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An integral part of understanding and then designing programs to reduce childhood cancer inequities includes adequate representation of people with cancer in research, including children. A scoping review was carried out to understand how cancer research is oriented toward inequities and to identify who has participated in childhood qualitative cancer research. A systematic search identified 119 qualitative studies that met inclusion criteria, with most studies taking place in high-income countries (n=84). Overall, data were lacking on social determinants of health at multiple levels-structural, household, child, and guardian. Only 29 studies reported on race and/or ethnicity, with the majority of those including predominantly or all white children. Six articles included socioeconomic information, and across most articles, attention was absent to the financial ramifications of cancer care. Limited reporting of sociodemographics highlights a broader issue of neglecting key demographics and social factors that contribute to inequities.
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INTRODUCTION: Of the family members providing care, in the United States over 5.4 million are young people (<18 years of age) and they are the caregivers receiving the least support overall. Given the need to support cancer survivors through a family-centered practice approach, this lack of support and intervention for young caregivers represents a substantial gap in cancer care. In this study, we will adapt a young caregivers intervention, YCare, with young caregivers in families affected by cancer in order to advance support for families in cancer settings. YCare is an intervention that improves the support young caregivers provide through a peer-engaged, multidisciplinary model but has previously not been studied in the cancer care setting. METHODS: Guided by the updated Consolidated Framework for Implementation Research (CFIR) we will engage stakeholders (i.e., young caregivers, cancer survivors, health care providers) using qualitative (i.e., one-on-one semi-structured interviews) and arts-based methods. Stakeholders will be recruited via cancer registries and community partners. Data will be analyzed descriptively using deductive (e.g., CFIR domains) and inductive (e.g., cancer practice settings) approaches. DISCUSSION: The results will indicate the critical components for adapting the YCare intervention to the cancer practice context including new intervention elements and key characteristics. Adapting YCare to a cancer context will address a critical cancer disparity issue.
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Sobreviventes de Câncer , Neoplasias , Humanos , Adolescente , Cuidadores , Pessoal de Saúde , Pesquisa Qualitativa , Neoplasias/terapiaRESUMO
Established in 2019, OTJR's Occupational Science Section provides a dedicated venue for showcasing empirical occupational science research and fostering translation of that research into occupational therapy practices. In this invited commentary, the first and second Associate Editors of the Occupational Science Section reflect on its early growth, connecting the foci of the Occupational Science Section to topics discussed at selected occupational science and occupational therapy conferences in 2022. The commentary concludes with a discussion of future possibilities for the Occupational Science Section as it moves forward.
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Terapia Ocupacional , Humanos , Publicações Periódicas como AssuntoRESUMO
Self-efficacy for managing injury may contribute to variation in clients' support needs after distal radius fracture (DRF). This study aimed to (a) explore associations between self-efficacy for managing injury and self-reported health and (b) compare qualitative descriptions of the self-management process and outcome between high and low self-efficacy groups. In this cross-sectional convergent mixed methods study, 31 adults aged 45 to 72 with a unilateral DRF completed patient-reported outcome measures and a semi-structured interview 2 to 4 weeks after discontinuing full-time wrist immobilization. Higher self-efficacy was moderately associated with better physical, mental, and social health. The High-Self-Efficacy group described self-directed behaviors to manage injury sequelae and more confidence in their ability to use their injured hand. They also described less disruptive physical and emotional symptoms and fewer participation restrictions compared with the Low-Self-Efficacy group. Findings suggest that occupational therapy practitioners should assess and address self-efficacy for managing DRF sequelae to support recovery.
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Fraturas do Rádio , Fraturas do Punho , Adulto , Humanos , Fraturas do Rádio/diagnóstico , Fraturas do Rádio/psicologia , Fraturas do Rádio/terapia , Autoeficácia , Estudos Transversais , MãosRESUMO
BACKGROUND: Biomedical models have limitations in explaining and predicting recovery after distal radius fracture (DRF). Variation in recovery after DRF may be related to patients' behaviors and beliefs, factors that can be framed using a lens of self-management. We conceptualized the self-management process using social cognitive theory as reciprocal interactions between behaviors, knowledge and beliefs, and social facilitation. Understanding this process can contribute to needs identification to optimize recovery. PURPOSE: Describe the components of the self-management process after DRF from the patient's perspective. STUDY DESIGN: Qualitative descriptive analysis. METHODS: Thirty-one adults aged 45-72 with a unilateral DRF were recruited from rehabilitation centers and hand surgeons' practices. They engaged in one semi-structured interview 2-4 weeks after discontinuation of full-time wrist immobilization. Data were analyzed using qualitative descriptive techniques, including codes derived from the data and conceptual framework. Codes and categories were organized using the three components of the self-management process. RESULTS: Participants engaged in medical, role, and emotional management behaviors to address multidimensional sequelae of injury, with various degrees of self-direction. They described limited knowledge of their condition and its medical management, naive beliefs about their expected recovery, and uncertainty regarding safe movement and use of their extremity. They reported informational, instrumental, and emotional support from health care professionals and a broader circle. CONCLUSIONS: Descriptions of multiple domains of behaviors emphasized health-promoting actions beyond adherence to medical recommendations. Engagement in behaviors was reciprocally related to participants' knowledge and beliefs, including illness and pain-related perceptions. The findings highlight relevance of health behavior after DRF, which can be facilitated by hand therapists as part of the social environment. Specifically, hand therapists can assess and address patients' behaviors and beliefs to support optimal recovery.
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Fraturas do Rádio , Fraturas do Punho , Adulto , Humanos , Facilitação Social , Comportamentos Relacionados com a Saúde , Fraturas do Rádio/terapiaRESUMO
In their published study, Jacobs and George examine how youth participation was enabled to advance the Adolescent and Youth Health Policy (AYHP) in South Africa. Using an expanded and adapted conceptual framework of youth participation to inform their work, their findings center on the complexities of youth participation including enablers and the challenges experienced in the South African context. Building upon their foundational work, in this commentary we suggest further insights for consideration to advance youth participation to inform equitable health policies, including the inclusion of youth with intersecting identities and critical reflection to further advance the adapted conceptual framework.
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Política de Saúde , Aprendizagem , Adolescente , Humanos , África do SulRESUMO
BACKGROUND: Children with disabilities have the right to participate in health research so their priorities, needs, and experiences are included. Health research based primarily on adult report risks misrepresenting children with disabilities and their needs, and contributes to exclusion and a lack of diversity in the experiences being captured. Prioritizing the participation of children with disabilities enhances the relevance, meaningfulness, and impact of research. METHODS: A scoping review was conducted to critically examine the participation of children with disabilities in qualitative health research. The electronic databases PubMed, PsychInfo, Embase, and Google Scholar were searched. Inclusion criteria included qualitative health studies conducted with children with disabilities, published between 2007 and 2020, and written in English. Articles were screened by two reviewers and the synthesis of data was performed using numeric and content analysis. RESULTS: A total of 62 studies met inclusion criteria. Rationales for including children with disabilities included child-focused, medical model of disability, and disability rights rationales. Participation of children with disabilities in qualitative health research was limited, with the majority of studies conducting research on rather than in partnership with or by children. Findings emphasize that children with disabilities are not participating in the design and implementation of health research. CONCLUSION: Further effort should be made by health researchers to incorporate children with a broad range of impairments drawing on theory and methodology from disability and childhood studies and collaborating with people who have expertise in these areas. Furthermore, an array of multi-method inclusive, accessible, adaptable, and non-ableist methods should be available to enable different ways of expression.
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Crianças com Deficiência , Adulto , Criança , Humanos , Pesquisa QualitativaRESUMO
BACKGROUND: Children are the focus of numerous health interventions throughout the world, yet the extent of children's meaningful participation in research that informs the adaptation, implementation, and evaluation of health interventions is not known. We examine the type, extent, and meaningfulness of children's participation in research in qualitative health intervention research. METHOD: A scoping study was conducted of qualitative published research with children (ages 6-11 years) carried out as part of health intervention research. Following Arksey and O'Malley's scoping study methodology and aligned with the PRISMA-ScR guidelines on the reporting of scoping reviews, the authors searched, charted, collated, and summarized the data, and used descriptive and content analysis techniques. Ovid MEDLINE was searched from 1 January 2007 to 2 July 2018 using the keywords children, health intervention, participation, and qualitative research. Study selection and data extraction were carried out by two reviewers independently. RESULTS: Of 14,799 articles screened, 114 met inclusion criteria and were included. The study identified trends in when children were engaged in research (e.g., post-implementation rather than pre-implementation), in topical (e.g., focus on lifestyle interventions to prevent adult disease) and geographical (e.g., high-income countries) focuses, and in qualitative methods used (e.g., focus group). While 78 studies demonstrated meaningful engagement of children according to our criteria, there were substantial reporting gaps and there was an emphasis on older age (rather than experience) as a marker of capability and expertise. CONCLUSIONS: Despite evidence of children's meaningful participation, topical, geographical, and methodological gaps were identified, as was the need to strengthen researchers' skills in interpreting and representing children's perspectives and experiences. Based on these findings, the authors present a summary reflective guide to support researchers toward more meaningful child participation in intervention research.
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Atenção à Saúde , Adulto , Criança , Humanos , Pesquisa QualitativaRESUMO
Background: Violence against school children is a prevalent global issue. Despite the high prevalence of school violence in Zambia, there is limited research on students with disabilities' experiences of school violence. Objectives: Guided by the socio-ecological model for bullying, the aim of this study was to understand students with disabilities' experiences of school violence in the Lusaka and Southern provinces of Zambia. Methods: A qualitative descriptive study was conducted with 14 purposively sampled boys (n = 6) and girls (n = 8) with disabilities. Data were generated using semi-structured interviews and child-friendly methods. Child-friendly methods were co-constructed with Zambian youth with disabilities in order to ensure cultural appropriateness and included vignettes, cartoon captioning, photograph elicitation, drawings, and sentence starters. Qualitative data were analysed by thematic analysis. Results: The themes illuminated that violence against students with disabilities occurs frequently but goes unaddressed. Moreover, students with disabilities were being blamed for causing the violence, and therefore, considered a risk to others. Participants reported that they turn to trusted teachers for support. Conclusion: This study illuminates the violence students with disabilities experience within the Zambian education system, with implications for school policies and programmes, peer education, and teacher training to create a safer education environment for students with disabilities.
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PURPOSE: Chronic pain and disability after musculoskeletal trauma support the need for non-biomedical perspectives to frame experiences of recovery. Self-management is a specific holistic lens with implications for improving health outcomes. This qualitative study explored how adults made meaning of self-management after distal radius fracture (DRF). METHODS: Thirty-one individuals aged 45-72 with a unilateral DRF participated in a semi-structured interview 2-4 weeks after discontinuing full-time wrist immobilization. Interviews were audio-recorded and transcribed, and constructivist grounded theory techniques were used to analyze the data. RESULTS: Participants made meaning of self-management as a process of "transitioning from hurting to healing," which occurred via three underlying processes. "Learning because of my injury" included gaining information for empowerment and understanding by physically living through the experience. "Working and hoping toward healing" involved taking active steps to recovery in the face of uncertainty. "Getting back to my normal self" comprised reconnecting to one's body and identity after injury. CONCLUSIONS: Participants' lived experiences overlapped with those of self-managing chronic conditions, highlighting the need to consider how individuals actively engage in their recovery after DRF. Findings suggest using supportive interventions to facilitate patients' understanding, activation, and engagement in meaningful activity after DRF.Implication for rehabilitationTo maximize health outcomes after distal radius fracture, clinicians should move beyond impairment remediation to supporting multiple dimensions of recovery, including emotional distress and functional limitations.Clinicians should routinely provide early and ongoing information, such as expected symptoms and recovery time frames, to minimize loss of control related to uncertainty.Clinicians should emphasize active interventions, such as collaborative goal setting and functional tasks, that engage patients in their own healing.Clinicians should support patients' early return to meaningful activity to maintain or restore connection to the body and identity.
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Fraturas do Rádio , Autogestão , Traumatismos do Punho , Adulto , Humanos , Fraturas do Rádio/terapia , Articulação do Punho , PunhoRESUMO
Background: Outcomes of using art in therapy overlap with goals of occupational therapy with older adults in long-term care, which include improving and maintaining health and well-being through engagement in occupations. There is a lack of evidence about how art activities could complement or inform occupational therapy. Purpose: The purpose of this scoping review is to map existing literature about how art activities are used in long-term care. Methods: Six electronic databases were searched. Fourteen studies met inclusion criteria and were analyzed to identify patterns and discrepancies. Findings: The analysis suggests art activities can contribute to well-being by improving mood, promoting communication and reminiscence, and supporting the development and deepening of social relationships. Implications: Occupational therapists should consider incorporating art activities as these offer therapeutic benefits and can be adapted to individual strengths and preferred type and level of participation.
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Assistência de Longa Duração , Terapia Ocupacional , Idoso , Comunicação , Humanos , Relações Interpessoais , Terapeutas OcupacionaisRESUMO
School violence is a global public health epidemic, with students with disabilities at a significantly greater risk than their non-disabled peers. Students with disabilities are more vulnerable to school violence from peers, teachers, and school staff due to stereotypes and prejudice. Teachers are pivotal in preventing violence and intervening, but literature on the role that teachers play in responding to disability-based violence is limited. Guided by the social-ecological framework of bullying, this qualitative study explored educators' responses to school violence against students with disabilities in Zambia. Data generation included document review, interviews, and focus groups with 33 teachers and 12 parents, and child-friendly methods with 90 students with disabilities. Findings illuminated that students with disabilities are less safe in schools. Teachers are not responding to violence seen or heard about due to stigmatizing beliefs and cultural norms surrounding disability and violence, with students with disabilities blamed for the violence and the response being their burden. Students with disabilities felt protected by special education teachers; however, disability-based stigma did not end with the student. By association, special education teachers were experiencing stigma from other teachers and were discouraged to respond. This stigma undermined the support special education teachers could provide to decrease school violence. Findings provide direction so teachers can respond to school violence in prosocial ways that create an environment where students with disabilities feel safe.
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Pessoas com Deficiência , Violência , Humanos , Violência/prevenção & controle , Instituições Acadêmicas , Estudantes , Preconceito , Professores EscolaresRESUMO
Students with disabilities are more likely to be bullied at school than nondisabled students. This study aimed to understand occupational therapists' practices and roles in addressing bullying against students with disabilities. An electronic survey was distributed in the United States to school-based occupational therapists to collect information on roles, practices, and barriers in addressing bullying. Data were analyzed using inferential statistics, frequencies, percentages, and content analysis. A total of 151 occupational therapists participated. The results illuminated critical gaps in occupational therapy practice. The majority of occupational therapists see or hear of bullying but do not address it. They reported the lack of evidence and interventions to draw upon and time due to caseload as key barriers. Occupational therapists can contribute to anti-bullying practices as a member of the interprofessional team, bringing in strategies and interventions from occupational therapy to create safer environments for all students.
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Bullying , Terapia Ocupacional , Bullying/prevenção & controle , Humanos , Terapeutas Ocupacionais , Instituições Acadêmicas , Estudantes , Estados UnidosRESUMO
IMPORTANCE: Being in an intimate relationship is a desired occupation for many people, in particular for women living in low- and middle-income countries (LMICs), where relationships can provide material support, intimacy, and social integration and increase chances of survival. OBJECTIVE: To explore accounts of navigating intimate relationships from women with disabilities in Sierra Leone. DESIGN: A qualitative study was conducted, guided by a critical occupational approach and informed by feminist disability scholarship. Data were generated through interviews and analyzed using reflexive thematic analysis. SETTING: Community-based across four districts of Sierra Leone. PARTICIPANTS: Thirteen women with disabilities were recruited by means of snowball and purposive sampling. RESULTS: Four themes were generated that illuminated the women's experiences of intimate relationships as viewed through the lens of gender and disability dimensions. The overarching theme, "violence in intimate relationships," describes the incidences of violence and abuse they experienced. "Becoming a wife" explores the women's occupational identity wishes. "Leaving as an occupational rupture" illuminates the actions the women took to end the relationship. "Mothering as an occupational identity and resource" focuses on the women's role as mothers and transitions in their occupations. CONCLUSIONS AND RELEVANCE: Taking their unique narratives into account draws attention to how the women have met their occupational needs and resisted occupational injustices, enabled by social and structural supports, including their children, disability social benefits, and their engagement in the disability rights movement. Implications are directed at socially committed occupational therapists to address systemic issues of disability- and gender-based violence. What This Article Adds: This study adds much-needed knowledge in an area in which there is a paucity of research: the experiences of women with disabilities being in an intimate relationship as a social occupation in an LMIC. The results illuminate the importance of considering the systemic issues that affect the social occupations of women with disabilities, particularly in light of the shift within occupational therapy practice toward developing a socially transformative focus.
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Pessoas com Deficiência , Criança , Feminino , Humanos , Relações Interpessoais , Pobreza , Pesquisa Qualitativa , Comportamento SexualRESUMO
The ongoing racism pandemic in the United States negatively impacts the health, safety, and occupations of Black, Indigenous, and/or People of Color. Although occupational therapy (OT) practitioners have a pressing obligation to actively address racism's causes and consequences, they lack guidance on what to do. This scoping study sought to identify and synthesize existing knowledge on ways OT practitioners and the profession can engage in anti-racist actions. Six databases were searched for content related to OT and anti-racism. The 31 included articles indicated that OT practitioners should: engage in reflexivity on ways their power and privilege impact therapeutic relationships, use inclusive models, consider how racism can impact client occupations and health care access, and address structural racism through advocacy and occupations as means. Although being anti-racist is a lifelong process, strategies within this study can support OT practitioners and the profession to initiate concrete anti-racist actions.
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Terapia Ocupacional , Racismo , Humanos , Estados UnidosRESUMO
INTRODUCTION: Young people's participation in health research produces knowledge that is indispensable for creating appropriate and effective policies. However, how best to disseminate youth participatory research evidence to impact health policy is not known. Therefore, the objectives of this systematic review are to describe the evidence produced through youth participatory research, including the strategies used to disseminate youth participatory research evidence to health policymakers. These are necessary to improve policymakers' use of youth participatory research evidence and, thereby, make programmes more impactful for young people. METHODS AND ANALYSIS: The meta-narrative methodology will guide the systematic review to highlight the contrasting and complementary evidence on the use of engaging youth in research to affect health policymaking. Relevant studies will be identified by searching electronic databases, including but not limited to EBSCO, PROQUEST, OVID Medline, Sociological Abstracts and Google Scholar from inception to December 2020. The methodological quality of included quantitative, qualitative and mixed-methods research studies will be assessed using valid appraisal tools. The meta-narrative approach to analysis will include identifying meta-narratives of how youth participation informed the health research findings. ETHICS AND DISSEMINATION: An advisory group of young people will advise on the study and dissemination of the findings. As part of our plan for active dissemination, we will produce a policy brief that builds the rationale for using research with and by youth as part of an evidence base necessary for achieving youth health outcomes.
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Pesquisa Participativa Baseada na Comunidade , Política de Saúde , Adolescente , Humanos , Conhecimento , Narração , Formulação de Políticas , Revisões Sistemáticas como AssuntoAssuntos
Crianças com Deficiência , Adolescente , Criança , Doença Crônica , Países em Desenvolvimento , Humanos , RendaRESUMO
BACKGROUND: There is an urgent need to understand how best to prevent and respond to violence against children with disabilities as they are at a high risk for violence because they are marginalized, isolated, and targeted and have little power within their communities. OBJECTIVE: Guided by social-ecological theory, this study explores responses to violence against children with disabilities, including preventative measures and treatment of victims in the West African countries of Guinea, Niger, Sierra Leone, and Togo. PARTICIPANTS: Participants were recruited using purposive and snowball sampling from the following three groups: disability stakeholders including representatives from local, national, and international organizations and governments; community members including parents, teachers, and leaders; and children with disabilities. METHODS: A qualitative study design guided data generation, that included document analysis, semi-structured interviews, and focus groups across the four countries. In total, 419 people participated. Of those participants, 191 took part in an interview and the rest participated in one of 55 focus groups. FINDINGS: Responses to disability-based violence are driven at the mesosystem and exosystem levels. Prevailing views indicated that national level policies and laws are not always considered part of solutions, communities are leading responses to violence, and children with disabilities are hidden at home or in institutions for both their own and their family's safety. Conclusions The findings can inform development of prevention and intervention programs that will protect children with disabilities from violence in contexts with high levels of disability stigma, social conflict, violence, and poverty.
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Defesa da Criança e do Adolescente , Crianças com Deficiência/psicologia , Violência/prevenção & controle , África Ocidental , Criança , Família , Feminino , Grupos Focais , Humanos , Masculino , Pobreza , Serra Leoa , Estigma SocialRESUMO
There has been a proliferation of organizations in Zambia touting the mobilization of traditional games as a tool to prevent HIV. However, there is a dearth of evidence on how culturally important activities like traditional games are being incorporated into programing. The purpose of this study was to explore how traditional games are used as a strategy to prevent HIV in Zambia. This qualitative study generated data from 17 case studies of HIV programs operating in Lusaka, Zambia. Observations of the programs were conducted and 44 interviews with program staff were completed. Participants believed that traditional games can engage youth while helping them learn about HIV. However, when traditional games were implemented, they were oversimplified and taught via regimented practices that did not foster critical thinking. This kind of implementation comes at the expense of the development of skills needed to retain and act on information essential for HIV prevention. The results of the study also reveal that due to the increase in cultural pride that has welcomed the revival of traditional games, there are opportunities to encourage government and political support for their systematic integration to address HIV in Zambia.