“I’m a half widow,” says Mary, whose 69-year-old husband suffered a hypoxic brain injury two years ago. “I no longer work and that’s not a great feeling because you start to disappear.”

Mary is part of a new study which has given a voice to families of people with brain injuries.
Specifically it investigates an element of brain injury care rarely considered by researchers; the impact on families of having professionals in their home.

Like Mary, Anne is also struggling to adjust to the changes caused by a brain injury, in this case to her son. She says: “You don’t really feel you can argue…You’ve always got somebody there that can hear if I wanna have a wobbly.”

The research paper, How many people in my house?Family experiences of intensive domiciliary community care following brain injury, is authored by Dr Sonja Soeterik, Erika Turner and Angi Perez-Sanchez.

It was supported by UK firms SweetTree Home Care Services and Neurolink Psychology and seeks to expose previously unseen challenges faced by families living alongside rehab professionals.

It comes in an era in which ongoing funding pressures continue to drive shorter periods of inpatient neuro-rehab in favour of intensive community care at home.

While some patients have a private care regime funded via damages, others have been injured with no case to pursue and return home reliant on statutory provision. Either way, welcoming strangers into the home can be hugely challenging.

“There is very little literature about family experiences,” says Erika Turner, co-author of the study and director of SweetTree’s brain injury and neurological conditions service.

“There are findings on loss, grief, adjustment, caregiver burnout and so on, but not on this area.
 When you work in inpatient rehab, the goal of the client is to get home to be with their families.

“Huge efforts are made to enable this to be met. But the idea of coming home with a support team living in your space is a difficult thing to get your head around.
 Going back home is not going back to normal, it’s a new normal.”

This challenge was summed up by a respondent in the study: “Being in your home with other people, strangers, living with you is a massive thing to overcome.”

The study was carried out through a psychological research method known as Interpretive Phenomenological Analysis (IPA).

This approach aims to understand a participant’s lived experiences and how they attempt to make sense of them – rather than one prescribed by pre-existing theoretical preconceptions.

Small numbers of similar 
or homogenous participants are used to establish depth, not generalised trends.

In this study, a handful of female carers of brain injured sons and husbands offered detailed insight into their daily lives.

Researchers initially sought to detail the underlying family tensions caused by injury even before the issue of strangers in the home had arisen.

A common theme was unwelcome role and behavioural changes within relationships.
“It’s always my fault that he can’t do something,” one person explained.

Loss of previously intended plans and socialising opportunities also clouded relationships: “We don’t go out as much as we used to,” was a typical concern.

Feeling overwhelmed by the burden created by the injury also stood out. “You’re married and you do it together, but now it seems to 
be all on me,” a participant said.

“I’m now in charge of everything, which is not me,” said another. Uncertainty also loomed large, for example: “I don’t think it will get any easier… when I think about it, it’s been nearly two years and it’s just the same really.”

Add to this emotionally charged period of adjustment, a new challenge: dealing with the strangers that have taken up residence in your home.

Members of professional teams often know vast amounts of personal information about the client, but little about the patient’s loved ones.

They may also have very different beliefs and cultural values to family members. Typically, much of their work could take place at the epicentre of a busy home.

Turner says: “In an ideal world the family might live upstairs and the person with the brain injury downstairs with their carer. Everyone has their own bathroom and the carer never needs to go upstairs so there is a very clear physical line to cross into the 
family spaces.

“Sometimes this is not possible and the person with the brain injury is in a bed in the middle of the living room. The support team and everyone else is there getting on each other’s nerves. So how do you make it work?”

The study set out to analyse how families 
can balance their sense of intrusion and 
loss of privacy, with integrating vital support into family life.

Turner says: “We chose participants who had significant care needs requiring a minimum of 12 hours per day of support for activities of daily living, personal care and community access.

“Essentially the families had someone living in their home they would never have necessarily chosen 
to be friends with. Do they consider them friends? Staff? Family members? What do they include them in and exclude them from? How do they draw the line? We wanted to understand what we as professionals could do to help these families adjust.”

Part of the inspiration for the study was the challenges Turner’s fellow researcher Dr Sonja Soeterik experienced when her home was taken over by strangers as building work was completed recently.

The consultant clinical psychologist, who founded Neurolink Psychology and sits 
on SweetTree’s advisory board, says: “The builders had a key to my house and were coming in in the mornings to start work, when I might have been in and out of the shower. 
I couldn’t decide whether I made them cups of coffee and they didn’t know whether they needed to ask if they could use the loo.”

For a family hit by brain injury which has caused long term care needs, such daily awkwardness could play out indefinitely for many years if not addressed.

All participants in the study described the challenge of having support in the home.

“Sometimes your house can feel taken over,” said one.

The difficulty of keeping usually-private discussions, on topics like money, out
of earshot of support workers proved particularly stressful, as highlighted by a respondent: “I will say ‘you can’t do this, this is private’ and my husband just ignores it totally and will blurt out the figure and [when she kicks him under the table to warn him not to speak in front of the support worker], he’ll say ‘don’t kick me’.”

Further embarrassment was documented 
in situations where the brain injured person breaks the realms of the socially acceptable
– perhaps due to behavioural changes caused by the injury.

“What’s affected me most is that he can be terribly, terribly rude to people he doesn’t know,” an interviewee said.

According to the research, shame and embarrassment are felt by families due to their inability to project the image of themselves to the wider world they wish to when support workers are present.

Professionals overhearing “negative family communication” or racial comments from 
the person with the injury, were among the embarrassing situations discussed in 
the study.

The turning point for the women interviewed seems to have been what the report describes as “surrendering” in their fight for privacy from support workers.

Turner explains: “It takes time to develop trust in the support worker. It is a fight the families had to allow themselves to do.

“Once they actually surrendered, they found it quite enabling, allowing them to do things they hadn’t expected. People talked about the person with the brain injury being more communicative and interested in them.

“We found that having dinner with the support worker creates conversations for them and social interactions which none of the family had previously managed. By having a support worker, things that might otherwise be very difficult to do, like getting the husband out of the house in the evening and going to the movies, are possible.

“The support workers open the world up for them both, not just 
the person with the brain injury. Having that extra pair of hands enables them to actually be more relaxed and do more things.

“It seems that there was a tipping point so that once they gave in, they were able to make their social world richer by having support workers helping them.

“We think of the support workers being there to make the world better for the person with the brain injury, but actually they are also contributing to the family in terms of their own wider community integration and ability to keep some of those things that they as a couple had valued.”

Despite longing for privacy, all respondents described their resignation that it was no longer possible, for example: “I don’t like the fact that I have carers. I have to admit that. But I also realise that I just would not be able to manage X on my own.”

Another said: “I would think that I would know best for X but I have to be willing to allow the professional to do their job without always interfering.”

In some cases, although trust in the professionals had grown, power struggles remained over how best to treat the client.

“Professional people come along and say ‘this is the right way and this is the wrong way’. In the end, you think ‘wait a minute. I could do a bit better than that,” said an interviewee.

Generally, however, the challenges and problems of welcoming professionals into the home were matched in the study by ultimately positive experiences; many close bonds were forged between families and professionals, as shown in the following responses:

“As far as I’m concerned, they’re part of the family and they’ve [even] been to weddings with us. There has to be a certain distance, but I
feel they’re like a daughter…they give and they care, I also care about them. It’s give and take.”

“We’ve got a local music club that we do together and the carer comes. Luckily [support worker X] is coming…she loves music so that’ll be fine.”

Of course, not all support worker/family member relationships are as close, with some responses suggesting that professionals 
are strictly considered as just that.

One respondent described going on holiday while the brain injured person stayed at home with their carer. They locked doors to all rooms in the house not needed by the support worker or injured person.

Given the difficulty of the trust-building process, changes to support team personnel unsurprisingly caused problems. One participant explained the importance of having “a team where I can relax”, adding: “If there are going to be continual changes, that’s the worst thing for me.”

Soeterik hopes this and other concerns raised in the study will help to improve the way family members are supported on the 
rehab journey.

She says: “The whole system 
is set up with the idea that support workers are there to support the person with the brain injury.

“Yes, they have to consult with and support families but I don’t think families are thought of in the same way as they are in the paediatric model of rehab, for example.

“Our research points to the idea that we need to look more at the whole picture, particularly in terms of home-based packages.

“So, it’s not just about the person’s goals which are important to their rehab, like being able to walk up the stairs, it’s about how everyone’s life is being affected in the house.”

The research findings will be shared at a number of well-attended neuro-rehab events this year. They have also been used to compile a list of tips for families and support workers, which will also be widely distributed.

In the longer term, more research into an area largely neglected by studies on the fallout of brain injuries could follow.

The research paper concludes that: “Services and professionals should be aware of the impact of support on the wider family system and consider how best to integrate the support.”

Soeterik says: “There is definitely much wider scope for this in terms of other professionals as well as support workers, including solicitors, experts involved in the legal process, case managers and clinicians. We can do a lot more and I guess this is just the start.”

Legal view: Easing the transition to home care by Irwin Mitchell’s Hilary Wetherell

Life is rarely the same again after a brain injury, whether acquired or traumatic.

Coming home from hospital or a rehab unit is a key time for everyone but raises yet another round of brand new challenges.

So what else can legal and clinical professionals do to provide assistance, support and guidance through the process of adjusting to complex home care provision?

An awareness of statutory rights and obligations is key; anyone living in the community with continuing healthcare needs must be assessed to establish how those needs will be met.

Discharge planners/co-ordinators are typically very good sources of advice and assistance on these issues and there is a wealth of information on NHS England’s website.

For those who do not agree with the assessment that has been made, advice from a specialist solicitor or local advocacy service should be sought as quickly as possible so that any challenge can be submitted.

For those clients who do not have family support or where there is a significant dispute, early consideration should be given to sourcing an IMCA (Independent Mental Capacity Advocate) or other non-statutory advocacy service.

Education and training is also crucial – for the family and, critically, those paid to provide care and support.

Brain injury charities and online resources can provide invaluable information and support to family members working through this adjustment – which may very easily take years and never be truly complete.

Turnover of care and/or support staff can be high because the work can be physically hard as well as emotionally draining; families should be warned to expect this to avoid the feeling that have failed in some way.

The physical environment is often a key 
issue and can be very di cult to change; if finances permit, adjustments to accommodation or moving to adapted accommodation are
both possible.

The dynamics described in this research are readily evident whether or not the individual has access to private care and therapy because essentially the research describes human dynamics under extreme pressure.

Being able to spot the issues before they become insurmountable and have open discussions whilst maintaining appropriate privacy and dignity are additional key skills which any care team leader, social worker or case manager must prioritise.

Integral to this is careful and thorough supervision of the team. Maintaining exemplary records of care and decision making is also fundamental.

Hilary Wetherell is partner in Irwin Mitchell’s serious injury team in Birmingham. 

Building a happy home

The ingredients of successful home-based support, according those questioned in the ‘family experiences’ study:

Reciprocal relationships
Respondents described a dynamic and reciprocal relationship with support workers in which they too were deeply invested, not just the person with the brain injury.

Consistency and familiarity
These factors were both highlighted as very important to participants – for the wellbeing of the client and their family.

Seeing the full picture
Understanding the family and not just the person with the injury was considered necessary. Support workers should know “the little things” about the family, said one respondent.

A good fit with everyone
While the nature of the support worker should be a good fit with that of the injured person, family members also stated their relationship with the support worker was important.

Offering security
Support was seen as providing a sense of security for families –particularly as a “sounding board” for concerns about how best to support the person with the brain injury. As one interviewee explained: “It’s always worse at night and you think ‘well the carers are coming soon’ and I’ll wait and wait and wait.”