| 1. |
- Bernhardson, Britt-Marie, et al.
(författare)
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Sensations, symptoms, and then what? : Early bodily experiences prior to diagnosis of lung cancer
- 2021
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Ingår i: PLOS ONE. - : Public Library of Science. - 1932-6203. ; 16:3
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Tidskriftsartikel (refereegranskat)abstract
- Lung cancer (LC) generally lacks unique core symptoms or signs. However, there are a multitude of bodily sensations that are often non-specific, not easily understood, and many times initially not recognized as indicative of LC by the affected person, which often leads to late diagnosis. In this international qualitative study, we inductively analyzed retrospective accounts of 61 people diagnosed with LC in Denmark, England and Sweden. Using the bodily sensations they most commonly spoke about (tiredness, breathlessness, pain, and cough), we constructed four sensation-based cases to understand the pre-diagnostic processes of reasoning and practice triggered by these key indicators of LC. We thereafter critically applied Hay's model of sensations to symptoms transformation, examining its central concepts of duration, disability and vulnerability, to support understanding of these processes. We found that while duration and disability are clearly relevant, vulnerability is more implicitly expressed in relation to perceived threat. Tiredness, even when of long duration and causing disability, was often related to normal aging, rather than a health threat. Regardless of duration, breathlessness was disturbing and threatening enough to lead to care-seeking. Pain varied by location, duration and degree of disability, and thus also varied in degree of threat perceived. Preconceived, but unmet expectations of what LC-related cough and pain would entail could cause delays by misleading participants; if cough lasted long enough, it could trigger health care contact. Duration, disability, and sense of threat, rather than vulnerability, were found to be relevant concepts for understanding the trajectory to diagnosis for LC among these participants. The process by which an individual, their family and health care providers legitimize sensations, allowing them to be seen as potential symptoms of disease, is also an essential, but varying part of the diagnostic processes described here.
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| 2. |
- Kitson, Alison, et al.
(författare)
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Stroke survivors’ experiences of the fundamentals of care : A qualitative analysis
- 2013
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Ingår i: International Journal of Nursing Studies. - : Elsevier BV. - 0020-7489 .- 1873-491X. ; 50:3, s. 392-403
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundManaging the fundamentals of care (e.g. elimination, personal hygiene, eating,) needs to be more explicitly addressed within the patient-centred care discourse. It is not possible to investigate issues of patient dignity and respect without acknowledging these basic physical needs. While the literature on caring for people with a stroke is extensive, no studies to date have described stroke survivors’ experiences of all of these fundamentals during the in-hospital phase of their care.DesignSecondary analysis of qualitative data grounded in interpretative phenomenology Participants and settings: Fifteen stroke survivors with in-hospital experiences from multiple healthcare settings and healthcare professionals across the United Kingdom were included.MethodA secondary thematic analysis of primary narrative interview data from stroke survivors.ResultsSurvivors of strokes have vivid and often distressing recollections of their experiences of the fundamentals of care. For every description of a physical need (elimination, eating and drinking, personal hygiene) there where lucid accounts of the psychosocial and emotional impact (humiliation, distress, lack of dignity, recovery, confidence). Linked to the somatic and emotional dimensions were narratives around the relationship between the patient and the carer (nurse, doctor, allied health professional). Positive recollections of the fundamentals of care were less evident than more distressing experiences. Consistent features of positive experiences included: stroke survivors describing how the physical, psychosocial and relational dimensions of care were integrated and coordinated around their particular need. They reported feeling involved in setting achievable targets to regain control of their bodily functions and regain a sense of personal integrity and sense of self. Sociological constructs such as biographical disruption and loss of self were found to be relevant to stroke survivors’ experiences. Indeed, such constructs may be more linked to the disruption of such fundamental activities rather than the experience of the illness itself.ConclusionsWe recommend more practical and integrated approaches be taken around understanding and meeting the physical, psychosocial and relational needs of patients in hospital which could lead to more patient-centred care experiences. These three dimensions need to co-exist in every care episode. More exploration is required to identify the common fundamentals of care needs of patients regardless of illness experience.
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| 3. |
- Locock, Louise, et al.
(författare)
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Involving service users in the qualitative analysis of patient narratives to support healthcare quality improvement
- 2019
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Ingår i: Research in Social Science and Disability. - : BioMed Central. - 1479-3547. ; 5:1
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Tidskriftsartikel (refereegranskat)abstract
- Patient or user involvement in health research is well-established but is often limited to advising on research questions and design, leaving researchers to collect and analyse ‘data’ (which in this paper means written copies of interviews with patients about their experiences). We were working with sets of interviews with 1) young people with depression and 2) people with experiences of stroke. We were looking for key themes that it would be useful for the NHS to know about, and we developed short films which healthcare staff can use to think about how to make care more patient-centred. We wanted to see what user involvement in this analysis would bring, and how best to achieve it practically.
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| 4. |
- Locock, Louise, et al.
(författare)
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Patients, families, and care settings
- 2019
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Ingår i: Context in action and how to study it. - Oxford : Oxford University Press. - 9780198805304 ; , s. 155-165
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Bokkapitel (refereegranskat)
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| 5. |
- MacArtney, John, et al.
(författare)
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Patients' initial steps to cancer diagnosis in Denmark, England and Sweden : what can a qualitative, cross-country comparison of narrative interviews tell us about potentially modifiable factors?
- 2017
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Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 7:11
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: To illuminate patterns observed in International Cancer Benchmarking Programme studies by extending understanding of the various influences on presentation and referral with cancer symptoms.DESIGN: Cross-country comparison of Denmark, England and Sweden with qualitative analysis of in-depth interview accounts of the prediagnostic process in lung or bowel cancer.PARTICIPANTS: 155 women and men, aged between 35 and 86 years old, diagnosed with lung or bowel cancer in 6 months before interview.SETTING: Participants recruited through primary and secondary care, social media and word of mouth. Interviews collected by social scientists or nurse researchers during 2015, mainly in participants' homes.RESULTS: Participants reported difficulties in interpreting diffuse bodily sensations and symptoms and deciding when to consult. There were examples of swift referrals by primary care professionals in all three countries. In all countries, participants described difficulty deciding if and when to consult, highlighting concerns about access to general practitioner appointments and overstretched primary care services, although this appears less prominent in the Swedish data. It was not unusual for there to be more than one consultation before referral and we noted two distinct patterns of repeated consultation: (1) situations where the participant left the primary care consultation with a plan of action about what should happen next; (2) participants were unclear about under which conditions to return to the doctors. This second pattern sometimes extended over many weeks during which patients described uncertainty, and sometimes frustration, about if and when they should return and whether there were any other feasible investigations. The latter pattern appeared more evident in the interviews in England and Denmark than Sweden.CONCLUSION: We suggest that if clear action plans, as part of safety netting, were routinely used in primary care consultations then uncertainty, false reassurance and the inefficiency and distress of multiple consultations could be reduced.
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