Clinical Rehabilitation 2000; 14: 315323

An observational study of the Stroke Association family support organizer service

Jennifer Harding and Nadina B Lincoln School of Psychology University of Nottingham, Nottingham, UK Received 19th March 1999; returned for revisions 13th May 1999; revised manuscript accepted 27th July 1999.

Objective: The aim was to investigate the role of Stroke Association family support organizers, in order to decide what outcome measures would be appropriate for evaluating their service. Design: Family support organizers (FSOs) were observed on home and hospital visits by an independent observer. Every two minutes recordings were made of the location, individuals present and activity taking place. Setting: FSOs working in the North-West and Midland regions of Britain. Results: The majority (71%) of visits took place in the patients home, with both patients and carers (39%). The most frequently occurring activities were enquiry (17%), task-related conversation (14%) and support-related conversations (14%). Comparison of FSOs showed variation in the time dedicated to each activity. Conclusions: FSOs spend more time engaged in practical rather than emotional activities. The role of the FSO is multifaceted. Evaluation of the FSO service needs to measure the patients mood and functional abilities, the carers mood and strain, and patients and carers knowledge and satisfaction with information and services.

Introduction Many stroke patients are cared for by either a spouse or a family member after discharge from hospital.1 The ability of carers to cope with changes in the individuals for whom they are caring can impact upon their own health. Carers need for support has been highlighted by subjective reports of carers feeling abandoned and isolated after discharge from hospital.2 Furthermore, carers may have unrealistic expectations with regard to patients outcome following stroke. Although carers can understand the
Address for correspondence: Jennifer Harding, Room 341, School of Psychology, University of Nottingham, Nottingham NG7 2RD, UK. e-mail: jjh@psychology.nottingham.ac.uk Arnold 2000

patients functional outcome, the personality differences and unpredictable changes in behaviour affect the carers quality of life and emotional stability.3 Thus carers seek supportive relationships to reduce the emotional strain experienced. Despite displaying strain equivalent to that of patients in a psychiatric setting, there has been a tendency for carers to be treated as a resource but not as people with their own needs.4 In addition, information about services available and the benets to which families are entitled is unclear, even three years after the initial stroke.5 Investigations of social support have shown positive effects. Patients show faster recovery from operations, injuries and illnesses,6 an improved survival rate and enhanced selfesteem with social support.7 Furthermore in hos02692155(00)CR332OA

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J Harding and NB Lincoln from a family support organizer for up to 12 months. However, a direct attempt to measure the benets of this service through a randomized controlled trial failed to demonstrate an effect on patient or carer health.16 Similarly, a randomized controlled study investigating the benets of specialist nurse intervention as a strategy to address psychosocial difculties after stroke failed to nd any benets from the intervention to patients perceived health and social activities or to carers stress.17 Despite research indicating a need for community provision of support for carers,5,6 and evidence of a relationship between subjective reports of support and stroke patients health,13 no randomized controlled trial has shown significant benets to either carers or patients emotional health. One explanation for this discrepancy is that the measures used in the randomized controlled trials were not sensitive to the interventions provided. Scales used to measure the benets of the service need specically to tap into the role of family support organizers, in order to demonstrate the effects of the service. Social support is not a unitary concept and family support provides a structured but far from unitary service. Prior to starting a randomized controlled trial to investigate the benets of the family support organizer service, this study was designed to record the activities of family support organizers, in order to select measures of the effects of the service. Method A list of all family support organizers (FSOs) working in the UK was obtained from a Stroke Association Information Centre. From this list, 16 family support organizers in a geographically convenient location were identied and contacted. The observer explained the aims of the research project and asked to spend one or two days observing the FSO. The observer did not specify with whom the visits were to be made, where the visits were to be made, or at what stage in the service provision (i.e. the initial contact, continuation visit or a discharge visit) the stroke patients were to be. A time sampling procedure was adopted, with

pitalized older adults, individuals who reported they needed less emotional support were found to show lower levels of distress.8 In a survey of quality of life and perceived social support of spinal injury patients, individuals who reported that they received social support from their community also believed themselves to be more adjusted to their spinal injury, and reported fewer physical health problems.9 Social support also benets the health of carers. Perceived burden reported by carers of individuals with multiple sclerosis has been predicted by perceived social support and satisfaction with coping.10 Psychosocial interventions with carers of Alzheimers disease patients have been found to reduce depression.11 In individuals who have recently lost a spouse, the support received from an intervention worker led to benecial outcome in terms of health and general adjustment.12 Studies such as these highlight the link between social support and health for both the patients and carers. In stroke patients the benets of social support have also been demonstrated. Patients who reported having a high level of social support were found to have a more rapid recovery after stroke than those who reported low levels of social support, leading researchers to propose that social support may be an important prognostic factor in recovery from stroke.13 Furthermore, the ability of family members to predict the attitudes of stroke patients has been shown to be associated with rate of recovery.14 In a randomized controlled trial both counselling and education for caregivers were found to have signicant benets upon carer knowledge and aspects of family function.15 Patients in the counselling group had better personal adjustment than patients in either the control or the education group. The Stroke Association Family Support service offers information, advice and emotional support to both patients and carers. The family support organizer aims to make contact with new stroke families and to offer advice, information, literature and emotional support. The family support organizer is responsible for giving the families information about other agencies, such as dysphasic support or carers groups, and for promoting secondary stroke prevention. Stroke patients and their carers receive visits and/telephone calls

Family support organizer service recordings made by the observer every two minutes on a predesigned observation schedule. The observation schedule was based on pilot visits with two family support organizers. The recordings were made from the onset of the visit until the FSO left either the patients home or the hospital ward. The observer recorded where the visit was taking place (living room, kitchen, hall, bedroom, bathroom, hospital ward), with whom the FSO was interacting (patient and carer, friend, noncarer family member, another professional, or other), and details of the activity taking place. The observation schedule had 16 categories for activities. The categories used are shown in Table 1. For each observation the observer also noted
Table 1 Category Reassurance Instruction Enquiry Assessment Social conversation Advice/information on benets Advice/information on medication Advice/information on health concerns Advice/information on support issues Advice/information on tasks Health-related conversation Support-related conversation Task-related conversation Stroke-related conversation Observation schedule categories Description Giving reassurance to the client(s) Telling the client(s) they should do something, e.g. to have regular blood pressure checks Asking the client questions, e.g. were they receiving any benets?

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down any comments, to give more specic information as to what activity the FSO and client(s) were engaged in. After all of the visits had been completed, the observer grouped the comments recorded for each of these conversation and advice/information categories (excluding social conversation). An independent researcher also grouped the comments and any differences between her groupings and the observers were discussed and then regrouped. Results Between January and May 1998 16 family support organizers (from 10 different family support organizer ofces) were observed for on average

Filling in either a discharge questionnaire or a benet form with the client(s) Conversation not related to the client(s) stroke/health/well-being, e.g. talking about a television programme Advising on benets, e.g. giving advice on different benets which client(s) may be entitled to Advising the client(s) about their medication, e.g. information on why some people take aspirin after their stroke Giving advice on health issues, e.g. information on the benets of giving up smoking Talking about support services, e.g. information on how to contact the community occupational therapist Providing the client(s) with task-related information, e.g. advice on performing daily living activities Talking about health concerns, e.g. reducing blood pressure Talking about support services, e.g. physiotherapy Talking about practical tasks, e.g. bathing Talking about the clients stroke, or to the input received from other professionals whilst the client was in hospital, e.g. physiotherapy previously received e.g. Giving a demonstration of how they carry out an activity of daily living task.

Physical activity No activity

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J Harding and NB Lincoln comments noted (with the exclusion of social conversation). Results are shown in Table 4. Overall there were no dominant themes within comment categories for advice or information. The FSOs spent time giving advice/information to carers as well as to patients. Within the conversation categories, support-related conversation was dominated by conversations relating to hospital/community services and informal support. Task-related conversation was dominated by conversations relating to personal care and mobility/transfer, and health-related conversation related to the health of the carers as well as the patients. The variation between FSOs was examined by separating and calculating as percentages of the
Table 3 Contact People with whom the FSOs interacted Observations (n ) Patient Carer Patient and carer Patient, carer, and family member/friend Patient and family member/ friend Patient and 2 x family member/friend Carer and 2 family member/friend Professional and 2 family member/friend Family member/friend No contact 221 80 310 78 39 10 17 15 16 6 Proportion of total (%) 28 11 39 9 5 1 2 2 2 1

three visits (range 17, SD 2). Observations were recorded for 45 FSO visits, giving a total of 792 observations. Of the 45 visits, 32 (71%) were made at the patients home. Most observations (81%) were recorded in the living room. The remaining 13 visits (29%) were made on a hospital ward. The breakdown of where visits took place is shown in Table 2. The majority of FSO interactions were with both the patient and their carer. Patients were present for 83% of the interactions, and carers were present for 61%. Results are shown in Table 3. Each visit in the home lasted on average 42 minutes (range 1682 minutes, SD 15 minutes). Each visit on a hospital ward lasted on average 12 minutes (range under 2 minutes to 48 minutes, SD 12 minutes). The frequency of activities observed is shown in Table 4. The most frequently occurring activity recorded was enquiry followed by task-related conversation and support-related conversation. The most frequently recorded category of advice was advice/information relating to support issues, which occurred almost twice as often as any other category of advice or information. There was little instruction or reassurance. Physical activity was only observed with two of the FSOs, who observed the patient or carer performing an activity of daily living. In one instance the FSO observed the patient walking, and in the other instance a carer demonstrated how a bath-board was used. Activities relating to either advice or conversation were grouped according to the further
Table 2 Location Hospital ward Home Location of the visits Visits (n) 13 32

Proportion of total (%) 29 71 Proportion of total (%) 81 4 2 1 1

Observations ( n) Location of visits within the home Living room Kitchen Hall Bedroom Bathroom 638 30 14 7 4

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Table 4 Activity Reassurance Instruction Enquiry Assessment Social conversation Advice/information on benets Stroke Association Grant Attendance Allowance Disability Living Allowance Incapacity benets Other None recorded Advice/information on medication Aspirin Other None recorded Advice/information on health Progress and recovery Psychological health Secondary prevention Physical problems General information on strokes and TIAs Other None recorded Advice/information on support Support clubs Family support and information centres Social services Hospital and community services Respite for carers Other None recorded Advice/information on tasks Communication Mobility and transfer Domestic Social activities Other None recorded Advice overall Health-related conversation Progress and recovery Psychological health issues Secondary prevention Physical health Carer and family health Other None recorded Activities observed during visits (with the exclusion of social conversation) Observations (n ) 14 6 134 7 84 22 6 2 1 2 6 5 9 2 5 2 45 9 6 5 5 4 7 9 79 11 14 12 11 10 8 13 19 4 3 1 2 8 1 174 94 5 11 9 14 18 17 20 Percentage of total (%) 2 1 17 1 11 3 27 9 5 9 27 23 1 22 56 22 6 20 13 11 11 9 16 20 10 14 18 15 14 13 10 16 2 21 16 5 11 42 5 22 12 5 12 10 15 19 18 21

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continued Observations ( n) 107 6 6 11 25 16 6 8 9 20 114 22 15 23 8 15 10 21 41 4 23 14 356 8 17 Percentage of total (%) 14 6 6 10 23 15 6 7 8 19 14 19 13 20 7 13 9 18 5 10 56 34 45 0.01 2

Table 4 Activity

Support-related conversation Support clubs Family support and information services Social services Hospital and community services Informal support Housing Benets and grants Other None recorded Task-related conversation Personal care Communication Mobility and transfer Domestic Social activities Other None recorded Stroke-related conversation Recounting stroke Hospital services received None recorded Conversation total (excluding social conversation) Physical activity No activity

total observations recorded for each FSO. Results are shown in Table 5. Reassurance, instruction, enquiry, assessment and no activity Out of these ve categories of activity, enquiry was the most frequently recorded, with all FSOs engaging in this activity on one or more of their visits. The mean percentage of time engaged in enquiry was 19% (SD 10%). Only a small percentage of time was spent engaged in either reassurance (mean 2%, SD 3%), instruction (mean 1%, SD 2%) or assessment (mean 2%, SD 5%). Advice/information on benets, medication, health, support and task-related issues The mean percentage of time spent giving advice was 23% (SD 12%). The most frequently recorded advice/information category was that for support-related issues, with 12 out of the 16 FSOs engaging in this activity in one or more

of their visits. The most frequently recorded advice/information category across FSOs was health-related issues, with 14 out of the 16 giving advice/information relating to health. Conversation relating to health, tasks, support and stroke The overall percentage of time engaged in conversation varied, but was almost a half of the total activities recorded (mean 42%, SD 11%). The most frequently recorded conversation category was task-related conversation, with all 16 FSOs engaging in this category. However three FSOs engaged in considerably more task-related conversation than the other 13 FSOs. All 16 FSOs also engaged in health-related conversation. Social conversation The majority of FSOs engaged in social conversation.

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Table 5 Activities engaged in by each family support organizer (percentages of the total observations recorded given in brackets) FSO Reassurance n (%) 0 1 0 0 1 1 1 1 0 1 1 1 4 0 1 1 (0) (2) (0) (0) (2) (1) (2) (1) (0) (6) (1) (3) (11) (0) (1) (1) Instruction n (%) 0 2 1 1 0 1 0 1 0 0 0 0 0 0 0 0 (0) (5) (3) (6) (0) (1) (0) (1) (0) (0) (0) (0) (0) (0) (0) (0) Enquiry n (%) 4 17 9 6 4 14 5 13 5 4 17 4 9 4 15 4 (27) (40) (23) (38) (9) (13) (10) (17) (17) (22) (16) (11) (25) (15) (21) (5) Assessment n (%) 3 0 0 1 0 0 1 2 0 0 0 0 0 0 0 0 (20) (0) (0) (6) (0) (0) (2) (3) (0) (0) (0) (0) (0) (0) (0) (0) Social conversation n (%) 1 1 9 1 9 6 5 8 4 1 18 0 0 0 8 13 (7) (2) (23) (6) (20) (6) (10) (11) (14) (6) (17) (0) (0) (0) (11) (17) Advice n (%) 1 5 7 2 7 28 16 18 5 4 12 11 13 15 18 12 (7) (12) (18) (12) (15) (26) (32) (25) (16) (22) (12) (31) (36) (56) (25) (15) Conversation n (%) 6 17 10 5 23 55 22 30 14 8 57 20 10 8 29 42 (40) (39) (26) (31) (51) (51) (44) (40) (48) (45) (54) (56) (28) (29) (40) (56) No activity n (%) 0 0 3 0 1 3 1 2 1 0 1 0 0 0 2 3 (0) (0) (8) (0) (2) (3) (2) (3) (3) (0) (1) (0) (0) (0) (3) (4)

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16

Discussion Analysis of the observations showed that the FSOs were involved in a variety of issues relevant to both patients and their carers. There were a few common topics of conversation relating to informal support, hospital and community services being received, carer health, personal care and mobility and transfers. The most frequently occurring advice/information category observed was related to support issues. However, within all the categories of advice/information there was a broad range of commonly covered topics observed (e.g. secondary prevention, progress and recovery). The broad range of issues covered can be accounted for by the varied needs of each of the clients and the unspecied nature of the visits on which the FSO was observed. The observations recorded indicated that the majority of the FSOs time was spent engaged in practical rather than emotional activities. Little time was spent reassuring the clients. Emotional support may have been occurring indirectly through the provision of practical information or through the follow-up telephone conversations with FSOs. The observations were all made on visits and so other types of contact were not analysed. The FSOs may be providing such support through the continuity that the service offers, and the fact that the service is always

there for patients to contact, rather than as an activity performed on visits. A limited amount of time was spent with carers in the absence of the patients. This may limit the extent to which the FSOs can support the carers needs as well as those of the patients. FSOs were observed engaging in conversation relating to carers health for the same amount of time as they engaged in conversation about the patients, and the FSOs may have had the opportunity to speak to the carers and to review their needs by telephone. However some FSOs did report that they believed the service was for the family as a unit, and that everyone should be present on visits.

Clinical messages Family support organizers (FSOs) spend most of their time facilitating independence, therefore ADL measures are appropriate outcomes for the service. FSOs spend as much time with carers as patients, therefore carer outcomes need to be assessed. FSOs provide information and therefore knowledge is an appropriate outcome measure.

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J Harding and NB Lincoln and carer satisfaction with, and knowledge about, different services. There are a number of limitations to this study. First, it would be more accurate to observe all of the FSOs working in the UK in light of the variations discussed above. However they were chosen to be a representative sample and no systematic bias is therefore likely. Secondly, in observing only what the FSOs did, what they were aiming to achieve was not measured. Thirdly, the FSOs along with the patients and carers, may have been inuenced by the presence of an observer. Finally, much of the FSOs time is also spent attending multidisciplinary meetings and liaising with other professionals on the patients behalf. This indirect support that the FSO service offers patients was not investigated. However, the study suggests that the main roles of the FSO service are to give information and advice about performing everyday tasks and contacting other services, and these need to be measured in a randomized controlled trial to evaluate the service. Acknowledgements We would like to thank all of the family support organizers involved in this study for their time, the Stroke Association for nancial support, and Liz Peel for coding the data. References
1 Wilkinson PR, Wolfe CD, Warburton FG et al. A long-term follow-up of stroke patients. Stroke 1997; 28: 50712. 2 Pound P. Lives with stroke. PhD thesis, London University, 1996. 3 Anderson CS, Linto J, Stewart-Wynne EG. A population-based assessment of the impact and burden of caregiving for long-term stroke survivors. Stroke 1995; 26: 84350. 4 Gilleard CJ. Problems posed for supporting relatives of geriatric and psychogeriatric day patients. Acta Psychiatr Scand 1984; 70: 198208. 5 Greveson GC, Gray CS, Fench JM, James OF. Long-term outcome for patients and carers following hospital admission for stroke. Age Ageing 1991; 20: 33744. 6 DiMatteo RM, Hays R. Social support and serious illness. In: Gottlieb B ed. Social networks and social support. Beverly Hills, CA: Sage, 1981. 7 Funch DP, Marshall J. The role of stress, social

The amounts of time dedicated to each activity varied between FSOs. All FSOs engaged in both health-related and task-related conversation as well as enquiry. The FSOs role was therefore multifaceted. The variability between FSOs can be accounted for by numerous factors, including the broad and unstructured nature of the job. FSOs come from differing backgrounds, for example nursing, speech and language therapy and citizens advice. Also, client needs vary in different geographical areas, for instance, in some areas there is a higher demand for grants than in other regions. Also, resources provided by health services vary. In certain areas other agencies overlap with the FSO services. Finally, the fragmented nature of the service nationally seems likely to add to the variability in the FSO service because the FSOs tend to develop their own style of working. In the light of the activities recorded and previous research, outcome measures for evaluating the FSO service need to assess three main areas. First, patients mood and functional abilities. It is expected that the FSO will have a positive effect upon a patients mood. Functional abilities will be assessed as the FSO service helps patients to access community services (e.g. through giving information on physiotherapy) which it is expected will be of indirect benet to their ability to carry out activities of daily living. Secondly, as the FSO service is aimed at supporting the family as well as the patient, carer mood and strain should be assessed. Thirdly, knowledge and satisfaction with information and services received should be assessed. The observations illustrated that a large proportion of the FSOs time is spent facilitating patient and carer knowledge about strokes, health care services and practical activities of daily living. In Dennis and coworkers16 evaluation of the FSO service, patients who received the FSO service were more satised with the amount of information received about recovery, with knowledge of who to contact with stroke-related problems, and more satised that someone had listened and understood their needs since their stroke. FSOs also act as a network for other services by giving patients and their carers information about accessing services (e.g. community occupational therapy, benets). Therefore, questions will also investigate patient

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support and age in survival from breast cancer. J Psychosom Res 1983; 27: 7783. Wilcox VL, Kasl SV, Berkman LF. Social support and physical disability in older people after hospitalization: A prospective study. Health Psychology 1994; 13: 170-179. Anson CA, Stanwyck DJ, Krause JS. Social support and health status in spinal cord injury. Paraplegia 1993; 31: 632-8. Knight RG, Devereux RC, Godfrey HP. Psychosocial consequences of caring for a spouse with multiple sclerosis. J Clin Exp Neuropsychol 1997; 19: 719. Mittleman MS, Ferris SH, Shulman E et al. A comprehensive support program: effect on depression in spouse-caregivers of AD patients. Gerontologist 1995; 35: 792802. Raphael B. The Anatomy of Bereavement. A Handbook for the Caring Professions. London: Routledge, 1992.

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13 Glass TA, Matchar DB, Belyea M, Feussner JR. Impact of social support on outcome in rst stroke. Stroke 1993; 24: 6470. 14 Robertson EK, Suinn RM. The determination of rate of progress of stroke patients through empathy measures of patient and family. J Psychosom Res 1968; 12: 18991. 15 Evans Rl, Matlock AL, Bishop DS, Stranahan S, Pederson CK. Family intervention after stroke: does counselling or education help? Stroke 1988; 19: 124349. 16 Dennis M, ORourke S, Slattery J, Staniforth T, Warlow C. Evaluation of a stroke family care worker: Results of a randomised controlled trial. BMJ 1997; 314: 107176. 17 Forster A, Young J. Specialist nurse support for patients with stroke in the community: a randomised controlled trial. BMJ 1996; 312: 164246.

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