A framework for complexity in palliative care: A qualitative study with patients, family carers and professionals

Abstract

Background: Palliative care patients are often described as complex but evidence on complexity is limited. We need to understand complexity, including at individual patient-level, to define specialist palliative care, characterise palliative care populations and meaningfully compare interventions/outcomes. Aim: To explore palliative care stakeholders' views on what makes a patient more or less complex and insights on capturing complexity at patient-level. Design: In-depth qualitative interviews, analysed using Framework analysis. Participants/setting: Semi-structured interviews across six UK centres with patients, family, professionals, managers and senior leads, purposively sampled by experience, background, location and setting (hospital, hospice and community). Results: 65 participants provided an understanding of complexity, which extended far beyond the commonly used physical, psychological, social and spiritual domains. Complexity included how patients interact with family/professionals, how services' respond to needs and societal perspectives on care. 'Pre-existing', 'cumulative' and 'invisible' complexity are further important dimensions to delivering effective palliative and end-of-life care. The dynamic nature of illness and needs over time was also profoundly influential. Adapting Bronfenbrenner's Ecological Systems Theory, we categorised findings into the microsystem (person, needs and characteristics), chronosystem (dynamic influences of time), mesosystem (interactions with family/health professionals), exosystem (palliative care services/systems) and macrosystem (societal influences). Stakeholders found it acceptable to capture complexity at the patient-level, with perceived benefits for improving palliative care resource allocation. Conclusion: Our conceptual framework encompasses additional elements beyond physical, psychological, social and spiritual domains and advances systematic understanding of complexity within the context of palliative care. This framework helps capture patient-level complexity and target resource provision in specialist palliative care.

<p>Describing Complexity in Palliative Home Care Through HexCom: A Cross-Sectional, Multicenter Study</p>

“…Our results also show that the role of the social worker on these teams and their integration in the social and community network must be reinforced [57][58][59][60][61][62][63] and that, due to the intensity of this type of care (refractoriness, changing circumstances and short duration), health-care teams and professionals must be encouraged to practice self-care. [64][65][66][67][68] These findings highlight the importance of the presence of a skilled caregiver in the home, as well as the need for assessment of all areas included in the model due to the heavy burden that the psychosocial field can have on suffering at the end-of-life. 45,69 We also recommend further analysis of complexity as observed in non-cancer groups, and it will be interesting to see the evolution of complexity.…”

Constructing Stability – A Classic Grounded Theory of Next-of-Kin in Palliative Cancer Care

“…Being next-of-kin in palliative care is complex and demanding; it comprises changing roles and novel practical and emotional challenges [31]. Next-of-kin can also be uncertain regarding their own needs, as they put the patient rst [32]. Andershed [33] describe a balance between burden and capacity.…”

Constructing Stability – A Classic Grounded Theory Of Next-Of-Kin In Palliative Cancer Care

“…Stress and depressive symptoms were also found when examining caregiver burden among next-of-kin in palliative care [8], as well as next-of-kin to patients with late-life depression [30]. Being next-of-kin in palliative care is complex and demanding; it comprises changing roles and novel practical and emotional challenges [31]. Nextof-kin can also be uncertain regarding their own needs, as they put the patient first [32].…”