Taxonomy of treatment burden in lung cancer and COPD
| Primary construct | Secondary construct | Lung cancer | References | COPD | References |
| Workload (the affective, cognitive, informational, material and relational tasks delegated to patients/caregivers) |
Diagnosis /illness identity | Diagnosis as shock | 47–55 | Diagnosis imperceptible | 33–46 |
| Obvious illness identity with sociocultural resonance (therefore understood by patient/informal caregiver/HCP) | 50 53 64 | Unclear illness identity, without sociocultural resonance (therefore, poorly understood by patient/informal caregiver/HCP) | 33–35 37 39 42 43 45 56–59 | ||
| Short disease trajectory (clear to patient and informal caregiver) | 50 53 64 | Long and uncertain disease trajectory (unclear to patient and informal caregiver) | 33–35 37 39 42 43 45 56–59 | ||
| Attitude towards treatment | Demands of treatment workload as over-riding life priority (for both patient and informal caregiver) | 64–67 | Demands of treatment workload balanced with domestic/professional/sentimental demands of everyday life (for both patient and informal caregiver) | 35 43 57 59 68–73 | |
| Practical demands of treatment workload as a relief from the existential threat of cancer | 51 53 86 93 | Practical demands of treatment workload as hard work | 33 37 39 42 70 72 74–84 | ||
| Treatment as hope | 49 51 64 86 87 91 94 95 | Institutionalised care as respite from unrelenting demands of self-management | 57 58 84 104 109–119 | ||
| Sense of ‘limbo’ once treatment completed | 48 66 96–98 | ||||
| Reluctance to stop treatment despite debilitating pathophysiological side effects | 86 | ||||
| Treatment for family rather than for patient | 67 87 99 | ||||
| Treatment options | Lack of options: treatment or death | 67 91 93 97 121 | Lack of treatment options (lack of information or feeling that ‘nothing can be done’ from HCPs) | 35 57 70 113 123 | |
| Decision to cede control over choice of treatment options to trusted HCPs | 86 93 97 99 121 122 | ||||
| Access to/navigation of healthcare system/institutions | Immediacy of access to healthcare | 49 67 85 121 131 132 | Difficulties with access to healthcare | 44 45 58 78 109 112 113 116 124 126 129 | |
| Specialist HCPs with specific knowledge of lung cancer | 49 67 85 121 131 132 | Generalist HCPs who lack specific knowledge of COPD | 44 45 58 78 109 112 113 116 124 126 129 | ||
| Structured treatment pathway | 49 53 66 67 85 121 131 132 | Fragmented treatment pathway | 34 37 42 44 58 73 74 76 103 108 109 116 120 126 127 129 | ||
| Practical workload of treatment | Specialist treatment workload in secondary care with debilitating pathophysiological side effects | 52 91 134 | Multiple appointments for treatment in primary, secondary care and in the community | 73 101 108 120 123 125 133 135 | |
| Limited delegated tasks from HCPs | 48 50 52 53 65–67 86 89 91 93 97–99 121 131 146 | Significant workload of delegated treatment tasks at home from HCPs | 33 35 37 42 45 58 59 68 69 72–76 79 80 83 103 106 108 109 114 126 127 129 130 133 136–145 | ||
| Informational workload of treatment | Generally high-quality information provided in written form and from specialist HCPs | 64 67 85 93 97–99 121 132 147 148 151 | Patients typically poorly informed about condition from diagnosis to death adding to treatment workload | 33–46 74 76 78 81 108 123 127 130 133 137 154 | |
| Lack of information as a deliberate choice on the part of patients—a tactic for maintaining hope in the face of a poor prognosis | 48 51 64 66 97 99 121 122 152 153 | Conflicting/contradictory information adds to patient/informal caregiver distress | 36 44 56 79 109 110 | ||
| Conflicting/contradictory information adds to patient/informal caregiver distress | 89 96–98 122 | ||||
|
Capacity (the affective, cognitive, informational, material and relational resources available to be mobilised by patients/caregivers) - Enhanced by diagnosis | Family and friends | Family and friends are seen as the main source of support post diagnosis (but fear of being a ‘burden’ on family) |
49 55 66 67 87 132 147 ‘Burden’ 49 52 54 85 86 91 95 96 99 132 147: | Family and friends are seen as the main source of support post diagnosis | 37 58 73 74 76 79 80 108 125 130 |
| Family and friends are able to prioritise supporting the patient through their treatment workload owing to the short disease trajectory and the recognition of the patient’s likely imminent death | 54 | Family and friends have to balance the demands of the treatment workload with the demands of everyday life owing to the long and uncertain disease trajectory | 36 74 76 130 133 136 | ||
| Support for the patient’s treatment workload seen as an affirmation of the strength of the patient/family member relationship in the face of imminent death | 55 66 132 151 | Support for the patient’s treatment workload may be seen as an affirmation of the strength of the patient/family member relationship | 36 58 73 74 79 80 130 | ||
| Caregivers feel compelled to take on a care-giving role over the long duration of the disease trajectory | 36 37 74 76 80 130 133 136 | ||||
| HCPs | Importance of support from empathetic, trusted HCPs in whom patients have faith | 49 53 66 85–87 93 97 121 122 131 132 | Importance of support from trusted HCPs, especially those with specialist knowledge of COPD | 57 78 80 103 106 109 120 125 127 129 | |
| Less commonly, loss of faith in HCPs | (85 122) | Importance of relational continuity with HCPs making access to and navigation of the healthcare system and its institutions easier | 80 81 109 111 125 129 | ||
| Loss of faith in HCPs | 35 38 41 44 45 73–76 109 113 123 126 | ||||
| Peer support | Little peer support available for patients with lung cancer. What is available appears impromptu and transitory | 91 97 156 | Peer support is an important resource and is generally accessed through PR |
40 68 82 108 PR: 56 57 100–105 107 115 135 155 | |
| Shared experiences with peers reduces isolation | 56 100–102 104 105 107 115 135 | ||||
| Peer support is used as a resource for information sharing | (56 57) | ||||
| Disease trajectory | Short disease trajectory: ill equipped to self-manage symptoms at home | 92 | Long disease trajectory: get to know their bodies and symptoms, through trial and error | 35 37 42 68 73 103 114 150 | |
|
Capacity (the affective, cognitive, informational, material and relational resources available to be mobilised by patients/caregivers) - Diminished by diagnosis | Stigma | Patients are considered culpable for their illness and stigmatised by society | (151 158) | Patients are considered culpable for their illness and stigmatised by society | 38 40 75 113 126 |
| Patients consider themselves culpable for their illness: a ‘self-inflicted’ disease | 85 159 160 | Patients consider themselves culpable for their illness: a ‘self-inflicted’ disease | 33 35 44 75 77 79 101 161 | ||
| Patients experience ‘felt’ stigma of blame, guilt and shame | 49 85 152 158 159 | Patients experience ‘felt’ stigma of blame, guilt and shame | 38 40 44 75 79 101 145 | ||
| Patients attempt to conceal their condition owing to fear of ‘enacted’ stigma leading to social isolation | (49 152) | Patients attempt to conceal their condition owing to fear of ‘enacted’ stigma leading to social isolation | (38 40) | ||
| Patients feel ‘marked’ by visible treatment leading to social isolation | (87 91) | Patients feel ‘marked’ by visible treatment leading to social isolation | 42 126 137 143 | ||
| Patients internalise stigma, considering themselves undeserving of treatment | (41 101) | ||||
| Patients experience ‘enacted’ stigma from HCPs, making access to treatment challenging | 36 38–40 44 71 74 75 118 126–128 | ||||
| Social isolation (self-imposed) | Embarrassment about symptoms, medications and treatment technologies which mark the patient as ill leading to fear of ‘enacted’ stigma | 87 90 91 | Embarrassment about symptoms, medications and treatment technologies which mark the patient as ill leading to fear of ‘enacted’ stigma | 42 77 137 142 143 | |
| Exacerbation triggers—leads to avoidance of social situations | (76 111) | ||||
| Social isolation (involuntary) | Illness as contagious: social networks contract as friends withdraw | 50 53 156 | Illness as contagious: social networks contract as friends withdraw. Isolation worsens with disease progression and deterioration of physical function |
82 101 136 143 Deterioration: 37 74 80 82 127 139 161 162 | |
| Psychological comorbidities lead to avoidance of social situations | (53 156) | Logistical difficulties of treatment workload limit patient to home | 38 42 58 59 69 73 79 108 111 126 137 139–141 143 | ||
| Social isolation extends beyond patient to affect informal caregiver | 36 37 74 76 80 133 136 | ||||
| Psychological comorbidities lead to avoidance of social situations | 78 79 82 101 102 |
COPD, chronic obstructive pulmonary disease; HCPs, healthcare professionals; PR, pulmonary rehabilitation.