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Spirituality, a Path to Peace: The Experiences of Parents Who Have Children with Phenylketonuria

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Abstract

Having a child with phenylketonuria is extremely stressful for the parents. These parents always look for solutions for negative effects of their child’s disease. Parents’ strategies are affected by various background factors and vary according to parents’ culture, religion, education, etc. The present study was aimed at assessing the effect of spirituality on the life of parents with a PKU child, and the effect of child disease on the parents’ spirituality. The study was conducted in Kerman, Iran, in 2018; 21 participants (14 mothers, 6 fathers with PKU children, and one nurse) were selected using purposive sampling. A semi-structured in-depth interview was conducted with the selected participants. The transcribed interviews were analyzed using conventional qualitative content analysis. One main theme and two categories emerged from the analyzed data. The main theme of the supportive role of spirituality consists of two categories: spiritual growth and grabbing to the string of spirituality. The first levels of spiritual growth include Modeling and considering Imams’ lives, the increase in trust in God, the increase in mental and spiritual tolerance, and being close to God. The levels of Achieving spirituality include the remembrance of God, Thanking God, and giving donations. According to the results of this study, providing spiritual care by the nurses for the patient and their family is important. Nurses should pay attention to this subject because the patients and their family can achieve more relaxation and increased tolerance and higher satisfaction.

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Authors and Affiliations

  1. Nursing Research Center, Razi Faculty of Nursing and Midwifery, Kerman University of Medical Sciences, Haft Bagh Alavi Highway, Kerman, Iran

    Monirsadat Nematollahi, Roghayeh Mehdipour-Rabori & Behnaz Bagheryan

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  1. Monirsadat Nematollahi
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  2. Roghayeh Mehdipour-Rabori
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  3. Behnaz Bagheryan
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Correspondence to Roghayeh Mehdipour-Rabori.

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The authors declare that they have no conflict of interest.

Ethical Approval

Ethical considerations were conducted before the beginning of the study; all participants completed written informed consent forms and were assured that their information would remain confidential. This study was approved by the ethical committee of Kerman University of Medical Sciences (IR.KMU.REC.1397.326). Study purposes, the confidentiality of data, and recording of interviews clarified to the participants before interviews, and their verbal agreements were obtained.

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Informed consent was obtained from all individual participants included in the study.

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Roghayeh Medipour-Rabori has a Ph.D in nursing. She works in Kerman University of Medical Sciences. She has worked on Phenylketonuria.

Stress and quality of life in parents of children with phenylketonuria was written by her and her coworker.

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Nematollahi, M., Mehdipour-Rabori, R. & Bagheryan, B. Spirituality, a Path to Peace: The Experiences of Parents Who Have Children with Phenylketonuria. J Relig Health 60, 374–388 (2021). https://doi.org/10.1007/s10943-019-00903-w

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