Patient Power and Control: A Study of Women with Uncertain Illness Trajectories

Åsbring, Pia; Närvänen, Anna-Liisa

doi:10.1177/1049732303260682

Cited by 77 publications

(66 citation statements)

References 41 publications

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“…When doctors attribute MUPS conditions to mental and social causes, patients often perceive it as psychologising and trivialising their symptoms (Anderson et al, 2012; Åsbring & Närvänen, 2004; Rosendal et al, 2013; Schoofs et al, 2004). The lack of biomedical knowledge and efficient medical treatment limits doctors’ ability to help these patients, and this might lead them to distance themselves (Åsbring & Närvänen, 2003).…”

Section: Discussionmentioning

confidence: 99%

“It´s incredible how much I´ve had to fight.” Negotiating medical uncertainty in clinical encounters

Lian

Robson

2017

International Journal of Qualitative Studies on Health and Well

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Purpose: Clinical encounters related to medically unexplained physical symptoms (MUPS) are associated with high levels of conflict between patients and doctors. Collaborative difficulties are fused by the medical uncertainty that dominates these consultations. The main aim of this study is to explore the interactional dynamics of clinical encounters riddled by medical uncertainty, as experienced by people living with long-term medically unexplained fatigue in Norway. Method: A qualitative thematic analysis of written texts from 256 study participants. Results: We found that patients experience being met with disbelief, inappropriate psychological explanations, marginalisation of experiences, disrespectful treatment, lack of physical examination and damaging health advice. The main source of their discontent is not the lack of biomedical knowledge, but doctors who fail to communicate acknowledgement of patients’ experiences, knowledge and autonomy. War metaphors are emblematic of how participants describe their medical encounters. The overarching storyline depicts experiences of being caught in a power struggle with doctors and health systems, fused by a lack of common conceptual ground. Conclusion: When physical symptoms cannot be detected, explained and managed by biomedical knowledge and technology, good doctor-patient partnerships are crucial. Without clearly acknowledging patients’ perspectives and capabilities in clinical practice, such partnerships cannot be achieved.

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Section: Discussionmentioning

confidence: 99%

“It´s incredible how much I´ve had to fight.” Negotiating medical uncertainty in clinical encounters

Lian

Robson

2017

International Journal of Qualitative Studies on Health and Well

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“…36 Patients describe a need to fi nd a way of managing their illness and to infl uence caregivers, including their health professionals. Their narratives describe how they try to gain control over their situation by acquiring knowledge about the illness 40 and presenting this knowledge to their family physician. It has been previously suggested that knowledge and understanding provide patients with sources of power within a consultation.…”

Section: Comparisons With Published Literaturementioning

confidence: 99%

Using Multiple Sources of Knowledge to Reach Clinical Understanding of Chronic Fatigue Syndrome

Chew‐Graham

Cahill²,

Dowrick³

et al. 2008

The Annals of Family Medicine

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PURPOSE Chronic fatigue syndrome (CFS), or myalgic encephalitis (ME), is a contentious condition and often a diagnosis of exclusion. Current policy in the United Kingdom recommends management in primary care. We explored how patients with CFS/ME and family physicians understand this condition and how their understanding might affect the primary care consultation. METHODSWe undertook a qualitative study with patients and family physicians from North West England participating in a primary care-based randomized controlled trial (FINE Trial). Data were collected through purposive sampling and in-depth semistructured interviews with 24 patients and 14 family physicians. We analyzed interview transcripts using constant comparison methods. RESULTSFamily physicians access social and cultural knowledge to reach a clinical understanding of CFS/ME and its management. Patients recognize the diffi culties family physicians encounter in understanding their symptoms and access similar nonclinical sources of information. We suggest that both patients and physicians use biomedical discourse within the consultation: the physician to maintain the position as an expert, the patient to engage the physician. CONCLUSIONSFamily physicians obtain information about CFS/ME from their nonprofessional world, which they incorporate into their professional realm. Patients and physicians describe the use of the discourse of science within consultations about CFS/ME. This form of shared understanding could lead to a positive collaborative interaction. Family physicians need a biomedical, evidence-based knowledge about CFS/ME. There is potential to use the rich knowledge base that patients can bring to consultations in training initiatives directed at family physicians. Ann Fam Med 2008;6:340-348. DOI: 10.1370/afm.867. INTRODUCTIONC hronic fatigue syndrome (CFS), or myalgic encephalitis (ME), is a chronic incapacitating illness that leads to individual disability 1 and lost productivity. 2,3 The annual economic impact of chronic fatigue syndrome in the United States is estimated to be $9.1 billion in lost productivity, not including medical costs or disability payments. The average family affected by CFS/ME loses $20,000 a year in wages and earnings.1 Patients usually experience multiple additional symptoms, 4 commonly with comorbid psychiatric disorders. 5 Prognosis is poor 6 and is accompanied by functional impairment and reduced quality of life. 7 Persons with CFS/ME are high users of health care services and more likely than others to be out of work. 8 The diagnosis is surrounded by controversy. 9 Most researchers now accept the view that CFS/ME is multifactorial and distinguish among factors that predispose, precipitate, and perpetuate the condition. In 2002 the UK Department of Health recommended that CFS/ME should be managed wherever possible in the community by family physicians supported by local multidisciplinary teams. 11 In the absence of a fi rm evidence base for treatment of CFS/ME in primary care, this recommendation was ...

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“…Making demands was another strategy where women pressed health professionals to carry out various interventions, such as conducting tests or writing referrals to specialists. Women with CFS seemed to be in more control than the women with fibromyalgia, and the authors suggested this might be because women with CSF had relatively higher levels of education (Asbring and Naravanen, 2004). This study"s findings suggested that relatively higher educational attainment fostered the salience of the irrepressible and combater identities, and was associated with the assertive behaviours women who portrayed those identities demonstrated.…”

Section: Chronic Illness As a Subjective Experience And Experiences mentioning

confidence: 58%

Chronic low back pain and the construction of illness identities in women from Kuwait

Abdal¹

2016

Manual Therapy

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Chronic low back pain (CLBP) has been identified as a prominent health problem and a major cause of disability. Recent research has focussed on providing a better understanding of subjective experiences of people with CLBP; however, emphasis continues to be geared towards the physical restrictions associated with CLBP. There is a scarcity of literature that considers the relation between self and identity, and people"s experiences with CLBP. Moreover, studies have concentrated on the experiences of people in Western contexts; to date, no studies have been carried out in Middle Eastern sociocultural contexts including Kuwait. Finally, there is a deficiency of studies that focus on the particularity of the experiences of women with CLBP and the impact on identity. This is the first study that investigates how women with CLBP construct illness identities in Kuwait.This study adopted a constructivist grounded theory methodology using dimensional analysis. In line with the grounded theory (GT) approach, data collection and analysis took place concurrently. A longitudinal study design was adopted. Semi-structured interviews were used to investigate women"s perspectives on their experiences with CLBP in relation to their socio-political and cultural context. Eleven women were recruited from three musculoskeletal outpatient clinics in Kuwait. Initially, five women were purposively sampled. A follow up interview was conducted with four of those women one year after the initial interview to investigate any changes in their experiences. Subsequently, six women were theoretically sampled with the aim of comparing the influence of age, educational level, marital status, socioeconomic status and time on women"s illness experiences.The findings of this study offer the first explanatory theory of the construction of illness identities of women with CLBP in Kuwait. Women"s identities can be seen as part of a continuum from oppressed at one end to liberated at the other. Salience of oppressed identities was associated with periods of exacerbation of CLBP and passive coping behaviours. Appearance of liberated identities was accompanied with episodes of remission of CLBP and active coping approaches. Changes in women"s social circumstances, thoughts and feelings over time were related to changes in the identities they portrayed, and changes in their manifestation of CLBP and illness experiences. The substantive theory developed through this study has implications for clinical practice, education and research, and may inform physiotherapy professional development activities in Kuwait.

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Patient Power and Control: A Study of Women with Uncertain Illness Trajectories

Cited by 77 publications

References 41 publications

“It´s incredible how much I´ve had to fight.” Negotiating medical uncertainty in clinical encounters

“It´s incredible how much I´ve had to fight.” Negotiating medical uncertainty in clinical encounters

Using Multiple Sources of Knowledge to Reach Clinical Understanding of Chronic Fatigue Syndrome

Chronic low back pain and the construction of illness identities in women from Kuwait

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