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Understanding Some of the Challenges Families with SCI ExperienceBy Maria Cabas
Based on the Family System Theory, family is a system in which every member is interconnected. Imagine a mobile where all the parts hang in balance – this concept of the family as a mobile was developed first by Virginia Satyr with the visual understanding that when one piece moved, the rest of the whole mo-bile moved. That is similar with what is going on in the family when someone was diagnosed with spinal cord injury. This is a traumatic major life changing event which affects the person with SCI and their family, bringing significant changes within the family. It is important for every family member to have an under-standing of what has happened, about the SCI, and to be informed about the changes they may expect to family life. There will be a period of great adjustment post –injury for the person who has SCI and their family members. There is no “typical” family following SCI. Each situation is unique, and each family will eventually create a system that works best for them.
In this article, we will explore some of the challenges with which the family has to contend. There are some main themes that always come up in this situation. Issues include: accommodation, financial, equipment and supply, the importance of educating family members about SCI, health care, care giving, transport, navigating the system, relationship issues, sexuality and accessibility. We will not discuss all of them, but we can start with a few today.
Families play a vital role in supporting family members who have SCI but, in general, they have little prior knowledge of SCI. They need concrete information about the loved one with the SCI including diagnosis, prognosis, treatment, rehabilitation and adaptation to the new lifestyle. By learning what to expect post-injury, the family members need to develop the capacity and ability to support and assess the loved one with SCI in recovery. They have to be included in discharge planning meetings to know what to expect when their loved one leaves the hospital. All of that information could be overwhelming for the family members and for the person with SCI.
Between 45 to 50% of people with SCI need personal assistance with their daily activities. The person with SCI has lots of specific needs in daily care like getting in and out of bed, managing bowel and bladder issues, bathing, and daily skin check for pressure sore prevention and dressing. The lower the level of injury, the less assistance is needed.
According to Statistics Canada in 2012, the number of family members responsible for care of loved ones with a long term health condition, represent one in four (28%) or an estimated 8.1 million. If your spouse or partner is your primary caregiver at the initial period, it is not recommended for long-term, because the role of the partner/caregiver can be blurred, which will create problems in couples’ intimate relationship. If at all possible, it is best to have the Community Home Care Provider or a paid Personal Care Attendant (PCA) provide the majority of long-term care while a loved one provides occasional care. It is also important to maintain a healthy relationship with your spouse by still sharing as much life responsibility as possible and learning new life skills to help the relationship in the long run. It is important to help children learn that there are changes in the lifestyle of the family and they need to be prepared to pitch in if necessary. Focusing on your strengths and abilities post-injury can also help your family members become a team with lots of strengths and abilities. Communication is the key.
Financial stress/security could be huge issues after spinal cord injury for family; from meeting everyday living expenses like utilities, medical expenses, equipment and supplies not covered by other systems, transport and personal care, to achieving access to financial resources available. Sometimes financial issues become employment issues, too. Returning to work if possible sometimes takes a long time based on recovery. Some people were able to return to previous employment, either full time or part time but it requires a lot more effort and additional resources. Ongoing medical appointments and additional care needs are required. It is hard to find a flexible employer that understands and accommodates people with SCI and their special needs. Finding appropriate work after a SCI can be a challenge, in which sometimes more education and retraining is involved. Some people set up their own business. It will be even more difficult if the person with SCI didn’t work prior to the injury. Changing policies of third party payers like Manitoba Public Insurance, Worker Compensation, Victim Compensation and government (Employment Income Assistance, Canada Pension) can also affect the financial situation. Sometimes the bureaucracy makes it hard to access the financial funds. Retraining and access to education could also be beneficial in finding a job after SCI.
There is a strong association of employment and education with quality of life after SCI which includes social inclusion, connecting with people and participation in the community.
After the hospital, the person with SCI sometimes returns home after the house has been modified to meet their needs (which can be very costly and may not be feasible in rental), and sometimes they go to alternative transitional accommodation. The family of the person with SCI is also affected by the shortage of housing availability and accessibility to rent or buy and modify, or move into public housing, which forces people to move away from their social network and support. Others found that the instability of renting meant that they were required to find alternative accommodation on short notice when leases were not renewed. Because of lack of accessibility they may not be able to visit family and friends or join them in social situations or accessing events at school for their children or sports grounds or other public places that are not accessible. Some people had to give up their accommodations when they were in hospital. Independent living is always encouraged and supported as opposed to living in a nursing home. The benefits include better health outcomes, fewer hospitalizations and easier reintegration in the community and increased quality of life and maximized life choices.
Transportation could be huge issues for somebody with SCI and their family. Purchasing and modifying a vehicle is very expensive especially if you do not have a third party payer. The transportation needs depend on the level of SCI. Travel may be required for medical appointments, work, social activities, maintaining family relationships, shopping, school, vacations and others. For somebody who uses a wheelchair for mobility, specific modification has to take place in a vehicle depending if they are able to drive or they are the passenger. Many people with SCI are trapped, relying on their family for transport which means sometimes the family has to miss work or school. There is a lot of reliance placed on family and sometimes friends to provide care and support for the person with SCI. Public transportation is not necessarily reliable all of the time or safe. Logistics could be a huge accessibility barrier. The ability to move around in the community gives people independence and reduces feeling of isolation. Public transportation needs to improve. The wheelchair taxis are not necessarily reliable, safe, flexible and affordable for everybody.
These issues discussed above are just a few of the multiple problems families with SCI experience. Life will never be the same in a family, but it can still be enjoyable even if it is different. It takes a long time to deal with the changes and feelings as a result of SCI but families are resilient. Each family member may need to learn to communicate well, have lots of patience, work together and support each other better. Being honest with your feelings and sharing with each other helps the family members to cope and grieve with the changes. Sometimes the whole SCI reality feels like a bad dream. Everybody copes differently with the effects of SCI. Common feelings the family members experience are: shock, anger, fear, anxiety, confusion and out of control. Those feelings vary during the adjustment to SCI and they are normal. Getting back into a new daily routine will help families move on slowly and work as a team. Eat healthy, sleep enough, exercise, meditate, and take time for yourself. Those are some healthy adaptations and coping elements that can relieve your stress. Life will get better, and sometimes it brings family members closer by discovering strengths and abilities they did not know they had be-fore the SCI injury. Don’t be afraid to ask for help when you need it. Life goes on.
• Healthy Living: Relationships An article from the Pushin’ On, Vol 19, 2001. University of Alabama at Birmingham www.spinalcord.uab.edu/show.asp?durki=36069
• Maire Sinha, “Portrait of Caregivers, 2012,” Spot-light on Canadians: Results from the General Social Survey, Statistics Canada catalogue no. 89-652-X (September 2013).
• Nora Spinks and Nathan Battams, Families and Work in Canada (October 2015).
• Shona Bates, Rosemary Kayess, Karen R. Fisher (2013), Research into Maximising Life Choices of People with a Spinal Cord Injury, for Spinal Cord Injuries Australia, Social Policy Research Centre Re-port 01/13, Sydney.
• Statistic Canada 2012