Increased Congregational Support for Parents of Children with Cystic Fibrosis

Szczesniak, Rhonda; Zou, Yuanshu; Wetzel, J Denise; Krause, Neal; Grossoehme, Daniel H.

doi:10.1007/s10943-014-9928-x

Cited by 4 publications

(4 citation statements)

References 28 publications

(31 reference statements)

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“…In another study, accumulated data related to the mortality rate between genders reflects a higher mortality rate in CF females compared to males ( 6 ). Cultural issues and intrinsic ethnic differences ( 1 ), as well as religion ( 8 , 25 ) and geographical elements, ( 9 ) may be reasons for the differences. For example, females are more susceptible to CF because of their body functions; consequently, they more often report problems than males.…”

Section: Discussionmentioning

confidence: 99%

Association Between Outcomes and Demographic Factors in an Azeri Turkish Population With Cystic Fibrosis: A Cross-Sectional Study in Iran From 2001 Through 2014

Vahedi¹,

Jabarpoor-Bonyadi²,

Ghojazadeh³

et al. 2016

Iran Red Crescent Med J

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BackgroundOutcomesforcystic fibrosis patients are improving rapidly. The demographic factors are notable variables inoutcomes, which can be evaluated and modified.ObjectivesThis study was designed to investigate the association between outcome and demographic factors in patients with cystic fibrosis.Patients and MethodsThis was a cross-sectional study and data were gathered for 331 patients using the census method, from March 2001 to September 2014 in Iran. Data was analyzed using logistic regression analysis, chi-square test, and independent sample t test using SPSS 18. Odds ratio with confidence intervals of 95% and P < 0.05 were considered significant.ResultsThere were 85 (25.7%) deceased patients and 246 (74.3%) living patients at the time of the study. Of the 246 living CF patients, 202 (82.2%) were less than nine years of age, and 77 (90.6%) out of the 85 deceased CF patients had died younger than four years of age. There was a significant difference between outcome and location of residence. The risk of mortality was 50% less in urban patients than in rural patients (P = 0.03). The risk of mortality was approximately two times higher in patients with a positive family history than in those with a negative family history (P = 0.02). The proportion of mortality was approximately two times, or 94%, higher for those in a consanguineous marriage than for those in a non-consanguineous marriage (P = 0.01).ConclusionsThe results demonstrated that the mortality rate was higher in CF patients with a positive family history, a consanguineous marriage, and residence in a rural area. Therefore, demographic factors play an important role in the outcome of cystic fibrosis. Unfortunately, these parameters, which can be managed easily and with low cost, have been overlooked.

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Section: Discussionmentioning

confidence: 99%

Association Between Outcomes and Demographic Factors in an Azeri Turkish Population With Cystic Fibrosis: A Cross-Sectional Study in Iran From 2001 Through 2014

Vahedi¹,

Jabarpoor-Bonyadi²,

Ghojazadeh³

et al. 2016

Iran Red Crescent Med J

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“…The role of faith communities as sources of religious, emotional and instrumental support also has been found in some, though not all, studies of parents whose children have a chronic disease (Hexem et al, 2011; Marshall et al, 2003; Schneider & Mannell, 2006; Wilson & Miles, 2001). Szczesniak and colleagues have also documented the importance of congregational support to parents of children with cystic fibrosis, although the study did not focus on coping shortly after diagnosis, as have other studies discussed (Szczesniak, Zou, Wetzel, Krause, & Grossoehme, 2014). This suggests that chaplains may be well-suited to be mediators between the healthcare system and congregational life, from being a direct pastoral caregiver to coaching congregational clergy.…”

Section: Discussionmentioning

confidence: 99%

“A Remarkable Experience of God, Shaping Us as a Family”: Parents’ Use of Faith Following Child's Rare Disease Diagnosis

Purcell

Whisenhunt

Cheng

et al. 2015

Journal of Health Care Chaplaincy

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A child’s chronic illness can lead parents to utilize different types of coping, including religious beliefs and practices. Previous studies have generally focused on life-shortening diagnoses. The present study explored parental use of faith when the diagnosis was not life-shortening, using grounded-theory qualitative methodology. Data were collected using semi-structured telephone interviews with N=12 parents of children diagnosed with Neuroendocrine Hyperplasia of Infancy (NEHI); approximately 50% of the diagnosed population in the US at the time of the interview. Participants used faith to cope and make meaning in five ways: parents believed NEHI happened for a reason; beliefs provided resilience; parents were sustained by faith communities; beliefs affected parents’ behavior; and beliefs developed over time. The results suggest that chaplains develop means for universal screening for spiritual struggle; educating congregational clergy how to support families in which a child has a chronic illness; and assisting parents construct meaning of their experience.

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“…É importante notar que o impacto positivo da religiosidade e espiritualidade sobre a saúde está relacionado com a participação em diferentes crenças e com o cuidado, o apoio e a compreensão dados às pessoas pelas entidades e associações religiosas. Uma evidência disso é o fato de pais de crianças com fibrose cística terem relatado níveis elevados de apoio emocional de membros de instituições e congregações religiosas e utilizarem a religiosidade como estratégia de enfrentamento positiva da doença dos filhos [54].…”

Section: Espiritualidade E Religiosidade Como Forma De Enfretamento Dunclassified

Benefícios da prática da espiritualidade e religiosidade para pessoas com epilepsia

et al. 2017

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A epilepsia é considerada uma doença neurológica enigmática pela forma de manifestação de seus sinais e sintomas. É importante notar que a prática da espiritualidade/religiosidade pode impactar positivamente na qualidade de vida de pacientes com doenças neurológicas, em particular a epilepsia, sendo considerada uma forma de enfrentamento e tratamento complementar da doença. Dessa forma, o objetivo deste trabalho foi apresentar informações referentes aos possíveis benefícios da prática da espiritualidade/religiosidade como forma de tratamento alternativo de pacientes com essa condição. Esta pesquisa consistiu de ampla revisão de literatura realizada na base de dados PubMed. Para a seleção dos artigos, dentro da temática de interesse (27 no total), foram utilizados os descritores “epilepsy”, “spirituality”, “religiosity”, “quality of life” e “religion” bem como seus cruzamentos. Além disso, foram utilizados outros artigos que apontavam as definições, a classificação, os aspectos históricos e epidemiológicos e as diretrizes do manejo da epilepsia. Foi possível concluir que a prática da espiritualidade/religiosidade somada ao tratamento convencional pode ser uma alternativa a ser recomendada pelos profissionais da saúde, pois impacta positivamente na qualidade de vida de pacientes com epilepsia.

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Increased Congregational Support for Parents of Children with Cystic Fibrosis

Cited by 4 publications

References 28 publications

Association Between Outcomes and Demographic Factors in an Azeri Turkish Population With Cystic Fibrosis: A Cross-Sectional Study in Iran From 2001 Through 2014

Association Between Outcomes and Demographic Factors in an Azeri Turkish Population With Cystic Fibrosis: A Cross-Sectional Study in Iran From 2001 Through 2014

“A Remarkable Experience of God, Shaping Us as a Family”: Parents’ Use of Faith Following Child's Rare Disease Diagnosis

Benefícios da prática da espiritualidade e religiosidade para pessoas com epilepsia

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