D Nimmons1, L Hatter1, N Davies1,2, E L Sampson2, K Walters1, A Schrag3. 1. Research Department of Primary Care and Population Health, Centre for Ageing and Population Studies, UCL, London, UK. 2. Division of Psychiatry, Marie Curie Palliative Care Research Department, Centre for Dementia Palliative Care Research, UCL, London, UK. 3. Department of Clinical and Movement Neurosciences, Queen Square Institute of Neurology, UCL, London, UK.
Abstract
BACKGROUND AND PURPOSE: Advance care planning allows people to plan for their future care needs and can include medical, psychological and social aspects. However, little is known on the use, experience of and attitudes towards advance care planning in patients with parkinsonian disorders, their family carers and healthcare professionals. METHODS: A systematic search of online databases was conducted in April 2019 using a narrative synthesis approach with thematic analysis and tabulation to synthesize the findings. RESULTS: In all, 507 articles were identified and 27 were included. There were five overarching themes: (i) what is involved in advance care planning discussions, (ii) when and how advance care planning discussions are initiated, (iii) barriers to advance care planning, (iv) the role of healthcare professionals and (v) the role of the family carer. This evidence was used to highlight eight effective components to support optimal advance care planning in parkinsonian disorders: advance care planning discussions should be individualized in content, timing and approach; patients should be invited to discuss advance care planning early and regularly; palliative care services should be introduced early; a skilled professional should deliver advance care planning; support to family carers should be offered in the advance care planning process; healthcare professionals should be educated on parkinsonian disorders and palliative care; advance care planning should be clearly documented and shared with relevant services; and healthcare professionals should be enabled to conduct effective advance care planning. CONCLUSIONS: These components can inform best practice in advance care planning in patients with parkinsonian disorders.
BACKGROUND AND PURPOSE: Advance care planning allows people to plan for their future care needs and can include medical, psychological and social aspects. However, little is known on the use, experience of and attitudes towards advance care planning in patients with parkinsonian disorders, their family carers and healthcare professionals. METHODS: A systematic search of online databases was conducted in April 2019 using a narrative synthesis approach with thematic analysis and tabulation to synthesize the findings. RESULTS: In all, 507 articles were identified and 27 were included. There were five overarching themes: (i) what is involved in advance care planning discussions, (ii) when and how advance care planning discussions are initiated, (iii) barriers to advance care planning, (iv) the role of healthcare professionals and (v) the role of the family carer. This evidence was used to highlight eight effective components to support optimal advance care planning in parkinsonian disorders: advance care planning discussions should be individualized in content, timing and approach; patients should be invited to discuss advance care planning early and regularly; palliative care services should be introduced early; a skilled professional should deliver advance care planning; support to family carers should be offered in the advance care planning process; healthcare professionals should be educated on parkinsonian disorders and palliative care; advance care planning should be clearly documented and shared with relevant services; and healthcare professionals should be enabled to conduct effective advance care planning. CONCLUSIONS: These components can inform best practice in advance care planning in patients with parkinsonian disorders.
Authors: Danielle Nimmons; Megan Armstrong; Jennifer Pigott; Kate Walters; Anette Schrag; Della Ogunleye; Wesley Dowridge; Joy Read; Nathan Davies Journal: Digit Health Date: 2022-05-26
Authors: Herma Lennaerts-Kats; Anne Ebenau; Jenny T van der Steen; Marten Munneke; Bastiaan R Bloem; Kris C P Vissers; Marjan J Meinders; Marieke M Groot Journal: J Parkinsons Dis Date: 2022 Impact factor: 5.568