Illness identity in young adults with refractory epilepsy

Luyckx, Koen; Oris, Leen; Raymaekers, Koen; Rassart, Jessica; Moons, Philip; Verdyck, Ludo; Mijnster, Teus; Mark, Ruth E.

doi:10.1016/j.yebeh.2017.12.036

Cited by 24 publications

(67 citation statements)

References 66 publications

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“…The identified trajectory classes did not differ from each other in terms of sex, which is in line with preceding studies (Andonian et al, 2020;Luyckx et al, 2018;Oris et al, 2016Oris et al, , 2018. In the present study, patients with Consistently low engulfment scores were younger than the other patients, and patients with…”

Section: Discussionsupporting

confidence: 92%

“…In the present study, patients with C onsistently low engulfment scores were younger than the other patients, and patients with Chronically high rejection scores were older compared with the other rejection classes. Previous literature showed conflicting results about the association between age and illness identity dimensions (Andonian et al, 2020; Luyckx et al, 2018; Oris et al, 2016, 2018). In our sample, disease complexity was found to be significantly associated with classes of engulfment and enrichment, with complex patients situated in higher levels of engulfment and enrichment over time.…”

Section: Discussionmentioning

confidence: 95%

Section: Backg Rou N Dmentioning

confidence: 99%

“…Illness identity has been investigated in several patient populations during the past years, that is, young adults with refractory epilepsy (Luyckx et al, 2018), adolescents with celiac disease (Meyer & Lamash, 2021), youth with type 1 diabetes (Oris et al, 2016; Raymaekers et al, 2020), patients with systemic diseases (Oris et al, 2016) and adults with CHD (Andonian et al, 2020; Oris et al, 2016). In all these populations, associations between the four illness identity dimensions and clinical parameters, PROs and healthcare utilization were found, indicating that illness identity could be a valuable concept that has the potential to support clinical practice.…”

Section: Introductionmentioning

confidence: 99%

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Illness identity in adults with congenital heart disease: Longitudinal trajectories and associations with patient‐reported outcomes and healthcare use

Bulck

Goossens

Apers

et al. 2021

Journal of Advanced Nursing

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Aims The aims of this study were to investigate the development of illness identity, the degree to which the disease is integrated into one's identity, by identifying trajectory classes in adults with congenital heart disease (CHD) and to describe these classes in terms of age, sex, disease complexity, patient‐reported outcomes (PROs) and healthcare use. Design This three‐wave observational cohort study was carried from 2013 till 2015 and includes 276 adults (median age: 34 years; 54% men) with CHD. Methods Illness identity entails four dimensions: engulfment, rejection, acceptance and enrichment. PROs included perceived health status, quality of life and psychological distress. Latent class growth analysis, analysis of variance, Poisson regression and negative binomial regression analyses were performed. Results Illness identity was relatively stable over time. The identified classes were meaningfully different in terms of age, disease complexity, PROs and healthcare use. Patients who did not reject their disease, patients who were not overwhelmed or patients who accepted their disease over time reported better health status and quality of life and less psychological distress. Less hospitalizations and visits to the general practitioner and medical specialist were reported by patients who were not overwhelmed or patients who accepted their disease over time. Patients with low rejection and high enrichment scores over time reported more visits at the general practitioner. Conclusion These findings indicate that illness identity should be taken into account when trying to understand and optimize PROs and healthcare use of adults with CHD. Impact This study scrutinizes the development and clinical meaningfulness of illness identity measured over time for adults with CHD. Illness identity was found to be stable over time. Moreover, the illness identity trajectories differed in terms of PROs and healthcare use, showing that measuring and intervening upon illness identity could be a potential pathway to optimize PROs and healthcare use.

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Section: Discussionsupporting

confidence: 92%

Section: Discussionmentioning

confidence: 95%

Section: Backg Rou N Dmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Illness identity in adults with congenital heart disease: Longitudinal trajectories and associations with patient‐reported outcomes and healthcare use

Bulck

Goossens

Apers

et al. 2021

Journal of Advanced Nursing

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“…Nevertheless, research examining adult populations also indicates that the impact of epilepsy on identity can negatively affect health-related quality of life (HRQOL) [9]. Furthermore, Collings [10] noted how PWE rated their current self less positively than their anticipated self without epilepsy.…”

Section: Introductionmentioning

confidence: 99%

Epilepsy, identity, and the experience of the body

Kilinc

Campbell

Guy

et al. 2018

Epilepsy & Behavior

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Living with a chronic condition can challenge a person's identity, yet there is a paucity of research exploring this experience for people with epilepsy and particularly for those diagnosed in adulthood. Consequently, through an interpretative phenomenological approach, the current study aimed to explore what the experience of adult-onset epilepsy meant for a person's identity. 39 people with adult-onset epilepsy from across the UK, took part in up to two semi-structured interviews. A modified form of interpretative phenomenological analysis was conducted and identified three themes: 1) disarming the impact of seizures considered strategies used to control seizure occurrence and regain a sense of control over the body; 2) distinguishing the self from the body highlighted participants' attempts to separate their sense of self from the unpredictability of their bodies; 3) separating epilepsy from themselves demonstrated how participants externalized epilepsy from themselves in order to reject it as part of their identity. The findings highlighted that living with adult-onset epilepsy can challenge a person's sense of self and trust in their body, resulting in the adoption of various strategies to manage the threat to their identity. As such, practitioners must pay attention to the impact that adult-onset epilepsy can have on a person's identity and faith in their body.

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