Experiences of advance care planning in Parkinson's disease and atypical parkinsonian disorders: a mixed methods systematic review

Nimmons, Danielle; Hatter, Lee; Davies, Nathan; Sampson, Elizabeth L; Walters, Kate; Schrag, Anette

doi:10.1111/ene.14424

Cited by 17 publications

(14 citation statements)

References 47 publications

(237 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Most participants and family carers wanted to focus on living in the present and did not want to discuss the future or access information via digital health, due to fear of how their Parkinson's would progress. This is supported by findings of a recent systematic review conducted by our team, 36 which found many people with Parkinson's do not want to discuss advance care planning early and the right time depended on patient factors such as their values, goals and care needs. One recommendation was for healthcare professionals to invite people to discuss planning ahead early and regularly so that it does not happen during a crisis.…”

Section: Discussionsupporting

confidence: 61%

Exploring the experiences of people and family carers from under-represented groups in self-managing Parkinson's disease and their use of digital health to do this

Nimmons¹,

Armstrong²,

Pigott³

et al. 2022

DIGITAL HEALTH

Self Cite

View full text Add to dashboard Cite

Introduction Digital health is thought to enable people to better manage chronic conditions, such as Parkinson's. However, little is known about how people from under-represented groups with chronic conditions use digital health to self-manage. Objective The objective of our study was to explore the experiences of people and family carers from under-represented groups in self-managing Parkinson's, including their use of digital health to do this. Methods Semi-structured interviews (n = 18, including four dyadic) were conducted remotely, with 16 people with Parkinson's and six family carers in 2020–2021. Participants were purposively sampled from under-represented groups: belong to an ethnic minority, or having significant physical or sensory impairment. Interviews were audio-recorded, transcribed and analysed using thematic analysis. Results Three main themes of importance were developed: ‘self-management support’, ‘digital health use to support self-management’ and ‘identity, attitudes and characteristics’. Participants received medical, psychological, social and practical self-management support. Some participants used digital health resources, e.g., Parkinson's UK website. Digital literacy was the biggest barrier to using digital health, regardless of background, often dependant on previous occupation and confidence. Few ethnic minority participants thought race or culture alters self-management ability and most believed there was no need for digital health interventions to be tailored to an individual's race or culture. Some felt inclusivity was important in terms of diverse images of people. A range of considerations were identified to optimise digital health, such as assistive equipment for people with sensory impairment. Conclusions Barriers to using digital health for self-management were primarily dependent on personal factors including digital literacy and attitudes but rarely race or culture. We recommend the optimisation of digital health interventions by providing assistive technology at low cost, and visual inclusiveness should be promoted by including images of people from diverse backgrounds.

show abstract

Section: Discussionsupporting

confidence: 61%

Exploring the experiences of people and family carers from under-represented groups in self-managing Parkinson's disease and their use of digital health to do this

Nimmons¹,

Armstrong²,

Pigott³

et al. 2022

DIGITAL HEALTH

Self Cite

View full text Add to dashboard Cite

show abstract

“…This is particularly true for patients with cognitive impairment, who may have difficulty in communication their person’s goals or preferences [ 66 ]. Furthermore, ACP can be helpful in developing a more patient-centered care plan based on the personal goals of a patient and family caregiver [ 67 ]. By now, ACP has been recognized as helpful for people with PD to declare their wishes on future care with regard to potentially occurring situations [ 56, 67–71 ], although its effectiveness has not been shown in randomized clinical trials.…”

Section: Discussionmentioning

confidence: 99%

“No One Can Tell Me How Parkinson’s Disease Will Unfold”: A Mixed Methods Case Study on Palliative Care for People with Parkinson’s Disease and Their Family Caregivers

Lennaerts‐Kats

Ebenau

Steen

et al. 2022

JPD

View full text Add to dashboard Cite

Background: Palliative care for persons with Parkinson’s disease (PD) is developing. However, little is known about the experiences of patients with PD in the palliative phase and of their family caregivers. Objective: To explore needs of patients with PD in the palliative phase and of their family caregivers. Methods: A mixed methods case study design. Health care professionals included patients for whom the answer on the question “Would you be surprised if this patient died in the next 12 months?” was negative. At baseline, and after six and twelve months, we conducted semi-structured interviews with patients and caregivers. Participants completed questionnaires on quality of life, disease burden, caregiver burden, grief, and positive aspects of caregiving. We analyzed quantitative data using descriptive statistics, while we used thematic analysis for qualitative data. Results: Ten patients and eight family caregivers participated, of whom five patients died during the study period. While the quantitative data reflected a moderate disease burden, the qualitative findings indicated a higher disease burden. Longitudinal results showed small differences and changes in time. Patients reported a diverse range of symptoms, such as fatigue, immobility, cognitive changes, and hallucinations, which had a tremendous impact on their lives. Nevertheless, they rated their overall quality of life as moderate to positive. Family caregivers gradually learned to cope with difficult situations such delirium, fluctuations in functioning and hallucinations. They had great expertise in caring for the person with PD but did not automatically share this with health care professionals. Patients sensed a lack of time to discuss their complex needs with clinicians. Furthermore, palliative care was rarely discussed, and none of these patients had been referred to specialist palliative care services. Conclusion: Patients with PD experienced many difficulties in daily living. Patients seems to adapt to living with PD as they rated their quality of life as moderate to positive. Family caregivers became experts in the care for their loved one, but often learned on their own. An early implementation of the palliative care approach can be beneficial in addressing the needs of patients with PD and their family caregivers.

show abstract

“…For example, one might consider informing PD patients about the diagnosis and consequences of the disease in a two-tiered appointment similar to the process in oncology and ALS since this was shown to facilitate information uptake by the patients in the latter patient groups ( 8 ). Communication skills training for HCPs may be crucial to optimize these conversations ( 10 ). Additionally, by regularly actively inquiring the need for information by the HCPs regarding prespecified topics, tailored information in both oral and written form can be supplied to PD patients.…”

Section: Discussionmentioning

confidence: 99%

“…The introduction of advance care planning is possible alongside curative therapies and at any time during the disease course, sometimes even directly after communication of the diagnosis ( 8 , 9 ). However, in PD, instead of being integrated early, research suggests that, in current practice, ACP generally is not initiated before the progression of symptoms, cognitive decline, or the terminal phase of PD ( 10 ).…”

Section: Introductionmentioning

confidence: 99%

Advanced Care Planning in Parkinson's Disease: In-depth Interviews With Patients on Experiences and Needs

et al. 2021

View full text Add to dashboard Cite

Introduction: Advance care planning (ACP) is an iterative process of discussing the needs, wishes, and preferences of patients regarding disease-specific and end-of-life issues. There is ample evidence that ACP improves the quality of life and promotes the autonomy of patients with cancer and motor neuron disease who have a high disease burden and shortened life expectancy. In Parkinson's disease (PD) though, knowledge about the experiences and preferences of patients regarding ACP is scarce, despite the major disease burden associated with PD.Aim: This study aims to explore the experiences, needs, and preferences of PD patients regarding the content and timing of ACP.Methods: In-depth interviews were conducted with a purposively selected sample of patients diagnosed with PD. Using a semi-structured topic list, the participants were asked about their prospects for a future living with PD and with whom they wanted to discuss this. Qualitative analysis was performed in parallel with data collection using a data-driven constant comparative approach. The transcribed interviews were coded and analyzed by two researchers using MAXQDA software.Results: Of all 20 patients (13 males; age 47–82; disease duration 1–27 years), most expressed a wish to talk about ACP with a healthcare provider, enabling them to anticipate the uncertain future. The majority of patients preferred their healthcare provider to initiate the discussion on ACP, preferably at an early stage of the disease. Nearly all patients expressed the wish to receive more information regarding the long-term impact of PD, although, the preferred timing varied between patients. They also perceived that their neurologist was primarily focused on medication and had little time to address their need for a more holistic approach toward living with PD.Conclusion: Our results suggest that PD patients are in need of discussing ACP with their healthcare provider (HCP), even in the early stages of the disease. In addition, PD patients perceive a lack of information on their disease course and miss guidance on available supportive care. We recommend HCPs to inquire the information requirements and preferences of patients regarding ACP regularly, starting soon after diagnosis.

show abstract

Experiences of advance care planning in Parkinson's disease and atypical parkinsonian disorders: a mixed methods systematic review

Cited by 17 publications

References 47 publications

Exploring the experiences of people and family carers from under-represented groups in self-managing Parkinson's disease and their use of digital health to do this

Exploring the experiences of people and family carers from under-represented groups in self-managing Parkinson's disease and their use of digital health to do this

“No One Can Tell Me How Parkinson’s Disease Will Unfold”: A Mixed Methods Case Study on Palliative Care for People with Parkinson’s Disease and Their Family Caregivers

Advanced Care Planning in Parkinson's Disease: In-depth Interviews With Patients on Experiences and Needs

Contact Info

Product

Resources

About