Psychosocial wellbeing following stroke -- transition from

hospital to long-term care

Marit Kirkevold, RN, EdD, Professor,

University of Oslo, Institute of Health and Society, Department of Nursing Science

CHARM - Research Centre for Habilitation and Rehabilitation Models & Services

Starting points: We know that…..

• Medical advances in neurology and cardiology have had

significant impact on life and functioning of stroke patients

• Psychosocial difficulties are common in stroke (depression,

anxiety, fatigue, cognitive problems, social isolation and work-

and leisure-related difficulties)

• Physical and ADL issues receive most attention during

rehabilitation and most RCTs focus on these issues

• Patients and family often experience insufficient support in

terms of dealing with psychosocial problems

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Starting points: We know that…..

• A great number of psychosocial interventions have been developed and

tested (medications & non-pharmacological interventions)

• There are few effective interventions available

• Nursing-led interventions carried out in primary care settings are few

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What we don’t know ……..

• What are the effective components of the different the

psycho-social interventions?

• For whom do they work? And why? And when?

• How are they related to the patients’ and their families’

experiences and preferences?

• How do psychosocial needs change over time? And what are

the implications for psychosocial rehabilitation?

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Maria’s “journey of recovery” the first 2 years

following a stroke

5The illustration is based on the analysis of data and was created by the

authors. Maria affirmed the illustration.

The Aphasic Storyteller:

Coconstructing Stories

to Promote Psychosocial

Well-Being After Stroke

(Bronken et al 2012)

«Your big trial of strength»

• Eight individual meetings

over first 6 months

• Trained

nurse/occupational

therapist

• Patient and/or family

(patient’s decision)

• Individualized

intervention based on a

common framework6

Die große Kraftprobe aus Trondheim nach Oslo ist weltweit bekannt und

gilt als einer der renommiertesten Jedermannrennen auf dem Rennradkalender.

Das Event bietet Distanzen von 62 bis 540 Kilometern an, und kann dadurch alle

Radfahrer herausfordern.

Stroke unit & rehabilitation

context

Life before

stroke

Stroke

Trajectory

onset Continued rehabilitation Semi-stable phase

Bodily recovery and functional improvement

Recreating and restructuring daily life

Biographical adjustment & transformation

Going on

with life

Ultimate goal:

‘Live a life

worth living’

A gradually widening context for recovery and adjustment work

Initial

rehabilitation

Recovery and adjustment following a stroke

Integrity

promoting

care

(Kirkevold 2010)7

• Psychosocial needs are related to:

– Cognitive aspects of illness

– Emotional aspects

– Social aspects

– Existential aspects

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Psychosocial needs/problems following a stroke

Suffering from a stroke may lead to:

• Lack of understanding

• Stress, chaos and loss of control

• Depression and anxiety

• Social isolation and loneliness

• Difficulties managing the illness & its consequences

• Fatigue

• Inadequate coping

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Psychosocial needs/problems following a stroke

• Suffering from a stroke may lead to an existential

crisis:

– «losing oneself»

– «losing one’s life»

– «losing one’s purpose in life»

– «loosing one’s place in society»

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A graphical illustration that Maria used to communicate her experiences of a changed self-image and her reconstruction of self. Reprinted

from “Bygge opp et nytt jeg. [Build up a new self],” in Ja, visst ble livet annerledes. Erfaringer og tanker om å leve med ervervet hjerneskade

[Yes, Life Became Different. Experiences and Thoughts About Living With Acquired Brain Injury], edited by K. Sæther and illustrated by E. Ribe,

1999, p. 37. Copyright 1999 by KReSS. Reprinted with permission.

“Building a new self”

Rehabilitation

• A personal adaptation and coping process

• A set of measures to achieve and maintain optimal functioning in interaction with their

environments.

• Originates in functional problems experienced by the users

• Must be viewed in a bio-psycho-social context.

• Enabling the individual to participate and resume former valued daily activities is an essential

part of rehabilitation

(WHO 2011, Norwegian whitepaper on rehabilitation)12

The Therapeutic Role of Nursing in Stroke Rehabilitation

Nursing function Effect on patient (the ”why”)

Conserving function Maintain bodily integrity, avoid preventable

complications

Consoling function Consolation, reduced suffering

Interpretive function Increase understanding of what has happened

and the ramifications of the condition

Integrative function Facilitate use new techniques and coping

abilities in daily life & participation in society

(Kirkevold 1993, 2010, Dreyer et al 2016, Loft et al 2019)13

Nursing interventions to promote

psychosocial rehabilitation

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Interventions focusing on psychosocial needs in

stroke patients and/or their families

• Information/patient education

• Motivational interviewing

• Life review

• Management/coping support

• Social support

(Hafsteinsdottir et al 2011, de Man-van Ginkel et al 2010, Smith et al

2008)15

An example of a psychosocial intervention for

nurses working in primary care

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Die große Kraftprobe

• Eight individual meetings over first 6

months

• Trained nurse/occupational therapist

• Patient and/or family (patient’s

decision)

• Individualized intervention based on

a common framework of stroke-

related topics and use of worksheets

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The intervention:

• “Promoting psychosocial well-

being following stroke”

(Kirkevold et al 2018)

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Study design: RCT and Process Evaluation*

• The effect of the intervention was testes in a Randomized Controlled Trial (RCT) (based on a

MRC Complex interventions design)

• The process evaluation has an explanatory sequential two phase mixed methods design (Creswell & Creswell 2018)

(N=156)

(N=166)

Preliminary results

• The RCT found significant improvement in psychosocial well-being in

both intervention and control groups, but no significant differences

between groups at 6 and 12 months (submitted)

• The qualitative analysis of stroke survivors in intervention and control

groups (19 interviews) indicated that most stroke survivors found the

intervention helpful and valuable (Kitzmüller et al 2019)

• The participants in the control group (15 interviews) experienced being

followed up as they received home visits by friendly data collectors

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Summary

• Psychosocial needs are well documented, but inadequately addressed in stroke

rehabilitation

• Many psychosocial interventions have been developed, but few are documented to be

effective

• We need to develop interventions based on solid empirical and theoretical knowledge of

patient & family experiences and needs over time

• Preliminary results from our intervention study raise clinical and methodological questions

(Bragstad et al 2019)

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