Cohort study of informal carers of first-time stroke survivors: Profile of health and social changes in the first year of caregiving

doi:10.1016/j.socscimed.2009.04.007

Social Science & Medicine

Volume 69, Issue 3, August 2009, Pages 404-410

https://doi.org/10.1016/j.socscimed.2009.04.007 Get rights and content

Abstract

Informal carers underpin community care policies. An initial cohort of 105 informal live-in carers of new stroke patients from the South Coast of England was followed up before discharge, six weeks after discharge and 15 months after stroke with face-to-face interviews assessing physical and psychological health, and social wellbeing. The carer cohort was compared to a cohort of 50 matched non-carers over the same time period. Carer distress was common (37–54%), started early on in the care-giving experience and continued until 15 months after stroke. Carers were 2.5 times as likely as non-carers to have significant psychological distress. Presence of early distress predicted 90% of those significantly distressed 15 months after stroke. Female carers were likely to develop distress earlier than male carers and in anticipation of the care-giving situation. Male carers developed similar levels of distress but only once the care-giving situation became reality. Further research is needed to establish ways to screen for psychological distress early after onset of caregiving, to find ways to tailor proven support interventions to the individual carer, and to evaluate the effect of early detection and support provision on later carer distress.

Introduction

Stroke is a common condition. In the UK, prevalence is 2.4% in men and 2.2% in women (Office for National Statistics, 2003). Three quarters are over the age of 75 and 80% of those that survive return home (Royal College of Physicians, 2006), many looked after by informal carers. The number surviving may increase with the introduction of routine use of thrombolysis post-stroke (Wardlaw, Zoppo, Yamaquchi, & Berge, 2003), so health and social care of stroke survivors in the community is likely to become an increasing priority over the next decade.

Informal carers are friends or relatives who look after the stroke survivors' needs for no payment. In the UK, carers' assessments were first mentioned in the Carers (Recognition and Services) Act (Department of Health, 1996). Any carer can ask for an assessment of their own needs from a social work or other health or social care professional, when the person they are caring for is having an assessment of their needs. In 2004, the Carers Equal Opportunities Act (Office for Public Sector Information, 2004) placed a duty on social services departments to inform carers of their right to an assessment and enabled social services to refer carers to other services.

Around 40% of informal carers of stroke survivors in the community suffer psychological distress defined in terms of perceived stress, depression, or general subjective wellbeing (van Puymbroeck and Rittman, 2005, Visser-Meily et al., 2005). Factors predicting distress have been investigated but findings are contradictory. The most consistent are that carers tend to be more distressed if they have more physical symptoms themselves; employ certain coping mechanisms (suppression, avoidance and/or venting); have less social support; or look after stroke survivors who are more dependent, have abnormal or disruptive behaviour or are depressed themselves (Pinquart & Sörenson, 2003a).

As part of a cohort study following a group of co-habitant or day-to-day informal carers of first-time stroke survivors from the time of the stroke until 15 months afterwards, this study examined carer health and social changes before and after discharge of the stroke survivor home, and changes in carer health and social support over the first year of hands-on caring. The aim of the study was to determine when assessments should be done, factors that should be taken into consideration during assessment, and whether carers likely to suffer long-term distress could be detected early on. This paper reports those findings.

Section snippets

Method

Co-habitant carers of stroke survivors were identified through stroke patient records from two UK in-patient stroke units on the South coast of England in 2002 and 2003. These were both specialist consultant-led units comprising multidisciplinary teams with a special remit to care for patients admitted with a diagnosis of stroke. Ethics approval was gained from both Southampton and South East Hampshire, and East Dorset Local Research Ethics Committees prior to starting the study.

Consecutive

First interviews

Over the recruitment period, 147 stroke patients had carers suitable for inclusion and 105 carers underwent initial interviews. Forty-one carers were identified but not interviewed because the stroke victim was placed into residential care (16 carers), died (13 carers), or was discharged home before initial interviews could take place (12 carers). One carer declined to participate. Characteristics of carers and non-carers recruited are summarized in Table 1.

As non-carers were recruited when

Discussion

This study followed an initial cohort of 105 first-time stroke patients and their carers for 15 months after stroke. The key finding was that carers were 2.5 times as likely as non-carers to have significant psychological distress, which was detectable earlier for women than for men. Significant levels of psychological distress detected early, were a strong predictor for finding carer distress a year later. There was also an adverse effect of caring on physical health, although this effect was

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^☆: This study was funded with a National Health Service Research and Development Regional Fellowship. It was carried out with permission of the Royal Bournemouth and Christchurch NHS Trust and Southampton University Hospitals Trust.

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Cohort study of informal carers of first-time stroke survivors: Profile of health and social changes in the first year of caregiving☆

Abstract

Introduction

Section snippets

Method

First interviews

Discussion

Social Science & Medicine

Lancet

Social Science & Medicine

A prospective study of acute cerebrovascular disease in the community: the Oxfordshire Community Stroke Project 1981–1986. 1. Methodology, demography and incident cases of first-ever stroke

Journal of Neurology Neurosurgery and Psychiatry

A quantative study of the emotional outcome of people caring for stroke survivors

Stroke

Evaluation of a stroke family care worker: results of a randomized controlled trial

BMJ

Carers (Recognition and Services) Act 1995: Policy Guidance

Indices of deprivation 2000

Distress and perceived health: mechanisms of health decline

Journal of Health and Social Behavior

Information provision for stroke patients and their caregivers

Cochrane Database Systematic Review

Self-rated health and mortality: a review of twenty-seven community studies

Journal of Health and Social Behavior

The national psychiatric morbidity surveys of Great Britain-initial findings from the Household Survey

International Review of Psychiatry

Training carers of stroke patients: randomized controlled trial

BMJ

Adaptation to stroke: a longitudinal study of depressive symptoms, physical health, and coping process

Top Stroke Rehabilitation

The Philadelphia Geriatric Center Morale Scale: a revision

Journal of Gerontology

Measuring psychiatric disorder in the community: a standardized assessment for use by lay interviewers

Psychological Medicine