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

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%