‘It's a double whammy’: A qualitative study of illness uncertainty in individuals with Parkinson's disease in the context of COVID-19

Simpson, Jane; Zarotti, Nicolò; Varey, Sandra; Anestis, Eleftherios; Holland, Carol; Murray, Craig; Eccles, Fiona

doi:10.1177/17423953211043101

Cited by 16 publications

(13 citation statements)

References 51 publications

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“…Illness uncertainty and its impact on patients has been described in other conditions. [15][16][17] Mishel described the "Uncertainty in Illness Theory", a framework for how patients handle uncertainty surrounding a health condition. 18 According to this theory, through multiple steps and influences, patients make an appraisal of the uncertainty as either a danger or an opportunity to which they employ coping mechanisms and eventually adapt.…”

Section: Discussionmentioning

confidence: 99%

Experiences and insights from partners of individuals with single-ventricle CHD: a pilot qualitative research study

Well

Lamari-Fisher²,

Taylor³

et al. 2022

Cardiol Young

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Introduction: With advances in care, an increasing number of individuals with single-ventricle CHD are surviving into adulthood. Partners of individuals with chronic illness have unique experiences and challenges. The goal of this pilot qualitative research study was to explore the lived experiences of partners of individuals with single-ventricle CHD. Methods: Partners of patients ≥18 years with single-ventricle CHD were recruited and participated in Experience Group sessions and 1:1 interviews. Experience Group sessions are lightly moderated groups that bring together individuals with similar circumstances to discuss their lived experiences, centreing them as the experts. Formal inductive qualitative coding was performed to identify salient themes. Results: Six partners of patients participated. Of these, four were males and four were married; all were partners of someone of the opposite sex. Themes identified included uncertainty about their partners’ future health and mortality, becoming a lay CHD specialist, balancing multiple roles, and providing positivity and optimism. Over time, they took on a role as advocates for their partners and as repositories of medical history to help navigate the health system. Despite the uncertainties, participants described championing positivity and optimism for the future. Conclusions: In this first-of-its-kind pilot study, partners of individuals with single-ventricle CHD expressed unique challenges and experiences in their lives. There is a tacit need to design strategies to help partners cope with those challenges. Further larger-scale research is required to better understand the experiences of this unique population.

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Section: Discussionmentioning

confidence: 99%

Experiences and insights from partners of individuals with single-ventricle CHD: a pilot qualitative research study

Well

Lamari-Fisher²,

Taylor³

et al. 2022

Cardiol Young

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“…PD patients can present a progressive decline in independence and quality of life, which is similar to that observed in frail older adults; however, frailty and PD are clinically distinct entities with a differing underlying pathophysiology [ 56 , 57 ]. The pandemic aggression has precipitated both the incidence of Parkinsonian symptoms and the progression to PD and frailty [ 61 , 62 ]. This allows us to hypothesize an interacting triad toward vulnerability, disability and chronicity of disease.…”

Section: Physiological Aging: From Frailty To Susceptibility To Neuro...mentioning

confidence: 99%

Parkinson’s Disease, SARS-CoV-2, and Frailty: Is There a Vicious Cycle Related to Hypovitaminosis D?

et al. 2023

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The literature has long established the association between aging and frailty, with emerging evidence pointing to a relationship between frailty and SARS-CoV-2 contagion. The possible neurological consequences of SARS-CoV-2 infection, associated with physical and cognitive frailty, could lead to a worsening of Parkinson’s disease (PD) in infected patients or—more rarely—to an increase in the Parkinsonian symptomatology. A possible link between those clinical pictures could be identified in vitamin D deficiency, while the whole process would appear to be associated with alterations in the microbiota–intestine–brain axis that fall within the α-Synuclein Origin site and Connectome (SOC) model, and allow for the identification of a body-first PD and a brain-first PD. The model of care for this condition must consider intrinsic and extrinsic variables so that care by a multidisciplinary team can be successfully predicted. A multidimensional screening protocol specifically designed to identify people at risk or in the early stages of the disease should begin with the investigation of indices of frailty and microbiota–intestine–brain axis alterations, with a new focus on cases of hypovitaminosis D.

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“…For example, they can occur before the onset of movement di culties [5] and be related to the di culties and challenges encountered in growing up in a family where perhaps a number of relatives (including a parent) have HD [6]. As with many neurodegenerative conditions [7], psychological di culties can also emerge through the experience of living with the challenges and uncertainties of a chronic health condition in a society where stigmatising attitudes to illness are still evident (e.g., [8,9]).…”

Section: Introductionmentioning

confidence: 99%

Guided self-help for anxiety among Huntington’s disease gene expansion carriers (GUIDE-HD) compared to treatment as usual: a randomised controlled feasibility trial

Dale

Eccles

Melvin

et al. 2023

Preprint

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Background: Huntington’s disease (HD) is an adult-onset genetic neurodegenerative condition, involving cognitive decline, motor impairments and emotional difficulties. Anxiety affects up to 71% of HD gene expansion carriers (i.e., those with the version of the gene that causes HD) and can negatively affect quality of life, worsen other HD symptoms, and increase suicide risk. Therefore, helping people with their anxiety should be a clinical priority. A significant evidence base now exists for low-cost talking therapies for anxiety, such as guided self-help, and with people with other neurodegenerative diseases (e.g., Parkinson’s disease). However, this type of intervention has not been specifically assessed for HD gene expansion carriers. Methods: This protocol describes an exploratory randomised controlled feasibility study of a psychological intervention for anxiety. The 10 session guided self-help intervention is based on a blend of second and third wave cognitive behavioural models of anxiety and adapted to meet the specific needs of an HD population. This study will compare guided self-help (GSH) with treatment as usual (TAU), with 15 HD gene expansion carriers randomly allocated to each group. Participants will be recruited across the East Midlands region in the UK. Quantitative data will be collected pre intervention, immediately post intervention, three-month post intervention and six-month post intervention; qualitative data will be collected at one month post intervention. The data will be analysed to assess whether the current intervention and study design meets pre-determined criteria that would indicate feasibility to progress to a larger randomised controlled trial. HD carers will also be invited for interview within 1-month post-intervention and these data will be analysed qualitatively. Discussion Given the lack of evidenced interventions to date to support the wellbeing of people with the expanded Huntington’s gene, this study will assess the feasibility of progressing this particular intervention to a full trial. To try and increase the acceptability of the intervention, a number of stakeholders, including those affected by HD and in caring roles, have been fundamental to the creation of the intervention (e.g., therapy manual, planned therapy process) to date. Trial registration Trial ID: ISRCTN47330596 Date registered: 28/09/2022 Link: https://www.isrctn.com/ISRCTN47330596

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‘It's a double whammy’: A qualitative study of illness uncertainty in individuals with Parkinson's disease in the context of COVID-19

Cited by 16 publications

References 51 publications

Experiences and insights from partners of individuals with single-ventricle CHD: a pilot qualitative research study

Experiences and insights from partners of individuals with single-ventricle CHD: a pilot qualitative research study

Parkinson’s Disease, SARS-CoV-2, and Frailty: Is There a Vicious Cycle Related to Hypovitaminosis D?

Guided self-help for anxiety among Huntington’s disease gene expansion carriers (GUIDE-HD) compared to treatment as usual: a randomised controlled feasibility trial

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