Preferences of patients with palliative care needs and their families for engagement with service improvement work within the hospital setting: A qualitative study

Abstract

Background: There is growing recognition of the importance of involving patients and families with lived experiences of illness in healthcare service quality improvement, research and implementation initiatives. Ensuring input from people with palliative care needs is important, but how to enable this is not well understood. Aim: To seek the perspectives of Australian patients with palliative care needs, and their family members, to elicit their views on how to best contribute to inpatient palliative care quality improvement initiatives. Design: An exploratory qualitative study, using semi-structured interviews. Setting/participants: Eligible participants were adult patients with palliative care needs receiving care within a hospital setting, and their family members. Recruitment occurred through: five hospitals in New South Wales, Australia; and snowballing. Results: Fifty participants took part (21 patients and 29 family members). Results confirmed four themes: (1) Mechanisms for providing feedback about care quality need to be supportive and individualised; (2) The clinician-patient/family power imbalance makes real time feedback challenging to provide; (3) Willingness to contribute varies according to diagnosis, timing and role and (4) Face to face feedback is preferred for health service improvement work. Conclusions: Enabling meaningful consumer input to quality improvement requires careful consideration due to the unique requirements of the palliative care population. Embedding tailored outcome and experience measures to inform real-time care provision coupled with focussed opportunities for input into service improvement may best foster improvements in inpatient palliative care, founded in what matters most for people requiring this care.

Perspectives of inpatients with palliative care needs, their families, clinicians and key stakeholders on measuring quality of hospital care via patient experience measures: A qualitative study

“…Unlike patient reported outcome measures (PROMs), PREMs require patients to rate care quality, which can be uncomfortable for patients due to the clinician-patient/family power imbalance. 30 It is also noteworthy that collecting feedback about how clinical teams and/or units can improve may be limited when using PREMs due to feedback generosity leading to a ceiling effect, with the need for further methods that encourage constructive criticism. 31…”

“…Unlike patient reported outcome measures (PROMs), PREMs require patients to rate care quality, which can be uncomfortable for patients due to the clinicianpatient/family power imbalance. 30 It is also noteworthy that collecting feedback about how clinical teams and/or units can improve may be limited when using PREMs due to feedback generosity leading to a ceiling effect, with the need for further methods that encourage constructive criticism. 31 Another important consideration for implementing a PREM for patients with palliative care needs is their varied levels of cognition due to impacts of illness, severity of illness or related medications used for symptom relief.…”

“…6 Although PREMs are gaining international attention as a measure of healthcare quality 3,6 for palliative care service appraisal, 4 which PREMs are optimal and how best to implement these remains unclear. 7 A recent systematic review identified 44 PREMs designed for people with advanced serious illness and/or their families. 7 The variable alignment of these PREMs with noted areas of importance for safe and high-quality inpatient palliative care is described in addition to the fact the majority of items within listed PREMs are written in language that limits accessibility.…”

“…7 A recent systematic review identified 44 PREMs designed for people with advanced serious illness and/or their families. 7 The variable alignment of these PREMs with noted areas of importance for safe and high-quality inpatient palliative care is described in addition to the fact the majority of items within listed PREMs are written in language that limits accessibility. 7 In addition, there are a large number of PREMs developed for other care contexts 3 which may or may not be applicable in informing improvements in care quality for patients with palliative care needs.…”

“…7 The variable alignment of these PREMs with noted areas of importance for safe and high-quality inpatient palliative care is described in addition to the fact the majority of items within listed PREMs are written in language that limits accessibility. 7 In addition, there are a large number of PREMs developed for other care contexts 3 which may or may not be applicable in informing improvements in care quality for patients with palliative care needs. A recent scoping review identified methods used globally to capture patient experience data within the hospital setting.…”