Whānau well-being
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Core Principles for Supporting Whānau Well-Being
Identify who significant whānau are
Don’t make assumptions about who the key whānau are for the person with stroke. Ask. The key people to connect with may or may not be physically present, but will need to be included in discussions about people’s on-going care and support needs.
Recognise that the well-being of whānau is impacted by the person’s stroke
Stroke impacts on whānau through changes in roles, relationships, finances, and through other changes in everyday life.
The well-being of whānau needs to be attended to within the episode of care.
As a minimum, whānau should be asked about how the stroke has impacted on them, how they are coping, and what supports they need.
Whānau need to be provided with information and support
The impacts of the stroke neeed to be acknowledged and normalised.
Help connect whānau with the support they need. This may be through the social worker, their own GP, or through other organisations.
Provide written and verbal information, and help people connect with useful information sources.
Considering whānau well-being
Recognising psychosocial impacts on whānau
Stroke has a ripple effect that extends beyond the person who has had the stroke. Whilst the focus of stroke services is primarily on the person with stroke, their well-being is entwined with the well-being of their whānau. Whānau – partners, children, mokopuna and others in the wider whānau network – can experience significant life changes as a result of the stroke. Changes in relationship are common, such as a partner taking the role of carer, and changes in how people relate , such as changes in communication, cognition, behaviour, and sexuality. Pre-existing relationship challenges may be exacerbated post-stroke. Carers, who are most commonly whānau members, are at increased risk of depression and anxiety; this can persist for a number of years post-stroke. Given all of these things, considering the well-being of whānau is important.
At the same time, it is important to recognise that every whānau is different. Don’t make assumptions. Explore who are the important whānau members for the person with stroke.
Considering whānau well-being
The psychosocial needs of families and carers should be considered in rehabilitation. At a minimum, whānau and carers should be supported to identify and discuss the impacts of stroke and their post-stroke needs, including the supports they need as they care for their whānau member. Screening may also consider their level of coping and risk for depression. This screening should ideally take place around each transition point and be repeated throughout the episode of care.
A designated staff member who has a relationship with whānau members should, through conversation, explore the impacts of stroke on them and their whānau, how they are coping with the stroke and its impacts, mood, and support needs. It is often important to have these conversations in a private space; if they don’t need to worry about being overheard by others (including the stroke survivor), this may mean whānau feel freer to talk about their own experiences. This conversation should be documented and resulting actions detailed and followed up.
Screening should also consider the ripple effects of stroke – how it might impact on people within the wider whānau unit. This can include considering how the stroke impacts on the person’s role within their whānau and the inter- generational impact of the stroke on others (e.g. how mokopuna are impacted).
”Stroke has a ripple effect that extends beyond the person who has had the stroke.”
Questions might include:
How is the stroke currently impacting on you?
How is the stroke impacting on your wider whānau?
Have you got other stresses in your life at the moment?
Are you noticing any changes in behaviour or personality? How are you coping with these?
How do you look after yourself during this challenging time?
What might help you and your whānau as you adjust to living with the
effects of stroke?
What is most important to you right now?
What do you do if carer well-being issues are identified?
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Acknowledge the impact of the stroke on whānau.
Recognise the important role they play and reassure them that their reaction is common. Normalise the psychosocial impacts of stroke for both the stroke survivor and their whānau.
Refer to social work or psychology for support.
Provide information about people’s practical concerns. Resources may be found on the Stroke Foundation website, through international Stroke organisations, or through blogs or books by whānau members who have navigated this journey before.
Provide information about what services are available during and after the episode of care and give verbal and written information about how they can access them.
Connect whānau members with support services such as the Stroke Foundation of New Zealand.
Groups for whānau members can be a useful resource to help people feel connected to others who are having similar experiences. These groups may be part of your service or they may be provided by others (e.g. Stroke Foundation).
Support the person to connect with their GP.
Provide a notebook and pen and encourage whānau to write all current challenges, identify what they have control of currently and can change, what is their priority, and who can they draw on for support.
Formal screening of carer well-being
More structured tools are available for screening for carer burden are available. However, there are pros and cons to this. Before engaging in formal screening, consider what you will do with the information. Are there supports available? Who might you refer on to? Often conversation and demonstrating a genuine interest in how people are doing is the best approach.
However, if the service wishes to screen for carer well-being, some screening tools are:
Bakas Caregiving Outcomes Scale
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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