Experiences of receiving a diagnosis of multiple sclerosis: a meta-synthesis of qualitative studies

Figures & data

Figure 1. PRISMA flow diagram describing the literature search and screening process (Adapted from Moher et al. [34]).

Four-phase flow diagram showing numbers of identified records through searching, records screened and full-text articles assessed for eligibility, excluded studies with reasons for exclusion, and included studies. Thirty-seven articles included in the meta-synthesis in total.

Table 1. Themes and sub-themes derived from the studies reviewed.

Theme	Sub-theme	Number of studies	Study reference numbers
Overarching third-order theme #1: Receiving the MS diagnosis
Emotional reactions	Shock	14	[11, 14, 45, 49–51, 55, 58, 60, 61, 64, 65, 74, 75]
	Denial	14	[7, 11, 45, 51, 55–59, 61, 62, 68, 74, 75]
	Feelings of sadness and depression	21	[7, 8, 11, 45–47, 49, 51, 55, 58–62, 64–66, 68, 72, 74, 75]
	Feelings of hopelessness and helplessness	13	[10, 14, 45, 48, 51, 53–55, 59, 61, 65, 74, 75]
	Fear, anxiety and worry	29	[7, 8, 10, 11, 14, 45–47, 49–52, 54–56, 58, 59, 61, 62, 65–72, 74, 75]
	Anger	17	[7, 45–47, 49–51, 54, 55, 58, 59, 61, 62, 66, 68, 74, 75]
	Isolation and abandonment	15	[7, 11, 14, 47, 49–52, 54, 59, 61, 65, 66, 74, 75]
	Relief	13	[8, 11, 14, 51, 55, 58, 61, 62, 67, 68, 70, 74, 75]
External challenges, disruptions and barriers at diagnosis	Health professionals	21	[8, 10, 11, 46, 50, 51, 53–56, 58, 59, 61, 62, 64, 67–70, 74, 75]
	Family and friends	19	[7, 8, 11, 14, 45–47, 50, 51, 56, 57, 59–62, 65, 67, 74, 75]
	Diagnostic process	16	[8, 14, 50, 51, 54–57, 59, 61, 66, 68–70, 74, 75]
	Stigma and prejudice	16	[7, 10, 45–49, 51, 52, 56–58, 62, 65, 74, 75]
	Invisible symptoms	12	[7, 8, 11, 14, 50, 54, 55, 59, 61, 67, 68, 75]
Coping	Re-appraisal and re-evaluation	17	[7, 14, 47, 49, 50, 52, 57, 59, 61–63, 65, 71, 72, 74–76]
	Fighting spirit	4	[7, 49, 65, 75]
	Focusing on present	10	[7, 14, 49, 51, 54, 59–61, 65, 67]
	Thinking positive	13	[7, 46, 49, 51, 52, 55, 57, 59–61, 67, 75, 76]
	Self-management	13	[7, 8, 11, 48–51, 58, 61, 62, 67, 73, 76]
	Religious faith	5	[45, 46, 53, 61, 67]
	Seeking information	21	[7, 8, 10, 45, 46, 49–51, 53, 55, 57, 58, 60, 62–64, 67, 73–76]
	Acceptance	17	[7, 8, 14, 47, 49, 51–54, 57, 59, 61–63, 67, 68, 75]
	Denial and avoidance	21	[7, 8, 11, 47, 49, 51, 52, 54, 57, 58, 60–62, 64, 65, 67, 68, 73–76]
	Concealing diagnosis	13	[8, 45, 46, 49, 51, 57, 61, 62, 65, 66, 74–76]
Sense making	Making sense of the pre-diagnostic symptoms	11	[14, 49–51, 54, 55, 61, 67, 68, 74, 75]
	Negative/false perceptions	11	[7, 11, 45, 49, 52, 57, 59, 61, 66, 68, 75]
	Knowledge deficit	14	[8, 45, 46, 54, 56, 57, 61, 62, 65–67, 70, 74, 75]
	Uncertainty	22	[7, 8, 11, 14, 48–51, 53–55, 59, 61, 62, 64–68, 72, 74, 75]
	Questioning and seeking explanations	10	[46, 49, 53, 57, 65, 67, 68, 73–75]
	Coherence	22	[7, 8, 11, 14, 49–51, 53–55, 57, 59, 61–63, 65–68, 72, 74, 75]
Overarching third-order theme #2: Support and information needs of people around MS diagnosis
Emotional support needs	General emotional needs	19	[7, 11, 14, 47, 50, 52, 53, 55, 59, 61, 62, 64, 65, 67–70, 74, 75]
	Identifying and treating mood problems	11	[8, 10, 11, 45, 59, 61, 65, 68, 69, 74, 75]
	Emotional support from health professionals	25	[7, 8, 10, 11, 14, 45–48, 50, 52, 53, 55, 59, 61, 62, 64, 65, 67–70, 74–76]
	Emotional support from friends and family	8	[45, 46, 48, 57, 61, 64, 65, 74]
	Need for support groups and other services/interventions	8	[7, 10, 14, 48, 52, 61, 63, 75]
	Connecting with other people with MS and MS organisations	13	[7, 11, 45, 49, 56, 57, 60, 62, 63, 67, 74–76]
Informational needs	Diagnosis and illness specific questions	18	[7, 8, 10, 11, 45, 53, 55, 58, 61–65, 68–70, 74, 75]
	Service specific questions	7	[8, 10, 11, 56, 61, 62, 74]
	Need for educational interventions and information aids	7	[10, 62, 64, 69, 70, 74, 75]
	How to tell others/respond to them	3	[49, 61, 74]
	Public awareness	4	[10, 45, 46, 74]

Figure 2. A conceptual map of adjustment following MS diagnosis, representing the dynamic relationships between the themes identified from the synthesis.

‘Emotional reactions’ and ‘external challenges’ at MS diagnosis were grouped together as factors playing a role in ‘sense making’. Emotional and informational support, and coping skills were grouped as mediators because of their mediating role between adjustment, sense making and internal and external factors.

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