients and caregivers. There was stark contrast in some aspects of mealtime experience, with simultaneous experiences of 'the rush' (staff) and 'the wait' (patients and caregivers). There was an overwhelming sense of acceptance and lack of control over change from all. CONCLUSIONS: This study identified themes during hospital mealtimes which have largely gone unaddressed in the design of mealtime interventions to date. This research may provide a framework to inform the future co-design of mealtime interventions involving patients, caregivers and multidisciplinary staff, centred around these key touchpoints. PRACTICE IMPLICATIONS: Mealtimes are experienced differently by patients, caregivers, nurses and food service officers across three key touchpoints: preparing for, delivering/receiving and experiencing the meal. Improving mealtime experiences therefore necessitates a collaborative approach, with co-designed mealtime improvement programs that include specific interventions focusing each touchpoint. Our data suggest that improvements could focus on reducing clutter, clarifying mealtime roles and workflows and supporting caregiver involvement. IMPACT: What problem did the study address? Mealtimes are the central mechanism to meet patients' nutritional needs in hospital; however, research consistently shows that many patients do not eat enough to meet their nutritional requirements and that they often do not receive the mealtime assistance they require. Interventions to improve hospital mealtimes have, at best, shown only modest improvements in nutritional intake and mealtime care practices. Gaining deeper insight into the mealtime experience from multiple perspectives may identify new opportunities for improvement. What were the main findings? Patients, caregivers and staff have shared ideals of comfort, autonomy and conviviality at mealtimes, but challenges of complex teamwork and re-prioritisation of mealtimes in the face of prevailing power hierarchies make it difficult to achieve this ideal. There are three discrete touchpoints (preparing for, delivering/receiving and experiencing the meal) that require different approaches to improvement. Our data suggests a need to focus improvement on reducing clutter, clarifying mealtime roles and workflows and supporting caregivers. Where and on whom will the research have an impact? The research provides a framework for multidisciplinary teams to begin co-designing improvements to mealtime care to benefit patients, caregivers and staff, while also providing a method for researchers to understand other complex care situations in hospital. REPORTING METHOD: This manuscript is written in adherence with the Standards for Reporting Qualitative Research. PATIENT OR PUBLIC CONTRIBUTION: Patients and caregivers were involved in the conception and design of the study through their membership of the hospital mealtime reference group. A consumer researcher (GP) was involved in the team to advise on study conduct (i.e. recruitment methods and information), data analysis (i.e. coding transcripts), data interpretation (i.e. review and refinement of themes) and manuscript writing (i.e. review and approval of final manuscript).

Using Online Photovoice to Explore Food Decisions of Families on Low Income: Lessons Learnt During the COVID-19 Pandemic.

The method of photovoice has been previously used to effectively engage with socioeconomically disadvantaged groups and explore their eating behaviours. In this methodological article, we draw on our experiences from using photovoice through online interviews with families on low income about their food decisions. A purposive recruitment approach targeted parents of children 2-17 years old who lived on a tight budget across the island of Ireland. Participants provided demographic information and were invited to take photographs of food-related decisions and activities for 1 week during the COVID-19 lockdown. The photographs were then discussed through an online communication platform to generate qualitative data. A total of 28 parents participated in the photo-elicited interviews and shared a total of 642 photographs of factors that influenced their food decisions. Following the interviews, the researchers documented their reflections which focused on (1) participants' engagement with the online photo-elicitation and (2) practical aspects around participant consent and data safety. The participants in our study engaged well with the online photovoice method and shared a variety of photos which provided ample material to facilitate the conversations around their food environment and its impact on their food decisions. Our experiences can provide novel insights into using photovoice in a virtual environment and useful considerations around ethics and data collection for researchers who work with socioeconomically disadvantaged groups. Photo-elicited interviews offer an engaging and flexible data collection technique that can highlight issues informing future priorities of healthcare policy.

Navigating Both Roles: A Photovoice Exploration of the Young Adult Balancing Daughterhood and Caregiving for a Mother With Young-Onset Dementia.

Young adults thrust into the role of caregiving for parents with young-onset dementia (YOD) face unique challenges during their formative years. While existing research acknowledges the crucial role of young adult caregivers, a gap persists in understanding how this group experiences and redefines their identity amidst these circumstances, along with the psychological and societal challenges encountered. This knowledge deficit hinders the identification of suitable social support, adversely affecting the personal growth and well-being of these young adult caregivers. In this single-case study, we used a combination of a semi-structured interview and photovoice to explore the journey of a 19-year-old caregiver, Alice, whose mother had been diagnosed with dementia in the preceding 3 years. Through this unique perspective, we aimed to illuminate how caregiving for a mother with YOD may profoundly redefine familial roles and relationships. Over 3 months, Alice captured significant life moments through photography, selecting meaningful images for bi-weekly meetings. These images served as pivotal themes, triggering in-depth conversations during subsequent interviews to provide nuanced insights into her life experiences. Findings reveal four major themes faced by a young caregiver: (1) challenges adapting to an unexpected role, (2) navigating the complex emotional terrain of losing a loved one to YOD, (3) prioritizing the well-being of the healthy parent, and (4) expressing a profound desire for both informal and formal support. These results underscore the intricate identity and emotional challenges faced by young adult caregivers, emphasizing the urgency of addressing their unique needs through family-centered systemic support services.

The Eternal Present: A Photovoice Study of the Experience of Geriatrics Residents During the COVID-19 Pandemic.

During the COVID-19 pandemic, medical residents had the task of being the frontline of the response, being exposed to high risk of infection, increased clinical duty, and long and irregular working hours in highly restricted environments, increasing their levels of stress. We sought to expose the experiences of a group of geriatrics residents during this period of change in their professional and personal lives through the photovoice methodology. Thirteen participants were recruited and had 2 weeks to take photographs. The photographs were discussed in group meetings; the content of the conversations was transcribed and analyzed using interpretive description. Sixteen themes were identified. They were divided into personal life (11 themes) and life as a resident (5 themes). Adaptation was the main theme that came into discussion. The photographs and themes show how life changed for the participants, having a feeling of isolation, especially from their families, and highlighting their experiences as a team and community. While the pandemic, particularly at its beginning, was a period of uncertainty and a heavy load of work, it also provided learning and experience to this group of young physicians, which should not hide the fact that mental health concerns and burnout were a common situation. An online gallery was created which is publicly accessible.

Learning to Communicate: A Photovoice Study With Intensive Care Residents During Night Shifts in the Intensive Care Unit.

This study explored the learning experiences of intensive care residents in an intensive care unit (ICU) during night shifts and the development of communication skills in this community of practice. This action research qualitative study used the photovoice method in four workshops. A group of nine residents shared their learning experiences and collectively analyzed, built, and presented proposals to improve residents' communication skills in the community of practice in which they become intensivists. Participatory thematic analysis was conducted. Students concluded that night shifts in the ICU offered a perfect situational learning environment for communication with one-on-one resident-teacher relationships, less administrative work, and more resident responsibility, improving intensivist identity. Role models, reflective thinking, and teamwork are essential for fostering communication skills among intensivist community members and are all trainable. The results and student suggestions were presented to teachers and decision-makers in the clinic. These photovoice strategies developed students' abilities to share their critical views and suggestions with decision-makers for subsequent implementation, enhancing their confidence in their learning process, strengthening trust-based relationships with teachers, and improving future intensivists' practice communities.

Exploring the Methodological Benefits and Challenges of Utilising a Photovoice Methodology With Individuals in Recovery From Problem Substance Use.

Photovoice is a type of visual research method which supports participants to reflect upon their experiences by capturing digital images. It is a methodology that is routinely used with groups that could be considered vulnerable, as a way of allowing participants to tell their stories for themselves. This article details the process of conducting a Photovoice study with individuals in recovery from problem substance use and reflects on the methodological benefits and challenges of utilising a visual research methodology with this population. Researchers wishing to conduct a Photovoice study with individuals in recovery should be mindful of striking a delicate balance between respecting an individual's autonomy and ensuring their wellbeing. Although ethically complex, Photovoice is an ideal method for research with this population as it allows participants to convey meaning and introduce narratives for themselves in an engaging way.

Photos Sculpt the Stories of Youth: Using Photovoice to Holistically Capture the Lived Experiences and Pain of Youth Who Underwent Spinal Fusion Surgery.

Spinal fusion surgery is one of the most common major surgical procedures in youth. Adolescent idiopathic scoliosis (AIS) is the most frequent reason for corrective spinal fusion. AIS (∼25%-47% of cases) and spinal fusion surgeries are associated with pain, including the development of new onset chronic pain for up to 15% of youth. This research used photovoice approaches to explore the journeys of youth from before, during, and after spinal fusion surgery, to demonstrate their experiences both of and beyond pain. Twenty participants were recruited from a previous study conducted by the senior author's lab. Participants captured photos/videos in their daily life (Phase 1); collected previously taken photos/videos from before/during/after their surgery (Phase 2); and participated in individual interviews to reflexively discuss the meaning behind photos/videos (Phase 3). Before interviews, a questionnaire was administered to assess pain characteristics. Nineteen girls/women with scoliosis and one boy/man with kyphosis (12-19 years old, Mage = 16 years) participated; they identified as white (80%), other (15%), and Southeast Asian (5%). The researchers used a reflexive thematic analysis approach, which generated five themes: (1) body aesthetic versus machine; (2) expectations and anticipation of surgery/outcomes; (3) desire of normalcy and freedom; (4) navigating a hoped-for positive surgery experience; and (5) the journey sculpts identity formation and sense of self. Findings support youth advocacy, underscoring the need to validate youth concerns and inform healthcare professionals of the importance of individualized care. Youth perspectives highlighted opportunities for optimizing surgery/healthcare experiences and the psychosocial impacts of scoliosis on body image and appearance.

Caring for the child with a tracheostomy through the eyes of their caregiver: A photovoice study.

PURPOSE: This qualitative descriptive study aimed to explore the daily experiences of caregivers of children with medical complexity with a tracheostomy at home. METHODS: This study used photovoice, a participatory action research methodology. Adult English-speaking caregivers of children with a tracheostomy, living in Texas, with access to a smartphone were recruited. Photographs taken by participants and an interview guide were used to guide semi-structured interviews with caregivers. RESULTS: Eight participants were recruited. After analyzing photographs and caregiver interviews, four main themes were identified: role transition, daily challenges, finding support, and thriving in the new normal. CONCLUSIONS: Caregivers take on multiple roles, including providing medical care, advocating for their children, and educating others. While facing emotional challenges such as guilt, fear, and exhaustion, caregivers rely on external support systems, emphasizing the need for nurses and healthcare providers to provide comprehensive support and improve the accessibility of home nursing services. PRACTICE IMPLICATIONS: The findings of this study can inform nurse-led interventions and advocacy efforts aimed at supporting marginalized children with medical complexity with a tracheostomy and their families. These efforts may include enhancing communication and collaboration between families, healthcare workers, and the public, providing comprehensive, proactive support for caregivers, and improving access to home nursing services.

The Way I See It: Older Adults with Mental Illness Share Their Views of Community Life Using Photovoice.

The importance of community involvement for both older adults and individuals coping with mental illness is well documented. Yet, barriers to community integration for adults with mental illness such as social stigma, discrimination, and economic marginalization are often exacerbated by increased health and mobility challenges among older adults. Using photovoice, nine older adults with mental illness represented their views of community in photographs and group discussions over a six-week period. Participant themes of community life included physical spaces, valued social roles, and access to resources in the community. Themes were anchored by older adults' perceptions of historical and cultural time comparisons between 'how things used to be' and 'how things are now.' Barriers to community integration were often related to factors such as age, mobility, and resources rather than to mental health status. Program evaluation results suggest photovoice can promote self-reflection, learning, and collaboration among older adults with mental illness.

Community Participation Challenges for Young Adults with Autism Spectrum Disorders During COVID-19 A Photovoice Study.

Autistic Individuals with or without co-occurring Mental Health Conditions Experience Challenges with Community Participation that can Affect Quality of life. These Challenges Involve, but are not Limited to, Transportation, Finances, Accessibility, Attitude towards Participation, and Infrastructure Issues. COVID-19 Added a new Layer of Community Participation Barriers for all Individuals, Especially Autistic Individuals. The purpose of this study is to understand the perceived community participation barriers and facilitators encountered by autistic individuals during a public health crisis using the Photovoice methodology. The study will compare these perceptions of autistic individuals with and without co-occurring mental health conditions during a public health crisis to determine if any distinctions can be determined. Photovoice, an established qualitative outreach methodology, was the foundation for the methods. Participants completed a narrative answering the question "what is a barrier or facilitator to your community participation?" Data were analyzed using grounded theory. Seventeen autistic participants with a mean age of 23 completed the Photovoice study. Eleven (65%) reported at least one co- occurring mental health condition. Data analysis resulted in two major themes COVID-19 and Transportation; and six subthemes access, safety, technology, leisure, shared experiences, and sensory. Autistic individuals with and without co-occurring mental health conditions chose to identify barriers more than facilitators. Participants without co-occurring mental health conditions viewed COVID-19 as a facilitator almost twice as often as those without. Participants with co-occurring mental health conditions reported transportation more as a barrier than those without. In this study conducted during COVID-19 regulations, autistic individuals identified COVID-19 and transportation as the primary barriers to community participation. COVID-19 was identified as both a barrier and a facilitator. Autistic individuals identified that COVID-19 enabled more on-line participation. Autistic individuals with co-occurring mental health conditions can experience a greater increase in symptoms when daily routines and participation are affected. Disruption and changes in participation for the autistic community during the COVID-19 pandemic can have future implications on this population's ability to reintroduce themselves into community participation. Identified facilitators; technology, shared experiences, and leisure are useful tools to combat the participation barriers.