Search results for: lived%20experience
Commenced in January 2007
Frequency: Monthly
Edition: International
Paper Count: 475

Search results for: lived%20experience

445 Learnings From Sri Lanka: Theorizing of Grassroots Women’s Participation in NGO Peacebuilding Activism Against Transnational and Third-World Feminist Perspectives

Authors: Piumi L. Denagamage, Vibusha Madanayake

Abstract:

At the end of a 30-year civil war in Sri Lanka in 2009, Non-Governmental Organizations (NGOs) played a prominent role in post-war development and peacebuilding. Women were a major “beneficiary” of NGO activities on socio-economic empowerment, capacity building for advocacy, and grassroots participation in activism. Undoubtedly, their contribution to Sri Lanka’s post-war transition is tremendous. As development practitioners and researchers who have worked closely with several international and national NGOs in Sri Lanka’s post-war setting, the authors, while practicing self-reflexivity, intend to theorize the grey literature prepared by NGOs against the theoretical frameworks of Transnational and Third World feminisms. Using examples of the grassroots activities conducted by the NGOs with war-affected women, the paper questions whether Colombo-based feminism represents the lived realities of grassroots women at the transnational level. It argues that Colombo-based feminists use their power and exposure to Western feminist approaches to portray diverse forms of oppression women face at grassroots levels, their needs for advocacy, and different modes of resistance on the ground. Many NGOs depend on international donor funding for their grassroots work, which also contributes to their utilization of Western-led knowledge. Despite their efforts to “save marginalized women from oppression,” these modes of intervention are often rejected by the public, including women at local levels. This has also resulted in the rejection of feminism entirely as a culturally root-less alien Western ideology. The analysis connects with the Transnational and Third World theoretical feminist perspectives to problematize the power relations between Western knowledge systems and the lived experiences of grassroots women in the peacebuilding process through NGO activism in Sri Lanka. It also emphasizes that the infiltration of Western knowledge through NGOs has led to the participation of grassroots women only through adjustments of their lived experiences to match the alien knowledge rather than theorizing based on their own lived realities. While sharing a concern that NGOs’ power to adopt Western knowledge systems is often unchecked and unmitigated, the paper signifies the importance of adopting the methods of alternative theorizing to ensure meaningful participation of Third World women in peacebuilding.

Keywords: alternative theorizing, colombo-based feminism, grassroots women in peacebuilding, NGO activism, transnational and third world feminisms

Procedia PDF Downloads 55
444 A Grounded Theory on Marist Spirituality/Charism from the Perspective of the Lay Marists in the Philippines

Authors: Nino M. Pizarro

Abstract:

To the author’s knowledge, despite the written documents about Marist spirituality/charism, nothing has been done concerning a clear theoretical framework that highlights Marist spirituality/charism from the perspective or lived experience of the lay Marists of St. Marcellin Champagnat. The participants of the study are the lay Marist - educators who are from Marist Schools in the Philippines. Since the study would like to find out the respondents’ own concepts and meanings about Marist spirituality/charism, qualitative methodology is considered the approach to be used in the study. In particular, the study will use the qualitative methods of Barney Glaser. The theory will be generated systematically from data collection, coding and analyzing through memoing, theoretical sampling, sorting and writing and using the constant comparative method. The data collection method that will be employed in this grounded theory research is the in-depth interview that is semi-structured and participant driven. Data collection will be done through snowball sampling that is purposive. The study is considering to come up with a theoretical framework that will help the lay Marists to deepen their understanding of the Marist spirituality/charism and their vocation as lay partners of the Marist Brothers of the Schools.

Keywords: grounded theory, Lay Marists, lived experience, Marist spirituality/charism

Procedia PDF Downloads 309
443 Sexual Risk Behaviours of High School Students in an Urban Town of Cameroon

Authors: Elvis Enowbeyang Tarkang

Abstract:

Background: Since students in high schools in Cameroon fall within the age group hardest hit by HIV/AIDS, it is assumed that these students might be exposed to sexual risk behaviours. Sexual risk behaviours include engaging in unprotected sexual intercourse, early sexual debut, multiple sexual partners and coerced or forced sex, and these behaviours might predispose youth to HIV transmission. However, little has been explored on the sexual risk behaviours of high school learners in Cameroon. This study aimed at examining the sexual risk behaviours of high school students in an urban town of Cameroon. Method: A quantitative cross sectional design was adopted, using a self-administered questionnaire to collect data from a disproportional stratified simple random sample of 480 (240 male and 240 female) grade 10 to grade 12 students from two participating secondary school in Limbe in the Southwest region of Cameroon August 2014. Descriptive and Chi square statistics were calculated using statistical Package for Social Sciences (SPSS) version 20 software program at the level 0.05. Results: Majority of the respondents, 63.4% reported being sexually active, of whom only 33.2% used condoms consistently. Up to 37% of the sexually active respondents had multiple sexual partners in the past one year before the study, while 23% had multiple sexual partners during the study period. The mean age of first sex was 15.4 years. Among Christians, Pentecostals, 17 (58.6%) were more likely to have experienced sexual coercion than non-Pentecostals, 111 (42.2%) (p= 0.000). Christians, 41 (10.3%) were more likely to have been forced into first sex than Muslims, 0 (0.0%); while among the Christians, Pentecostals, 6 (15.0%) were more likely to have been forced into first sex than non-Pentecostals, 35 (10.9%) (p=0.004). Among the Christians, Pentecostals, 16 (66.7%) were more likely to have experienced sex by age 16 years than non-Pentecostals, 125 (64.1%) (p= 0.000). Students who lived in rented places, 32 (22.7%) were more likely to have had multiple sexual partners than those who lived in their parents’ houses, 35 (18.1%) (p= 0.000). Males, 36 (16.0%) were likely to have had multiple concurrent sexual partners than females, 14 (6.0%) (p=0.002). Students who used condoms consistently, 25 (33.3%) were more likely to have a higher perception of risk of contracting HIV than those who did not use condoms consistently, 38 (29.9%) (p=0.002). Students who lived in their parents’ houses, 35 (35.4%) were more likely to use condoms consistently during sex, than those who lived in rented places, 31 (29.8%) (p=0.021). Students who passed their examinations, 57 (30.9%) were more likely to have used condoms consistently than those with low academic profiles, 24 (27.9%) (p= 0.034). Conclusions and Recommendations: Gender, lack of parental control, religion, academic profile, poverty, place of residence and perception of risk of HIV infection were the main factors associated with sexual risk behaviours among students in urban Cameroon. The findings indicate that sexual risk behaviours exist among high school students in Limbe urban town of Cameroon. There is need for campaigns and interventions to bring about sexual behaviour change.

Keywords: Cameroon, high school students, HIV/AIDS, Limbe urban town, sexual risk behaviours

Procedia PDF Downloads 331
442 Songkran Tradition: An Invented Tradition of Thai Buddhists and Thai Muslims for Peace and Happiness in Southern Thailand

Authors: Utit Sungkharat

Abstract:

Purpose: To investigate an invented tradition of Thai Buddhists and Thai Muslims for peace. Methods: The data for this qualitative research were collected from related documents and research reports, field data, and in-depth interviews with Buddhist and Muslim religious leaders and people in the community. Results: The results of the research revealed that Thai Buddhists and Thai Muslims in Tamod Community in the Southern part of Thailand who have lived in the same community and shared the same history of the community jointly invented the Songkran tradition holding on to the reason that they have lived in the same community founded by the same person. The reason for inventing this tradition is that Songkran is a tradition for paying respect to ancestors who passed away and people in Tamod have the same ancestor even though they believe in different religions. Therefore, paying respect to the ancestors can be performed together by people of the two religions. The invented tradition has not only united them and empowered them to drive their community to development but also brought peace and happiness to this community.

Keywords: invented tradition, Thai Buddhists, Thai Muslims, peace

Procedia PDF Downloads 350
441 The Impact of Social Emotional Learning and Conflict Resolution Skills

Authors: Paula Smith

Abstract:

During adolescence, many students engage in maladaptive behaviors that may reflect a lack of knowledge in social-emotional skills. Oftentimes these behaviors lead to conflicts and school-related disciplinary actions. Therefore, conflict resolution skills are vital for academic and social success. Conflict resolution is one component of a social-emotional learning (SEL) pedagogy that can effectively reduce discipline referrals and build students' social-emotional capacity. This action research study utilized a researcher-developed virtual SEL curriculum to provide instruction to eight adolescent students in an urban school in New York City with the goal of fostering their emotional intelligence (EI), reducing aggressive behaviors, and supporting instruction beyond the core academic content areas. Adolescent development, EI, and SEL frameworks were used to formulate this curriculum. Using a qualitative approach, this study inquired into how effectively participants responded to SEL instruction offered in virtual, Zoom-based workshops. Data included recorded workshop sessions, researcher field notes, and Zoom transcripts. Descriptive analysis involved manual coding/re-coding of transcripts to understand participants’ lived experience with conflict and the ideas presented in the workshops. Findings highlighted several themes and cultural norms that provided insight into adolescents' lived experiences and helped explain their past ideas about conflict. Findings also revealed participants' perspectives about the importance of SEL skills. This study illustrates one example of how evidence-based SEL programs might offer adolescents an opportunity to share their lived experiences. Programs such as this also address both individual and group needs, enabling practitioners to help students develop practical conflict resolution skills.

Keywords: social, emotional, learning, conflict, resolution

Procedia PDF Downloads 13
440 The Lived Experience of People with a Mental Illness of Their Engagement in Therapeutic Recreation

Authors: Caroline Picton, Lorna Moxham, Christopher Patterson, Dana Perlman, Ellie Taylor, Renee Brighton

Abstract:

The purpose of this study was to extrapolate the meaning for people living with a mental illness of their participation in a therapeutic recreation experience. The study’s participants engaged in a five-day adventure camp, known as Recovery Camp, alongside undergraduate health care students. An interpretive phenomenological approach was used as an exploratory method to interview 25 participants (n=25). Van Kaam’s structured analytical framework guided the analysis of the transcribed narratives. The findings provide insight into using therapeutic recreation to enhance personal mental health recovery. Recovery Camp was viewed by participants as having a transformational effect on forming positive social connectedness and improving their self-identity. Participants perceived the Recovery Camp experience as one that gave them a sense of purpose and increased their motivation to undertake further activities. The insights gained of the benefits of therapeutic recreation for people living with a mental illness can be used to promote purposeful community engagement.

Keywords: interpretive phenomenology, lived experience, mental illness, personal mental health recovery

Procedia PDF Downloads 498
439 The Lived Experience of Pregnant Saudi Women Carrying a Fetus with Structural Abnormalities

Authors: Nasreen Abdulmannan

Abstract:

Fetal abnormalities are categorized as a structural abnormality, non-structural abnormality, or a combination of both. Fetal structural abnormalities (FSA) include, but are not limited, to Down syndrome, congenital diaphragmatic hernia, and cleft lip and palate. These abnormalities can be detected in the first weeks of pregnancy, which is almost around 9 - 20 weeks gestational. Etiological factors for FSA are unknown; however, transmitted genetic risk can be one of these factors. Consanguineous marriage often referred to as inbreeding, represents a significant risk factor for FSA due to the increased likelihood of deleterious genetic traits shared by both biological parents. In a country such as the Kingdom of Saudi Arabia (KSA), consanguineous marriage is high, which creates a significant risk of children being born with congenital abnormalities. Historically, the practice of consanguinity occurred commonly among European royalty. For example, Great Britain’s Queen Victoria married her German first cousin, Prince Albert of Coburg. Although a distant blood relationship, the United Kingdom’s Queen Elizabeth II married her cousin, Prince Philip of Greece and Denmark—both of them direct descendants of Queen Victoria. In Middle Eastern countries, a high incidence of consanguineous unions still exists, including in the KSA. Previous studies indicated that a significant gap exists in understanding the lived experiences of Saudi women dealing with an FSA-complicated pregnancy. Eleven participants were interviewed using a semi-structured interview format for this qualitative phenomenological study investigating the lived experiences of pregnant Saudi women carrying a child with FSA. This study explored the gaps in current literature regarding the lived experiences of pregnant Saudi women whose pregnancies were complicated by FSA. In addition, the researcher acquired knowledge about the available support and resources as well as the Saudi cultural perspective on FSA. This research explored the lived experiences of pregnant Saudi women utilizing Giorgi’s (2009) approach to data collection and data management. Findings for this study cover five major themes: (1) initial maternal reaction to the FSA diagnosis per ultrasound screening; (2) strengthening of the maternal relationship with God; (3) maternal concern for their child’s future; (4) feeling supported by their loved ones; and (5) lack of healthcare provider support and guidance. Future research in the KSA is needed to explore the network support for these mothers. This study recommended further clinical nursing research, nursing education, clinical practice, and healthcare policy/procedures to provide opportunities for improvement in nursing care and increase awareness in KSA society.

Keywords: fetal structural abnormalities, psychological distress, health provider, health care

Procedia PDF Downloads 154
438 Clinical Psychology Interns' Lived Experience with Suicidal Clients

Authors: Elaine Llantos Elayda, John Mark S. Distor

Abstract:

This paper explores the lived experiences of clinical psychology interns' who have encountered suicidal clients during their internship. Employing qualitative phenomenological investigation, semi-structured interviews were conducted and analyzed using interpretative phenomenological analysis (IPA). The study employed purposive sampling to gather valuable data. The results highlighted that those encounters with suicidal clients triggered various reactions among interns, leading to self-doubt and a sense of unpreparedness in handling such cases. Many interns struggled with managing their own emotions, especially when clients' traumas mirrored their own experiences. The study emphasized the importance of a robust support system in helping interns cope with the challenges of their work. Supervision and professional support played critical roles in interns' development, providing guidance and enhancing their confidence in managing distressing situations. Despite the challenges, the interns found purpose in witnessing significant client progress and emphasized the importance of self-care and ongoing training to prepare future clinicians for similar experiences.

Keywords: polytechnic university of the Philippines, clinical psychology interns, suicidal clients, clinical psychology training

Procedia PDF Downloads 26
437 Care as a Situated Universal: Defining Care as a Practical Phenomenology Study

Authors: Amanda Aliende da Matta

Abstract:

This communication presents an aspect of phenomenon selection in an applied hermeneutic phenomenology study on care and vulnerability: the need to consider it as a situated universal. For that, we will first present the study and its methodology. Secondly, we will expose the need to understand phenomena as situation-defined, incorporating feminist thought. In an informatics class for 14 year olds, we explained the exercise: students have to make a 5 slide presentation about a topic of their choice. A does it on streetwear, B on Cristiano Ronaldo, C on Marvel, but J did it on Down Syndrome. Introducing it to the class, J explains the physical and cognitive differences caused by trisomy; when asked to explain it further, he says: "they are angels, teacher," and shows us a poster on his cellphone that says: if you laugh at a different child he will laugh with you because his innocence outweighs your ignorance. The anecdote shows, better than any theoretical explanation, something that some vulnerable people have; something beautiful and special but difficult to define. Let's call this something caring. The research has the main objective of accounting for the experience of caregiving in vulnerability, and it will be carried out with Applied Hermeneutic Phenomenology (AHP). The method's objective is to investigate the lived human experience in its pre-reflexive dimension to know its meaning structures. Contrary to other research methods, AHP does not produce theory about a specific context but seeks the meaning of the lived experience, in its characteristic of human experience. However, it is necessary that we understand care as defined in a concrete situation. We cannot start the research with an a priori definitive concept of care, or we would fall into the mistake of closing ourselves to only what we already know, as explained by Levinas. We incorporate, then, the notion of situated universals. Loyal to phenomenology, the definition of the phenomenon should start with an investigation of the word's etymology: the word cura, in its etymological root, means care. And care comes from the Latin word cogitātus/cōgĭto, which means "to pursue something in mind" and "to consider thoroughly." The verb cōgĭto, meanwhile, is composed of co- (altogether) and agitare (to deal with or think committedly about something, to concern oneself with) / ăgĭto (to set in motion, to move). Care, therefore, has in its origin a meditation on something, a concern about something, a verb that has a sense of action and movement. To care is to act out of concern for something/someone. This etymology, though, is not the final definition of the phenomenon, but only its skeleton. It needs to be embodied in the concrete situation to become a possible lived experience. And that means that the lived experience descriptions (LEDs) should be selected by taking into consideration how and if care was engendered in that concrete experience. Defining the phenomenon has to take into consideration situated knowledge.

Keywords: applied hermeneutic phenomenology, care ethics, hermeneutics, phenomenology, situated universalism

Procedia PDF Downloads 88
436 The Lived Experience of Thai Mothers Living with HIV in Southern Thailand

Authors: Dusanee Suwankhong, Pranee Liamputtong

Abstract:

Mothers living with HIV tend to experience stigma and discrimination which has an impact on their psychological and social well-being and their human rights. This paper explores the lived experience of Thai mothers with HIV in their family. In-depth interviewing and drawing methods were employed to gain a deep understanding on the experience of 30 HIV-positive mothers in the southern community of Thailand. The data was analyzed using thematic analysis method. We found that the majority of HIV-positive mothers learned about their HIV status through blood test services during their antenatal care, but some decided to visit a doctor when their partner became chronically frail and showed some signs indicating HIV/AIDS. Learning about their HIV gave them a great shock, and they could not believe that they were infected with HIV/AIDS. They feared that their illness would be disclosed and hence attempted to keep their HIV secret. This was due to the fact that people in their community would blame and labeled them as a ‘disgusting person’. Besides, they would be separated from social contacts and networks, their individual rights would be disregarded, and their potential roles would be restricted. Although participants suggested that people had more positive view on HIV-infected person nowadays, all still wanted to keep it secret because of fear of stigma and discrimination. Thai health care has provided various kinds of support programs, but many mothers chose not to participate due to the fear of disclosure. However, the women attempted to seek some strategies to live a life which would be more acceptable by the community. We conclude that HIV is still seen as a stigmatised disease in rural community of southern Thailand. Local health care providers and relevant sectors in the locality should create suitable programs to enhance self-worth among those HIV-positive mothers because this could increase a quality of life of this vulnerable mothers. Providing sufficient and appropriate supports for better emotional wellbeing is an essential role of health professionals so that the feeling of isolation among these women could be eliminated and positive social justice can be achieved.

Keywords: HIV-positive mothers, lived experience, southern Thailand, stigma and discrimination

Procedia PDF Downloads 187
435 Understanding Level 5 Sport Student’s Perspectives of the Barriers to Progression and Attainment

Authors: Emma Whewell, Lee Waters, Mark Wall

Abstract:

This paper is a mixed methods investigation into the perceived barriers to attainment and progression. Initially entry level data was analysed to identify some of the key characteristics of the student cohort- for example entry route, age and ethnic background. Secondly, a phenomenological case study of the lived experiences of 15 level 5 sport and exercise students was conducted. It aimed to understand the complexities of success in higher education, far beyond entry qualifications, indices of deprivation and POLAR characteristics, to offer a first-hand account of student perceptions and interpretations of the barriers they face in progression, retention and completion on their programme. Using focus groups and interviews with students from a range of indices we offer a set of rich case studies exploring the interpretations of our students’ lived experiences and challenges. Findings demonstrate a complex set of circumstances that centre on managing workload, use of support services and aspirations of students that conflict with university priorities. Conclusions centre on the role of academic and pastoral support, assumptions about priorities of students and practical interventions to support achievement.

Keywords: access and participation, higher education, progression and retention, barriers

Procedia PDF Downloads 107
434 Assessing the Preparedness of Teachers for Their Role in an Inclusive Classroom: Photo-Voice as a Reflexive Tool

Authors: Nan Stevens

Abstract:

Photo-voice is a participatory method through which participants identify and represent their lived experiences and contexts through the use of photo imagery. Photo-voice is a qualitative research method that explores individuals’ lived experiences. This method is known as a creative art form to help researchers listen to the 'voice' of a certain population. A teacher educator at Thompson Rivers University, responsible for preparing new teachers for the demands of the profession in an ever-changing demographic, utilized the Photo-voice method to enable a self-study of emerging teachers’ readiness for the inclusive classroom. Coding analysis was applied to 96 Photo-voice portfolios, which were created over two years with the Inclusive Education course work, in a Bachelor of Education program (Elementary). Coding utilized students’ written associations to their visual images, anecdotes attached to visual metaphors, and personal narratives that illustrated the professional development process in which they were engaged. Thematic findings include: 1) becoming an inclusive educator is a process; 2) one must be open to identifying and exploring their fear and biases, and 3) an attitudinal shift enables relevant skill acquisition and readiness for working with diverse student needs.

Keywords: teacher education, inclusive education, professional development, Photo-voice

Procedia PDF Downloads 133
433 Radon and Thoron Determination in Natural Ancient Mine Using Nuclear Track Detectors: Radiation Dose Assessment

Authors: L. Oufni, M. Amrane, R. Rabi

Abstract:

Radon (and thoron) is a naturally occurring radioactive noble gas, having variable distribution in the geological environment. The exposure of human beings to ionizing radiation from natural sources is a continuing and inescapable feature of life on earth. Radon, thoron and their short-lived decay products in the atmosphere are the most important contributors to human exposure from natural sources. The aim of this study is to determine alpha-and beta-activities per unit volume of air due to radon (222Rn), thoron (220Rn) and their progenies in the air of ancient mine of Aouli in which there is no working activity is situated at approximately 25 km north of the city of Midelt (Morocco), by using LR-115 type II and CR-39 solid state nuclear track detectors (SSNTDs). Equilibrium factors between radon and its daughters and between thoron and its progeny were evaluated in the studied atmospheres. The committed equivalent doses due to the 218Po and 214Po radon short-lived progeny were evaluated in different tissues of the respiratory tract of the visitors of the considered ancient mine. The visitors in these mines spent a good amount of time. It was essential to let the staff know about these values and take the needed steps to prevent any health complications.

Keywords: radon, thoron, concentration, exposure dose, SSNTD, mine

Procedia PDF Downloads 534
432 A Hybrid Curriculum: Privileging Indigenous knowledges Over Western knowledges In The School Curriculum In Kenya

Authors: Rose Mutuota

Abstract:

Western knowledge have influenced the Kenyan education system through colonisation and policies borrowed from the global North. Researchers argue that studies of education and systems based on Northernframeworks ignore the lived experiences of the global South. The history of colonization is one such example. In light of this, there is a need for schools to consider the lived experience of the Kenyan child and integrate Indigenous knowledge in the education system. The study reported here explored the possibility of creating a blended/hybrid curriculum that values Indigenous knowledge and practices but also selectively use side as from the global North. Acasestudyformat was employed. Teachers and principals in four schools were interviewed. The findings indicated that teachers and students brought indigenous knowledge to the classroom but were limited in their use by existing educational policies.AnotherfindingwasthatpoliciesborrowedfromtheglobalNorthdid not suit the context in the Southincountries with a history of colonization. There was the need for policymakers to ensure the policies borrowed from the North suit the Kenyan context. The recommendations included the deliberate and mandated use of indigenous knowledge in classrooms including indigenous languages for instruction, the use of locally available assets to support students with disabilities in mainstream classrooms, and the use of a hybrid curriculum that privileges indigenous knowledge over Westernknowledgesintheschoolcurriculum.

Keywords: global North, global South, inclusive educate indigenous knowledges

Procedia PDF Downloads 199
431 An Ethnographic Study on Peer Support Work-Ers in a Peer Driven Non Governmental Organization: The Colorado Mental Wellness Network

Authors: Shawna M. Margesson

Abstract:

This research study seeks to explore the lived experience of peer support workers (PSWs) in a peer-led non-governmental organization in Denver, Colorado, USA. The Colorado Mental Wellness Network offers supportive wellness recovery services such as wellness recovery action plans (WRAP), advocacy trainings for anti-stigma campaigns, and PSWs to work with and for consumers in the community. This study suggests that a peer-run environment is a unique community setting for PSWs to work given all employees are living in mental wellness recovery. Little has been documented about PSWs' personal accounts of working within a recovery-oriented organization and their first-person accounts to working with consumers. The importance of this study is to provide an ethnographic account of both subjects; the lived experiences of PSWs of both organizational and consumer-driven recovery. This study seeks to add to the literature and the social work profession the personal accounts of PSWs as they provide services to others like themselves. It also will provide an additional lens to view the peer-driven movement in mental health and wellness recovery.

Keywords: peer to peer movement, mental health, ethnography, peer support workers

Procedia PDF Downloads 162
430 Understanding the Experience of the Visually Impaired towards a Multi-Sensorial Architectural Design

Authors: Sarah M. Oteifa, Lobna A. Sherif, Yasser M. Mostafa

Abstract:

Visually impaired people, in their daily lives, face struggles and spatial barriers because the built environment is often designed with an extreme focus on the visual element, causing what is called architectural visual bias or ocularcentrism. The aim of the study is to holistically understand the world of the visually impaired as an attempt to extract the qualities of space that accommodate their needs, and to show the importance of multi-sensory, holistic designs for the blind. Within the framework of existential phenomenology, common themes are reached through "intersubjectivity": experience descriptions by blind people and blind architects, observation of how blind children learn to perceive their surrounding environment, and a personal lived blind-folded experience are analyzed. The extracted themes show how visually impaired people filter out and prioritize tactile (active, passive and dynamic touch), acoustic and olfactory spatial qualities respectively, and how this happened during the personal lived blind folded experience. The themes clarify that haptic and aural inclusive designs are essential to create environments suitable for the visually impaired to empower them towards an independent, safe and efficient life.

Keywords: architecture, architectural ocularcentrism, multi-sensory design, visually impaired

Procedia PDF Downloads 201
429 Making Meaning, Authenticity, and Redefining a Future in Former Refugees and Asylum Seekers Detained in Australia

Authors: Lynne McCormack, Andrew Digges

Abstract:

Since 2013, the Australian government has enforced mandatory detention of anyone arriving in Australia without a valid visa, including those subsequently identified as a refugee or seeking asylum. While consistent with the increased use of immigration detention internationally, Australia’s use of offshore processing facilities both during and subsequent to refugee status determination processing has until recently remained a unique feature of Australia’s program of deterrence. The commonplace detention of refugees and asylum seekers following displacement is a significant and independent source of trauma and a contributory factor in adverse psychological outcomes. Officially, these individuals have no prospect of resettlement in Australia, are barred from applying for substantive visas, and are frequently and indefinitely detained in closed facilities such as immigration detention centres, or alternative places of detention, including hotels. It is also important to note that the limited access to Australia’s immigration detention population made available to researchers often means that data available for secondary analysis may be incomplete or delayed in its release. Further, studies into the lived experience of refugees and asylum seekers are typically cross-sectional and convenience sampled, employing a variety of designs and research methodologies that limit comparability and focused on the immediacy of the individual’s experience. Consequently, how former detainees make sense of their experience, redefine their future trajectory upon release, and recover a sense of authenticity and purpose, is unknown. As such, the present study sought the positive and negative subjective interpretations of 6 participants in Australia regarding their lived experiences as refugees and asylum seekers within Australia’s immigration detention system and its impact on their future sense of self. It made use of interpretative phenomenological analysis (IPA), a qualitative research methodology that is interested in how individuals make sense of, and ascribe meaning to, their unique lived experiences of phenomena. Underpinned by phenomenology, hermeneutics, and critical realism, this idiographic study aimed to explore both positive and negative subjective interpretations of former refugees and asylum seekers held in detention in Australia. It sought to understand how they make sense of their experiences, how detention has impacted their overall journey as displaced persons, and how they have moved forward in the aftermath of protracted detention in Australia. Examining the unique lived experiences of previously detained refugees and asylum seekers may inform the future development of theoretical models of posttraumatic growth among this vulnerable population, thereby informing the delivery of future mental health and resettlement services.

Keywords: mandatory detention, refugee, asylum seeker, authenticity, Interpretative phenomenological analysis

Procedia PDF Downloads 93
428 Interrogating the Theoretical Basis of the Freedom Charter in South Africa

Authors: Sibonginkosi Mazibuko

Abstract:

The “adoption” of the Freedom Charter in 1955 at Kliptown south of Johannesburg, South Africa represented a desire to create a society that is based on common citizenship, and democracy. The architects of the Charter had a vision of a society that lived in peace with itself. Today, the Charter is still promoted as the best thing that ever happened to a society ravaged by racism, dispossession, oppression and exploitation – a society divided in all aspects of its life. This paper moves from the understanding that land is fundamental to all life. It interrogates the Charter’s claim on land. At a time when the colonised world sought to free themselves from the chains of colonialism and Africans throughout the continent demanded Africa for the Africans, the Freedom Charter claimed South Africa for all who lived in it. To the extent that this paper problematizes the philosophical underpinnings of the Charter, it uses the methodology of dialectic materialism to understand the theoretical basis of the Freedom Charter. The paper argues that the understanding, desire and the vision of the Freedom Charter were, as they are today, irreconcilable. To that effect and in pursuit of narrow class interests, the Charter justified land dispossession and unsustainable living conditions for the dispossessed majority. The paper then concludes that, by misrepresenting the critically fundamental land question, the Charter tried to reconcile the dispossessed with their dispossession and thus reflected coloniality and whiteness long before colonialism and settler-colonialism came to an end in South Africa.

Keywords: colonialism, contradictions, freedom charter, South Africa

Procedia PDF Downloads 429
427 Relationship Building Between Peer Support Worker and Person in Recovery in the Community-based One-to-One Peer Support Service of Mental Health Setting

Authors: Yuen Man Yan

Abstract:

Peer support has been a rising prevalent mental health service in the globe. The community-based mental health services employ persons with lived experience of mental illness to be peer support workers (PSWs) to provide peer support service to those who are in the progress of recovery (PIRs). It represents the transformation of mental health service system to a recovery-oriented and person-centered care. Literatures proved the feasibility and effectiveness of the peer support service. Researchers have attempted to explore the unique good qualities of peer support service that benefit the PIRs. Empirical researches found that the strength of the relationship between those who sought for change and the change agents positively related to the outcomes in one-to-one therapies across theoretical orientations. However, there is lack of literature on investigating the relationship building between the PSWs and PIRs in the one-to-one community-based peer support service. This study aims to identify and characterise the relationship in the community-based one-to-one peer support service from the perspectives of PSWs and PIRs; and to conceptualize the components of relationship building between PSWs and PIRs in the community-based one-to-one peer support service. The study adopted the constructivist grounded theory approach. 10 pairs of the PSWs and PIRs participated in the study. Data were collected through multiple qualitative methods, including observation of the interaction and exchange of the PSWs and PIRs in the 1ₛₜ, 3ᵣ𝒹 and 9th sessions of the community-based one-to-one peer support service; and semi-structural interview with the PSWs and PIRs separately after the 3ᵣ𝒹and 9ₜₕ session of the peer support service. This presentation is going to report the preliminary findings of the study. PSWs and PIRs identified their relationship as “life alliance”. Empathy was found to be one of key components of the relationship between the PSWs and the PIRs. Unlike the empathy, as explained by Carl Roger, in which the service provider was able to put themselves into the shoes of the service recipients as if he was the service recipients, the intensity of the empathy was much greater in the relationship between PSWs and PIRs because PSWs had the lived experience of mental illness and recovery. The dimensions of the empathy in the relationship between PSWs and PIRs was found to be multiple, not only related to the mental illness but also related to various aspects in life, like family relationship, employment, interest of life, self-esteem and etc.

Keywords: person with lived experience, peer support worker, peer support service, relationship building, therapeutic alliance, community-based mental health setting

Procedia PDF Downloads 72
426 Neo-Filipino: A Study on the Impact of Internet and Mobile Technology on the Identity Formation of Selected Filipino Third Culture Kids (TCKs)

Authors: Erika Mae L. Valencia

Abstract:

Third Culture Kids (TCKs) are children who experienced a cross-cultural upbringing – being raised and lived outside their parents’ culture. As a result, TCKs experience the difficulty of building and attaining a concrete cultural identity. However, in the context of globalization and the emergence of ICTs, the internet, and mobile technology creates better ways of constructing cultural identities. This study investigates the social and cultural impacts of the internet and mobile technology on the multi-cultural identity development among selected Filipino TCKs. Moreover, this research seeks to understand how the Filipino TCKs form their identity and address their complex issue of belonging with the use of different internet platforms and mobile technology. To explore the lived experiences of Filipino TCKs, this research employs a transcendental phenomenological design. Also, this study uses purposive and snowball sampling and conduct in-depth interviews through Skype, phone call, or face-to-face. This study utilizes Pierre Bourdieu’s social capital as a theoretical lens to gain understanding of the TCKs’ identity formation process in relation to the said ICTs. This research argues that the internet and mobile technology play a significant role in facilitating multi-cultural identity formation of Filipino TCKs, as well as potentially broadening their social network through its various technological platforms.

Keywords: identity, internet, third culture kids, mobile technology

Procedia PDF Downloads 294
425 Empowering Through Photovoice and Entrepreneurship: A Lived Experience of Alcohol-Induced Disorder and Recovery in Zambia

Authors: Rabson Banda

Abstract:

This abstract delves into the transformative journey of Rabson Banda, a visionary leader in Zambia who has harnessed the power of photovoice, mental fitness, and entrepreneurship to combat substance use disorders in the face of limited job opportunities in Africa. Rabson's personal battle with alcohol-induced disorder serves as the foundation for his pioneering work in establishing Elevated Initiatives, a grassroots organization dedicated to empowering individuals struggling with addiction through innovative approaches. Through the lens of photovoice, Rabson Banda amplifies the voices of those affected by substance abuse, providing a platform for self-expression and healing. By intertwining mental fitness techniques and entrepreneurial skills, he equips individuals with the tools needed to break free from the cycle of addiction and chart a new path toward holistic wellness and economic independence. Rabson Banda's story embodies resilience, hope, and the unwavering belief in the transformative power of community-driven initiatives. His work not only addresses the immediate challenges of substance use disorders but also addresses the root causes of addiction by advocating for increased job opportunities and economic empowerment in Zambia and across Africa for decent job creation and Entrepreneurship: A Lived Experience of Alcohol-Induced Disorder and Recovery in Zambia.

Keywords: mental fitness, entrepreneurship, photovoice, descent jobs

Procedia PDF Downloads 38
424 Embracing Our Scars: Self-Harm 101

Authors: Bree Wiles

Abstract:

Self-harm is still a topic that is not talked about enough, especially with the growing concern for the safety of LGBTQIA+ youth. LGBTQIA+ youth are coming out at earlier ages, thus bringing to attention the added risks for this population. Many LGBTQIA+ youth end up engaging in some form of self-destructive behavior from dealing with the stigma and negative socialization around them. Within the LGBTQIA+ youth population, self-harm alongside depression and suicide is especially common. This disparity shows the importance of providing LGBTQIA+ youth with resources that affirm their identities. As professionals and parents, it is important to understand the types of self-harm, the average age range when it can occur, causes, populations, risk factors, and self-harm in connection with mental health and suicide. It is imperative to provide protective factors for LGBTQIA+ youth in helping to replace self-harming behaviors with positive coping strategies. Helping LGBTQIA+ youth in different contexts, including from a professional, parent, and educator perspective, allows unique ways in which each can assist an LGBTQIA+ youth who is self-harming. The stigma, shame, and many misconceptions about self-harming behaviors are discussed in depth including from the lived experience of this author and professional experiences working with queer youth. Most importantly, it is imperative to know how to approach LGBTQIA+ youth who are self-harming, including how to speak in a compassionate and empathy-based framework. Clear interventions and therapeutic techniques based on evidence-based practices on alternatives to self-harm, lived experience, and previous practices with queer youth who are self-harming are provided and discussed.

Keywords: LGBTQ+, mental health, self-harm, depression

Procedia PDF Downloads 50
423 Presentation of Transgender identities

Authors: Tony Chapman-Wilson

Abstract:

Applied theatre is not an ultimate vehicle to create social change; but is more an opportunity of hope that the production material might affect this. Theatre-makers are able to deconstruct socially and politically challenging themes to encourage their audience to witness lived experiences as they consider themes of concern and injustice. This allows writers to (re) present the lived experiences of trans people, and for social injustice, continued transphobia, and lack of equity to be presented to an audience for debate. There needs to be a stronger position and presence of trans voices and active participation presented of these rather than just that of the cisgender-lens and standpoint. This research examines the relationship between human rights and theatre and considers global examples of this practice, as well as exploring the negatives formed from this relationship, and how this may be developed in the future. This focusses on the ability of theatre to denounce the violations of human rights and considers the power of theatre to support the importance of the awareness of violations to human rights for the raised awareness and potential for action of the audience – who may themselves be part of the oppressed, or indeed an oppressor. The fundamental assertion here is not one of evidenced social change, but of awareness raising of the audience and the potential for social activism and action. The practice of applied theatre is one that is experienced by the audience and the project participants alike, with the intention that theatre may consider how people interact with one another. This paper examines the opportunity of verbatim theatre techniques to allow for a cis-led trans-collaborative research project to (re) present intergenerational trans identities.

Keywords: applied theatre, verbatim, transgender, social justice

Procedia PDF Downloads 42
422 From Transference Love to Self Alienation in the Therapeutic Relationship: A Case Study

Authors: Efi Koutantou

Abstract:

The foundation of successful therapy is the bond between the psychotherapist and the patient, Psychoanalysis would argue. The present study explores lived experiences of a psychotherapeutic relationship in different moments, initial and final with special reference to the transference love developed through the process. The fight between moments of ‘leaving a self’ behind and following ‘lines of flight’ in the process of creating a new subjectivity and ‘becoming-other’ will be explored. Moments between de-territorialisation – surpassing given constraints such as gender, family and religion, kinship bonds - freeing the space in favor of re-territorialisation – creation of oneself creation of oneself will also be analyzed. The generation of new possibilities of being, new ways of self-actualization for this patient will be discussed. The second part of this study will explore the extent to which this ‘transference love’ results for this specific patient to become ‘the discourse of the other’; it is a desideratum whether the patient finally becomes a subject of his/her own through his/her own self-exploration of new possibilities of existence or becomes alienated within the thought of the therapist. The way in which the patient uses or is (ab)used by the transference love in order to experience and undergo alienation from an ‘authority’ which may or may not sacrifice his/her own thought in favor of satisfying the therapist will be investigated. Finally, from an observer’s perspective and from the analysis of the results of this therapeutic relationship, the counter-transference will also be analyzed, in terms of an attempt of the analyst to relive and satisfy his/her own desires through the life of the analysand. The accession and fall of an idealized self will be analyzed, the turn of the transference love into ‘hate’ will conclude this case study through a lived experience in the therapeutic procedure; a relationship which can be called to be a mixture of a real relationship and remnants from a past object relationship.

Keywords: alienation, authority, counter-transference, hate, transference love

Procedia PDF Downloads 210
421 Factors of the Community Leaders' and Citizens' Way of Life Based on the Sufficient Economy in Vientiane, Lao People's Democratic Republic

Authors: Phusit Phukamchanoad

Abstract:

This research aims to analyze the fundamental factors of the community leader and citizens behind the self-sufficient living in Vientiane, Lao People's Democratic Republic. The data were collected by asking 400 citizens to fill out the questionnaires and having in-depth interviews with 30 community leaders. It was found that the factors which had influenced the practice of the sufficiency economy philosophy were age, occupation, length of time living in Vientiane, education, monthly income, monthly expense, and the sufficiency economy philosophy training. The people who had been trained could practice the sufficiency economy philosophy better at both individual and household level than the people who had not been trained. The people who were older than 36 years old had practiced the sufficiency economy philosophy more than the people who were younger than 35 years old. The people who worked in state-owned enterprises, private businesses, and government officials: teachers, police officers, soldiers, and ministers applied the sufficiency economy philosophy more than the samples who were students. The people who lived in Vientiane for more than 31 years applied the sufficiency economy philosophy more than the samples who lived in Vientiane for not more than 30 years. The people whose incomes exceeded 20,001 baht applied the sufficiency economy philosophy more than the people whose incomes did not exceed 20,000 baht. Both community leaders and citizens had a good relationship with their families and community. The community members supported each other during tough times. There were regular meetings in the community. There was unity within the families. The time to build a bond in the family was the time when everyone was eating together. Also, most community leaders and citizens had at least two jobs per one person.

Keywords: sufficiency economy philosophy, fundamental factors, way of life, Vientiane Lao PDR

Procedia PDF Downloads 141
420 Clothing Features of Greek Orthodox Woman Immigrants in Konya (Iconium)

Authors: Kenan Saatcioglu, Fatma Koc

Abstract:

When the immigration is considered, it has been found that communities were continuously influenced by the immigrations from the date of the emergence of mankind until the day. The political, social and economic reasons seen at the various periods caused the communities go to new places from where they have lived before. Immigrations have occurred as a result of unequal opportunities among communities, social exclusion and imposition, compulsory homeland emerging politically, exile and war. Immigration is a social tool that is defined as a geographical relocation of people from a housing unit (city, village etc.) to another to spend all or part of their future lives. Immigrations have an effect on the history of humanity directly or indirectly, revealing new dimensions for communities to evaluate the concept of homeland. With these immigrations, communities carried their cultural values to their new settlements leading to a new interaction process. With this interaction process both migrant and native community cultures were reshaped and richer cultural values emerged. The clothes of these communities are amongst the most important visual evidence of this rich cultural interaction. As a result of these immigrations, communities affected each other culture’s clothing mutually and they started adding features of other cultures to the garments of its own, resulting new clothing cultures in time. The cultural and historical differences between these communities are seem to be the most influential factors of keeping the clothing cultures of the people alive. The most important and tragic of these immigrations took place after the Turkish War of Independence that was fought against Greece in 1922. The concept of forced immigration was a result of Lausanne Peace Treaty, which was signed between Turkish and Greek governments on 30th January 1923. As a result Greek Orthodoxes, who lived in Turkey (Anatolia and Thrace) and Muslim Turks, who lived in Greece were forced to immigrate. In this study, clothing features of Greek Orthodox woman immigrants who emigrated from Turkey to Greece in the period of the ‘1923 Greek-Turkish Population Exchange’ are aimed to be examined. In the study using the descriptive research method, before the ‘1923 Greek-Turkish Population Exchange’, the clothings belong to Greek Orthodox woman immigrants who lived in ‘Konya (Iconium)’ region in the Ottoman Empire, are discussed. In the study that is based on two different clothings belonging to ‘Konya (Iconium)’ region in the clothing collection archive at the ‘National Historical Museum’ in Greece, clothings of the Greek Orthodox woman immigrants are discussed with cultural norms, beliefs, values as well as in terms of form, ornamentation and dressing styles. Technical drawings are provided demonstrating formal features of the clothing parts that formed clothing integrity and their properties are described with the use of related literature in this study. This study is of importance that that it contains Greek Orthodox refugees’ clothings that are found in the clothing collection archive at the ‘National Historical Museum’ in Greece reflecting the cultural identities, providing information and documentation on the clothing features of the ‘1923 Greek-Turkish Population Exchange’.

Keywords: clothing, Greece, Greek Orthodoxes, immigration, national historical museum, Turkey

Procedia PDF Downloads 247
419 Leveraging Play to Foster Healthy Social-emotional Development in Young Children in Poverty

Authors: Smita Mathur

Abstract:

Play is an innate, player-centric, joyful, fundamental activity of early childhood development that significantly contributes to social, emotional, and academic learning. Leveraging the power of play can enhance these domains by creating engaging, interactive, and developmentally appropriate learning experiences for young children. This research aimed to systematically examine young children’s play behaviors with a focus on four primary objectives: (1) the frequency and duration of on-task behaviors, (2) social interactions and emotional expressions during play, (3) the correlation between academic skills and play, and (4) identifying best practices for integrating play-based curricula. To achieve these objectives, a mixed-method study was conducted among young preschool-aged children in low socio-economic populations in the United States. The children were identified using purposive sampling. The children were observed during structured play in classrooms and unstructured play during outdoor playtime and in their home environments. The study sampled 97 preschool-aged children. A total of 3970 minutes of observations were coded to address the research questions. Thirty-seven percent of children lived in linguistically isolated families, and 76% lived in basic budget poverty. Children lived in overcrowded housing situations (67%), and most families had mixed citizenship status (66%). The observational study was conducted using the observation protocol during the Oxford Study Project. On-task behaviors were measured by tracking the frequency and duration of activities where children maintained focus and engagement. In examining social interactions and emotional expressions, the study recorded social interactions, emotional responses, and teacher involvement during play. The study aimed to identify best practices for integrating play-based curricula into early childhood education. By analyzing the effectiveness of different play-based strategies and their impact on on-task behaviors, social-emotional development, and academic skills, the research sought to provide actionable recommendations for educators and caregivers. The findings from study 1. Highlight play behaviors that increase on-task behaviors and academic, & social skills in young children. 2. Offers insights into teacher preparation and designing play-based curriculum 3. Research critiques observation as a data collection technique.

Keywords: play, early childhood education, social-emotional development, academic development

Procedia PDF Downloads 26
418 Born in Limbo, Living in Limbo and Probably Will Die in Limbo

Authors: Betty Chiyangwa

Abstract:

The subject of second-generation migrant youth is under-researched in the context of South Africa. Thus, their opinions and views have been marginalised in social science research. This paper addresses this gap by exploring the complexities of second-generation Mozambican migrant youth’s lived experiences in how they construct their identities and develop a sense of belonging in post-apartheid South Africa, specifically in Bushbuckridge. Bushbuckridge was among the earliest districts to accommodate Mozambican refugees to South Africa in the 1970s and remains associated with large numbers of Mozambicans. Drawing on Crenshaw’s (1989) intersectionality approach, the study contributes to knowledge on South-to-South migration by demonstrating how this approach is operationalised to understand the complex lived experiences of a disadvantaged group in life and possibly in death. In conceptualising the notion of identity among second-generation migrant youth, this paper explores the history and present of first and second-generation Mozambican migrants in South Africa to reveal how being born to migrant parents and raised in a hosting country poses life-long complications in one’s identity and sense of belonging. In the quest to form their identities and construct a sense of belonging, migrant youth employ precariously means to navigate the terrane. This is a case study informed by semi-structured interviews and narrative data gathered from 22 second-generation Mozambican migrant youth between 18 and 34 years who were born to at least one Mozambican parent living in Bushbuckridge and raised in South Africa. Views of two key informants from the South African Department of Home Affairs and the local tribal authority provided additional perspectives on second-generation migrant youth’s lived experiences in Bushbuckridge, which were explored thematically and narratively through Braun and Clarke’s (2012) six-step framework for analysing qualitative data. In exploring the interdependency and interconnectedness of social categories and social systems in Bushbuckridge, the findings revealed that participants’ experiences of identity formation and development of a sense of belonging were marginalised in complex, intersectional and precarious ways where they constantly (re)negotiated their daily experiences, which were largely shaped by their paradoxical migrant status in a host country. This study found that, in the quest for belonging, migrant youths were not a perfectly integrated category but evolved from almost daily lived experiences of creating a living that gave them an identity and a sense of belonging in South Africa. The majority of them shared feelings of living in limbo since childhood and fear of possibly dying in limbo with no clear (solid) sense of belonging to either South Africa or Mozambique. This study concludes that there is a strong association between feelings of identity, sense of belonging and levels of social integration. It recommends the development and adoption of a multilayer comprehensive model for understanding second-generation migrant youth identity and belonging in South Africa which encourages a collaborative effort among individual migrant youth, their family members, neighbours, society, and regional and national institutional structures for migrants to enhance and harness their capabilities and improve their wellbeing in South Africa.

Keywords: bushbuckridge, limbo, mozambican migrants, second-generation

Procedia PDF Downloads 69
417 Islamic Perspective on Autism Spectrum Disorder: Lived Experience of Muslim Families of Children with Autism Spectrum Disorder in a City in the UK

Authors: Hawa Khan

Abstract:

Autism is a complex disorder related to abnormalities in the development of brain structure and neurological function and a new phenomenon which is epidemically on the increase. The Muslim community, with its profound commitment to the all-encompassing Islamic precedence, views all phenomena in the light of religious imperatives. How autism is understood and treated in these communities is key to successful inclusive services. Moreover, parents mentioned their Islamic faith as a coping mechanism for the challenges they faced while caring for their child. This study utilises interpretative phenomenology analysis as a methodology that seeks to interpret the meaning the participants make of their experiences, which extends descriptive analysis. Semi-structured interviews were conducted with 5 family units that included fathers, mothers, grandparents, and siblings. In the preliminary stage, this study found families give high importance of accessible Islamic education for their child and questioning the accountability of the child who might not be able to follow the Islamic way of life entirely or understand the concept of Allah. Moreover, the families expressed their beliefs in traditional and religious treatment as an effective way to treat and cure autism. This poses a major barrier between families seeking support and professionals providing services. Consequentially, it can also result in a low uptake of mainstream services from the Muslim community. Exploring the lived experiences of parents from the Muslim community and how ASD is conceptualised in this community could have implications for improved and effective home, community, and service collaboration.

Keywords: autism spectrum disorder, Islamic education, religious beliefs, mainstream services

Procedia PDF Downloads 114
416 An Engaged Approach to Developing Tools for Measuring Caregiver Knowledge and Caregiver Engagement in Juvenile Type 1 Diabetes

Authors: V. Howard, R. Maguire, S. Corrigan

Abstract:

Background: Type 1 Diabetes (T1D) is a chronic autoimmune disease, typically diagnosed in childhood. T1D puts an enormous strain on families; controlling blood-glucose in children is difficult and the consequences of poor control for patient health are significant. Successful illness management and better health outcomes can be dependent on quality of caregiving. On diagnosis, parent-caregivers face a steep learning curve as T1D care requires a significant level of knowledge to inform complex decision making throughout the day. The majority of illness management is carried out in the home setting, independent of clinical health providers. Parent-caregivers vary in their level of knowledge and their level of engagement in applying this knowledge in the practice of illness management. Enabling researchers to quantify these aspects of the caregiver experience is key to identifying targets for psychosocial support interventions, which are desirable for reducing stress and anxiety in this highly burdened cohort, and supporting better health outcomes in children. Currently, there are limited tools available that are designed to capture this information. Where tools do exist, they are not comprehensive and do not adequately capture the lived experience. Objectives: Development of quantitative tools, informed by lived experience, to enable researchers gather data on parent-caregiver knowledge and engagement, which accurately represents the experience/cohort and enables exploration of questions that are of real-world value to the cohort themselves. Methods: This research employed an engaged approach to address the problem of quantifying two key aspects of caregiver diabetes management: Knowledge and engagement. The research process was multi-staged and iterative. Stage 1: Working from a constructivist standpoint, literature was reviewed to identify relevant questionnaires, scales and single-item measures of T1D caregiver knowledge and engagement, and harvest candidate questionnaire items. Stage 2: Aggregated findings from the review were circulated among a PPI (patient and public involvement) expert panel of caregivers (n=6), for discussion and feedback. Stage 3: In collaboration with the expert panel, data were interpreted through the lens of lived experience to create a long-list of candidate items for novel questionnaires. Items were categorized as either ‘knowledge’ or ‘engagement’. Stage 4: A Delphi-method process (iterative surveys) was used to prioritize question items and generate novel questions that further captured the lived experience. Stage 5: Both questionnaires were piloted to refine wording of text to increase accessibility and limit socially desirable responding. Stage 6: Tools were piloted using an online survey that was deployed using an online peer-support group for caregivers for Juveniles with T1D. Ongoing Research: 123 parent-caregivers completed the survey. Data analysis is ongoing to establish face and content validity qualitatively and through exploratory factor analysis. Reliability will be established using an alternative-form method and Cronbach’s alpha will assess internal consistency. Work will be completed by early 2024. Conclusion: These tools will enable researchers to gain deeper insights into caregiving practices among parents of juveniles with T1D. Development was driven by lived experience, illustrating the value of engaged research at all levels of the research process.

Keywords: caregiving, engaged research, juvenile type 1 diabetes, quantified engagement and knowledge

Procedia PDF Downloads 55