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1.
Curr Dev Nutr ; 8(6): 103775, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38948106

RESUMO

Produce prescription programs (PPPs) are place-based interventions at the intersection of public health and local food advocacy. These programs have expanded significantly across the United States since 2010, particularly taking off in the state of West Virginia. This article draws on a 4-y institutional ethnography of PPP programs and associated policy. Although the possibilities of building support for improving community health alongside the livelihoods of small-scale producers is compelling, there exists an overall decontextualization from broader social and political determinants of health. This article concludes that although programs are able to meet some acute needs for program participants and provide income for small-scale producers, this decontextualization results from a lack of consideration of wider systems within policy and program construction, leading to missed opportunities for food system transformation.

2.
Br J Community Nurs ; 29(7): 326-334, 2024 Jul 02.
Artigo em Inglês | MEDLINE | ID: mdl-38963274

RESUMO

BACKGROUND: Collaboration is a key factor influencing the quality and safety in patients transition between sectors. However, specific collaborative practices may give rise to conflict between hospital nurses and community nurses. AIMS: To gain a deeper understanding of collaborative practices which have the potential to fuel tension in collaboration between hospital nurses and community nurses during discharge of older patients from hospital to homecare. METHODS: A meta-ethnography approach was used in this study and a systematic literature search was conducted in 2022. RESULTS: Five themes were identified in the analysis. These themes revealed how uncertainty, limited confidence in information and personal attitude in communication may fuel tension between hospital nurses and community nurses. Tensions arising from a negative loop emerged because of uncertainty, causing a growing rift between hospital nurses and community nurses, leaving them as opponents rather than collaborators. The authors suggest that policy makers and managers can break this loop by underpinning shared policies and awareness of common objectives.


Assuntos
Serviços de Assistência Domiciliar , Alta do Paciente , Humanos , Idoso , Comportamento Cooperativo , Recursos Humanos de Enfermagem Hospitalar/psicologia , Enfermagem em Saúde Comunitária , Antropologia Cultural , Atitude do Pessoal de Saúde
3.
Wellcome Open Res ; 9: 149, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38952567

RESUMO

Background: Social prescribing involves connecting individuals to community groups and activities, often to support their mental health and well-being. It has received increasing support in recent years across the NHS. There is a strong evidence base for the benefits of different types of community activities, including exercise groups, arts groups and nature interventions, on mental health outcomes, however, less is known about how these groups impact mental health and well-being. This study explores through what individual-level mechanisms (the 'how') these groups support psychosocial well-being. Methods: An ethnographic study was conducted over 12-months to explore key shared, individual-level mechanisms across 4 social prescribing community groups: football, singing, gardening and reading. This study focused mostly on those with severe mental illness, whereas previously most social prescribing studies have focused on mild to moderate mental health problems. To frame the findings, a 'multi-level theoretical framework of mechanisms of action' of leisure activities was used. Results: Key shared psychological mechanisms were: increased self-confidence and self-esteem, increased purpose/meaning, increased sense of achievement, experience of pleasure; social mechanisms included: increased social support, formation of friendships and reduced loneliness, enhanced sense of community and belonging; behavioural mechanisms were: increased independence and openness to experience, reduction in addictive behaviours and building healthier habits, increased work-seeking behaviour, and provision of structure & routine. Conclusions: It is hoped that the findings of this study can help referring professionals increase their understanding of exactly how such groups support individuals' mental health, thus enhancing referring practices.


This study uses ethnographic methods, wherein the lead researcher spent over a year participating in 4 different community groups, using interviews, conversations and observation to explore the mental health impact of such groups on individuals' lives. The participants had moderate to severe mental health conditions, and the groups consisted of a reading, gardening, singing and football group. The study explored 'mechanisms' underlying the mental health benefits of these groups. Key shared psychological mechanisms were: increased self-confidence and self-esteem, increased purpose/meaning, increased sense of achievement, experience of pleasure; social mechanisms included: increased social support, formation of friendships and reduced loneliness, enhanced sense of community and belonging; behavioural mechanisms were: increased independence and openness to experience, reduction in addictive behaviours and building healthier habits, increased work-seeking behaviour, and provision of structure & routine. It is hoped that the findings of this study can help referring professionals (e.g. GPs, social workers, link workers) increase their understanding of exactly how such groups support individuals' mental health, thus improving referring skills.

4.
BMC Public Health ; 24(1): 1891, 2024 Jul 15.
Artigo em Inglês | MEDLINE | ID: mdl-39010025

RESUMO

Child labor is one of the important social issues that deprive children of many fundamental rights, and make them face many problems and consequences, including health problems. Thus, this study was conducted with the aim of examining the health of working children in Tehran. This is an ethnographic study that was conducted using Carspecken's approach and was completed in 2022. The main participants of this study included working children aged 10-18 years living in Tehran. In order to collect information, the researcher was present at the workplace, school, and living places of working children for more than two years, observing their lives and activities. Formal and informal interviews were also conducted with the working children and informed people. In total, hundreds of working children were assessed and observed in this research. A friendly conversation was formed between the researcher and more than 50 children, and official interviews were conducted with six of the working children. Also, more than 10 official interviews were conducted with informed people and parents of working children. In addition to observations and interviews, documents such as medical records and drawings of working children were also examined and interpreted. The information obtained from observations, interviews, and documents was entered into MAXQDA software, and its raw codes were extracted. The high-level codes as well as sub and main categories were formed from the aggregation of low-level codes. Impaired health was formed from three subcategories of tormented body (work and environmental trauma, sexual abuse, malnutrition, fatigue, sleep disorder and inadequate hygiene), disquieted mind (anxious children, depression and isolation, reduced self-esteem and unfocused mind) and disrupted sociability (negative social role modeling, aggression and violence, stubbornness and vindictiveness, harassment and nuisance, reprehensible social behaviors, neglecting others' ownership, disturbed relationships and out-group self-censorship). The results of the present study showed that the health of working children is compromised in various physical, psychological, and social ways. Therefore, some measures should be taken at the national and international levels to improve their health, such as revising the existing laws regarding children and informing children of their rights.


Assuntos
Antropologia Cultural , Humanos , Criança , Irã (Geográfico) , Adolescente , Masculino , Feminino , Trabalho Infantil , Entrevistas como Assunto , Nível de Saúde
5.
Violence Vict ; 2024 Jul 17.
Artigo em Inglês | MEDLINE | ID: mdl-39019567

RESUMO

This study explored lived experiences of LGBTQIA+ survivors of intimate partner violence (IPV). Seven participants completed a one-on-one, in-depth interview to share their experiences of IPV and any internal or external factors that influenced whether they sought support services or reported victimization. Thematic analysis revealed four overarching themes: (a) health complications, (b) coping mechanisms, (c) barriers to seeking professional help, and (d) suggestions for professionals. Results contribute insight into internal and external barriers LGBTQIA+ IPV survivors face when accessing support services and outline practical approaches for professionals providing support to LGBTQIA+ IPV survivors.

6.
Res Involv Engagem ; 10(1): 76, 2024 Jul 23.
Artigo em Inglês | MEDLINE | ID: mdl-39044294

RESUMO

BACKGROUND: In rare diseases, limited access to services and rare disease experts may force families to act as medical advocates for their child; they can volunteer to support clinician-initiated research or initiate and lead research themselves. Ketotic Hypoglycemia International (KHI) is a new, global organization for families affected by idiopathic ketotic hypoglycemia (IKH) and is run solely by volunteers. Doing research together, families and international experts in a collaborative process such as at KHI, also referred to as patient and public involvement and engagement (PPIE) or extreme citizen science, is often praised for its positive effects on the research and the stakeholders involved. METHODS: We used auto-ethnographic narratives from parents and medical professionals in KHI to report on their experiences with co-produced health research. All co-authors wrote down their experiences in relation to three topics: time invested, work invested and power dynamics. RESULTS: Whilst the parents and health care professionals felt a new hope for (their) children with IKH, they also felt pressure to contribute time or to be flexible in how and when they dedicated time towards the organization. The power dynamics were characterised by a change in the relationship between the parents and medical experts; the parent being taught by the expert shifted to the expert learning from the lived experience of the parent. Both parents and medical experts struggled with maintaining boundaries and safeguarding their mental health. CONCLUSION: Our findings call for the need to secure and prioritize funding for patient organizations, to enable them to create the sustainable architecture required for meaningful PPIE within these organizations. The morals and often deeply personal reasons for engaging with voluntary work in health research, can lead to overstepping of boundaries. As a result of our research, we call for the development of ethics of care guidelines within collaborative health research.


When confronted with a rare disease it is often hard to access information and or medical experts for help. Parents of children affected by idiopathic ketotic hypoglycemia (IKH) have joined in a patient-led organisation to initiate and lead research that could give answers to their medical questions and worries. Medical experts have been invited to join the organisation as members of the Scientific Advisory Board (SAB). When people report on health research conducted in collaboration with patients and or members of the public, they mostly mention positive outcomes. At KHI, some people had left the organisation and we had to deal with some difficult situations; so, we wanted to document and understand these challenges. Nine members of KHI, parents and medical experts, wrote down their stories, using three topics to guide their narrative: time invested, work invested and power dynamics at KHI. Parents and medical experts felt a new hope for (their) children with IKH when working for KHI but they also felt pressured to work at all hours and at the cost of time with their families or their own health. The stories revealed that parents felt less important compared to medical experts, but also that the relationship between parents and experts changed from the parent being taught by the expert, to the expert starting to learn from the lived experience of the parent. To make these collaborations successful we plead for funding for patient-led organisation and ethical guidelines to safeguard volunteers (both medical and lay people).

7.
Malar J ; 23(1): 221, 2024 Jul 24.
Artigo em Inglês | MEDLINE | ID: mdl-39049091

RESUMO

BACKGROUND: In the scientific literature on Malaria in Pregnancy (MiP), no studies have been conducted on lifestyles based on critical theory. The objective of this study was to analyse the lifestyles or singular processes of social determination of health in MiP in northwestern Colombia. METHODS: Mixed QUAN-QUAL convergent triangulation study. In the quantitative component, a psychometric evaluation and a cross-sectional design were conducted in 400 pregnant women to whom the Pender-Walker lifestyle scale and a survey on MiP prevention were applied. In the qualitative study, a critical ethnography was conducted with 46 pregnant women in whom their narratives and practices regarding lifestyles at home and healthcare were described. RESULTS: The frequency of MiP was 9%, and a higher occurrence of the disease was identified in those who did not control stagnant water (29%), did not use insecticide-treated net (16%) and went to the hospital (14%) or the microscopist (20%) when they had fever. This coincides with the presence of unhealthy lifestyles, little knowledge about malaria, and a low perception of the risk of getting sick, as well as meanings and experiences about MiP, maternity, and pregnancy that show a high clinical, cultural, and socioeconomic burden for the women studied. CONCLUSION: This epidemiological profile and the approach to lifestyles based on the postulates of critical theory in health evidence that pregnant women exposed to malaria suffer serious social, cultural and health injustices that are not possible to impact with the current health model of malaria control in Colombia guided by aetiopathogenic, biomedical, positivist and utilitarian theories.


Assuntos
Estilo de Vida , Malária , Humanos , Feminino , Colômbia/epidemiologia , Gravidez , Adulto , Malária/epidemiologia , Malária/prevenção & controle , Estudos Transversais , Adulto Jovem , Adolescente , Complicações Parasitárias na Gravidez/epidemiologia , Complicações Parasitárias na Gravidez/prevenção & controle
8.
Nurs Open ; 11(7): e2237, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38957916

RESUMO

AIM: To explore the assumptions and values that influence nursing health assessment practices among registered general nurses in general medical and surgical wards. DESIGN: The study was designed as a focused ethnography. METHODS: A semi-structured interview guide was used to explore prevailing nursing health assessment practices of 13 registered general nurses in an attempt to explore the assumptions and values influencing health assessment practices in the study setting. Data were analysed inductively using an interpretive qualitative content analysis method. RESULTS: Nursing health assessment practices, and underlying assumptions and values were underpinned by a central theme of a culture of low expectation relating to nursing health assessment. The culture of low expectation was highlighted in five themes: (1) Unsystematic Assessment of Health Status, (2) Purpose of Nursing Health Assessment, (3) The Role of Nursing Educational and Regulatory Institutions, (4) Ward Ethos and (5) The Role of Organizational and Ward Leadership. IMPLICATION: The adoption of a holistic nursing health assessment framework with a clearly defined purpose of aiding nursing diagnoses can guide patient-centred care delivery and facilitate early recognition of physiological deterioration. PATIENT OR PUBLIC CONTRIBUTION: Thirteen registered general nurses were interviewed, and the initial findings returned to them for validation. CONCLUSION: The potential contribution of nursing health assessment to nursing practice and patient outcomes may not be fully realized if nursing health assessment is not situated within a holistic health assessment model with a clearly defined purpose for nursing practice.


Assuntos
Antropologia Cultural , Pesquisa Qualitativa , Centros de Atenção Terciária , Humanos , Avaliação em Enfermagem/métodos , Feminino , Adulto , Recursos Humanos de Enfermagem Hospitalar/psicologia , Masculino , Entrevistas como Assunto/métodos , Enfermeiras e Enfermeiros/psicologia , Atitude do Pessoal de Saúde , Pessoa de Meia-Idade
9.
Cult Med Psychiatry ; 2024 Jul 08.
Artigo em Inglês | MEDLINE | ID: mdl-38976177

RESUMO

The refugee experience has been associated with increased rates of psychosocial challenges. At the same time, evidence suggests that those who resettled in Western countries including Canada underutilize the formal mental health services in these countries. The low uptake has been attributed to barriers such as language, complexity of the health systems, and differing explanatory models of illness. The same is true for Somali refugees in the West. Studies suggest that Somali refugees prefer spiritual healing for psychosocial illness and that some return to East Africa for such healing. However, little is known about Somali Canadian's experiences with the Canadian mental health services and transnational health seeking. The study aimed to understand psychosocial challenges faced by Somali Canadians, their health seeking behaviors, and service utilization. Because some sought psychosocial services outside the country, fieldwork was conducted in Kenya to provide new evidence on transnational healing services. Ethnographic fieldwork and in-depth interviews were utilized. Thirty-seven interviews of about an hour each were undertaken. Fieldwork in Nairobi focused on spiritual healing centers and medical clinic. The findings reveal important findings regarding psychosocial challenges experienced by participants. It discusses psychosocial illnesses as variedly experienced, challenges with accessing Canadian healthcare services, and seeking culturally appropriate services in East Africa. The study highlights participants and their families struggle with psychosocial distress, the challenges of accessing culturally appropriate services within Canada, the role of spiritual healers and the existence of transnational health seeking practices.

10.
Artigo em Inglês | MEDLINE | ID: mdl-38991975

RESUMO

ISSUE ADDRESSED: This article presents a framework to identify hidden psychosocial hazards and emerging mental health risks in the workplace, thereby assisting Persons Conducting a Business or Undertaking. The framework adds value to the processes outlined in SafeWork NSW's Code of Practice for Managing Psychosocial Hazards At Work. Specifically, the article documents a framework to analyse microcultures and back stage sites of enactment where psychosocial hazards and risks may be hidden or obscured in workplace settings. BACKGROUND: The article's framework aims to bring to the surface both the intra and interpersonal tensions employees experience in the social reality they inhabit while they perform their work, thereby positively contributing to organisations and PCBUs by helping them create healthy workplace cultures and psychological safety. METHODS: Specifically, the article discusses partnering with an organisational ethnographer when a PCBU embarks upon psychosocial investigations to: gain access, select employee participants, start conversations, establish rapport, build trust, collect and analyse data. CONCLUSION: This article theoretically contributes to health promotion literatures by offering organisations a complementary way of extracting deeper insights and understandings of psychosocial hazards and emerging mental health risks which are not apparent with traditional methods of inquiry.

11.
BMC Med ; 22(1): 280, 2024 Jul 04.
Artigo em Inglês | MEDLINE | ID: mdl-38965525

RESUMO

BACKGROUND: Social prescribing is gaining traction internationally. It is an approach which seeks to address non-medical and health-related social needs through taking a holistic person-centred and community-based approach. This involves connecting people with and supporting them to access groups and organisations within their local communities. It is hoped that social prescribing might improve health inequities and reduce reliance on healthcare services. In the UK, social prescribing link workers have become core parts of primary care teams. Despite growing literature on the implementation of social prescribing, to date there has been no synthesis that develops a theoretical understanding of the factors that shape link workers' experiences of their role. METHODS: We undertook a meta-ethnographic evidence synthesis of qualitative literature to develop a novel conceptual framework that explains how link workers experience their roles. We identified studies using a systematic search of key databases, Google alerts, and through scanning reference lists of included studies. We followed the eMERGe guidance when conducting and reporting this meta-ethnography. RESULTS: Our synthesis included 21 studies and developed a "line of argument" or overarching conceptual framework which highlighted inherent and interacting tensions present at each of the levels that social prescribing operates. These tensions may arise from a mismatch between the policy logic of social prescribing and the material and structural reality, shaped by social, political, and economic forces, into which it is being implemented. CONCLUSIONS: The tensions highlighted in our review shape link workers' experiences of their role. They may call into question the sustainability of social prescribing and the link worker role as currently implemented, as well as their ability to deliver desired outcomes such as reducing health inequities or healthcare service utilisation. Greater consideration should be given to how the link worker role is defined, deployed, and trained. Furthermore, thought should be given to ensuring that the infrastructure into which social prescribing is being implemented is sufficient to meet needs. Should social prescribing seek to improve outcomes for those experiencing social and economic disadvantage, it may be necessary for social prescribing models to allow for more intensive and longer-term modes of support.


Assuntos
Antropologia Cultural , Humanos , Reino Unido
12.
Health Soc Care Deliv Res ; 12(17): 1-218, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-39046284

RESUMO

Background: Childhood chronic pain is a widespread public health issue. We need to understand how children with chronic pain and their families experience chronic pain and its management. Objectives: To conduct a meta-ethnography on the experiences and perceptions of children with chronic pain and their families of chronic pain, treatments and services. We investigated how children and their families conceptualise and live with chronic pain; what they think of and want from health and social care services; and what they conceptualise as 'good' pain management. Design: Meta-ethnography with stakeholder and patient and public involvement in the design, search and sampling strategies, analysis and dissemination. Review strategy: comprehensive searches of 12 bibliographic databases and supplementary searches in September 2022, to identify qualitative studies with children aged 3 months to 18 years with chronic non-cancer pain and their families. We included studies with rich explanatory data; appraised methodological limitations using the Critical Appraisal Skills Programme tool; and extracted, analysed and synthesised studies' findings. We used Grading of Recommendations Assessment, Development and Evaluation-confidence in the evidence from reviews of qualitative research to assess confidence in review findings. We integrated findings with 14 Cochrane treatment effectiveness reviews on children's chronic non-cancer pain. Results: We synthesised 43 studies sampled from 170 eligible studies reported in 182 publications. Studies had minor (n = 24) or moderate (n = 19) methodological limitations. Grading of Recommendations Assessment, Development and Evaluation-confidence in the evidence from reviews of qualitative research assessments of review findings were high (n = 22), moderate (n = 13) or very low confidence (n = 1). Moderate and severe chronic pain had profound adverse impacts on family members' well-being, autonomy and self-identity; family dynamics; parenting approaches; friendships and socialising; children's education and parental paid employment. Most children and families sought a biomedical cure for pain. They experienced difficulties seeking and receiving support from health services to manage pain and its impacts. Consequently, some families repeatedly visited health services. Cochrane reviews of intervention effects and trials did not measure some outcomes important to children and families, for example effects of pain on the family and resolution of pain. Reviews have mainly neglected a biopsychosocial approach when considering how interventions work. Limitations: There were limited data on common pain conditions like migraine/headache, abdominal pain; some rarer conditions; children with learning disabilities and under-fives; siblings; fathers and experiences of treatments/services. We excluded studies on cancer, end-of-life pain and experiences of healthcare professionals. Conclusions: We developed the family-centred theory of children's chronic pain management, integrating health and social care with community support. Future work: Future research should explore families' experiences of services and treatments, including opioids, and social care services; experiences of children with autism and learning disabilities, under 5 years old and with certain common pain conditions. We need development and testing of family-centred interventions and services. Study registration: This study is registered as PROSPERO (CRD42019161455) and Cochrane Pain, Palliative and Supportive Care (623). Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR128671) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 17. See the NIHR Funding and Awards website for further award information.


Chronic pain lasting 3 months or more affects at least 8% of children in the UK. It causes difficulties with many aspects of children's lives including relationships, school attendance and use of National Health Services. In the UK, there are few specialist services and a lack of high-quality research for managing children's chronic pain. Our study aimed to locate and pull together existing research on the experiences and views of children with chronic pain and their families. We wanted to find out how they think about and live with chronic pain, and their views and experiences of services and treatments, and what they want to achieve from them. We conducted this study alongside children with chronic pain and their families, charities, healthcare professionals and academic experts. They helped us to conduct the study and to ensure our findings are relevant to children, families and the National Health Service. We pulled together data from 43 studies that best answered our questions. We found that moderate and severe children's chronic pain that was not well managed affected the whole family, including their relationships and social lives. Families found it difficult to get help and a diagnosis from health services. Most families wanted a medical cure for pain. Families had long waits for answers and treatment but gradually realised there may be no cure, so they focused on living well with pain or gave up hope. Children and families from ethnic minority groups or with a learning disability experienced discrimination. Few studies focused on children under 5 years old, children with learning disabilities or experiences of services. Families need a pain management approach tailored to the whole family's needs involving schools, social care and health services. Our findings could improve treatment guidelines, training of health and social care professionals and service design and treatments.


Assuntos
Antropologia Cultural , Dor Crônica , Manejo da Dor , Humanos , Dor Crônica/terapia , Dor Crônica/psicologia , Criança , Manejo da Dor/métodos , Adolescente , Pré-Escolar , Família/psicologia , Lactente , Pesquisa Qualitativa , Feminino , Masculino
14.
SAGE Open Nurs ; 10: 23779608241266686, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39070007

RESUMO

Introduction: Educational health promotion interventions for people with early-stage dementia have shown promising results, including empowering the person with dementia to live well and cope with their condition. Objectives: The aim of this study was to explore how group interactions, course structure, and facilitation by healthcare professionals in a 12-week educational health promotion course promote coping, healthy behaviors, and empowerment in people with early-stage dementia. Method: A focused ethnographic approach was employed, collecting data through moderate participant observations of people with early-stage dementia who attended the health promotion course and field conversations with the facilitators. Additionally, before and after the participants had completed the course, the participants and their care partners were interviewed individually. Results: The findings showed that group discussions provided an opportunity for the facilitators to identify knowledge gaps, correct misinterpretations of symptoms, and tailor the information to the participants' specific needs, thereby promoting healthy behaviors and empowering the participants. The consistent and structured format of the course appeared to reduce stress and promote learning. Learning about dementia first-hand, reminiscing, using humor, receiving support from others facing similar challenges, and receiving support and validation from facilitators all contributed to participants coping with their condition, processing negative emotions, and reducing internalized stigma. Conclusion: This study emphasized the importance of providing people living with early-stage dementia educational opportunities that combine first-hand information, peer and facilitator support, reminiscing, humor, recognition, and validation. These interventions can contribute to promote coping, healthy behaviors, and empowerment in people living with early-stage dementia.

15.
J Aging Stud ; 69: 101235, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38834249

RESUMO

Having the choice to stay living in one's home and community for as long as possible is a desire of people living with dementia. Yet, for many, this is not a reality due to a lack of appropriate support, unsuitable housing and built environments, social exclusion, and stigma. The global movement called Dementia Friendly Communities aims to address such barriers and bring about positive change. At the local place-based level, Dementia Friendly Community initiatives are typically planned and implemented by committees, yet little is known about how they operate to enact Dementia Friendly Community principles. Using micro-ethnography and a case study approach, two Australian - Queensland Dementia Friendly Community committees and their activities were studied to better understand implementation at the local level. This involved 16 semi-structured interviews, participant observation and field notes identifying goals, approaches, and tensions. While both committees showed the capacity to raise awareness of issues impacting people living with dementia, there were substantial differences in the implementation of the key Dementia Friendly Community principle of inclusion of people living with dementia and carers. Key differences were the way people living with dementia were positioned and the part they were expected to play in committees, whether they were empowered and valued or tokenistically included yet not listened to. Three aspects of practice are central to more meaningful inclusion: engagement, power-sharing, and leadership. Local action groups directed and led by people living with dementia and their carers, with the support of key local people and organizations, help to progress Dementia Friendly Communities locally.


Assuntos
Demência , Humanos , Queensland , Vida Independente , Cuidadores/psicologia , Feminino , Masculino , Idoso , Antropologia Cultural
16.
J Aging Stud ; 69: 101226, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38834246

RESUMO

BACKGROUND: Supporting ageing in place, quality of life and activity engagement are public health priorities for people living with dementia, but little is known about the needs and experiences of community-dwelling people with rarer forms of dementia with lesser known symptoms. Posterior cortical atrophy (PCA) is a rare form of dementia usually caused by Alzheimer's disease but which is characterised by diminished visual processing (rather than a dominant memory problem), which poses challenges for maintaining independence and accessing appropriate support. METHODS: This study used a comparative qualitative design and focussed ethnographic methods to explore experiential differences in activity engagement for 10 people with the most common, memory-led presentation of Alzheimer's disease and 10 people with posterior cortical atrophy within their everyday home environments. RESULTS: While the data collection revealed much rich variation in individual and contextual factors, some tentative high-level differences in the experiences of everyday activities could be drawn out, seemingly attributable to the different diagnoses' differing dominant symptoms. These included people with posterior cortical atrophy being less likely to use environmental cues to initiate activities, and more likely to withhold from asking for support because of preserved insight into the impact of this on carers. This lack of initiation of activities could be misinterpreted as apathy. People with posterior cortical atrophy also were discouraged from engaging in activities by disorientation within the home, and difficulties localising, identifying and manipulating objects. People with the more common, memory-led presentation of Alzheimer's disease exhibited more memory-based difficulties with engaging with activities such as forgetting planned activities, where to locate the items required for an activity and the steps involved. Despite these distinct symptom-led challenges, all participants and their family members demonstrated resourcefulness and resilience in making creative adaptations to support continued engagement in everyday activities, supporting the widely reported management strategies of people with dementia of the Alzheimer's type more generally. CONCLUSIONS: These findings offer helpful insights into some the differing impacts dementia related visual and memory impairments can have on everyday activity engagement, which will be helpful for others navigating these challenges and the health and social care practitioners working with people affected by these conditions. The findings also highlight the vast individual variation in the multitude of individual and contextual factors involved in everyday activity engagement, and suggest important areas for future work utilising methods which are similarly high in ecological validity and accessibility as the home-based focussed ethnographic methods utilised here.


Assuntos
Atividades Cotidianas , Doença de Alzheimer , Antropologia Cultural , Atrofia , Humanos , Doença de Alzheimer/psicologia , Feminino , Masculino , Idoso , Idoso de 80 Anos ou mais , Pesquisa Qualitativa , Qualidade de Vida/psicologia , Córtex Cerebral/patologia , Vida Independente
17.
J Adv Nurs ; 2024 Jun 27.
Artigo em Inglês | MEDLINE | ID: mdl-38934291

RESUMO

AIMS: To address knowledge gaps by (i) developing a theoretical understanding of escalation and (ii) identifying escalation success factors. DESIGN: Non-participant observations were used to examine deteriorating patient escalation events. METHODS: Escalation event data were collected by a researcher who shadowed clinical staff, between February 16th 2021 and March 17th 2022 from two National Health Service Trusts. Events were analysed using Framework Analysis. Escalation tasks were mapped using a Hierarchical Task Analysis diagram and data presented as percentages, frequency and 95% CI. RESULTS: A total of 38 observation sessions were conducted, totaling 105 h, during which 151 escalation events were captured. Half of these were not early warning score-initiated and resulted from bleeding, infection, or chest pain. Four communication phenotypes were observed in the escalation events. The most common was Outcome Focused Escalation, where the referrer expected specific outcomes like blood cultures or antibiotic prescriptions. Informative Escalations were often used when a triggering patient's condition was of low clinical concern and ranked as the second most frequent escalation communication type. General Concern Escalations occurred when the referrer did not have predetermined expectations. Spontaneous Interaction Escalations were the least frequently observed, occurring opportunistically in communal workspaces. CONCLUSION: Half of the events were non-triggering escalations and understanding these can inform the design of systems to support staff better to undertake them. Escalation is not homogenous and differing escalation communication phenotypes exist. Informative Escalations represent an organizational requirement to report triggering warning scores and a targeted reduction of these may be organizationally advantageous. Increasing the frequency of Spontaneous Escalations, through hospital designs, may also be beneficial. IMPACT STATEMENT: Our work highlights that a significant proportion of escalation workload occurs without a triggering early warning score and there is scope to better support these with designed systems. Further examination of reducing Informative and increasing Spontaneous Escalations is also warranted. PATIENT AND PUBLIC CONTRIBUTION: Extensive PPIE was completed throughout the lifecycle of this study. PPIE members validated the research questions and overarching aims of the overall study. PPIE members contributed to the design of the study reviewed documents and the final data generated.

18.
J Health Organ Manag ; 38(9): 195-215, 2024 May 27.
Artigo em Inglês | MEDLINE | ID: mdl-38825598

RESUMO

PURPOSE: To explore the mechanisms of the implementation strategy, "oilcloth sessions" and understand and explain the ripple effects of oilcloth sessions as a strategy to implement a new emergency department. DESIGN/METHODOLOGY/APPROACH: A qualitative design was used whereby data were collected using field notes from an ethnographic study of the oilcloth sessions and follow-up semi-structured interviews with staff, managers and key employees who participated in the oilcloth sessions. The data analysis was inspired by the realist evaluation approach of generative causality proposed by Pawson and Tilley. FINDINGS: The primary ripple effect was that the oilcloth sessions were used for different purposes than the proposed program theory, including being used as: (1) a stage, (2) a battlefield, (3) a space for imagination and (4) a strategic management tool influencing the implementation outcomes. The results bring essential knowledge that may help to explain why and how a well-defined implementation strategy has unplanned outcomes. ORIGINALITY/VALUE: Unintended outcomes of implementation strategies are an underexplored issue. This study may help implementation researchers rethink the activities required to reduce unintended negative outcomes or explore potential unplanned outcomes and, in this way, hinder or enhance outcomes, effectiveness and sustainability. Future studies within implementation research should incorporate attention to unintended outcomes to fully understand the impact of implementation strategies.


Assuntos
Pesquisa Qualitativa , Humanos , Entrevistas como Assunto , Serviço Hospitalar de Emergência , Avaliação de Programas e Projetos de Saúde
19.
Health Policy Plan ; 2024 Jun 22.
Artigo em Inglês | MEDLINE | ID: mdl-38907518

RESUMO

Point-of-care tests (POCTs) have become technological solutions for many global health challenges. This meta-ethnography examines what in-depth qualitative research reveals about the "social lives" of POCTs from, highlighting key social considerations for policymakers, funders, developers and users in the design, development and deployment of POCTs. We screened qualitative research examining POCTs in low- and middle-income countries (LMICs) and selected 13 papers for synthesis. Findings illuminate five value-based logics-technological autonomy, care, scalability, rapidity and certainty-shaping global health innovation ecosystems and their entanglement with health systems. Our meta-ethnography suggests POCTs never achieve the technological autonomy often anticipated during design and development processes. Instead, they are both embedded in and constitutive of the dynamic relationships that make up health systems in practice. POCTs are often imagined as caring commodities; however, in use, notions of care inscribed in these devices are constantly negotiated and transformed in relation to multiple understandings of care. POCTs promise to standardize care across scale, yet our analysis indicates non-standard processes, diagnoses and treatment pathways as essential to "fluid technologies" rather than dangerous aberrations. The rapidity of POCTs is constructed and negotiated within multiple distinct temporal registers and POCTs operate as temporal objects that can either speed up or slow down experiences of diagnosis and innovation. Finally, while often valued as epistemic tools that can dispel diagnostic uncertainty, these papers demonstrate that POCTs contribute to new forms of uncertainty. Together, these papers point to knowledge practices as multiple, and POCTs as contributing to, rather than reducing, multiplicity. The values embedded in POCTs are fluid and contested, with important implications for the kind of care these tools can deliver. These findings can contribute to more reflexive approaches to global health innovation, which take into account limitations of established global health logics, and recognise the socio-technical complexity of health systems.

20.
Int J Equity Health ; 23(1): 114, 2024 Jun 03.
Artigo em Inglês | MEDLINE | ID: mdl-38831276

RESUMO

BACKGROUND: The intensive care unit presents structural complexities, and the prevailing power imbalance between patients and staff can lead to health disparities. Hence, unveiling the underlying factors that give rise to and reinforce these disparities can contribute to their prevention. This study aims to shed light on the stereotypes linked to ageism and lookism, which perpetuate health disparities within the intensive care unit setting in Iran. METHODS: This critical ethnographic study employed Carsepkan's approach and was carried out in intensive care units in the west of Iran from 2022 to 2023. The data collection and analysis were conducted through three interconnected stages. In the initial stage, more than 300 h of observations were made at the research site. In the subsequent stage, a horizon analysis was performed. Conversations with 14 informants were conducted in the final stage to enrich the dataset further. Then the analysis process was carried out as in the previous step to uncover an implicit culture of health disparity. To verify the validity and reliability of the study, credibility, conformability, dependability, and transferability were all taken into account. FINDINGS: The ageism and lookism stereotypes emerged from seven main themes; youth-centric; negative ageism; age-friendliness; age-related priority; centered care for pediatric patients and families; appearance-centeredness; and a contradiction between belief and behavior. CONCLUSION: This critical study showed that ageism and lookism stereotypes permeated the intensive care unit's culture. These stereotypes have the potential to influence equality dynamics, as well as to foster and support health disparity in the intensive care unit.


Assuntos
Etarismo , Antropologia Cultural , Unidades de Terapia Intensiva , Estereotipagem , Humanos , Irã (Geográfico) , Etarismo/psicologia , Masculino , Feminino , Adulto , Disparidades em Assistência à Saúde , Pessoa de Meia-Idade , Disparidades nos Níveis de Saúde
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