Journal articles: 'Illness experience'

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Price, Bob. "Illness careers: the chronic illness experience." Journal of Advanced Nursing 24, no. 2 (August 1996): 275–79. http://dx.doi.org/10.1046/j.1365-2648.1996.02047.x.

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Langer, M. "The illness experience." Canadian Medical Association Journal 186, no. 2 (December 16, 2013): 139. http://dx.doi.org/10.1503/cmaj.131304.

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Wondrak, Rob. "The illness experience." Nurse Education Today 12, no. 3 (June 1992): 235. http://dx.doi.org/10.1016/0260-6917(92)90069-z.

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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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Warren, Carol A. A., Ray Fitzpatrick, John Hinton, Stanton Newman, Graham Scrambler, and James Thompson. "The Experience of Illness." Contemporary Sociology 16, no. 2 (March 1987): 237. http://dx.doi.org/10.2307/2070737.

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Pearson, Alan. "Understanding the illness experience." International Journal of Nursing Practice 12, no. 4 (August 2006): 177. http://dx.doi.org/10.1111/j.1440-172x.2006.00577.x.

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Henkerill, Fred O. "The Experience of Illness." Psychosomatics 26, no. 12 (December 1985): 952–53. http://dx.doi.org/10.1016/s0033-3182(85)72765-x.

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Carel, Havi, Ian James Kidd, and Richard Pettigrew. "Illness as transformative experience." Lancet 388, no. 10050 (September 2016): 1152–53. http://dx.doi.org/10.1016/s0140-6736(16)31606-3.

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Conrad, Peter. "The experience of illness." Social Science & Medicine 24, no. 8 (January 1987): 700–701. http://dx.doi.org/10.1016/0277-9536(87)90320-0.

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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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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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Hamzah, Imam Faisal, and Subandi Subandi. "THE ILLNESS EXPERIENCE IN HYPERTENSION PATIENTS WITH LOW SOCIOECONOMIC STATUS." Jurnal Psikologi 19, no. 4 (November 22, 2020): 357–72. http://dx.doi.org/10.14710/jp.19.4.357-372.

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Hypertension is one type of disease that is usually experienced by adults, where arteries have excessive pressure, which is above 140 mm Hg for systolic and diastolic 90 mm Hg. Hypertension is not only a physical experience, but also needs to be understood as a psychological and social experience. Health is a social problem because it is related to how a person finances his health and access appropriate health facilities. The purpose of this study was to obtain psychosocial dynamics in the experience of hypertension in patients with low socioeconomic status. This study used a qualitative method with an Interpretative Phenomenological Analysis (IPA) approach through semi-structured interviews. Three participants involved were female, aged 30 to 45 years, and had more than one year suffered from hypertension. This study found six superordinate themes that focused on perceptions of causes, perceptions of hypertension, unpleasant feeling, social resources, improvement efforts, and health development.

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Maitra, Amrapali, and Abraham Verghese. "Diagnosis and the Illness Experience." JAMA 326, no. 19 (November 16, 2021): 1907. http://dx.doi.org/10.1001/jama.2021.19496.

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Hughes, Charles C. "Introduction: The Experience of Illness." Qualitative Health Research 2, no. 2 (May 1992): 123–26. http://dx.doi.org/10.1177/104973239200200201.

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Suzuki, Akihito. "Illness Experience and Therapeutic Choice." Social Science History 32, no. 4 (2008): 515–34. http://dx.doi.org/10.1017/s0145553200010816.

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This article presents a history of medicine from the patient's viewpoint. Using archival materials from the Takinogawa Health Survey, conducted in Tokyo in 1938, the article examines differences in self-reported morbidity according to patients' ages and genders. It also examines differences in their choices of treatment according to income. The article proposes to understand these differences with reference to sociocultural, biological, and economic factors.

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Crossley, David. "Religious Experience Within Mental Illness." British Journal of Psychiatry 166, no. 3 (March 1995): 284–86. http://dx.doi.org/10.1192/bjp.166.3.284.

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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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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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Duwe, Elise AG, Breanna M. Holloway, Jessie Chin, and Daniel G. Morrow. "Illness experience and illness representation among older adults with hypertension." Health Education Journal 77, no. 4 (February 5, 2018): 412–29. http://dx.doi.org/10.1177/0017896917751553.

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Objective: This study investigated how older adults’ representations of hypertension relate to their illness experience (years of illness), health literacy and self-rated health. Design: Correlational study. Setting: Community-based older adults diagnosed with hypertension. Method: We measured health literacy (Short Test of Functional Health Literacy in Adults [S-TOFHLA]), hypertension knowledge (Hypertension Knowledge Questionnaire), self-rated health and illness representation (IR by Brief Illness Perception Questionnaire [BIPQ]). Results: Confirmatory factor analysis divided IR into cognitive (chronicity, understanding and control) and emotional (more concern, higher impact of illness on affect) dimensions. Ordinary least-squares regression analyses demonstrated that more years of education, more hypertension knowledge, longer duration of hypertension and natural cause beliefs predicted cognitive IR, while fewer years of education, less hypertension knowledge and behavioural cause beliefs (e.g. diet and exercise) predicted emotional IR. More years of education, emotional IR and belief in natural versus psychosocial causes of hypertension were associated with better self-rated health. Conclusion: More years of illness provides older adults with the opportunity to develop an understanding of their condition. More years of education is associated with a lower emotional impact of illness, perhaps through the development of coping strategies. Emotional IR is more important than cognitive IR in predicting self-rated health. Intervening to promote better health outcomes and self-care should take place not only through health education but also through social support and health care access.

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Evers, Kaylene J. "Chronic Illness: from experience to policy." Social Science & Medicine 47, no. 1 (July 1998): 149–50. http://dx.doi.org/10.1016/s0277-9536(97)10091-0.

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Kralik, Debbie, Antonia van Loon, and Kate Visentin. "Resilience in the chronic illness experience." Educational Action Research 14, no. 2 (June 2006): 187–201. http://dx.doi.org/10.1080/09650790600718035.

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Akogun, Oladele B., Minnakur A. Gundiri, Jacqueline A. Badaki, Sani Y. Njobdi, Adedoyin O. Adesina, and Olumide T. Ogundahunsi. "Febrile illness experience among Nigerian nomads." International Journal for Equity in Health 11, no. 1 (2012): 5. http://dx.doi.org/10.1186/1475-9276-11-5.

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Leventhal, Howard. "British Literature on the Illness Experience." Contemporary Psychology: A Journal of Reviews 31, no. 12 (December 1986): 962–63. http://dx.doi.org/10.1037/024326.

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Greaves, D. "Chronic Illness: From Experience to Policy." Journal of Medical Ethics 22, no. 4 (August 1, 1996): 249–50. http://dx.doi.org/10.1136/jme.22.4.249-a.

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Taylor, Carol. "What the Experience of Illness Teaches." Narrative Inquiry in Bioethics 3, no. 1 (2013): 45–49. http://dx.doi.org/10.1353/nib.2013.0018.

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Goodwill, C. J. "Chronic Illness: From Experience to Policy." BMJ 312, no. 7030 (March 2, 1996): 587. http://dx.doi.org/10.1136/bmj.312.7030.587.

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Kralik, Debbie, and Antonia M. van Loon. "Editorial: Transition and chronic illness experience." Journal of Nursing and Healthcare of Chronic Illness 1, no. 2 (June 2009): 113–15. http://dx.doi.org/10.1111/j.1752-9824.2009.01021.x.

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Melia, Kath. "The illness experience—Dimensions of suffering." Social Science & Medicine 35, no. 3 (August 1992): 358. http://dx.doi.org/10.1016/0277-9536(92)90033-m.

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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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Clarke, Sarah T., Barbara M. Murphy, Robert Hester, and Alun C. Jackson. "How does illness uncertainty impact recovery among patients with cardiac conditions?" British Journal of Cardiac Nursing 17, no. 10 (October 2, 2022): 1–8. http://dx.doi.org/10.12968/bjca.2022.0102.

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Illness uncertainty is a common experience across many chronic and acute conditions. Patients with cardiac conditions may experience uncertainty in relation to various aspects of their illness, including its causes, management and prognosis, as well as uncertainty about the future more broadly. There are several contributors to illness uncertainty among these patients, many of which are related to patient factors, such as previous expectations of the illness, sensitivity to physical symptoms and intolerance of uncertainty. Service factors, such as inadequate provision of information, can also contribute to illness uncertainty. Heightened illness uncertainty may result in negative psychological, cognitive and behavioural outcomes. Fears related to the future, specifically fear of disease progression and recurrent events, play an important role in how illness uncertainty is experienced by patients with cardiac conditions. This article presents an overview of illness uncertainty and its impact on cardiac recovery.

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Creighton, F. J., C. E. Hyde, and B. Farragher. "Douglas House Seven Years' Experience of a Community Hostel Ward." British Journal of Psychiatry 159, no. 4 (October 1991): 500–504. http://dx.doi.org/10.1192/bjp.159.4.500.

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Of 24 residents of a ten-bed, community-based hostel ward suffering chronic psychiatric illness, nine have been resettled in the community, with four more expected to follow them. Five residents have made Douglas House their home but another six have manifested behavioural disturbance necessitating return to hospital wards. We found community discharge to be associated with illnesses having good prognostic features, while organic illness militated against such placement. Indicators of a prior history of behavioural disturbance seem to predict difficulties in managing a patient in this environment.

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Bahtiar, Bahtiar, Sahar Sahar, Junaiti Junaiti, Wiarsih Wiarsih, and Wiwin Wiwin. "A "Not able to live anymore": Reaction of the grieving process of the elderly dealing with chronic disease." International Journal of Nursing and Health Services (IJNHS) 1, no. 1 (October 26, 2018): 24–34. http://dx.doi.org/10.35654/ijnhs.v1i1.6.

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Background: Psychological problems have an impact on the elderly with chronic diseases thus affecting health status. Objective: The purpose of this study was to identify the response of the elderly in dealing with chronic diseases. Methods: This study uses a descriptive phenomenology method. The population in this study were elderly who lived in Makassar City and had a chronic disease. This study illustrates the experience of 13 older adults aged 60-78 years who experience chronic disease. Results: A response felt by the elderly with chronic diseases for years, a series of grieving processes. The grieving process felt by the elderly is a psychological reaction from the suffering experienced due to symptoms and complaints of chronic illness. The series of grieving process reactions that are displayed are denial, anger, bargaining, despair, and resignation. Conclusion: The old experience with denial, anger, bargaining during chronic illness is normal. Also, the elderly could experience a desperate reaction during chronic illness due to the prolonged treatment process, and resignation reaction was a sign that the elderly were aware of the disease condition which they experienced. Recommendation: nursing intervention is needed related to grieving issues that include aspects of self, physical, social and spiritual for elderly with chronic illness. Keyword: grieving, chronic illness, elderly, family

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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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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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Frydrych, Jan. "Chorowanie na łuszczycę i atopowe zapalenie skóry jako podróż w nieznane." Przegląd Humanistyczny 61 (December 15, 2017): 0. http://dx.doi.org/10.5604/01.3001.0010.7401.

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This article has been based on the MA thesis “Suffering from Psoriasis and Atopic Dermatitis in the Context of Medical Anthropology”. I discuss typology of narrative about Arthur Frank’s illness. With its aid and a metaphor of illness as a journey he used, I describe the experience of suffering from two chronic illnesses – psoriasis and atopic dermatitis. In this way, I attempt to present complexity of the experience of suffering from both illnesses, their multi-level impact on life of the ill and the ways they work out to cope with them.

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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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Boydell, Katherine M., Anne Honey, Helen Glover, Katherine Gill, Barbara Tooth, Francesca Coniglio, Monique Hines, Leonie Dunn, and Justin Newton Scanlan. "Making Lived-Experience Research Accessible: A Design Thinking Approach to Co-Creating Knowledge Translation Resources Based on Evidence." International Journal of Environmental Research and Public Health 18, no. 17 (September 2, 2021): 9250. http://dx.doi.org/10.3390/ijerph18179250.

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Mental health lived-experience research illuminates the perspectives and experiences of people who live with mental illness. However, little is known about how useful people with lived experience of mental illness/distress might find lived-experience research, nor what the best formats are to bring it to their attention. This paper describes the STELLER study (Supporting the Translation into Everyday Life of Lived-Experience Research), which explores the translation of lived-experience research in the lives of people living with mental illness. Our aim was to use a design thinking approach to develop a range of user-friendly formats to disseminate lived-experience research. A staged design thinking approach was used to develop a translation strategy for lived-experience research. We explored empathy via consumer consultation to understand their perspectives on lived-experience research, refined the design aim, research questions and generated ideas with consumers and mental health professionals, identified the evidence based on lived experience-authored journal articles, worked with design students and peer workers to create a suite of resources and developed prototypes tailored to individual settings and clients. Participatory design thinking strategies are essential to identify the best ways to translate evidence-based lived-experience research via accessible, lay-friendly resources targeted to individuals impacted by mental illness. This study is the first to investigate the feasibility and usefulness of bringing the findings of lived-experience research to individuals impacted by mental illness/distress. It provides evidence about a potentially important source of information that can be used to facilitate their recovery.

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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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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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Houman, Katie M., and Janice C. Stapley. "The College Experience for Students With Chronic Illness: Implications for Academic Advising." NACADA Journal 33, no. 1 (June 1, 2013): 61–70. http://dx.doi.org/10.12930/nacada-13-227.

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A purposive sample (2 males, 3 females) of students (aged 18–29 years) with chronic illness completed standardized measures and a semi-structured interview. Content analysis of the interview data revealed two themes: stress exacerbating symptoms of illness and a desire for a support group on campus. Viewed through the theory of emerging adulthood, participants' social support data suggest that some college students with chronic illness are challenged by the developmental tasks of this life stage due to their health issues. Male students with chronic illnesses may be at a higher risk than females for college adjustment problems. The growing population of those with a diagnosis can benefit from developmental advising that includes validation of their particular challenges and appropriate intervention.

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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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Kazlauskaite, Vaida, and Stephen T. Fife. "Adolescent Experience With Parental Cancer and Involvement With Medical Professionals: A Heuristic Phenomenological Inquiry." Journal of Adolescent Research 36, no. 4 (January 9, 2021): 371–97. http://dx.doi.org/10.1177/0743558420985446.

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Experiencing the death of a loved one can be a difficult occurrence. Adolescents, in particular, experience death in a unique way. Yet there is relatively little research on adolescents’ experience with parental death and their involvement in the medical setting during a parent’s terminal illness. This qualitative study utilized heuristic inquiry, a type of phenomenological research, to investigate adolescents’ involvement in the hospital setting during parental terminal illness. Qualitative analysis of participants’ experiences resulted in two primary categories associated with adolescents’ involvement with medical professionals during parental illness: factors influencing hospital involvement and experience with health care professionals. The findings have implications for medical and mental health professionals who work with adolescent family members of terminally ill patients.

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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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Serenati, Nicholas Quin. "The Structure of Illness Space: Video and Illness Experience as Spiritual Practice." International Journal of Religion and Spirituality in Society 11, no. 1 (2020): 13–27. http://dx.doi.org/10.18848/2154-8633/cgp/v11i01/13-27.

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Thomas, Stephen J., Liane Agulto, Kim Hendrickx, Martin Erpicum, Kay M. Tomashek, M. Cristina Cassetti, Catherine Laughlin, et al. "Dengue illness index—A tool to characterize the subjective dengue illness experience." PLOS Neglected Tropical Diseases 12, no. 10 (October 4, 2018): e0006593. http://dx.doi.org/10.1371/journal.pntd.0006593.

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Paterson, Janis, Rona Moss-morris, and Sarnia J. Butler. "The effect of illness experience and demographic factors on children's illness representations." Psychology & Health 14, no. 1 (January 1999): 117–29. http://dx.doi.org/10.1080/08870449908407318.

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Gibson, B. J., and O. V. Boiko. "The experience of health and illness: Polycontextural meaning and accounts of illness." Social Theory & Health 10, no. 2 (December 7, 2011): 156–87. http://dx.doi.org/10.1057/sth.2011.22.

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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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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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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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Journal articles on the topic 'Illness experience'

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