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1.
J Gen Intern Med ; 39(11): 2033-2040, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38438635

RESUMO

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.


Assuntos
Negro ou Afro-Americano , Pesquisa Qualitativa , Veteranos , Humanos , Feminino , Masculino , Veteranos/psicologia , Pessoa de Meia-Idade , Negro ou Afro-Americano/psicologia , Estados Unidos , Adulto , Fotografação , Redução de Peso , Idoso , Programas de Redução de Peso/métodos , Obesidade/terapia , Obesidade/etnologia , Obesidade/psicologia , United States Department of Veterans Affairs
2.
Cancer Control ; 31: 10732748241292567, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39400608

RESUMO

INTRODUCTION: Effective communication and messaging strategies are crucial to raise awareness and support participants' efforts to adhere to lung cancer screening (LCS) guidelines. Health messages that incorporate images are processed more efficiently, and given the stigma surrounding lung cancer and cigarette smoking, emphasis must be placed on selecting imagery that is engaging to LCS-eligible individuals. This exploratory study aimed to identify person-centered themes surrounding LCS imagery. MATERIALS AND METHODS: This qualitative study leveraged a modified photovoice approach and interviews to define descriptive themes about LCS imagery. Study participants eligible for annual LCS who had a CT scan within 12 months were asked to select three images and participate in a semi-structured interview about photo selection, likes, and dislikes. Participants were also asked their opinions about images from current LCS communications featuring matches, smoke, and cigarettes. Data were analyzed using an inductive thematic approach. RESULTS: Data saturation was reached after thirteen individuals completed the photovoice activity; each participant selected three pictures resulting in a total of 39 images representing LCS. Over half (54%) of images selected contained lungs and only 4 (10%) contained smoking-related elements. Five main themes emerged: 1) images should focus on good news and early detection; 2) people should be relatable; 3) pictures with lungs can dually support lung health or invoke fear; 4) opportunity for education or awareness; and 5) should not be judgmental and induce stigma. CONCLUSIONS: These findings suggest that LCS imagery should not contain negative or stigmatizing elements but instead be relatable and educational. This information can inform communication and messaging interventions and strategies for future LCS participation, awareness, and educational research.


Assuntos
Detecção Precoce de Câncer , Neoplasias Pulmonares , Humanos , Neoplasias Pulmonares/diagnóstico por imagem , Neoplasias Pulmonares/psicologia , Neoplasias Pulmonares/diagnóstico , Detecção Precoce de Câncer/psicologia , Detecção Precoce de Câncer/métodos , Masculino , Feminino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Idoso , Fotografação/métodos
3.
Psychooncology ; 33(9): e9306, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-39191639

RESUMO

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.


Assuntos
Sobreviventes de Câncer , Neoplasias , Pais , Fotografação , Pesquisa Qualitativa , Humanos , Adolescente , Sobreviventes de Câncer/psicologia , Feminino , Criança , Masculino , Pais/psicologia , Neoplasias/psicologia , Neoplasias/terapia , Adaptação Psicológica
4.
Int J Equity Health ; 23(1): 62, 2024 Mar 19.
Artigo em Inglês | MEDLINE | ID: mdl-38504281

RESUMO

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.


Assuntos
COVID-19 , Resiliência Psicológica , Criança , Humanos , Saúde da Família , Pandemias , Poder Familiar/psicologia
5.
Can J Neurol Sci ; : 1-11, 2024 Oct 09.
Artigo em Inglês | MEDLINE | ID: mdl-39380200

RESUMO

OBJECTIVE: Our aim was to explore the experiences of individuals receiving emergency department (ED) care for acute headaches. BACKGROUND: Patients with headache exacerbations commonly present to EDs. This study explored the experiences of adult patients during the exacerbation period, specifically using photovoice. METHODS: Recruited from two urban EDs in Alberta, Canada, participants with primary headaches took photographs over 3-4 weeks and subsequently completed a 60-90 minute, one-on-one, in-person photo-elicitation interview. Interviews were audio recorded, transcribed and thematically analyzed alongside photographs. RESULTS: Eight participants (six women) completed the study. The average age was 42 years (standard deviation: 16). Five themes emerged: (1) the struggle for legitimacy in light of the invisibility of their condition; (2) the importance of hope, hopelessness and fear in the day-to-day life of participants; (3) the importance of agency and becoming "your own advocate"; (4) the struggle to be and be seen as themselves despite the encroachment of their headaches; and (5) the realities of "good" and "bad" care in the ED. Participants highlighted examples of good care, specifically when they felt seen and believed. Additionally, some expressed the acute care space itself being a beacon of hope in the midst of their crisis. Others felt dismissed because providers "know it's not life or death." CONCLUSIONS: This study highlighted the substantial emotional impact that primary headaches have on the lives of participants, particularly during times of exacerbation and while seeking acute care. This provides insight for acute care settings and practitioners on how to effectively engage with this population.

6.
Health Expect ; 27(3): e14124, 2024 06.
Artigo em Inglês | MEDLINE | ID: mdl-38924637

RESUMO

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.


Assuntos
Adaptação Psicológica , Doença de Parkinson , Fotografação , Qualidade de Vida , Humanos , Doença de Parkinson/psicologia , Feminino , Masculino , Idoso , Pessoa de Meia-Idade , Apoio Social , Atividades Cotidianas , Autoimagem , Idoso de 80 Anos ou mais , Pesquisa Qualitativa
7.
Health Expect ; 27(5): e70051, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-39369276

RESUMO

BACKGROUND: Youth have been uniquely affected by the COVID-19 pandemic. Despite high rates of COVID-19 infection, youth had one of the lowest vaccine uptake rates. Certain characteristics can affect vaccine uptake, such as mental health and substance use, but it is important to understand uptake for an effective response to pandemics. OBJECTIVE: This study examined the perspectives of youth with mental health or substance use concerns on COVID-19 vaccine confidence, hesitancy and overall COVID-19 vaccine perspectives. METHODS: Using photovoice, a community-based participatory research method, a sample of 27 youth aged 14-24 years participated in a series of photography workshops and focus groups. Participants submitted final photographs for discussion. Focus groups were recorded, transcribed and thematically analysed. RESULTS: Four themes were generated: (1) Youth deciphered the vaccine discourse in a changing information landscape; (2) mixed perspectives of families, friends and loved ones influenced the vaccine journey; (3) complex societal influences affected views and decisions around the COVID-19 vaccine; and (4) youth navigated their vaccine journeys through first- and second-hand experiences. The four themes and subthemes highlight the evolution of youth's journeys with the COVID-19 vaccine over the course of the pandemic and into the late-pandemic period. CONCLUSIONS: Youth with mental health or substance use challenges navigated a complex environment during the COVID-19 pandemic. The wide variety of factors influencing vaccine perspectives should be taken into account in public health messaging and future research on youth vaccine uptake. Youth-led and youth-engaged research can help solicit rich and meaningful perspectives of young people on important public health issues. PATIENT OR PUBLIC CONTRIBUTION: This was a youth-led study. A youth research analyst conducted the study activities together with the support of a youth advisory group, an adult photographer with lived experience, and a scientific team.


Assuntos
Vacinas contra COVID-19 , COVID-19 , Grupos Focais , Fotografação , Humanos , Adolescente , Feminino , Masculino , Adulto Jovem , COVID-19/prevenção & controle , Pesquisa Participativa Baseada na Comunidade , Hesitação Vacinal/psicologia , SARS-CoV-2 , Transtornos Relacionados ao Uso de Substâncias/psicologia
8.
BMC Public Health ; 24(1): 785, 2024 Mar 13.
Artigo em Inglês | MEDLINE | ID: mdl-38481178

RESUMO

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.


Assuntos
Povos Aborígenes Australianos e Ilhéus do Estreito de Torres , Serviços de Saúde do Indígena , Humanos , Austrália , Segurança Alimentar , Saúde Pública
9.
Appetite ; 199: 107397, 2024 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-38735307

RESUMO

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.


Assuntos
Aleitamento Materno , Fotografação , Humanos , Aleitamento Materno/psicologia , Feminino , Reino Unido , Adulto , Apoio Social , Lactente , Meio Ambiente , Grupo Associado , Recém-Nascido , Masculino
10.
Ethn Health ; 29(6): 720-744, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38867355

RESUMO

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.


Assuntos
Pesquisa Participativa Baseada na Comunidade , Fotografação , Refugiados , Humanos , Feminino , Refugiados/psicologia , Gravidez , Adulto , Vitória , Mianmar/etnologia , Cuidado Pré-Natal , Assistência à Saúde Culturalmente Competente , Competência Cultural
11.
Reprod Health ; 21(1): 107, 2024 Jul 15.
Artigo em Inglês | MEDLINE | ID: mdl-39004733

RESUMO

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.


Assuntos
Infecções por HIV , Pesquisa Qualitativa , Pessoas Transgênero , Humanos , Masculino , Infecções por HIV/prevenção & controle , Infecções por HIV/psicologia , Feminino , Adulto , Pessoas Transgênero/psicologia , Isolamento Social/psicologia , Indonésia , Profissionais do Sexo/psicologia , Homossexualidade Masculina/psicologia , Fotografação , Abuso de Substâncias por Via Intravenosa/psicologia , Estigma Social , Adulto Jovem , Minorias Sexuais e de Gênero/psicologia
12.
J Adv Nurs ; 2024 Sep 10.
Artigo em Inglês | MEDLINE | ID: mdl-39253764

RESUMO

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.

13.
J Adv Nurs ; 80(3): 1084-1096, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37775476

RESUMO

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.


Assuntos
Cuidadores , Assistência de Longa Duração , Humanos , Idoso , Cuidadores/psicologia , Assistência de Longa Duração/psicologia , Pandemias , Qualidade de Vida , Ontário , Pesquisa Qualitativa
14.
J Clin Nurs ; 33(5): 1906-1920, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38284486

RESUMO

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).


Assuntos
Cuidadores , Pacientes Internados , Humanos , Hospitais , Ingestão de Alimentos , Refeições
15.
Qual Health Res ; 34(3): 171-182, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37933809

RESUMO

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.


Assuntos
COVID-19 , Pandemias , Criança , Humanos , Pré-Escolar , Adolescente , Controle de Doenças Transmissíveis , Comportamento Alimentar , Coleta de Dados
16.
Qual Health Res ; : 10497323241244986, 2024 Jun 17.
Artigo em Inglês | MEDLINE | ID: mdl-38885496

RESUMO

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.

17.
Qual Health Res ; 34(10): 910-925, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38329300

RESUMO

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.


Assuntos
Fotografação , Escoliose , Fusão Vertebral , Humanos , Feminino , Adolescente , Escoliose/cirurgia , Escoliose/psicologia , Masculino , Fusão Vertebral/psicologia , Criança , Adulto Jovem , Dor Crônica/psicologia , Pesquisa Qualitativa , Cifose/psicologia , Cifose/cirurgia , Entrevistas como Assunto
18.
Qual Health Res ; 34(8-9): 783-797, 2024 07.
Artigo em Inglês | MEDLINE | ID: mdl-38238935

RESUMO

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.


Assuntos
Comunicação , Unidades de Terapia Intensiva , Internato e Residência , Fotografação , Pesquisa Qualitativa , Humanos , Feminino , Masculino , Aprendizagem , Adulto , Cuidados Críticos/psicologia
19.
Qual Health Res ; : 10497323241245340, 2024 Jul 18.
Artigo em Inglês | MEDLINE | ID: mdl-39025673

RESUMO

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.

20.
Qual Health Res ; 34(10): 883-894, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38205737

RESUMO

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.


Assuntos
Fotografação , Transtornos Relacionados ao Uso de Substâncias , Humanos , Transtornos Relacionados ao Uso de Substâncias/psicologia , Pesquisa Qualitativa , Feminino , Masculino , Narração , Projetos de Pesquisa , Adulto
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