title: Making sure services deliver for people with advanced heart failure: a longitudinal qualitative study of patients, family carers, and health professionals.
abstract: The objective of this study was to evaluate the key components of services for people with advanced heart failure from multiple perspectives and recommend how care might be delivered in line with UK policies on long-term conditions, palliative and end-of-life care. Serial interviews were conducted over 2 years with patients, case-linked family carers and professionals (n =162); followed by four focus groups involving patients, carers and key professionals (n =32). There were 36 patients with advanced heart failure, 30 family carers and 62 professionals included in the study from a UK health region with various heart failure care models. Participants confirmed the value of a key health professional coordinating care, holistic assessment and regular monitoring. A lack of time and resources due to competing priorities in primary care, failure to respond to the fluctuations of a heart failure illness trajectory, concerns about the balance between direct care from specialist nurses or a more advisory role and difficulty in judging when to move towards palliative care hindered consistent access to proactive care. A heart failure care framework, with key stages and service responses, was developed. We conclude that patients with long-term conditions needing palliative care should be identified and managed using pragmatic criteria that include a proactive shift in care goals.
authors.affiliation: Primary Palliative Care Research Group, Community Health Sciences - General Practice, University of Edinburgh, Edinburgh EH89DX, UK. kirsty.boyd@luht.scot.nhs.uk
authors.forename: Kirsty J
authors.initials: KJ
authors.lastname: Boyd
authors.forename: Allison
authors.initials: A
authors.lastname: Worth
authors.forename: Marilyn
authors.initials: M
authors.lastname: Kendall
authors.forename: Rebekah
authors.initials: R
authors.lastname: Pratt
authors.forename: Jo
authors.initials: J
authors.lastname: Hockley
authors.forename: Martin
authors.initials: M
authors.lastname: Denvir
authors.forename: Scott A
authors.initials: SA
authors.lastname: Murray
mesh_terms: D000203:Activities of Daily Living; D000368:Aged; D000369:Aged, 80 and over; D001290:Attitude; D017028:Caregivers / Q000523:psychology; D018450:Disease Progression; D055317:Evidence-Based Practice; D005260:Female; D017144:Focus Groups; D006291:Health Policy; D006302:Health Services Research; D006333:Heart Failure / Q000628:therapy*; D006699:Home Care Services / Q000458:organization & administration*; D006801:Humans; D007407:Interviews as Topic; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D010166:Palliative Care; D010347:Patient Care Planning; D011320:Primary Health Care / Q000458:organization & administration*; D011788:Quality of Life; D012606:Scotland