The threatened self: Considerations of time, place, and uncertainty in advanced illness

Nanton, Veronica; Munday, Daniel; Dale, Jeremy; Mason, Bruce; Kendall, Marilyn; Murray, Scott A

doi:10.1111/bjhp.12172

Cited by 28 publications

(21 citation statements)

References 57 publications

(53 reference statements)

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“…The participants also wanted annual checkups on their disease, to confirm or reject any progression. These are good examples of how access to the healthcare services, social support, and confidence with regard to getting help 2 , 5 , 16 improve health in a COPD trajectory. The participants’ assessment of the helpers’ level of insight into the problems associated with COPD emerged as an important phenomenon in the creation of trust in the interaction.…”

Section: Discussionmentioning

confidence: 99%

“… 1 , 2 Persons living with COPD have experienced that the health-care services are able to accommodate health-enhancing transitions when they experience common understanding and social support and feel confident with regard to getting help. 5 , 16 Difficulties in the communication between patients and health-care personnel and an experience of stigmatization may hinder beneficial processes. 17 – 19 Identification of transitions and vulnerable phases and knowledge on what may further enhance or hinder good transitions are important in order to understand the conditions for collaborative self-management.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

COPD transitions in health and self-management: service users’ experiences from everyday life

Halding

Aarsheim²,

Dolmen³

et al. 2018

COPD

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PurposeTo explore how persons living with COPD experience transitions related to health, self-management, and follow-up from the healthcare services.Patients and methodsThis study is part of a participatory research project. Six males and five females living with COPD, with a COPD assessment test score of 21–29, participated; all the participants were living at home. Data were collected in qualitative research interviews and analyzed using qualitative content analysis highlighting the participants’ experiences.ResultsThe findings showed two main themes: “The struggle to keep going” and “The need for continuity and competent facilitation”. The participants reported complex health transitions, with changes in roles and function, demanding exacerbations and critical events, and challenges with learning needed self-management. They expressed a great need for and had great benefit from, education, rehabilitation, and follow-up in their management of everyday life. Not all received offers in line with current guidelines.ConclusionIn-depth knowledge of patients’ experienced COPD transitions offers clinicians guidance for the timing and quality of follow-up services. Life with COPD entails challenging transitions in health and self-management. Good rehabilitation and follow-up from the healthcare services are needed throughout the disease trajectory. Participation in self-management education and rehabilitation that include psychosocial aspects may facilitate health-enhancing transitions and improve self-management skills. Experienced lack of competence and flexibility among healthcare providers hinders trust and collaboration. Access to stable and competent follow-up in the primary health services may facilitate cohesive services and collaborative self-management.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

COPD transitions in health and self-management: service users’ experiences from everyday life

Halding

Aarsheim²,

Dolmen³

et al. 2018

COPD

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“…Uncertainty is not necessarily a negative entity: it is patients’ appraisal and response to uncertainty that mediates its impact. 5 , 7 , 10 For example, some patients will find prognostic uncertainty protective, as it allows them to ‘look on the bright side’, while others find not knowing what will happen distressing.…”

Section: Introductionmentioning

confidence: 99%

How does uncertainty shape patient experience in advanced illness? A secondary analysis of qualitative data

et al. 2016

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Background:Uncertainty is common in advanced illness but is infrequently studied in this context. If poorly addressed, uncertainty can lead to adverse patient outcomes.Aim:We aimed to understand patient experiences of uncertainty in advanced illness and develop a typology of patients’ responses and preferences to inform practice.Design:Secondary analysis of qualitative interview transcripts. Studies were assessed for inclusion and interviews were sampled using maximum-variation sampling. Analysis used a thematic approach with 10% of coding cross-checked to enhance reliability.Setting/participants:Qualitative interviews from six studies including patients with heart failure, chronic obstructive pulmonary disease, renal disease, cancer and liver failure.Results:A total of 30 transcripts were analysed. Median age was 75 (range, 43–95), 12 patients were women. The impact of uncertainty was frequently discussed: the main related themes were engagement with illness, information needs, patient priorities and the period of time that patients mainly focused their attention on (temporal focus). A typology of patient responses to uncertainty was developed from these themes.Conclusion:Uncertainty influences patient experience in advanced illness through affecting patients’ information needs, preferences and future priorities for care. Our typology aids understanding of how patients with advanced illness respond to uncertainty. Assessment of these three factors may be a useful starting point to guide clinical assessment and shared decision making.

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“…Both the loss of identity and independence established in this study are similar to those found in other chronic illnesses [ 39 , 40 ]. The unpredictability and uncertainty of diagnosis and treatment of periprosthetic infection draw parallels with patients’ perceptions of multiple sclerosis [ 41 ], HIV [ 42 – 44 ], and cancer [ 45 ]. The disruption to the life course that patients in this study experienced is similar to those experiencing HIV and cancer diagnoses [ 46 – 48 ].…”

Section: Discussionmentioning

confidence: 99%

Infection after knee replacement: a qualitative study of impact of periprosthetic knee infection

Mallon

Gooberman-Hill

Moore

2018

BMC Musculoskelet Disord

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BackgroundApproximately 340,000 knee replacements are performed each year in the USA and UK. Around 1% of patients who have had knee replacement develop deep infection around the prosthesis: periprosthetic knee infection. Treatment often requires a combination of one or more major operations and antibiotic therapy. This study aimed to understand and characterise patients’ experiences of periprosthetic knee infection.MethodsQualitative semi-structured interviews were conducted with 16 patients (9 men, 7 women; 59–80 years, mean age 72) who experienced periprosthetic knee infection and subsequent revision treatment in six National Health Service orthopaedic departments. Interviews were audio-recorded, transcribed, anonymised and analysed thematically. The concept of biographical disruption was used to frame our analysis, and four transcripts double-coded for rigour. Patients were interviewed between two and 10 months after surgical revision.ResultsParticipant experiences can be characterised according to three aspects of biographical disruption which we have used to frame our analysis: onset and the problem of recognition; emerging disability and the problem of uncertainty, and chronic illness and the mobilisation of resources. Participants’ experiences of infection and treatment varied, but everyone who took part reported that infection and revision treatment had devastating effects on them. Participants described use of social and healthcare support and a need for more support. Some participants thought that the symptoms that they had first presented with had not been taken seriously enough.ConclusionsPeriprosthetic knee infection and its treatment can be life-changing for patients, and there is a need for greater support throughout treatment and lengthy recovery. Future work could look at preparedness for adverse outcomes, help-seeking in impactful situations, and information for healthcare professionals about early signs and care for periprosthetic infection.

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The threatened self: Considerations of time, place, and uncertainty in advanced illness

Cited by 28 publications

References 57 publications

COPD transitions in health and self-management: service users’ experiences from everyday life

COPD transitions in health and self-management: service users’ experiences from everyday life

How does uncertainty shape patient experience in advanced illness? A secondary analysis of qualitative data

Infection after knee replacement: a qualitative study of impact of periprosthetic knee infection

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The threatened self: Considerations of time, place, and uncertainty in advanced illness

Cited by 28 publications

References 57 publications

COPD transitions in health and self-management: service users&rsquo; experiences from everyday life

COPD transitions in health and self-management: service users&rsquo; experiences from everyday life

How does uncertainty shape patient experience in advanced illness? A secondary analysis of qualitative data

Infection after knee replacement: a qualitative study of impact of periprosthetic knee infection

Contact Info

Product

Resources

About

COPD transitions in health and self-management: service users’ experiences from everyday life

COPD transitions in health and self-management: service users’ experiences from everyday life