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Forster A, Ozer S, Crocker TF, et al. Longer-term health and social care strategies for stroke survivors and their carers: the LoTS2Care research programme including cluster feasibility RCT. Southampton (UK): NIHR Journals Library; 2021 Mar. (Programme Grants for Applied Research, No. 9.3.)

Cover of Longer-term health and social care strategies for stroke survivors and their carers: the LoTS2Care research programme including cluster feasibility RCT

Longer-term health and social care strategies for stroke survivors and their carers: the LoTS2Care research programme including cluster feasibility RCT.

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TABLE 8

Characteristics of workstream 1a interview participants

Name (pseudonym)Age (years)Time post stroke (months)Barthel/LUNSLiving circumstancesSummary of life pre stroke (as reported in interviews)Stroke impairmentsSummary of life after stroke (as reported in interviews)
Marilyn7043Moderate 12/low needs 0Lives with husbandShe and her husband were ramblers, went line dancing
  • Weakness in arm
  • Walking difficulties
  • Walks with stick for short distances
  • Uses wheelchair for longer distances
Watches television occasionally, goes to watch line dancing, attends weekly exercise group for multiple sclerosis
Mavis6043Moderate 17/low needs 1Lives with husband
  • Had a busy life, was able to do everything
  • Experienced tiredness as a result of fibromyalgia
  • Numbness on left side
  • Speech affected initially, but improved quickly
Watches television, goes out to the theatre and cinema, goes out for meals
Gordon6338Moderate 17/multiple needs 4Lives with wife and adult sonWorking delivering prescriptions, used to be happy
  • Fatigue
  • Impact on mood
  • Some concentration difficulties
  • Lack of strength in arm
Volunteers as a hospital appointments driver, listens to music, would rather be at home than go out socially
Ellie9037Moderate 18/multiple needs 3Lives aloneHas been a widow for > 20 years; her husband died of cancerNumbness on left sideGoes shopping, sees one or two friends, plays Scrabble, still able to drive, goes to church
Roger7442Independent 20/multiple needs 3Lives with wife
  • Retired
  • Went for long drives
  • Went swimming regularly
  • Spent time gardening
  • Impaired right side
  • Speech initially impaired
  • Struggles with writing
  • Lack of motivation
No longer able to drive, does exercises everyday, swims once a week, goes for a walk, gardens and goes for days out with wife
Robert8434Moderate 13/low needs 0Lives alone
  • Retired
  • Played golf with friends
  • Drove long distances
  • Loss of co-ordination
  • Tingling sensation in fingers
  • Lack of strength
  • Fatigue
Goes shopping, does not drive quite as far, sees his brother regularly, spends time gardening
Michael6339Severe 9/multiple needs 2Lives with wife
  • Bus driver before his first stroke
  • Walked the dog, spent time baking, went on holidays, did the garden
  • Drop foot
  • Impaired mobility
  • Uses wheelchair when he goes out
  • Fatigue
Goes out for a meal occasionally, watches television, spends most of his time in the house, can no longer drive
Lizzy7232Independent 20/multiple needs 6Lives alone
  • Life was spent with husband before he died from cancer
  • Was previously a nurse but became a chiropodist before the stroke
  • Member of the British Sugarcraft Guild; was the chairperson
  • Looked after the grandchildren
  • Speech impaired but improving
  • Short-term memory loss
Belongs to the British Sugarcraft Guild, gardens, listens to music and does not drive as far
Jimmy6947Independent 20/low needs 1Lives with wife and daughterRetired from working as an accounts manager, did not have an active hobby, did a lot of reading, spent time with daughter who has Down Syndrome
  • Difficulty walking initially, but improved with rehabilitation
  • Less patient
  • Fatigue
Attends stroke groups with his wife, goes to an active life class, can no longer drive. Spends time at home with his wife
Iris7640Moderate 18/multiple needs 6Lives alone
  • Went to Scottish dancing
  • Looked after her husband’s health before his death
  • Weakened right side
  • Impaired mobility
  • Walks with stick
Takes care of her home, leads dances now she is unable to participate, uses computer regularly, occasionally goes out with friends
Daphne7832Independent 19/low needs 1Lives with husbandPlayed bowls, did the gardening and housework
  • Speech affected initially, but has returned to normal
  • No physical impairment
Returned to playing bowls, does the gardening, does the housework, knitting
Cedric7536Moderate 16/multiple needs 9Lives with wifeGoing away in the caravan with his wife
  • Weakened right side
  • Impaired mobility
  • Walks with stick
  • Depression initially, overcome with medication
Goes away on short mini breaks with his wife in the UK, attends an IT class
Carla5436Severe 10/multiple needs 12Lives alone
  • Worked full time as a nurse
  • Previous heart problem,
  • Able to do all tasks around the house
  • Driver
  • Hobbies, for example horse riding
  • Depression/apathy
  • Weakened right side
  • Decreased cognitive function
  • Irritability
No longer works, spends a lot of time in her house, does not drive any more, spends time with boyfriend
Bob7343Independent 20/low needs 1Lives with wifeRetired from teaching, spent time looking after young granddaughter, in the process of selling their house, role as the cookSome speech impairment, lost confidence and motivation, lacks strength in legsAble to drive again, does the gardening, goes on holiday with his wife
Arnie7534Severe 2/multiple needs 6Lives with wifePrior to first stroke of six, he was president of the rugby club, worked full time lecturing, had busy social lifeImpaired speech, impaired mobility, impaired vision, short-term memory loss, weakened right side, walking difficulties, uses stick and wheelchairCan no longer drive, spends time with young grandson, goes for days out, watches television, reads the paper
Timmy669Moderate 15/multiple needs 4Lives aloneWorking as an engineer
  • Walks with trolley
  • Some weakness in legs
Goes walking every day, sees his family regularly. Spends a lot of time at home
Paddy539Independent 20/multiple needs 7Lives with wife, son and daughter
  • Worked as a ground worker
  • Socialised with friends, went out for meals, to the pub and watched football matches
  • Weakened right side
  • Impaired mobility
  • Walks with stick
  • Unable to work
Spends most of his time at home, watches television, goes for the occasional walk to the local shop
Maude7910Independent 19/multiple needs 5Lives with husbandAttended U3A group, did the cleaning and shopping
  • Speech affected initially, but has improved
  • No physical impact
Able to continue as she did before
Malcolm7112Independent 20/low needs 1Lives aloneGoing to car rallies, drinking at the social club, socialisingNo physical impairmentGoes walking near his house, still goes to social club but does not drink alcohol, still goes to car rallies
Lisa549Moderate 16/multiple needs 11Lives with husbandShe and her husband did not work prior to the stroke; spent a lot of time at home looking after the grandchildren
  • Weakened right side
  • Impaired mobility
  • Impaired speech
  • Difficulty writing
  • Wheelchair user
Majority of time spent at home, still sees family, goes out occasionally
Julia8410Moderate 18/multiple needs 2Lives with husband
  • Husband’s carer for the preceding 6 years
  • Engaged in activities such as an art class
  • Driver
  • No physical impairment
  • Initial memory loss
  • No longer drives
  • No longer drives
  • Looking for a different art class
  • Continues to care for husband
Jane8210Independent 20/low needs 1Lives aloneDid activities such as camping, knitting, bowlsNo physical impairmentContinues with all her hobbies as before, spends time looking after the house
Evelyn829Moderate 18/multiple needs 5Lives aloneWidowed, spent time drinking with husband, used to go to bowls, did the house workWeakened left side initially, balance affected, experienced depression, fatigueGoes shopping with her son, goes out to lunch with friends, does the crosswords, reads the paper, does some housework
Denise4711Independent 20/multiple needs 1Lives with husband
  • Worked full time in an opticians
  • Socialised with husband and friends (e.g. pub)
  • Impaired eyesight
  • Short-term memory loss
  • Irritability
  • Continues to work in the opticians
  • Still socialises with her friends and husband
David7610Independent 20/low needs 0Lives with wifeWent on holidays with wife, had a hotel, helped son out with his business
  • Speech affected initially, but has improved over time
  • Fatigue
Still goes on holidays with wife, goes walking, spends time with family
Charlie6210Independent 19/multiple needs 19Lives with wifeWorked in a recycling plant, loved watching rugby, spent a lot of time socialising
  • Procedural memory loss
  • Some depression
  • Fatigue
  • Outbursts of anger
  • No longer able to drive, no longer works
  • Plays the guitar, does some gardening, goes to the rugby
Cathy5411Independent 20/multiple needs 8Lives with teenage daughterWorked full time as a teaching assistant, was a governor at the school
  • Impaired speech
  • Weakness in arms, but improving
  • Lack of mobility in legs
  • Walks with stick, uses wheelchair out of house
  • Goes out with friends to local town
  • Spends a lot of time doing housework
  • Spends time with teenage daughter
Alfred789Independent 19/multiple needs 2Lives with wifePlayed table tennis five times a week, spent time reading
  • Speech initially impaired, but has improved
  • Lost ability to express himself
  • Reading and writing affected
  • Balance
  • Shorter tempered
Goes to the gym, walks at least every other day, no longer able to drive, goes on holidays, reads novels

U3A, University of the Third Age.

From: Appendix 1, Workstream 1a: full report

Copyright © Queen’s Printer and Controller of HMSO 2021. This work was produced by Forster et al. under the terms of a commissioning contract issued by the Secretary of State for Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK.

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