Improving services for younger stroke survivors and their families

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People who have a stroke experience asudden onset of disability; about half are leftwith a permanent handicap 1 . Damage mayresult in both physical and mentalimpairment. Stroke impacts on both patientand their families 2,3 and research hasdemonstrated that many family care giversexperience difficulty coping with their caringrole.MethodThe study adopted a longitudinal approachcollecting data from young stroke survivors(YSS) and their relatives or carers (RorC),over a period of nine months, as well asfrom key informants including hospitalconsultants, stroke nurses, therapists,project managers, and voluntary sectorworkers.The first interviews were carriedout 3-6 months post-discharge fromhospital, and the second 6-9 months later.Between interviews participants wereinvited to keep a diary.The first interviews used the Lifegridmethod 4 , and took participants back tothree months prior to the stroke, in orderto ascertain what was happening in theirlives at that time, and then covered theperiod up to the interview. Participants alsocompleted the SF36, which wasincorporated into the interview.The secondinterview took up from where the firstinterview finished, and built on informationderived from the diaries, where available.Although interested in all ‘younger’ adultsexperiencing a stroke, a decision was takento focus on those aged 18-49 years in orderto concentrate on individuals who werelikely to have been economically active andmight have dependent families. FiftyYSS/RorC dyads were recruited at time 1,with 29 YSS and 24 RorC interviewed againat time 2.The research was carried out in four NHSHealth Boards across the central belt ofScotland, with participants in the study livingin a variety of socio-economiccircumstances.Twenty-nine YSS were male and 21 female.Four out of five lived with the RorC whotook part in the study; six lived alone. Justunder half the YSS lived with dependentchildren/young people aged less than 20.Two-thirds of RorC were partners orspouses and another seven were parents,with the remainder were siblings, offspring,and friends. Two-thirds of RorC werefemale, and one third male; the youngestwas in their twenties, the oldest over 80.Interviews were taped and fully transcribed.Analysis of qualitative data was carried outusing NUDIST, a computer package for theanalysis of qualitative data. Quantitativedata were analysed using SPSS.5Improving services for younger stroke survivors and their families
6ResultsThe NHS in Scotland is undergoing change,and while this research was being carriedout stroke services across the countrywere in a state of flux. We foundconsiderable disparity in the move toprovide care for more patients in strokeunits, together with fast track clinics forpeople experiencing minor strokes ortransient ischaemic attacks (TIAs). Despitedifferences in the rate of progress betweenhealth board areas the findings from thisstudy indicate that ‘seamless care’ continuesto be an aspiration rather than a reality.Stroke patients require a clear pathwayfrom the time of the event to maximumrecovery. Sufficient flexibility should beavailable to accommodate differences in age,gender, family commitments/circumstances,and of particular importance to youngerpeople, what they are likely to be able toachieve in terms of returning toemployment. The findings from this studywill be presented in chronological order toreflect the patient journey:• Recognising stroke and seeking assistance• Admission to hospital•Inpatient stay• Discharge from hospital• Coping in the community•Moving onAs with all staged approaches some YSS willcomplete their journey more quickly thanothers. Recommendations focus on timeperiods or incidents, which resulted inparticipants in this study experiencingdifficulty or not feeling supported. In someinstances the same recommendations areincluded more than once so that issuesmissed at one stage will be picked up later.Examples of good practice are alsohighlighted.While some recommendationshave resource implications, others involveminor changes in working practice and/orawareness-raising amongst healthprofessionals.Improving services for younger stroke survivors and their families
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