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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
2
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
3
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?
4
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
8
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
9
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»
10
11
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
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
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
17
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
22
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)
23
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