<i>Sharing our story</i> individualized and triadic nurse meetings support couples adjustment to living with deep brain stimulation for Parkinson’s disease

Haahr, Anita; Norlyk, Annelise; Hall, Elisabeth O.C.; Hansen, Kirsten; Østergaard, Karen; Kirkevold, Marit

doi:10.1080/17482631.2020.1748361

Cited by 9 publications

(13 citation statements)

References 41 publications

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“…Access to a multidisciplinary team (e.g., PD nurse, general practitioner, social worker, psychologist, or psychiatrist) gives patients and families increased opportunities and time to discuss psychosocial issues and receive relevant support. Nurse specialists in particular are recommended as they can assist with device practicalities while assisting emotional adjustment (Haahr et al, 2020). They can also provide continuity of care across the patient’s wider illness and treatment trajectory (Eatough & Shaw, 2017; Vann-Ward et al, 2017).…”

Section: Discussionmentioning

confidence: 99%

“He’s Back so I’m Not Alone”: The Impact of Deep Brain Stimulation on Personality, Self, and Relationships in Parkinson’s Disease

et al. 2020

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Deep brain stimulation (DBS) for Parkinson’s disease successfully alleviates motor symptoms, but unanticipated changes in personality, self, and relationships can occur. Little is known about how these nonmotor outcomes affect patients and families. We prospectively examined the experience and meaning of DBS-related changes in personality and self for patients and caregivers. In-depth, semi-structured interviews were conducted with 22 participants (11 patient–caregiver dyads) before and 9 months after DBS and analyzed using thematic analysis. We identified three themes present prior to DBS that reflected a time of anticipation, while three themes present after DBS reflected a process of adjustment. Participants noted both positive and negative personality changes, with some, but not all, attributing them to the stimulation. The risk of stimulation-related personality change should be weighed against the procedure’s motor benefits and considered in the context of disease- and medication-related personality changes. Clinical implications including perioperative education and follow-up management are discussed.

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Section: Discussionmentioning

confidence: 99%

“He’s Back so I’m Not Alone”: The Impact of Deep Brain Stimulation on Personality, Self, and Relationships in Parkinson’s Disease

et al. 2020

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“…Simultaneously, patient characteristics that significantly changed after the psychoeducational program were a decrease in depression at both one and two years after surgery, and a lower anxiety score at one year after surgery [31]. A different study by Haahr et al developed a series of intervention-meetings with a specialized DBS nurse after surgery, resulting in significant improvements in adjusting to life after DBS for both patients and caregivers, as well as adjusting to coping with PD in general [32]. Similarly, a randomized controlled trial conducted in a general PD population showed that a patient-education programme administered to patients and caregivers alike yielded improvements in the domains 'psychosocial problems' and 'need for help' for the caregivers [33].…”

Section: Discussionmentioning

confidence: 99%

Effect of deep brain stimulation on caregivers of patients with Parkinson's disease: A systematic review

Hienen

Contarino

Middelkoop

et al. 2020

Parkinsonism & Related Disorders

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Background: Caregivers of patients with Parkinson's Disease (PD) often provide important support in the pre-and postoperative phase of Deep Brain Stimulation (DBS). DBS-associated changes of patient-functioning may affect caregiver wellbeing and impact the support system. Factors influencing caregiver-wellbeing under these circumstances are incompletely known. Objective: to systematically review studies of sufficient methodological quality on the impact of DBS on caregivers of PD patients. Methods: using PRISMA guidelines, major databases were searched up to May 2020. Five subcategories were identified: Caregiver burden, Caregiver cognitive and psychiatric functioning, Caregiver Quality of Life (QoL), Marital Satisfaction/Conflicts, and Caregiver Satisfaction. Quality was assessed using an in-house checklist. Results: 293 studies were identified; 12 were ultimately included. Caregiver burden, psychiatric and cognitive functioning and QoL remained relatively unchanged. Results on marital satisfaction/conflicts were contrasting: an increase in marital conflicts despite improved relationship quality scores DBS. Caregiver satisfaction with surgery was low with 50-58% of caregivers being disappointed with DBS outcomes. Concerning caregiver related factors: a higher preoperative caregiver QoL, younger age, lower scores on psychiatric rating scales, and more favourable preoperative relationship quality scores, were associated with better caregiver wellbeing. A favourable patient-profile includes younger age and age-at-onset, shorter disease duration, lower medication requirements, and lower scores on psychiatric rating scales. Conclusion: Although most patient-and caregiver-related subdomains remained unchanged after DBS, dissatisfaction among caregivers and marital problems may constitute a large risk for a well-functioning patient-caregiver dyad. Early recognition of potential problem situations may improve post-DBS care for both patients and caregivers.

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“…Through clinical assessment and training, nurses will be able to monitor ADL and instrumental activities of daily living (IADL) of people with PD, to assist them in promoting independence and performance of household tasks. Another common point, cited in studies (17,24) , but, to a lesser extent, was the nurses' ability to instruct people with PD to cope with stress and other psychological demands, as dyskinesias and motor complications can impact the activities or social interactions of people who experience the debilitating effects of the disease.…”

Section: Coordination For the Improvement Of Higher Education Personn...mentioning

confidence: 99%

“…Clinical evidence (13,14,17,18,(21)(22)(23)(24)28,30,(33)(34)(35)(36)(37)(38)(39)(40)(41)(42)(44)(45)(46)48,50,52) available on self-management education of the disease for people with PD and their care partners involves promoting health for family members and caregivers, providing family education (13,14,24,37,41,44,48,50) and safe sharing space for conversations on sensitive issues ranging from sexual issues of the couple after diagnosis to issues related to palliative care for patients at the end of life (39) .…”

Section: Education For Self-management Of the Disease For People With...mentioning

confidence: 99%

Parkinson’s disease in primary health care and nursing care: a scoping review

Nunes

Álvarez

Valcarenghi³

2022

Rev. esc. enferm. USP

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Objective: to map and analyze the scientific literature on nursing care aimed at people with Parkinson’s disease in Primary Health Care. Method: this is a scoping review using the Joanna Briggs Institute methodology, carried out between July and October 2020, and updated in November 2021 in six databases from nursing care and Parkinson’s disease descriptors, and their respective acronyms and synonyms in English, Portuguese and Spanish. Results: a total of 44 publications were included in this review, which identified as nursing care in Primary Care: assessment of motor and non-motor functions; management of activities of daily living and instrumental activities of daily living; disease self-management education for people with Parkinson’s and their care partners; supervised group approach; and personal factor management. Conclusion: Nursing care for people with Parkinson’s at the primary level essentially involves actions that include providing focused care at an individual and group level, encompassing clinical assessment, patient education, patient involvement in the social context of care, and developing positive relationships with family members and caregivers.

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Sharing our story individualized and triadic nurse meetings support couples adjustment to living with deep brain stimulation for Parkinson’s disease

Abstract: Kirkevold (2020) Sharingourstory individualized and triadic nurse meetings support couples adjustment to living with deep brain stimulation for Parkinson's disease,

Cited by 9 publications

References 41 publications

“He’s Back so I’m Not Alone”: The Impact of Deep Brain Stimulation on Personality, Self, and Relationships in Parkinson’s Disease

“He’s Back so I’m Not Alone”: The Impact of Deep Brain Stimulation on Personality, Self, and Relationships in Parkinson’s Disease

Effect of deep brain stimulation on caregivers of patients with Parkinson's disease: A systematic review

Parkinson’s disease in primary health care and nursing care: a scoping review

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