CARER TRAINING PROGRAMME

Principal Investigator: Lalit Kalra

Guy's, King's & St Thomas' School of Medicine, London England

Caregiver Intervention Description

The intervention consisted of therapist and nurse delivered training to caregivers in defined areas but delivered as the professional felt appropriate to patient and caregiver needs. These were then checked against a competency checklist and further training provided if necessary. Most interventions were stroke specific because of the specialisation of the clinical area in which the interventions were developed.

The stroke rehabilitation unit

All patients in the study were managed on a stroke rehabilitation unit. This care was provided by a stroke physician supported by a multidisciplinary team with specialist experience in stroke management. There was a culture of joint assessments, goal setting, coordinated treatment and discharge planning. A coordinated multidisciplinary approach was adopted towards rehabilitation with emphasis on early mobilisation. All patients had an individualised rehabilitation plan with clearly defined goals based on joint assessments. Patient participation was encouraged with focus on motivation and providing an enriched environment.

Medically stable stroke patients were assessed comprehensively for need and the home environment, previous functional status and expectations of rehabilitation outcome. These issues and post-discharge support available were discussed with patients and their families. The goals of rehabilitation were set by the team, against which the patients' subsequent progress was measured. A plan of management, individualised to each patient's needs was formulated and communicated to the various professionals involved in the patients' care, the patient and the family. All patients were screened and managed for stroke risk factors and secondary prevention. There was close liaison between various disciplines with problems being addressed as they arose. Discharges were planned in advance and spouses and relatives were encouraged to participate in the rehabilitation process.

Caregiver Training in Personal Care Skills
Existing practice

The existing practice at the commencement of the study was for the stroke coordinator or the named nurse to:

1. introduce themselves to the patient/caregiver as the lead person responsible for patients’ care and communication.


2. provide information on patients’ general condition including diagnosis, results of investigations and assessments, expected outcomes and rehabilitation plan.

3. explain the ward routine and rehabilitation practices, clothing requirements and visiting times.

4. point out information sheets and other stroke related material available.

5. provide secondary prevention advice.

6. invite caregivers to observe therapy sessions and ask therapists about specific aspects relating to the patient.

7. request caregivers to participate in training sessions if the therapist believe there is a specific need to do so.

8. undertake caregiver assessments to determine the specific needs of individual carers which needed to be addressed prior to discharge.

9. discuss home visit assessments, discharge plans and post-discharge arrangements with patients and caregivers.

There was no formal requirement to participate in “hands on” training for carers although those wishing to receive such instruction were accommodated within the rehabilitation programme. A formal assessment of skills acquired or competence of caregivers in providing for basic physical and functional needs of patients was not undertaken.

Intensive training developed for the project

In addition to the above, formal training sessions for caregivers were arranged. These included sessions with:

multidisciplinary team: to provide specific information about patients deficits and expected recovery in the areas of mobility and transfers, speech, washing and dressing, memory, personality and mood changes, diet and swallowing, vision and reading.

medical team: to receive individualised advice on control of blood pressure, use of antiplatelet/anticoagulation, smoking and physical activity.

speech therapist/dietician/nurses: to ensure that they had adequate knowledge about appropriate diet, feeding techniques, use of specialist equipment if necessary.

speech therapists: for communication and comprehension.

physiotherapists: for positioning of limbs, transfers, mobility moving and handling skills.

occupational therapists: for washing, dressing and toiletry needs, management of apraxias and perceptual problems.

nursing staff: for management of continence, pressure areas, constipation and medication.

These sessions were organised when the level of patient’s residual disability had stabilised and the multidisciplinary team believed that they had reached a stage where discharge was contemplated. Each session was designed to last 30-45 minutes and caregivers participated in “hands on” training under the supervision of the relevant therapists. There was a formal assessment of the competence of carers following the training sessions using a predetermined schedule.

A schedule of training activities and assessments has been outlined in Appendix II.

Psychological Support

Caregivers were introduced to support workers trained in basic aspects of management of stroke impairments and disabilities, counselling and benefits advice during hospital rehabilitation. This was provided for a minimum of six months unless specifically asked to withdraw by the caregiver. The support worker was required to:

  • provide information on available health, social and voluntary services and access these services.
  • help patients/caregivers to complete applications for services, aids and adaptations, benefits and allowances to statutory agencies.
  • undertake regular home visits after discharge to provide support during the transition from hospital to home care.
  • contact local services, including GPs, health workers and social service staff in case of problems with the patients’/carers’ permission.
  • provide rapid support where there is a crisis or a change in circumstances or where a caregiver specifically requests input.
For additional information regarding the intervention, please contact:

Lalit Kalra
Professor of Stroke Medicine
Dept. of Diabetes, Endocrinology and Internal Medicine
Guy's, King's & St Thomas' School of Medicine
Denmark Hill Campus, Bessemer Road
London SE5 9PJ

For More Information:

Williams, L. S., Kroenke, K., Bakas, T., Plue, L. D., Brizendine, E., Tu, W., Hendrie, H. (2007). Care Management of Poststroke Depression: A Randomized, Controlled Trial. Stroke 38: 998-1003

Draper, B., Bowring, G., Thompson, C., Van Heyst, J., Conroy, P., Thompson, J. (2007). Stress in caregivers of aphasic stroke patients: a randomized controlled trial. Clin Rehabil 21: 122-130

Van Pelt, D. C., Milbrandt, E. B., Qin, L., Weissfeld, L. A., Rotondi, A. J., Schulz, R., Chelluri, L., Angus, D. C., Pinsky, M. R. (2007). Informal Caregiver Burden among Survivors of Prolonged Mechanical Ventilation. Am. J. Respir. Crit. Care Med. 175: 167-173

Young, J., Forster, A. (2007). Review of stroke rehabilitation. BMJ 334: 86-90

Redfern, J., McKevitt, C., Wolfe, C. D.A. (2006). Development of Complex Interventions in Stroke Care: A Systematic Review. Stroke 37: 2410-2419

Grasel, E, Schmidt, R, Biehler, J, Schupp, W (2006). Long-term effects of the intensification of the transition between inpatient neurological rehabilitation and home care of stroke patients. Clin Rehabil 20: 577-583

Christakis, N. A., Allison, P. D. (2006). Mortality after the Hospitalization of a Spouse. NEJM 354: 719-730

McCullagh, E., Brigstocke, G., Donaldson, N., Kalra, L. (2005). Determinants of Caregiving Burden and Quality of Life in Caregivers of Stroke Patients. Stroke 36: 2181-2186

Hokenstad, A., Hart, A. Y., Gould, D. A., Halper, D., Levine, C. (2005). Closing the Home Care Case: Clinicians' Perspectives on Family Caregiving. Home Health Care Management Practice 17: 388-397

Mant, J, Winner, S, Roche, J, Wade, D T (2005). Family support for stroke: one year follow up of a randomised controlled trial. J. Neurol. Neurosurg. Psychiatry 76: 1006-1008

Robinson, L., Francis, J., James, P., Tindle, N., Greenwell, K., Rodgers, H. (2005). Caring for carers of people with stroke: developing a complex intervention following the Medical Research Council framework. Clin Rehabil 19: 560-571

Dobkin, B. H. (2005). Rehabilitation after Stroke. NEJM 352: 1677-1684

Jonsson, A.-C., Lindgren, I., Hallstrom, B., Norrving, B., Lindgren, A. (2005). Determinants of Quality of Life in Stroke Survivors and Their Informal Caregivers. Stroke 36: 803-808

Wade, D. (2005). Investigating the effectiveness of rehabilitation professions - a misguided enterprise?. Clin Rehabil 19: 1-3

Hankey, G. J (2004). Informal care giving for disabled stroke survivors. BMJ 328: 1085-1086

Patel, A., Knapp, M., Evans, A., Perez, I., Kalra, L. (2004). Training care givers of stroke patients: economic evaluation. BMJ 328: 1102- 1106


CARER SUPPORT PROGRAMME (Appendix II)

NAME OF CARER: STARTING DATE:

NAME OF RELATIVE: END DATE:

Structure and Process
Competence assessment

1] Stroke co-ordinator(SC)/Ward Sister (WS) will introduce the her/himself and the named nurse to the carer. Carer will be informed of the relative’s condition.

1] To demonstrate knowledge that the relative has had a stroke.

2] SC/WSwill provide carer with a copy of leaflet named Information for Patient and Their Relatives and Friend - “Rehabilitation - The Stroke Unit”. Ensure that carer reads the booklet and encourage carer to raise any queries.

2] To demonstrate an understand of what a stroke is.

3] SC/WS will identify and explain relative’s specific stroke related problems to the carer:-

speech [Yes] [No]

mobility [Yes] [No]

memory [Yes] [No]

personality and mood changes [Yes] [No]

diet and swallowing [Yes] [No]

vision and reading [Yes] [No]

washing and dressing [Yes] [No]

transfer and walking [Yes] [No]

3] To demonstrate knowledge of the specific problem associated with her/his relative following a stroke.

4] Having specified the associated problems above, the SC/WS will explain the neurological deficits and expected recovery pattern.

4] To demonstrate an understanding of the relative’s limitation, that recovery may not be complete and there may be residual unresolved problems.

5] SC/WS will advice on:

control of blood pressure, use of aspirin/ warfarin, smoking, diet, exercise and prevention of excessive weight gain.

5] To demonstrate knowledge of the importance of healthy life style and prevention advice.

6] SC/WS will ensure that carer is invited to the monthly CISS seminar. Explain post discharge arrangements e.g. home visit findings and recommendations, support from CISS, type and frequency of services arranged by social services, support from the hospital stroke team and GP.

6] To demonstrate knowledge of where and whom to ask for help after discharge.


Structure and Process
Competence assessment

7] Named nurse (NN)/Multidisciplinary team (MD) will arrange for the carer to be present when the relative is seen by the dietician/speech therapist and to ensure that the carer acquire knowledge of appropriate diet, feeding technique, use of specialist equipment if necessary.

7] To demonstrate an understanding of dietary needs and feeding technique.

8] NN/MD team will arrange a training session with the speech therapist for communication and comprehension. (if relative’s condition necessitate this support).

8] To demonstrate knowledge of how to communicate with dysphasic relative (if necessary).

9] NN/MD team will provide information on washing, dressing and toiletry needs.

9] To demonstrate knowledge of how to manage relative’s personal washing, dressing and toiletry needs.

10] NN/MD team will provide carer with information on positioning of limbs and management of pressure areas.

10] To demonstrate knowledge of the importance of changing flaccid/spastic limbs position i.e. prevention of pressure sores, blood circulation, maintenance of skin integrity.

11] NN/MD team will teach carer continence management (if relative’s condition necessitate this support)

11] To demonstrate knowledge of continence management.

12] NN/MD team will teach carer bowel management, fluid and dietary intake for the prevention of constipation.

12] To demonstrate an understanding of bowel management and the prevantion of constipation.

13] NN/MD team will ensure that carer attend physiotherapy sessions with the relative. Arrange training session for [a] safe transfers [b] safely assist mobility [c] knowledge of floor routine following a fall [d] safely assist in climbing stairs [e] good use of wheelchair [f] use of aids.

13] To demonstrate knowledge of [a] safe transfers [b] safely assist mobility [c] knowledge of floor routine following a fall [d] safely assist in climbing stairs [e] good use of wheelchair [f] use of aids.

14] NN/MD team will enforce the importance of compliance of medication e.g. self medication and carer’s ability to supervise medication.

14] To demonstrate an understanding of the importance of compliance of medication.

15] NN/MD team will provide information regarding post discharge recommendations to carer

15] To demonstrate an understanding of post discharge recommendations.