Families of Disabled Adults
While adults living with disabilities face challenges of assimilation in the communities, their primary caregivers also experience similar hardships. Families of disabled adults undergo stigma and other challenges on their way to becoming contributing and respected members of the community. The research focuses on Latino families, and about two-thirds of adults with developmental disabilities live with their families rather than in a healthcare institution.
While many studies focus on adults living with disabilities or illnesses like schizophrenia, there is also a very significant mental health impact on the caregivers and immediate families of such adults. Sustaining a normal family function while coping with an illness that impacts a family member's physical or psychological health is a challenge for caregivers. In addition, families of disabled adults go through a perceived burden of providing the best care possible to their loved ones while also going through the stigma in society that comes from experiencing a disability or a condition like schizophrenia.
Psychological distress among family caregivers of adults with schizophrenia
Given that schizophrenia is a mental health condition that impacts the daily routine of an individual, significant changes are found among adults who are undergoing treatment. It brings forth a lot of responsibility on the caregivers to help the patient cope with their diagnosis and to help them respond well to the treatment and medication. As caregivers and family members aim to reduce the stressors in the patients' lives, they might experience significant psychological distress.
When it comes to families providing care for an adult family member with schizophrenia, there is a high risk of developing severe psychological problems like depression. There is about a 20% chance of Mexican-American caregiving families being at increased risk of depressive episodes. The contributing factors to depression may be a reduction in the average caregiver age, a lower education threshold, and a higher chance of community members developing mental health problems ranging from depression to schizophrenia.
The burden and stigma of the caregivers stem from the need to cope with caregivers' depression while managing a family member's health. Unfortunately, even with demographic variables and other changes in the symptoms, there remains a significant risk of developing depression.
Disparities in Health Promotion Among People With Intellectual Disabilities Research and Program Development
A health disparities framework helps better understand people's experiences with intellectual or physical disabilities. The disparities framework takes into account different approaches in research and studies to understand them in order to bridge the gap. For example, different countries have undergone study to analyze the social and psychological impact faced by people with intellectual disabilities.
Due to varying literature, there are apparent disparities in health promotion research and program development concerning people with intellectual disabilities. Contrasting the existing research with the health disparities framework helps understand the methodologies that can help reduce such deviations. It can positively impact the health services and promote better indication of health issues through better surveillance and other hybrid methods of healthcare.
Some of the strategies to reduce such disparity include better awareness and education of caregivers and decision-makers. The inclusion of such methods in mainstream healthcare systems will also help bridge the gap.
Experiences of Families With Relatives With Intellectual and Developmental Disabilities
The lives of caregivers are immensely impacted while caring for a loved one with intellectual and developmental disabilities. It reduces their participation in a social context and limits their reach when it comes to spending their time per their choice. Many caregivers have to sideline their lives in some margin or the other while undertaking the responsibility of providing good care for a family member with disabilities.
The experience of families with relatives who are suffering from intellectual and developmental disabilities requires additional support, which is often overlooked while constructing policies favoring adults with intellectual disabilities. Various life domains of a caregiver are influenced when they undertake the responsibility of a disabled family member. Their own support system requires revaluation, and better the provision of support services needs to be broadened for more inclusion. Also, managing relationships in their personal or professional lives also undergoes significant changes that should be considered.
Aging Family Caregivers: Policies and Practices
Parents or spouses taking care of relatives with disability need continual support to manage their lives in the caregiving position. As they age and require substantial support themselves, there is a need for improved policies and practices to enhance the support system of the individuals in the caregiving position. In addition, as the caregivers step into the later stages of their lives, they not only have to cope with the change in their age but also with the changing service needs when it comes to proper caregiving.
Additionally, the social metrics keep changing, impacting their personal lives and their relationships with the community. The policies and programs for adults with disabilities ought to include their caregivers and adequate support through the community, as well as means to mitigate the challenges arising out of long-term caregiving. Adults with behavioral disabilities are more likely to be highly dependent on their caregivers, which can significantly impact the entire family's mental health. Among aging family caregivers, those from minorities are at an increased risk of psychological issues.
Policy Challenges in Intellectual Disabilities
There are numerous variables that shape the policy making procedure for people with intellectual disabilities. Along with demographic and social factors, many factors are as diverse as a disability. Along with considering the severity and rarity of the disability, social factors are also to be considered for the broad inclusion of all individuals who live with a said disability. The cultural trends that factor in the community are also equally important. Policies for adults with intellectual disabilities have to be analyzed and take into account the following factors;
- Changes in the employment scenario
- Immigration and changing society
- Families and the circle of caregivers
All of these factors are important to consider because they have some amount of impact on the life of individuals with disabilities.
Longitudinal Outcomes of a Consumer-Directed Program Supporting Adults with Developmental Disabilities and Their Families
The Longitudinal impacts of a consumer-directed support program that supports adults with disabilities and their caregivers were reviewed in three periods. First, over nine years, from 1991 to 2000, the outcomes were studied on families facing the impact of intellectual disabilities and their individual service needs.
The three time periods, 1991, 1995, and 2000, show that the families experience a better service to their individual needs over time, along with increased community support and a significant reduction of the burden or stigma that caregivers feel. Service satisfaction is a prominent factor along with more autonomy of the individual with a disability and subsequent decrease of any obligation that a caregiver might feel with increased reliance of the patient on their support.
Families of individuals suffering from intellectual disabilities and psychological illnesses like schizophrenia go through a higher risk of mental illnesses and a significant increase in mental issues. Therefore, policymaking should not only broaden the spectrum for disabled individuals but also include concessions for caregivers who experience substantial burdens and stigma. In addition, the disparities in health promotion can be reduced when health-related and socio-cultural factors in policy development are taken into account.
It would also be better to consider how to reduce the responsibilities of aging caregivers, especially when it comes to social participation and maintaining the balance between their caregiving duties and pre-existing life domains. A consumer-directed support system can improve caregivers' experience and quality of living and the family members they care for. In addition, it can lead to better service satisfaction and a reduced feeling of burden and stigma.