Sub-theme | Code | Included studies support for code | Key Findings (1 = evidence where at least 5 qualitative studies (10%) support the information 2 = unique findings which were identified as “significant” statistically or as clinically meaningful findings; or where prevalence is given a prevalence of >50% and when at least 2 (15%) quantitative studies support the finding) |
Sub-theme 2.1 Factors that related to interactions and relationships | The importance of providing choice for patients | Qual 20/49 or 41%
Articles: 1, 3, 4, 5, 6, 7, 9, 16, 17, 20, 25, 27, 33, 34, 37, 38, 39, 42, 44, 45
Quant 8/17 or 47%
Articles: 1Q, 2Q, 3Q, 5Q, 8Q, 13Q, 15Q, 17Q | 1) Patients identified interactions that provided little choice, this was worse when they felt they had to confirm to the HCPs agenda and when they felt not heard or listened to. There was value for patients when the HCP considered their own agenda and when they could take action and self-management. 2) Variability in the need for information was reported across patients |
Coordination and Continuity of care | Qual 7/49 or 14.2%
Articles: 5, 10, 15, 17, 23, 27, 47
Quant 3/17 or 18%
Articles: 3Q, 13Q, 15Q | 1) Studies identified a lack of continuity of care, this reflected lack of communication between HCPs and agencies as well as loss of valued HCPs | |
View or support from the family | Qual 11/49 or 22%
Articles: 4, 11, 13, 15, 19, 29, 37, 38, 42, 46, 48
Quant 1/17 or 6%
Articles: 4Q |
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The delivery of information and news relating to MS | Qual 12/49 or 24%
Articles: 3, 8, 11, 20, 21, 23, 24, 27, 28, 29, 40, 42
Quant 2/17 or 12%
Articles: 4Q, 6Q | 1) Words or sentences perceived in a negative way, tone of voice which was patronizing, stating that the patient is luckily that it is not worse, or statistics which could be interpreted in negative, and delivery of information in a casual way could have a negative and lasting impact | |
Judgmental or flippant remarks dismissing the patient and suggesting the patient is misinformed or imagining experiences | Qual 6/49 or 12%
Articles: 8, 11, 32, 38, 42, 43 | 1) Comments suggesting the patients were lying or imagining symptoms, were perceived as particularly hurtful and negative | |
Power relations and the perception of patients’ that they were not being valued for their thoughts | Qual 8/49 or 16%
Articles: 2, 8, 20, 24, 27, 32, 29, 42
Quant 1/17 or 6%
Articles: 6Q | 1) Experiences that made patients feel worthless and powerless revolved around a paternalistic approach to care, this included being told what to do (without consultation sometimes), belittling remarks, assuming the patient had a low level of knowledge and not taking patient seriously | |
| Qual 15/49 or 31% |
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