Parents’ Experiences

2010 ◽  
Author(s):  
Jessica J. Otis
Keyword(s):  
Medical Procedures ◽  
Know How ◽  
Eyes Closed ◽  
Medical Issues ◽  
Personal Experiences ◽  
Being There ◽  
Parents Experiences

Editor’s Note: Since not much was known about aniridia for many years some doctors did medical procedures that we now know should not be done on aniridic eyes. Please do not use any specific story here as a guide for your journey, because some of the medical procedures mentioned should not have been done. Furthermore, please make sure to see a doctor with experience and knowledge of anirida. Lastly, please keep in mind, each person’s journey has different medical issues. Not everybody will experience the exact same medical challenges in their journeys. When we face challenges in our lives, we turn to those who love and support us. Yet sometimes it isn’t enough; we need the support of those who know how we are feeling and what we are going through. Parents who have children with aniridia can help each other by talking, lending advice, or just being there with a shoulder lean on. The stories compiled in this chapter are from parents who wish to share their personal experiences and struggles of having a child with aniridia. It is our wish that these stories will give you hope and inspiration as well as show you the love a parent has for a child, even when it seems like there is no light at the end of the tunnel. When I was 29 years old, we were blessed with our third child. We already had two sons, and now we had a little girl! From the very beginning, I knew something was wrong. Amy seemed to keep her eyes closed most of the time. When I took her outdoors, she would bury her head in my shoulder. I told our pediatrician to look at her eyes, and he told us not to worry. He said that she had muscle problems that surgery could correct. Over the months to follow, we decided to see an ophthalmologist. He told us that Amy had been born with a rare eye condition called aniridia.

Procedural Pain: Systematic Review of Parent Experiences and Information Needs

2017 ◽  
Vol 57 (6) ◽  
pp. 672-688 ◽  
Author(s):  
Allison Gates ◽  
Kassi Shave ◽  
Robin Featherstone ◽  
Kelli Buckreus ◽  
Samina Ali ◽  
...  
Keyword(s):  
Neonatal Intensive Care ◽  
Information Needs ◽  
Wound Repair ◽  
Reference Lists ◽  
Active Role ◽  
Medical Procedures ◽  
Know How ◽  
Parent Experiences ◽  
Do So ◽  
Parents Experiences

Parents wish to reduce their child’s pain during medical procedures but may not know how to do so. We systematically reviewed the literature on parents’ experiences and information needs related to managing their child’s pain for common medical procedures. Of 2678 records retrieved through database searching, 5 were included. Three additional records were identified by scanning reference lists. Five studies were qualitative, and 3 were quantitative. Most took place in North America or Europe (n = 7) and described neonatal intensive care unit experiences (n = 5). Procedures included needle-related medical procedures (eg, venipuncture, phlebotomy, intravenous insertion), sutures, and wound repair and treatment, among others. Generally, parents desired being present during procedures, wanted to remain stoic for their child, and thought that information would be empowering and relieve stress but felt unsupported in taking an active role. Supporting and educating parents may empower them to lessen pain for their children while undergoing medical procedures.

Personal Experiences of Individuals with Aniridia

2010 ◽  
Author(s):  
Jessica J. Otis
Keyword(s):  
High School ◽  
The State ◽  
Track And Field ◽  
Medical Procedures ◽  
Normal Vision ◽  
Learning Abilities ◽  
Medical Issues ◽  
Personal Experiences ◽  
Cross Country ◽  
Cub Scouts

Editor’s Note: Since not much was known about aniridia for many years some doctors did medical procedures that we now know should not be done on aniridic eyes. Please do not use any specific story here as a guide for your journey, since some of the medical procedures mentioned should not have been done. Furthermore, please make sure to see a doctor with experience and knowledge of anirida. Lastly, please keep in mind, each person’s journey has different medical issues. Not everybody will experience the exact same medical challenges in their journeys. Many people affected by aniridia go through similar experiences. Some deal with bullies differently than others, and some may have difference experiences with employment-related issues. Whatever experiences you have had in your life, these stories will show that you are not alone. Many others have felt and gone through situations similar to ones you have gone through. It is our hope that these stories inspire and help you with any struggles you may have now or in the future. I was born with a case of sporadic aniridia in 1976 in Maui, Hawaii, to my parents, Mike and Pat. I have one brother two years older who has normal vision, but my mom had a miscarriage of a girl with the same aniridia condition. I had a normal childhood, doing everything the majority of kids did, including soccer, Cub Scouts, body surfing, boogie boarding, and bicycling. In my early teens I competed in outriggered canoe racing. This was questioned due to my vision, but my six-man crew placed first in the state championship regatta. This experience inspired me to continue in the area of sports and enjoy them while testing my limits, which was done with cross-country running and track and field in high school. When I graduated from Maui High School in 1994, it was considered a great accomplishment by my parents and many teachers who had doubts about my learning abilities due to the inability to read the work written on the board.

Comfort while Dying: a Transnational History of Pediatric End of Life Care

2018 ◽  
Author(s):  
Emilie Hill-Smith
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Hospice Care ◽  
Well Being ◽  
Life Care ◽  
The Public ◽  
Depth Analysis ◽  
Personal Experiences ◽  
History Of ◽  
Being There

Through an in-depth analysis of current and historical literature, this thesis explores the question: what is hospice and end of life care for children? I will dissect the various dimensions of children’s hospice care and how it has evolved over time. Also in my thesis, I will draw from my personal experiences in volunteering at a children’s hospice to discuss the support and care that volunteers receive. Through this literature review I hope to bring to light to a subject that is often overlooked or too difficult for people to discuss. I will propose plans to better the care for children and families who are facing the end of life. My thesis will summarize the current literature available about the type of care that children receive worldwide and how this care affects families and children’s well-being. There has been minimal research done on children in end of life due to the topic’s sensitive nature. My goals is to inform the public of an under discussed but important topic in paediatric medicine.

From there to Rehearsing Sex: A space of freedom among theory and the dead meandering to assist with resistance

2007 ◽  
Author(s):  
Christianna Lambrinidis
Keyword(s):  
Queer Theory ◽  
Physical Body ◽  
Sexual Identities ◽  
Eyes Closed ◽  
Personal Experiences ◽  
Constant State ◽  
The Dead ◽  
Power Play

On a rectangular table, four heads recollect their personal experiences of existence. In the absence of physical body no gender or sex differations exist. However, in depicting images of their existence the four heads recall relationships and emotions characterized by all the stereotypes of engendered relations. Submisal, obedience, resistance, are evident. The limits and power play of family and sex bondages are revealed. Through a constant state of sleep and/or death the heads speak with their eyes closed the truths of their selves. Pursuance of pleasure (achieved through sex) and desire of fulfillment motivates their every action and thought and allows to endure the pain that emerges from the lack of completeness. Language is the medium that gives meaning to an existential life, sets the space of one's freedom, constructs or deconstructs reason. "Rehearsing Sex" can be seen/heard as a paradigm of queer theory, where sexual identities and relations are being revised and reconstructed.

Interoceptive Awareness: The ‘Being’ Dimension of ‘Being There’ in Virtual Worlds

2020 ◽  
Vol 32 (1) ◽  
pp. 1-16 ◽  
Author(s):  
Carrie Heeter ◽  
Tom Day ◽  
Leticia Cherchiglia
Keyword(s):  
Virtual Worlds ◽  
Interoceptive Awareness ◽  
Spatial Presence ◽  
Eyes Closed ◽  
Eyes Open ◽  
Display Technology ◽  
Being There ◽  
The Relationship ◽  
Theoretical Conceptualization

Abstract We conducted an exploratory study to introduce, operationalize and test a theoretical conceptualization of interoceptive awareness (IA) in virtual worlds that aligns with neurobiological explanations of interoception. We examined the relationship between IA and the self-location subdimension of spatial presence. Experimental subjects experienced either a 10-min meditation designed to activate IA or a control condition designed to encourage mind wandering. Participants either wore a virtual reality (VR) headset (Samsung Gear VR or HTC Vive) or had their eyes closed. Results suggest that (i) IA was not different between eyes closed or eyes open in VR; (ii) VR display technology did not influence IA; and (iii) higher IA and visual clarity were associated with significantly stronger feelings of spatial presence, whereas display technology had no relationship to spatial presence. Further examination of the role of IA in virtual worlds experiences is warranted.

Social support in women with potential Essure-related complaints: an analysis of Facebook group content (Preprint)

2021 ◽  
Author(s):  
Danielle van Gastel ◽  
Marjolijn L Antheunis ◽  
Kim Tenfelde ◽  
Theodoor E. Nieboer ◽  
Marlies Y Bongers
Keyword(s):  
Social Support ◽  
Support Groups ◽  
Emotional Support ◽  
Know How ◽  
The Social ◽  
Personal Experiences ◽  
Different Types ◽  
Permanent Contraception ◽  
Other Regarding ◽  
Code Book

BACKGROUND Social support groups are an important resource for people to cope with problems. Previous studies have reported the different types of support in these groups, but little is known about the type of reactions that sharing of personal experiences induce among members. It is important to know how and to what extent members of support groups influence each other regarding the consumption of medical care. We researched this in a online Facebook group of women sterilized with Essure®. Essure® was a device for permanent contraception. From 2015 onwards, women treated with Essure® for tubal occlusion raised safety concerns and experience numerous of complaints. OBJECTIVE To evaluate the use of social support in a Facebook community of Essure® Problems Netherlands. METHODS All post in a closed online Facebook group named: Essure Problems Netherlands between March 8 and May 8 of 2018 were included. In total 3,491 Facebook posts were analysed using a modified version on the social support behaviour code created by Cutrona and Suhr (1992). Posts were abstracted and aggregated into a database. Two investigators evaluated the posts, developed a modified version on the social support behaviour code book, and applied codes to data. RESULTS Results show that 92% messages contained a form of social support. In 68,8% of posting social support was given and in 31,2% social support was received. Informational and emotional support are the most frequently used form of given social support (53.4 and 43.6%, respectively). The same distribution is seen with receiving social support: informational support in 81,5% and emotional in 17,4% of the cases. CONCLUSIONS The main purpose of women in the Essure® problems group was to give and receive informational and/or emotional support.

scholarly journals A survey on psychiatry trainees’ experiences of racism

BJPsych Open ◽  
2021 ◽  
Vol 7 (S1) ◽  
pp. S152-S152
Author(s):  
Aicha Rais ◽  
Richard Burton ◽  
Adeel Rauf
Keyword(s):  
Poor Mental Health ◽  
Unconscious Bias ◽  
Know How ◽  
The North ◽  
Personal Experiences ◽  
Sources Of Support ◽  
Education And Employment ◽  
Speak Up ◽  
North And South ◽  
E Mail

AimsTo measure rates of racism experienced and witnessed by trainees training in Derbyshire.BackgroundDerbyshire Healthcare Psychiatry trainee workforce comprises 39.1% white, 52.2% ‘Black, Asian and Minority Ethnic’ (BAME) and 8.7% undisclosed ethnicity. Racism can affect trainees by increasing risk of poor mental health and psychological distress leading to worse health outcomes. Discrimination, marginalisation and segregation is related to poorer quality education and employment opportunities.MethodElectronic surveys were sent out via e-mail to trainees in the North and South Derbyshire Hospital sites, accessible online from 11th to 31st December 2020.Questions asked about personal experiences of racism, witnessing racism from patients and/or staff whilst training in Derbyshire. Trainees were asked if they know how to report incidents and if routinely reported. Trainee ethnicity was recorded.ResultA total of 56 trainees received a survey request. Response uptake rate 25% (14 out of 56). Respondents comprised of 36% white and 64% BAME doctors. Over one third (36%) of trainees reported experiencing racism from staff. 64% of trainees reported experience of racism from patients. There was no report of racism witnessed by staff towards patients. 29% of trainees reported witnessing both staff on staff racism and patient on staff racism. 93% of trainees reported witnessing racism from patients to staff. 29% BAME trainees reported experiencing racism from both staff and patients. 7% BAME trainees said they experienced racism from staff alone. 36% of trainees reported experiencing racism from patients only (4 BAME and 1 white trainee). 57% of trainees do not know how to report racism. 50% of trainees said they would report racism if they knew how.ConclusionRacism remains a barrier affecting the lives of trainees requiring attention. BAME trainees are disproportionately affected by racism, and report witnessing more incidents, from staff and patients in the workplace. There remains an apprehension by doctors to report racism. A departmental presentation has been delivered on racism, unconscious bias, incident reporting process and sources of support. A workshop with the ‘Equality Diversity Inclusion’ team has been delivered to all trainees with the presence of the Freedom to Speak Up Guardian. Our British Medical Association Local Negotiating Committee Representative has also been informed.

scholarly journals Parents’ experiences of collaborating with professionals in the support of their child with profound intellectual and multiple disabilities

2016 ◽  
Vol 21 (1) ◽  
pp. 53-67 ◽  
Author(s):  
Suzanne LG Jansen ◽  
Annette AJ van der Putten ◽  
Carla Vlaskamp
Keyword(s):  
Crucial Role ◽  
Multiple Case Study ◽  
Multiple Disabilities ◽  
Personal Experiences ◽  
Direct Support ◽  
Multiple Case ◽  
The Mean ◽  
Common Function ◽  
Parents Experiences

Background: There is little data on the collaboration between parents and professionals in the support of persons with profound intellectual and multiple disabilities. Since communication is essential to collaboration, this study analysed the frequency, means, and personal experiences of communication between parents and professionals. Method: A multiple case study ( n = 4) was conducted. Observations were logged for every contact between professionals and parents during 12 months. Results: The mean number of contacts a month ranged from 1.9 to 16.7 across the cases. Most of the contacts were with the child’s direct support persons (85.2%) and exchanging information (35.5%) was the most common function. Issues concerning health (28.4%) were the most common subjects discussed. The majority of the mothers’ experiences were positive. Conclusion: Direct support persons play a crucial role; they need to be aware of this role and to be trained to fulfill their role to acknowledge parents as partners.

Embodied Dreams

2017 ◽  
Author(s):  
Jeanne Schul
Keyword(s):  
Jungian Psychology ◽  
Midlife Crisis ◽  
Eyes Closed ◽  
Movement Therapist ◽  
Personal Experiences ◽  
Dance Improvisation ◽  
The Relationship ◽  
Self Reference

In this chapter, the author examines somatic practices with dream images from the perspective of Jungian psychology. A registered somatic movement therapist and depth psychologist, the author reflects on her personal experiences of working two somatic dreams. In particular, she describes her application of the Shin Somatics approach to self-reference touch, teaching through touch, and dance improvisation, as she uses it when working with archetypal dreams. She discusses the relationship between the soma, somatic dreams, the chakra system, and archetypal imagery, and defines these terms in connection with the therapeutic exploration of dreams. She says soma includes the sensations that she experiences—while asleep and awake—that she can identify with her eyes closed. The author concludes by sharing how her work with somatic dreams and dancing the chakras has saved her life on more than one occasion, including her passage through a chaotic midlife crisis.

scholarly journals Know to Change: Intellectualism, gatekeeping and knowledge production

2021 ◽  
Vol 1 (2) ◽  
pp. 71-86
Author(s):  
QURAYSHA BIBI ISMAIL SOOLIMAN
Keyword(s):  
Knowledge Production ◽  
Human Dignity ◽  
Critical Consciousness ◽  
Corporate University ◽  
Know How ◽  
University Of Pretoria ◽  
Personal Experiences ◽  
The University

In order to know how to change one must be able to acknowledge what one does not know. The curriculum cannot be decolonised if those who manage its very problematic existence do not know, understand, or exhibit an inclination towards what needs to be transformed and what needs to be decolonised. This is because no effort is then made to acquire the necessary skills, approaches or knowledge. Central to knowledge production of relevance is the development of a critical consciousness and a recognition that education is politics, where the decolonisation process is imagined, whilst being cognisant of the purpose of and approach to knowledge. Ideologies, pedagogy and societal visions are then shaped because change and adaptation are necessary for survival and relevance. This paper examines these issues by referencing personal experiences during the #FMF protests at the University of Pretoria (UP) and the flowering of intellectualism which has been aborted in many instances by a corporate university that seeks subservience and sycophancy through processes such as gatekeeping. Often, the intellectual response has been silence, claiming ‘we are transforming,’ but this is questionable. A robust intellectual project should be in defence of human dignity where the politics of disposability is not entertained.

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