scholarly journals On the outside looking in: a phenomenological study of the lived experience of Australian adults with a disorder of the corpus callosum

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Maree Maxfield ◽  
Monica S. Cooper ◽  
Anne Kavanagh ◽  
Alexandra Devine ◽  
Liz Gill Atkinson
Keyword(s):  
Corpus Callosum ◽  
Lived Experience ◽  
Emerging Adults ◽  
Lived Experiences ◽  
Social Inclusion ◽  
Phenomenological Study ◽  
Imaging Techniques ◽  
Exploratory Research ◽  
Life Domains ◽  
Brain Disorder

Abstract Background While classified as a rare condition, a congenital disorder of the corpus callosum (DCC) is one of the most commonly identified brain anomalies in newborns, occurring in 1:4000 live births. Advances in imaging techniques have improved early diagnosis for children, yet adults with a DCC—who may present with extreme heterogeneity in cause and impact—often experience challenges in receiving a definitive diagnosis and accessing appropriate services and supports. To date, the dearth of evidence documenting the lived experiences of adults with DCC has made it difficult to determine adequate policy and service responses. This exploratory research aims to address this gap by presenting the first qualitative examination of the experiences and impact of complete or partial agenesis of the corpus callosum among adults. Results Eight face-to-face interviews were conducted with Australian adults, aged 23–72 years, to explore their lived experience. Data was collected in four Australian states from June to August 2017. Thematic and interpretive analyses were employed to analyse data. Three emergent themes described difficulties related to: (1) reactions to the diagnosis; (2) access to supports and key life domains, and (3) identifying as an adult. Interview analysis described lived experiences typically outlining a lifetime of exclusion and misunderstanding from family, educators and disability and health support services. Conclusions This paper contributes to filling the knowledge gap around a rare congenital brain disorder affecting the lives of adults. Findings confirm a considerable lack of information and support for adults living with corpus callosum disorders. Greater professional and societal understanding is needed to improve access to the key life domains of education, employment and social inclusion for adults with a DCC. To instigate truly effective change, social research must tackle the issues of applicability and impact to alter the dominance of uninformed practices, hindered by prevailing myths. This research paves the way for further phenomenological studies in which participant narrative is vital. Further research will elicit stronger policy and service responses for all current and emerging adults with a DCC.

scholarly journals On The Outside Looking In: A Phenomenological Study of The Lived Experience of Australian Adults With A Disorder of The Corpus Callosum

2021 ◽  
Author(s):  
Maree Maxfield ◽  
Monica S Cooper ◽  
Anne Kavanagh ◽  
Alexandra Devine ◽  
Liz Gill-Atkinson
Keyword(s):  
Corpus Callosum ◽  
Lived Experience ◽  
Emerging Adults ◽  
Lived Experiences ◽  
Social Inclusion ◽  
Phenomenological Study ◽  
Imaging Techniques ◽  
Exploratory Research ◽  
Life Domains ◽  
Brain Disorder

Abstract Background While classified as a rare condition, a congenital disorder of the corpus callosum (DCC) is one of the most commonly identified brain anomalies in newborns, occurring in 1 :4000 live births. Advances in imaging techniques have improved early diagnosis for children, yet adults with a DCC – who may present with extreme heterogeneity in cause and impact - often experience challenges in receiving a definitive diagnosis and accessing appropriate services and supports. To date, the dearth of evidence documenting the lived experiences of adults with DCC has made it difficult to determine adequate policy and service responses. This exploratory research aims to address this gap by presenting the first qualitative examination of the experiences and impact of complete or partial agenesis of the corpus callosum among adults. ResultsEight face-to-face interviews were conducted with Australian adults, aged 23 to 72 years, to explore their lived experience. Data was collected in four Australian states from June to August 2017. Thematic and interpretive analyses were employed to analyse data. Three emergent themes described difficulties related to; 1) Reactions to the diagnosis; 2) Access to supports and key life domains, and 3) Identifying as an adult. Interview analysis described lived experiences typically outlining a lifetime of exclusion and misunderstanding from family, educators and disability and health support services. ConclusionsThis paper contributes to filling the knowledge gap around a rare congenital brain disorder affecting the lives of adults. Findings confirm a considerable lack of information and support for adults living with corpus callosum disorders. Greater professional and societal understanding is needed to improve access to the key life domains of education, employment and social inclusion for adults with a DCC. To instigate truly effective change, social research must tackle the issues of applicability and impact to alter the dominance of uninformed practices, hindered by prevailing myths. This research paves the way for further phenomenological studies in which participant narrative is vital. Further research will elicit stronger policy and service responses for all current and emerging adults with a DCC.

scholarly journals Imprisonment: Young Pacific womens' experiences of living with depression

2021 ◽  
Author(s):  
◽  
Aotearoa Muaiava
Keyword(s):  
New Zealand ◽  
Lived Experience ◽  
Parent Education ◽  
Lived Experiences ◽  
Phenomenological Study ◽  
Future Research ◽  
Pacific Island ◽  
Music Reading ◽  
And Gender ◽  
Cultural Pressures

<p>Research has shown that depression is prevalent in adolescence. This descriptive phenomenological study explored the lived experiences of young Pacific Island (PI) women (17-25 years of age) living in New Zealand. Phenomenological interviewing was used to capture the lived experiences of depression with the aim of developing a deeper understanding of what it is like to be a young depressed PI woman. The essence of being depressed was imprisonment. Young PI women described how family and cultural pressures, experiences of failure and abuse led to their depression. They experienced rejection, being labelled, misunderstood and silenced by others and their circumstances and depression trapped them. The women managed their depression by finding their voice in writing journals, listening to music, reading bible scriptures, prayer and connecting to others with similar lived experience. The implications of the study are discussed in relation to improving parent education and culturally relevant support for young PI women. Recommendations for future research include developing approaches to research that include a more specific cultural and gender focus.</p>

scholarly journals Imprisonment: Young Pacific womens' experiences of living with depression

2021 ◽  
Author(s):  
◽  
Aotearoa Muaiava
Keyword(s):  
New Zealand ◽  
Lived Experience ◽  
Parent Education ◽  
Lived Experiences ◽  
Phenomenological Study ◽  
Future Research ◽  
Pacific Island ◽  
Music Reading ◽  
And Gender ◽  
Cultural Pressures

<p>Research has shown that depression is prevalent in adolescence. This descriptive phenomenological study explored the lived experiences of young Pacific Island (PI) women (17-25 years of age) living in New Zealand. Phenomenological interviewing was used to capture the lived experiences of depression with the aim of developing a deeper understanding of what it is like to be a young depressed PI woman. The essence of being depressed was imprisonment. Young PI women described how family and cultural pressures, experiences of failure and abuse led to their depression. They experienced rejection, being labelled, misunderstood and silenced by others and their circumstances and depression trapped them. The women managed their depression by finding their voice in writing journals, listening to music, reading bible scriptures, prayer and connecting to others with similar lived experience. The implications of the study are discussed in relation to improving parent education and culturally relevant support for young PI women. Recommendations for future research include developing approaches to research that include a more specific cultural and gender focus.</p>

scholarly journals The lived experience among Somali women of giving birth in Sweden: an interpretive phenomenological study

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Susanne Wallmo ◽  
Karin Allgurin ◽  
Carina Berterö
Keyword(s):  
Health Care ◽  
Lived Experience ◽  
Health Care Professionals ◽  
Lived Experiences ◽  
Interpretative Phenomenological Analysis ◽  
Phenomenological Study ◽  
Care Seeking ◽  
Snowball Sampling ◽  
Somali Women ◽  
Pregnancy And Birth

Abstract Background The health care-seeking behaviour among Somali women is different from Swedish women’s behaviour, and this may have consequences for birth giving. The aim of the study was to identify and describe Somali women’s lived experience of birth giving in Sweden. Methods Qualitative individual interviews were conducted in Swedish with seven Somali women. The sample was purposeful, and the snowball sampling method was used. The interviews were digitally recorded and transcribed verbatim. Data were analysed using interpretative phenomenological analysis. Results Four themes emerged during the analysis which revealed the Somali women’s lived experiences of giving birth in Sweden. a) Being recognised and confirmed as a woman. Somali women consider it important to be confirmed as a woman by the surrounding and professionals during pregnancy and birth giving. b) Communication is important for the women’s independence. There is a need to provide a structure for how this information is given and adaptation regarding content and format .c) Something naturally becomes unknown and complicated. Somali women come from a different culture, which affects their lived experiences of pregnancy and birth giving. There is a need for improved and clearer information for these Somali women regarding pregnancy and birth giving in another culture- the Swedish context d) Professional and competent taking care of. The women appreciate if they are treated with competency and professionalism; they do not want to be discriminated. The women feel confidence in health care when they meet competent and professional health care professionals. Conclusions The findings in the study indicate that reproductive health care for Somali women should be improved with regard to cultural differences and lived experiences, as this affects their experience of pregnancy and childbirth in Sweden. There is a need for both knowledge and understanding in order to provide good quality care for these Somali women, especially those who have been genitally mutilated.

scholarly journals The Lived Experiences of Pregnant Women During COVID-19 Pandemic: A Descriptive Phenomenological Study

2020 ◽  
Author(s):  
Forough Mortazavi ◽  
Fatemeh Ghardashi
Keyword(s):  
Pregnant Women ◽  
Lived Experience ◽  
Lived Experiences ◽  
Phenomenological Study ◽  
Phenomenological Approach ◽  
Descriptive Phenomenology ◽  
Virtual Training ◽  
Pregnancy And Childbirth ◽  
Supportive Community ◽  
Condition Of Women

Abstract BackgroundWith the onset of the COVID-19 epidemic, pregnancy and childbirth for women are taking place in unusual circumstances. We explored the lived experiences of pregnant women during the COVID-19 pandemic to better understand their experience of pregnancy so that better support could be provided.MethodsWe used a descriptive phenomenological approach to understand the lived experience of pregnant women in COVID-19 pandemic. We collected data using a purposive sampling method through in-depth interviews in cyberspace with a semi-structured questionnaire. We used Colaizzi’s seven-step content analysis method to analyze the research data with the help of MAXQDA software version 2020.ResultsWe conducted this descriptive phenomenology study on 19 pregnant women in a period between the 10th to the 20th of May, 2020. The participating women were already pregnant when the first signs of the epidemic appeared in the country and at the time of the interview. We acquired four themes including disruption of the tranquility and regular routines of daily life, new challenges caused by the epidemic, resilience and strength in facing the crisis, and adaptation with new conditions.ConclusionsThe psychological condition of women has deteriorated during the COVID-19 epidemic. The general mobilization the health system is necessary for alleviating pregnant women's difficulties in situations like the COVID-19 epidemic. Planning to establish virtual training classes, virtual counseling, and creating a safe and supportive community environment are among the most effective ways to enhance the peace and tranquility of pregnant women.

scholarly journals “Their Untold Stories…”: Lived Experiences of Being a Transgender (Hijra), A Qualitative Study From India

2020 ◽  
Vol 2 (2) ◽  
pp. 165-173
Author(s):  
Bithika Mondal ◽  
Sudeshna Das ◽  
Deepshikha Ray ◽  
Debanjan Banerjee
Keyword(s):  
Lived Experience ◽  
Lived Experiences ◽  
Interpretative Phenomenological Analysis ◽  
Social Inclusion ◽  
Well Being ◽  
Sex Characteristics ◽  
Social Community ◽  
Feminine Gender ◽  
Gender Perceptions ◽  
Societal Interactions

Background: Transgender is an umbrella term, used to encompass people who have a gender identity or gender expression, which differs from their sex assignment at birth. Being independent of sexual orientation, they have often been classified as the “third sex.” Based on various sociocultural traditions and beliefs, they are frequently “othered,” discriminated, and stigmatized against. This has led to their limited social inclusion and participation. In the social diversity of a populous country like India, transgenders are termed as “hijra’s,” belonging to a separate social community. Their experiences, perceptions, and unmet needs are rarely evaluated. Methods: Qualitative approach was used to explore the “lived experience” of 4 individuals who are part of the “hijra” community in Kolkata. These individuals were born with ambiguous primary sex characteristics. In-depth interview was conducted with these participants with subsequent transcription. Interpretative phenomenological analysis (IPA) was used for analysis. Results: A total of 2 superordinate themes (identity issues, relationship issues) and 6 subordinate themes emerged from the analysis (identification with feminine gender, perceptions regarding caregivers, perception regarding siblings, perception regarding childhood peer groups, identification with the hijra community, societal rejection). The findings have been discussed in terms of identity process, social and cultural construal of hijras in this part of the world. Conclusion: In India, the transgenders (hijra community) represent a unique subculture besides the heterosexual groups. Understanding their relationships, sexuality and societal interactions are vital for their psychosocial well-being and related interventions. This study adds to the shared understanding of their marginalization and lived experiences, in their own voices.

scholarly journals DOING AGING IN PLACE IN AN AGE-FRIENDLY CITY: AN APERTURE TO THE LIVED EXPERIENCES OF OLDER SAN FRANCISCANS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S26-S26
Author(s):  
Jarmin C Yeh
Keyword(s):  
Older Adults ◽  
Lived Experience ◽  
Lived Experiences ◽  
Phenomenological Study ◽  
Aging In Place ◽  
Multiple Identities ◽  
Macro Level ◽  
Community Initiatives ◽  
Age In Place ◽  
Distribution Of Resources

Abstract Aging in place finds meaning through the quotidian. The mundanity of this work is the crux of its poignancy. This phenomenological study utilizes photovoice to explore how older adults manage to age in place in an age-friendly city. By interrogating micro- and macro-level realities, this study elicits the strategies seventeen informants use, including how their multiple identities and positionalities become implicated in the process of negotiating and navigating everyday environs, their acts of resistance and resilience, their articulations of hope or pressure to manage the future, as well as the risks and opportunities they encounter and the conditions shaping them, such as urbanization, discrimination, and distribution of resources between generations and groups. To "see" how informants do the “doing” of aging in place has implications for age-friendly community initiatives. It helps to capture the sociality of aging and demonstrates the way the materiality of inequality is sown through lived experience.

scholarly journals The lived experiences of pregnant women during COVID-19 pandemic: a descriptive phenomenological study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Forough Mortazavi ◽  
Fatemeh Ghardashi
Keyword(s):  
Pregnant Women ◽  
Lived Experience ◽  
Lived Experiences ◽  
Phenomenological Study ◽  
Phenomenological Approach ◽  
Descriptive Phenomenology ◽  
Virtual Training ◽  
Pregnancy And Childbirth ◽  
Content Analysis Method ◽  
Depth Interviews

Abstract Background With the onset of the COVID-19 epidemic, pregnancy and childbirth for women are taking place in unusual circumstances. We explored the lived experiences of pregnant women during the COVID-19 pandemic to better understand their experience of pregnancy so that better support could be provided. Methods We used a descriptive phenomenological approach to understand the lived experience of pregnant women in COVID-19 pandemic. We collected data using a purposive sampling method through in-depth interviews in cyberspace with a semi-structured questionnaire. We used Colaizzi’s seven-step content analysis method to analyze the research data with the help of MAXQDA software version 2020. Results We conducted this descriptive phenomenology study on 19 pregnant women in a period between the 10th to the 20th of May, 2020. The participating women were already pregnant when the first signs of the epidemic appeared in the country and at the time of the interview. We acquired four themes including disruption of the tranquility and regular routines of daily life, new challenges caused by the epidemic, resilience and strength in facing the crisis, and adaptation with new conditions. Conclusions The pregnant women were under intense stress during the COVID-19 outbreak. The general mobilization the health system is necessary for alleviating pregnant women’s difficulties in situations like the COVID-19 epidemic. Virtual training classes and virtual counseling may enhance the peace and tranquility of pregnant women.

The Lived Experience of End-Stage Liver Failure and Liver Transplantation

1996 ◽  
Vol 6 (3) ◽  
pp. 130-133 ◽  
Author(s):  
Cheryl D Johnson ◽  
Donna K Hathaway
Keyword(s):  
Social Support ◽  
Liver Transplantation ◽  
Data Analysis ◽  
Liver Failure ◽  
Lived Experience ◽  
Lived Experiences ◽  
Phenomenological Study ◽  
Effect Change ◽  
Tape Record ◽  
End Stage

This phenomenological study examined the lived experience of an individual who underwent end-stage liver failure and liver transplantation. The participant was asked to respond to the question, What was it like for you having experienced end-stage liver failure and liver transplantation? Permission was granted to tape-record the interview. Themes derived from the data analysis were identified, analyzed, and sorted. As a result, four categories were delineated: (1) uncertainty, (2) control, (3) social support, and (4) spirituality. Categories and themes contributing to a description of one individual's experience with end-stage liver failure and liver transplantation may provide direction for interventional studies designed to effect change in the lived experiences of those undergoing similar phenomena.

LIVED EXPERIENCES OF NURSES WITH COVID-19 CARE IN INDIA: A PHENOMENOLOGICAL STUDY

2021 ◽  
pp. 64-72
Author(s):  
Meena Ganapathy ◽  
Shailaja M J Mathews ◽  
Nupoor Bhambid ◽  
Ujwala Jadhav ◽  
Dipali Awate ◽  
...  
Keyword(s):  
Lived Experience ◽  
Health Care Workers ◽  
Lived Experiences ◽  
Phenomenological Study ◽  
Coping Styles ◽  
Phenomenological Approach ◽  
The Third ◽  
Care Workers ◽  
Fourth Theme

Background: In India in March 2020, the Covid-19 started spreading rapidly, bringing pressure and challenges to nursing staff as frontline health care workers. To explore the lived experiences of nurse Objective: s with Covid-19 patient care. Methods: Using a phenomenological approach, 25 nurses were selected as samples. The Results: lived experience of nurses caring for Covid-19 patients is summarized into 4 themes; the second theme was the negative emotions experienced by them with ve subthemes in the third theme, we found them gaining control with subthemes and in the nal fourth theme of growing under pressure, we found three subthemes. Though initially, they struggled with this experience with their perseverance and dedication they slowly gained control of the situation and emerged with the meaning of this experience and insight. Coping styles, new team, and psychological Conclusion: growth played an important role in providing meaning to their new role of warrior.

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