Relevant bibliographies by topics / Illness experience

Contents

  1. Journal articles
  2. Dissertations / Theses
  3. Books
  4. Book chapters
  5. Conference papers
  6. Reports

Academic literature on the topic 'Illness experience'

Author: Grafiati
Published: 4 June 2021
Last updated: 21 February 2023

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Journal articles on the topic "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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Dissertations / Theses on the topic "Illness experience"

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Gwyn, Richard. "The voicing of illness : narrative and metaphor in accounts of illness experience." Thesis, Cardiff University, 1996. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.321364.

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Wasserkrug, Sue 1960. "The experience of asthma: An illness ethnography." Thesis, The University of Arizona, 1988. http://hdl.handle.net/10150/291854.

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Thirty patients at a Tucson respiratory clinic were questioned to elicit data to yield an ethnography of asthma. The methodology involved one structured, open-ended interview per patient. The patients ranged in age from 24 to 82; a range of demographic, sociocultural, and medical variables were represented. Two themes, control and limitation, surfaced as the key issues in the construction of meaning attached to the experience of asthma. Asthmatics feel a loss of control over their lives, which they see as being shaped--to some degree--by the limitations that asthma incurs. The sensation of losing control causes fear or panic, a common emotion among asthmatics, according to informants. The need to take medication on a daily basis is seen as an important symbol in the development of patients' conceptions of their illnesses. The influence of dominant cultural values on the expression of asthma is discussed, and an understanding of the effect of asthma on the daily lives of Americans is offered.
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Chircop, Andrea Maria Justine. "The experience of women living with environmental illness." Thesis, National Library of Canada = Bibliothèque nationale du Canada, 1997. http://www.collectionscanada.ca/obj/s4/f2/dsk3/ftp04/mq24816.pdf.

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Sinnott, Patricia A. "Pharmacists' illness experience and the pharmacist-patient relationship." Thesis, National Library of Canada = Bibliothèque nationale du Canada, 1997. http://www.collectionscanada.ca/obj/s4/f2/dsk2/ftp01/MQ29338.pdf.

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MacNeil, Amanda Marie. "Understanding the Illness Experience of Veterans With Dementia." Cleveland State University / OhioLINK, 2021. http://rave.ohiolink.edu/etdc/view?acc_num=csu1619788545141776.

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Dunn, Penelope Claire. "Women’s perceptions of their illness experience with myocardial infarction." Thesis, University of British Columbia, 1985. http://hdl.handle.net/2429/24414.

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This study was designed to elicit women's perceptions of their illness experience with myocardial infarction for the purpose of exploring and describing the nature and meaning of this illness experience and its impact on everyday life. The phenomenological method, a type of qualitative research, was used to direct the study. The data were compiled through a series of semi-structured intensive interviews with eight women. The women were 36 to 71 years of age. Six of the women were married and living with their husbands. The women had been at home following discharge from hospital for 2 to 14 weeks. Data collection and data analysis proceeded simultaneously and data collection ceased once consistent themes were identified and validated and the data collected were sufficiently rich and in-depth. Women explain their illness experience with myocardial infarction as a loss phenomenon and the central and dominant loss within the heart attack experience for women is loss of predictability. Women's need for information following myocardial infarction is not met and lack of energy is a prominent feature in everyday life after a heart attack. Traditional sex role socialization sets the stage for potential problems in women's cardiac rehabilitation, especially in relation to support and role enactment. Physical rehabilitation is not a selected strategy to gain control over their loss experience for women with myocardial infarction. The findings and conclusions of this study suggest a number of implications for nursing practice. There is clear direction for family-centered nursing care in the rehabilitation of women with myocardial infarction to address potential problems in relation to support and role enactment. This study reinforces the value of using the concepts of loss and grief to care for patients with myocardial infarction. Also, this study indicates that, in planning nursing care for women with myocardial infarction, nurses should focus on Interventions to increase support, to meet patient and family educational needs, and to help women to anticipate normal physical and psychological responses to myocardial infarction. This study also has specific implications for the development of structured cardiac rehabilitation programmes addressing the special needs of women. In relation to nursing education, nurses must be prepared to assess, teach, and counsel patients with myocardial infarction and their families. Most importantly, this study directs nursing educators to provide course work in women's health issues to sensitize nurses to this field of study and to equip nurses with the understanding necessary to facilitate changes in women's health care. Implications for future research include further exploration of information needs, support, and strategies for control in relation to women with myocardial infarction.
Applied Science, Faculty of
Nursing, School of
Graduate
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Börjesson, Karin. "Mental illness : relation to childbirth and experience of motherhood /." Stockholm, 2005. http://diss.kib.ki.se/2005/91-7140-521-6/.

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Docherty, Deborah. "The narrative approach to understanding the chronic illness experience /." Thesis, McGill University, 2000. http://digitool.Library.McGill.CA:80/R/?func=dbin-jump-full&object_id=33459.

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This small exploratory study considers the use of the narrative approach in eliciting and understanding illness stories. The four participants, (two male and two female) range in age from 29 years to 74 years. They live with a variety of chronic illnesses (heart disease, Multiple Sclerosis, and Pick's disease). Narrative analysis of the four semi-structured transcribed interviews revealed four dominant themes: the emotional reaction to diagnosis; the role of stress in aggravating and coping with chronic illness; a view of death; the meaning attributed to illness.
A postmodern perspective is employed to explicate the social construction of the notion of chronic illness. A critique of the medical discourse regarding chronic health challenges is offered.
This study invites social workers to consider their position of power and privilege as they learn new ways of listening to illness narratives.
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Kendall, Marilyn. "Lost in space : service users' experience of mental illness." Thesis, Durham University, 2000. http://etheses.dur.ac.uk/1524/.

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Rashid, M. "Experience of diagnostics and medical treatment of illness Dieulafoy." Thesis, Sumy State University, 2014. http://essuir.sumdu.edu.ua/handle/123456789/36587.

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A syndrome Dieulafoy from literary data is the massive arterial bleeding caused by the break of aneurism of small artery under mucous layer of stomach wall. The clinical picture of this syndrome are not practically described. The choice of method of medical treatment remains a difficult problem. Taking into account all afore-mentioned, study of clinical manifestation and possibilities of endoscopic investigation in diagnostics of this disease allows to lower frequency of unknown sources of bleeding and improve his diagnostics. All afore-mentioned is determined by actuality of select theme. When you are citing the document, use the following link http://essuir.sumdu.edu.ua/handle/123456789/36587
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Books on the topic "Illness experience"

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Fitzpatrick, Ray, John Hinton, Stanton Newman, Graham Scambler, and James Thompson. The Experience of Illness. London: Routledge, 2022. http://dx.doi.org/10.4324/9781003283966.

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1943-, Toombs S. Kay, Barnard David 1948-, and Carson Ronald A. 1940-, eds. Chronic illness: From experience to policy. Bloomington: Indiana University Press, 1995.

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M, Morse Janice, and Johnson Joy L, eds. The Illness experience: Dimensions of suffering. Newbury Park, Calif: Sage Publications, 1991.

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Sinnott, Patricia A. Pharmacists' illness experience and the pharmacist-patient relationship. Ottawa: National Library of Canada = Bibliothèque nationale du Canada, 1999.

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Lives worth living: Women's experience of chronic illness. Hammersmith, London: HarperCollins, 1996.

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Spaniol, LeRoy J. The experience of recovery. Boston, Mass: Center for Psychiatric Rehabilitation, 1994.

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Irena, Madjar, and Walton Jo Ann, eds. Nursing and the experience of illness: Phenomenology in practice. London: Routledge, 1999.

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Macdonald, Gail. Making of an illness: My experience with multiple personality disorder. Sudbury, Ont: Laurentian University Press, 1999.

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The night-side: Chronic fatigue syndrome and the illness experience. Brownsville, OR: Story Line Press, 1996.

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Sufferers & healers: The experience of illness in seventeenth-century England. London: Routledge & Kegan Paul, 1987.

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Book chapters on the topic "Illness experience"

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Holmberg, Christine, and Martina Breuning. "Personal Experience of Illness." In The SAGE Handbook of Social Studies in Health and Medicine, 143–61. 1 Oliver's Yard, 55 City Road London EC1Y 1SP: SAGE Publications Ltd, 2022. http://dx.doi.org/10.4135/9781529714357.n8.

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Hinton, John. "Coping with terminal illness." In The Experience of Illness, 227–45. London: Routledge, 2022. http://dx.doi.org/10.4324/9781003283966-11.

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Fitzpatrick, Ray. "Lay concepts of illness." In The Experience of Illness, 11–31. London: Routledge, 2022. http://dx.doi.org/10.4324/9781003283966-2.

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Kirmayer, Laurence. "Somatization and the Social Construction of Illness Experience." In Illness Behavior, 111–33. Boston, MA: Springer US, 1986. http://dx.doi.org/10.1007/978-1-4684-5257-0_7.

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Fitzpatrick, Ray, John Hinton, Stanton Newman, Graham Scambler, James Thompson, and Ray Fitzpatrick. "Introduction." In The Experience of Illness, 1–8. London: Routledge, 2022. http://dx.doi.org/10.4324/9781003283966-1.

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Fitzpatrick, Ray, and Graham Scambler. "Social class, ethnicity, and illness." In The Experience of Illness, 54–84. London: Routledge, 2022. http://dx.doi.org/10.4324/9781003283966-4.

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Newman, Stanton. "The psychological consequences of cerebrovascular accident and head injury." In The Experience of Illness, 179–202. London: Routledge, 2022. http://dx.doi.org/10.4324/9781003283966-9.

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Thompson, James. "Communicating with patients." In The Experience of Illness, 87–108. London: Routledge, 2022. http://dx.doi.org/10.4324/9781003283966-5.

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Scambler, Graham, and Annette Scambler. "The illness iceberg and aspects of consulting behaviour." In The Experience of Illness, 32–53. London: Routledge, 2022. http://dx.doi.org/10.4324/9781003283966-3.

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Scambler, Graham. "Perceiving and coping with stigmatizing illness." In The Experience of Illness, 203–26. London: Routledge, 2022. http://dx.doi.org/10.4324/9781003283966-10.

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Conference papers on the topic "Illness experience"

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Janicki, Sylvia, Matt Ziegler, and Jennifer Mankoff. "Navigating Illness, Finding Place: Enhancing the Experience of Place for People Living with Chronic Illness." In COMPASS '21: ACM SIGCAS Conference on Computing and Sustainable Societies. New York, NY, USA: ACM, 2021. http://dx.doi.org/10.1145/3460112.3471955.

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Honary, Mahsa, Roisin McNaney, and Fiona Lobban. "Designing video stories around the lived experience of severe mental illness." In NordiCHI'18: Nordic Conference on Human-Computer Interaction. New York, NY, USA: ACM, 2018. http://dx.doi.org/10.1145/3240167.3240188.

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Carreon, Richie Paul, Julie-Ann Hayes, Donal Deehan, and Conan Leavey. "F26 How narrative methods can illuminate the Huntington’s disease illness experience." In EHDN 2022 Plenary Meeting, Bologna, Italy, Abstracts. BMJ Publishing Group Ltd, 2022. http://dx.doi.org/10.1136/jnnp-2022-ehdn.117.

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Wright, Lorraine M. "Spirituality, Illness Beliefs and Illness Suffering: Clinical Ideas for Loving and Healing Conversations." In 7th International Conference on Spirituality and Psychology. Tomorrow People Organization, 2022. http://dx.doi.org/10.52987/icsp.2022.010.

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ABSTRACT Health care has become influenced by societal beliefs that overly values happiness and is unable to acknowledge and witness illness suffering. This has led our language with patients and families to change from inquiring and empathizing about suffering to adopting more upbeat language like ‘coping’, ‘adapting’, and ‘adjusting’. Even harsher expectations of dealing with illness suffering such as “it is what it is”; and “you need to accept your illness” have crept into our conversations when caring for patients/families. Language can inadvertently trigger spiritual suffering. Language changes have been coupled with unhelpful interventions in our caring of patients/ families. This change in our professional language does not reflect our patients/families experience with illness suffering and particularly their spiritual suffering. It also interferes with potential healing conversations. This presentation will encourage us to reflect and consider (re)embracing conversations of illness suffering with our patients/families that will open space to spiritual healing. From research and clinical practice, it has been determined that when suffering is softened, spiritual healing can most often occur. Healing conversations need to include: illness suffering being acknowledged, social support is available, constraining beliefs are challenged; being in the present moment is encouraged; offering curious compassion and hope. Specific relational practices will be suggested that enable patients/families to move from a place of illness suffering to spiritual healing. Specifically, love needs to be the foundation of all therapeutic conversations with individuals, couples, and families in our care. Keywords: Spirituality, healing conversations, illness suffering, illness beliefs
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Rosenbloom, Craig, Carmody Sean, Irfan Ahmed, Beasley Ian, and Cowie Charlotte. "325 Concussion knowledge and experience amongst football referees in England." In IOC World Conference on Prevention of Injury & Illness in Sport 2021. BMJ Publishing Group Ltd and British Association of Sport and Exercise Medicine, 2021. http://dx.doi.org/10.1136/bjsports-2021-ioc.297.

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Zamarron Sanz, Carlos, Carlos Rabade Castedo, Romina Abelleira París, and Marcelino Agis Villaverde. "Lexicometric Analysis Applied for Narrative Illness Experience of Obstructive Sleep Apnea Patients." In ERS International Congress 2019 abstracts. European Respiratory Society, 2019. http://dx.doi.org/10.1183/13993003.congress-2019.pa828.

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Ho, Chi-chu. "THE AWAKENING AND TRANSFORMATION OF SENSATION IN PU SONGLING’S ILLNESS POETRY." In 9th International Conference ISSUES OF FAR EASTERN LITERATURES. St. Petersburg State University, 2021. http://dx.doi.org/10.21638/11701/9785288062049.08.

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This article takes Pu Songling’s illness poetry as research subject to dig out his illness feeling about the five perceptions of the eyes, ears, tongue, and body. From deeply reviewing his four sensations in his poems, we have found the transformation of his life from sadness to glee. Due to the disease of his legs around his forty, he had spent much time lying down on the bed but he had strong feelings of the seasonal changes through his vision, hearing and touch to create a cold and lonely world around himself. After his sixty years old, the illness of his teeth had brought more severe transformation of the feeling of taste and touch. Finally, Pu Songling had accepted all of these sensations and lived with the painful feelings. The plentiful experience of feeling of illness and the fading desire for imperial examination had made huge transformation of Pu Songling’s sensations. The author would review these sensations item by item and through the real characteristic of describing the illness feelings in his poems to analyze deeply the emotional connotation of Pu Songling.
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Shadgan, Babak, Loukas Konstantinou, and Szabolcs Molnar. "190 Referees can prevent injuries in wrestling; an experience from the 2018 youth olympic games." In IOC World Conference on Prevention of Injury & Illness in Sport 2021. BMJ Publishing Group Ltd and British Association of Sport and Exercise Medicine, 2021. http://dx.doi.org/10.1136/bjsports-2021-ioc.175.

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Popescu, Mihail. "Early illness detection in elderly using sensor networks: A review of the TigerPlace experience." In 2015 E-Health and Bioengineering Conference (EHB). IEEE, 2015. http://dx.doi.org/10.1109/ehb.2015.7391386.

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Patel, Dilisha, Sachin Pendse, Munmun De Choudhury, Sarah Dsane, Kaylee Payne Kruzan, Neha Kumar, Aneesha Singh, and Mark Warner. "Information-Seeking, Finding Identity: Exploring the Role of Online Health Information in Illness Experience." In CSCW '22: Computer Supported Cooperative Work and Social Computing. New York, NY, USA: ACM, 2022. http://dx.doi.org/10.1145/3500868.3560483.

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Reports on the topic "Illness experience"

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Brekke, John, Erin Kelly, Lei Duana, Heather Cohena, Holly Kigera, and Laura Pancake. Can People Who Have Experience with Serious Mental Illness Help Peers Manage Their Health Care? Patient-Centered Outcomes Research Institute (PCORI), April 2019. http://dx.doi.org/10.25302/4.2019.ad.13046650.

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Xin, Wu, and Xue Tao. The efficacy and safety of neuromodulation in refractory epilepsy: a systematic review and network meta-analysis. INPLASY - International Platform of Registered Systematic Review and Meta-analysis Protocols, April 2022. http://dx.doi.org/10.37766/inplasy2022.4.0042.

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Review question / Objective: To assess the efficacy and safety of different neuromodulation applied to the refractory epilepsy and provide a better choice for clinical practice. Condition being studied: Epilepsy is a frequent neurologic illness defined by bursts of hypersynchronized neural network activity that afflict about 1% of the global population. Unfortunately, roughly 30% of people with drug-resistant epilepsy (DRE) continue to experience seizures despite three anti-seizure drugs. In most cases, resective surgery, as the first-line treatment for DRE, is considered a curative therapy for achieving long-term seizure-free status, but about half of patients are not candidates for surgery due to a variety of factors such as multiple/diffuse/widespread seizure foci, epileptic foci arising from eloquent, primary generalized epilepsy, or patients unwilling to undergo surgery. Neuromodulation, albeit palliative, is an important alternative treatment for these individuals to prevent or decrease ictal episodes, which can affect the nervous system in a variety of ways.
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Ly, Lena, Jennifer Philip, Peter Hudson, and Natasha Smallwood. Singing for people with advance chronic respiratory diseases: a qualitative meta-synthesis. INPLASY - International Platform of Registered Systematic Review and Meta-analysis Protocols, August 2022. http://dx.doi.org/10.37766/inplasy2022.8.0017.

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Review question / Objective: This study undertook a meta-synthesis of qualitative data with the aim of collating, synthesizing, and evaluating the current evidence regarding the experiences of singing for people with advanced chronic respiratory disease. Condition being studied: Advanced respiratory illnesses are disorders that impact the airways and other structures of the lung. People with lung cancer, chronic obstructive pulmonary disease (COPD) and interstitial lung disease (ILD) frequently experience progressive, frightening breathlessness, cough and fatigue, which affect their quality of life. Furthermore, people with advanced chronic respiratory disease (CRD) and their carers experience a high prevalence of loneliness and uncertainty, especially if breathlessness is felt to herald death and thus, require both psychological and practical supportive care to cope with their symptoms.
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Swannack, Robyn, Alys Young, and Claudine Storbeck. A scoping review of deaf sign language users’ perceptions and experiences of well-being in South Africa. INPLASY - International Platform of Registered Systematic Review and Meta-analysis Protocols, November 2022. http://dx.doi.org/10.37766/inplasy2022.11.0082.

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Background: This scoping review concerns deaf adult sign language users from any country (e.g. users of South African Sign Language (SASL), British Sign Language (BSL), American Sign Language (ASL) and so forth). It concerns well-being understood to include subjective well-being and following the WHO’s (2001) definition of well-being as “mental health as a state of well-being in which every individual realises his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully and is able to make a contribution to his or her community.” Well-being has three components (Steptoe, Deaton, and Stone, 2015; Stewart-Brown, Tennant, Tennant, Platt, Parkinson and Weich, 2009): (i) Live evaluation, also referred to life satisfaction, which concerns an individual’s evaluation of their life and their satisfaction with its quality and how good they feel about it; (ii) hedonic well-being which refers to everyday feelings or moods and focuses on affective components (feeling happy); (iii) eudaimonic well-being, which emphasises action, agency and self-actualisation (e.g. sense of control, personal growth, feelings of purpose and belonging) that includes judgments about the meaning of one’s life. Well-being is not defined as the absence of mental illness but rather as a positive state of flourishing that encompasses these three components. The review is not concerned with evidence concerning mental illness or psychiatric conditions amongst deaf signers. A specific concern is deaf sign language users’ perceptions and experiences of well-being.
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Dy, Sydney M., Julie M. Waldfogel, Danetta H. Sloan, Valerie Cotter, Susan Hannum, JaAlah-Ai Heughan, Linda Chyr, et al. Integrating Palliative Care in Ambulatory Care of Noncancer Serious Chronic Illness: A Systematic Review. Agency for Healthcare Research and Quality (AHRQ), February 2020. http://dx.doi.org/10.23970/ahrqepccer237.

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Objectives. To evaluate availability, effectiveness, and implementation of interventions for integrating palliative care into ambulatory care for U.S.-based adults with serious life-threatening chronic illness or conditions other than cancer and their caregivers We evaluated interventions addressing identification of patients, patient and caregiver education, shared decision-making tools, clinician education, and models of care. Data sources. We searched key U.S. national websites (March 2020) and PubMed®, CINAHL®, and the Cochrane Central Register of Controlled Trials (through May 2020). We also engaged Key Informants. Review methods. We completed a mixed-methods review; we sought, synthesized, and integrated Web resources; quantitative, qualitative and mixed-methods studies; and input from patient/caregiver and clinician/stakeholder Key Informants. Two reviewers screened websites and search results, abstracted data, assessed risk of bias or study quality, and graded strength of evidence (SOE) for key outcomes: health-related quality of life, patient overall symptom burden, patient depressive symptom scores, patient and caregiver satisfaction, and advance directive documentation. We performed meta-analyses when appropriate. Results. We included 46 Web resources, 20 quantitative effectiveness studies, and 16 qualitative implementation studies across primary care and specialty populations. Various prediction models, tools, and triggers to identify patients are available, but none were evaluated for effectiveness or implementation. Numerous patient and caregiver education tools are available, but none were evaluated for effectiveness or implementation. All of the shared decision-making tools addressed advance care planning; these tools may increase patient satisfaction and advance directive documentation compared with usual care (SOE: low). Patients and caregivers prefer advance care planning discussions grounded in patient and caregiver experiences with individualized timing. Although numerous education and training resources for nonpalliative care clinicians are available, we were unable to draw conclusions about implementation, and none have been evaluated for effectiveness. The models evaluated for integrating palliative care were not more effective than usual care for improving health-related quality of life or patient depressive symptom scores (SOE: moderate) and may have little to no effect on increasing patient satisfaction or decreasing overall symptom burden (SOE: low), but models for integrating palliative care were effective for increasing advance directive documentation (SOE: moderate). Multimodal interventions may have little to no effect on increasing advance directive documentation (SOE: low) and other graded outcomes were not assessed. For utilization, models for integrating palliative care were not found to be more effective than usual care for decreasing hospitalizations; we were unable to draw conclusions about most other aspects of utilization or cost and resource use. We were unable to draw conclusions about caregiver satisfaction or specific characteristics of models for integrating palliative care. Patient preferences for appropriate timing of palliative care varied; costs, additional visits, and travel were seen as barriers to implementation. Conclusions. For integrating palliative care into ambulatory care for serious illness and conditions other than cancer, advance care planning shared decision-making tools and palliative care models were the most widely evaluated interventions and may be effective for improving only a few outcomes. More research is needed, particularly on identification of patients for these interventions; education for patients, caregivers, and clinicians; shared decision-making tools beyond advance care planning and advance directive completion; and specific components, characteristics, and implementation factors in models for integrating palliative care into ambulatory care.
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6

Travis, Amanda, Margaret Harvey, and Michelle Rickard. Adverse Childhood Experiences and Urinary Incontinence in Elementary School Aged Children. University of Tennessee Health Science Center, October 2021. http://dx.doi.org/10.21007/con.dnp.2021.0012.

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Purpose/Background: Adverse Childhood Experiences (ACEs) have an impact on health throughout the lifespan (Filletti et al., 1999; Hughes et al., 2017). These experiences range from physical and mental abuse, substance abuse in the home, parental separation or loss, financial instability, acute illness or injury, witnessing violence in the home or community, and incarceration of family members (Hughes et al., 2017). Understanding and screening for ACEs in children with urinary incontinence can help practitioners identify psychological stress as a potentially modifiable risk factor. Methods: A 5-month chart review was performed identifying English speaking patients ages 6-11 years presenting to the outpatient urology office for an initial visit with a primary diagnosis of urinary incontinence. Charts were reviewed for documentation of individual or family risk factors for ACEs exposure, community risk factors for ACEs exposures, and records where no related documentation was included. Results: For the thirty-nine patients identified, no community risk factors were noted in the charts. Seventy-nine percent of patients had one or more individual or family risk factors documented. Implications for Nursing Practice This chart review indicates that a significant percentage of pediatric, school-aged patients presenting with urinary incontinence have exposure to ACEs. A formal assessment for ACEs at the time of initial presentation would be helpful to identify those at highest risk. References: Felitti VJ, Anda RF, Nordenberg D, Williamson DF, Spitz AM, Edwards V, Koss MP, Marks JS. Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults: the adverse childhood experiences (ACE) study. Am J Prev Med. 1998;14:245–258 Hughes, K., Bellis, M.A., Hardcastle, K.A., Sethi, D., Butchart, D., Mikton, C., Jones, L., Dunne, M.P. (2017) The effect of multiple adverse childhood experiences on health: a systematic review and meta-analysis. Lancet Public Health, 2(8): e356–e366. Published online 2017 Jul 31.doi: 10.1016/S2468-2667(17)30118-4 Lai, H., Gardner, V., Vetter, J., & Andriole, G. L. (2015). Correlation between psychological stress levels and the severity of overactive bladder symptoms. BMC urology, 15, 14. doi:10.1186/s12894-015-0009-6
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7

MacArtney, John I., Joanna Fleming, Abi Eccles, Catherine Grimley, Helen Wesson, Catriona Mayland, Sarah Mitchell, et al. Impact of Covid-19 pandemic on Hospices (ICoH): Carer Cohort Report. University of Warwick Press, May 2022. http://dx.doi.org/10.31273/978-1-911675-03-7.

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This report describes the diversity of experiences informal carers for people with life-limiting illnesses who were supported by hospices in the West Midlands during the pandemic. It is one of four cohort reports – the others focus on patients, frontline hospice staff, and senior managers respectively – that form the evidence base for a Policy Report into the impact of Covid-19 on hospices. In these reports we address the nine key themes that were identified as potentially important in our previous collaborative knowledge synthesis (MacArtney et al., 2021) and seek to address some of the policy gaps we identified in our review of recommendations for hospice practice and policy (Langen-Datta et al., 2022). Together these outputs are the result of an Economic and Social Research Council funded study (grant number: ES/W001837/1). This is one of the first studies to contribute an in-depth exploration of hospice-based experiences of the pandemic to the growing body of knowledge about the effectiveness and effects of changes to hospice services, at regional and national levels in response to Covid-19. The aim of this report is therefore to explore experiences of those informal carers of people with life-limiting conditions and the effects of the Covid-19 pandemic on the care and support they experienced, to identify recommendations for clinical practice and healthcare policy. Drawing on these findings, this report offers recommendations for hospices and clinicians who continue to provide care and support for people with life limiting conditions and those that care them during the ongoing pandemic. These recommendations will also be of interest to local commissioners who will need to work with hospices in their region to ensure informal carers receive the support they need, and national policymakers who will need to ensure the necessary resources and guidance are available.
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Dahl, Kristina, and Rachel Licker. Too Hot to Work: Assessing the Threats Climate Change Poses to Outdoor Workers. Union of Concerned Scientists, August 2021. http://dx.doi.org/10.47923/2021.14236.

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Outdoor workers face severe risks from extreme heat—risks that will increasingly threaten the health and livelihood of tens of millions of outdoor workers in the United States as climate change makes dangerously hot days more frequent and intense. With economic and legal systems that routinely discount their lives and safety, workers who experience heat-related injuries or illnesses on the job have little to no recourse. By midcentury, with no action to reduce global warming emissions, an estimated $37.1 billion in outdoor workers’ earnings would be at risk annually due to extreme heat. Even with bold action to limit emissions, outdoor workers will face severe and rising risks from extreme heat. Policymakers and employers must take actions to protect outdoor workers.
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9

Shaw, Kristi Lee, and Geoff Bridgman. Creating Appreciation and Community Support for Mothers Caring for a Child with an Anxiety Disorder. Unitec ePress, February 2023. http://dx.doi.org/10.34074/mono.097.

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This research examined a unique approach to anxiety disorder, one of the most prevalent and growing mental health concerns internationally. It uncovered the mostly invisible and challenging experiences of mothers caring for a child with an anxiety disorder and the value of their reciprocal relationships with their children for both their health and wellbeing. In addition, it explored social identity in making meaningful connection using a generative action-oriented social approach to address anxiety in the community. An appreciative inquiry, using social constructionist theory, and underpinned by elements of kaupapa Māori values, was utilised to explore the research questions. The data was collected via paired interviews, focus groups and small questionnaires with three to four mothers, after which thematic analysis was undertaken to identify important themes.There were four key themes discovered in the findings: (1) the mothers’ ongoing and challenging experiences of being silenced and isolated on the fringes, navigating the quagmire of social and institutional systems to help them help their children; (2) the mothers’ learning to cope by creating calm in the home, the child, and in themselves, often requiring them to ‘suspend’ their lives until their children become more independent; (3) the mothers employing a mother as advocate identity to face the challenges, and co-creating a mother as advocate group identity to continue to face those challenges to design a collective initiative;and (4) the value of freedom that the mothers experienced participating in the appreciative inquiry process with other mothers facing similar challenges and sharing their stories.This study demonstrates how appreciative inquiry is aligned with and supports the value of social identity theory and creating meaningful connections to help position and address anxiety disorder in the community. A key insight gained in this study is that our current social and institutional systems create disconnection in many facets of Western life, which contributes to the generation and perpetuation of stigmatisation, isolation and anxiety disorder. Within a Western capitalistic and individualistic culture, mental illness has become predominantly pathologised and medicated, positioning anxiety disorder within the child, and relegating the social dimension of the biopsychosocial approach as almost irrelevant. As mothers in this system spend valuable energy advocating for more support for their children, they put their own mental health at risk. There is no one solution; however, this study demonstrates that when mothers are supported through an appreciative inquiry process, strengthening their personal and social identities, there is the potential for health and wellbeing to increase for them, their children and the community.
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10

MacArtney, John I., Joanna Fleming, Abi Eccles, Catherine Grimley, Helen Wesson, Catriona Mayland, Sarah Mitchell, et al. Impact of Covid-19 pandemic on Hospices (ICoH): Patient Cohort Report. University of Warwick Press, May 2022. http://dx.doi.org/10.31273/978-1-911675-02-0.

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Abstract:
This report describes the diversity of experiences of people with life-limiting illnesses who were supported by hospices in the West Midlands during the pandemic. It is one of four cohort reports – the others focus on carers, frontline hospice staff, and senior managers respectively – that form the evidence base for a Policy Report into the impact of Covid-19 on hospices. In these reports we address the nine key themes that were identified as potentially important in our previous collaborative knowledge synthesis (MacArtney et al., 2021) and seek to address some of the policy gaps we identified in our review of recommendations for hospice practice and policy (Langen-Datta et al., 2022). Together these outputs are the result of an Economic and Social Research Council funded study (grant number: ES/W001837/1) that is one of the first studies to contribute an in-depth exploration of hospice-based experiences of the pandemic to the growing body of knowledge about the effectiveness and effects of changes to hospice services, at regional and national levels in response to Covid-19. The aim of this report is therefore to explore experiences of those with life-limiting conditions the effects of the Covid-19 pandemic on the care and support to identify recommendations for clinical practice and healthcare policy. Drawing on these findings, this report offers recommendations for hospices and clinicians who continue to provide care and support for people with life limiting conditions during the ongoing pandemic. These recommendations will also be of interest to local commissioners who will need to work with hospices in their region to ensure people with life-limiting conditions receive the support they need, and national policymakers who will need to ensure the necessary resources and guidance are available.
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