Examining The Relationship

Examining the Relationship Between

Caregiver Coping and Self-Efficacy

And the Progression of Parkinson’s Disease

Kerry Bridge, Megan Crockett, Sarah Lazar,

Don Robeniol, Giles Sano

California State University, Long Beach

Chapter one

Parkinson’s disease (PD) is a chronic, progressive neurodegenerative disorder that affects approximately 680,000 individuals in the US (Marras et al., 2018). Based on the US Census Bureau population projections and calculations by Marras et al., that number will increase notably to 930,000 by 2020 and reach 1.2 million by 2030. According to the American Parkinson Disease Association (2018), a new PD diagnosis is made every nine minutes, making it the second most common degenerative neurological disease after Alzheimer’s Disease.

PD is caused by early death of dopaminergic neurons in the brain, resulting in a deficiency in dopamine within the basal ganglia (Kalia & Lang, 2015). This deficiency causes the manifestation of classical parkinsonian motor symptoms: bradykinesia, dystonia, muscular rigidity, tremor at rest, and postural and gait impairment (Moustafa et al., 2015; Sveinbjornsdottir, 2016). Non-motor symptoms of PD include depression, fatigue, sleep disorders, and cognitive decline (Amara & Memon, 2018; Calejo et al., 2016). As the previously cited studies have suggested, the clinical manifestations of PD result in a significantly decreased quality of life in those affected by the disease, as well as their family members.

Recent studies indicate that family members, particularly spouses, frequently serve as the primary caregivers of those with PD, spending approximately 50 to 60 hours per week providing care without monetary reimbursement (Theed, Eccles, & Simpson, 2017; Habermann & Shin, 2017). According to Bhimani (2014), PD costs the United States’ economy an estimated $25 billion per year in Social Security payments, medical treatments, and lost income. Concurrently, informal caregivers–spouses, children, other family members–provide $375 billion worth of unreimbursed support by caring for patients at home instead of relocating them into residential care facilities. Additionally, as Bhimani suggests, some caregivers may give up jobs, leisure time, and social activities to provide care for their loved ones. Background

PD is a chronic disorder that results in decline of quality of life as the disease progresses, with mean disease length ranging ten years (Theed, Eccles, & Simpson, 2017). In addition to the financial burden associated with the disease, a common sentiment expressed by many PD patients and their families is that they did not receive adequate information regarding disease management at home, as well as an overall feeling of unpreparedness for the inevitable stress and physical strains necessary for the disease management (Habermann & Shin, 2017). In discussing care of the PD patient, however, it is important to consider not only how the disease affects the PD individual him- or herself, but the caregiver–most often the spouse–as well. According to Boersma et al. (2017), caregivers need to be treated as individuals separate from the patient, and the burden they experience should be considered as unique.

According to Ronald, Jenkins, and Johnson (2010), burden can be split into three facets: physical, mental, and social. Physical burden primarily depends on disease severity and the intensity of care required. Mental burden depends on the level of personal and emotional connection between the spouse and the individual with the disease. Finally, social burden reflects intrapersonal conflicts, level of appreciation, and the availability of social contacts and support to the caregiver. Considering these different elements of burden, as well as feelings of lack of preparedness to take on the role (Habermann & Shin, 2017), it is critical to consider how perceived self-efficacy and ability to cope in spouses as caregivers are affected by time and progression of PD.

Statement of Problem

Extensive review of current literature has shown a significant knowledge gap surrounding PD progression as it relates to the overall self-efficacy of the PD caregiver. According to Roland (2010), most studies have focused on the physical demands and tasks associated with caring for the individual with PD, with less than 1 percent focusing on the emotional implications and overall mental burden. Although the measurement of burden is not new, many of the previous studies have fallen short in evaluating self-efficacy and coping as they relate to the time spent in the caregiver role.

Significance of Problem

Caregivers of people with PD have many symptoms that put them at risk for caregiver burden. Greenwell et al. (2014) conducted a systematic review from 1991 to 2012 that documented the psychosocial and physical changes in caregivers for people with PD. The authors found numerous articles positing that caregivers had experienced psychological symptoms, such as increased symptoms of depression, increased anxiety, and decreased optimism. Shin, Lee, Youn, Kim, & Cho (2012) found that spouses and children of people with PD had symptoms of depression, which was also a predictor for caregiver burden. The psychosocial aspects of caregivers were affected as demonstrated by increased feelings of loneliness and decreased support from others. The burden of assisting people with Parkinson’s disease began a steady decline of caregiver’s physical health (Greenwell et al., 2014). Shin, Lee, Youn, Kim, & Cho (2012) conducted another study that concluded that caregiver burden is higher in PD compared to Alzheimer’s, largely due to the neuropsychiatric symptoms that accompany PD.

Self-efficacy is defined as one’s feelings about one’s ability to accomplish goals or bring about desired outcomes (Bender & Ingram, 2018). A key assumption of self-management is that enhancing self-efficacy fosters adaptive health related behaviors and improve health outcome. Self-efficacy is comprised of one’s ability to keep aspects of their illness from interfering with their lives and the ability to do other activities to manage their condition outside of medication (Cameron, Voth, Jaglal, Guilcher, Hawker, & Salbach, 2018). Zhong, Peppard, Velakoulis, and Evans (2016) noted that the time spent caring for a spouse with PD was directly associated with a reduction in the perception of the caregivers mental and physical health. This study also found a positive correlation between the duration of the disease and the increase in physical and emotional demands on the caregiver and perceived self-efficacy. Incorporating self-efficacy PD management would be an effective strategy in assisting people with PD and their caregivers with coping and adaptation to worsening symptoms of PD.

Purpose of the Study

The purpose of this descriptive correlative study is to explore the relationship between the progression of PD and self-efficacy as well as coping in spouses of persons with the disease. It is hopeful that this study will help develop an increased appreciation for the unique caregiver burden that is experienced by caregivers of individuals with PD.

Research Questions

The following general question was the driving force behind this study: How do caregiver self-efficacy and coping change with time and as PD progresses?

Primary research questions:

What is the relationship, if any, between PD progression and perceived self-efficacy of the spouse to persons with the disease?

What is the relationship, if any, between PD progression and coping of the spouse to persons with the disease? Summary

PD is a chronic, progressive degenerative neurological disorder that affects hundreds of thousands of individuals in the US. Its diagnosis is typically sudden and unexpected, resulting in the spouses of those affected taking on the role as the informal caregiver with very little preparation, thus putting them at risk for caregiver burden. Research has exhibited a relationship between the quality of life of the PD patient and the burden perceived by their caregiver (Corallo et al., 2017). Burden experienced by caregivers is related to the management of symptoms, level of care required for activities of daily living, personal perception of the ability to control the disease, perceived support, finances, and knowledge of the disease (Lageman, Mickens, & Cash, 2015). The purpose of this study is to evaluate the relationship, if any, of the progression of PD with caregiver self-efficacy and coping.

References

Amara, A. W., & Memon, A. A. (2018). Effects of Exercise on Non-motor Symptoms in Parkinson’s Disease. Clinical Therapeutics, 40(1), 8-15.

Bender, A., & Ingram, R. (2018). Connecting attachment style to resilience: Contributions of self-care and self-efficacy. Personality and Individual Differences, 130, 18-20.

Bhimani, Rozina. (2014). Understanding the burden on caregivers of people with Parkinson’s: A scoping review of the literature. Rehabilitation Research and Practice, Rehabilitation Research and Practice, Annual, 2014.

Boersma, I., Jones, J., Coughlan, C,. Carter, J., Bekelman, D., Miyasaki, J., Kutner, J., & Kluger, B. (2017). Palliative Care and Parkinson’s Disease: Caregiver Perspectives, Journal of Palliative Medicine, 20(9), 930-938

Calejo, M., Goncalves, A., Moreira, I., Vila-Cha, N., Damasio, J., Lima, S., Cavaco, S., Bastos Lima, N., Mendes, A., & Fernandes, J. (2016). Quality of life in Parkinson’s disease: Impact of non-motor symptoms. European Journal Of Neurology, 23(S2), 295.

Cameron, J., Voth, J., Jaglal S., Guilcher, S.T., Hawker, G., & Salbach, N.M. (2018). "In this together": Social identification predicts health outcomes (via self-efficacy) in a chronic disease self-management program. Social Science & Medicine, 208, 172-179.

Corallo, F., De Cola, M. C., Lo Buono, V., Di Lorenzo, G., Bramanti, P., & Marino, S. (2017). Observational study of quality of life of Parkinson’s patients and their caregivers. Psychogeriatrics, 17(2), 97-102. doi:10.1111/psyg.12196

Greenwell, K., Gray, W. K., van Wersch, A., van Schaik, P., Walker, R., (2014) ‘Predictors of the psychosocial impact of being a carer of people living with Parkinson’s disease: A systematic review’ Parkinsonism & Related Disorders; 21 (1): 1-11

Habermann, B., & Shin, J. Y. (2017). Preferences and concerns for care needs in advanced Parkinson’s disease: a qualitative study of couples. Journal of Clinical Nursing, 26(11/12), 1650–1656.

Kalia, L.V. & Lang, A.E. (2015). Parkinson’s disease. The Lancet, 386(9996), 896-912.

Lageman, S. K., Mickens, M. N., & Cash, T. V. (2015). Caregiver-Identified Needs and Barriers to Care in Parkinson’s Disease. Geriatric Nursing, 36, 197-201.

Marras, C., Beck, J., Bower, J., Roberts, E., Ritz, B., Ross, G., . . . Tanner, C. (2018). Prevalence of Parkinson’s disease across North America. NPJ Parkinson’s Disease, 4(21) .

Moustafa, A. A., Chakravarthy, S., Phillips, J. R., Gupta, A., Keri, S., Polner, B., Frank, M. J., & Jahanshahi, M. (2016). Motor symptoms in Parkinson’s disease: A unified framework. Neuroscience and Biobehavioral Reviews, 68(C), 727-740.

Roland, K. P., Jenkins, M. E., & Johnson, A. M. (2010). An exploration of the burden experienced by spousal caregivers of individuals with Parkinson’s disease. Movement Disorders, 25(2), 189-193.

Shin, H., Lee, J., Youn, J., Kim, J., & Cho, J. (2012). Factors Contributing to Spousal and Offspring Caregiver Burden in Parkinson’s Disease. European Neurology, 67(5), 292-296.

Shin, H., Youn, J., Kim, J., Lee, J., & Cho, J. (2012). Caregiver Burden in Parkinson Disease With Dementia Compared to Alzheimer Disease in Korea. Journal of Geriatric Psychiatry and Neurology, 25(4), 222-226.

Sveinbjornsdottir, S. (2016). The clinical symptoms of Parkinson’s disease. Journal of Neurochemistry, 139(S1), 318-324.

Theed, R., Eccles, F., & Simpson, J. (2017). Experiences of caring for a family member with Parkinson’s disease: a meta-synthesis. Aging & Mental Health, 21(10), 1007–1016.

Zhong, M., Peppard, R., Velakoulis, D., & Evans, A. H. (2016). The relationship between specific cognitive defects and burden of care in Parkinson’s disease. International Psychogeriatrics, 28(2), 275–281.