Resilience, Relationships, Traumatic Brain Injury
About
My interest in my research topic is driven by observation of the caregiver role where one person is the survivor of traumatic brain injury, and the other the caregiver. I have observed the relationship between two people change over time and the ups and downs in the relationship. The survivor was 22 years of age when TBI occurred and is now in his mid 60's. His caregiver was in a relationship with him, but the role changed significantly post injury.
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The time of the TBI occurring was back in the 70's when there was not as much knowledge as there is now about the life time effects of TBI, but there is still a long way to go.
I have read through freedom of information with permission the case notes and seen that follow up back then was minimal, education about the long term effects was non-existent, and initially the parents were left to do the best they could.
They provided care until they were too old and have since passed away.
The caregiver remained supportive and has over the last 10 years taken on the full role of caregiver. Their relationship that was is very different and there is now co-dependency.
Areas that have been taken on by the caregiver have been health care, nutritional care, dental care, as well as obtaining excellent accommodation in independent living and they remained good friends.
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The observed relationship has given me the passion to pursue my research and I hope that from it I can provide evidence to inform the health system and agencies such as the National Disability Insurance Scheme, of how difficult it can be to tap in to resources and supports when no information is forthcoming.
My research aims to show relationships can thrive and resilience can be sustained as long as there are supports in place, resources available, and knowledge. In addition I want to explore possible interventions that may assist in learning how to build resilience, sustain resilience and protect relationships from breakdown.
I am really hoping to make a difference for those who are currently living with traumatic brain injury and their caregivers. In addition I hope my research contributes to making a difference for those who will through unforeseen circumstances find themselves living with traumatic brain injury and their families become caregivers.
Official Site of Resilience, Relationships, Traumatic Brain Injury
What is needed to sustain resilience in relationships?
My research aimed to explore how resilience can be sustained in relationships after traumatic brain injury. I used a survey on Survey Monkey for caregivers who were parents, spouse, partners, siblings, adult children, friends, other relatives. Caregivers answered the questions in the survey which provided valuable information about what is needed to help sustain resilience.
Who are the caregivers
Caregivers are parents, spouses, partners, siblings, friends, other relatives who care before the person sustained TBI and after. They are people who want the best for their loved one.
Caregivers are at risk of emotional distress, depression, mental health alteration. It is important to take care of self. Identify when help is needed and feel supported.Â
Many aspects of providing care have an impact on daily life. Financial strain can cause relationship issues, as well as resentment.
Who cares for the caregiver? What could be put in place to care for the caregiver?
What is already in place but not known about?
How can caregivers access supports?
That is what this research is aiming to find out.
Caregiver Questionnaire
Thanks for your interest in my research. Your responses to the survey are appreciated and they are valued. They will contribute to the research and your time will not be wasted. Thank you
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Participants who completed the survey have given informal consent by taking part in the survey.
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Following analysis of data collected from the survey there will be a Stage 2 study for investigating what Intervention works to help to build resilience. If you are interested in participating in Stage 2 please provide your name and contact email. Notification about the commencement of Stage 2 will be sent to your email.
The responses from the survey you provided will still remain anonymous and no identification of any responses you provided in Stage 1 will be available anywhere.
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This Research Project
My research involved participants going to Survey Monkey through a link provided and answering the questions in the survey.
A much larger number of participants was needed but at least 157 caregivers responded to the survey. The survey identified what caregiver needs are, what support services they have accessed or what support services they would like. In addition what is missing in terms of supports.
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There were questions about resilience and participants were able to recognize through answering the questions if they are achieving resilience but just had not recognized it yet.
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Through answering the questions a snap shot of caregivers was found to support existing research and literature as well as add valuable information that will enable future input in planning services specific to caregivers of survivors of TBI and ABI.
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As shown in the literature there were a high number of female caregivers compared to male caregivers. Many were partners or spouses. Some were siblings, friends, and parents.
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Coping was explored and there were several caregivers who were not coping, needed supports in place, and described altered mental health states.
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Behaviors of the survivors of TBI with were found to cause increased altered mental health status to caregivers and the most distress. There were little if no supports available to assist in addressing challenging behaviors. Behaviors that reduced social interaction were found to be the most disruptive and caused isolation as well as resentment. Most of the participants persevered and cared for the survivors of TBI at home and did not have them placed in alternative accommodation.
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Some behaviors did lead to involvement with the law and a small number were serious enough to include time in prison. This further strained relationships.
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By participating in the survey caregivers contributed a great deal in identifying what is known, what is needed, and how supports in the community can assist to sustain relationships where TBI is a factor.
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Further findings will be added, and the project will eventually move toward the design of an intervention for caregivers who are finding it difficult to sustain resilience in their relationships with survivors of TBI.
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Causes of Traumatic Brain Injury
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*Motor vehicle
*Motor bike
*Combat
*One punch
*Pedestrian
*Sky diving
*Risk taking behaviours
*Falls
*Industrial accidents
*Many more
Prevalence in Australia
Statistics from 2004 - 2005 of TBI in Australia shows 14043 males and 7262 females. Further statistics of causes showed specified and unspecified cause at 6666 males, 3459 females.
Sport/football 670 males 45 females, unspecified place of TBI accident 2627 males and 1059 females.
Accidents on highways were 2227 males and 921 females
Athletics and other causes were 1137 males and 183 females. Interestingly 153 males sustained TBI in the home in contrast to 1365 females higher than males in the home (AIHW, Australian Institute of Health and Welfare 2007).
According to the AIHW one in 45 people live with an Acquired Brain Injury (ABI)(432,700).
Three quarters of these (311,800) are under 65 years.
20,000 children under the age of 15 have ABI.
42% of people living with ABI have psychiatric disability.
The statistical evidence is strong for ongoing life time support, and more understanding of the need to nurture and support relationships.
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Mental health issues
Depression >30% averaging 5.8months post injury
Mania 10%
Irritability and aggression 35%
Pathological laughing and crying 24%
Alcohol abuse and dependence 22%
(Fann et al, 2004: Jorge et al 2004)
Anxiety disorders including phobias 70%
(Moore et al 2006
Approximately 20-60% of people with a TBI experience depression soon after the injury or even years later (Silver et al 2009)
Contact me to learn more about my research. https://www.facebook.com/christine.pryor.12382
A Snapshot at the Results so far
Brief insight in to the results more to come
Who are the caregivers
Supported by a great deal of literature, caregivers are mainly female (Blue). Many were in full time employment prior to taking on a caregiving role of a loved one. It will be acknowledged in the final thesis that financial strain has a big impact upon relationships, economically, and emotionally.
More results are to come. Please keep checking back for more information and updates especially about the intervention once publication of the initial thesis has occurred.
Relationships
57 participants answered the question about their relationship to the survivor of TBI. 59.65% were married and 19.30% were partners. 5.26% were parent/s and others were either single, widowed or friends.
Age of survivors of TBI
DEMOGRAPHICS
Participants came from across Australia in metropolitan and regional areas.
No matter where caregivers live the numbers remain the same. Females are the larger number and couples are financially disadvantaged.
The larger number of caregivers were from 40 - 49 years, 50 - 60 years and 60 and over. Interestingly older men are more prone to household accidents such as climbing ladders, getting on roofs, and other types of maintenance type accidents around the home.
The Financial impact of TBI and Caregiving
Many caregivers reported being previously in full time employment and then experiencing a significant loss of income due to having to change to part time, casual or not working at all. Income varied from different payments, compensation, and self funded and other income.
