"I Know This Is Bad for Me, But…"

Fletcher, Paula C.; Jamieson, Anne; Schneider, Margaret A.; Harry, R

doi:10.1097/01.nur.0000311707.32566.c8

Cited by 38 publications

(38 citation statements)

References 22 publications

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“…Similar themes feature prominently in "I am Doing the Best That I Can Do! ", a series of publications that tells the personal stories of six IBS and two UC female patients [24-26]. Our data build upon these earlier findings by articulating both positive as well as negative dimensions of patient experiences from a geographically broad and diagnostically diverse group.…”

Section: Discussionsupporting

confidence: 70%

Experiences of patients with chronic gastrointestinal conditions: in their own words

McCormick

Hammer

Farrell

et al. 2012

Health Qual Life Outcomes

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BackgroundIrritable bowel syndrome (IBS) and inflammatory bowel disease (IBD) are chronic conditions affecting millions of individuals in the United States. The symptoms are well-documented and can be debilitating. How these chronic gastrointestinal (GI) conditions impact the daily lives of those afflicted is not well documented, especially from a patient's perspective.MethodsHere we describe data from a series of 22 focus groups held at three different academic medical centers with individuals suffering from chronic GI conditions. All focus groups were audio recorded and transcribed. Two research team members independently analyzed transcripts from each focus group following an agreed upon coding scheme.ResultsOne-hundred-thirty-six individuals participated in our study, all with a chronic GI related condition. They candidly discussed three broad themes that characterize their daily lives: identification of disease and personal identity, medications and therapeutics, and daily adaptations. These all tie to our participants trying to deal with symptoms on a daily basis. We find that a recurrent topic underlying these themes is the dichotomy of experiencing uncertainty and striving for control.ConclusionsStudy participants' open dialogue and exchange of experiences living with a chronic GI condition provide insight into how these conditions shape day-to-day activities. Our findings provide fertile ground for discussions about how clinicians might best facilitate, acknowledge, and elicit patients' stories in routine care to better address their experience of illness.

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Section: Discussionsupporting

confidence: 70%

Experiences of patients with chronic gastrointestinal conditions: in their own words

McCormick

Hammer

Farrell

et al. 2012

Health Qual Life Outcomes

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“…Overall, the findings revealed experiences of insufficient information about the disease, treatment options such as diet changes ( Bertram et al, 2001 ), and ways of managing the illness in everyday life ( Casiday et al, 2009 ;Dixon-Woods & Critchley, 2000 ;Drossman et al, 2009 ). These matters made the participants feel frustrated and as though they had been left alone with their illness ( Fletcher, Jamieson, Schneider, & Harry, 2008 ). Disappointment with healthcare consultations sometimes resulted in participants resorting to alternative therapies, or seeking advice elsewhere in society, thus placing control of treatment in their own hands ( Kennedy et al, 2003 ;Kim & Park, 2011 ;Lu et al, 2009 ).…”

Section: Lack Of Information and Supportmentioning

confidence: 99%

“…Instead, they sought other sources of information, for example, public lectures about IBS ( Håkanson et al, 2009 ) or the Internet ( Fletcher, Jamieson, et al, 2008 ). Instead, they sought other sources of information, for example, public lectures about IBS ( Håkanson et al, 2009 ) or the Internet ( Fletcher, Jamieson, et al, 2008 ).…”

Section: Learning About Disease/illnessmentioning

confidence: 99%

Everyday Life, Healthcare, and Self-Care Management Among People With Irritable Bowel Syndrome

Håkanson

2014

Gastroenterology Nursing

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Irritable bowel syndrome is a commonly recognized chronic disease in all healthcare settings. This integrative review investigated current knowledge about adults' illness-related experiences of this disease from the perspectives of everyday life, healthcare, and self-care management. The overarching findings related to everyday life with irritable bowel syndrome were life-limiting experiences of the body-self as unfamiliar and of the body and symptoms as shameful and unpredictable. The limitations manifested as lack of ability to move about freely, fulfill ambitions or commitments at work, maintain social activities, uphold or develop close and/or sexual relationships and parenting, and live a life with spontaneity. Physical condition, knowledge about disease/illness-related matters, and one's own perceived ability to find adequate strategies were significant for the ability of self-care management. Healthcare was experienced as being unsupportive and not providing information and guidance for enabling self-care management. These results suggest a need for controlled intervention trials of healthcare models that take as their point of departure the individual's experience of illness, needs, and life situation, and that enable learning and sharing of illness experiences, combined with the provision of scientific knowledge and advice from healthcare professionals.

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“…For the ill person, these troubles are often experienced as bringing about shame and embarrassment in relation to others (Hakanson, SahlbergBlom, Nyhlin, & Ternestedt, 2009). Everyday activities such as working, traveling, and socializing are often described as being limited because of ill health (Bertram, Kurland, Lydick, Locke, & Yawn, 2001;Dancey & Backhouse, 1993;Fletcher, Jamieson, Schneider, & Harry, 2008;Hakanson et al, 2009;Meadows, Lackner, & Belic, 1997;. The uncertainty of the body can negatively influence the individual's self-image, which along with physical symptoms contributes to limitations in everyday life (Hakanson et al, 2009;Ronnevig, Vandvik, & Bergbom, 2009).…”

mentioning

confidence: 99%

Being in the Patient Position: Experiences of Health Care Among People With Irritable Bowel Syndrome

2010

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The purpose of this study was to gain in-depth understanding of what it is like for a person with irritable bowel syndrome to be in the patient position in encounters with health care providers. We conducted qualitative interviews with nine individuals. Our analysis, guided by interpretive description, revealed experiences of unsupportive and supportive encounters. Unsupportive encounters were shaped by humiliation, insignificance, and abandonment. Not feeling believed and acknowledged as persons made the participants lose trust in their own experience, which enhanced their unfamiliar mood of being in the world. Supportive encounters were less prominent. These were characterized by openness and acknowledgment of the patient's lifeworld. Feeling significant and being listened to promoted feelings of being in a partnered, cocreating relationship. It is reasonable to assume that care originating in the patient's lifeworld would support the patients to use their strength to manage illness and regain familiarity in everyday life.

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"I Know This Is Bad for Me, But…"

Cited by 38 publications

References 22 publications

Experiences of patients with chronic gastrointestinal conditions: in their own words

Experiences of patients with chronic gastrointestinal conditions: in their own words

Everyday Life, Healthcare, and Self-Care Management Among People With Irritable Bowel Syndrome

Being in the Patient Position: Experiences of Health Care Among People With Irritable Bowel Syndrome

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