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Boursnell, Melanie. "Parents With Mental Illness: The Cycle of Intergenerational Mental Illness." Children Australia 36, no. 1 (April 1, 2011): 26–35. http://dx.doi.org/10.1375/jcas.36.1.26.
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This article provides an insight into the under-explored lives of parents with mental illness. In particular, this article considers the experiences of parents with mental illness who grew up with parents who also had mental illness, or experienced issues related to violence, abuse and neglect during childhood. Due to the dearth of research in this area there is minimal insight into how parents experience mental illness and even less significance is placed on exploring how intergenerational mental illness and backgrounds of violence, abuse and neglect impact on parenthood. This qualitative study generates information about how intergenerational family mental illness, and other issues identified in the course of the study, affected the participants' experiences of being a parent.
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Hirshberg, Eliotte L., Jorie Butler, Morgan Francis, Francis A. Davis, Doriena Lee, Fahina Tavake-Pasi, Edwin Napia, et al. "Persistence of patient and family experiences of critical illness." BMJ Open 10, no. 4 (April 2020): e035213. http://dx.doi.org/10.1136/bmjopen-2019-035213.
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ObjectiveTo investigate: (1) patient and family experiences with healthcare and the intensive care unit (ICU); (2) experiences during their critical illness; (3) communication and decision making during critical illness; (4) feelings about the ICU experience; (5) impact of the critical illness on their lives; and (6) concerns about their future after the ICU.DesignFour semistructured focus group interviews with former ICU patients and family members.SettingsMulticultural community group and local hospitals containing medical/surgical ICUs.ParticipantsPatients and family who experienced a critical illness within the previous 10 years.InterventionsNone.Measurements and main resultsFour separate focus groups each lasting a maximum of 150 min and consisting of a total of 21 participants were held. Focus groups were conducted using a semistructured script including six topics relating to the experience of critical illness that facilitated deduction and the sorting of data by thematic analysis into five predominant themes. The five main themes that emerged from the data were: (1) personalised stories of the critical illness; (2) communication and shared decision making, (3) adjustment to life after critical illness, (4) trust towards clinical team and relevance of cultural beliefs and (5) end-of-life decision making. Across themes, we observed a misalignment between the medical system and patient and family values and priorities.ConclusionsThe experience of critical illness of a diverse group of patients and families can remain vivid for years after ICU discharge. The identified themes reflect the strength of memory of such pivotal experiences and the importance of a narrative around those experiences. Clinicians need to be aware of the lasting effects of critical illness has on patients and families.
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Stephens, Ronie K. "Illness and the Corporeal Experience as a Source of Collective Healing in 21st-Century American Poetry." Word and Text - A Journal of Literary Studies and Linguistics 12 (2022) (December 30, 2022): 110–23. http://dx.doi.org/10.51865/jlsl.2022.08.
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Though 21st-century poetics is informed by protests and increasingly nuanced conversations about intersectional experiences, representations of chronic and acute illness are fairly rare. Even in the post-confessional era, with poets embracing vulnerability, ableism continues to dominate the genre. However, several poets have embraced their respective illnesses, centring their experiences not as wholly traumatic but as gracefully human. I argue that poets like Danez Smith, Andrea Gibson, Rachel McKibbens and others help insert acute and chronic illness into conversations about American poetics. American literature has long been complacent regarding the erasure of people living with illness, as well as its tendency to sensationalise trauma rather than centre the human experience in stories of illness. 21st-century poets are challenging this paradigm, effectively transforming their respective illnesses into a catalyst for activism and grounding their experiences in representations of the corporeal as flawed, vulnerable and yet miraculous.
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Lucas, Shawn. "Assessing Transcendental Experiences vs Mental Illnesses." Journal of Pastoral Care & Counseling: Advancing theory and professional practice through scholarly and reflective publications 71, no. 4 (December 2017): 267–73. http://dx.doi.org/10.1177/1542305017737780.
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In our experience, being able to differentiate between mental illness and transcendent experiences has led patients to remain engaged in treatment. This is important since those who have experienced religious preoccupation are the least likely to seek out mental health care. We have developed a “Transcendent Assessment Tool” to assist clinicians and clients in discerning whether an experience is a delusion or part of a transcendent experience.
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Matcha, Duane A., Richard Tessler, and Gail Gamache. "Family Experiences with Mental Illness." Contemporary Sociology 30, no. 5 (September 2001): 527. http://dx.doi.org/10.2307/3089368.
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Schroder, Patricia J. "Family Experiences With Mental Illness." Journal of Psychosocial Nursing and Mental Health Services 39, no. 3 (March 2001): 53–54. http://dx.doi.org/10.3928/0279-3695-20010301-16.
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Ensign, Josephine, and Michelle Bell. "Illness Experiences of Homeless Youth." Qualitative Health Research 14, no. 9 (November 2004): 1239–54. http://dx.doi.org/10.1177/1049732304268795.
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Świtaj, P., J. Wciórka, J. Smolarska-Świtaj, and P. Grygiel. "Extent and predictors of stigma experienced by patients with schizophrenia." European Psychiatry 24, no. 8 (December 2009): 513–20. http://dx.doi.org/10.1016/j.eurpsy.2009.06.003.
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AbstractBackgroundSchizophrenia is regarded as one of the most stigmatized mental illnesses. Relatively few studies have investigated actual stigma experiences among people with schizophrenia and the factors which may contribute to it.AimsThis cross-sectional study assesses the extent of stigma experienced by patients with schizophrenia and attempts to establish its clinical and sociodemographic predictors.MethodsA total of 153 subjects with schizophrenia (62 outpatients and 91 inpatients) were evaluated with the use of the Stigma section of the Consumer Experiences of Stigma Questionnaire (CESQ) and several instruments measuring their subjective quality of life, social functioning and severity of psychiatric symptoms.ResultsStigmatization experiences were common among respondents who most frequently reported having concealed their illness (86%), witnessed others saying offensive things about the mentally ill (69%), worried about being viewed unfavorably (63%) and been treated as less competent (59%). Higher levels of stigma were related to lower subjective quality of life and younger age of illness onset. No significant associations were found between stigma and symptoms or level of social functioning.ConclusionOur findings point at the reduced life satisfaction as a key aspect of the subjective experience of the stigma of schizophrenia.
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McIver, Samantha, and Jane Toms. "An Exploratory Pilot Study Into Undergraduate Physiotherapy Students' Perceptions Of Working With Patients With Mental Illness And Working Within The Mental Health Sector Of Health Care." International Journal of Therapy and Rehabilitation 26, no. 6 (June 2, 2019): 10. http://dx.doi.org/10.12968/ijtr.2019.26.6.10.
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Background/Aims Mental illness is widespread throughout the United Kingdom with increasing prevalence. As mental illness affects such a large proportion of the population, it is likely that healthcare professionals, including qualified and student physiotherapists, will work with patients in all areas of healthcare, who have mental illness alongside co-morbidities. Physiotherapy students are placed into a wide range of placements throughout an undergraduate degree to develop skills and autonomy in rehabilitation. Understanding students' perspective appears relatively unexplored and was stimulated by personal experience of the first author where patients' rehabilitation could be impacted by mental illness. The impact varied depending on the severity of their illness, as well as the understanding of that illness by the multidisciplinary team involved in their care. The aim of this phenomenological study was to: explore physiotherapy students' lived experiences and perceptions of working with patients with mental illness, despite no mental health specific placement and understand their views of working in the mental health sector of healthcare Methods Ethical approval was obtained from Coventry University Ethics and a qualitative methodology was applied. Purposeful sampling was used to recruit six participants, who were all Undergraduate physiotherapy students at Coventry University, and data were collected via a focus group. The focus group explored their lived experiences, opinions and perceptions. Results A number of themes were discovered from the data, with associated sub-themes: ‘Lack of clarity’ with sub-themes: ‘Definitions, Terminology and understanding’, ‘Mental illnesses’ and ‘Physiotherapist role’ ‘Emotional Roller-Coaster’ with sub-themes: ‘Negative reactions’ and ‘Positive sentiments’ ‘Transferable skills’ with sub-themes: ‘Core competencies’ and ‘Core skills to elevate’ ‘Everyone has a story to tell’ with sub-themes: ‘Job’, ‘Placement’ and ‘Personal experience’ The themes influenced their ‘curious intrigue’, which related to their views of working in the mental health sector of health care. Conclusions All participants in the study had experiences to discuss and found it challenging to provide effective rehabilitation, appropriate to the patients' needs. Discussing these experiences evoked a complex range of perceptions and emotions.
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Riffel, Taylor, and Shu-Ping Chen. "Exploring the Knowledge, Attitudes, and Behavioural Responses of Healthcare Students towards Mental Illnesses—A Qualitative Study." International Journal of Environmental Research and Public Health 17, no. 1 (December 18, 2019): 25. http://dx.doi.org/10.3390/ijerph17010025.
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Background: The stigma of mental illness causes delays in seeking help, and often compromises victims’ therapeutic relationships with healthcare providers. The knowledge, attitudes, and behavioural responses of future healthcare professionals toward individuals with mental illnesses are explored here to suggest steps that will reduce mental illness stigma in healthcare providers. Methods: A generic qualitative approach—Qualitative Description—was used. Eighteen students from nine healthcare programs at a Canadian University participated in individual semi-structured interviews. Participants answered questions regarding their knowledge, attitudes, and behavioural responses towards individuals with mental illnesses. Thematic content analysis guided the data analysis. Results: Four main themes were constructed from the data: positive and negative general perceptions toward mental illness; contact experiences with mental illnesses; mental illness in a healthcare setting; and learning about mental illness in healthcare academia. Conclusions: Students showed well-rounded mental health knowledge and mostly positive behaviours toward individuals with mental illnesses. However, some students hold stigmatizing attitudes and do not feel prepared through their academic experiences to work with individuals with mental illnesses. Mental health education can reduce the stigma toward mental illness and improve the care delivered by healthcare professionals.
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Ní Chianáin, Linda, Richard Fallis, Jenny Johnston, Nancy McNaughton, and Gerard Gormley. "Nothing about me without me: a scoping review of how illness experiences inform simulated participants’ encounters in health profession education." BMJ Simulation and Technology Enhanced Learning 7, no. 6 (June 17, 2021): 611–16. http://dx.doi.org/10.1136/bmjstel-2021-000886.
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BackgroundPerson-centred simulation in health professions education requires involvement of the person with illness experience.ObjectiveTo investigated how real illness experiences inform simulated participants’ (SP) portrayals in simulation education using a scoping review to map literature.Study selectionArksey and O’Malley’s framework was used to search, select, chart and analyse data with the assistance of personal and public involvement. MEDLINE, Embase, CINAHL, Scopus and Web of Science databases were searched. A final consultation exercise was conducted using results.Findings37 articles were within scope. Reporting and training of SPs are inconsistent. SPs were actors, volunteers or the person with the illness experience. Real illness experience was commonly drawn on in communication interactions. People with illness experience could be directly involved in various ways, such as through conversation with an SP, or indirectly, such as a recording of heart sounds. The impact on the learner was rarely considered.ConclusionAuthentic illness experiences help create meaningful person-centred simulation education. Patients and SPs may both require support when sharing or portraying illness experience. Patients’ voices profoundly enrich the educational contributions made by SPs.
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Coats, Heather, Janice D. Crist, Ann Berger, Esther Sternberg, and Anne G. Rosenfeld. "African American Elders’ Serious Illness Experiences." Qualitative Health Research 27, no. 5 (July 9, 2016): 634–48. http://dx.doi.org/10.1177/1049732315620153.
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The foundation of culturally sensitive patient-centered palliative care is formed from one’s social, spiritual, psychological, and physical experiences of serious illness. The purpose of this study was to describe categories and patterns of psychological, social, and spiritual healing from the perspectives of aging seriously ill African American (AA) elders. Using narrative analysis methodology, 13 open-ended interviews were collected. Three main patterns were “prior experiences,” “I changed,” and “across past, present experiences and future expectations.” Themes were categorized within each pattern: been through it . . . made me strong, I thought about . . . others, went down little hills . . . got me down, I grew stronger, changed priorities, do things I never would have done, quit doing, God did and will take care of me, close-knit relationships, and life is better. “Faith” in God helped the aging seriously ill AA elders “overcome things,” whether their current illness or other life difficulties.
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Clay, Daniel L., Sandra Cortina, Dennis C. Harper, Karen M. Cocco, and Dennis Drotar. "Schoolteachers' Experiences With Childhood Chronic Illness." Children's Health Care 33, no. 3 (September 2004): 227–39. http://dx.doi.org/10.1207/s15326888chc3303_5.
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Chernomas, Wanda M., Kendra L. Rieger, Jane V. Karpa, Diana E. Clarke, Shelley Marchinko, and Lisa Demczuk. "Young womenʼs experiences of psychotic illness." JBI Database of Systematic Reviews and Implementation Reports 15, no. 3 (March 2017): 694–737. http://dx.doi.org/10.11124/jbisrir-2016-002942.
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Locock, Louise, Richard Lehman, and Ronald M. Epstein. "Sharing Experiences of Illness and Care." JAMA Internal Medicine 177, no. 9 (September 1, 2017): 1249. http://dx.doi.org/10.1001/jamainternmed.2017.1935.
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Bailey-Pearce, Oliver, Jacqui Stedmon, Rudi Dallos, and George Davis. "Fathers’ experiences of their child’s life-limiting condition: An attachment narrative perspective." Clinical Child Psychology and Psychiatry 23, no. 3 (October 4, 2017): 381–97. http://dx.doi.org/10.1177/1359104517730115.
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When a child has a life-limiting illness, parental involvement is amplified, having to respond to the increased needs of the child. Both parents are affected by the illness, yet research has largely under-represented fathers’ experiences of their child’s illness. Seven fathers were interviewed about their experiences with their child’s life-limiting illness. In addition, fathers’ attachment strategies were assessed using the Adult Attachment Interview. Narrative analysis was implemented to explore the interviews, and indicators of attachment markers employed in the Adult Attachment Interview were also identified. The dominant themes were found to be ‘experience of the diagnosis’, ‘living with the illness’, ‘struggling with emotions’ and ‘relationship with staff’. Within each theme, there were differences which related to the father’s attachment strategies. This was particularly evident in parts of their narratives recounting critical moments of threat and anxiety in the course of discovering and adjusting to their child’s illness. Importantly, the findings also suggested that the experience for the fathers stressed, and in some cases disrupted, their attachment coping strategies. All fathers told stories of trying to get it right for their children and family. Their experiences of, and adjustment to, the illness were related to their attachment strategies. The clinical implications for health professionals are discussed.
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Furqan, Zainab, Mark Sinyor, Ayal Schaffer, Paul Kurdyak, and Juveria Zaheer. "“I Can’t Crack the Code”: What Suicide Notes Teach Us about Experiences with Mental Illness and Mental Health Care." Canadian Journal of Psychiatry 64, no. 2 (July 16, 2018): 98–106. http://dx.doi.org/10.1177/0706743718787795.
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Objective: While mental illness is a risk factor for suicidal behaviour and many suicide decedents receive mental health care prior to death, there is a comparative lack of research that explores their experiences of mental illness and care. Suicide notes offer unique insight into these subjective experiences. Our study explores the following questions: “How are mental illness and mental health care experienced by suicide decedents who leave suicide notes?” and “What role do these experiences play in their paths to suicide?” Method: We used a constructivist grounded theory framework to select a focus of qualitative analysis and engage in line-by-line open coding, axial coding, and theorizing of the data. Our sample is a set of 36 suicide notes that explicitly make mention of mental illness and/or mental health care, purposefully selected from a larger sample of 252 notes. Results: The primary themes from our sample were 1) negotiating personal agency in the context of mental illness, 2) conflict between self and illness, and 3) experiences of mental health treatment leading to hopelessness and self-blame. These experiences with mental illness and mental health care can give rise to exhaustion and a desire to exercise personal agency, contributing to suicidal behaviour. Conclusions and Relevance: This study highlights unique perspectives by suicide decedents, whose voices and experiences may not have been heard otherwise, addressing a critical deficit in existing literature. These insights can potentially enrich clinical care or strengthen existing suicide prevention programs.
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Oh, Hans, Ai Koyanagi, Jordan E. DeVylder, and Eduardo A. Leiderman. "Psychotic experiences and psychiatric treatment utilization in Buenos Aires." International Journal of Social Psychiatry 66, no. 4 (February 29, 2020): 344–48. http://dx.doi.org/10.1177/0020764020907628.
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Objective: Psychotic experiences are associated with psychiatric treatment utilization, though findings have not been entirely consistent. Furthermore, it is unclear how psychotic experiences relate to specific types of psychiatric treatment, and whether mental illness moderates these associations. Methods: In total, 1,036 adult residents of Buenos Aires were recruited through convenience sampling in public places. Multivariable logistic regression models examined the associations between psychotic experiences and psychiatric treatment, adjusted for age, sex and education. Analyses were then stratified by diagnosis of mental illness. Results: Approximately 17.95% ( N = 186) of the sample reported at least one psychotic experience over the past week, about 22.39% ( N = 232) of the sample was receiving some psychiatric or psychological treatment and 8.59% ( N = 89) was receiving psychopharmacological treatment. In the total sample, psychotic experiences were associated with greater odds of being in psychiatric/psychological treatment (adjusted odds ratio (AOR): 1.52; 95% confidence interval (CI): 1.05–2.21) and psychopharmacological treatment (AOR: 2.49; 95% CI: 1.52–4.09), adjusted for age, sex and education. Mental illness did not moderate the association between psychotic experiences and psychiatric/psychological treatment, but did moderate the association between psychotic experiences and psychopharmacological treatment. Among people with mental disorders, psychotic experiences were associated with greater odds of receiving psychopharmacological treatment (AOR: 14.63; 95% CI: 1.73–123.45) versus people without mental disorders (AOR: 1.75; 95% CI: 0.98–3.15). Conclusion: Psychotic experiences are associated with psychiatric treatment utilization, particularly psychopharmacological treatment among people with a co-occurring mental illnesses. Translational research should explore the utility of psychosis screens in assessing need for medication or clinical responsiveness to medications.
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Gray, Jennifer B., Wendy Winn, Joseph A. Cazier, and Sam Volstad. "Stories of Breast Cancer: Using Textual Analysis and Analytics to Understand Better the Illness Experience." International Journal of Multiple Research Approaches 12, no. 2 (August 31, 2020): 202–15. http://dx.doi.org/10.29034/ijmra.v12n2a3.
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Breast cancer, the second most common cancer among women, is a multidimensional experience, leading to stressors associated with pain, trauma, emotional upheaval, changes in identity and roles, and fear of death. Although certain aspects of breast cancer are universal, many elements are particular to the illness experience of individual patients. Increasingly, patients’ writing about their illness experiences has been shown to help in understanding and making sense of such experiences. A rich supply of stories are available online as women share their stories through social media. To examine these stories, the present article details a novel mixed methods text analytics study of a large sample of blogs revealing clusters of meaning surrounding the breast cancer experience. This approach includes quantitative methods that allow for gleaning of clusters of meaning pertaining to women’s use of frequently associated words, whereas qualitative methods allow for interpretation through close textual analysis of women’s words as well as generated clusters. The most frequent and least frequent clusters suggest stronger associations of support communities, as well as daily and clinical experiences with the illness, and very infrequent associations of prevention and detection information. Results suggest new methodological avenues for exploring illness experiences, as well as areas for improvement in supporting women with breast cancer and potential holes in prevention and detection information surrounding the illness.
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Malik, Beenish, Novel Lyndon, and Yew Wong Chin. "Health Status and Illness Experiences of Refugee Scavengers in Pakistan." SAGE Open 10, no. 1 (January 2020): 215824402091456. http://dx.doi.org/10.1177/2158244020914562.
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Scavengers are continuously exposed to several health hazards which affect their quality of life. The phenomenon of scavenging in Pakistan is on the rise but literature on scavengers’ health and illness is limited. Hence, this study intends to add to the knowledge by exploring the health status and illness experiences of refugee scavengers using phenomenology approach. Thirty-one adult male Afghan refugee scavengers (with at least 5 years of work experience) were recruited in this qualitative study through purposive sampling. To collect the lived experiences, this study predominantly relied on open-ended, face-to-face, semistructured, and in-depth interviews by using an interview protocol. The qualitative data analyzed with Max van Manen’s hermeneutic phenomenological reflection revealed that all the scavengers were experiencing multiple health problems ranging from minor to chronic illnesses. These health issues were frequent in nature and had affected their overall life mostly daily activities, job, and earnings. The study concludes with the need to increase literacy among scavengers, raise their health awareness and usage of personal protective equipment at work.
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Zucchetti, Giulia, Sabrina Ciappina, Cristiana Risso, Alice Malabaila, Sara Racalbuto, Elena Longo, Margherita Dionisi Vici, Marina Bertolotti, Paola Quarello, and Franca Fagioli. "No Child Should Be Left Behind by COVID-19: A Report about the COVID-19 Pandemic Experience in Children and Adolescents with Acute or Chronic Disease Treated at a Pediatric Referral Hospital in Italy." Pediatric Reports 15, no. 1 (January 28, 2023): 58–68. http://dx.doi.org/10.3390/pediatric15010008.
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Background: The pandemic of coronavirus disease 2019 (COVID-19) was undoubtedly a stressful experience for everyone. General opinion believed that children with acute or chronic illness could experience additional burden, but this is not confirmed. The aim of this study is to understand how children and adolescents already suffering from acute or chronic illness (e.g., cancer, cystic fibrosis, neuropsychiatric disorders) feel about the COVID-19 pandemic, and if the experience is significantly different between these children and children without illness. Methods: Children and adolescents affected by acute or chronic illness (named the “fragile group”) treated at the Regina Margherita Children Hospital in Italy, were enrolled in the study by filling a questionnaire about their pandemic experiences. Also, a group of children and adolescents without acute or chronic illness (named the “low-risk group”) recruited in the emergency department of the hospital, participated in the study in order to compare experiences. Results: The study group was composed of 166 children and adolescents (Median age = 12 yrs; 78% fragile group, 22% low-risk group). Participants experienced a general state of fear of the virus and of a potential infection for both themselves and their families, while feelings and thoughts that interfere with daily functioning were less frequent. The fragile group seems to be more resilient towards the pandemic situation than low-risk group and some differences on the basis of the type of illness were found in the fragile group. Conclusions: Dedicated psychosocial intervention must be proposed in order to support fragile children and adolescents’ well-being during the pandemic, also on the basis of their clinical and mental history.
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Liao, Su-Jung, Jiin-Ru Rong, Tse-Tsung Liu, and Hsiao-Ju Sun. "The Life Experiences of Community Older Adults With Mental Illness in Taiwan: A Qualitative Study." International Journal of Studies in Nursing 3, no. 1 (November 3, 2017): 158. http://dx.doi.org/10.20849/ijsn.v3i1.362.
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Aims: The risk of mental illness and mental health problems is known to increase with aging, there is a continuing need for research and information about the daily life and care needs of elderly people with mental illness. The aim of this study was to examine the real-life experience of elderly outpatients with mental illnesses in Taiwan communities through in-depth interviews.Methods: A qualitative study involving semi-structured interviews of mentally ill elderly patients was conducted in 15 participants (3 men and 12 women, mean age = 74.67 years, SD = 10.04 years).Results: The willpower to survive and cope with aging and mental health problems was identified as the core category of the life experiences in the older adults in this study. The struggle with the stress of aging and mental health problems was categorized in life-experience terms as ‘bear the bitterness of life,’ ‘adhere to psychiatric treatment and use resources to cope with life’s stress,’ ‘maintain the willpower to survive’. Results of this study shown that although elderly patients in community have had many stressful life experiences and problems with mental illness, they will continue to show strength to coping with the problems of aging and mental illnesses.Conclusions: The elderly mental illness patients could coping with their problems, and maintain an active lifestyle, accept the reality and arrange life, and connect with the community. Therefore, health professionals should help elderly people find new strategies to maintain their mental health and to function in their communities.
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Kim, Ji Eun. "Illness Experiences of Adolescents with Type 1 Diabetes." Journal of Diabetes Research 2022 (December 20, 2022): 1–10. http://dx.doi.org/10.1155/2022/3117253.
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Objective. This study is aimed at exploring the illness experiences of adolescents with type 1 diabetes (T1D). Methods. Using semistructured questions, 12 adolescents with T1D in Korea were interviewed regarding their illness experiences. Data were analyzed using grounded theory methodology. Results. Participants described their experiences in the core category, “becoming myself again,” which resulted in 130 concepts, 36 subcategories, 13 categories, and five themes. The themes included tied, overwhelmed, running away, struggling, and conciliating. Tied, the first process, entailed three categories: “confined to blood sugar control,” “feeling constrained,” and “supervised by parents.” The overwhelmed process included “self-banished” and “surrounded by stigma.” Running away included three categories—“growing up,” “folding,” and “withdrawal.” Struggling entailed “seeking for solution to overcome,” “developing response skills,” and “accepting help.” The last process, conciliating, included “redefining my perspective” and “reconciling with myself.” Conclusions. The findings indicate that the illness experience of adolescents with T1D should be understood in terms of both physical and psychosocial dimensions, considering the sociocultural and developmental context. The results of this study provide valuable information on diabetes education. Moreover, these findings encourage nurses to develop intervention programs and strategies to help adolescents with T1D.
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Rojas-Alcayaga, Gonzalo, Andrea Herrera, Iris Espinoza, Matías Rios-Erazo, Jacqueline Aguilar, Loreto Leiva, Nailah Shakhtur, Pamela Wurmann, and Rinie Geenen. "Illness Experience and Quality of Life in Sjögren Syndrome Patients." International Journal of Environmental Research and Public Health 19, no. 17 (September 2, 2022): 10969. http://dx.doi.org/10.3390/ijerph191710969.
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Sjögren’s syndrome (SS) is a disease with autoimmune features that affects mainly women and compromises the health-related quality of Life (HRQoL); it is important to evaluate illness experience for a better understanding of the life situation of the patient. The aim of the study was to summarize the individual life experiences and determine the impact of HRQoL and oral health-related quality of life (OHRQoL) and their correlation with health self-assessment in women with SS. The life experiences evaluation employed a concept mapping design to structure qualitative content obtained from semi-structured interviews. Hierarchical cluster analysis was used to analyze the patient’s experiences. EQ-5D-5L and OHIP-14Sp were used. The correlation between appreciation of the general health status and OHIP-14 was evaluated. The experience classification by patients were analyzed and a dendrogram was obtained, identifying 10 clusters of disease experiences of SS, being limitations, pain and difficulties, coping and attitudes towards treatment the most common. Pain/discomfort in EQ-5D-5L and physical pain and psychological discomfort in OHIP-14 were the most affected dimensions in the patients. The results support the theoretical perspective that the experience of illness is relevant to describing the main difficulties of patients with SS and how it affects their quality of life.
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Nygård, Louise, and Lena Borell. "A Life-World of Altering Meaning: Expressions of the Illness Experience of Dementia in Everyday Life over 3 Years." Occupational Therapy Journal of Research 18, no. 2 (April 1998): 109–36. http://dx.doi.org/10.1177/153944929801800203.
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The aim of this study was to describe the illness experiences of two participants with dementia, as expressed in their everyday lives during 3 years of disease progression. Data were collected at intervals by participant observations and conversational interviews and analyzed via a phenomenological and interpretive method. The findings describe an illness experience characterized by an altering meaning of the concretely present life-world for the participants. This was exhibited by an increasingly existential meaning of the objects and tasks of everyday life, while the perception of the life-world as taken for granted seemed to gradually decrease. Furthermore, participants experienced being threatened by a lack of order and control and uniquely responded to these experiences. Living with the changes and the threat seemed to imply insecurity and doubtful hope, diminishing social contacts, and increasing dependency, but the meaning of the consequences differed between participants. On the basis of the presented structure of the phenomena, a possible way of understanding the illness experience and its meaning in progressively dementing diseases in the occupations of everyday life was exemplified and suggested from a phenomenological point of view.
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Sile, Agnese. "Exploring Intimacy in Collaborative Photographic Narratives of Breast Cancer." Humanities 9, no. 1 (March 18, 2020): 27. http://dx.doi.org/10.3390/h9010027.
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A life-limiting illness brings about heightened awareness of mortality and reshapes close relationships. Couples must often negotiate and adjust their actions to sustain intimate bonds. Through analysis of two projects—Dorothea Lynch’s and Eugene Richards’s collaborative project Exploding into Life (1986) that documents Lynch’s experience living with breast cancer through photographs and text, and Angelo Merendino’s e-book The Battle we Didn’t Choose—My Wife’s Fight with Breast Cancer (2013), I explore how couples make sense of and communicate illness experience. Exploding into Life and Merendino’s project are not only explorations of Lynch’s and Jennifer’s experiences living with breast cancer; the works also question what it means to be seen through the eyes of the other. The projects share similar experiences; however, they are situated in two different historical moments. Taking Arthur Kleinman’s argument of illness experience as social and political as a starting point, I question the limits of experience and examine how the photographs and the accompanying text articulate and mediate private expressions of illness, and what motivates the participants of the photographic act to make their experiences public. The study is informed by Arthur W. Frank’s dialogical narrative analysis and some of the writings by Thomas G. Couser, Roland Barthes, and Michel Foucault.
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Fearnley, Rachel, and Jason W. Boland. "Parental Life-Limiting Illness: What Do We Tell the Children?" Healthcare 7, no. 1 (March 20, 2019): 47. http://dx.doi.org/10.3390/healthcare7010047.
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Being diagnosed with and having a life-limiting illness is a stressful experience which is compounded when the patient has dependent children. An important aspect of the patient’s psychosocial care should include recognition that their children are also likely to experience severe stress because of the illness. However, children’s needs are often overlooked during the illness. These needs include information about the illness. Health care professionals have a significant role in supporting patients to communicate with their children. This study aims to increase our understanding of children’s experiences when a parent has a life-limiting illness by exploring bereaved children’s experiences of the support they received when their parent had a life-limiting illness, and professionals’ perspectives of the support offered to children. 7 children (aged between 9 and 24), and 16 health care professionals were interviewed about communication during parental illness. Children report needing open, clear and age appropriate conversations with parents and health care professionals to help them begin to obtain some meaning from the situation. The importance of communication is discussed, with particular reference to the role health care professionals have in supporting these conversations.
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Smith, Chris. "DIPEx personal experiences of health and illness." Nursing in Critical Care 11, no. 5 (September 2006): 261. http://dx.doi.org/10.1111/j.1478-5153.2006.0182_6.x.
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Nakamura, Sachiyo, and Akihiro Shuda. "The Experiences of Working Nurses with Illness." Journal of Japan Academy of Nursing Science 37 (2017): 336–43. http://dx.doi.org/10.5630/jans.37.336.
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Joyce, Terry, Michael Hazelton, and Margaret McMillan. "Nurses with mental illness: Their workplace experiences." International Journal of Mental Health Nursing 16, no. 6 (December 2007): 373–80. http://dx.doi.org/10.1111/j.1447-0349.2007.00492.x.
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Bülow, Pia H. "Sharing Experiences of Contested Illness by Storytelling." Discourse & Society 15, no. 1 (January 2004): 33–53. http://dx.doi.org/10.1177/0957926504038943.
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Kralik, Debbie, Kerry Telford, Kay Price, and Tina Koch. "Women's experiences of fatigue in chronic illness." Journal of Advanced Nursing 52, no. 4 (November 2005): 372–80. http://dx.doi.org/10.1111/j.1365-2648.2005.03602.x.
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Montgomery, Phyllis, Sharolyn Mossey, Patricia Bailey, and Cheryl Forchuk. "Mothers with Serious Mental Illness: Their Experience of “Hitting Bottom”." ISRN Nursing 2011 (April 13, 2011): 1–8. http://dx.doi.org/10.5402/2011/708318.
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This study sought to understand the experience of “hitting bottom” from the perspective of 32 mothers with serious mental illness. Secondary narrative analysis of 173 stories about experiences related to hitting bottom were identified. Enactment of their perceived mothering roles and responsibilities was compromised when confronted by the worst of illness. Subsequent to women's descent to bottom was their need for a timely and safe exit from bottom. An intense experience in bottom further jeopardized their parenting and treatment self-determination and, for some, their potential for survival. The results suggest that prevention of bottom is feasible with early assessment of the diverse issues contributing to mothers' vulnerabilities. Interventions to lessen their pain may circumvent bottom experiences. Healing necessitates purposeful approaches to minimize the private and public trauma of bottom experiences, nurture growth towards a future, and establish resources to actualize such a life.
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Lian, Olaug S., and Geir Fagerjord Lorem. "“I Do Not Really Belong Out There Anymore”." Qualitative Health Research 27, no. 4 (July 9, 2016): 474–86. http://dx.doi.org/10.1177/1049732316629103.
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In this article, we explore relations between health, being, belonging and place through an interpretive thematic analysis of autobiographic text and photographs about the everyday lives of 10 women and men living with medically unexplained long-term fatigue in Norway. While interpreting their place-related illness experiences, we ask: How do they experience their being in the world, where do they experience a sense of belonging/not belonging, and why do places become places of belonging/not belonging? The participants describe experiences of (a) being socially detached and alienated, (b) being imprisoned, (c) being spectators who observe the world, and (d) senses of belonging. They describe senses of being and belonging/not belonging as closely attached to physical and symbolic aspects of places in which they reside, and they wistfully reflect on the question of “why.” The study illustrates the influence of experienced place—material as well as immaterial—on health and illness.
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Hupcey, JE, and HE Zimmerman. "The need to know: experiences of critically ill patients." American Journal of Critical Care 9, no. 3 (May 1, 2000): 192–98. http://dx.doi.org/10.4037/ajcc2000.9.3.192.
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BACKGROUND: Critically ill patients vary in their memories of their experience in the intensive care unit. Some have little recall and need to learn about their critical illness. Others have more vivid memories of their experiences, some of which were extremely unpleasant. Patients' not knowing what was happening may have exacerbated the unpleasant experiences. OBJECTIVES: To elicit the experience of knowing for critically ill patients and to explore the differences in perceptions between patients who were intubated and those who were not intubated during the illness. METHODS: Grounded theory was used to explore the meaning of knowing and not knowing and the process by which knowing occurs. Unstructured interviews were done with 14 patients. RESULTS: Knowing had 2 phases: the need to know (1) during and (2) after the critical illness. The first phase had 3 facets: needing information, needing to be oriented, and having confusing perceptions. The second phase had 2 facets: needing information about what had happened and piecing together events. Many experiences with knowing during and after a critical illness were similar for both intubated and nonintubated patients. The main difference was the intensity of the experience in some categories. CONCLUSIONS: Critically ill patients have a strong need to know throughout and after their time in the intensive care unit. Nurses must address this need for constant reorientation to the past and present in these patients. In addition, adequate nursing staff must be available for these patients.
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Lanis, Aviya, Emilee Tu, Malki Peskin, Maryann Melendez, Gabriel Tarshish, Alisha Akinsete, Alicia Hoffman, Kathleen Kenney-Riley, Tamar Rubinstein, and Dawn Wahezi. "Storytelling of Young Adults with Chronic Rheumatologic Illnesses: A Pilot Study." Healthcare 10, no. 10 (October 9, 2022): 1979. http://dx.doi.org/10.3390/healthcare10101979.
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Background: Narrative medicine allows patients to reconstruct medical experiences through written portrayals of perspectives, building a mutual depiction of illness while creating a sense of belonging. This modality has not been previously studied in youth with rheumatologic illnesses, a population with high mental health burden and worse health-related quality of life. We aimed to assess the feasibility of a storytelling intervention in this patient population. Methods: This is a mixed-methods study of 14–21-year-olds with rheumatologic diseases followed in the Bronx, NY. Participants completed an hour-long creative writing session focused on patient experience with chronic disease. Pre- and post-questionnaires assessed patient-reported outcomes, and post-participation video interviews assessed personal experiences through the storytelling session. Results: Thirteen female patients were divided amongst four creative writing sessions. Twelve patients completed pre-study questionnaires and 10 completed post-study questionnaires, with 100% completion of the post-participation interviews. PedsQL surveys showed statistically significant improvement in physical health (p < 0.02), and there was no significant difference between pre- and post-scores for any other questionnaires. Interview thematic domains included writing motivation, prior writing experience, illness experience, relating to others, relationship with providers, and support. Conclusion: Creative writing is a feasible and acceptable intervention for youth with rheumatologic illnesses.
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Damsgaard, Janne Brammer, Lene Bastrup Jorgensen, Annelise Norlyk, James Thomas, and Regner Birkelund. "Acknowledging the patient with back pain: A systematic review based on thematic synthesis'." European Journal for Person Centered Healthcare 3, no. 1 (February 11, 2015): 37. http://dx.doi.org/10.5750/ejpch.v3i1.862.
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Rationale and aims: Research shows that back patients’ illness experiences affect their interaction with the healthcare system. It is important to examine the exact nature of these experiences in order to shed valuable light on how back patients perceive their illness and hospitalisation. The aim of this literature review is to gain a better understanding of back patients’ illness experiences and to identify, systematise and integrate the findings of different qualitative studies that may elucidate barriers and the consequences or focal points in connection with care and treatment. Methods: The methodology for this literature review is based on the thematic synthesis used by James Thomas and Angela Harden. The literature review also draws on the sociological theories and arguments of Ulla Harriet Jensen and Trine Dalsgaard in which health professionals biological perception of the individual dominates the healthcare system and translates into a certain way of perceiving and explaining illnesses and symptoms. Results: The thematic analysis shows that it is through experiences and memories that we create our identity and consciousness. Ignoring the illness experiences can therefore be seen as disregarding, the patient as a human being. With this in mind, it is easier to understand why back patients often feel marginalised and mistrusted in their interactions with the healthcare system. Respectfully including the patients’ experiences is fundamentally about acknowledging the back patient as a human being. Conclusions: A synthesis of the included studies demonstrates the need for healthcare professionals to pay attention to back patients’ narratives in order to acknowledge them as human beings. This acknowledgement involves an ethical dimension and a sense of responsibility, manifested as respectful inclusion of the patient’s experiences. The body can never be understood merely as a biological entity and therefore illness is far more than having symptoms, diagnoses and treatment. The synthesis thus proposes an acknowledgment of this and a more holistic approach.
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Loganathan, Santosh, and R. Srinivasa Murthy. "Living with schizophrenia in India: Gender perspectives." Transcultural Psychiatry 48, no. 5 (November 2011): 569–84. http://dx.doi.org/10.1177/1363461511418872.
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This study explores gender issues from a sociocultural perspective related to stigma among people suffering from schizophrenia in India. Stigma experiences were assessed by conducting semistructured interviews with 200 patients attending urban or rural psychiatry clinics. The resulting narratives were examined by thematic content analysis. Men with schizophrenia reported being unmarried, hid their illness in job applications and from others, and experienced ridicule and shame. They reported that their experience of stigma was most acute at their places of employment. Women reported experiences of stigma in relation to marriage, pregnancy, and childbirth. Both men and women revealed specific cultural myths about their illnesses and described how these had negatively affected their lives. Information gathered from this study can be useful to understand the needs of individuals who suffer from schizophrenia to improve the quality of their treatment, and plan culturally appropriate interventions to counter stigma and discrimination.
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Mkoka, Dickson Ally, and Rehema Nkingi. "Lived Experiences of Adults with Sickle Cell Disease: A Qualitative Study, Dar es Salaam, Tanzania." East African Health Research Journal 6, no. 2 (December 15, 2022): 189–95. http://dx.doi.org/10.24248/eahrj.v6i2.699.
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Background: Sickle Cell Disease (SCD) is most common genetic disorder and its prevalence in sub-Saharan Africa is increasing. Despite increased survival rates, experiences of adults living with SCD in Tanzania is not well explored. This article provides perceived causes of pain crisis, pain self- management approaches and psychosocial implication of SCD. Aim: This study aimed at exploring experiences of adults living with SCD regarding pain triggering or aggravating factors; self-management for pain; psychosocial-economical implication of SCD and coping mechanism used by individuals living with SCD Methods: A qualitative study design was chosen using in-depth interviews with adults living with SCD to explore their experience of living with SCD. Fifteen adults aged 18 years and above living with SCD were interviewed. Data were analyzed by using content analysis approach. Findings: Four categories emerged that described experiences of individuals with SCD. The four categories are; “Pain Triggering and Aggravating Factors” describing participants’ perceived factors causing pain in SCD; “Self-care remedies for the pain” referring to participants’ methods for self-management of pain; “Psychosocial-economic impact of illness” referring to participants’ experience of implication of illness on social and economic life and “Dealing and coping with illness” referring to experience of participants on management and coping strategies used to live with the illness. Conclusion: Individuals with SCD experiences several episodes of pain that affect their quality of life. Pain episode can be triggered or aggravated by various factors. Several approaches are used by individuals with SCD to self-manage the pain including taking rest, drinking plenty of water or using pain relieving medication. Care for individuals with SCD should be comprehensive and include proper management of pain, health education on home-based intervention for sickle cell pain, supportive services to deal with psychosocial implications of SCD and improving coping strategies to live with the illness.
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Haydon, Gunilla, and Pamela van der Riet. "Narrative inquiry: A relational research methodology suitable to explore narratives of health and illness." Nordic Journal of Nursing Research 37, no. 2 (October 21, 2016): 85–89. http://dx.doi.org/10.1177/2057158516675217.
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This paper proposes the need for further qualitative research to gain valuable insight into individuals’ experiences of health and illness and the suitability of narrative inquiry as a methodology to investigate these experiences. It is essential to increase qualitative knowledge of individuals’ experiences of illness in order to improve and personalise their care. Narrative inquiry aims to understand knowledge gained from the individual’s narrative of their experiences. Narrative inquiry explores experiences through the dimensions of temporality, sociality and spatiality. The aspect between these dimensions provides an exploratory structure for narratives surrounding health and illness: temporality – when did the illness begin, how will it influence the future; sociality – cultural and personal influences on views of illness; spatiality – surroundings, such as hospitals, and their influence on the health–illness perspective. Narrative inquiry not only provides a deep understanding of the investigated phenomena, it is also provides a rich vibrant narrative presentation of findings for the reader and user of research.
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Robertson, Matra. "Experiences of time: A qualitative inquiry into experiences of time as described by palliative care inpatients." Palliative and Supportive Care 13, no. 1 (November 4, 2013): 67–73. http://dx.doi.org/10.1017/s1478951513000886.
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AbstractObjectives:In palliative care, health professionals provide support and care for patients for the duration of the unknown time toward death. While the experiences of patients diagnosed with a life limiting illness in palliative care have received some scholarly attention, little research has explored these experiences as described by palliative inpatients themselves. The purpose of this article is to explore how patients describe their lived experiences of time while in a palliative inpatient facility.Methods:This study used a qualitative phenomenological method and nine inpatients were recruited. They were interviewed utilizing in-depth semi-structured interviews, which were audio taped and transcribed. These interview transcripts of their descriptions were the data sources for this inquiry. Their description is part of a broader phenomenological inquiry on the experience of living with a life limiting illness described by palliative inpatients. Data were analyzed to identify essential themes within and across cases.Results:Three essential themes were revealed: “brief time”; “waiting time,” and “transcendental horizon: future time.” These themes were not mutually exclusive and participant's experiences of time approaching death were described as a time of living toward death.Significance of results:The findings suggest that patients diagnosed with a life limiting illness have multi-dimensional experiences of time. Understanding the experiences of temporality for patients close to the gravity of death, from the patients' own words, can provide direction for patient informed interventions in clinical practice.
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Bril-Barniv, Shani, Galia S. Moran, Adi Naaman, David Roe, and Orit Karnieli-Miller. "A Qualitative Study Examining Experiences and Dilemmas in Concealment and Disclosure of People Living With Serious Mental Illness." Qualitative Health Research 27, no. 4 (October 24, 2016): 573–83. http://dx.doi.org/10.1177/1049732316673581.
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People with mental illnesses face the dilemma of whether to disclose or conceal their diagnosis, but this dilemma was scarcely researched. To gain in-depth understanding of this dilemma, we interviewed 29 individuals with mental illnesses: 16 with major depression/bipolar disorders and 13 with schizophrenia. Using a phenomenological design, we analyzed individuals’ experiences, decision-making processes, and views of gains and costs regarding concealment and disclosure of mental illness. We found that participants employed both positive and negative disclosure/concealment practices. Positive practices included enhancing personal recovery, community integration, and/or supporting others. Negative practices occurred in forced, uncontrolled situations. We also identified various influencing factors, including familial norms of sharing, accumulated experiences with disclosure, and ascribed meaning to diagnosis. Based on these findings, we deepen the understanding about decision-making processes and the consequences of disclosing or concealing mental illness. We discuss how these finding can help consumers explore potential benefits and disadvantages of mental illness disclosure/concealment occurrences.
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Bristowe, Katherine, Matthew Hodson, Bee Wee, Kathryn Almack, Katherine Johnson, Barbara A. Daveson, Jonathan Koffman, Linda McEnhill, and Richard Harding. "Recommendations to reduce inequalities for LGBT people facing advanced illness: ACCESSCare national qualitative interview study." Palliative Medicine 32, no. 1 (May 14, 2017): 23–35. http://dx.doi.org/10.1177/0269216317705102.
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Background: Lesbian, gay, bisexual and/or trans (LGBT) people have higher risk of certain life-limiting illnesses and unmet needs in advanced illness and bereavement. ACCESSCare is the first national study to examine in depth the experiences of LGBT people facing advanced illness. Aim: To explore health-care experiences of LGBT people facing advanced illness to elicit views regarding sharing identity (sexual orientation/gender history), accessing services, discrimination/exclusion and best-practice examples. Design: Semi-structured in-depth qualitative interviews analysed using thematic analysis. Setting/participants: In total, 40 LGBT people from across the United Kingdom facing advanced illness: cancer ( n = 21), non-cancer ( n = 16) and both a cancer and a non-cancer conditions ( n = 3). Results: In total, five main themes emerged: (1) person-centred care needs that may require additional/different consideration for LGBT people (including different social support structures and additional legal concerns), (2) service level or interactional (created in the consultation) barriers/stressors (including heteronormative assumptions and homophobic/transphobic behaviours), (3) invisible barriers/stressors (including the historical context of pathology/criminalisation, fears and experiences of discrimination) and (4) service level or interactional facilitators (including acknowledging and including partners in critical discussions). These all shape (5) individuals’ preferences for disclosing identity. Prior experiences of discrimination or violence, in response to disclosure, were carried into future care interactions and heightened with the frailty of advanced illness. Conclusion: Despite recent legislative change, experiences of discrimination and exclusion in health care persist for LGBT people. Ten recommendations, for health-care professionals and services/institutions, are made from the data. These are simple, low cost and offer potential gains in access to, and outcomes of, care for LGBT people.
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Scrutton, Tasia Philippa. "CAN BEING TOLD YOU'RE ILL MAKE YOU ILL? A DISCUSSION OF PSYCHIATRY, RELIGION AND OUT OF THE ORDINARY EXPERIENCES." Think 17, no. 49 (2018): 87–101. http://dx.doi.org/10.1017/s1477175618000131.
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What would you think if someone told you they heard voices when no one was there, or could sense the presence of the dead? In some historical periods and in some societies today these experiences are made sense of positively in religious or spiritual terms, but in modern western societies they tend to be regarded as symptomatic of mental illnesses such as schizophrenia. I argue that interpreting these experiences in terms of illness can negatively affect them, turning them into something pathological when they needn't necessarily be so. I also discuss wider issues regarding illness, medicine, authority, interpretation and meaning.
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Brydges, Nichola M., and Jack Reddaway. "Neuroimmunological effects of early life experiences." Brain and Neuroscience Advances 4 (January 2020): 239821282095370. http://dx.doi.org/10.1177/2398212820953706.
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Exposure to adverse experiences during development increases the risk of psychiatric illness later in life. Growing evidence suggests a role for the neuroimmune system in this relationship. There is now substantial evidence that the immune system is critical for normal brain development and behaviour, and responds to environmental perturbations experienced early in life. Severe or chronic stress results in dysregulated neuroimmune function, concomitant with abnormal brain morphology and function. Positive experiences including environmental enrichment and exercise exert the opposite effect, promoting normal brain and immune function even in the face of early life stress. The neuroimmune system may therefore provide a viable target for prevention and treatment of psychiatric illness. This review will briefly summarise the neuroimmune system in brain development and function, and review the effects of stress and positive environmental experiences during development on neuroimmune function. There are also significant sex differences in how the neuroimmune system responds to environmental experiences early in life, which we will briefly review.
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Warnes, Ann, Geraldine Strathdee, and Kamaldeep Bhui. "On learning from the patient: hearing voices." Psychiatric Bulletin 20, no. 8 (August 1996): 490–92. http://dx.doi.org/10.1192/pb.20.8.490.
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This paper presents the coping strategies developed by one patient with 18 years experience of managing her own schizophrenic illness. The interventions which evolved gave her significant control over her illness. We report her experiences and emphasise that for some patients with treatment resistant schizophrenia, the patients themselves may have expertise in managing their symptoms.
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Waldrop, Deborah P., Robert A. Milch, and Judith A. Skretny. "Understanding Family Responses to Life-Limiting Illness: In-depth Interviews with Hospice Patients and Their Family Members." Journal of Palliative Care 21, no. 2 (June 2005): 88–96. http://dx.doi.org/10.1177/082585970502100204.
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Understanding family dynamics is a key component in providing comprehensive care for persons with progressive illnesses and their caregivers. The purpose of this study was to investigate what families experience during an advancing illness and to describe their patterns of response. In-depth interviews (n=108) were conducted with families two weeks after hospice admission. Interviews were tape recorded, transcribed, and analyzed using qualitative methods. Six modes were distilled: reactive (illness generates intense responses), advocacy (vulnerability ignites assertive actions), fused (illness and decline are shared experiences), dissonant (diametrically opposed viewpoints cause struggle), resigned (decline and death are anticipated), and closed (outward responses are impassive). Three events triggered movement from one mode to another: (1) functional changes, (2) crisis events, and (3) provider communication. Providers who understand varied family reactions can ease the patient's suffering, assist relatives in providing effective care, and prepare them for the approaching death.
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Bartholomew, Theodore T. "Omunanamwengu (The Mad One): A Multiple Case Study of Individual and Familial Experiences of Madness Among the Northern Namibian Aawambo." Journal of Cross-Cultural Psychology 51, no. 7-8 (June 26, 2020): 597–615. http://dx.doi.org/10.1177/0022022120938147.
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To understand mental illness in cultural contexts, research should focus on locally informed concepts of illness and the lived experiences of such conditions. Understanding mental illness, its prevalence, and its influence on people’s lives in Namibia represents one such context where attention to the lived experience of mental illness remains understudied. The purpose of the current study was to build upon ethnographic findings about mental illness as madness ( eemwengu) among the Namibian Aawambo. To that end, a multiple case study design was used to explore the lived experience of being omunanamwengu (the mad one). Data were collected from four cases that were bound by the experience of mental illness. Within each case, the individual experiencing illness ( omunanamwengu), family members, and both omunanamwengu and family members were interviewed formally (via a semi-structured interview protocol) or informally due to participants’ preferences for not being recorded. Using Stake’s suggested approach to multiple-case study cross-case analysis, each individual case is described and cross-case themes (Development and Symptoms of Mental Illness; Marginalization and Omunanamwengu; Family Roles in the Lives of the Distressed and Eemwengu; Belief in Treatment) were identified. Findings are discussed in light of the role of beliefs in treatment as well as family involvement, the potential influence of discrimination on mental illness, and implications for practice and cross-cultural psychology.
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Chung, K. F., and M. C. Wong. "Experience of stigma among Chinese mental health patients in Hong Kong." Psychiatric Bulletin 28, no. 12 (December 2004): 451–54. http://dx.doi.org/10.1192/pb.28.12.451.
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Aims and MethodThe study was intended to rectify the lack of data on how Chinese people experience the stigma of mental illness. A questionnaire on perceived stigmatisation, experiences of rejection and ways of coping with stigma was completed by 193 persons attending a psychiatric out-patient clinic in Hong Kong.ResultsMost of the participants were aware of the stigma associated with mental illness, but experiences of rejection were relatively less frequent. Eleven per cent of the respondents indicated that they were neglected by health care professionals and 8% had been avoided by family members. The most frequently reported coping method was maintaining secrecy about the illness.Clinical ImplicationsIn China, people with mental health problems experience stigma in various degrees. However, some of the people surveyed expressed feelings of relief that others were supportive and sympathetic towards their illness. Mental health professionals should maintain optimism in helping their patients to cope with the stigma.
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Maina, Geoffrey M., Vera Caine, Judy Mill, and Randolph Wimmer. "Exploring the meaning of living with HIV as a chronic illness in Kenya: A narrative inquiry." Communication and Medicine 13, no. 2 (May 4, 2017): 215–26. http://dx.doi.org/10.1558/cam.27949.
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Since the introduction of antiretroviral medications, HIV has been regarded as a chronic illness. However, people living with HIV continue to experience social consequences of HIV infection such as stigma, discrimination, violence, and other human rights violations. In this paper, we focus on the experiences of Atoti, a person living with HIV in Kenya. We argue that HIV remains a biographically disruptive and exceptional illness that is complicated by its invisibility and unpredictable trajectory. Based on Atoti’s experiences, we argue that Bury’s (1982) concept of biographical disruption, used to explain the social processes of a person suffering a chronic illness, does not fully capture the complexity of experiencing living with HIV. Focusing on life as a whole, rather than on the disease response and process as a biographical disruption, allows for a deeper appreciation of HIV’s complexity as a medical illness with major social ramifications.