Patient’s perception of the meaning of life in cystic fibrosis – its evaluation with respect to the stage of the disease and treatment

Cepuch, Grażyna; Dębska, Grażyna; Pawlik, Lidia; Mazurek, Henryk

doi:10.5604/17322693.1014657

Cited by 6 publications

(9 citation statements)

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“…as a result of long-term care, the parents/caregivers experience resignation, a sense of loneliness, loss of valuable interpersonal contacts, lack of interests, dissatisfaction with their own life situation and sometimes even negative feelings towards the child [2][3][4]. this causes stress, which leads to physical, emotional, mental, social and financial depletion [4][5][6][7]. the burden can be discussed in relation to objective and subjective aspects [5,6].…”

Section: Introductionmentioning

confidence: 99%

“…this causes stress, which leads to physical, emotional, mental, social and financial depletion [4][5][6][7]. the burden can be discussed in relation to objective and subjective aspects [5,6]. objective or measurable indicators in the caregiver's functioning include time and physical effort, chronicity and severity of symptoms, as well as sociodemographic indicators, i.e.…”

Section: Introductionmentioning

confidence: 99%

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Caregiver burden and the role of social support in the care of children with cystic fibrosis

Dębska¹,

Milaniak²,

Domańska³

et al. 2019

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Background. the effort involved in caring for a patient suffering from cystic fibrosis lies with its parents/caregiver, becoming the cause of excessive burden. In such a situation, social support is an important strategy for coping with chronic illnesses. Objectives. the aim of the study was to assess the level of burden and social support for parents of children with cF and to establish a relationship between them. Material and methods. the study involved 88 parents of patients with cystic fibrosis. the study utilized the standardized Caregiver Burden Scale (cb) and the Berlin Social Support Scale (bsss). Results. the study group experienced an average burden level, which is dependent on the level of education. the highest level of burden was found in two subscales: disappointment and general effort, and the lowest was in the emotional involvement subscale. the level of support in the studied group was high. the largest was observed in the subscale perceived support and received support, and the lowest in the subscale seeking support. analysis of the regression of the dependent variable of the caregiver's level of burden showed that the level of burden determines the need for support. It has been observed that as the level of the caregiver's burden increases, the need for support also increases. In turn, the smaller the caregiver's burden, the lower the need for support currently received. Conclusions. the caregiver burden on the parent of a children suffering from cF and the received social support are important factors influencing each other in the care of a chronically ill child. this means that the more support received, the lower the sense of burden the caregiver experiences.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Caregiver burden and the role of social support in the care of children with cystic fibrosis

Dębska¹,

Milaniak²,

Domańska³

et al. 2019

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“…A progressão da FC impõe limitações nos diferentes domínios da vida, inclusive no estabelecimento de relacionamentos, o que pode causar frustrações e baixa autoestima, podendo levar até mesmo a ideias suicidas (Cepuch et al, 2012).…”

Section: Considerações Sobre a Fibrose Cística E A Experiência De Conunclassified

“…Os estudos com adultos que possuem FC, evidenciados na literatura nacional e internacional, em sua maioria, focalizam as formas de diagnósticos da FC (SBP, 2011), os sinais e sintomas da doença (Nathan, Shteinberg, Rivlin, 2015), a fertilidade em pessoas com FC (Girault et al, 2016) e as comorbidades que surgem com o aumento na expectativa de vida (Ronan, Elborn, Plant, 2017). São apontados também os métodos de tratamento e as novas terapias para a FC (Moreno, Cáceres, Gutiérrez, 2017;Konstan et al, 2017;Milla et al, 2017), a não adesão à terapêutica e as dificuldades enfrentadas diante dela (Macdonald et al, 2016;Cepuch et al, 2012;Besier, Goldbeck, 2012).…”

Section: Considerações Sobre a Fibrose Cística E A Experiência De Conunclassified

“…Estudos evidenciam o transplante pulmonar (Afonso Junior et al, 2015), a mortalidade na fila de espera por ele (Camargo et al, 2015). As dificuldades nas relações interpessoais, com a autoimagem e o desemprego (Cepuch et al, 2012;Dębska, Cepuch, Mazurek, 2014;Besier, Goldbeck, 2012), também compõem os estudos como maior expressão na literatura.…”

Section: Considerações Sobre a Fibrose Cística E A Experiência De Conunclassified

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A experiência de adultos com fibrose cística: um estudo fenomenológico

Cordeiro¹

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Introdução: a fibrose cística é uma doença crônica, multissistêmica, autossômica recessiva, de caráter genético. A expectativa de vida de quem convive com essa doença tem aumentado com os avanços no tratamento e com o controle das infecções. Por isso, o número de pessoas que chegam à idade adulta vem crescendo, o que faz surgirem novas demandas de atenção. Objetivo: compreender a experiência de pessoas adultas que convivem com a fibrose cística. Método: trata-se de um estudo qualitativo fundamentado na fenomenologia social de Alfred Schütz, realizado com doze pessoas adultas, que possuíam fibrose cística, residentes na cidade de São Paulo. Para obtenção dos depoimentos, utilizou-se a entrevista fenomenológica, com as seguintes questões norteadoras: como é para você conviver com a fibrose cística? Considerando que você tem essa doença crônica, quais são seus planos para o futuro? A Fenomenologia Social de Alfred Schütz permitiu a organização e a análise dos resultados. A discussão do conjunto de categorias que emergiram da experiência vivida foi realizada com base na literatura temática, tendo como fio condutor o referencial teórico-metodológico adotado. O projeto foi aprovado pelo Comitê de Ética em Pesquisa com seres humanos da Escola de Enfermagem da Universidade de São Paulo, sob o Parecer nº 1.400.118. Resultados: o grupo de adultos com fibrose cística é aquele que convive com a doença e seu impacto desde a infância/adolescência, fases estas que foram representativas para eles, pois foi o momento em que os sintomas iniciaram e eles se perceberam diferentes dos colegas. As pessoas que fazem parte desse grupo social lidam com o preconceito e com o constrangimento causados pelos sinais e sintomas como a fadiga respiratória, a tosse e ainda o tratamento da doença, o que dificulta a realização das atividades cotidianas. Apesar das dificuldades de conviver com a fibrose cística, eles se mostram resilientes, otimistas e adaptam a rotina de tratamento ao seu cotidiano. No que tange ao futuro, os participantes deste estudo referem o medo da morte. No entanto referem-se ao transplante pulmonar como possibilidade de melhorar a qualidade de vida, isto é, estar livres da rotina rígida do tratamento, ter autonomia, independência, além de poder constituir família, dar continuidade aos estudos, conseguir um emprego e realizar atividades que lhes dão prazer. Conclusões: a fenomenologia social de Alfred Schütz possibilitou compreender a experiência de adultos com fibrose cística no contexto social onde estão inseridos, evidenciando elementos importantes para a elaboração de estratégias de cuidado centradas nas necessidades reais deste grupo. Essas necessidades devem ser refletidas no âmbito assistencial, do ensino e da pesquisa em saúde.

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Psychological status of mothers of children with cystic fibrosis and primary ciliary dyskinesia

Gürsoy

Eyüboğlu

Aslan

et al. 2022

Pediatric Pulmonology

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Objectives We aimed to investigate depression, burnout, attitude, and burden of caregivers of children with cystic fibrosis (CF), and especially caregivers of children with primary ciliary dyskinesia (PCD) due to limited number of studies on this topic, and to compare them according to their children's clinical status. Methods Clinical features and demographic data of children and their families were asked from caregivers in four pediatric pulmonology centers. Beck Depression Inventory, Maslach Burnout Inventory, Zarit Caregiver Burden Scale, and Parental Attitude Research Instrument were administered to caregivers in both groups. Results were compared between the two groups. Results In total, 131 children with CF and 39 with PCD and their caregivers were involved in the study. All primary caregivers were mothers in both groups. Depression, burnout, and burden scores of mothers of children with CF were significantly higher than mothers of children with PCD (p = 0.017, p = 0.024, p = 0.038, respectively). Burnout was higher in both CF and PCD groups with low family income (p = 0.022, p = 0.034). Number of hospital visits in the previous 6 months was correlated with burnout in both CF and PCD groups (r = 0.207, p = 0.034; r = 0.352, p = 0.044). Conclusions Although mothers with children with CF have higher levels of depression, burnout, burden, and negative attitudes toward children than mothers with children with PCD, these are also significantly high in mothers with children with PCD. Psychological problems of mothers of children with CF and PCD may increase with frequent hospital visits, hospitalizations, low family income, number of children, and chronic disease in another child.

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Patient’s perception of the meaning of life in cystic fibrosis – its evaluation with respect to the stage of the disease and treatment

Abstract: CF with its poor prognosis has a significant impact on patient's hierarchy of respected values and life priorities. High level of acceptance for suicidal behaviours observed in all diagnostic subgroups of patients with CF indicates a need for organized intensified psychological care.

Cited by 6 publications

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Caregiver burden and the role of social support in the care of children with cystic fibrosis

Caregiver burden and the role of social support in the care of children with cystic fibrosis

A experiência de adultos com fibrose cística: um estudo fenomenológico

Psychological status of mothers of children with cystic fibrosis and primary ciliary dyskinesia

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