The average score for domain 1 was 1.3 ± 1.3 (1.3/5, 26%). The lowest scoring items were identification of participant knowledge of the interviewer and their purposes for

conducting research (6/48, 12.5% with identification) and description of the interview characteristics (4/48, 8.3%). The average score for domain 2 was 1.9 ± 1.5 (1.9/5, 38%). The lowest scoring items were details regarding reasons for non-participation (15/48, 31.2%) and identification of data saturation (14/48, 29.1%). The average score of domain 3 was 1.4 ± 0.9 (1.4/3, 47%). The lowest scoring domains were identification of a coding tree (12/48, 25.0%) and clarity of minor themes (10/48, 20.8%).

A total of 18/48 (37.5%) studies scored a total of 3/13 or less. The item that most frequently scored a point for these studies was the “derivation of themes” (13/18, 72.2%). This suggests that even the lowest scoring studies often have considered or have a rationale for the themes that are generated. The other item that was scored with some consistency was the identification of methodological orientation (4/18, 22.2%).

This theme identifies the expectations and subsequent experiences (both good and poor) of HCP-patient interactions. Table 1 provides a full comparison of patient experiences within 5 domains and thus can be used as a summary document in itself. The domains included: 1) timing of information given, 2) needs and experiences considering the MS and symptoms, 3) information-giving related to service provision and needs, 4) needs and experiences of HCPs and 5) reasons why information was identified as valuable. Each domain is separated by wants and expectations vs. good or poor experiences. A summary of the good and poor experiences and expectations of patient’s with MS are provided below.

1) Sub-theme: Good experiences of information provision

There were greater levels of evidence of good experiences of information provision in quantitative articles (10/17, 59%) compared to qualitative articles (8/49, 16%). There appeared to be general satisfaction with information given during HCP-patient interactions (7/17, 41%). Qualitative articles were able to identify reasons why experiences of patients with MS were identified as good or positive. Patients valued the ability of a HCP to; see them quickly, identify problems accurately, acknowledge the limits of science and be able to interact in a responsive and efficient way, as well as arrange follow up meetings (6/49, 12%).

2) Sub-theme: Poor experiences of information provision

Over half the studies identified negative experiences during HCP-patient interactions; this included slightly higher numbers of qualitative articles (28/49, 57%) than quantitative articles (9/17, 53%). Patients identified experiences of not receiving adequate information

Qualitative studies summarised as [1] = Ahlström (2007), [2] = Abolhassani et al. (2015), [3] = Barker-Collo et al. (2006), [4] = Baker (1998), [5] Borreani et al. (2014), [6] Boyd and MacMillian (2005), [7] Davies et al. (2015), [8] Courts et al., (2004), [9] = Deibel et al. (2013), [10] = Edmonds et al. (2007), [11] = Edwards et al. (2008), [12] = Finlayson et al (2005), [13] = Fong et al (2006), [14] = Ghafaria et al (2015), [15] = Galushko et al (2014), [16] = Ghafari et al (2014), [17] = Golla et al (2011), [18] Golla et al. (2014), [19] = Hepworth et al. (2003), [20] = Hainsworth et al. (1994), [21] = Irvine et al. (2000), [22] = Isaksson et al. (2007), [23] = Johnson (2003), [24] = Kosmala-Anderson et al (2013), [25] = Isaksson et al (2008), [26] = Kirpatrick Pinson et al (2009), [27] = Koch et al (1999), [28] = Malcomson et al (2008), [29] = Lohne et al. (2010), [30] = Miller (1997), [31] = Olsson et al. (2008), [32] = Olsson et al. (2011), [33] = Oeseburg and Abma (2006), [34] = Ploughman et al. (2011), [35] = Ploughman et al. (2011b), [36] = Schnieder and Young (2010), [37] = Solari et al. (2007), [38] = Stewart and Sullivan (1982), [39] = Somerset et al. (2002), [40] = Soundy et al. (2012), [41] = Synnot et al. (2014), [42] = Thorne et al. (2004), [43] = Isaksson and Ahlström (2006), [44] = Wollin et al. (2006), [45] = Rubin (2005), [46] = Koopman and Schweitzer (1999), [47] Grose et al. (2012), [48] = Hepworth and Harrison (2004), [49] = Wollin et al. (2003). Quantitative studies summarised as 1q = Buecken et al. (2012), 2q = Baker (1994), 3q = Baker (1997), 4q = Freeman and Thompson (2000), 5q = Hepworth and Harrison (2004), 6Q = Gottberg et al. (2008), 7q = Lode et al. (2007), 8q = Lorefice et al. (2013), 9q = Matti et al. (2010), 10q = Somerset et al. (2001), 11q = Thorton and Lea (1992), 12q = Wollin et al. 2003, 13q = Yttberg et al. (2008), 14Q = McCabe et al. (2015), 15Q = Holmøy et al. (2012), 16Q = Messina et al. (2015), 17Q = de Seze et al. (2012). Other Notes: MS = multiple sclerosis, HCP = health care professionals.

about what is happening from doctors (10/49, 20%). This was supported by a quantitative study and by some HCPs also. Patients suggested that they were left with unanswered questions (6/49, 12%). For example, patients considered some HCPs who were not able to identify symptoms that caused MS as deficient in knowledge (9/49, 18%) or unable to bring the information together that related to the patient. In some cases patients with MS were given the wrong diagnosis and treatment (7/49, 14%) or the HCP could not give a diagnosis of MS or identify the experiences or symptoms that related to MS.

3) Sub-theme: The expectations of patients

Higher numbers of quantitative (8/17, 47%) studies identified aspects that related to the expectations of patients within interactions compared with the qualitative studies (19/49, 39%). Patients wanted further information within the following areas; information before a diagnosis was received or early information, the meaning of diagnosis, information around the symptoms and what change in symptoms to expect, or how to identify that an attack was occurring (9/49, 18%). Quantitative articles (4/17, 24%) supported these points. Quantitative articles also identified a patient’s need for understanding the prospects of getting worse and current research taking place as well as information regarding the role of HCP groups, often physiotherapists (3/17, 18%). Patients with MS wanted information considering current government regulations around health care system support for MS (6/49, 12%). This included information about; 1) if free services and agencies were available, 2) what entitlements and financial support the patient had and 3) what support was available as the disease progressed, for example, information on particular care services like palliative care. Further to this, where to get money in times of trouble or what applications could be made, was identified in some quantitative studies (3/17, 18%). Information regarding treatments (5/49, 10%), self- obtained information and wanting to know if a cure was possible were identified as important concepts that needed to be understood by patients. Three (3/17, 18%) quantitative studies identified the need for patients to have information on the management of symptoms and medication. Additionally, information regarding how to self-manage the condition was important, where more information was considered as having greater value than not understanding enough (3/49, 6%).

This theme considered a variety of bio-psychosocial factors influencing the HCP-pa- tient interaction. Table 2 provides a summary of this theme and support from different articles for this theme.

1) Sub-theme Factors that related to interactions and relationships

The most prevalent factors included those which were identified as being within a HCP-patient interaction. Nine factors that related to, and impacted on, interactions and relationships with other people were identified and are discussed below.

i) The importance of providing choice for patients

Some patients identified that they had a lack of choice or felt powerless to change the diagnostic procedures or treatment experience with HCPs (8/49, 16%). Choice in treatments was identified as important in five quantitative studies (5/17, 29%). This included choice of what information was obtained, opportunity to choose treatments or rehabilitation, and reaching decisions when the patients were too ill to choose or choosing when to disclose information to others. Studies identified patient needs that related to choice including: 1) the need for HCPs to ask questions and make sure patients understood information that was provided, particularly in topics which are more difficult to discuss, as this may limit choice; 2) the need to identify who supports (a significant other) the patients within interactions and which HCPs are involved in care, and 3) the ability to consider the patient’s own agenda and lists for meetings and interactions and giving the information requested by the patient (8/49, 16%). For example, for some patients being able to talk about the meaning of symptoms and treatment may be important where as for others it may not be. Due to a lack of choice or perceived usefulness of interaction from HCPs to patients, patients could begin to exercise their own choice through taking actions and self-management (5/49, 10%). For example, one study identified that interactions that limited a patients’ choice could cause the patient to change HCPs.

Specific factors which were identified as influencing a lack of choice included; 1) interactions that conformed to a clinical agenda, examples of this may include having to experience an interaction which lacks relational (the connection between patient and HCP and how the communication and interaction proceeds, further to the verbal or written provision of disease related information) or inclusive strategies and uses technical language, 2) not being able to leave the hospital grounds as an in-patient, 3) not having other support during encounters from close others, 4) experiencing a devaluing encounter; this was described as including terms not being explained to the patient, a

Notes: Qualitative studies summarised as [1] = Ahlström (2007), [2] = Abolhassani et al. (2015), [3] = Barker-Collo et al. (2006), [4] = Baker (1998), [5] Borreani et al. (2014), [6] Boyd and MacMillian (2005), [7] Davies et al. (2015), [8] Courts et al., (2004), [9] = Deibel et al. (2013), [10] = Edmonds et al. (2007), [11] = Edwards et al. (2008), [12] = Finlayson et al. (2005), [13] = Fong et al. (2006), [14] = Ghafaria et al. (2015), [15] = Galushko et al. (2014), [16] = Ghafari et al. (2014), [17] = Golla et al. (2011), [18] Golla et al. (2014), [19] = Hepworth et al. (2003), [20] = Hainsworth et al. (1994), [21] = Irvine et al. (2000), [22] = Isaksson et al. (2007), [23] = Johnson (2003), [24] = Kosmala-Anderson et al. (2013), [25] = Isaksson et al. (2008), [26] = Kirpatrick Pinson et al. (2009), [27] = Koch et al. (1999), [28] = Malcomson et al. (2008), [29] = Lohne et al. (2010), [30] = Miller (1997), [31] = Olsson et al. (2008), [32] = Olsson et al. (2011), [33] = Oeseburg and Abma (2006), [34] = Ploughman et al. (2011), [35] = Ploughman et al. (2011b), [36] = Schnieder and Young (2010), [37] = Solari et al. (2007), [38] = Stewart and Sullivan (1982), [39] = Somerset et al. (2002), [40] = Soundy et al. (2012), [41] = Synnot et al. (2014), [42] = Thorne et al. (2004), [43] = Isaksson and Ahlström (2006), [44] = Wollin et al. (2006), [45] = Rubin (2005), [46] = Koopman and Schweitzer (1999), [47] Grose et al. (2012), [48] = Hepworth and Harrison (2004), [49] = Wollin et al. (2003). Quantitative studies summarised as 1q = Buecken et al. (2012), 2q = Baker (1994), 3q = Baker (1997), 4q = Freeman and Thompson (2000), 5q = Hepworth and Harrison (2004), 6Q = Gottberg et al. (2008), 7q = Lode et al. (2007), 8q = Lorefice et al. (2013), 9q = Matti et al. (2010), 10q = Somerset et al. (2001), 11q = Thorton and Lea (1992), 12q = Wollin et al. 2003, 13q = Yttberg et al. (2008), 14Q = McCabe et al. (2015), 15Q = Holmøy et al. (2012), 16Q = Messina et al. (2015), 17Q = de Seze et al. (2012). Quantitative evidence summary: >25% prevalence = including information that has a 25% prevalence rate or substantial evidence, >50% prevalence = information on theme is included a critical or majority prevalence rate (>50% prevalence). ** indicates that finding is support by quantitative evidence. Qual = Qualitative studies, Quant = Quantitative Studies.

perception that the HCP was not giving adequate time to the encounter, perceiving that the patient was not heard or listened to, valued or believed from what they said, or being told/prescribed what to do, 5) experiencing increased difficulties at times of transition, or symptom exacerbation.

Further to this there was variability in the perceived value of information within participants responses (3/49, 6%). This was highlighted by quantitative studies (4/17, 24%). Uncertainty around prognosis and change in symptoms could motivate some patients to find out more information. Alternatively it was important to note that some patients were not interested in finding out more about the disease (2/49, 4%) and also that the need for information may vary e.g., information around death and dying may not be wanted by some patients.

ii) Coordination and Continuity of care

A lack of continuity in care or co-ordination of care agencies was identified (5/49, 10%), although there were good experiences of this in both qualitative and quantitative studies (2/17, 12%). There were different and varied reasons for the poor experiences reported by both patients and HCPs. Patients identified that appointments could only be arranged quite a distance in the future, with long waiting times which could vary by geographical variation in service provision. For example one study stated “the people with MS talked about their frustrations in having to repeat their story with each clinician they met” [77] . HCPs identified that patients wanted one competent HCP who knows the complexities of MS. In addition, it was stated that if the information that the patient wanted to hear was not provided, the patients could change providers. Patients identified that within the journey of MS often there are loss of a specialist who would have other case loads and effectively be withdrawn from the patient’s care. This could leave patients with the perception that they were isolated and without support or on their own. It was suggested that poor continuity could be experienced within progressions or transitions in the illness. Continuity in care may be reduced because of the compartmentalization of services or lack of funding for services.

iii) View or support from the family

During meetings with HCPs, having family members presents was perceived in both a positive and negative way by patients (7/49, 14%). Positive experiences included the usefulness of having others present in a meeting to remember information, the benefit of being able to share information, the ability to support gathering information and the ability of a relative to acknowledge or accept diagnosis that could aid the patient’s adjustment. Negative experiences were reported and included a lack of support from close others, a misunderstanding of the disease by some and a general decrease in social network size. More importantly it also included the spouse leaving or divorce and the patient potentially dying alone. One reason for this may be because the patient perceived close others to treat them differently following disclosure. One quantitative study (1/17, 6%) identified that patients who lived alone may increase the requirement for service provision or HCP assistance.

iv) The delivery of information and news relating to MS

Patients were able to recall negative relational communication, this included; damaging words, sentences, tone of voice and other non-verbal cues like delivery of information in a “casual” way and details about the delivery of information from HCPs and the emotional impact this had on them (11/49, 22%). Patronizing comments were identified as particularly difficult. For example, being told how lucky the patient is that the diagnosis is not worse, or hearing the statistics of what might happen that appear good or positive by an HCP, but may be viewed in a different light by a patient. The provision of unmitigated information from HCPs within diagnosis was identified, for instance one patient remembered the doctor saying “go away and live with it” [54] . Another example included not being told directly about the diagnosis, for example being told to read some information around the disease. The outcomes from such experiences could increase fear and frustration in patients and isolate the patient and prevent future contact with services. For example, one study stated that “It was obvious that initial conversations left a lasting negative impression of GPs and/or neurologists and that many participants felt isolated and/or abandoned by the medical team” [61] .

Quantitative studies (2/17, 12%) provided some context for interaction, identifying who provided the majority of interactions and thus who this information may be most suited to. The two most frequently utilized outpatient hospital departments included; neurology and emergency room. The two most frequently accessed professional groups were physicians followed by physiotherapists.

v) Judgmental or flippant remarks dismissing the patient and suggesting the patient is misinformed or imagining experiences

Some patients had experienced remarks and comments that suggested the patient was lying or imagining their experiences (6/49, 12%). This could include instances where the patient had self-diagnosed and the HCPs had stated that it was incorrect, or stated that it was not for the patient to do this. Further to this, some patients described being treated or given information based on their physical appearance and functioning rather than their experiences, thus experiencing a form of discrimination. The views of patients could contrast the views of some HCPs. For example, the provision of “realistic” information from HCPs could be difficult for some patients to accept. For instance, a GP who considers a patient with what he termed as a “mild” form of MS and with this diagnosis then suggests that the patient should keep working, despite the patient wanting to stop.

vi) Power relations and the perception of patients that they were not being valued for their thoughts

Patients identified experiences that made them feel weak, powerless often within a paternalistic approach to care (6/49, 12%). Examples of this included dismissing or trivializing the patient’s experience, belittling or making the patient feel like a burden on society, not taking the patient seriously, withholding information or assuming that the patient had a low level of knowledge and being told what to do or what was needed without consultation. For example, one study stated “Believing that important information had been withheld was particularly troublesome to the participants in their quest to learn about their illness and in their efforts to take control over their illness” [72] . The result of such interaction could make the patient feel depressed and desperate.

vii) Insufficient care experience including treatment lacking empathy and sympathy that affected dignity

Patients identified experiences of insufficient care and dissatisfaction with services (9/49, 18%). Dissatisfaction was most often generated from patients perceiving that the HCP-patient interaction was perceived to be depersonalised way, where little interest was shown towards the patients’ situation and circumstance. The experience was often insufficient compared to their expectations of the interaction before hand. Patients used words to describe being treated like an “object” or “piece of meat” during care. For example, one patient stated, “I did feel like I was just another patient. It was very impersonal especially since it was such a big deal to me and seemed pretty routine to them” [38] . The experience of such treatment was associated with isolation and loss of dignity. Particular problems were identified as a lack of the following aspects; 1) care, compassion or sensitivity, empathy this was supported by quantitative studies where care was wanted but not received, 2) kind treatment, 3) lack of assistance whilst as an inpatient, 4) too little time for interactions within appointments or an inability to listen or give understanding. According to quantitative studies a problem could occur if this type of support was wanted and not received (2/17, 12%). Some studies identified dissatisfaction with the availability of psychosocial and emotional support (2/17, 12%).

viii) The value of emotional support and being able to just listen and provide empathy

Patients expected comfort and emotional support (20/49, 41%); this type of support was identified as being more important in patients who were isolated or older. Three quantitative studies (3/17, 18%) identified that there appeared to be general satisfaction with sympathy and kind treatment received from HCPs. Patients highly valued the time that HCPs gave for listening to their experiences and problems in order to validate them (12/49, 24%). Specific qualities during interaction that were valued included being sensitive to the individual’s emotional needs, being taken seriously and feeling respected by the HCP (8/49, 16%). For example one patient stated, “One day when I was crying, a nurse held my hand for a few minutes and stayed with me. She listened to me, I needed sympathy, empathy, and reassurance; she gave all these things to me” [50] . HCPs highlighted the value of this form of support.

Particular interactional approaches or skills could enhance this type of support needs. Such documented by patients as valuable included; sympathy, listening or active listening, telling the patient they are not alone and are supported in the process, confirming the patients actions and choices or decisions made, providing the patient with hope, and being respectful. The value of receiving emotional support included feeling welcomed and valued, gaining encouragement, as well as gaining a sense of dignity and hope. Where patients experienced emotional support during interaction with HCPS they reported feeling encouraged, valued and respected. This helped them to feel more hopeful and enhanced their ability to make decisions.

ix) Provision of information, trust and empowerment

The provision of information and experiences of interactions was able to empower patients or disempower them. Patients felt empowered when they perceived a partnership with a HCP who acknowledged and valued the patient’s experience and choice (6/49, 12%). This perception helped patients feel they could express feelings or ask questions. It was also important for patients to feel supported, to trust the HCPs and to receive tailored and accurate information that was direct and understandable. Patients felt disempowered when they perceived themselves to be dependent on the information and advice from the HCP or when HCPs used technical terms or medical jargon without explaining it. For example one study stated that “Comments such as ‘it’s a mystery to me’ or ‘you know more about this than I do’ magnified the participants’ sense of being alone in managing their disease” [72] .

2) Sub-theme 2.2 Internal Psychological factors

Studies identified two internal psychological factors that influenced the HCP-patient interaction.

i) Readiness to receive information

Patients varied in their own readiness to receive information. A frequently cited reason for this was the mental well-being of the patient (8/49, 16%). Notably emotional or adjustment related responses like denial, fear, anger or depression were reported to prevent the patient being ready to receive information (7/49, 14%). Fear and worry were increased at certain times, for instance, during the experience of unknown or undiagnosed symptoms, whilst waiting for test results and when worrying about the outcome of test results. Such responses reduced the patient’s ability to assimilate information. Interestingly, one quantitative study identified that those more interested in the “uncertainty” surrounding their symptoms and MS, for instance an unknown future, may more actively seek information.

The mental well-being of the patient and ability to receive information varied because of several factors. The factors included; 1) the symptoms experienced, previous experience of symptoms, 2) values and views of the meaning of symptoms in the patient’s life, 3) the topic of information being covered within the HCP-patient interaction, for instance, end of life care, or how optimistic or pessimistic the interaction with the HCP had been perceived, 4) the topic within the HCP-patient interaction was of a sensitive nature, or difficult area, not understood well by the HCP, and 5) if information was perceived in a negative way. In addition to this, quantitative studies identified that patients may not know what questions to ask, could be too intimidated, or feel too ignorant about MS to ask. Demographic factors also influenced the ability to receive information, for example, quantitative studies (3/17, 18%) found variation by gender (women had a greater need for emotional support) and age (younger age groups 18 - 39 years wanted more information than older age groups >40 years).

ii) Factors that influenced the ability or desire to ask questions

Some patients did not want to ask the HCPs questions or weren’t able to ask immediately/expressed hesitation in asking questions to HCPs (5/49, 10%). A variety of reasons were given including; 1) the limited value of asking a question, due to a perception of the HCPs lack of knowledge on the topic (HCPs could be less willing to share information in case it was wrong), 2) not knowing what questions to ask because of a personal lack of understanding about MS, 3) several internal reasons were suggested such as the question not perceived as serious enough to bring up, that acceptance of what had happened by the patient wasn’t possible, or that the patient was currently managing so the need to ask a question was less, 4) others didn’t want to “bother” the HCPs with their situation and 5) others could be embarrassed about the topic of conversation. Despite this, a worsening of symptoms could prompt patients to return to a HCP for further advice. Some patients who did not understand the symptoms of MS or the prognosis of the illness felt more uncertain, fearful, worried or disempowered about what could happen. This was identified by some patients as being associated with the experiences of subsequent depression.