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BACKGROUND: Historically, researchers have been apt at conducting research on, rather than with, the people who are the focus of their efforts. Such approaches often fail to effectively support and benefit the populations they are intended to. This study aimed to explore the preferences of people with lived experience for engagement with research either as research participants within studies, or through active involvement in mental health research. METHODS: Data for this paper were collected in three separate lived experience agenda-setting studies conducted over a 9-year period from 2013 to 2022; two group discussions and an open-ended online survey. Data were combined and thematic analysis undertaken. RESULTS: Participants described the inclusion of lived experience as a critical ingredient and the highest level of knowledge and expertise in mental health research that should lead to knowledge generation and research agendas. Participants discussed the importance and value of research that enables sharing experiences and stories, expressed a need for flexibility in research methods for choice and agency, and support for greater active involvement of people with lived experience across all stages of research. Participants also spoke to the need for perspective and knowledge generated from people with lived experience to have equal power in research, making space for lived experience voices across multiple aspects of research, and greater respect and recognition of the value of lived experience. CONCLUSION: Lived experience in mental health research is coming of age, but dedicated, cocreated development is needed to get it right. People with lived experience increasingly understand the value their experiential knowledge brings to the mental health research effort, and describe a wide range of ways that researchers can support them to be research participants, and to get actively involved. Power-sharing, respect and recognition of lived experience as central to effective mental health research are the keys to 'keeping it real'. PATIENT OR PUBLIC CONTRIBUTION: People with lived experience of mental health problems or distress either personally, and/or as carers, family and kinship group members, were involved in the coideation and codesign of this research. All authors identify as people with lived experience.
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Salud Mental , Investigación Cualitativa , Humanos , Australia , Femenino , Masculino , Adulto , Persona de Mediana Edad , Encuestas y Cuestionarios , Participación del Paciente/psicología , Prioridad del Paciente/psicología , Sujetos de Investigación/psicologíaRESUMEN
BACKGROUND: Interest in the application of predictive risk models (PRMs) in health care to identify people most likely to experience disease and treatment-related complications is increasing. In cancer care, these techniques are focused primarily on the prediction of survival or life-threatening toxicities (eg, febrile neutropenia). Fewer studies focus on the use of PRMs for symptoms or supportive care needs. The application of PRMs to chemotherapy-related symptoms (CRS) would enable earlier identification and initiation of prompt, personalized, and tailored interventions. While some PRMs exist for CRS, few were translated into clinical practice, and human factors associated with their use were not reported. OBJECTIVE: We aim to explore patients' and clinicians' perspectives of the utility and real-world application of PRMs to improve the management of CRS. METHODS: Focus groups (N=10) and interviews (N=5) were conducted with patients (N=28) and clinicians (N=26) across 5 European countries. Interactions were audio-recorded, transcribed verbatim, and analyzed thematically. RESULTS: Both clinicians and patients recognized the value of having individualized risk predictions for CRS and appreciated how this type of information would facilitate the provision of tailored preventative treatments or supportive care interactions. However, cautious and skeptical attitudes toward the use of PRMs in clinical care were noted by both groups, particularly in relationship to the uncertainty regarding how the information would be generated. Visualization and presentation of PRM information in a usable and useful format for both patients and clinicians was identified as a challenge to their successful implementation in clinical care. CONCLUSIONS: Findings from this study provide information on clinicians' and patients' perspectives on the clinical use of PRMs for the management of CRS. These international perspectives are important because they provide insight into the risks and benefits of using PRMs to evaluate CRS. In addition, they highlight the need to find ways to more effectively present and use this information in clinical practice. Further research that explores the best ways to incorporate this type of information while maintaining the human side of care is warranted. TRIAL REGISTRATION: ClinicalTrials.gov NCT02356081; https://clinicaltrials.gov/study/NCT02356081.
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Grupos Focales , Humanos , Masculino , Femenino , Persona de Mediana Edad , Antineoplásicos/efectos adversos , Antineoplásicos/uso terapéutico , Adulto , Anciano , Neoplasias/tratamiento farmacológico , Neoplasias/psicología , Medición de Riesgo/métodos , Entrevistas como Asunto , Actitud del Personal de Salud , Investigación Cualitativa , PercepciónRESUMEN
BACKGROUND: Distributed healthcare settings such as district hospitals, primary care, and public health facilities are becoming the real-life settings for workplace-based learning required to educate the future healthcare workforce. Therefore, a major focus should be on designing and developing workplace-based learning in these learning environments. Healthcare professionals and educational policymakers play a significant role in these settings as role models in workplace-based learning, and as leaders in integrating learning into their work environments. It is relevant to explore their beliefs, attitudes, and behaviors towards workplace-based learning in their own settings, in order to provide context-relevant recommendations that can assist in shaping workplace-based learning environments. METHODS: We used individual interviews to understand professionals' experiences with workplace-based learning in distributed healthcare settings. We - three clinicians, an educationalist, and a philosopher - thematically analyzed transcripts of 13 interviews with healthcare professionals and educational policymakers from different healthcare settings who were involved in the clinical phase of undergraduate medical education. RESULTS: Clustering and categorizing of the data led to the construction of five overarching themes: Identification with and attitude towards medical education, Sense of ownership, Perceived time and space, Mutual preconceptions and relations, and Curriculum for a changing profession. CONCLUSIONS: These themes accentuate aspects relevant to the development of workplace-based learning in distributed healthcare settings on the individual, team, or organizational level. We highlight the significance of individual professionals in the development of workplace-based learning and emphasize the need for recognition and support for those occupying the 'broker' role at the intersection of education and practice. For future research and educational practice, we recommend prioritizing initiatives that build on good-practices in workplace-based learning and involve dedicated individuals in distributed healthcare settings.
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Instituciones de Salud , Lugar de Trabajo , Humanos , Escolaridad , Investigación Cualitativa , Condiciones de TrabajoRESUMEN
OBJECTIVE: Using patient-generated quantitative data in psychotherapy (feedback) appears to enhance treatment outcome, but there is variability in its effect. Different ways and reasons to implement routine outcome measurement might explain such variability. The goal of this review is to address the insufficient knowledge on how these data are used by therapists and patients. METHODS: The present study is a systematic review and meta-analysis of qualitative reports of therapists' and patients' experiences using patient-generated quantitative data during ongoing psychotherapy. RESULTS: Four main categories of use were identified: (1) uses of patients' self-reported data as nomothetic/objective markers for assessment, process monitoring, and treatment planning; (2) intrapersonal uses that enhance self-awareness, initiate reflection, and influence patients' mood or responses; (3) uses that prompt interactional processes by facilitating communication, supporting exploration, creating ownership in patients, changing treatment focus, enhancing therapeutic alliance, or disturbing the psychotherapy process; and (4) patients responding for specific purposes due to uncertainty and interpersonal motives, or strategic responding to achieve a desired result. CONCLUSION: These results demonstrate that patient-reported data, when used in active psychotherapy, is very clearly not just an objective measurement of client functioning: the inclusion of patient-data has the potential to influence psychotherapy in numerous ways.
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Procesos Psicoterapéuticos , Alianza Terapéutica , Humanos , Autoinforme , Psicoterapia , Investigación CualitativaRESUMEN
Globally, healthcare has become dominated by women nurses. Gender is also known to impact the way people are cared for in various healthcare systems. Considering gender from the perspective of how lived bodies are positioned through the structural relations of institutions and processes, this systematic review aims to explore the meaning of gender in the caring relationship between the nurse and the older person through a synthesis of available empirical data published from 1993 to 2022. CINAHL, PUBMED, EMBASE and Web of Science were searched from the beginning of each database's temporal range, and PRISMA guidelines were used for the screening, reviewing and selection processes of available records. A thematic synthesis of the available data resulted in three analytical themes: (i) vulnerability of the gendered body, (ii) norms and values related to gender and sexuality and (iii) balancing closeness and distance in the nurse-patient relationship. These themes are intertwined and represent different aspects of gender meaning in the nurse-patient relationship. This research shows that gender, through its influence on the gendered body, its relationship with power dynamics in the caring process, and its intersection with dimensions of identity, has a significant meaning for the experienced vulnerability in the nurse-patient relationship. This has implications for the well-being and sense of dignity of the older person as well as the nurse.
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Relaciones Enfermero-Paciente , Respeto , Anciano , Femenino , Humanos , Factores SexualesRESUMEN
Black men who have sex with men (BMSM) are at higher risk of HIV transmission than any other group; however, their uptake of the highly effective HIV prevention medication, pre-exposure prophylaxis (PrEP), is low. In collaboration with a communitybased organization in Atlanta, Georgia, we explored ten HIV-negative BMSM's willingness to obtain PrEP in pharmacies using standard open-ended and vignette qualitative methods. Three overarching themes were identified: privacy, patient-pharmacist interactions, and HIV/STI screening. While open-ended questions allowed participants to provide broad answers on their willingness to receive prevention services at a pharmacy, the vignette drew out specific responses to facilitate in-pharmacy PrEP delivery. Using both openended questions and vignette data collection strategies, BMSM reported high willingness to screen for and uptake PrEP in pharmacies. However, the vignette method allowed for greater depth. Open-ended questions elicited responses that highlighted general barriers and facilitators of PrEP dispensing in pharmacies. However, the vignette allowed participants to customize a plan of action that would best fit their needs. Vignette methods are underutilized in HIV research and may be helpful in supplementing standard open-ended interview questions to uncovering unknown challenges about health behaviors and obtain more robust data on highly sensitive research topics in HIV research.
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Infecciones por VIH , Farmacias , Profilaxis Pre-Exposición , Minorías Sexuales y de Género , Enfermedades de Transmisión Sexual , Masculino , Humanos , Homosexualidad Masculina , Infecciones por VIH/prevención & control , Infecciones por VIH/tratamiento farmacológicoRESUMEN
Health professions education places significant emphasis on learning in the clinical environment. While experiences of workplace learning have been extensively investigated, practices of workplace learning explored through field work have been less utilized. The theoretical framework of teaching and learning regimes acknowledges aspects of power and conflict in its consideration of what guides teachers and learners in their practice of workplace learning. This study aimed to explore practices of workplace learning in the two adjacent healthcare professions; medicine and nursing. We adopted an ethnographic qualitative design. Field observations and follow-up interviews were performed in three clinical departments and the data set comprised 12 full days of observations and 16 formal follow-up interviews. Thematic analysis was performed deductively according to the theoretical framework. Four teaching and learning regimes were found in the data. In the medical context, workplace learning was either practiced as reproduction of current practice or through stimulation of professional development. In the nursing context, workplace learning was either based on development of partnership between student and supervisor or on conditional membership in a professional community. The medical and nursing contexts demonstrated varying underpinnings and assumptions relating to teaching and learning. The respective practices of workplace learning in the medical and nursing context appear to hold substantial differences which might have implications for how we understand practices of workplace learning. We further conclude that the theoretical framework of teaching and learning regimes in this study proved useful in exploring workplace learning.
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Estudiantes de Medicina , Estudiantes de Enfermería , Humanos , Investigación Cualitativa , Aprendizaje , Lugar de TrabajoRESUMEN
This article explores experiences of teaching qualitative research (QR) broadly, and qualitative methods (QM) more specifically in medicine, highlighting the challenges faced, and offering recommendations for overcoming them. Using collective online interviews, collaborative autoethnography (CAE) was employed to generate data comprising educator's reflective accounts of teaching QM in medical schools across two continents. Three main themes were identified through collaborative thematic analysis: making meaningful contributions from a marginalized position; finding our pedagogical feet; and recognizing the translational applicability and value of QR. We reflected on the marginalized positioning of QM in medical curricula and the underestimation of the value of QR to understanding pressing health issues. Analysis of these reflections pointed to a lack of formal training for educators and curriculum space for qualitative approaches. Our teaching pedagogies, developed through our own research experiences, self-reflection and student feedback, were primarily student-centered employing a range of novel approaches designed to foster skills and interest in the craft of QR, and introduce a greater appreciation of the significance of QR approaches to medicine. CAE further allowed us to identify some key recommendations that could help medical educators plan for teaching QM and other research methods more effectively in medicine. Future curriculum development should consider the benefits of exposing learners to a range of methods and approaches from across the qualitative-quantitative spectrum.
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Curriculum , Medicina , Humanos , Investigación Cualitativa , Estudiantes , Proyectos de Investigación , EnseñanzaRESUMEN
BACKGROUND: A growing body of research has clarified that sleep is influenced not only by biological factors but also by social factors. While studies have shown that social norms can affect sleep behavior and sleeping arrangements, including when, where, how, and with whom people sleep, researchers still know relatively little about how social norms affect sleep health, especially among adults. The current study explores the association between social norms and sleep health in the Israeli context. METHODS: Data were drawn from semi-structured, in-depth interviews with 66 Israelis-including women and men, Arabs and Jews, and religious and non-religious persons-conducted between February 2020 and February 2022. This article focuses on responses to a set of questions about the comments people make or hear from others about their sleep. Exploring how people comment on the sleep of others highlights prevalent social norms around sleep. RESULTS: Findings indicate that how sleep is "done" is policed by family and community members who react to norm violations by commenting on what is perceived as "inappropriate" sleep behavior. Comments were made in jest or earnest in response to breaches of social norms regarding sleep timing, duration, continuity, and alertness/sleepiness, indicating that social norms and expectations shape each of these sleep health dimensions. CONCLUSIONS: This article expands the scholarly understanding of the social determinants of sleep health. The study concludes that since individuals may opt to conform to current social norms, which are enforced by members of the family and community, interventions aimed at promoting sleep health should target not only individuals but also the family and community.
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Árabes , Normas Sociales , Adulto , Masculino , Humanos , Femenino , Israel/epidemiología , Investigación Cualitativa , SueñoRESUMEN
BACKGROUND: The COVID-19 pandemic and subsequent public health restrictions created significant challenges for children with neurodevelopmental disabilities with medical complexity and their caregivers including restrictions in care coordination for children and their families. Care coordination enhances families' skills in accessing and coordinating medical, education and disability care across sectors and systems. OBJECTIVE: This study examined the implications of pandemic restrictions on care coordination from caregiver perspectives. These experiences can inform emergency preparedness planning and recovery strategies. METHOD: A qualitative descriptive design was utilized to explore and describe the experience of caregivers of children with neurodevelopmental disabilities and medical complexity. Nineteen caregivers were interviewed about their experience with care coordination during the pandemic. FINDINGS: Caregiver experiences of care coordination during the pandemic highlighted the importance of care coordination during a public health emergency. Two themes emerged: (1) disruptions to care coordination from initial COVID-19 restrictions leading to lack of access to supports and services, increasing level of need, and impacts of disruption for caregivers and children; and (2) adaptation and responsiveness to COVID-19 restrictions by advocating for families and managing uncertainties. RECOMMENDATIONS: Recommendations include recognition of care coordination as a protective factor, designation as an essential service and sustained or increased funding for care coordination during emergencies. Families should be engaged in identifying care needs during care coordination, including during public health emergencies.
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COVID-19 , Cuidadores , Niño , Humanos , Pandemias , Urgencias Médicas , COVID-19/epidemiologíaRESUMEN
The COVID-19 pandemic has pushed health policy frontstage and exposed the stark differences in government capacities to respond to the crisis. This has created new demands for comparative heath policy to support knowledge creation on a large scale. However, comparative health policy has not necessarily been well prepared; studies have focused on health systems and used typologies together with descriptive, quantitative methods. This makes it difficult to capture the multi-level nature of health policy, the diverse actors involved and the many societal facets of governance performance. We argue for broadening the perspective to include health policy as a bottom-up process with diverse interests. This calls for expanding the methodology of comparative health policy by also using approaches that make greater use of explorative, qualitative research. We introduce possible developmental pathways to illustrate what this may look like. The Pan-European Commission shows how to broaden the definition of comparative health policy, notably as transnational and planetary. The gender analysis matrix illustrates how comparative health policy can strengthen its assessment of performance by focussing on gender equity. The street-level bureaucrat framework highlights how analysing frontline work can help conduct small-scale bottom-up comparisons of health policy. Together, these developmental pathways demonstrate the potential to broaden comparative health policy towards greater responsiveness to the societal performance of governments, such as social inequalities created by the COVID-19 pandemic. This also opens opportunities for strengthening the global outlook of comparative health policy.
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COVID-19 , Humanos , Pandemias/prevención & control , Política de SaludRESUMEN
BACKGROUND: Prognostic avoidance can delay discussions about older hospital patients' life expectancy. This pilot study examined the effects of a prognostic training program on hospital clinicians' knowledge and confidence in identifying older patients at risk of dying. METHODS: Fifty-seven clinicians from aged care assessment teams at two Australian hospitals were introduced to the Palliative Prognostic Index, a 5-item checklist indicating prognoses between 3 and 6 weeks. Mixed-methods training evaluation included pre-post-training surveys and semi-structured interviews, conducted three months post-training. RESULTS: Clinicians used a combination of experience, knowledge, and intuition as strategies to generate prognoses. Allied health staff relied on intuition more often than medical and nursing staff. Prognostic tools were rarely used. Pre-post-training comparisons showed significant improvements in clinicians' knowledge and confidence in identifying signs of dying, particularly amongst allied health. Follow-up interviews highlighted advantages and challenges of using prognostic tools. Recommendations are made for addressing these.
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Hospitales , Cuidado Terminal , Humanos , Anciano , Incertidumbre , Investigación Cualitativa , Pronóstico , Proyectos Piloto , Australia , Cuidados Paliativos , Cuidado Terminal/métodosRESUMEN
Objective This study explores how ageism in therapists is manifested in psychotherapy with older adults and how therapists deal with its impact on their therapeutic work. Method: Semi-structured interviews were conducted with 14 therapists and analyzed using grounded theory methodology. Results: Findings clustered around two themes: (i) maintaining openness to change while acknowledging limitations; (ii) dealing with manifestations of ageism inside therapy by going beyond relating to older patients only in terms of their chronological age. Conclusions: Our findings indicate that while therapists maintain an optimistic view regarding the possibility of therapeutic change, the therapeutic encounter with older patients triggers certain ageist therapeutic biases and behaviors in therapists, even in experienced therapists who have competency in working with older adults. Our findings also indicate that dealing with therapists' ageism in psychotherapy with older patients requires therapists not only to be aware in advance of their ageist attitudes but also to continuously engage in the management of the manifestations of ageism inside treatment. We use the conceptual framework of countertransference to suggest an understanding of the relationship between therapists' ageism and the therapeutic process. Implications for training and practice are discussed.
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Ageísmo , Humanos , Anciano , Psicoterapia/métodos , ContratransferenciaRESUMEN
Objective: The use of qualitative methods for investigating causation has been controversial ever since the "paradigm wars" of the 1980s. Quantitative and experimental researchers have largely dismissed the relevance of qualitative research for causal investigations, while many qualitative researchers have rejected the concept of causation entirely. However, a growing number of scholars, in both research methods and philosophy, have proposed an alternative perspective, one that sees quantitative and qualitative approaches as having complementary strengths and limitations in understanding causation. In this article, we consider this perspective in relation to the study of causality in psychotherapy research. Method: This paper reviews and integrates key descriptions of the mechanisms for identifying causal processes using qualitative research. Results: An overview of how qualitative methods study causation is presented, considering its implications for both identifying causality and for generalizing causal conclusions. Conclusion: The paper holds relevance for establishing outcomes caused by psychotherapy treatments and for developing clinical practice guidance for the field.
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Psicoterapia , Proyectos de Investigación , Humanos , Causalidad , Investigación Cualitativa , InvestigadoresRESUMEN
OBJECTIVE: In-session processing of emotions is important in facilitating psychotherapeutic change. This study explores how clients in active treatment experience inner changes when sharing emotions in psychotherapy sessions. The aim was to retrieve in-depth knowledge about clients' moment-by-moment experiences of change in a naturalistic psychotherapy context. METHOD: Two psychotherapy sessions (session 3 or 4 and session 7 or 8) were videotaped and immediately followed by semi-structured interviews with clients (n = 11) in the format of Interpersonal Process Recall (IPR). Interviews were analysed using thematic analysis. RESULTS: Four themes resulted from analysis: (1) reaching a new clarity about inner struggles; (2) a shift in how I approach and experience my feelings; (3) grieving losses and gaining a more positive understanding of myself; (4) feeling relief and liberation when allowing difficult emotions. CONCLUSION: The resulting themes took into account the importance of the felt quality of change experiences within sessions, which appears to be important in making micro-processes of change salient. Across themes, we found accounts of shifts in awareness and self-compassion, which we discuss as micro-outcomes that clients can ideally be guided to dwell with.
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INTRODUCTION: Objective: Trainings in cross-cultural competence1 are of increasing importance for psychotherapists in order to provide adequate mental health care for patients with a migration background. Yet, little is known about practitioners´ perspectives on working with migrants. Method: Problem-centered interviews with 30 practitioners offering psychotherapy within the German mental health care system have been analyzed using Grounded Theory Methodology to get an insight into practitioners´ experiences with cross-cultural work. Results: Practitioners have to deal with strong feelings of insecurity in their cross-cultural work. Feelings of insecurity were influenced by practitioners' underlying cultural concepts, how specific they perceived the cross-cultural contact to be and how they saw themselves in their professional role as psychotherapists. Interestingly, the analysis shows that trainings in cross-cultural competence which mainly convey "culture specific" knowledge on a rather theoretical level might even increase practitioners' feelings of insecurity. Conclusions: Conventional teaching formats in cross-cultural competence might not provide psychotherapists with sufficient space to reflect on their insecurities, their "cultural concepts", and their expectations of themselves in their professional role. Therefore, other settings are required. Dealing with practitioners' perceived lack of knowledge in the context of culture could be an effective starting point to deal with cross-cultural insecurities.
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Competencia Cultural , Psicoterapia , Humanos , Competencia Cultural/psicología , EmocionesRESUMEN
The scholarly debate on advance directives (ADs) in the context of dementia is mainly built around ethical arguments. Empirical studies that shed light into the realities of ADs of persons living with dementia are few and far between and too little is known about the effect of national AD legislation on such realities. This paper offers insight into the preparation phase of ADs according to German legislation in the context of dementia. It presents results from a document analysis of 100 ADs and from 25 episodic interviews with family members. Findings show that drafting an AD involves family members and different professionals in addition to the signatory, whose cognitive impairment differed considerably at the time of preparing the AD. The involvement of family members and professionals is at times problematic, which prompts the question of how much and what kind of involvement of others turns an AD of a person living with dementia into an AD about a person living with dementia. The results invite policy makers to critically review legislation on ADs from the perspective of cognitively impaired persons, who might find it difficult to protect themselves from inappropriate involvement when completing an AD.
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BACKGROUND: Informal caregivers of persons with dementia (PWDs) sometimes engage foreign domestic workers (FDWs) to support their caregiving journey. However, there has not been much research to establish if this is really beneficial. The current study aims to investigate whether engaging FDWs specifically for caregiving of PWDs truly moderates caregiver stress and to explore caregivers' experiences of engaging FDWs. METHODS: A multi-method study design with a quantitative and qualitative sub-study was adopted. For the quantitative sub-study, 282 informal caregivers of PWDs were recruited. Propensity score matching analysis was used. For the qualitative sub-study, 15 informal caregivers with FDWs were interviewed. Inductive thematic analysis was conducted. RESULTS: The quantitative sub-study confirmed that engaging FDWs did moderate the depressive symptoms of informal dementia caregivers (marginal effect = -3.35, p = 0.0497). However, such support did not affect their caregiving burden, self-efficacy, and perceived positive aspects of caregiving. The qualitative sub-study suggested that engaging FDWs is an ambivalent experience, which entails both support and challenges. CONCLUSIONS: The current study confirmed previous research findings, that engaging FDWs moderated depressive symptoms among caregivers of PWDs, and it could be through their physical support such as in daily caregiving activities. Policy-makers may consider providing more subsidies to caregivers caring for PWDs with mobility issues to hire FDWs. They may also consider providing training to FDWs on dementia caregiving skills and improving the intake of such training as this might be helpful for both FDWs and caregivers during this journey.
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Cuidadores , Demencia , Humanos , Internacionalidad , Investigación Cualitativa , Singapur/epidemiologíaRESUMEN
BACKGROUND: Children with learning disabilities (LD) are more likely to have health conditions that require hospital attendance than children without LD. Like all children, they can experience fear and distress related to procedural anxiety. Parents play a key role in managing procedural anxiety in children with LD. No previous published qualitative studies have explored parental experiences of caring for a child with LD and procedural anxiety in hospital. OBJECTIVES: To explore how parents experienced caring for their child with LD and procedural anxiety in hospital. METHODS: A purposive sample of six participants were recruited through a Facebook group for parents of children with LD. Remote semi-structured interviews were conducted via telephone, Microsoft Teams or Whatsapp. Interviews were transcribed verbatim and analysed using interpretative phenomenological analysis. RESULTS: Five key themes were generated: (1) Emotional toll: parents characterized their experiences as highly emotional; reporting feeling stressed, anxious and worried. (2) Restraint and holding: parents spoke of their experiences of restraint which was largely viewed as negative and sometimes inappropriate. (3) Advocacy: parents articulated their responsibility as advocates for their children. (4) Going it alone: parents were extremely proactive in managing their child's anxieties but some also felt highly-pressurized and isolated. (5) Inconsistency and uncertainty: parents experienced inconsistency and uncertainty in their children's care from healthcare professionals which led to anxiety and frustration. CONCLUSION: Parents of children with both LD and procedural anxiety experienced many challenges. Parents' expertise must be utilized by clinicians when caring for children with LD and procedural anxiety whilst ensuring appropriate support for parents. Nurses require specific training in psychosocial interventions to enhance care for children with LD and procedural anxiety. Further research identifying effective nursing strategies to enhance parental experiences would be beneficial to improve care to this patient group.
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Discapacidades para el Aprendizaje , Padres , Ansiedad , Niño , Familia/psicología , Hospitales , Humanos , Padres/psicología , Investigación CualitativaRESUMEN
BACKGROUND: Good quality friendships and relationships are critical to the development of social competence and are associated with quality of life and mental health in childhood and adolescence. Through social distancing and isolation restrictions, the COVID-19 pandemic has had an impact on the way in which youth socialize and communicate with friends, peers, teachers and family on a daily basis. In order to understand children's social functioning during the pandemic, it is essential to gather information on their experiences and perceptions concerning the social changes unique to this period. The objective of this study was to document children and adolescents' perspectives regarding their social life and friendships during the COVID-19 pandemic, through qualitative interviews. METHODS: Participants (N = 67, 5-14 years) were recruited in May and June 2020. Semi-structured interviews were conducted via a videoconferencing platform. A thematic qualitative analysis was conducted based on the transcribed and coded interviews (NVivo). RESULTS: The upheavals related to the pandemic provoked reflection among the participants according to three main themes, each of which included sub-themes: (1) the irreplaceable nature of friendship, (2) the unsuspected benefits of school for socialization and (3) the limits and possibilities of virtual socialization. CONCLUSIONS: The collection of rich, qualitative information on the perspectives of children and adolescents provides a deeper understanding of the consequences of the pandemic on their socialization and psychological health and contributes to our fundamental understanding of social competence in childhood.