Table 4

Factors affecting patient and caregiver experience of long-term life-limiting conditions

FindingMeasurable constructSummary results of included papers: factors that shape patient experience of long-term life-limiting conditions
1. Structural, spatial and systemic disadvantages are important factors that inhibit active engagement with formal healthcare and self-managementSocioeconomic statusPatient experience is negatively affected by inequalities related to income;62 71 age and gender;39 50 54 88 and ethnicity42
Spatial locationPatients and caregiver experience is negatively affected by unequal access to services and transport,40 70 73 76 and unequal distribution of environmental pollution40 70 73 76
System qualityPatients and caregiver experience is negatively affected by poor professional support and material assistance,40 70 continuity of care,76 coordination of services43 45 48 52 and intraprofessional communications.40 45 47 48 52 Limited professional expertise in multimorbidities,46 and slow professional responses to anxieties and emergencies76 are also markers of poor system quality
2. Patients and caregivers experience multiple affective, cognitive and interactional disadvantages as they seek to participate in encounters with clinicians, decisions about their formal healthcare and self-management processesCognitive advantagePatients and caregivers are cognitively disadvantaged by lack of educational resources57 83 and information.78 81 Disadvantage is exacerbated by poor understanding of disease and disease progression.40 41 43 45 46 50 52 56 58 59 64 69 75 76 88 These may lead to hypervigilance about symptoms, poor or confused symptom recognition,43 45 57 64 88 and ill-preparedness for crises45
Affective statePatients and caregivers may experience changes in self-identity, along with reduced self-esteem and self-worth, and loss of social functioning.41 43 50 54 60 79 84 89 They may experience increased fear, anxiety, isolation and discomfort,49 51 57 60 70 82 and this may lead to inappropriate responses to acute episodes42 47 57 67 71 74
Interaction qualityGood professional–patient relations,42 47 76 and individualised timing and type of information delivery44 53 78 83 can have a positive effect on patient and caregiver experience. Fear of death43 50 66 80 87 negatively affects patient–professional interaction
3. Patients and caregivers value resilience, functional performance and social support that make a practical contribution to formal healthcare and self-managementAdaptation to disruptionPatient and caregiver experience is positively affected by adaptive processes;43 61 63 the normalisation of experienced symptoms and physical limitations53 71 80 and normalisation of self-management strategies.63 Patient and caregiver resilience,58 61 73 84 capacity to manage uncertainty,39 42 76 82 tolerance of disruption of everyday activities and competing clinical priorities43 45 46 55 58 87 also positively affect patients experience
Caregiver supportCaregiver support is defined by material assistance,38 55 71 84 symptom management and self-management57 61 65 66 and emotional and relational solidarity.47 It is negatively affected by perceived burdens and workload that interfere with normal life38 39 76 77 81 89 90
CompetencePatients and caregivers demonstrate competence when they are able to exert control over disease progression,74 effectively participate in self-management,77 understand multimorbidities46 70 and manage polypharmacy64
 Help seekingPatient and caregiver help seeking is governed by interactions between expectations of clinical interventions,76 isolation and help seeking.51 64 67 70 Help seeking is framed mainly through rational responses to emergency situations,73 and patients and caregivers valued the security and safety of hospital care67 73
Technological supportTechnological interventions as life sustaining;45 73 as mastery;84 85 90 as burdens;58 65 79 as intrusions;81 90 risks of treatment failure/complications85 90
Situated decision-makingPatient and caregiver decision-making about help seeking and use of services was framed by the degree of awareness and uncertainty about prognosis;41 44 48 75 83 Difficulty and conflict over decisions45 86 could be ameliorated using tools and techniques to increase patient control77 81–83