Parental Stress and Social Support of Caregivers of Children With Cerebral Palsy

Lima, Mayara Barbosa Sindeaux; Cardoso, Vagner dos Santos; Silva, Simone Souza da Costa

doi:10.1590/1982-43272664201608

Cited by 31 publications

(31 citation statements)

References 19 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Several studies have highlighted the importance of social support in caregiving. (5,12) A community that does not understand the needs of a child with disabilities, and a community which looks down upon such children greatly worsens the stress levels among caregivers. The mothers in our study felt discriminated against.…”

Section: Discussionmentioning

confidence: 99%

Burden of caregivers of children with cerebral palsy: an intersectional analysis of gender, poverty, stigma, and public policy.

Vadivelan¹,

Sekar

Sru³

et al. 2020

Preprint

View full text Add to dashboard Cite

Background: Caregivers of children with cerebral palsy suffer from substantial psycho-social burden.However, there is scarcity of documentation of the various sources of burden in the low-and middleincome settings. Methods:We conducted qualitative in-depth interviews among mothers of children with cerebral palsy attending a physiotherapy facility. We purposively sampled mothers from rural and peri-urban areas in Tamil Nadu, India, till the point of data saturation. We analysed the transcripts using the socio-ecological model to identify major dimensions of psycho-social burden among these mothers. Results:At the individual level the mothers perceived aches and pains due to the heavy physical activity of caregiving. They also suffered from a feeling of guilt about the child's condition. Due to difficulty in balancing family and work, they had significant financial burdens. They also perceived a lack of knowledge and awareness about possible options for treatment of their child. At the interpersonal level, the mothers lacked support from their husband and family in the process of caregiving. They also had to suffer the ill effects of alcoholism and domestic violence from the husbands. They had to compromise on the care they provided to the other family members and their children without cerebral palsy. At the community level the mothers had no support from the community members and felt isolated from others. The mothers also reported discrimination and lack of participation in social events. Environmental stressors like lack of inclusive public spaces, lack of options for public transport and unfriendly work timings and environment were a major source of burden. The mothers felt that the disability welfare support offered by the government was grossly insufficient and there was no platform for interactions with other peers and mothers suffering from similar burden. Conclusion:Caregivers of children with cerebral palsy have unique burdens in a typical low-and middle-income setting including an intersection of gender norms, poverty, stigmatization and noninclusive public policy, which need to be addressed to improve the quality of life of caregivers. BackgroundCerebral palsy (CP) is one of the commonest causes of childhood disability in India. The condition is

show abstract

Section: Discussionmentioning

confidence: 99%

Burden of caregivers of children with cerebral palsy: an intersectional analysis of gender, poverty, stigma, and public policy.

Vadivelan¹,

Sekar

Sru³

et al. 2020

Preprint

View full text Add to dashboard Cite

show abstract

“…Hal ini ditandai dengan sulit untuk berpikir jernih (27%), sulit untuk mengambil keputusan (35,1%), tidak mampu melakukan hal-hal yang bermanfaat dalam hidup (13,5%). Sumber stres utama meliputi distres dalam hal pengasuhan, keterbatasan anak, dan keterbatasan interaksi orangtua-anak berdasarkan parenting stres index(PSI) (Lima, Cardoso, & Silva, 2016).…”

Section: Nounclassified

The Mental Health Problems of Caregivers of Children with Cerebral Palsy at Self Help Group

Wuryaningsih¹

2018

NLJ

View full text Add to dashboard Cite

ABSTRAKAnak dengan cerebral palsy memiliki ketergantungan yang tinggi dalam pemenuhan perawatan sehari-harinya untuk waktu yang lama. Kondisi ini berdampak pada beban keluarga sebagai caregiver utamanya. Penelitian ini untuk mengkaji masalah kesehatan jiwa pada caregiver dengan anak cerebral palsy yang tergabung di komunitas keluarga cerebral palsy (KCP) Mojokerto Jawa Timur. Rancangan penelitian adalah deskriptif dengan menggunakan metode survei. Sampel penelitian ini yaitu keluarga dengan anak cerebral palsy. Analisis data menggunakan deskripsi frekuaensi. Teknik sampling yang digunakan adalah total sampling sebanyak 37 responden. Instrumen penelitian menggunakan self reporting questionaire-20 (SRQ-20) dengan nilai cronbach alfa 0,84. SRQ-20 juga tersedia di aplikasi online kementerian kesehatan RI. Penelitian ini menunjukkan peran caregiver paling besar adalah ibu (94,6%). Sebesar 40,5% caregiver memiliki risiko masalah kesehatan jiwa yang memerlukan konseling oleh tenaga kesehatan profesiona (skor SRQ >=6). Caregiver mengalami beberapa keluhan baik fisik, psikis, maupun sosial. Keluhan fisik yang dirasakan antara lain sering menderita sakit kepala (40,5%), sulit tidur (45,9%), pencernaan terganggu (29,7), mudah lelah (37,8%), dan rasa tidak enak di perut (40,5%). Sedangkan keluhan psikis yang dialami caregiver rata-rata merasa tegang, cemas atau khawatir (37,8%), sulit untuk mengambil keputusan (35,1%), dan merasa sulit unntuk menikmati kegiatan sehari-hari (24,3%). Ada 2 caregiver yang memiliki ide bunuh diri. Caregiver dengan anak cerebral palsy merupakan kelompok risiko orang dengan masalah kejiwaan (ODMK) karena perannya dalam memenuhi perawatan hidup sehari-hari anak dalam waktu yang lama bahkan seumur hidup. ABSTRACTChildren with cerebral palsy (CP) have a high dependency on the activities of daily life (ADL) for a whole life. This can affect mental health and well-being of caregivers of CP. This study aimed to assess the mental health problems in caregiver of a child with CP who joined in self-help group (SHG) at Mojokerto East Java Province, focusing on depression symptoms. Using total sampling approach, the family member who has a role as caregivers of a child with CP were chosen and enrolled in a descriptive study, counted 37 respondents. The self-reporting with Cronbach alpha value 0.84 was used to measure their mental health status. SRQ-20 is also available in the Indonesia Ministry of Health's online applica-

show abstract

“…Já no estudo de Vieira, realizado em Florianópolis, o apoio afetivo e a interação positiva tiveram associação com a duração mais prolongada do aleitamento materno. 11,12 O apoio social vem sendo estudado como fator relacionado a outros desfechos em saúde [13][14][15][16][17] e tem escala validada para a população brasileira. 18 No entanto, são poucos os estudos que utilizaram essa escala com o intuito de avaliar sua associação com práticas alimentares na infância.…”

Section: Introductionunclassified

Dimensões Do Apoio Social E Prática De Aleitamento Materno: Estudo Pró-Saúde

Bertoldo¹,

Boccolini

Faerstein

2019

DEMETRA

View full text Add to dashboard Cite

Objetivo: Estimar associação entre o apoio social e suas dimensões e a prevalência do aleitamento materno (AM) nos dois primeiros anos de vida. Métodos: Estudo seccional com mulheres (n=1.634) participantes da fase 1 (1999) do Estudo Pró-Saúde, com informações coletadas por meio de questionário autopreenchível. A duração do AM foi autorrelatada em meses e, posteriormente, as prevalências foram avaliadas aos 6, 9, 12 e 24 meses. O apoio social foi avaliado em três dimensões: interação social positiva/afetiva, apoio de informação/emocional e apoio material. Foram estimadas razões de chances com intervalo de 95% de confiança via regressão logística, ajustadas por características maternas, e tendo por desfecho a prevalência de aleitamento materno em meses. Resultados: A prevalência de aleitamento materno aos 6, 9, 12 e 24 meses foi respectivamente, de 58,0%, 31,9%, 23,5% e 9,7%. A dimensão interação social positiva/afetiva foi a mais importante para o aleitamento materno aos seis meses (OR=1,52 IC95%=1,03-2,25) e também para o aleitamento materno aos 24 meses (OR=2,38 IC95%=1,03-5,49). Conclusão: O apoio social é um importante aspecto a ser considerado para dar suporte à mãe que amamenta, principalmente nos primeiros meses de vida da criança.DOI: 10.12957/demetra.2019.43037

show abstract

Parental Stress and Social Support of Caregivers of Children With Cerebral Palsy

Cited by 31 publications

References 19 publications

Burden of caregivers of children with cerebral palsy: an intersectional analysis of gender, poverty, stigma, and public policy.

Burden of caregivers of children with cerebral palsy: an intersectional analysis of gender, poverty, stigma, and public policy.

The Mental Health Problems of Caregivers of Children with Cerebral Palsy at Self Help Group

Dimensões Do Apoio Social E Prática De Aleitamento Materno: Estudo Pró-Saúde

Contact Info

Product

Resources

About