The patient's family plays a vital part in the rehabilitation process. One of the most important factors in the patient's recovery is family involvement and support.
Family members are affected by the patient's disability, and, many times, become co-managers of the patient's care. They may experience many changes as a result of the patient's disability. Family members often join the patient in a period of grief caused by a loss of function. Severe injury, chronic disease, or disability may mean a change in family roles. For example, a housewife may need to return to work and become the breadwinner after her husband's disability; a son may need to adjust his work schedule to help care for an elderly parent. These changes can cause stress and conflict within the family. Financial problems due to medical bills or unemployment can occur, adding more stress on the family. Changes in living arrangements, childcare issues, and community re-entry can all pose new problems for the patient and family.
By working together with the rehabilitation team, the patient and family can help reduce some of the adverse effects of disability. This can be accomplished by:
Identifying the adverse effects of disability within the family
Working together on realistic solutions
Participating in family education and counseling
Planning for discharge and community re-entry
Family acceptance and support can help a patient deal with issues related to self-esteem and self-image following disability. Positive attitudes and reinforcement from loved ones often help the individual work towards recovery. Family participation, flexibility, and open communication can overcome many barriers associated with disability. Families who inspire hope can help the individual to adjust and become more confident in his or her own abilities.
While motivation for taking care of one's loved ones is often high, the emotional and physical toll of caregiving can be overwhelming at times. First of all, consider the amount of caregiving that is expected of families outside the rehabilitation facility. According to the American Medical Association, the majority of caregivers are unpaid family members or friends that provide care on a full- or part-time basis, even when care was also being managed by a health care professional.
As a result, caregivers experience unique stress. Most research supports that caregivers feel unprepared for their caregiving role. Often they feel isolated, anxious, and depressed. An additional concern is maintaining adequate communication with the health care team and other available resources. This role is time-consuming and can be confusing. The multiple roles a caregiver must constantly employ include:
Investigating and suggesting resources to ensure independence in the home for a disabled family member
Facilitating and providing physical care for the impaired family member
Contributing financially to the home
Caring for other family members
Responding to the inevitable ups and downs in rehabilitation care
Ensuring that contractors and builders are licensed and ensured
Caregivers, like patients, must be educated to meet the demands of the rehabilitation plan that is set up for their family member. In fact, they should be included in the development of this plan. Specifically, educational topics should include:
The cause and effect of the injury or illness
Any potential complications of the injury or illness, and information on how to recognize and prevent these complications
Medications, their schedule, side effects, and functions
Required exercises and task-learning techniques
The social and emotional tasks of a person in rehabilitation
How to reintegrate the person into the community after rehabilitation
If this preparation is not provided, caregivers may be overprotective of their family member and unwittingly impede the recovery process.
Not only should caregivers be educated for their role, they must also be supported. Whether this is a counseling program or a problem-solving supportive team interaction, support helps diminish the isolation and anxiety associated with caregiving.
Caregivers must also find time for themselves, away from their caregiving roles. This perhaps is the most important, yet least available, coping strategy that may be accessible to caregivers.
It would be helpful, as suggested by recent research, to actually study the needs of caregivers prior to releasing an injured family member into the home. For example, necessary home modifications or a lack of care providers is critical information in making a successful rehabilitation plan for persons recovering from illnesses such as stroke or traumatic brain injury.
The importance of caregivers cannot be underestimated in the role of the successful rehabilitation of injury survivors. As caregivers gain confidence they and their loved ones, should find caregiving less stressful and more rewarding.