Burden of caregiving, social support and quality of life of informal caregivers of patients with cerebral palsy

Year 2018, , 58 - 64, 10.06.2018

Chidimma J. Ahanotu Peter O. Ibikunle Adebisi İ. Hammed

https://doi.org/10.31459/turkjkin.418491

Cited By: 8

Abstract

The study investigated the burden of caregiving, social support and quality of life of informal caregivers of patients with CP. The study adopted a cross-sectional survey research design. A total of 78 informal caregivers participated in this study. The quality of life was assessed using the World Health Organization Quality of Life Bref (WHOQOL-Bref). Also, social support was assessed using Multidimensional Scale of Perceived Social Support (MSPSS). However, the level of burden of caring for CP patients on caregivers was estimated with the use of Caregivers Strain Index (CSI). The Spearman Rank Order Correlation test was used to test the correlation among the caregivers’ quality of life, social support, and burden and some patient and caregiver related variables. The statistical significance was accepted for a p value of <0.05. The outcome of this study showed that the degree of strain on the caregivers was significant, same as the impact on their quality of life. However, the caregivers’ level of strain has no significance on their level of perceived social support. Also, majority of the caregivers in this study experienced a considerable amount of burden and the level of perceived social support of caregivers was moderate. The caregivers also had a high quality of life in all domains. It was therefore concluded that caring for a child with CP had significant impact on the level of burden, social support and quality of life of informal caregivers. Also, the informal caregiver had a significant level of burden, a moderate of social support mainly from family and significant others and a high level of quality of life. It was thus recommended that study should be carried out to compare the level of burden, perceived social support and quality of life between informal caregivers of patients with CP and caregivers of healthy children.

Keywords

Care giving, cerebral palsy, social support, quality of life

References

• Adegoke BO, Adenuga OO, Olaleye OA, Akosile CO. Quality of life of mothers of children with cerebral palsy and their aged matched controls. African Journals of Neurological Sciences, 2014; 33 (1): 1-10.
• Almeida T, Sampaio FM. Stress and social support in caregivers of individuals with cerebral palsy. Psic Saúde and Doenças, 2007; 8: 145–151. Basaran A, Karadavut K, Uneri S, Balbaloglu O, Atasoy N. The effect of having a children with cerebral palsy on quality of life, burn-out, depression and anxiety scores: A comparative study. Eur J Phys Rehab Med, 2013; 49(6): 15-22.
• Blair E, Watson L. Epidemiology of cerebral palsy. Semen Fetal Neonatal Medicine, 2006; 11: 117.
• Brehaut JC, Kohen DE, Raina P, Walter SD, Russell DJ, Swinton M, O'Donnell M, Rosenbaum P. The health of primary caregivers of children with cerebral palsy: How does it compare with that of other Canadian caregivers? Pediatrics, 2004; 114(2): 182-91.
• Button S, Pianta RC, Marvin RS. Partner support and maternal stress in families raising young children with cerebral palsy. Journal of Developmental and Physical Disabilities, 2001; 13: 61–81.
• Davis E, Shelly A, Waters E, Boyd R, Cook K, Davern M, Reddihough D. The impact of caring for a child with cerebral palsy: quality of life for mothers and fathers. Child Care, Health and Development, 2009; 36: 63–73.
• Eisenhower A, Blacher J. Mothers of young adults with intellectual disability: multiple roles, ethnicity and well-being. Journal of Intellectual Disability Research 2006; 50: 905–916.
• Eker L, Tuzun EH. An evaluation of quality of life of mothers of children with cerebral palsy. Disability in Rehabilitation, 2004; 26(23): 1354-1359.
• Feldman M, McDonald L, Serbin L, Stack D, Secco ML, Yu CT. Predictors of depressive symptoms in primary caregivers of young children with or at risk for developmental delay. Journal of Intellectual Disability Research, 2007; 51: 606–619.
• Greenberg JS, Knudsen KJ, Aschbrenner KA. Prosocial family processes and the quality of life of persons with schizophrenia. Psychiatric Services, 2006; 57: 1771–1777.
• Kelman HR, Thomas C, Tanaka JS. Longitudinal patterns of formal and informal social support in an urban elderly population. Social Science of Medicine, 1994; 38: 905–914.
• King G, King S, Rosenbaum P, Goffin R. Family-centered caregiving and well-being of parents of children with disabilities: linking process with outcome. Journal of Pediatric Psychology, 1999; 24: 41–53.
• Mastrian KG, Ritter C, Deimling G. Predictors of caregiver health strain. Home Healthcare Nurse, 1996; 14: 209–217.
• Milbrath VM, Cecagno D, Soares DC, Amestoy SC, Siqueira HCH. Being a woman, mother to a child with cerebral palsy. Acta Paulista de Enfermagem, 2008; 21: 427–431.
• Okurowska-Zawada B, Kułak W, Otapowicz D, Sienkiewicz D, Paszko-Patej G, Wojtkowski J.. (2011). Quality of life in children and adolescents with cerebral palsy and myelomeningocele. Pediatr Neurol, 2011; 45(3): 163-168.
• Ones K, Yilmaz E, Cetinkaya B, Caglar N. Assessment of the quality of life of mothers of children with cerebral palsy (primary care-givers). Neurological Rehabilitation in Neural Repair, 2005; 19(3): 232-327.
• Ones K, Yilmaz E, Cetinkaya B, Caglar N. Assessment of the quality of life of mothers of children with cerebral palsy (primary caregivers). Neurological rehabilitation in Neural Repair, 2005; 19(30): 232-327.
• Pelchat D, Lefebvre H. A holistic intervention program for families with a child with a disability. Journal of Advanced Nursing 2004; 48: 124–131.
• Pfeifer LI, Silva DB, Lopes PB, Matsukura TS, Santos JL, Pinto MP. Social support provided to caregivers of children with cerebral palsy. Child Care Health Dev, 2014; 40(3): 363-369.
• Raina P, O’Donnell M, Rosenbaum P, Brehaut J, Walter SD, Russell D, Swinton M, Zhu B, Wood E. The health and well-being of caregivers of children with cerebral palsy. Pediatrics, 2005; 115: 626–636.
• Sherman EMS, Griffiths YS, Akdag S, Connolly MB, Slick DJ, Wiebe S. Sociodemographic correlates of health related quality of life in pediatric epilepsy. Epilepsy and Behavior, 2007; 12: 96-101.
• Wanamaker CE, Glenwick DS. Stress, coping, and perceptions of child behavior in parents of preschoolers with cerebral palsy. Rehabilitation in Psychology, 1998; 43(4): 297–312.
• White-Koning M, Grandjean H, Colver A, Arnaud C. Parent and professional reports of the quality of life of children with cerebral palsy and associated intellectual impairment. Developmental Medicine and Child Neurology, 2008; 50: 618–624.
• WHOQOL Development of the world health organization WHOQOL-BREF Quality of life assessment. Psychological Medicine, 1998; 28: 551-558.
• Zimet GD, Dahlem NW, Zimet SG, Farley GK. The multidimensional scale of perceived social support. Journal of Personality Assessment, 1988; 52: 30-14.