Assessing the burden on primary caregivers of children with cerebral palsy and its relation to quality of life and socioeconomic aspects

Gutierrez²,

Special Care in Dentistry

et al. 2019

Aims To evaluate the quality of life (QoL) and burden of primary caregivers of children and young adults (PCCYAs) with and without disabilities. Methods A cross‐sectional study was carried out with sample composed of 336 PCCYAs with cerebral palsy (CP; n = 84), Down syndrome (DS; n = 84), autism spectrum disorder (ASD; n = 84), and without disabilities (control group: CG n = 84), matched by gender and age. The burden of caregivers was assessed with the Zarit Burden Interview (ZBI), whereas QoL was assessed using the WHOQOL‐BREF instrument. Results QoL and burden of CG presented better results compared to groups with disabilities, with the lowest environmental domain of all study groups (P <.001). The prevalence of burden was moderate for PCCAs of groups with disabilities. There was association between all WHOQOL‐BREF and ZBI domains and variables age, schooling, occupation and per capita income (Spearman's correlation coefficient, P <.05). There is a negative impact on WHOQOL‐BREF, with an increase in the level of burden of PCCAs with disabilities. Conclusion The majority of PCCYAs were unemployed married mothers, with low schooling and health problems. Older caregivers experience even higher burden and greater impact on QoL.

Section: Discussionsupporting

confidence: 79%

Section: Data Collection and Instruments Usedmentioning

confidence: 99%

Section: F I G U R E 1 Box-plot Graphs Of the Zarit Burden Interview mentioning

confidence: 99%

Section: F I G U R E 1 Box-plot Graphs Of the Zarit Burden Interview mentioning

confidence: 99%

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Quality of life and burden of caregivers of children and adolescents with disabilities

Gutierrez²,

Special Care in Dentistry

et al. 2019

“…Mothers were found to be the main responsible for the care of CSHCN, corroborating other studies developed with these children. According to the literature, although mothers receive support from family and friends, they take on the major part of care and become overloaded, developing physical and emotional exhaustion (23)(24) .…”

Section: Discussionmentioning

confidence: 99%

Accessibility of children with special health needs to the health care network

et al. 2019

Objective: To know how children with special health needs access the health care network. Method: This is a qualitative research of descriptive-exploratory type, developed using semi-structured interviews mediated by the Talking Map design. Participants were 19 family caregivers of these children in two Brazilian municipalities. Data were submitted to inductive thematic analysis. Results: Difficulties were mentioned from the diagnosis moment to the specialized follow-up, something represented by the itinerary of the c hild and his/her family in the search for the definition of the medical diagnosis and the access to a specialized professional; a gap between the children's needs and the care offered was observed in primary health care. Conclusion: The access of children with special health needs is filled with obstacles such as slowness in the process of defining the child's diagnosis and referral to a specialist. Primary health care services were replaced by care in emergency care units. Descritores: Criança; Acesso aos Serviços de Saúde; Cuidadores; Doença Crônica; Enfermagem Pediátrica. RESUMOObjetivo: Conhecer como se dá o acesso de crianças com necessidades especiais de saúde na rede de atenção à saúde. Método: Pesquisa qualitativa do tipo descritivo-exploratória, desenvolvida por meio de entrevistas semiestruturadas mediadas pelo desenho do Mapa Falante. Participaram 19 familiares cuidadores dessas crianças em dois municípios brasileiros. Os dados foram submetidos à análise temática indutiva. Resultados: Apontou-se dificuldades, do diagnóstico ao acompanhamento especializado, algo denotado pelo itinerário da criança e sua família na busca pela definição do diagnóstico médico e pelo acesso ao profissional especializado; no atendimento na atenção primária à saúde, observou-se um distanciamento entre as necessidades das crianças e a assistência ofertada. Conclusão: O acesso de crianças com necessidades especiais de saúde apresenta-se permeado por obstáculos, como a morosidade no processo de definição diagnóstica da criança e o encaminhamento para o especialista. Houve substituição dos serviços da atenção primária pelos atendimentos em unidades de pronto-atendimento. Descritores: Criança; Acesso aos Serviços de Saúde; Cuidadores; Doença Crônica; Enfermagem Pediátrica. RESUMENObjetivo: Conocer cómo ocurre el acceso de niños con necesidades especiales de salud a la red de atención primaria a la salud. Método: Investigación cualitativa, de tipo descriptiva y exploratoria, en la cual se utilizó entrevistas semiestructuradas mediadas por la elaboración de un Mapa hablante. Participaron 19 familiares que cuidan a estos niños en dos municipios brasileños. Se sometieron los datos al análisis temático inductivo. Resultados: Del diagnóstico al acompañamiento especializado, se apuntaron dificultades durante la trayectoria del niño y su familia por la búsqueda de la definición del diagnóstico médico y del acceso al profesional especializado; en la atención en la red de atención primaria a la salud, se observó un distanciami...

Health & Social Care in the Community

Understanding Care from the View of Individuals with Cerebral Palsy: Pity, Politics, and Pride

Dahl,

Dammeyer

2024

Throughout history, disability has been understood in different ways: as a curse, a biomedical condition, a societal/political problem, a minority identity, and a social and cultural construction. Disability understandings reflect society’s legislation and the character of social support for people with disability and vice versa. In this article, qualitative interviews with adults with cerebral palsy were analyzed with a focus on how care, as a fundamental need between people, might be mediated by implicit and explicit understandings of disability. The central focus lies in how historical paradigms of disability and caregiving are reflected in the lived experiences of adults with cerebral palsy. The findings were overall twofold. First, contemporary disability understandings do not substitute former understandings but coexist as superimposed practices of care. Second, new perspectives of disability and care emerged emphasizing equitable relationships, empowerment, and solidarity. It is discussed how premodern, modern, late modern, and postmodern understandings of disability shape the nature of care directed at people with disability in a Western welfare context and how practices of care can contribute to the advancement of social justice.