Living with advanced Parkinson’s disease: a constant struggle with unpredictability

Haahr, Anita; Kirkevold, Marit; Hall, Elisabeth O.C.; Østergaard, Karen

doi:10.1111/j.1365-2648.2010.05459.x

Cited by 141 publications

(178 citation statements)

References 45 publications

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“…Qualitative research also explores the context of participants’ subjective experience. A hermeneutic phenomenological approach, informed by the philosophical constructs of Heidegger [27] Gadamer [28, 29] and Van Manen [30–32] was undertaken to study the complexities of a challenging life world [33]. Hermeneutic phenomenology is concerned with the study of lifeworld or human experience as we live it [30–33].…”

Section: Methodsmentioning

confidence: 99%

Parents’ experiences of living with, and caring for children, adolescents and young adults with Mucopolysaccharidosis (MPS)

Somanadhan

Larkin

2016

Orphanet J Rare Dis

198

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BackgroundMany rare diseases of childhood are life-threatening and chronically debilitating, so living with a rare disease is an on-going challenge for patients and their families. MPS is one of a range of rare inherited metabolic disorders (IMDs) that come under category 3 of life-limiting conditions, where there is no curative treatment available at present. Although the study of rare diseases is increasingly novel, and of clinical importance to the population, the lack of empirical data in the field to support policy and strategy development is a compelling argument for further research to be sought.MethodsThis qualitative hermeneutic phenomenological study explored and interpreted Irish parents’ experiences of living with and caring for children, adolescents and young adults with MPS and the impact of these diseases on their day to day life. A purposively selected sample of parents’ attending the Irish National Centre for Inherited Metabolic Disorders was invited to participate in serial in-depth interviews.ResultsA total of eight parents’ (n = 8) of children with a range of MPS disorders aged from 6 months to 22 years (MPS I Hurler syndrome, Scheie syndrome), MPS II (Hunter syndrome), MPS III (Sanfilipo syndrome) and MPS VI (Maroteaux-Lamy syndrome) were interviewed at three time points over a 17 month period. The main themes identified during data analysis were described as living with MPS, living with a genetic rare disease, the stigma of a rare condition, MPS as encompassing multiple diseases, Unknown future, hospital vs. home, experience of waiting, a tough road ahead, and things in their day-to-day life with MPS. They spoke of their child’s Quality of Life (QoL), their healthy children’s wellbeing, and for some, the impact on their own physical and psychological wellbeing. They also reflected on issues of stigmatisation and isolation in their experience of living with a child with a rare disorder.ConclusionThis study’s findings reflect the wider literature on the impact of rare diseases, which have also indicated how caring for someone with MPS, a condition that is chronic, progressive and degenerative can impact on all dimensions of the family’s life. Analysis of the findings using a hemenutic pheomenology perspecitve suggest that parents of children with MPS experience multiple cyclical movements across all five human lived existential experience, and they gradually develop ways to incorporate MPS in their day to day life. It was also evident that all the carers in this study experienced a range of uncertainties, with parents using terms such as ‘no man’s land’ and ‘future is unknown’ to describe their world.

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Section: Methodsmentioning

confidence: 99%

Parents’ experiences of living with, and caring for children, adolescents and young adults with Mucopolysaccharidosis (MPS)

Somanadhan

Larkin

2016

Orphanet J Rare Dis

198

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“…As well as monitoring the impact of changes to symptoms on community participation, it can also capture the broader impact of the treatment itself. Qualitative investigation of the impact of PD and its treatments has indicated, for example, that medications requiring a strictly timed regime can result in surrendering of valued activities and roles because leaving the house needs to be arranged around medication requirements [25]. Also, intensive rehabilitation programs requiring frequent hospital-based attendance may affect patterns of Lifespace.…”

Section: Introductionmentioning

confidence: 99%

Measuring the Lifespace of People With Parkinson’s Disease Using Smartphones: Proof of Principle

Liddle¹,

Ireland²,

McBride³

et al. 2014

JMIR Mhealth Uhealth

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BackgroundLifespace is a multidimensional construct that describes the geographic area in which a person lives and conducts their activities, and reflects mobility, health, and well-being. Traditionally, it has been measured by asking older people to self-report the length and frequency of trips taken and assistance required. Global Positioning System (GPS) sensors on smartphones have been used to measure Lifespace of older people, but not with people with Parkinson’s disease (PD).ObjectiveThe objective of this study was to investigate whether GPS data collected via smartphones could be used to indicate the Lifespace of people with PD.MethodsThe dataset was supplied via the Michael J Fox Foundation Data Challenge and included 9 people with PD and 7 approximately matched controls. Participants carried smartphones with GPS sensors over two months. Data analysis compared the PD group and the control group. The impact of symptom severity on Lifespace was also investigated.ResultsVisualization methods for comparing Lifespace were developed including scatterplots and heatmaps. Lifespace metrics for comparison included average daily distance, percentage of time spent at home, and number of trips into the community. There were no significant differences between the PD and the control groups on Lifespace metrics. Visual representations of Lifespace were organized based on the self-reported severity of symptoms, suggesting a trend of decreasing Lifespace with increasing PD symptoms.ConclusionsLifespace measured by GPS-enabled smartphones may be a useful concept to measure the progression of PD and the impact of various therapies and rehabilitation programs. Directions for future use of GPS-based Lifespace are provided.

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“…Other qualitative studies showed (1) the severity of the disease and the functional status of the patient [19], (2) depression, disability, motor impairment, postural instability and cognitive impairment [20] and (3) nocturnal sleep disturbance, together with depressive symptoms and severity of motor symptoms, highly influence the QoL of patients [21]. Other qualitative studies have shown that the unpredictability of PD [22], the role of partners [23] and mental and psychosocial symptoms [24] highly influence the QoL of people with PD.…”

Section: Introductionmentioning

confidence: 99%

Quality-of-life of patients with Parkinson’s disease

Dauwerse¹,

Hendrikx²,

Schipper³

et al. 2014

Brain Injury

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Living with advanced Parkinson’s disease: a constant struggle with unpredictability

Abstract: Parkinson's disease leads to profound bodily restrictions. Living with an unpredictable body affects all aspects of life, and nurses need to be aware of the impact the disease has on the entire lifeworld, and how this may affect the way treatment is perceived.

Cited by 141 publications

References 45 publications

Parents’ experiences of living with, and caring for children, adolescents and young adults with Mucopolysaccharidosis (MPS)

Parents’ experiences of living with, and caring for children, adolescents and young adults with Mucopolysaccharidosis (MPS)

Measuring the Lifespace of People With Parkinson’s Disease Using Smartphones: Proof of Principle

Quality-of-life of patients with Parkinson’s disease

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