h) Family members and friends  Next g)

i) Introduction

Family members have also to be able to deal with:

  • the changes in the family member because of the ABI
  • the responses to the family member in coming to terms with the ABI
  • their own coming to terms with all of this, and
  • the impact of the change on the family.

Family members have a key role in helping the person with the ABI recover.

Staff working with people with ABI need to work with family members.

There are principlaes that underpin working well with families.

Parents of a person with an ABI said:

And the impact on you?

Father: Yes it changed our lives. I was just retiring at the time this happened actually and of course I had big things made out and we were going for a trip and all the rest of it and that all fell down. Yeah we spent all our time with Ian. It changed our lives there.

Mother: We just sort of went in a different direction. You know, we didn't have the things that we expected that would happen. Anyway, you know, we learned – well I learned a lot. Going out to all the meetings that there were. Any time there was a meeting I took myself of.

Mother: In the beginning I'd ask doctors lots of questions and half the time they wouldn't know. And every doctor's rooms – I mean I spent half my life in doctors' rooms, in fact, I made a quilt by hand – it took me five years that's how long, you know, sewing all these bits together, sitting down in waiting rooms and that's quite an achievement. It is on the bed now. But 22 years ago, there was no information. Every doctor's room I went into I picked up pamphlets. Anything to do with the brain I'd pick it up and take it home with me so I would perhaps learn a bit more about it.

But it took such a long time. And the recovery is slow and everybody doesn't recover at the same amount of time. And brain injury is so different. When you talk disabilities, people imagine somebody's just had an accident, you know, they are disabled. But brain injury is so different and the people are so different, their problems are different that even some of the professionals don't always get it right.

Father: The biggest worry actually is

Mother: After us.

Father: Life after Mum and Dad.

Mother: Yeah.

Father: That's the biggest worry. That's our biggest concern.

Mother: It has been for quite a few years but the solutions are not there really.
What would you be hoping for? What would you -

Father: We are hoping for somebody who is able to look after Ian's interests one hundred percent.

Mother: Yes, but there's no more Mums and Dads.

Father: That's the trouble. That's what we are looking for.

Mother: A pipe dream.

A caseworker talking about friends:

Unfortunately one of the things that we find when people do sustain an acquired brain injury is that a lot of friendships go by the by because people just can't understand the changed nature of the person that they used to know.

A lot of the time there can be no physical remnants of the injury. The impacts will be obviously brain related and it is going to be about speaking to a brand new person because the things that the friends could rely on before for that person, the shared experiences, some of that is missed.

So with friends we would explain to them that it is essentially the same person that they need to know that they need some new considerations when they meet up with them. It is about again explaining the nature of the injury to the friends, explaining that their friendship is still very important, although it has changed now.



ii) Family members experiences

Family members have also to be able to deal with:

  • the changes in the family member because of the ABI
  • the responses to the family member in coming to terms with the ABI
  • their own coming to terms with all of this, and
  • the impact of the change on the family.

Family members have a key role in helping the person with the ABI recover.

Some of the key challenges for family members are:

  • understanding the injury and its effects
  • understanding the hospital and services network
  • coping with the person with the ABI and the ways they have changed
  • adjusting to family role and relationship changes
  • managing and dealing with the practical problems that need to be solved day to day
  • supporting family members and friends in dealing with what's happened and what's happening
  • supporting and planning for the future.

The emotional process for family members is not linear with a series of pre-known phases. It is more like:

  • a roller coaster
  • a struggle
  • working on the unexpected
  • moving forwards and having setbacks.

Some of the elements in the mix of what's happening are:

  • shock
  • numbness
  • guilt
  • denial
  • anxiety
  • anger
  • frustration
  • emotional relief
  • depression
  • grief and
  • acceptance.

Some strategies that can help:

  • sharing the experience with others who have had first hand experience of this
  • work closely with the members of the team
  • acknowledge there will be constant change
  • develop strategies for dealing with the day to day
  • develop strategies for your own well being
  • Recognizing the different issues for different family members - mother, family, spouse, brother, sister and children.

Rules of thumb

1. Understand the impact of the ABI on the person with the ABI.

2. Understand the impact on the family.

3. Be aware of the families need to develop strategies for working on the changes that have happened

4. Be aware of the families need to develop strategies to sustain themselves

5. Be aware of the families need to develop services and networks to support goals.



iii) Working with families: Principles

     1. Partnering with families

    • Working together with families in partnership - collaboration
       1. Partnering with families

    Principle: Partnering with Families

    Partnering with families recognises the vital role they play in providing support to the person with traumatic injury.

    With the agreement of the person with the injury family members can provide crucial information regarding assessment, goal setting, therapy, evaluation and discharge planning.

    Family members knowledge of their relative’s situation and expertise in knowing how to provide specific support is invaluable to the multidisciplinary team. Yet, the expertise of family members is often not recognised, and many decisions are made without family member input.

    By partnering and consulting with family members, staff encourage active participation and assist family members to be better prepared to manage the challenges they may face in the future.

    It is important to recognise that the family will be facing and dealing with the long term consequences of the injury.

    To work together as a team with family members, communication channels must be clear and open. Both staff members and family members need to be able to exchange important information with one another. Families need to be both included and informed.

   2.  Being “whole of family” minded

    • Viewing the family as a whole system. Understanding that any change for one family member will affect every other family member in some way
    •    2.  Being “whole of family” minded

      Principle: Being “whole of family” minded 

      A traumatic injury doesn’t just happen to an individual, but to a family system.

      Being ‘whole of family minded’ is another way of saying that we treat traumatic injury as happening to the whole family system. 

      Everyone within this system is affected in some way by the injury. Different family members will have different needs in their ability to understand what has happened, depending on their age and how close they were to their injured relative. Traumatic injury can affect the roles family members carry out, the interactions that they have with each other, and the expectations and beliefs they hold. Each member of the family system may cope differently with the distress and adjust/adapt to the changes at a different pace and in different ways.

    3. Understanding family reactions

    • Being able to put oneself in the shoes of the family members and make sense off their reactions, such as confusion and fear, distress and anger
 3. Understanding family reactions

Principle: Understanding family reactions

Families can experience many different types of reactions when their relative has sustained an injury, and when they openly display these reactions it can be difficult for staff.

Three common types of reactions are:

(i) Confused and fearful:

Earlier we viewed the DVD of Angela, and considered some of the key adjustment challenges she faced. Like many family members she was confused and fearful in the early stages of Steven’s time of rehabilitation, and wondered what the future held.

(ii) Distressed and/or crying:

Some family members will go through periods in which they will experience distress – distress may also be expressed through tears.

(iii) Anger:

Understanding some of the fears family members may be experiencing will mean we are less likely to personalise aggressive or angry responses.  

    4. Treating families with respect

    • Recognising different beliefs family members may hold because of culture, religion or social background, and meeting their various needs without judgement
 4. Treating families with respect

iPrinciple: Treating families with respect

As we have mentioned, every family is unique, and may have different responses and needs.

Different cultural backgrounds, languages, beliefs, coping styles and social background, will influence how a family responds to staff, treatment, and the various challenges they face.

These aspects may be very different to our own experience of family and our own expectations about what a ‘good family’ will believe and do.

A starting point in demonstrating respect is being mindful of the labels that we use to describe families. Although there are many positive words and phrases that staff use, we need to be on our guard that we don’t fall into the trap of using negative labels, particularly for families who are challenging because of their differences compared to our ideas and expectations of families.

   5. Empowering families using a strengths-based approach

    • Focusing on the strengths and abilities of family members, rather than their problems and weaknesses
5. Empowering families using a strengths-based approach

Principle: Empowering families

An important way that staff can empower families is by identifying and focusing upon their strengths.

When working with family members of people with traumatic injuries it is often easy to identify those family members who are struggling, or “not coping”.

The strengths perspective is a framework which moves away from focusing on problems and instead focuses on strengths and possibilities within individuals and families.  Although this might seem like an easy task, it does take some practice!

It requires staff to take on an attitude which considers possibilities and opportunities, rather than barriers and challenges.

Family resources, talents, knowledge, and motivation are brought to the fore, and families are viewed through a “resilience-lens”, rather than a lens which focuses on labels and problems.

This does not mean that pain is not acknowledged or seen as real, but that in the midst of difficulty and challenge, strengths and a family’s capacity are noticed and drawn out.

Some important factors for using a strengths-based approach with families are to:

  • Recognise that all families have strengths, capacities and resources
  • Listen to a family’s story carefully and acknowledge pain and sadness
  • Look for strengths and point them out
  • Ask questions which explore strengths, for eg. 
    • How have you managed to get to this point? 
    • What are your sources of support?
    • What has helped you in challenging times before?
    • What skills and strengths do different members of your family hold?
    •  How have you worked together as a family? 
  • Acknowledge that families are experts on their own situation



iv) Clip 7. Impact, learnings, hopes (6 mins)

Ian's parents talking about the event that caused the ABI, the impact that it had, what they have learned and what they are hoping for. (This video clip is also included in Module 1)


v) Questions

Answer the following question:

You are going to be talking with family members of a person with an acquired brain injury about how they are coping. The family is coming to terms with their situation. The family member got a serious ABI about six months ago.

You are running over in your mind key points that you might want to highlight during the conversation.

What are ten key points you would keep in the back of your mind?
   Check your answers here

1. Having a family member with a brain injury is one of the most serious challenges a family can face.

2. Families cope in many different ways.

3. Learn about acquired brain injury.

4. The person with the ABI will be the same but different.

5. Understanding how they are different is a key part of moving on.

6. The person with the ABI needs to be part of the decision making.

7. Identify specific strategies that help you deal with specific problems (labelling drawers, using memory aids, etc).

8. Creatively find ways around ongoing difficulties and see this as steps towards recovery

9. You are part of a wider team of people.

10. Sharing information will help with the provision of services.

11. Gains are possible but often slow in coming.

12. All members of the family have needs. Understand your family dynamics and your family's needs.

13. Everyone in the family will go through loss, grief and re-discovery.

14. The process of coping with a family member with an ABI constantly changes.

15. Families often have less stress when they actively try to find solutions to problems than when they avoid the problems trying not to think about it or avoiding dealing with it.

16. Looking after yourself is essential. Notice what forms of practical and emotional support your need and how to get them.

17. Having a break is OK.

18. It is OK to ask.

19. It is OK to complain.

20. Don't get swamped by information - look for useful information when it will be relevant to you.