Cerebral Palsy: Parental Stress of Caregivers

Lima, Mayara Barbosa Sindeaux; Ramos, Édson Marcos Leal Soares; Pontes, Fernando Augusto Ramos; Silva, Simone Souza da Costa

doi:10.1590/1413-82712021260213

Cited by 5 publications

(5 citation statements)

References 18 publications

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“…Proportion of parents experiencing high levels of stress (76.5%) in this study is much higher than what was noted by Lima et al from Brazil analyzing parental stress of caregivers with CP children as 46.2%. 13 A study from Malaysia reported that 59% of mothers of CP children were having higher levels of psychological stress. 11 A study from Sri Lanka found tat 56% of caregivers of CP children had psychological disorders.…”

Section: Discussionmentioning

confidence: 99%

Stress level in parents of children with cerebral palsy.

Saneeda Bibi,

Muhammad Ashfaq,

Jawed Akbar Dars

et al. 2024

TPMJ

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Objective: To evaluate the stress level in parents of children with cerebral palsy (CP) using parental stress scale (PSS). Study Design: Cross Sectional study. Setting: Department of Pediatric Medicine, National Institute of Child Health (NICH), Karachi, Pakistan. Period: July 2023 to December 2024. Methods: Parents of CP children of both gender and aged 1-12 years vising outpatient department were analyzed. Demographic and clinical information of the CP children and their parents were noted. Parental stress level was evaluated using PSS. The scale's total possible scores range from 18 to 90, and a score of 51 or above was considered the cut-off value for parents experiencing psychological stress. Results: In a total of 149 children, 81 (54.4%) were female. The mean age and weight of the children were 3.92±1.70 years. The mean parental stress scale score was 57.14±9.97 (ranging between 30-80). There were 114 (76.5%) parents who were having high stress levels. Higher Gross Motor Function Classification System (GMFCH) grade (p=0.013), relation of parents as father (p=0.006), and relatively higher socio-economic status (p=0.005) were significantly associated with high levels of stress. Bivariate analysis revealed positive significant correlation of GMFCH grade with PSS scores (r=0.232, p=0.004). Conclusion: Very high prevalence of elevated stress levels (76.5%) was reported among parents of CP children. Factors such as GMFCS grade, parental role, and socioeconomic status contributed to high stress.

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Section: Discussionmentioning

confidence: 99%

Stress level in parents of children with cerebral palsy.

Saneeda Bibi,

Muhammad Ashfaq,

Jawed Akbar Dars

et al. 2024

TPMJ

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“…Regarding "Class 2: Feelings in relation to participation in groups and associations", the speeches refer to the importance of support networks, which consists of the peculiar relationships that are established, based on trust, sharing and acceptance. This reality is relevant, especially when you consider that there is greater stress on the part of the caregiver, while there is a low level of social support experienced during the care process (21) .…”

Section: Discussionmentioning

confidence: 99%

Informal caregivers of children with cerebral palsy ways of coping with the uncertainty of illness

Carvalho,

França,

Sousa

et al. 2023

Rev. esc. enferm. USP

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Objective: To unveil the process of collective construction of interventions for coping by informal caregivers of children with cerebral palsy using the Theory of Uncertainty in Illness. Method: Qualitative action-research in a hybrid format with informal caregivers of children with cerebral palsy registered with the Raros group in Petrolina, Pernambuco. The research followed the planned intervention cycle, going through four phases. The analysis was carried out using the IRAMUTEQ software and content analysis. Results: Interventions were designed collectively, both virtually and in person, which resulted in improvements for informal caregivers in coping with the conditions associated with the disability, promotion of self-care, empowerment and the construction of a sense of belonging to the group. There were 12 participants, all of whom were mothers. Conclusion: There was a facilitation of the process of coping with uncertainty in the disease on the part of the informal caregiver of children with cerebral palsy and it was evidenced that for this a prismatic perspective is necessary, which understands that the uncertainties are not only related to the conditions associated with cerebral palsy, but involve subjective aspects of the caregivers.

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“…Acerca da "Classe 2: Sentimentos em relação à participação de grupos e associações", as falas remontam a importância de redes de apoio consiste nas peculiares relações que se estabelecem, regadas de confiança, partilha e acolhimento. Essa realidade é relevante, especialmente quando se considera que há um maior estresse por parte do cuidador, ao passo que se percebe um baixo suporte social experimentado na trajetória do cuidado (21) .…”

Section: Discussionunclassified

Enfrentamento da incerteza na doença pelo cuidador informal de crianças com paralisia cerebral

Carvalho,

França,

Sousa

et al. 2023

Rev. esc. enferm. USP

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RESUMO Objetivo: Desvelar o processo de construção coletiva de intervenções para o enfrentamento pelo cuidador informal de crianças com paralisia cerebral, à luz da Teoria da Incerteza na Doença. Método: Pesquisa-ação, de abordagem qualitativa, no formato híbrido, com os cuidadores informais de crianças com paralisia cerebral cadastrados no grupo Raros em Petrolina, Pernambuco. A pesquisa seguiu o ciclo de intervenção planejada, percorrendo quatro fases. A análise contou com o auxílio do software IRAMUTEQ e da análise de conteúdo. Resultados: Coletivamente foram concebidas intervenções, na modalidade virtual e presencial, que resultaram para os cuidadores informais em melhorias do enfrentamento às condições associadas à deficiência, promoção do autocuidado, empoderamento e construção de significado de pertença ao grupo. Houve 12 participantes, sendo todas elas mães. Conclusão: Houve uma facilitação do processo de enfrentamento de incerteza na doença por parte do cuidador informal de crianças com paralisia cerebral e evidenciou-se que para isso é necessária uma ótica prismática, que compreenda que as incertezas não são relacionadas apenas às condições associadas à paralisia cerebral, mas envolvem aspectos subjetivos dos cuidadores.

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Cerebral Palsy: Parental Stress of Caregivers

Cited by 5 publications

References 18 publications

Stress level in parents of children with cerebral palsy.

Stress level in parents of children with cerebral palsy.

Informal caregivers of children with cerebral palsy ways of coping with the uncertainty of illness

Enfrentamento da incerteza na doença pelo cuidador informal de crianças com paralisia cerebral

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