Respite Programs for Caregivers: Benefits and Challenges

Abstract

Respite

Respite care gives breaks to caregivers, mostly who are unpaid and need a break from the everyday living of caring for loved ones. Most caregivers are caring for the elderly and sometimes children with special needs and often this experience can start to take a toll on them a break is always needed. Respite care helps both mentally and physically and helps maintain a healthy lifestyle. Not only for the caregiver but also for the person that is being taken care of. Respite care can be something planned that allows the caregivers to plan their life out or sometimes can be an emergency where the caretaker is somehow affected by the everyday duties of being a caregiver. There are challenges associated with care services given to people of different categories in the family. These challenges are more pronounced for the people with disabilities and be found in the elderly as well as children with disabilities. It is said that when caregivers are under a lot of pressure, the idea of abuse often shows it face and leaves the elderly and even children in a vulnerable situation to be abused by their caregivers. However, with the programs of respite offered by the wider society, these challenges can be reduced or better eliminated altogether.

Respite plays a significant role for the people taking care of the disadvantaged members of the family, but it gives an opportunity for the disadvantaged to interact with others. Respite can be categorized into different forms such as informal help from friends, respite services from the home of service user and out of home respites (Canavan & Merriman, 2007). Further, the types of respites can be categorized in terms of informal and formal, out of the home and in-home respites. Examples of local respite types include in-home models and out of homes models. Among the in homes models, there are home-based services which are offered by the social service department and public health nursery agency. With this kind of model, a qualified and licensed employee from the agency is expected to be at the home of the person in need of the services, which is expected to be rendered in 24 hours of the 365 days of the year.

Other types include sitter companion services which entail services rendered by individuals who are specially trained to provide services to people with special needs such as people with disabilities. Usually, this type of respite is provided by the specialized agencies which are able to sponsor the training individuals so as to link with members of the family. The out of the home model is giving chance to the respite service recipients to seek the services out of their homes. This model is applicable to adolescents who would be attracted in the out of home life. Importantly, it is most applicable to old people with memory loss who would be interested in regaining their memories (National Respite Network, 2017).

There are positive aspects associated with the taking care of a family member with a disability. First, it broadens the family members’ knowledge about a given aspect of the disability, for instance, most of the family members will research to find the reason and better ways to overcome the situation. It promotes cohesion, unity, and togetherness within the family. In addition, it creates connectedness between the family and other members of the community. It can reduce the cases of the family spending much money on the services rendered by other agencies. The positive aspect of taking care of a family member to most parents involves the positive transformation they have undergone. It is not specifically defined but put vague to be the process and how they handle the situation. Most parents who have disabled children spend longer time on their children than others with no disability. It is estimated that parents care for up to 20 years of the child life. There are about 75% of the parents within this category. This can be linked to what the parents observe to be the positive aspect of giving care (Beighton & Wills, 2017).  

Contrary taking care of a member of the family with a disability may cause stress and deterioration of mental health. Stress is a very serious topic when being a caregiver, it can lead to other things such as the reason to lash out or be mean to the patient. Which leads to abuse. Abuse is a big topic when thinking of caregivers. Sometimes it is done deliberately other times it is done as a way to let out the stress they are feeling in regard to be a caregiver. Mental health is also a very serious topic when thinking about how stable a caregiver is in being able to take care the elderly and children with disabilities. It takes a very strong individual to be able to maintain a healthy lifestyle both physically and mentally themselves all while making sure their family member is also living a healthy lifestyle.

 In addition, it can affect the decision about some other important aspects such as work, education, and training. The treatment of the people with disability has been marked by incidences of negative influence which has lowered the potential threshold at which the cases of prejudice are exhibited (Hoorn, 2015). Worst is that it can be associated with societal blame and stigma. The care for the people with disability may shift the focus of vision and even curtail the bearing of more children. It is known that families with a member with a disorder, physical disabilities, and other chronic diseases are likely to have challenges associated with stress as compared to their counterparts without (Navot et al., 2016).

 There are strategies which have been employed to ensure increased positive aspects in giving care for family members with disabilities. One of these strategies is meaning-focused coping. This is aimed at reducing both the emotional, physical and psychological burden associated with the stress culminating from taking care of the disabled members of the family. This model helps the person undergoing such stressful situations with coping and appraisal processes vital to their own perspectives. The model is pegged on the positive psychological conditions that are seen as the results to meaning-focused coping strategies and their implications. One of the strategies employed in this case is the positive reappraisal that is a technique for experiencing and viewing a worrying situation, concepts, emotions, and ideas so as to find more positive solutions to the situation. Some of the phrases used in this case include ‘there are more things to life’ and ‘worse things could have happened’.

 Meaning is perceived as creating coherence, order or making sense out of an individual’s existence. Therefore, this model is made out of the assumption that people tend to experience stress when they identify elements of inconsistencies about their global existence and personal appraisal. For instance, parents have a belief that their children though disabled have a chance and will be able to follow the well-known pattern of development and grow healthy just like other normal children. However, the diagnosis of any disability is likely to create a contrary opinion within them. They will remain with the option of relating their personal appraisal with the global meaning. Another strategy employed in this model is benefiting reminding, which involves making some efforts to accommodate the previously found benefit of the situation. In addition to this strategy, there are adaptive goal processes strategies. This entails revising goals as well as putting a plan for goal-directed focus in dealing with a problem. Importantly, there are strategies which involve the re-arrangement of the activities in terms of priorities. This is put in terms of the value of a meaning to life. Lastly, there is the involvement of spiritual meaning and strategies where some people find refuge (Beighton & Wills,2017).

 In a program to find out what the caregivers of the Frontotemporal Dementia undergo, there were studies conducted to evaluate the actual challenges faced by the caregivers. The objective of the study was to establish the problems these caretakers face and their actual needs (Diehl-Schmid et al., 2013). From the findings, it could be elucidated that the depression the caretakers go through in their endeavors is responsible for their dismal relations with the disabled. The method used for data collection, in this case, was a questionnaire in which 94 caregivers were interviewed. Results and findings were based on the demographic data of both the patients and caregivers (Diehl-Schmid et al., 2013). Some of the challenges faced by the caregivers include lack of manners and aggression from the disabled patients. Further to these, there were challenges associated with the gender, young age of the caregiver, physical impairments which needs the caretaker to be keener such as visual impairments. Additionally, caregivers faced the problem of depression because of aggressiveness of the patients and problem of bedridden were associated with some of the challenges which cause strain among them (Diehl-Schmid et al., 2013).

 From these findings, there are directional recommendations which can help in solving the future challenges faced by the caregivers. There is the development of insight which can help in designing programs which can be of use in changing the whole idea of caregiving. This includes factors such as giving them leave to go home at the time of fatigue. Again, of importance is that the supervision of the patients can be done using techniques such as video surveillance mechanisms. Together with these, there can be the employment of alarms to help save the eventualities associated with accidents. Importantly, there is giving the caregivers the emotional and educational support.

Getting respite care is important for caregivers and for their ability to continue to provide the correct care for their loved ones. While it can be planned there are times where respite care is needed on an emergency basis, sometimes a caregiver will face an emergency, such as a crisis. In-home respite care can typically be provided every day, if the caregiver is hospitalized for any reason respite care takes the burden off them and allows someone else to take care of the loved ones so the caregiver can focus on themselves.

With the educational support, the focus should be strictly on the language mastery and communication skills which have proven to be one of the challenges associated with the caregiving. Most caregivers need respite care to provide relief for the caregiver. It takes some of the burden and the stress away sometimes for days at a time and sometimes just for a couple hours to be able to focus on themselves and take the burdens away. Respite care can give caregivers a sense of relief. Respite care provides but are not limited to home-based care, skilled nursing, home health, residential programs and companionship and a sense of peace, relief and a break from being a caregiver.

References

• Beighton, C., & Wills, J. (2017). Are parents identifying positive aspects to parenting their child with an intellectual disability or are they just coping? A qualitative exploration. Journal of Intellectual Disabilities, 21(4), 325-345.
• Canavan, J., & Merriman, B. (2007). Towards best practice in the provision of respite services for people with intellectual disabilities and autism. Retrieved from https://aran.library.nuigalway.ie/bitstream/handle/10379/243/CFRC%20Towards%20best%20practice%20in%20the%20provision%20of%20respite%20services.pdf?sequence=1&isAllowed=y
• Diehl-Schmid, J., Schmidt, E. M., Nunnemann, S., Riedl, L., Kurz, A., Förstl, H., … & Cramer, B. (2013). Caregiver burden and needs in frontotemporal dementia. Journal of geriatric psychiatry and neurology, 26(4), 221-229.
• Hoorn, M. (2015). Intellectual Disability and Sexuality: The Missing Link. Retrieved from https://commons.emich.edu/cgi/viewcontent.cgi?referer=https://www.google.com/&httpsredir=1&article=1429&context=honors
• National Respite Network. (2017). ABCs of Respite: A Consumer Guide for Family Caregivers. Retrieved from https://www.nysadultday.com/assets/docs/Resources/ABCsofRespite_Updated_6-17.pd.pdf.
• Navot, N., Jorgenson, A. G., Vander Stoep, A., Toth, K., & Webb, S. J. (2016). Family planning and family vision in mothers after diagnosis of a child with an autism spectrum disorder. Autism, 20(5), 605-615.