Supporting Psychosocial Well-being After Stroke
Psychosocial Working Group
National Stroke Network
Chairs: Dr Felicity Bright and Dr John Davison
November 2022
Across Aotearoa, people experiencing stroke and their whānau have told us about the emotional, spiritual and social challenges that they face in dealing with their life changing events
They also describe the limited resources and assistance available to help them cope with this change. Developing guidance for those of us working with consumers, supporting them though their psychosocial challenges, is a high priority for the National Stroke Network and an important component of the New Zealand Stroke Rehabilitation Strategy.
I am therefore delighted to be able to introduce this kete of knowledge designed to improve outcomes for our whānau living with the effects of stroke. This resource provides clear guidance for services. Through developing pathways for care, ensuring appropriate screening, and assessment when indicated, and timely interventions, we can improve the psychosocial health of people experiencing the effects of stroke. The emotional and social needs of our consumers is a core component of the work of which we all should be aware. This toolkit is evidence based, yet pragmatic, easily understandable and sensitive to the needs of whānau. It is an important step along the pathway and as such should be seen as a living document for all users. Future changes will respond to feedback and ideas that come from its use.
The toolkit is the culmination of a great deal of work from a number of people. The journey to develop this has been disrupted over the last two years. That we have come so far reflects the passion of those involved. I wish to thank everyone who has contributed, but in particular the leadership and expertise of Felicity Bright and John Davison. Your skills, passion and sensitive approach is inspiring.
I also wish to acknowledge the whānau who have shared their experiences. Your willingness to share the stories of your journeys with such openness and trust is humbling. It is now our job to ensure your trust in us is well placed.
Mā tō rourou, mā tōku rourou, ka ora te iwi
With your contribution and my contribution, the people will thrive
Dr Alan Davis
Clinical Lead for Stroke, Te Whatu Ora
Chair, National Stroke Network
Felicity Bright and John Davison present an introduction to the document highlighting different approaches to psychosocial screening, practical action plans when clinicians have concerns, and introduces the Stepped Care Model, which is recommended as an approach to supporting well-being as part of routine stroke service provision.
Watch the webinar here
“My life has completely changed. You might look at me and say I’m okay. But I’m really not okay. I know in my head that I’m not okay, even though I’m physically okay. My life has turned upside down. I don’t know how to explain it. I don’t feel like I’m me. It’s hard feeling like I’ve lost me. The strong, capable, social me.”
— 45-year-old woman living with the impacts of stroke
The purpose of this document is to support health services to improve psychosocial care within stroke care provision.
The document provides a structured guide for health services developing their psychosocial care pathways, and it provides a resource for clinicians developing their own competencies in supporting psychosocial wellbeing post-stroke.
Psychosocial well-being - the psychological, social and emotional impacts of stroke - has a significant impact on life after stroke. Many people experience difficulties adjusting to their stroke and changes in roles and social relationships. People can experience anxiety, depression, difficulties with regulating emotions and sometimes changes in personality. Poor psychosocial health can impact on functional outcomes, quality of life, healthcare utilisation, and even mortality. Identifying psychosocial issues early and providing information and supports in a timely manner can have many positive outcomes for the person with stroke and whānau.
Everyone in the team has a role in supporting psychosocial well-being. This includes whānau as a key part of the person’s team. They bring their own expertise and provide support beyond services. Team members need support to build their confidence and capability in supporting well-being. The well-being of the care team, which includes whanau and healthcare professionals, is also important if they are to be able to support others.
To provide comprehensive care, it is recommended that every stroke service develops a psychosocial care pathway. Whanaunaungatanga is at the heart of psychosocial care, and within all stages of the pathway, there should be an emphasis on building and strengthening meaningful connections between the person with stroke, whānau, and clinicians. Pathways should be developed with Māori advisors to ensure care is culturally safe and responsive, and that pathways can achieve equity. Whanau should have the opportunity to be involved at all stages of care.
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Processes to regularly review well-being throughout the person’s episode of care.
Integrating of specific psychosocial-oriented questions into disciplinary assessments
Validated psychosocial screening at least once during an episode of care, and diagnostic and risk assessments if indicated
A ‘stepped care’ approach, with proactive supportive care provided to all people with stroke, and more specialised interventions provided as appropriate.
All services should have access to psychological support, and pathways should exist to ensure timely referral and review by specialist providers.
Action plans for supporting well-being; support may be provided by whānau, stroke/rehabilitation clinicians, and specialist mental health clinicians.
Psychosocial needs and care should be addressed within discharge planning and transitions of care, with effective documentation and communication.
This resource is the first in a series of outputs to enhance the effectiveness and consistency of psychosocial supports within stroke services across Aotearoa. This will be supplemented by a series of materials such as: webinars and in- services to build knowledge and skills in psychosocial care; training to provide psychosocial supports at levels 1 and 2 of the Stepped Care model; and a community of practice to share knowledge and practice across Aotearoa. Further refinement is expected as we build our knowledge of how best to provide culturally responsive psychosocial support in Aotearoa.
On behalf of the Psychosocial Working Group
Felicity Bright, PhD and John Davison, PhD
Core Principles of Supporting Psychosocial Well-being
Psychosocial well-being is everyone’s business.
Every member of the team has a role in supporting well-being after stroke. All team members need the training, skills, support, and supervision in supporting well-being.
Whanaungatanga is the foundation for psychosocial care
Psychosocial care is best provided in the context of a mutual relationship where people feel welcome, known, and have a sense of connection with the person they are working with.
Services should offer proactive rather than reactive psychosocial support
Services should take a preventative and proactive approach to supporting well-being. This includes creating a care environment which is welcoming and engaging for clients and whānau and responsive to different perspectives of health and well-being. Recognising and supporting the well-being of everyone – people with stroke, whānau and staff – is important in creating this nurturing environment.
Involve whānau at the beginning
Whānau are a core resource in supporting well-being. Taking a strengths-based approach, exploring, supporting and building on the strengths and knowledge of whānau, is important.
Psychosocial care should consider how whānau well-being has been impacted by the stroke, and what supports they need to maintain their own well-being. Whānau need to know what services are available to them.
Psychosocial care must be culturally safe and responsive
Screening practices, psychosocial supports and broader service provision must be culturally safe and culturally responsive.
Staff need a range of tools in their kete to ensure they explore and acknowledge what may be important for the person with stroke and for whānau, and that they can create an environment that is welcoming and supports connection and well-being.
As services are developing their psychosocial care pathways, they should ensure Māori are involved in co-designing, delivery and monitoring of these pathways.
Every service needs a psychosocial screening pathway and access to specialist psychological supports
People should know how and when to screen, when to refer for specialist support, and how to ensure screening is adapted for those with cognitive and/or communication needs. People’s psychosocial needs must be clearly communicated throughout transitions of care.
All team members should be able to provide core psychosocial support, but services should have access to psychology for people who require more specialist support.
Supporting psychosocial well-being in stroke services
Background and introduction
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Supporting well-being requires multiple lines of work: prevention, screening and early assessment and intervention for psychosocial issues. This resource reflects the Action Plan’s specification of developing a model of stepped care for use in Aotearoa and is designed to support services to develop and implement a process for ensuring “all patients are screened for psychosocial needs using a validated screening tool and/or psychosocial assessment”[1]. Additional resources to build peoples’ confidence and capability in supporting well-being will be developed over time.
This resource is not exhaustive and is a living resource which will continue to be updated over time. We welcome services sharing their resources through the National Stroke Network.
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This resource reflects the work of the Psychosocial working group of the National Stroke Network. The group is comprised of Māori and tauiwi members. They include providers from across from across the continuum of care, academics, community stroke advisors and people with lived experience of stroke. Full details of the group are in the Acknowledgement section . This group developed this document based on multiple reference points: priority setting within the group, a national survey of current practice, a review of the literature and international guidelines, interviews with stroke service leaders throughout Aotearoa, and consultation with subject matter experts.
The Action Plan for Stroke Rehabilitation
The Action Plan for Stroke Rehabilitation has been developed to improve outcomes for people after stroke . Focus Area 2.1 of the Action Plan informs that “all patients with suspected psychosocial needs are screened and where needs are identified, are offered appropriate timely interventions”. This is a key performance indicator that all services are expected to meet. Given all people with stroke may experience some psychosocial impacts, screening and psychosocial support should be offered to all people with stroke. This resource has been developed to support services in meeting these expectations and in reviewing and developing their psychosocial care pathways.
The need to attend to people’s psychosocial well-being
Most, if not all people with stroke experience some psychosocial impacts of stroke as they adjust to this significant change in life circumstances. This can include grief and loss, disruption to one’s identity, hopelessness and loss of control, changes in roles and social relationships, and for some, anxiety and depression [2].
Following stroke, many people experience poor psychosocial health. Clinical mood disorders such as anxiety and depression are common. Approximately25% of people experience anxiety after stroke; this rate nearly doubles when one has aphasia [5]. Around 31% of people experience depression after stroke, whilst the incidence is ~65% in those with aphasia [6]. Poor psychosocial function is associated with poorer functional outcomes, reduced quality of life, higher mortality and greater healthcare utilisation [7, 8].
Psychosocial well-being is multi-faceted and a key contributor to quality of life. Well-being supports engagement in rehabilitation and activities that are meaningful to the person following a stroke. It comes when people have strong self-identity, good social relationships with whānau, friends and other stroke survivors, hope for the future, a sense of purpose and meaning, and a generally positive mood [3, 4]. Te Ao Māori models of hauora describe the importance of holistic understandings of health and well-being, seeing physical, psychological and spiritual health as being entwined [3, 4].
To support people in their recovery from stroke, it is critical that healthcare professionals explicitly attend to people’s psychosocial needs. Identifying psychosocial issues and providing supports in a timely manner can have many positive outcomes for stroke survivors and their whānau.
We present the resource in five sections:
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Creating an environment that supports well-being
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Development of psychosocial pathways in stroke services
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Psychosocial screening
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Action plans to support well-being
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Whānau well-being