Personal Life Experiences Research Articles

Spiritual care provision to end-of-life patients: A systematic literature review.

To develop an understanding of how nurses provide spiritual care to terminally ill patients in order to develop best practice. Patients approaching the end of life (EoL) can experience suffering physically, emotionally, socially and spiritually. Nurses are responsible for assessing these needs and providing holistic care, yet are given little implementable, evidence-based guidance regarding spiritual care. Nurses internationally continue to express inadequacy in assessing and addressing the spiritual domain, resulting in spiritual care being neglected or relegated to the pastoral team. Systematic literature review, following PRISMA guidelines. Nineteen electronic databases were systematically searched and papers screened. Quality was appraised using the Critical Appraisal Skills Programme qualitative checklist, and deductive thematic analysis, with a priori themes, was conducted. Results Eleven studies provided a tripartite understanding of spiritual caregiving within the a priori themes: Nursing Spirit (a spiritual holistic ethos); the Soul of Care (the nurse-patient relationship); and the Body of Care (nurse care delivery). Ten of the studies involved palliative care nurses. Nurses who provide spiritual care operate from an integrated holistic worldview, which develops from personal spirituality, life experience and professional practice of working with the dying. This worldview, when combined with advanced communication skills, shapes a relational way of spiritual caregiving that extends warmth, love and acceptance, thus enabling a patient's spiritual needs to surface and be resolved. Quality spiritual caregiving requires time for nurses to develop: the personal, spiritual and professional skills that enable spiritual needs to be identified and redressed; nurse-patient relationships that allow patients to disclose and co-process these needs. Supportive work environments underpin such care. Further research is required to define spiritual care across all settings, outside of hospice, and to develop guidance for those involved in EoL care delivery.

“My Dream Is My Son”

This article is an exploration of Salomé’s construction of the U.S. American Dream. Salomé is a sixty-seven-year-old immigrant from Guatemala. During eight hours of in-depth interview, Salomé talks about the embodied experience of migration, motherhood, and her view of the American Dream. In this article, I explore issues of representation, voice, and positionality when conducting qualitative research. Salomé’s story is not generalizable to all Latinx immigrants but is nonetheless illustrative of the ways in which the American Dream is contextualized by individuals. At a time when Latinx migration and experience in the United States and the nature and content of the American Dream have taken center stage in national dialogue, Salomé’s experiences serve to illustrate the profoundly personal and individual lived experiences of the American Dream.

Knowledge in Transition in Healthcare.

Organizations are challenged by the need to transform Dynamic Knowledge, embedded in each worker, into Static Knowledge, rooted in factual documental information. However, innovation and knowledge creation seem to be facilitated by the personal knowledge and life experiences of people, which appear to be dynamic. The tensions between Dynamic and Static Knowledge in facilitating the transfer and sharing of knowledge arise as compelling research as well as practical topic for organizations. Our paper aims to investigate such tensions by employing a case study. We decided to deepen such dynamics in the healthcare field, given its importance for business and society. In more detail, we analyzed one Emergency Room (ER) department through a series of interviews. Our findings highlight the importance of the right balance between Static and Dynamic Knowledge. On the one hand, the healthcare organization recognized the need to incorporate knowledge into practical and tangible instruments. On the other hand, the flows of Dynamic Knowledge must be fostered through a culture of knowledge translation and sharing, and the development of soft skills.

Transnational Social Workers’ Understanding of Australian First Nations Perspectives in Statutory Child Protection

ABSTRACT Chronic staff shortages and high rates of turnover in child protection programs create opportunities for social work mobility across the world. Australian child protection departments actively recruit social workers from the United Kingdom and Ireland. This strategy may cause tension relating to the application of known Western social work practice and theory and limited understanding of Australian First Nations worldviews. Australia continues to struggle with the ongoing impact of colonisation; First Nations children are overrepresented in child protection service delivery. The research explored the understanding held by overseas-born and -educated social workers from the UK and Ireland (transnational social workers or TNSWs) of Australian First Nations peoples, when they migrate to practice in frontline child protection. Interviews with 13 practitioners across two time points explored social work practice in the transnational context. The study found that the majority of TNSWs had limited understanding of social work in a colonised country. The results provide a foundation to rethink how TNSW practice is influenced by place-related change. This research identified a need to raise transnational social workers’ awareness of Australian First Nations child rearing practices that may lie outside their experiential understanding. IMPLICATIONS Transnational social workers may advance their understanding of First Nations peoples and their perspectives through increasing their awareness of differences in their personal lived experiences from that of Australian First Nations peoples. The practice of cultural humility may reduce harm in transnational child protection practice. Critical reflection may enable the emergence of counter-colonial thinking in child protection practice with Australian First Nations peoples.

Building Community Self-Esteem: Advocating for Culture

This published version of the 2019 David Buchan Lecture draws on personal lived experiences and public folklore work to explore the folklorist’s role in creating the conditions for cultures to thrive. Understanding those conditions to include community self-esteem nurtured by a sense of belonging, I ask what is our responsibility when we witness disruptions and inequities? Can we create change when we amplify the voices of a community? Reflecting on my work with refugee and immigrant women over four decades, this article offers a glimpse into the collaborative work of a folklorist who found her bearings in the opportunity, even the responsibility, to advocate for cultural equity in her community.

Experiences on Providing Home Care for A Relative with Heart Failure: A Qualitative Study

ABSTRACT Purpose The aim of this study was to explore and describe the lived experiences of persons providing home care for community-dwelling relative with heart failure (HF) in Jordan. Design: It was a phenomenological study. Methods: Data were collected through interviews with 29 participants and analyzed using a thematic analysis approach. Findings: Four core themes have emerged: caregiving as a mandatory responsibility, positive experiences, negative experiences, and factors influencing the quality of the experiences. Conclusion: Although the hallmark of the participants’ experience was negative, they showed a strong commitment to caring for their ill relatives. Clinical Evidence: The findings underscore the need for frequent assessment and support of family caregivers.

Making occupations possible? Critical narrative analysis of social assistance in Ontario, Canada

ABSTRACT Social assistance is a program created to alleviate extreme poverty by providing payments to people with little or no income. It has been heavily criticized due to the conflicting nature of its two main objectives, alleviating poverty and promoting self-sufficiency. The purposes of this research were to present a richly textured account of the lived experience of persons receiving social assistance in Ontario, Canada and to explore how their occupational possibilities are influenced by broader social contexts and policy. We used critical narrative analysis, which combines hermeneutic phenomenology with critical theory, to interrogate the data from a governmentality perspective. We uncovered common aspects of participant experiences related to the social system, the community, and individual factors and demonstrated tensions created by neoliberalism: the Neoliberal Paradox, the Welfare-to-Work Paradox, and the Caseworker Paradox. Social assistance recipients lack the opportunity and resources to make everyday choices and to have decision-making power as they participate in occupations. Through a better understanding of the social and political processes that create social assistance, while considering the lived experience of its recipients, occupational scientists will be better able to identify and rectify occupational injustices for people living in poverty.

Living with Chronic Fatigue Syndrome during lockdown and a global pandemic

ABSTRACT Objective : Chronic Fatigue Syndrome, a condition characterised by extreme fatigue that is not explained by other medical conditions, places individuals at greater risk of COVID-19. The condition is also associated with a lack of social support and social isolation. These individuals may, therefore, have a unique experience of lockdown and the pandemic. The present study investigates the experiences of those with Chronic Fatigue Syndrome during the COVID-19 pandemic. Design : In the present study, we identified fifty online forum (Reddit) posts, discussing the personal lived experience of Chronic Fatigue Syndrome during lockdown and the global pandemic. These posts were subject to inductive thematic analysis. Results : Four themes were extracted from the data. These were (i) Symptom Change, (ii) Social Interactions, (iii) Comparing Experiences, and (iv) Positive Consequences. Themes highlighted both positive and negative experiences of the COVID-19 pandemic. For example, whilst some people reported more severe symptoms, lockdown also provided more accessible opportunities to interact (i.e. online videocalls). Conclusion : Chronic Fatigue Syndrome influenced physical, psychological, and social experiences, with both positive and negative outcomes of the lockdown and pandemic apparent. Findings have the potential to support those with Chronic Fatigue Syndrome and those who experience post-COVID-19 fatigue.

“I Went Back to my Old School”

By examining a case study of skilled African migrants in South Africa, this paper focuses on a neglected geographical area within the international scholarship on migration. Contextualized in the wider scholarship on the personal life experiences of migrants, the current research focuses on the role of personal and social memory as a neglected dimension of the migration experience. Various studies explore memory in relation to migrants’ attempts at preserving cultural identity and fostering home atmosphere in the host country, but this paper draws attention to memory in the homeland context, i.e. the activation of memories through specific performativity during temporary return visits. Many migrants on home visits not only spend time with family, but also return to significant places, most notably—as was found in this research—to their former school, a place associated with memories of childhood and the pre-migration past. The research is based on interviews with 40 participants from different countries across Africa. Drawing on theoretical concepts from the field of Memory Studies, notably the link between memory and place, the research analyses why migrants return to their old school, how the visit precipitates memories and affects their sense of identity. The study found that the multisensory engagement with the material and social environment of the school, a microcosm of their “homeworld,” associated with deep-seated embodied memories is experienced in affirmative and empowering ways, suggesting that it feeds psychological needs and contributes to a sense of identity continuity in the face of migration-related change and challenges.

ФОРМУВАННЯ ДУХОВНО-МОРАЛЬНИХ ЦІННОСТЕЙ У ДОШКІЛЬНИКІВ

Стаття присвячена проблемі формування духовно-моральних цінностей дошкільників. Проаналізовано погляди вітчизняних та зарубіжних вчених щодо змістового наповнення понять «духовність», «цінності». З’ясовано, що духовно-моральні цінності пов’язані із сформованими гуманістичними якостями, зокрема, любов’ю, повагою, гідністю, турботою про інших, співпереживанням, взаємодопомогою, добром, дружбою, взаємопідтримкою, толерантністю, непримиренністю до проявів зла тощо. Цінності є продуктом духовної культури, вони формуються і створюються в ході розвитку людської цивілізації, тому вони є загальноприйнятими і зберігаються в загальній культурній традиції. Вони виступають у якості орієнтира діяльності та існують у свідомості людини. Показником сформованих цінностей служать дії і вчинки, а не існуюча дійсність, і виявити їх можливо лише в дії.
 Розглянуто освітньо-виховний процес закладу дошкільної освіти з позиції упровадження педагогіки підтримки зростаючої особистості, в основі якої - ціннісне ставлення до навколишньої дійсності та самого себе, що в свою чергу спонукає до нового осмислення ролі педагога в освітньому процесі на основі суб’єкт-суб’єктної взаємодії, що передбачає діалог, спільну участь в організації освітньо-виховного процесу, орієнтацію на кожну дитину як ціннісно зорієнтованої, життєво компетентної особистості.
 Виокремлено мету, завдання, форми роботи з дошкільниками з формування в них духовно-моральних цінностей, що розкриваються у контексті реалізації напрямів виховання «Я і сім’я», «Я і природа», «Я і країна». Запропоновані форми і методи виховання відповідають віковим та індивідуальним особливостями дошкільнят, мотивовані на їх гуманізацію, ураховують особистий життєвий досвід дитини дошкільного віку, підвищують їх бажання до активної співпраці і спрямовані на засвоєння духовних цінностей, норм і правил моральної поведінки у взаємодії з собою та іншими.

Interweaving Conceptual and Substantial Problems of Writing Instruction: Socio Reflective on Exploring Hortatory and Analytical Exposition

This paper explores interweaving conceptual and substantial problems of teaching writing skills for analytical and hortatory exposition texts. Under the narrative inquiry, five English teachers’ personal life experiences were analyzed. Having been analyzed, the findings reveal: (1) students were still weak in understanding the concept of the two texts (social function, generic structure, and lexicogrammatical features of the text). (2) Students’ confusion to distinguish the two genres is supported by the condition that they do not learn the genres in their primary language. (3) The students are not accustomed to expressing their arguments whereas in analytical and hortatory texts the main points are presenting sequences of arguments in the body of the text. (4) Students have low motivation to read therefore it is hard for them to propose the suggestion and make reiteration in the end of hortatory and analytical exposition texts, and (5) lexicogrammatical features or the grammar that are commonly used in those texts are complex for the students in that level.

Living with Dysphagia in the Community: Caregivers "do whatever it takes."

The psychological and psychosocial impacts of dysphagia on patients are well documented, however, caregiver perspectives have received limited attention and findings have been predominantly in the head and neck cancer population. The aim of this study was to understand the experience of supporting a person with dysphagia of varying aetiologies in the community from the caregiver perspective. Using a qualitative descriptive approach grounded in phenomenology, caregivers of a person with dysphagia living at home were interviewed (n = 15). Thematic analysis revealed an overarching theme of "You do whatever it takes," describing the caregiver experience of supporting a family member/friend with dysphagia at home. This theme was underpinned by three subthemes where caregivers described (1) being a caregiver; (2) support networks; and (3) practicalities of living with dysphagia. Caregivers voiced a range of pertinent issues experienced when caring for a family member/friend with dysphagia including how personal attributes and life experience impact the caregiver role. Demonstrated through the practical and emotional supports caregivers provided, it was apparent they are instrumental in supporting a family member/friend with dysphagia to live at home and in the community successfully. Through understanding the caregiver experience, health professionals will be in a better position to involve and support caregivers who play a vital role in those living with dysphagia in the community. Incorporating caregivers as direct recipients of dysphagia services will ensure the practical and psychosocial needs of caregivers are addressed, enabling optimal care for people with dysphagia living at home.

Latina immigrant mothers as educators: a testimonio of becoming

This article presents the experiences of Latina immigrant women who have raised or are raising children in the United States. As part of a minoritized group, Latina immigrant women have personal lived experiences that inform and affect the ways they interact with the world on a daily basis and that have shaped their personal and cultural identities in multiple ways. Those personal experiences are introduced in a testimonio, a personal narrative that portrays a collective story. Due to their experiences in becoming immigrants, these women have also developed particular ways of knowing, being, and doing that inform and guide their ways of mothering. The main implications of this testimonio call for educators’ attention -at all levels- to find alternate ways of validating social and cultural ways of being and doing that unfolds outside educational institutions, especially from minoritized groups, which cultural practices may differ from those of the dominant culture.

Experiences of Acute Myocardial Infarction Survivors: A Qualitative Research

Background: Cardiovascular diseases are among one the leading causes of death worldwide. The advancements in technology have improved survival rates in acute myocardial infarction patients. Survivors of acute myocardial infarction patients have to face many challenges to adapt to new situations. In-depth understanding of their lived experiences is pivotal for designing tailored made educational programme for their prevention and rehabilitation. There are limited researches available and inadequate attention has been paid to this issue. Therefore, this paper will evaluate personal lived experiences and perspectives of acute myocardial infarction survivors. Methods: Qualitative Literature Review from DELNET, MEDLINE, CINHAL and EBESCO electronic databases. Eighteen articles, 2002-2018, met the inclusion criteria. To identify themes constant comparative method was used. e identified: knowledge of causes (risk factors) of the disease, responses leaded by the event, adopting lifestyle changes, family and social support, future concerns and insecurities and expression of needs. Many survivors did not have adequate knowledge pertaining to causes and risk factors, warning signs and symptoms of acute myocardial infarction. Participants found changing one’s lifestyle is difficult and require constant support from family and health care providers. Conclusion: Community awareness campaigns are required to be increased by health care providers. Patients should be educated about the risk factors, signs, symptoms and appropriate changes in lifestyle during their routine checkup visits. Acute myocardial survivors need time-sensitive education especially during and after their hospitalization. Patients need constant support from family and health care providers to combat challenges during their recovery process. Health care providers can utilize this information to develop teaching programmes and to assist in care of acute myocardial infarction survivors.

I think of college as setting a good foundation for my future

PurposeLittle attention is given to black male experiences and decision-making process around college-going. A qualitative study (interpretive phenomenological analysis [IPA]) was conducted using a strengths-based perspective to understand the experiences of three first-generation black men college students attending a predominately white institution. Superordinate themes include perceived benefits to attending college, barriers to college admission and attendance and influential programs and supports. Recommendations for school counselors helping black males are included.Design/methodology/approachThe authors used a narrative approach to illustrate the stories and experiences captured by the three young men who participated in the study. Hays and Singh (2012) suggested using a narrative approach for telling the stories of marginalized groups. IPA (Smith, 1996) was the approach used to identify superordinate themes, because the authors wanted to better understand the participants’ K-16 experiences. As a qualitative approach, IPA provides detailed examinations of personal lived experiences on its own terms rather than pre-existing theoretical preconceptions.FindingsThe participants’ accounts clustered around three superordinate themes: perceived benefits to college, barriers to college admission and attendance and influential programs and supports.Originality/valueAlthough there are studies that provide insight on the factors that impact first-generation, black men’s success in attending college, there are few studies that have used a strengths-based perspective to investigate key experiences that lead to college enrollment. Those experiences that lead first-generation black male to attend college are pivotal and provide insight into important points of intervention and support. School counselors and other educators can use these insights to inform practices and the creation of supports for black men in their respective schools.

“We Stand up for Each Other!” An Interpretative Phenomenological Analysis of Collective Action among U.S. College Women

In 2018, more women than ever have run for and been elected to public office in the United States. Moreover, there has been an increase in women’s collective actions aimed at improving the welfare of women. In this social and political context, we examined the motivational mechanisms of collective action among college women in response to gender inequality and discrimination. Little work has addressed how collective action among college women emerges in the context of their lives. Based on data from 20 interviews with U.S. college women and using Interpretative Phenomenological Analysis (IPA), we developed a model that describes the process of mobilizing and maintaining engagement in collective action among college women and identifies the obstacles that they experience. Our findings extend prior research documenting the important roles of college women’s personal, social, and cultural life experiences in self-identification and collective action and describe additional obstacles and mechanisms of collective action. Researchers and activists alike could use the developed model to design strategies for mobilizing and sustaining activism among college women on behalf of all women.

The disability-rights perspective within the bioethics agenda.

The life perspectives of persons with disabilities have been neglected in many countries and particularly in lower- and middle-income countries that have fewer resources to adequately address the societal needs of these persons. Bioethics purports normative standards for the way in which we treat with others, and the virtue of care should be at the heart of everyday life. Human rights are norms that aspire to protect all persons everywhere. Within this milieu, persons with disabilities who make up a significant portion of all societies worldwide meet many social barriers that inhibit their quality of life and leave them greatly disadvantaged in comparison to able-bodied persons. This article focuses on the notion of quality of life, the presumed perspectives of biomedicine and bioethics on disability, the neglect of the lived experience of persons with disabilities, and the discrimination underlying the struggle for equal rights and opportunities for persons with disability. It argues for equal access to social and beneficial medical interventions for persons with disabilities; that persons with disabilities should be seen as different but equal; that their contributions to societal deliberations would enhance the richness of thought, views, narratives and perspectives; and that society should stop using the term disability and use instead the less value-laden term anomaly. Finally, it recommends educational campaigns to change negative attitudes towards persons with predicaments or anomalies, the respecting of human diversity, collaboration between upper-income and lower- and middle-income countries to develop strategies that seek to change negative attitudes towards persons with anomalies, and the inclusion worldwide of all these matters as a part of a bioethics agenda that advocates for respecting the human rights of persons with anomalies.

Health as Experience: Exploring Health in Daily Life Drawing From the Work of Aaron Antonovsky and John Dewey.

Research has pursued salutogenic and narrative approaches to deal with questions about how everyday settings are constitutive for different health practices. Healthy behavior is not a distinguishable action, but a chain of activities, often embedded in other social practices. In this article, we have endeavored to describe such a chain of activities guided by the salutogenic claim of exploring the good living argued by McCuaig and Quennerstedt. We use biographical material written by Karl Ove Knausgaard who has created a life story entitled My Struggle. The novel is selected upon an approach influenced by Brinkmann who stresses that literature can be seen as a qualitative social inquiry in which the novelist is an expert in transforming personal life experiences into common human expressions of life. The study illustrates how research with a broader notion of health can convey experiences of health, thereby complementing (and sometimes challenging) public health evidence.

Application of narrative medicine in oncological clinical practice: impact on health care professional.

Narrative medicine makes explicit the experience of disease and enhances the subjective view in the cure. In addition, the narrative approach involves personal experience and emotional resonances of the health care professional leading him to redefine the values in terms of health and disease. The IMPERO study aims to explore the personal "life experience" of health care professionals involved in studies exploring a new methodological clinical approach: the use of a digital narrative diary in collecting and integrating theme-oriented narration in clinical practice. Qualitative study based on the interviews of three health care professionals (two oncologists and one nurse) involved in the AMENO study. The main topic of the interviews was the "perceived" and the intimate experience of each health care professional, particularly on the meaning and the role regarding their personal and professional experience while coping with patients narration. The analysis of data focuses on three aspects: a) the health care professionals' point of view using the diary as a tool for narrative-based medicine; b) the work environment as a framework for the use of the digital diary; c) the mental construction concerning the meaning of the tool and its preliminary use in clinical practice. The diary is appreciate as a tool for the application of narrative-based medicine; the reading/writing format is considered of high quality and suitable for clinical practice processes. The narration drives a change in the patient-health care professional relationship: the patient is valued as an "individual". An atmosphere of empathy and greater intimacy is created. The perceptions developed over the years of clinical practice, which reflect personal and professional concepts (knowledge and individual believes in illness, health, healing, etc.), influence the perception of the narrative instrument and its clinical use. The work context influences the use of the diary, limiting its potential. Narrative medicine is a way of reorganizing the criteria that contribute in defining the quality of patient care by focusing on the patient-health care professional relationship. The approach of narrative medicine must be reviewed in the light of the relational systemic theory which allows us to understand several aspects: the training in narrative medicine itself, the acquisition of professional skills by practitioners, and the organizational development of the institutions (the organizational structures but also the values and professional culture of work).

Women’s Mental Health in India: An Analysis through the Gender Lens

As opposed to the traditional biomedical view of health, the social model of health defines it essentially, as a positive concept which significantly hinges on and is impacted by the social settings, personality of the individual , as well as physical capacities.’ It is in this context, mental health issues among women in general and Indian women in particular, as a subset of the larger corpus of health concerns needs to be inevitably understood and contextualised in the societal and cultural milieu within which women operate. One of such important societal constructs that seems to have a significant impact on mental and emotional health and experience of women is the the construct of gender and its corollaries like gender roles, expectations, demeanour, stereotypes etc. The social construct of gender engineers a woman’s position in the social hierarchy and also has a prominent bearing on her social and personal life experiences. Consequently, socio-cultural context and gender need to be understood as powerful decisive factors of one’s mental and emotional make-up that colludes with other variables like age, family, educational attainment, occupational structure, income and social support etc. The paper attempts to study the mental health concerns among women in India by especially, trying to locate its causes in the socio-cultural factors amid which the women live. Conclusively, the paper tries to highlight various suggestions for developing holistic solutions towards the improvement of mental health of women.