TABLE 1.

Included studies: Descriptors and key included domains/contexts

Author (Abbr)	Year	Country	Population	n	♀	♂	Age	Aims	Key findings	P1	P2	P3	P4	P5
Adamson et al	2018	USA	PwMS	14	13	1	27‐70	To understand ways that individuals with MS who had a recent relapse describe the roles of physical activity regarding MS itself, relapse, and disability identity	There is both empowerment and guilt in physical activity. Empowerment comes from feelings of taking control of MS, and guilt may develop through perceptions of disengaging with exercise			√	√
Al‐Sharman et al	2018	Jordan	PwMS	16	8	8	22‐57	To explore experiences and challenges of living with MS from a Jordanian perspective	Provides an overview of the experience of living with MS in Jordan, as conceptualized through two distinct areas of experience – that is, disease related experiences and experiences with the health‐care system	√	√	√	√	√
Aminian et al	2017	Canada	PwMS	15	12	3	23‐61	To see whether replacing sedentary behaviour with light activities to manage MS symptoms	Adults with MS were open to replace sitting with light activities		√	√		√
Anderson et al	2013	UK	Women with MS	9	9		18‐50	To identify concerns with pregnancy and mothering	Women with MS have difficulty in finding the correct information on how pregnancy will affect their MS. Main concerns surround theirs and their baby's future well‐being		√	√		√
Asanao et al	2015	Canada/USA	PwMS relapse	17	16	1	26‐69	To explore how PwMS process their relapse experience and manage the consequences	There is a need for multidisciplinary post‐relapse care beyond restoring functional limitations in the acute phase of relapse				√
Blundell Jones et al	2014	UK	Women with MS	10	10		30‐64	To explore the emotional experiences and help‐seeking behaviours of women with MS	Non‐help seeking was influenced by desire to keep things normal and a lack of knowledge regarding service provision. More holistic care from services was desired	√	√	√	√
Bogenscutz et al	2016	USA	PwMS	27	19	6	20‐69	To examine work‐related experiences of PwMS	Unpredictability of MS, effects on cognitive capabilities and physical stamina, and concerns about seeking workplace accommodations severely undermined prospects for continued work and education					√
Bogosian et al	2017	UK	PwMS	34	25	9	41‐77	To examine cognitive and behavioural challenges and adaptations for PwMS	Adjusting to MS following diagnosis a fluid process and involves decisions about whether to reveal or conceal the condition	√	√	√	√
Browne et al	2015	UK (Ireland)	PwMS	19	11	8	37‐64	To understand how bladder dysfunction interferes with quality of life	Bladder dysfunction is a major disruption to living with MS. In view of difficult to navigate health systems and services, many people with MS attempt to self‐manage	√	√	√		√
Brunn Helland et al	2015	Norway	PwMS	27	16	11	37‐71	To identify factors influencing use of rehab services	Communication skills including information giving skills of neurologist on diagnosis need improvement, and patients need equal access to information about rehabilitation options	√	√	√		√
Chard	2017	USA	PwMS doing aquatic exercise	45			18+	To determine attitudes and experiences of PwMS re aquatic exercise	Both MS‐specific exercise groups and general exercise groups provide positive exercise experiences, a history of previous exercise is not key to taking it up, class satisfaction based of sense of acceptance and good instructor, and HCPs could play a stronger role in encouraging PwMS		√	√	√	√
Coenen et al	2011	Germany	PwMS	27	19	8	28‐73	To explore impacts of MS on functioning and disability	Functioning and disability in MS can be influenced by a range of complex and multidimensional environmental and personal factors		√	√
Cowan et al	2018	Australia	PwMS after discharge from rehabilitation	15	9	6	25‐64	To explore lived experiences after inpatient rehabilitation and discharge home	Physical and mental fatigue impacted on all aspects of day‐to‐day life after rehabilitation. A desire for independence and concerns over burden on family were experienced, as was a loss of valued roles including work			√	√	√
de Ceuninck van Capelle et al	2016	Netherlands	PwMS recently diagnosed	10	8	2	27‐51	To understand how recently diagnosed PwMS experience family life	MS affected family life and perceived ability to care for their family and home. Given the pivotal role of this worry, more family‐centred care should be integrated into MS care			√		√
de Ceuninck van Capelle et al	2017	Netherlands	PwRRMS	10	8	2	27‐51	To explore patient's perspectives on using disease‐modifying therapies (DMTs) for MS	The use of DMTs and dealing with advice to start them are a complicated treatment step. Decision is not made in isolation, but is grounded in the support/advice from relatives and friends	√	√	√	√	√
Deghan‐Nayeri et al	2018	Iran	Women with MS	25	25		21‐45	To understand the sexual life and experiences of Iranian women with MS in an Iranian cultural context	Hiding sexual problems from husbands is common and sexual awareness and education should be extended in the rehabilitation team		√	√
Deghan‐Nayeri et al	2017	Iran	PwMS	11	6	5	24‐46	To understand factors affecting how PwMS cope	Coping with MS is complex and affected by both individual and broader factors, including social and economic conditions			√	√
Deghan‐Nayeri et al	2018	Iran	PwMS	11	6	5	24‐46	To understand the features of coping with MS	Identified four key features of coping with MS: acceptance, relationships, self‐regulation and self‐efficacy			√
Dennison et al	2011	UK	PwMS	30	22	8	40‐50	To identify the adjustment required when diagnosed with MS	Services for people with early‐stage MS need careful attention to ensure they are sensitive and supportive rather than threatening and alienating	√		√		√
Dennison et al	2016	UK	PwMS	15	12	3	31‐68	To explore how pwMS experience prognostic uncertainty and communication with HCPs	PwMS developed beliefs and expectations about their prognosis, particularly about pace of worsening, with minimal input from HCPs. Prognostic information threatened a need to remain present focused and was considered emotionally dangerous	√	√	√	√
Dlugonski et al	2012	USA	Women with MS	11	11		18‐64	To better understand the adoption and maintenance of physical activity in women w MS	Consideration of physical activity beliefs, motivations and strategies may be useful in designing behavioural interventions to increase physical activity			√		√
Encarnação et al	2016	Portugal	PwMS	15	9	6	31‐60	To understand the perception of faith in PwMS	Faith as a resource can achieve a positive outcome and assist PwMS to develop hope			√		√
Fallahi et al	2014	Iran	PwMS	25	18	7	20‐55	To explore the experiences of PwMS in confronting their diagnosis	Confronting a diagnosis of MS may involve a need for information, decisions around revealing a diagnosis, faith in god and emotional reactions including denial, anxiety fear and confusion	√	√			√
Frost et al	2017	UK	PwPMS	14	10	4	40‐67	To explore experiences of diagnosis and self‐management	Gender differences with coping and living with MS were identified. These are more apparent in early stages and at time of diagnosis	√	√	√	√	√
Gaskill et al	2011	USA	PwMS who are experiencing suicidal ideation (SI)	16	11	5	21‐64	To determine whether SI is greater in PwMS than the general population	Perceived loss of control was highlighted by all participants as contributing to SI. Interventions that seek to increase control in other areas of people's lives could serve as a buffer to SI			√
Ghafari et al	2014	Iran	PwMS who are married	25	18	7	20‐55	To determine the extent and type of spousal support	PwMS would rather have more emotional support than physical support					√
Ghafari et al	2015	Iran	PwMS	25	18	7	20‐55	To identify themes and subthemes of pwMS in relation to their hospital experiences	Main themes identified were religiosity, information seeking, seeking support, hope rearing, emotional reactions, concealing disease, fighting disease and disability		√
Giovannetti et al	2017	Italy	PwMS who have requested psychosocial support	19	13	6	19‐57	To explore adjustment to MS	Psychosocial interventions can support patients to adjust and accept diagnosis of MS	√		√
Harrison et al	2015	UK	PwMS who have major pain issues	25	19	6	18‐70	To explore PwMS experiences and responses to pain, and their perspectives of pain management	Identified pain‐related beliefs, emotional reactions and disparate pain management attitudes			√		√
Hosseini et al	2016	Iran	PwMS	34	25	9	23‐54	To identify the nature of leisure activities of PwMS in the context of Iranian culture	Six categories physical, social, individual, art/cultural, educational, and spiritual/religious. Useful to understand for mental health promotion purposes and tailored interventions			√
Hunt et al	2014	UK	PwMS in Ireland	5	3	2	40‐65	To explore meanings of leisure‐based visual art making for PwMS	PwMS valued creative art making, developed friendships and it enabled respite from worry			√		√
Kayes et al	2011	Australia	PwMS	10	7	3	34‐53	To explore barriers to physical activity	Barriers to physical activity are complex due to variability of MS symptoms		√	√	√
Kirk‐Brown and Van Dijk	2014	Australia/NZ	Employed PwMS	40	28	12	18‐65	To examine what psychosocial support PwMS require post disclosure to maintain employment	Management responses to disclosure should focus on abilities and inclusive decision making					√
Knaster et al	2011	USA	PwMS	12	8	4	41‐71	To examine how PwMS self‐manage	Self‐management involved mainlining control and adapting and altering to capabilities to perform valued roles			√	√
Lee Mortensen & Rasmussen	2017	Denmark	PwMS	40	29	11	18‐63	To explore the main factors affecting patients' preferences regarding MS treatment and health care	Ability to uphold meaningful role functioning was crucial to treatment priorities. Unmet information and support needs from HCPs especially at time of diagnosis	√	√	√
Lexell et al	2011	Sweden	PwMS	10	6	4	41‐67	To understand how PwMS adapt to their changed physical circumstances	Participants had to be prepared to adapt to rapidly changing circumstances on a daily basis. This process was on‐going and dynamic, but motivated through achieving a desired self or family life			√		√
Lohne et al	2010	Norway	PwMS	14	8	6	39‐66	To explore how PwMS experience and understand dignity in the context of a rehabilitation ward	Invisibility of MS symptoms may influence an experience of self as invisible, and the perception that needs are not respected, affecting dignity		√	√
Lynass and Gillon	2017	UK (Scotland)	PwMS	5	3	2	18+	To explore the experience of person‐centred counselling for PwMS	Counselling was found to be helpful. Empathy and non‐directive and non‐judgemental approaches were valued as were counsellor's knowledge of MS			√
Lynd et al	2018	Canada	PwMS	23	18	5	20‐72	To explore patient preferences regarding drug treatments	Patients consider the impact and likelihood of benefits and side‐effects when making drug treatment decisions		√	√
Maghsoodi & Mohammadi	2018	Iran	Women with MS	10	10		30‐62	To explore the process of restoring social esteem to women with MS in Iranian culture	Social esteem was severely affected by sense of abandonment, rejection from family and friends, financial problems and feeling a burden	√	√			√
Masoudi et al	2015	Iran	PwMS	23			20‐50	To identify experience of continuity of care for PwMS in Iran	Patients requested need for dignity and respect from carer givers, as well as empathy and knowledge of MS		√	√
Meade et al	2016	USA	PwMS	74			20‐81	To determine the benefits/quality outcomes of working for PwMS	Participants reported a range of motivations to work including compensation, personal well‐being and to help others		√	√		√
Moriya & Kutsumi	2010	Japan	PwMS	9	6	3	31‐57	To explore the impacts of fatigue in PwMS, especially in relation to social life and interpersonal relations	Fatigue has far reaching physical, psychological and social implications for PwMS		√	√		√
Moriya & Suzuki	2011	Japan	PwMS	17	13	4	20‐59	To ascertain differences in symptoms experienced by individuals with MS per disease severity	Characteristics of experiences may differ because of disease severity	√		√		√
Morley et al	2013	UK	PwMS experiencing spasticity	10	7	3	20‐69	To investigate the impact of spasticity on the lives of PwMS	Spasticity has physical, psychological and social consequences for people with MS		√	√		√
Mozo‐Dutton et al	2012	UK	PwMS	12	8	4	34‐71	To explore the impact of MS on perceptions of self	The physical body is intrinsically linked with sense of self; however, the onset of MS does not necessarily equate to a loss of self	√	√	√		√
Newland et al	2012	USA	PwMS who discuss symptoms	16	12	4	25‐58	To characterize the symptoms of PwMS in their own words	Certain common symptoms may be characterized by as association with other MS symptoms. This study found a need to develop a clinical tool to document changes in symptoms			√
Olsson et al	2010	Sweden	Women with secondary progressive MS	15	15		35‐70	To describe the meanings of feeling well for women with MS	Feeling well in women with MS influenced by finding a pace where 'daily life goes on' despite living with illness			√		√
Olsson et al	2011	Sweden	Women with secondary progressive MS	15	15		35‐71	To understand the meanings of being received and met by others as experienced a woman with MS	Women feel valued when accepted as 'normal' and disappointed/not valued when viewed as abnormal and constantly needing to justify their situation		√			√
Parton et al	2018	Australia	Mothers with MS	20	20		26‐54	To examine how women with MS construct and experience motherhood	Complexity of mothering with MS highlighted as women negotiate the fear of being a bad mother, as constructed by perceptions of self‐sacrifice and meeting their children's needs, with building resilience and character in their children. MS was a catalyst for some to engage in self‐care and provided a buffer from guilt	√		√	√	√
Parton et al	2017	Australia	Mothers with MS	20	20		26‐55	To understand how women with MS construct their sense of self as a mother	Women with MS identified negative and positive aspects of sense of self as a mother. Health professionals can assist women better knowing how they experience living with MS as a mother					√
Payne & Kathryn	2010	NZ	Mothers with MS	9	9		22‐45	To explore experience of mothers with MS, and elicit the strategies used to manage mothering and MS	Support is pivotal to mothers with MS, as is the need to conserve energy to manage fatigue		√	√		√
Ploughman et al	2012	Canada	Older PwMS	18	14	4	56‐81	To explore older people's experiences of ageing with MS	Dealing with loss and navigating barriers, especially in the areas of employment, independence and social participation are critical components of self‐management'	√	√	√	√	√
Plow & Finnlayson	2012	USA	PwMS	8	6	2	29‐58	To explore the experience of how PwMS participate in domestic life activities	Nutrition plays an important yet overlooked part in MS management – difficult symptoms, the social environment and a lack of information play a role in preventing PwMS from engaging in healthy eating behaviours		√	√		√
Pretorius & Joubert	2014	South Africa	PwMS	10	7	3	38‐71	To explore the experiences of PwMS in the South African (SA) Context	The study highlights several key challenges (diagnosis, daily life, invisible illness and medical aid) and resources (social support, mobility aids, religion and knowledge) for PwMS in SA	√	√	√		√
Riazi et al	2012	UK	PwMS in care homes	21	10	11	43‐80	To examine the experiences of care home residents with MS	Quality of life in care home residents could be improved by involving family, supporting transitions and improving access to services such as rehabilitation		√			√
Rintel et al	2012	USA	PwMS who had received mental health care	54	44	10	18+	To explore the experience of mental health care in PwMS	Mental health care should be provided upon diagnosis of MS, and providers should be familiar with MS	√	√	√
Russell et al	2018	Australia	PwMS with recent diagnosis	11	9	2	31‐70	To explore responses to diet after recent diagnosis of MS	Lack of information specific to MS, and specific to individuals with MS, surrounding dietary advice	√	√	√
Senders et al	2016	USA	PwMS	34	30	4	18+	To further understand how stress is addressed in the MS medical visit	Psychological stress in PwMS is not adequately addressed during medical visits		√			√
Sharifi & Abbaszadeh	2016	Iran	PwMS	13	6	7	28‐51	To explore the daily social interactions that affect the dignity of PwMS	A range of personal and social factors can affect perceived dignity of PwMS. Dignity can be promoted through moderation of dignity‐threatening factors, and improvement of dignity enhancing factors					√
Skar et al	2014	Norway	PwMS who recently completed rehabilitation	10	6	4	45‐61	To explore the experience of rehabilitation and how it might provide psychosocial benefits	Inpatient rehab instilled sense of community, recognition and empowerment in an environment where PwMS felt free from stigma			√		√
Skovgaard et al	2014	Denmark	PwMS	11	11		31‐39	To explore how people with MS consider the risks of combining conventional and complementary medicines (CAM)	PwMS considered CAM to be safe as guided by the 'naturalness' of treatments, their own body sensations, trust in their CAM practitioner and a lack of dialogue from their medical doctor		√
Skovgaard et al	2014	Denmark	PwMS	17	15	2	18+	To explore issues surrounding exclusive CAM use in pwMS	Use of exclusive CAM associated with beliefs and experiences of avoiding chemical substances, strengthening the body, increasing controls and participation in one's health, and maintaining body sensations which were seen as valuable in guiding treatments decisions		√	√
Smith et al	2015	NZ	Men with MS	18		18	36‐68	To examine fatigue and exercise experience of men with MS	Fatigue has physical and psychological consequences for men, but goal readjustment aids men to stay engaged in exercise			√		√
Smith et al	2011	NZ	PwMS who engage in community‐based exercise	10	10		28‐70	To explore how PwMS experience fatigue and how this influences participation in community‐based exercise	MS‐related fatigue is unpredictable and controlling. Regaining control over fatigue is a complex process influenced by multiple factors including feeling supported, managing limits and individual wellness philosophies/goals		√	√		√
Sosnowy	2014	USA	Women with MS	9	9		18+	To examine the experiences and perspectives of women who blog about their MS	Blogging provides an opportunity to gain information and resist dominant medical discourses		√
Soundy et al	2012	UK	PwMS involved in rehabilitation	11	7	4	42‐69	To understand how PwMS in a rehabilitation setting express hope	Despite acceptance of loss, meaning and values in their life, PwMS could defy their illness through maintaining hope and a sense of purpose in life. Physiotherapists need to support this process during rehabilitation			√	√	√
Stennett et al	2018	UK	Community dwelling PwMS	16	12	4	47‐72	To explore the meaning of physical activity to people with MS who live in the community	PwMS may describe a broad, multidimensional concept of physical activity that reflects social engagement, uncertain trajectories and coping with their illness			√		√
Stern & Goverover	2018	USA	Men with MS	3		3	50‐57	To present perspectives of everyday technology use for men with MS	Facilitating everyday technology use in men with MS may promote health and quality of life	√				√
Stone et al	2013	Canada	PwMS working in academia	35	20	10	33‐72	To explore academics with MS experiences of seeking employment accommodations	Academics with MS who seek workplace adjustments can be conceptualized in terms of needing to 'go through the back door' – concealing disabilities to avoid stigma			√		√
Strickland et al	2017	UK (Scotland)	Recently diagnosed PwMS	10	8	2	25‐45	To understand the impact of a diagnosis of MS	Diagnosis of MS results in a separation from the pre‐symptomatic self, to an evolving reconstruction of identity influenced by social roles, uncertainty, availability of health care	√	√			√
Tabuteau‐Harrison et al	2016	UK	PwMS	15	11	4	42‐67	To determine whether adjustment to MS is determined by social group factors	Social groups play an important role in adjusting to MS, and in continuing valued roles and relationships			√		√
Turpin et al	2018	Australia	PwMS who experienced fatigue	13	11	2	25‐67	To determine how individuals experienced MS fatigue	Fatigue is a challenging and debilitating MS symptom which is poorly understood and largely invisible to others			√		√
van der Meide et al	2018	Netherlands	PwMS	13	13		18+	Examines the bodily experiences of PwMS	People with MS experience the body through oscillating dimensions of bodily uncertainty, having a precious body, being a different body and the mindful body			√	√	√
Vijayasingham et al	2017	Malaysia	PwMS	10	6	4	25‐46	To describe how PwMS perceive and negotiate the long‐term course of their employment	Holistic life management decisions contribute to on‐going but also disrupted work trajectories	√		√	√	√
Willson et al	2018	Italy	Mothers with MS	16	16		N/A	To explore the perceived influence of MS on mothers in an Italian socio‐cultural context	MS can affect ability to participate in mothering tasks and cause subsequent feelings of difference and loss, influenced by a desire to stay in control and perceptions of stigma, which impact on women's identity as mothers	√		√	√	√
Yilmaz et al	2017	Turkey	Women with MS	21	21		23‐51	Explores the impacts of MS in women on sexual, physical and emotional functioning	MS influences uncertainty in terms of illness and marriage, affects sexuality and influences a perceived inadequacy to engage in the role of wife and mother. Women felt a lack of support and acknowledgement of the impacts of MS on their sexual lives			√	√	√

Domains and contexts: P1: Experiences of receiving the diagnosis; P2: Experiences of health services and health professionals; P3: Experience of managing physical and psychological symptoms; P4: Experience of disease progression and relapse; P5: Experiences and effects on work, social and family life.

Abbreviations: HCP, health care provider; MS, multiple sclerosis; PwMS, people with MS.