The measurement of irritable bowel syndrome (Ibs)-Related misconceptions in people with ibs

Dancey, Christine P.; Fox, Rachel; Devins, Gerald M.

doi:10.1016/s0022-3999(99)00039-2

Cited by 8 publications

(8 citation statements)

References 12 publications

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“…Next, 4 questionnaires contained dimensions more related to “ patients’ knowledge” , assessing patient’s misconceptions [92], knowledge about illness, lifestyle, treatment management or monitoring [93], skill and technique acquisition, health services navigation [94], allowed and recommended activities, entitlements, social and health care support [95].…”

Section: Resultsmentioning

confidence: 99%

A systematic review of dimensions evaluating patient experience in chronic illness

Forestier

Anthoine

Réguiai

et al. 2019

Health Qual Life Outcomes

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BackgroundLiving with a chronic disease often means experiencing chronic treatments and regular multidisciplinary monitoring as well as a profound life-changing experience which may impact all aspects of a patients life. The patient experience of chronic disease is frequently assessed by patient reported measures (PRMs) which incorporate patients perspectives to better understand how illness, treatment and care impact the entirety of a patient’s life. The purpose of this review was to collect and review different kinds of available PRM instruments validated for chronic patients, to produce an inventory of explored concepts in these questionnaires and to identify and classify all dimensions assessing chronic patients experience.MethodsA systematic review of PRM instruments validated for chronic patients was conducted from three databases (Medline, the Cochrane library, and Psycinfo). Articles were selected after a double reading and questionnaires were classified according to their targeted concept. Then, all dimensions of the questionnaires were clustered into different categories.Results107 primary validation studies of PRM questionnaires were selected. Five kinds of instruments were recorded: 1) Questionnaires assessing health related quality of life or quality of life; 2) Instruments focusing on symptoms and functional status; 3) Instruments exploring patients’ feelings and attitude about illness; 4) Questionnaires related to patients’ experience of treatment or healthcare; 5) Instruments assessing patients attitudes about treatment or healthcare. Twelve categories of dimensions were obtained from these instruments.ConclusionsThis review provided an overview of some of the dimensions used to explore chronic patient experience. A large PRM diversity exists and none of the reviewed and selected questionnaires covered all identified categories of dimensions of patient experience of chronic disease. Furthermore, the definition of explored concepts varies widely among researchers and complex concepts often lack a clear definition in the reviewed articles. Before attempting to measure chronic patient experience, researchers should construct appropriate instruments focusing on well-defined concepts and dimensions encompassing patient’s personal experience, attitude and adaptation to illness, treatment or healthcare.Electronic supplementary materialThe online version of this article (10.1186/s12955-019-1084-2) contains supplementary material, which is available to authorized users.

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Section: Resultsmentioning

confidence: 99%

A systematic review of dimensions evaluating patient experience in chronic illness

Forestier

Anthoine

Réguiai

et al. 2019

Health Qual Life Outcomes

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“…In many cases, this hiding didn't help with familymembers thought participants were "in a mood," or lying about being ill because they looked normal, or as noted above, "didn't really believe the suffering part." Humans tend to be naturally suspicious of anything they do not understand, needing credible evidence of illness to believe it exists (Ali et al, 2000;Dancey, Fox, & Devins, 1999 Family members may, as the general public do, find it more difficult to acknowledge illness in conditions that are usually invisible, including IBD and epilepsy, irritable bowel syndrome, chronic fatigue syndrome or chronic back pain, and more so when public knowledge about the condition is poor (Jenkin, Koch, & Kralik, 2006). Referring to Heidegger's notions of concealment and unconcealment as relating to truth, Withy (2017) explains that to show up meaningfully is for an entity to be unconcealed as there, rather than not.…”

Section: Lacking Acknowledgement / Being Acknowledgedmentioning

confidence: 99%

When Family Don’t Acknowledge: A Hermeneutic Study of the Experience of Kinship Stigma in Community-Dwelling People With Inflammatory Bowel Disease

2019

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Recent evidence suggests that kinship stigma—the experience of being or feeling stigmatized by family members—arises in the stories of people with inflammatory bowel disease (IBD). Adopting Goffman’s definition of stigma as “an attribute which is deeply discrediting,” we used hermeneutic (interpretive) phenomenology to further explore the meaning of kinship stigma for people with IBD and reveal its significance. In total, 18 unstructured interviews took place in participants’ own homes in the United Kingdom, between July 2015 and April 2016. Transcripts were analyzed using a hermeneutic method to reveal three relational themes and one constitutive pattern. Referring to relevant literature, the presence and impact of kinship stigma on people with IBD is revealed. Kinship stigma—experienced as and meaning a lack of acknowledgment—may have wide-ranging implications for health and social care professionals caring for persons with IBD or other chronic illness and their families.

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“…[4][5][6][7] In the area of IBS, little is known about effective ways to educate patients about this disorder. A large proportion of IBS patients have misconceptions about their disease, 8,9 feel poorly informed about their condition, and are unhappy with their knowledge of IBS. 10 In addition, IBS patients often feel frustrated, isolated, and misunderstood by the physicians.…”

mentioning

confidence: 99%

A Survey on Patient Educational Needs in Irritable Bowel Syndrome and Attitudes Toward Participation in Clinical Research

Halpert

Thomas²,

Hu³

et al. 2006

Journal of Clinical Gastroenterology

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The measurement of irritable bowel syndrome (Ibs)-Related misconceptions in people with ibs

Cited by 8 publications

References 12 publications

A systematic review of dimensions evaluating patient experience in chronic illness

A systematic review of dimensions evaluating patient experience in chronic illness

When Family Don’t Acknowledge: A Hermeneutic Study of the Experience of Kinship Stigma in Community-Dwelling People With Inflammatory Bowel Disease

A Survey on Patient Educational Needs in Irritable Bowel Syndrome and Attitudes Toward Participation in Clinical Research

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