Chronic Illness

Charmaz, Kathy; Rosenfeld, Dana

doi:10.1002/9781444314786.ch14

Cited by 20 publications

(26 citation statements)

References 87 publications

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“…While this gave us useful contextual data, the researchers often had to reorientate the interview to focus on the experience of the caregivers and their unmet needs. Possible explanations for this phenomenon are ‘normalisation’ or ‘passing.’ Normalisation refers to a process where the individual treats an illness or disability as routine, 29 often in order to avoid stigmatisation. Caregivers present ‘a face’ as coping as they believe they are expected to cope, and it is this phenomenon that health professionals need to be aware of as they tailor care to the family.…”

Section: Discussionmentioning

confidence: 99%

Behind the smile: qualitative study of caregivers’ anguish and management responses while caring for someone living with heart failure

2017

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BackgroundCaregivers support self-management in heart failure but often experience stress, anxiety and ill health as a result of providing care.Aims1. To identify the factors that contribute to the experience of anguish.2. To understand how caregivers learn to live with what is frequently a challenging and demanding role.MethodsIndividual interviews with caregivers who had been caring for someone with heart failure for a minimum of 6 months. We used thematic analysis to inductively analyse transcripts.ResultsTwenty-two caregivers, from three centres in the United Kingdom, took part in individual interviews. The caregivers were aged between 39 and 84 years, and six were men. Twenty were in spousal or partner relationships. We found that caregivers often hide the extent of their emotional stress or anguish. We identified four main themes with explanatory subthemes—emotional impact (fear for the future and sense of hopelessness), role definition (changing sense of who I am, reduced resilience, learning care skills, role conflict and changing role), exclusion (exclusion by the cared-for person and by health professionals and feeling alone) and ignoring one’s own health—that were associated with anguish. From these findings, we produced a caregiver needs assessment model in the context of caring for a person with heart failure.Conclusions and implications for practiceCaregivers have many unmet and hidden needs. Primary care health professionals are well placed to meet the needs of caregivers. The model may be used by health and social care professionals to identify needs and to provide caregivers with targeted practical and emotional support; and for researchers developing interventions to enhance self-management in heart failure.

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Section: Discussionmentioning

confidence: 99%

Behind the smile: qualitative study of caregivers’ anguish and management responses while caring for someone living with heart failure

2017

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“…This development has been fostered by campaigns encouraging patients to ask their physicians questions (Judson et al, 2013). Reasons for this shift of paradigm are numerous, with the most important ones being the crisis of the expert role in society (Beck, 1992), the greater availability of medical information for patients in self-help groups and Internet sites (Neuberger, 2000), the increasing role of chronic incurable diseases (Charmaz and Rosenfeld, 2010), and medical progress that has created more treatment options and, thus, more opportunities for decision-making in the cure process. The general idea of the model consists of multiple aspects: Both the doctor and patient are seen as experts-the doctor for conveying medical information, and the patient for their own preferences and living situation.…”

Section: Paternalistic and Egalitarian Modelsmentioning

confidence: 99%

The Educational Gradient in Self-Rated Health in Europe: Does the Doctor-Patient Relationship Make a Difference?

Präg¹,

Wittek²,

Mills³

2017

Preprint

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Research suggests that doctor-patient relations have evolved from a doctorcentered, paternalistic approach towards a more patient-centered, egalitarian model of interactions between physicians and their patients. Given the longrunning debate on the positive relationship between education and health, the question arises how this development in doctor-patient relations affects social inequalities in health. First, we test to what extent egalitarian (e.g. discussing treatment decisions with patients) doctor-patient relations are underlying the education-self-reported health association. Second, we test whether egalitarian and paternalistic (e.g. withholding some information from patients) doctor-patient relations show differential effects on self-reported health across educational groups. Analyses of the European Social Survey (ESS) 2004/2005 for 24 countries demonstrate that a more egalitarian doctor-patient relationship does not substantially reduce educational inequalities in self-reported health. However, some direct positive effects of egalitarian and direct negative effects of paternalistic doctor-patient relations on health ratings can be found. Finally, results show how the health status of the lower educated can improve with a more egalitarian and less paternalistic doctor-patient relationship.

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“…Management of chronic conditions continues to be a global healthcare priority and recovery of individuals should not be neglected in their care. Routine treatment and management of disease occur more at home than in the healthcare unit and patients and their families become active participants in therapy and care (Charmaz & Rosenfeld ). It is known that individuals with chronic disease tend to develop a set of learnings and strategies that enable them to live with the disease and self‐management can influence the level of maintenance and improvement of their health condition (Novais et al .…”

Section: Introductionmentioning

confidence: 99%

“…when they appear, how long they last, how to prevent them and how to decrease their intensity), which results in self‐management of care (Mendes , Mantovani & Mendes ). In addition, chronic illness has an impact on social relationships of patients, where they focus on efforts to reduce the stigma of the illness itself and the bodily behaviours associated with it (Bury , Charmaz & Rosenfeld ).…”

Section: Introductionmentioning

confidence: 99%