Table 3

Coding tree of time 1 and time 2 interviews

ThemesSubthemesParent codesAssociated child codes
Transitioning to SPMS and challengesInitial reaction to the transition.SPMS diagnosis.Time of diagnosis.
It’s easy to say SPMS.
Before diagnosis.
Before knowing.
Now I know.
Finding out (tests, hospitals, MRI and lumber puncture).
Being informed.
I knew I had SPMS.You know you’re on secondary.
MS is part of me.
It was a shock.Shock of diagnosis.
I can’t do things I enjoy.It’s not a good disease.
Cannot do things.
Cannot do things I used to enjoy.
Can’t walk.
Can’t wear normal clothes.
Progression is slow.Progression: creeps up on you.
Progression is slow.
Worsening of symptoms and emotional shifts.Symptoms getting worse.Various symptoms.
Progression is scary.
MS is serious.
Depression before diagnosis.I was diagnosed with depression before.
Depression after diagnosis.Tormented.
Depression diagnosis.
Thinking of nothing else.
It’s hard.
I’m afraid/embarrassed.Embarrassing.
Weight gain is depressing.
Fear of the unknown.
I’m not as frightened anymore.
I feel I’m a burden.Annoyed.
Arriving at the point of no help.Contact with MS healthcare professions.General hospitals don’t understand MS.
Dealing with medics.
Neurologists’ appointments.MS nurses.
Nothing to offer.Getting medical help.
Support services: currently offered and future.There is nothing for SPMS.
Psychological support would have been good at diagnosis.
I’d like to just talk to someone who understands MS.
Adaptive tasks and changes overtimePlanning activities or scaling down activities.Holidays.Planning holidays.
Planning in advance.Cannot plan in advance.
Need to plan meticulously.
Use of diaries/reminders.
If you can’t do it, do it differently.Partner showed me a wheelchair is good.
Small things but meaningful.
It’s silly to rebel.
Can’t do much.Bad days: I do nothing but rest.
Can’t exercise.
Life is dull.
Knowing my limits.
Emotional regulation.Distractions.Sleeping.
Daytime TV.
Video games.
Help from partner/family.Partner helps emotionally.
Being outdoors.
Couldn’t cope without my partner.
Harder if you’re on your own.
Partner looks after me.
Partner control.
Partner gets angry.
Not thinking/talking about the future.Reading about MS.
I don’t like to talk about it.
‘Things could have been worse’.A frame of mind.
Men cope better.
Young people cope better.
Being social, fitting in and being of use.Accessibility problems.Disrespectful people.
Accessibility issues.
MS group meetings.Exchanging info.
Comparing with other people.
Comparing with other patients.
Partner organised support group.
Family visits.Grandchildren don’t understand.
We’re trying to be normal.
We do things for the family.
Family life.
Friendships.Revealing MS.
I don’t look ill.
I have very good friends.
Voluntary work.Helping others with MS.
I wish I could help.
  • MS, multiple sclerosis; SPMS, secondary progressive multiple sclerosis.