Hosie, A, Phillips, J, Lam, L, Kochovska, S, Noble, B, Brassil, M, Kurrle, S, Cumming, A, Caplan, GA, Chye, R, Ely, EW, Lawlor, PG, Bush, SH, Davis, JM, Lovell, M, Parr, C, Williams, S, Hauser, K, McArdle, S, Jacquier, K, Phillipson, C, Kuwahata, L, Kerfoot, J, Brown, L, Fazekas, B, Cheah, SL, Edwards, L, Green, A, Hunt, J, Attwood, R, Assen, T, Garcia, M, Wilcock, J & Agar, M 2020, 'A Multicomponent Nonpharmacological Intervention to Prevent Delirium for Hospitalized People with Advanced Cancer: A Phase II Cluster Randomized Waitlist Controlled Trial (The PRESERVE Pilot Study)', JOURNAL OF PALLIATIVE MEDICINE.View/Download from: Publisher's site
Kochovska, S, Garcia, MV, Bunn, F, Goodman, C, Luckett, T, Parker, D, Phillips, JL, Sampson, EL, van der Steen, JT & Agar, MR 2020, 'Components of palliative care interventions addressing the needs of people with dementia living in long-term care: A systematic review.', Palliative medicine, vol. 34, no. 4, pp. 454-492.View/Download from: Publisher's site
BACKGROUND:People with dementia requiring palliative care have multiple needs, which are amplified in long-term care settings. The European Association for Palliative Care White Paper offers recommendations for optimal palliative care in dementia integral for this population, providing useful guidance to inform interventions addressing their specific needs. AIM:The aim of this study is to describe the components of palliative care interventions for people with dementia in long-term care focusing on shared decision-making and examine their alignment to the European Association for Palliative Care domains of care. DESIGN:Systematic review with narrative synthesis (PROSPERO ID: CRD42018095649). DATA SOURCES:Four databases (MEDLINE, CINAHL, PsycINFO and CENTRAL) were searched (earliest records - July 2019) for peer-reviewed articles and protocols in English, reporting on palliative care interventions for people with dementia in long-term care, addressing European Association for Palliative Care Domains 2 (person-centred) or 3 (setting care goals) and ⩾1 other domain. RESULTS:Fifty-one papers were included, reporting on 32 studies. For each domain (1-10), there were interventions found aiming to address its goal, although no single intervention addressed all domains. Domain 7 (symptom management; n = 19), 6 (avoiding overly aggressive treatment; n = 18) and 10 (education; n = 17) were the most commonly addressed; Domain 5 (prognostication; n = 7) and 4 (continuity of care; n = 2) were the least addressed. CONCLUSION:Almost all domains were addressed across all interventions currently offered for this population to various degrees, but not within a singular intervention. Future research optimally needs to be theory driven when developing dementia-specific interventions at the end of life, with the European Association for Palliative Care domains serving as a foundation to inform the best care for this population.
Garcia, MV, Luckett, T, Johnson, M, Hutchinson, A, Lal, S & Phillips, JL 2019, 'The roles of dispositional coping style and social support in helping people with respiratory disease cope with a breathlessness crisis.', Journal of advanced nursing, vol. 75, no. 9, pp. 1953-1965.View/Download from: Publisher's site
AIM:To explore the role of coping moderators in self-management of breathlessness crises by people with advanced respiratory disease. DESIGN:A secondary analysis of semi-structured interview data. METHODS:Interviews with patients who had advanced respiratory disease, chronic breathlessness and at least one experience where they considered presenting to Emergency but self-managed instead (a "near miss"). Participants were recruited from New South Wales, Queensland, Victoria, South Australia or Tasmania. Eligible caregivers were those who contributed to Emergency-related decision-making. Interviews were coded inductively and then deductively against the coping moderators social support and dispositional coping style, defined by the Transactional Model of Stress and Coping. RESULTS:Interviews were conducted between October 2015 - April 2016 with 20 patients and three caregivers. Social networks offered emotional and practical support but also had potential for conflict with patients' 'hardy' coping style. Patient hardiness (characterized by a sense of 'commitment' and 'challenge') promoted a proactive approach to self-management but made some patients less willing to accept support. Information-seeking tendencies varied between patients and were sometimes shared with caregivers. An optimistic coping style appeared to be less equivocally beneficial. CONCLUSION:This study shows that social support and coping style may influence how people self-manage through their breathlessness crises and identified ways coping moderators can facilitate or hinder effective self-management. IMPACT:This study confers insights into how social-support and coping style can be supported and optimized to facilitate breathlessness self-management. Acknowledging coping moderator interactions is beneficial for developing resources and strategies that recognise patient mastery.
Luckett, T, Phillips, J, Johnson, M, Garcia, M, Bhattarai, P, Carrieri-Kohlman, V, Hutchinson, A, Disler, RT, Currow, D, Agar, M, Ivynian, S, Chye, R, Newton, PJ & Davidson, PM 2017, 'Insights from Australians with respiratory disease living in the community with experience of self-managing through an emergency department 'near miss' for breathlessness: a strengths-based qualitative study.', BMJ Open, vol. 7, no. 12, pp. 1-11.View/Download from: Publisher's site
Breathlessness 'crises' in people with chronic respiratory conditions are a common precipitant for emergency department (ED) presentations, many of which might be avoided through improved self-management and support. This study sought insights from people with experience of ED 'near misses' where they considered going to the ED but successfully self-managed instead.A qualitative approach was used with a phenomenological orientation. Participants were eligible if they reported breathlessness on most days from a diagnosed respiratory condition and experience of ≥1 ED near miss. Recruitment was through respiratory support groups and pulmonary rehabilitation clinics. Semistructured interviews were conducted with each participant via telephone or face-to-face. Questions focused on ED-related decision-making, information finding, breathlessness management and support. This analysis used an integrative approach and independent coding by two researchers. Lazarus and Cohen's Transactional Model of Stress and Coping informed interpretive themes.Interviews were conducted with 20 participants, 15 of whom had chronic obstructive pulmonary disease. Nineteen interviews were conducted via telephone. Analysis identified important factors in avoiding ED presentation to include perceived control over breathlessness, self-efficacy in coping with a crisis and desire not to be hospitalised. Effective coping strategies included: taking a project management approach that involved goal setting, monitoring and risk management; managing the affective dimension of breathlessness separately from the sensory perceptual and building three-way partnerships with primary care and respiratory services.In addition to teaching non-pharmacological and pharmacological management of breathlessness, interventions should aim to develop patients' generic self-management skills. Interventions to improve self-efficacy should ensure this is substantiated by transfer of skills and support, including knowledge...