This work has also been published in Pask et al.79
Workstream 2 (‘stakeholders’ perspectives on measuring complexity’) was planned to meet objective 2: to utilise the perspectives of key stakeholders (i.e. patients, families, professional caregivers, commissioners and policy-makers) on complexity in palliative care to inform subsequent casemix development.
Aim
Our aim was to explore the perspectives of key stakeholders on complexity in palliative care to inform subsequent casemix development.
Methods
Design
We designed a qualitative study using semistructured interviews with key stakeholders in specialist palliative care.
Recruitment and consent
We undertook audio-recorded, individual interviews with various stakeholders across specialist palliative care. Participants were either recruited from one of the C-CHANGE participating sites for workstreams 3 and 4 or – for policy and national leads – sought out by the wider research team at the Cicely Saunders Institute (the leading UK research institute for palliative care). Within this frame, participants were sampled purposively, by personal and/or professional background, geographical location and experiences of settings of care (hospital, hospice and community).
Data collection
A topic guide was developed from a review of evidence on complexity, potential criteria for casemix already used46 or proposed,58 existing casemix classifications in palliative care57 and predictors of resource use in the last year of life. It was refined by our PPI group, by the research team, and through discussion with and feedback from the Programme Steering Committee.
Face-to-face, semistructured interviews were conducted by C-CHANGE researchers in the participant’s preferred setting. To increase the credibility of the data, interviewers summarised the interview back to each respondent, to allow the participant to verify the data and clarify any misconceptions or add additional information. All interviews were digitally audio-recorded, anonymised and transcribed verbatim to ensure confidentiality.
Analysis
Interviews were analysed independently by two researchers from the C-CHANGE team using the five analytical steps of framework analysis: (1) familiarisation, (2) identifying a thematic framework, (3) indexing, (4) charting and (5) mapping and interpretation. Framework analysis was considered the optimal approach to allow both an inductive and deductive approach, which would facilitate comparison across stakeholder groups and support the service delivery and policy focus of this research. Emerging themes were discussed with the whole C-CHANGE research team to improve the confirmability and dependability of the findings. Charts were created for each theme, grouped by stakeholder type, and were used to explore stakeholder assonance and dissonance among perspectives on each theme and subtheme. Analysis was managed using NVivo version 10 (QSR International, Warrington, UK). The framework was presented to the PPI advisory group, the Project Steering Committee and other qualitative research experts to refine and improve the presentation of the developed framework.
Ethics approval
Ethics approval was gained from the King’s College London REC (BDM/14/15–2).
Results
Sixty-five participants – including patients and families – were recruited and interviewed (see Pask et al.79 for full details of participant characteristics). Participants provided valuable insights into how complexity might best be understood. They largely understood and valued any use of individual person-level criteria to determine complexity and had nuanced perspectives on how this might be undertaken.
Based on these qualitative findings, we developed a theoretical framework – adapted from Bronfenbrenner’s Ecological Systems Theory80 – directly using the interview data provided by patient, family and professional participants to help understand complexity in specialist palliative care (see Figure 3). This framework emphasises that considering physical, psychological, social and spiritual domains (a classic approach in specialist palliative care) is not enough to characterise complexity. Other aspects – such as ‘pre-existing’ (often social), ‘cumulative’ and ‘invisible’ (such as unrecognised depression in the context of physical illness) complexity – are important too, yet frequently overlooked.
FIGURE 3 A theoretical framework of complexity in the palliative care context. Reproduced with permission from Pask et al.79 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY NC 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: https://creativecommons.org/licenses/by-nc/4.0. The figure includes minor additions and formatting changes to the original figure. (Figure not reproduced here; see the original article.)
The way in which professionals and services interact with people and their families was also considered to be crucial to assessing, understanding and responding appropriately to complexity. Number, severity, range and temporality of needs – as well as ‘hidden’ or overlooked aspects of complexity, as noted above – all needed to be considered in the development of a meaningful casemix classification for specialist palliative care.