Estratégias de enfrentamento e o sofrimento de mães de filhos com paralisia cerebral.

Nascimento, Angélica Oliveira; Faro, André

doi:10.22199/s07187475.2015.0003.00001

Cited by 6 publications

(1 citation statement)

References 22 publications

(37 reference statements)

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“…During their process of adaptation to the illness, parents try to preserve the perception of their sense of competence as a parental caregiver in managing parental stress and the constant efforts towards improving their quality of life [ 32 ]. For these reasons, they implement coping strategies that can be cognitive [ 43 , 66 ], emotional [ 67 , 68 ], behavioural [ 36 , 67 ], relational [ 34 , 57 ] and spiritual [ 35 ]. The results of the present study are congruent with the research of Smith et al, who highlight the main needs of parents at the level of their hope, specifically: organizing basic needs, connecting with other people, prioritizing self-care, obtaining meaningful information, living one day at a time, participating in care and decisions, expressing positivity, and celebrating small achievements [ 67 ].…”

Section: Discussionmentioning

confidence: 99%

“The Key Is to Value Every Little Achievement”: A Qualitative Study of the Psychological Experience of Parent Caregivers in Paediatric Palliative Care

Nogueira

Ribeiro

2023

Clinics and Practice

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In Europe, Portugal has been identified as the country with the most rapid evolution of paediatric palliative care provision, which is a highly complex experience for families. The present descriptive–exploratory study seeks to contribute to the understanding of the psychological experience of life-limiting conditions in parent caregivers. A total of 14 families completed a sociodemographic and clinical data sheet and answered a structured online interview based on an incomplete narrative resulting from the Unwanted Guest Metaphor. A thematic analysis of the various narratives was performed through an inductive–deductive process. The results provide a holistic view of 10 essential dimensions in the parental psychological experience and contribute to the design of intervention methodologies in an eco-systemic approach. The importance of clear communication with health professionals, an awareness of the unpredictability of the disease, the desire for more self-care, the difficulty in understanding their children’s needs and the threat implicit in everyday life are some of the main findings. This research emphasizes the importance of having opportunities of emotional expression and psychoeducation about anxiety’ management, enhancing the perception of positive characteristics in children with palliative needs and creating time for the couple. The study has some limitations, such as the small sample size, and suggests that further research should explore the father’s experience.

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Section: Discussionmentioning

confidence: 99%

“The Key Is to Value Every Little Achievement”: A Qualitative Study of the Psychological Experience of Parent Caregivers in Paediatric Palliative Care

Nogueira

Ribeiro

2023

Clinics and Practice

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Exploring spiritual/religious coping strategies among mothers of children with severe or profound intellectual disability during genetic counseling in Brazil

Rodrigues,

de Carvalho,

Campos

et al. 2023

Journal of Genetic Counseling

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Parents use several coping strategies to deal with the challenges of caring for children with disabilities. This qualitative study explored the spiritual/religious coping strategies adopted by Brazilian mothers of children with severe or profound intellectual disabilities who were attending the medical genetics clinic for genetic counseling. Individual semi‐structured interviews were conducted with 15 participants, selected by convenience. Thematic content analysis was used to investigate the data. Five major themes were recognized: (1) spirituality/religion as a source of resilience; (2) surrender to God's plan; (3) a feeling of predestination; (4) children with a disability perceived/conceived as a blessing; and (5) pleading for divine intervention. Participants highlighted the ability to recover and adapt to bad circumstances and stressful events with God's support using spiritual/religious resources and practices. They attributed the cause and control of events in their lives to an external and transcendental source, showing themselves to be resigned to the condition of their child with a disability and his/her demands. The feeling of predestination appeared as a form of divine intervention as well as a way of attributing meaning to the situation. Their child with a disability was compared constantly to an “angel,” a celestial being created by God to be a messenger and fulfill divine purposes. From the participants' perspective, these coping mechanisms appeared to have helped them adjust to the situation. Spirituality and religiousness have become crucial in cultures such as Brazil, where religious practices, often highly syncretic, are common. A more detailed and comprehensive understanding of how spiritual/religious coping strategies are mobilized during the genetic counseling process can improve the cultural competence of genetic counselors and help guide proposals for more effective clinical interventions.

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Pais de Crianças com Paralisia Cerebral Pouco Estressados1

Cunha

Pontes

Silva

2017

Rev. bras. educ. espec.

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RESUMO: a presente pesquisa objetivou identificar, com base na Bioecologia do Desenvolvimento de Bronfenbrenner, fatores de proteção e de risco nas falas de pais de crianças com paralisia cerebral considerados pouco estressados. Inicialmente, 101 pais responderam aos questionários sociodemográficos, de limitação funcional da criança e de estresse parental. Posteriormente, um grupo focal foi realizado com sete pais. Verificou-se maior frequência de relatos protetivos, principalmente relacionados à pessoa, entretanto também se observou relatos sobre o contexto e o tempo. Finalmente, verificou-se que os pais utilizaram mecanismos protetivos eficientes, que podem justificar o baixo nível de estresse encontrado. PALAVRAS-CHAVE:Educação Especial. Estresse. Paralisia Cerebral. ABSTRACT:This research aimed to identify, based on the Bioecology Bronfenbrenner Development, protective and risk factors in the statements of parents of children with cerebral palsy considered little stressed. Initially, 101 parents responded to the sociodemographic questionnaire, to the functional limitation of the child and parental stress. Following, a focus group was conducted with seven parents. A higher frequency of protective reports, mainly related to the person were verified, but also reports about the context and time were observed. Finally, it was found that parents used efficient protective mechanisms which may explain the low level of stress.KEYWORDS: Special Education. Stress. Cerebral Palsy. introduçãoEmbora tradicionalmente a psicologia do desenvolvimento tenha se concentrado no estudo do indivíduo com desenvolvimento típico (FREITAS; SILVA; PONTES, 2012), nos últimos anos tem sido evidente o aumento de pesquisas que tratam não somente da pessoa com deficiência, mas também de suas famílias. Esta preocupação se justifica uma vez que este contexto tem sido considerado como sendo primordial ao desenvolvimento humano (BRONFENBRENNER; MORRIS, 1998).Os estudos com famílias destacam a importância do subsistema parental no contexto familiar, porque são os pais que executam as funções primordiais na geração de conquistas ao longo do tempo pela pessoa desenvolvente. Neste sentido, as evidências empíricas revelam que a competência parental e as habilidades reveladas pelos pais no cotidiano estão associadas a vários fatores como: as características do contexto, da personalidade da figura parental e da criança com a qual eles se relacionam (MACARINI et al., 2010) 1 http://dx

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Estratégias de enfrentamento e o sofrimento de mães de filhos com paralisia cerebral.

Cited by 6 publications

References 22 publications

“The Key Is to Value Every Little Achievement”: A Qualitative Study of the Psychological Experience of Parent Caregivers in Paediatric Palliative Care

“The Key Is to Value Every Little Achievement”: A Qualitative Study of the Psychological Experience of Parent Caregivers in Paediatric Palliative Care

Exploring spiritual/religious coping strategies among mothers of children with severe or profound intellectual disability during genetic counseling in Brazil

Pais de Crianças com Paralisia Cerebral Pouco Estressados1

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