Attendant care in families

Working with families

 Families can be defined as those people who are:

• family related by birth
• the family gained through marriage or agreement
• family of choice and friends (not related biologically or by marriage)

There are many types of family

Families may include nuclear, step, or blended, and same sex arrangements.
Family members may be children, parents, single parents, siblings, aunts, uncles, cousins, grandparents, foster parents, adoptive parents, step parents, and couples without children.
Families may span two, three or even four generations.

• Two parents no children
• Two parents and young children
• One parent and children
• One or two parents and adult child/ren
• Foster parents and foster children
• Adoptive parent and adopted child
• Blended family and step children
• Families including aunts or uncles
• Grandparents, parents and children
• Parents and children and grandparents
• Same sex couple

 People with a ABI or SCI are part of families.

Many people with ABI or SCI are living with their families.
All family members affect each other.

ABI or SCI impacts on the whole family

A family member with an ABI or SCI impacts on the whole family.

Support provided by families

Families provide support to each other including:

• Emotional support
• Practical support
• Networking
• Social and financial support.

Families can provide additional support to the person with the ABI/SCI.
They can also provide support to service providers.

Principles for working with families

Families with a member with an ABI or SCI can have many people working with them. All members of the team, including attendant care service providers and attendant care workers need to work to the following principles. Exactly how these principles are implemented will depend on the role of each person in the team.

1. Partnering with families

Working together with families in partnership – collaboration

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

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

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 judgment

5. Empowering families using a strengths-based approach

Focusing on the strengths and abilities of family members, rather than their problems and weaknesses

Good attendant care looks like

When these principles are applied by Attendant Care Providers and Workers good attendant care looks like:

• The service provider keeps the family informed (with the client’s permission).
• The service provider understands and takes into account how the work with the client is impacting on other family members.
• The service provider works with the family’s strengths.
• The worker understands the emotional journey the family members have been through.
• The worker treats all family members with respect.
• The worker is aware of the impact their presence is having on other family members.

Signs of things not going well

• Communication break downs.
• The worker is not aware of the impact their presence is having on other family members.
• The worker ignores other family members.

 

Families experiences

Here are three families who have been impacted by ABI and SCI.

Angela (1 min 24 sec)

Angela is the mother of Steven. When Steven was 16 years old he was involved in a motor vehicle accident and sustained a traumatic brain injury.

Steven was acutely managed at Westmead Hospital and then spent 6 months in the Westmead Brain Injury Rehabilitation Unit.

Angela and her husband have 4 children. Steven has an older brother and two younger sisters. At the time of the videos Steven was 10 years post-injury, and Angela reflects on her experience of the rehabilitation experience, preparing to come home and being at home.

The video may take a few moments to load.

 

Cheryl (1 min)

Cheryl is the wife of Peter. She was interviewed in August 2009 in Sydney Australia. Cheryl and Peter have two adult children. Their daughter was aged 18 and their son was 23 at the time of Peter’s Spinal Cord Injury.

Peter sustained an incomplete C5 Quadriplegic level injury in November of 2006 as the result of a spinal abscess. Peter’s injury was initially managed in the acute Spinal Injury Unit at Royal North Shore Hospital. After approximately 2 months, Peter was transferred to the Moorong Spinal Unit at the Royal Rehabilitation Centre Sydney for ongoing treatment.

At the time of Peter’s injury both he and Cheryl worked. Peter was a university lecturer and Cheryl a primary school teacher. At the time of this DVD recording Peter was 2.5 years post-injury, and Cheryl reflects on her experience of the rehabilitation ward, preparing to come home and being at home.

The video may take a few moments to load.

 

Jonathan's mother(1 min)

Jonathan was hit by a car when he was 12 years old. He had a severe traumatic brain injury.

At the time of the injury he had a very poor prognosis -unlikely to regain any previous function. He had extensive rehabilitation. He is now in his mid 20's living with his family. He is learning to drive and has several part time jobs. He has a brother.

Jonathan's mother is also called Cheryl. In this module she is referred to as "Jonathan's mother" so as to ensure there is no confusion between the two Cheryl's. She has written the book Paper Cranes: A mother's Story of Hope, Courage and Determination.

The video may take a few moments to load.

 

 

 

Impacts on families

ABI and SCI's have a huge impact on families.

Many families adapt well and show amazing strength once the initial shock and distress have passed. This is true both of families supporting someone with a traumatic brain injury (TBI) or a spinal cord injury (SCI).

There are many similarities for both ABI and SCI on families. There are also some differences.

Acquired Brain Injury

Up to 50% of families supporting a relative with ABI go through some period of anxiety or depression.

The distress of families decreases when the family member feels that they have good social supports.

Some of the challenges families with a member with TBI may deal with are:

• Changes in the person with the TBI, e.g. mental stress, difficulty personality, behaviour problems, fatigue
• Impact of carers
• Legal issues
• Consent
• Guardianship
• Financial concerns

Spinal Cord Injury

Up to 50% of families feel psychological distress in the period leading up to the discharge of their relative with SCI. However by 1 year post-discharge, this can have dropped to under 20%.

Up to 25% of partners feel as if they experience a heavy burden of care in supporting their spouse with a SCI.

Partners who marry someone with a SCI are generally more satisfied with the relationship than spouses whose partner sustained a SCI.

Over the longer term, spouses who did not have to play a significant carer role with their partner were generally less depressed

Some of the specific challenges families may deal with are:

• Isolation/Alienation
• Fatigue
• Incontinence
• Impact of carers
• Access issues
• Cost of equipment
• Home modifications
• Community
• Impact of Pain

 

 

 

Families provide support

• Emotional support
• Practical support
• Supervision and prompting
• Encouraging the person with the injury
• Organisation
• Advocacy
• Networking
• Social and financial support
• Communication
• Providing knowledge to staff