Skip to main content
Top
Published in: Journal of Religion and Health 1/2021

01-02-2021 | Phenylketonuria | Original Paper

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

Authors: Monirsadat Nematollahi, Roghayeh Mehdipour-Rabori, Behnaz Bagheryan

Published in: Journal of Religion and Health | Issue 1/2021

Login to get access

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.
Literature
go back to reference Ashley, P. (2007). Toward an understanding and definition of wilderness spirituality. Australian Geographer, 38(1), 53–69. Ashley, P. (2007). Toward an understanding and definition of wilderness spirituality. Australian Geographer, 38(1), 53–69.
go back to reference Askay, S. W., & Magyar-Russell, G. (2009). Post-traumatic growth and spirituality in burn recovery. International Review of Psychiatry, 21(6), 570–579. Askay, S. W., & Magyar-Russell, G. (2009). Post-traumatic growth and spirituality in burn recovery. International Review of Psychiatry, 21(6), 570–579.
go back to reference Barton, B., Smit, E., Frain, J., & Loggins, C. (2010). Advance center in underserved populations. Seminars in Oncology Nursing, 26(3), 157–167. Barton, B., Smit, E., Frain, J., & Loggins, C. (2010). Advance center in underserved populations. Seminars in Oncology Nursing, 26(3), 157–167.
go back to reference Bremer, A., Dahlberg, K., & Sandman, L. (2009). To survive out-of-hospital cardiac arrest: A search for meaning and coherence. Qualitative Health Research, 19(3), 323–338.PubMed Bremer, A., Dahlberg, K., & Sandman, L. (2009). To survive out-of-hospital cardiac arrest: A search for meaning and coherence. Qualitative Health Research, 19(3), 323–338.PubMed
go back to reference Courts, N. F., Newton, A. N., & McNeal, L. J. (2005). Husbands and wives living with multiple sclerosis. Journal of Neuroscience Nursing, 37(1), 20–27. Courts, N. F., Newton, A. N., & McNeal, L. J. (2005). Husbands and wives living with multiple sclerosis. Journal of Neuroscience Nursing, 37(1), 20–27.
go back to reference D’Aloia, T. (2017). What is it like to survive near-death? An interpretative phenomenological study of the experience of surviving sudden cardiac arrest. Middlesex University. D’Aloia, T. (2017). What is it like to survive near-death? An interpretative phenomenological study of the experience of surviving sudden cardiac arrest. Middlesex University.
go back to reference Delgado, C. (2007). Sense of coherence, spirituality, stress and quality of life in chronic illness. Journal of Nursing Scholarship, 39(3), 229–234.PubMed Delgado, C. (2007). Sense of coherence, spirituality, stress and quality of life in chronic illness. Journal of Nursing Scholarship, 39(3), 229–234.PubMed
go back to reference Elo, S., Kääriäinen, M., Kanste, O., Pölkki, T., Utriainen, K., & Kyngäs, H. (2014). Qualitative content analysis. SAGE Open, 4(1), 2158244014522633. Elo, S., Kääriäinen, M., Kanste, O., Pölkki, T., Utriainen, K., & Kyngäs, H. (2014). Qualitative content analysis. SAGE Open, 4(1), 2158244014522633.
go back to reference Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X.-H., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism, 13(4), 375–387.PubMed Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X.-H., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism, 13(4), 375–387.PubMed
go back to reference Fidika, A., Salewski, C., & Goldbeck, L. (2013). Quality of life among parents of children with phenylketonuria (PKU). Health and Quality of Life Outcomes, 11(1), 54.PubMedPubMedCentral Fidika, A., Salewski, C., & Goldbeck, L. (2013). Quality of life among parents of children with phenylketonuria (PKU). Health and Quality of Life Outcomes, 11(1), 54.PubMedPubMedCentral
go back to reference Giovannini, M., Verduci, E., Salvatici, E., Paci, S., & Riva, E. (2012). Phenylketonuria: Nutritional advances and challenges. Nutrition & Metabolism, 9(1), 1. Giovannini, M., Verduci, E., Salvatici, E., Paci, S., & Riva, E. (2012). Phenylketonuria: Nutritional advances and challenges. Nutrition & Metabolism, 9(1), 1.
go back to reference Graneheim, U. H., & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24(2), 105–112.PubMed Graneheim, U. H., & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24(2), 105–112.PubMed
go back to reference Gunduz, M., Arslan, N., Unal, O., Cakar, S., Kuyum, P., & Bulbul, S. F. (2015). Depression and anxiety among parents of phenylketonuria children. Neurosciences, 20(4), 350.PubMedPubMedCentral Gunduz, M., Arslan, N., Unal, O., Cakar, S., Kuyum, P., & Bulbul, S. F. (2015). Depression and anxiety among parents of phenylketonuria children. Neurosciences, 20(4), 350.PubMedPubMedCentral
go back to reference Harandy, T. F., Ghofranipour, F., Montazeri, A., Anoosheh, M., Bazargan, M., Mohammadi, E., et al. (2009). Muslim breast cancer survivor spirituality: coping strategy or health seeking behavior hindrance? Health Care for Women International, 31(1), 88–98. Harandy, T. F., Ghofranipour, F., Montazeri, A., Anoosheh, M., Bazargan, M., Mohammadi, E., et al. (2009). Muslim breast cancer survivor spirituality: coping strategy or health seeking behavior hindrance? Health Care for Women International, 31(1), 88–98.
go back to reference Hart, S., Hoyt, M., Diefenbach, M., Anderson, D., Kilbourn, K., & Craft, L. (2012). Meta-analysis of efficacy of interventions for elevated depressive symptoms in adults diagnosed with cancer. Journal of the National Cancer Institute, 104(13), 990–1004.PubMedPubMedCentral Hart, S., Hoyt, M., Diefenbach, M., Anderson, D., Kilbourn, K., & Craft, L. (2012). Meta-analysis of efficacy of interventions for elevated depressive symptoms in adults diagnosed with cancer. Journal of the National Cancer Institute, 104(13), 990–1004.PubMedPubMedCentral
go back to reference Irannejad, F., Dehghan, M., & Mehdipour Rabori, R. (2018). Stress and quality of life in parents of children with phenylketonuria. Journal of Child and Adolescent Psychiatric Nursing, 31(2–3), 48–52.PubMed Irannejad, F., Dehghan, M., & Mehdipour Rabori, R. (2018). Stress and quality of life in parents of children with phenylketonuria. Journal of Child and Adolescent Psychiatric Nursing, 31(2–3), 48–52.PubMed
go back to reference Jim, H. S., Pustejovsky, J. E., Park, C. L., Danhauer, S. C., Sherman, A. C., Fitchett, G., et al. (2015). Religion, spirituality, and physical health in cancer patients: A meta-analysis. Cancer, 121(21), 3760–3768.PubMedPubMedCentral Jim, H. S., Pustejovsky, J. E., Park, C. L., Danhauer, S. C., Sherman, A. C., Fitchett, G., et al. (2015). Religion, spirituality, and physical health in cancer patients: A meta-analysis. Cancer, 121(21), 3760–3768.PubMedPubMedCentral
go back to reference Joulaee, A., Joolaee, S., Kadivar, M., & Hajibabaee, F. (2012). Living with breast cancer: Iranian women’s lived experiences. International Nursing Review, 59(3), 362–368.PubMed Joulaee, A., Joolaee, S., Kadivar, M., & Hajibabaee, F. (2012). Living with breast cancer: Iranian women’s lived experiences. International Nursing Review, 59(3), 362–368.PubMed
go back to reference Khayatzadeh, M. (2009). A comparative study about quality of life in mothers of children with cerebral palsy, mental retardation and mothers of normal children. Khayatzadeh, M. (2009). A comparative study about quality of life in mothers of children with cerebral palsy, mental retardation and mothers of normal children.
go back to reference Lee, M., Park, S., Lee, E., Ro, J., Kang, H., & Shin, K. (2011). Social support and depressive mood 1 year after diagnosis of breast cancer compared with the general female population: a prospective cohort study. Supportive Care in Cancer, 19, 1379–1392.PubMed Lee, M., Park, S., Lee, E., Ro, J., Kang, H., & Shin, K. (2011). Social support and depressive mood 1 year after diagnosis of breast cancer compared with the general female population: a prospective cohort study. Supportive Care in Cancer, 19, 1379–1392.PubMed
go back to reference Mashayekhi Dolatabadi, M., & Mohammadi, M. (2014). Resilience and spiritual intelligence predictors of as academic self-efficacy in urban and rural students. Journal of school psychology, 3(2), 205–225. Mashayekhi Dolatabadi, M., & Mohammadi, M. (2014). Resilience and spiritual intelligence predictors of as academic self-efficacy in urban and rural students. Journal of school psychology, 3(2), 205–225.
go back to reference Mayya, S., & Roff, R. (2013). Students perceptions educational environment: A comparison of a academic achievement and under achievers at kasturba medical college, India. 1du – Health (Abingdon), 4(87), 012–057. Mayya, S., & Roff, R. (2013). Students perceptions educational environment: A comparison of a academic achievement and under achievers at kasturba medical college, India. 1du – Health (Abingdon), 4(87), 012–057.
go back to reference Medford, E., Hare, D. J., Carpenter, K., Rust, S., Jones, S., & Wittkowski, A. (2017). Treatment adherence and psychological wellbeing in maternal carers of children with Phenylketonuria (PKU). JIMD Reports, 37, 107–114.PubMedPubMedCentral Medford, E., Hare, D. J., Carpenter, K., Rust, S., Jones, S., & Wittkowski, A. (2017). Treatment adherence and psychological wellbeing in maternal carers of children with Phenylketonuria (PKU). JIMD Reports, 37, 107–114.PubMedPubMedCentral
go back to reference Mehdipour-Rabori, R., & Nematollahi, M. (2014). The effect of recommended Azkar on anxiety, stress, and depression in families of patients undergoing open heart surgery. Iranian Journal of Nursing and Midwifery Research, 19(3), 238.PubMedPubMedCentral Mehdipour-Rabori, R., & Nematollahi, M. (2014). The effect of recommended Azkar on anxiety, stress, and depression in families of patients undergoing open heart surgery. Iranian Journal of Nursing and Midwifery Research, 19(3), 238.PubMedPubMedCentral
go back to reference Mehrabi, E., Hajian, S., Simbar, M., Houshyari, M., & Zayeri, F. (2015). Post-traumatic growth: a qualitative analysis of experiences regarding positive psychological changes among Iranian women with breast cancer. Electronic Physician, 7(5), 1239–1246.PubMedPubMedCentral Mehrabi, E., Hajian, S., Simbar, M., Houshyari, M., & Zayeri, F. (2015). Post-traumatic growth: a qualitative analysis of experiences regarding positive psychological changes among Iranian women with breast cancer. Electronic Physician, 7(5), 1239–1246.PubMedPubMedCentral
go back to reference Mirzaei, T., Nematollahi, M., Sabzevari, S., Dehghan, S., & Soleymanpour, M. J. (2015). Short term effects of Islamic Zikr on anxiety, stress, and depression in mothers of children with congenital heart disease. British Journal of Medicine and Medical Research, 10(4), 1–5. Mirzaei, T., Nematollahi, M., Sabzevari, S., Dehghan, S., & Soleymanpour, M. J. (2015). Short term effects of Islamic Zikr on anxiety, stress, and depression in mothers of children with congenital heart disease. British Journal of Medicine and Medical Research, 10(4), 1–5.
go back to reference Mok, E., Wong, F., & Wong, D. (2010). The meaning of spirituality and spiritual care among the Hong Kong Chinese terminally ill. Journal of Advanced Nursing, 66(2), 360–370.PubMed Mok, E., Wong, F., & Wong, D. (2010). The meaning of spirituality and spiritual care among the Hong Kong Chinese terminally ill. Journal of Advanced Nursing, 66(2), 360–370.PubMed
go back to reference Moody, R. A. (2001). Life after life. Rider. Moody, R. A. (2001). Life after life. Rider.
go back to reference Myerson, D., Grant, K., Carter, J., & Kilmer, R. (2011). Posttraumatic growth among children and adolescents: A systematic review. Clinical Psychology Review, 31, 949–964. Myerson, D., Grant, K., Carter, J., & Kilmer, R. (2011). Posttraumatic growth among children and adolescents: A systematic review. Clinical Psychology Review, 31, 949–964.
go back to reference Nasrabadi, A. N., Taghavi-Larigani, T., Mahmodi, M., & Taghlili, F. (2002). Comparison of the effect of Benson relaxation methods and frequency Azkar recommended on the Status Anxiety Patients before abdominal surgery. Hayat Journal, 23, 29–37. Nasrabadi, A. N., Taghavi-Larigani, T., Mahmodi, M., & Taghlili, F. (2002). Comparison of the effect of Benson relaxation methods and frequency Azkar recommended on the Status Anxiety Patients before abdominal surgery. Hayat Journal, 23, 29–37.
go back to reference Nikfarid, L., Rassouli, M., Borimnejad, L., Alavimajd, H. (2018). Religious coping in iranian mothers of children with cancer: A qualitative content analysis. Journal of Pediatric Oncology Nursing, 35(3), 188–198.PubMed Nikfarid, L., Rassouli, M., Borimnejad, L., Alavimajd, H. (2018). Religious coping in iranian mothers of children with cancer: A qualitative content analysis. Journal of Pediatric Oncology Nursing, 35(3), 188–198.PubMed
go back to reference Park, C. L., & Gutierrez, I. A. (2013). Global and situational meanings in the context of trauma: Relations with psychological well-being. Counselling Psychology Quarterly, 26(1), 8–25. Park, C. L., & Gutierrez, I. A. (2013). Global and situational meanings in the context of trauma: Relations with psychological well-being. Counselling Psychology Quarterly, 26(1), 8–25.
go back to reference Reyhani, T., Sekhatpour, Z., Heydarzade, M., Mousavi, S., & Mazloom, S. R. (2014). The effect of self-care education on tolerance spiritual distress in mothers of premature infants admitted to the Neonatal Intensive Care Unit. The Iranian Journal of Obstetrics, Gynecology and Infertility, 17(97), 18–28. Reyhani, T., Sekhatpour, Z., Heydarzade, M., Mousavi, S., & Mazloom, S. R. (2014). The effect of self-care education on tolerance spiritual distress in mothers of premature infants admitted to the Neonatal Intensive Care Unit. The Iranian Journal of Obstetrics, Gynecology and Infertility, 17(97), 18–28.
go back to reference Rosmarin, D., Pargament, K., & Mahoney, A. (2009). The role of religiousness in anxiety, depression, and happiness in a Jewish community sample: A preliminary investigation. Mental Health, Religion and Culture, 12, 97–113. Rosmarin, D., Pargament, K., & Mahoney, A. (2009). The role of religiousness in anxiety, depression, and happiness in a Jewish community sample: A preliminary investigation. Mental Health, Religion and Culture, 12, 97–113.
go back to reference Royse, D., & Badger, K. (2017). Near-death experiences, posttraumatic growth, and life satisfaction among burn survivors. Social Work in Health Care, 56(3), 155–168.PubMed Royse, D., & Badger, K. (2017). Near-death experiences, posttraumatic growth, and life satisfaction among burn survivors. Social Work in Health Care, 56(3), 155–168.PubMed
go back to reference Seyed Bagheri, S. H., Dehghan, M., Alavi, S. H., Iranmanesh, S., & Khoshab, H. (2016). Burst out of the dead land by the help of spirituality: A case study of living with blindness and cancer. Journal of Religion and Health, 55(4), 1–11. Seyed Bagheri, S. H., Dehghan, M., Alavi, S. H., Iranmanesh, S., & Khoshab, H. (2016). Burst out of the dead land by the help of spirituality: A case study of living with blindness and cancer. Journal of Religion and Health, 55(4), 1–11.
go back to reference Seyedamini, B. (2011). Fears, needs and nursing support of mothers during their Child’s Hospitalization. Iran Journal of Nursing (2008–5923), 24(72). Seyedamini, B. (2011). Fears, needs and nursing support of mothers during their Child’s Hospitalization. Iran Journal of Nursing (20085923), 24(72).
go back to reference Smith, S., & Cook, S. (2004). Are reports of posttraumatic growth positively biased? Journal of Traumatic Stress, 17(4), 353–358.PubMed Smith, S., & Cook, S. (2004). Are reports of posttraumatic growth positively biased? Journal of Traumatic Stress, 17(4), 353–358.PubMed
go back to reference Streisand, R., & Tercyak, K. P. (2004). Parenting chronically III children the scope and impact of pediatric parenting stress. In Handbook of parenting: Theory and research for practice, 181. Streisand, R., & Tercyak, K. P. (2004). Parenting chronically III children the scope and impact of pediatric parenting stress. In Handbook of parenting: Theory and research for practice, 181.
go back to reference Taheri, H. (2005). The role of religion in mental health. Islamic Jurisprudence Research, 1(3), 5–21. Taheri, H. (2005). The role of religion in mental health. Islamic Jurisprudence Research, 1(3), 5–21.
go back to reference Thiele, A., Weigel, J., Ziesch, B., Rohde, C., Mütze, U., Ceglarek, U., Beblo, S. (2012). Nutritional changes and micronutrient supply in patients with phenylketonuria under therapy with tetrahydrobiopterin (BH4). In JIMD reports-case and research reports, 2012/6, pp. 31–40. Thiele, A., Weigel, J., Ziesch, B., Rohde, C., Mütze, U., Ceglarek, U., Beblo, S. (2012). Nutritional changes and micronutrient supply in patients with phenylketonuria under therapy with tetrahydrobiopterin (BH4). In JIMD reports-case and research reports, 2012/6, pp. 31–40.
go back to reference Thomas, D. S., Shakman, L. M. W., Saraswathy, K., & Arulappan, J. (2017). Parenting a child with metabolic diseases: Impact on health related quality of life of parents. Diabetes & Metabolic Syndrome: Clinical Research & Reviews, 11(1), 25–29. Thomas, D. S., Shakman, L. M. W., Saraswathy, K., & Arulappan, J. (2017). Parenting a child with metabolic diseases: Impact on health related quality of life of parents. Diabetes & Metabolic Syndrome: Clinical Research & Reviews, 11(1), 25–29.
go back to reference Thyme, K. E., Wiberg, B., Lundman, B., & Graneheim, U. H. (2013). Qualitative content analysis in art psychotherapy research: Concepts, procedures, and measures to reveal the latent meaning in pictures and the words attached to the pictures. The Arts in Psychotherapy, 40(1), 101–107. Thyme, K. E., Wiberg, B., Lundman, B., & Graneheim, U. H. (2013). Qualitative content analysis in art psychotherapy research: Concepts, procedures, and measures to reveal the latent meaning in pictures and the words attached to the pictures. The Arts in Psychotherapy, 40(1), 101–107.
go back to reference Tuck, I. (2012). A critical review of a spirituality intervention. Western Journal of Nursing Research, 34(6), 712–735.PubMed Tuck, I. (2012). A critical review of a spirituality intervention. Western Journal of Nursing Research, 34(6), 712–735.PubMed
go back to reference Vaismoradi, M., Turunen, H., & Bondas, T. (2013). Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study. Nursing & Health Sciences, 15(3), 398–405. Vaismoradi, M., Turunen, H., & Bondas, T. (2013). Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study. Nursing & Health Sciences, 15(3), 398–405.
go back to reference Wysocki, T., & Gavin, L. (2005). Paternal involvement in the management of pediatric chronic diseases: Associations with adherence, quality of life, and health status. Journal of Pediatric Psychology, 31(5), 501–511.PubMed Wysocki, T., & Gavin, L. (2005). Paternal involvement in the management of pediatric chronic diseases: Associations with adherence, quality of life, and health status. Journal of Pediatric Psychology, 31(5), 501–511.PubMed
go back to reference Zeligman, M., Varney, M., Grad, R. I., & Huffstead, M. (2018). Posttraumatic growth in individuals with chronic illness: The role of social support and meaning making. Journal of Counseling & Development, 96(1), 53–63. Zeligman, M., Varney, M., Grad, R. I., & Huffstead, M. (2018). Posttraumatic growth in individuals with chronic illness: The role of social support and meaning making. Journal of Counseling & Development, 96(1), 53–63.
Metadata
Title
Spirituality, a Path to Peace: The Experiences of Parents Who Have Children with Phenylketonuria
Authors
Monirsadat Nematollahi
Roghayeh Mehdipour-Rabori
Behnaz Bagheryan
Publication date
01-02-2021
Publisher
Springer US
Keyword
Phenylketonuria
Published in
Journal of Religion and Health / Issue 1/2021
Print ISSN: 0022-4197
Electronic ISSN: 1573-6571
DOI
https://doi.org/10.1007/s10943-019-00903-w

Other articles of this Issue 1/2021

Journal of Religion and Health 1/2021 Go to the issue