‘Being in it together’: living with a partner receiving deep brain stimulation for advanced Parkinson’s disease – a hermeneutic phenomenological study

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

doi:10.1111/j.1365-2648.2012.06012.x

Cited by 50 publications

(112 citation statements)

References 28 publications

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“…The findings of this study highlight the centrality of occupation within individual and family member experiences of DBS for PD. The concept of broader treatment impacts, beyond symptom relief and motor improvement, has previously been identified in relation to DBS for PD (Haahr et al ., , , ; Hariz et al ., ). Similarly, recent literature has identified DBS can result in transitioning understandings of identity (Haahr et al .).…”

Section: Discussionmentioning

confidence: 99%

“…Medical management brings with it new routines for both the individual with PD and their carers. There develops an increasing focus on regularly timed medication in daily life and the need for rigid time keeping to maintain bodily control (Haahr, Kirkevold, Hall & Østergaard, ). The unpredictability of symptom fluctuations, accompanied by pain and changed body sensation and expression, affects functional tasks but also concepts of identity, confidence and connectedness (Haahr et al .).…”

Section: Introductionmentioning

confidence: 99%

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Understanding the lived experiences of Parkinson's disease and deep brain stimulation (DBS) through occupational changes

Liddle

Phillips

Gustafsson

et al. 2017

Aus Occup Therapy J

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Background: Deep brain stimulation (DBS), a surgically based treatment for people living with Parkinson's disease (PD), can result in a significant improvement of motor symptoms. However, the broader impact of DBS and the changes it creates are not well understood. Greater understanding of the experiences and needs related to DBS would enable development of relevant outcome measures and supports. Objectives: To explore the lived experiences of people undergoing DBS for Parkinson's disease. Methods: A descriptive phenomenological study was undertaken exploring experiences, perspectives and outcomes with key stakeholders. Semi-structured, audiotaped interviews were undertaken with people with PD who have had DBS, their family members and health professionals across four states and territories in Australia. Results: Perspectives and experiences of 14 people with PD undergoing DBS, 10 family members and 11 health professionals were analysed. Occupations emerged as a key aspect throughout the DBS experience. Two major themes captured the role of occupation in relation to DBS: Occupations as a barometer, where occupational experiences and performances shaped people's understanding of their condition, the impact of treatments and their overall adjustment; and Shifting occupational identity where the life transition of DBS altered the occupational experiences of relationships, volition, roles and responsibilities of people with PD and their family members. Conclusion: Occupational experiences and changes served as an important way for people with PD and their families to understand and communicate their experiences of PD and related treatments. There is an identified need for outcome measures and clinical education and interventions to reflect this.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Understanding the lived experiences of Parkinson's disease and deep brain stimulation (DBS) through occupational changes

Liddle

Phillips

Gustafsson

et al. 2017

Aus Occup Therapy J

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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: 98%

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

Dauwerse¹,

Hendrikx²,

Schipper³

et al. 2014

Brain Injury

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“…In PD, the process of psychosocial adaptation to the illness implies patients withstanding various changes to their social lives and as in their bodies (Fleming, Tolson, & Schartau, ; Haahr, Kirkevold, Hall, & Østergaard, , ; Stanley‐Hermanns & Engebretson ). Family carers, whose lives are influenced by the experience of their family member with PD, also find it difficult to adapt, due to the feeling of uncertainty to which the degenerative nature of PD gives rise and their lack of preparation for caring for a person with PD (Haahr, Kirkevold, Hall, & Østergaard, ; Portillo et al., ; Tan, Williams, & Morris, ). However, promoting the development of psychosocial adaptation to a LTC is positive, because this process can help the person adjust their activities and expectations to the new situation (Ambrosio et al., ; De Ridder, Geenen, Kuijer, & Van Middendorp, ; Stanton, Revenson, & Tennen, ).…”

Section: Introductionmentioning

confidence: 99%

Core elements to understand and improve coping with Parkinson's disease in patients and family carers: A focus group study

Navarta‐Sánchez

Caparrós

Riverol

et al. 2017

Journal of Advanced Nursing

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Aims The aim of this study were: (1) To explore the meaning that coping with Parkinson's disease has for patients and family carers; (2) To suggest the components of an intervention focused on enhancing their coping with the disease. Background Adapting to Parkinson's disease involves going through many difficult changes; however, it may improve quality of life in patients and family carers. One of the key aspects for facilitating the psychosocial adjustment to Parkinson's disease is the strengthening of coping skills. Design A sequential explanatory mixed methods study was carried out. Findings from the qualitative phase are presented. Methods Data were collected in May 2014 through three focus groups: one of people with Parkinson's disease (n = 9), one of family carers (n = 7) and one of healthcare professionals (n = 5). All focus groups were digitally recorded and transcribed verbatim and content analysis was independently carried out by two researchers. Findings The participants coincided in highlighting that coping with Parkinson's disease helped the patient and the family carer in their search for balance; and it implied a transformation in their lives. To aid the process of coping with Parkinson's disease, a multifaceted intervention is proposed. Conclusion Coping with Parkinson's disease is a complex process for both patients and family carers and it should therefore be considered a standard service in healthcare policies aimed at this group. The proposed intervention constitutes a nursing tool which has great potential to improve the quality of life in Parkinson's disease and in other long‐term conditions.

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‘Being in it together’: living with a partner receiving deep brain stimulation for advanced Parkinson’s disease – a hermeneutic phenomenological study

Cited by 50 publications

References 28 publications

Understanding the lived experiences of Parkinson's disease and deep brain stimulation (DBS) through occupational changes

Understanding the lived experiences of Parkinson's disease and deep brain stimulation (DBS) through occupational changes

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

Core elements to understand and improve coping with Parkinson's disease in patients and family carers: A focus group study

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