Mapping patient journeys: a novel method to explore patient and carer experiences of injectable anticipatory medication care in the community and identify opportunities for improvement
Discuss this preprint
Start a discussion What are Sciety discussions?Listed in
This article is not in any list yet, why not save it to one of your lists.Abstract
Background
Injectable anticipatory medications are routinely prescribed ahead of need in many countries to help manage distressing end-of-life symptoms. However, little is known about the lived experience of patients and informal caregivers as they navigate the prescription and use of anticipatory medications.
Aim
To understand patient journeys in navigating anticipatory medication care, and to identify interactions with the greatest potential for improvement.
Design
Qualitative secondary analysis of longitudinal interview data using framework analysis and patient journey mapping techniques.
Setting/participants
Eleven patient-centred cases receiving end-of-life care in the community. Six patients, nine informal caregivers and five healthcare professionals took part (28 interviews).
Results
Patient journeys with anticipatory medications differed from intended pathways. Participants appreciated having access to injectable medications for future symptom control. However, there was suboptimal information exchange between patients, informal caregivers and healthcare professionals regarding their purpose and threshold for use. Navigating unfamiliar and complex end-of-life medication support pathways was more successful where patients could self-advocate or had live-in informal caregiver advocates, compared to those who lived alone or experienced communication difficulties.
Conclusions
Patient and informal caregiver experiences of timely symptom control could be improved by healthcare professionals having open and ongoing conversations about the role of anticipatory medications. Different patient contexts and fluctuating abilities point to a need for simplified and better signposted ways for accessing healthcare professional advice, and medication input. Journey mapping techniques offer a novel way to illustrate patient and informal caregivers lived experience and can be adapted for researching other pathways.
Key Statements
What is already known about the topic?
-
Anticipatory prescribing is considered best practice in aiding the timely control of distressing end-of-life symptoms in the community.
-
The intended pathway for prescribing and using injectable anticipatory medications in the community is complex, consisting of many decision-making points and practical activities.
-
Little is known about patients’ and families’ experiences of this care
What this paper adds
-
The use of journey mapping techniques illustrates how patients’ and informal caregivers’ experiences of navigating anticipatory medications differ from the intended pathway.
-
Patient personas highlight how individual patient characteristics and advocacy skills greatly influence journeys with anticipatory medications.
-
Patients and informal carers find the systems for using anticipatory medications inherently complex and clear professional signposting is needed.
Implications for practice, theory or policy
-
pen and ongoing conversations about the purpose and use of anticipatory medications need to be tailored to individual patient and informal carer contexts.
-
experiential journey mapping techniques and personas is an innovative method for giving patients and their families a voice to help improve cross-organisational systems for delivering end-of-life care.
