Religious/spiritual coping in informal caregivers of children with cleft lip and/or dysphagic palate

Farinha, Francely Tineli; Bom, Gesiane Cristina; Manso, Maila Meryellen Ferreira Garcia; Prado, Priscila Capelato; Matiole, Claudia Regina; Trettene, Armando dos Santos

doi:10.1590/0034-7167-2020-1300

Cited by 2 publications

(2 citation statements)

References 24 publications

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“…15 However, the manifestation of these problems will depend on how they will face the difficulties and coping modalities. 24 , 25 These children are submitted to primary surgeries for anatomical and esthetic correction, although the treatment extends to adulthood. 2 , 26 …”

Section: Discussionmentioning

confidence: 99%

Prenatal diagnosis of orofacial clefts: unveiling the parents’ experience

Silva

Gifalli

Capone

et al. 2023

Rev. paul. pediatr.

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Objective: To understand the experience of parents regarding prenatal diagnosis of orofacial cleft in their children. Methods: Descriptive study with a qualitative approach, carried out in a Brazilian public tertiary hospital between January and March 2019. Parents who were accompanying their children during hospitalization for primary surgeries and who had received the diagnosis of malformation during pregnancy were included in this study. Data was collected through semi-structured interviews, which were audio-recorded and transcribed in full. To prepare the results, Content Analysis was used in the Thematic modality. Results: The sample had 17 participants: 16 mothers and one father. From the speeches, three categories were unveiled: dealing with the unknown, assimilating the diagnosis, and positive and negative implications of prenatal diagnosis. Conclusions: We learned how complex and conflicting it was for parents to receive the diagnosis of malformation in their children, and that family and professional support was essential to the process of assimilation and coping. The findings point to the need for planning and implementing interventions, protocols and/or public policies aimed at assisting these parents in this period.

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Section: Discussionmentioning

confidence: 99%

Prenatal diagnosis of orofacial clefts: unveiling the parents’ experience

Silva

Gifalli

Capone

et al. 2023

Rev. paul. pediatr.

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“…It is possible that palliative care consultation may be helpful, but the impact on burden is unknown, and it is essential to develop interventions targeted to the caregiver's needs. In other disease conditions, caregivers have been shown to have unmet social and religious needs [26] ; and spirituality and religiosity have been shown to correlate with improved caregiver burden, [27,28] coping ability, [29] and even situational adjustment. [30] Interventions geared toward the well-being of caregivers for persons with advanced cirrhosis are limited.…”

Section: Psychological Interventions To Improve Caregiver Burdenmentioning

confidence: 99%

The emotional burden of caregiving for patients with cirrhosis

et al. 2022

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Caregivers for patients with cirrhosis face immense physical and psychological strain that negatively impact quality of life and ability to care for oneself.The aim is to explore the caregiver experience for patients with cirrhosis, identify prominent stressors, and understand the multidimensional contributors to caregiver burden, to help tailor effective interventions. The caregivers of 25 patients with decompensated cirrhosis underwent semistructured in-person interviews and completed written exercises targeting emotional disclosure or resilience training that were analyzed for dominant emotions and themes.Burden was quantified using the Zarit Burden Interview-12 (ZBI, range 0-48), Distress Thermometer (0-10), and Caregiver Captivity Index (0-4). Quality of life was assessed with a visual analog scale (0-100). Median ZBI was moderate (14 [10-19]), as was distress (5 [2-7]), and captivity (2 [1-4]). Quality of life was fair (80 [70-85]). Dominant emotions included anxiety, guilt, fear, frustration, captivity, and resentment. Prominent themes included lack of time for self-care, hierarchy of caregiver role, support from versus frustration with medical professionals, social support, spirituality and religion, and diseaserelated restrictions. Hepatic encephalopathy, and need to follow strict nutrition and diet recommendations, are frequent sources of disease-related caregiver burden. The health care system confers some degree of burden, especially when doubts arise regarding physician competence. Conclusion: Caregiver burden is significant. The impact of interventions to alleviate caregiver burden should be explored, so that their appreciated efforts do not have such detrimental effects on their quality of life.

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Religious/spiritual coping in informal caregivers of children with cleft lip and/or dysphagic palate

Cited by 2 publications

References 24 publications

Prenatal diagnosis of orofacial clefts: unveiling the parents’ experience

Prenatal diagnosis of orofacial clefts: unveiling the parents’ experience

The emotional burden of caregiving for patients with cirrhosis

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