Longing: The Lived Experience of Spirituality in Adolescents with Duchenne Muscular Dystrophy

Baldacchino, 2001, Spiritual coping strategies: A review of the nursing research literature, Journal of Advanced Nursing, 34, 833, 10.1046/j.1365-2648.2001.01814.x Barnes, 2000, Spirituality, religion, and pediatrics: Intersecting worlds of healing, Pediatrics, 104, 899, 10.1542/peds.106.S3.899 Barnum, 2003 Batten, 1999, Adolescent sibling bereavement as a catalyst for spiritual development: A model for understanding, Death Studies, 23, 529, 10.1080/074811899200876 Benner, 1985, Quality of life: A phenomenological perspective on explanation, prediction, and understanding in nursing science, Advances in Nursing Science, 8, 1, 10.1097/00012272-198510000-00004 Benner, 1989 Bresolin, 1994, Cognitive impairment in Duchenne muscular dystrophy, Neuromuscular Disorders, 4, 359, 10.1016/0960-8966(94)90072-8 Burkhardt, 1989, Spirituality: An analysis of the concept, Holistic Nursing Practice, 3, 69, 10.1097/00004650-198905000-00011 Burkhardt, 2002 Burkhart, 2001, Spirituality and religiousness: Differentiating the diagnoses through a review of the nursing literature, Nursing Diagnosis, 12, 45, 10.1111/j.1744-618X.2001.tb00118.x Chance, 1998, Molecular basis of neuromuscular disease, Physical Medicine and Rehabilitation Clinics of North America, 9, 49, 10.1016/S1047-9651(18)30280-8 Christian, 2001, Cultural resources and psychological adjustment of African American children: Effects of spirituality and racial attribution, Journal of Black Psychology, 27, 43, 10.1177/0095798401027001003 Clarke, 2001 Coles, 1990 Collins, 2004, The construct of hope in the rehabilitation process, Rehabilitation Education, 18, 175 Cotton, 2005, The impact of adolescent spirituality on depressive symptoms and health risk behaviors, Journal of Adolescent Health, 36, e7, 10.1016/j.jadohealth.2004.07.017 Davies, 2002, Addressing spirituality in pediatric hospice and palliative care, Journal of Palliative Care, 18, 59, 10.1177/082585970201800109 Davis, 2003, Meaning, purpose, and religiosity in at-risk youth: The relationship between anxiety and spirituality, Journal of Psychology & Theology, 31, 356, 10.1177/009164710303100406 DeForge, 2001, Children's perceptions of homelessness, Pediatric Nursing, 27, 377 Eder, 2003, Interviewing children and adolescents Emblen, 1992, Religion and spirituality defined according to current use in nursing literature, Journal of Professional Nursing, 8, 41, 10.1016/8755-7223(92)90116-G Erikson, 1963 Farran, 1989, Development of a model for spiritual assessment and intervention, Journal of Religion and Health, 28, 185, 10.1007/BF00987750 Ferrell, 2002, Family perspectives of ovarian cancer, Cancer Practice, 10, 269, 10.1046/j.1523-5394.2002.106001.x Fowler, 1981 Fowler, 2004, Stages of faith and identity: Birth to teens, Child Adolescent Psychiatric Clinics of North America, 13, 17, 10.1016/S1056-4993(03)00073-7 Francis, 1996, The relationship between personal prayer and purpose in life among churchgoing and on-churchgoing twelve-to-fifteen-year-olds in the UK, Religious Education, 91, 9, 10.1080/0034408960910102 Fryback, 1993, Health for people with a terminal diagnosis, Nursing Science Quarterly, 6, 147, 10.1177/089431849300600308 Goldberg, 1998, Connection: An exploration of spirituality in nursing care, Journal of Advanced Nursing, 27, 836, 10.1046/j.1365-2648.1998.00596.x Goldman, 1964 Grey, 1997, Coping behaviors at diagnosis and in adjustment one year later in children with diabetes, Nursing Research, 46, 312, 10.1097/00006199-199711000-00003 Harms, 1944, The development of religious experience in children, The American Journal of Sociology, 50, 112, 10.1086/219518 Hay, D. (1985). Suspicion of the spiritual: Teaching religion in a world of secular experience. British Journal of Religious Education, 7, 140–147, 134. Heller, 1986 Hendricks-Ferguson, 2006, Relationships of age and gender to hope and spiritual well-being among adolescents with cancer, Journal of Pediatric Oncology Nursing, 23, 189, 10.1177/1043454206289757 Hermann, 2001, Spiritual needs of dying patients: A qualitative study, Oncology Nursing Forum, 28, 67 Hodge, 2001, Substance use: Spirituality and religious participation as protective factors among rural youths, Social Work Research, 25, 153, 10.1093/swr/25.3.153 Hoffman, 1998, Peak experiences in childhood: An exploratory study, Journal of Humanistic Psychology, 38, 109, 10.1177/00221678980381011 Holder, 2000, The association between adolescent spirituality and voluntary sexual activity, Journal of Adolescent Health, 26, 295, 10.1016/S1054-139X(99)00092-0 Holm, 1999, Analyses of longing: Origins, levels, and dimensions, The Journal of Psychology, 133, 621, 10.1080/00223989909599768 Holm, 2001, Dimensions and aspects of longing: Age and gender differences in swedish 9-, 12- and 15 year old children, The Journal of Psychology, 135, 381, 10.1080/00223980109603706 Houskamp, 2003, Spirituality in children and adolescents: Research findings and implications for clinicians and researchers, Child and Adolescent Psychiatric Clinics of North America, 13, 221, 10.1016/S1056-4993(03)00072-5 Hyde, 1990 Kendrick, 2000, Spirituality: Its relevance and purpose for clinical nursing in a new millennium, Journal of Clinical Nursing, 9, 701, 10.1046/j.1365-2702.2000.00415.x Klingberg, 1959, A study of religious experience in children from 9–13 years of age, Religious Education, 54, 211, 10.1080/0034408590540302 Knafl, 2002, The challenge of normalization for families of children with chronic conditions, Pediatric Nursing, 28, 49 Langille, 2002, Factors associated with sexual intercourse before age 15 among female adolescents in Nova Scotia, The Canadian Journal of Human Sexuality, 11, 91 Lashley, 1998 Lazarus, 1984 Lerner, 2002 Levin, 2001, Incident pregnancy rates in HIV infected and HIV uninfected at-risk adolescents, Journal of Adolescent Health, 29, 101, 10.1016/S1054-139X(01)00281-6 Lin, 2003, Psycho-spiritual well-being in patients with advanced cancer: An integrative review of the literature, Journal of Advanced Nursing, 44, 69, 10.1046/j.1365-2648.2003.02768.x Lindsey, 2000, How runaway and homeless youth navigate troubled waters: Personal strengths and resources, Child & Adolescent Social Work Journal, 17, 115, 10.1023/A:1007558323191 Lytle, 2003, Predicting adolescents' intake of fruits and vegetables, Journal of Nutrition Education Behavior, 35, 170, 10.1016/S1499-4046(06)60331-X Madden, 2002, Psychological adjustment in children with end stage renal disease: The impact of maternal stress and coping, Child: Care, Health & Development, 28, 323, 10.1046/j.1365-2214.2002.00273.x McCree, 2003, Religiosity and risky sexual behavior in African-American adolescent females, Journal of Adolescent Health, 33, 2, 10.1016/S1054-139X(02)00460-3 Merriam-Webster Online Dictionary Miller, 2000, Religiosity and substance use and abuse among adolescents in the national comorbidity survey, Journal of the American Academy of Child & Adolescent Psychiatry, 39, 1190, 10.1097/00004583-200009000-00020 Moizard, 1998, Are Dp71 and Dp140 brain dystrohin isoforms related to cognitive impairment in Duchenne muscular dystrophy?, American Journal of Medical Genetics, 80, 32, 10.1002/(SICI)1096-8628(19981102)80:1<32::AID-AJMG6>3.0.CO;2-Y Mytko, 1999, Body, mind and spirit: Towards the integration of religiosity and spirituality in cancer quality of life research, Psycho-Oncology, 8, 439, 10.1002/(SICI)1099-1611(199909/10)8:5<439::AID-PON421>3.0.CO;2-L Nagai-Jacobson, 1989, Spirituality: Cornerstone of holistic nursing practice, Holistic Nursing Practice, 3, 18, 10.1097/00004650-198905000-00006 National Study of Youth & Religion Oxford English Dictionary Online Pearce, 2003, Religiousness and depressive symptoms among adolescents, Journal of Clinical Child and Adolescent Psychology, 32, 267, 10.1207/S15374424JCCP3202_12 Pehler, 1997, Children's spiritual response: Validation of the nursing diagnosis spiritual distress, Nursing Diagnosis, 8, 55, 10.1111/j.1744-618X.1997.tb00138.x Pendleton, 2002, Religious/Spiritual coping in childhood cystic fibrosis: A qualitative study, Pediatrics, 109, 134, 10.1542/peds.109.1.e8 Piaget, 1976 Pierce, 1995, Development of faith and religious understanding in children, Psychological Reports, 76, 957, 10.2466/pr0.1995.76.3.957 Pizer, 2000 Polakoff, 1998, The psychosocial and cognitive impact of Duchenne's muscular dystrophy, Seminars in Pediatric Neurology, 5, 116, 10.1016/S1071-9091(98)80027-2 2002 Reed, 1992, An emerging paradigm for the investigation of spirituality in nursing, Research in Nursing and Health, 15, 349, 10.1002/nur.4770150505 Reed, 2003, The theory of self-transcendence, 145 Regnerus, 2003, Staying on track in school: Religious influences in high- and low-risk settings, Journal for the Scientific Study of Religion, 42, 633, 10.1046/j.1468-5906.2003.00208.x Resnick, 1993, The impact of caring and connectedness on adolescent health and well-being, Journal of Paediatric Child Health, 29, S3, 10.1111/j.1440-1754.1993.tb02257.x Ritt-Olson, 2004, The protective influence of spirituality and “health-as-a-value” against monthly substance use among adolescents varying in risk, Journal of Adolescent Health, 34, 192, 10.1016/j.jadohealth.2003.07.009 Sandelowski, 1986, The problem of rigor in qualitative research, Advanced Nursing Science, 8, 27, 10.1097/00012272-198604000-00005 Scott, 2006, Wrestling with the spirit(ual): Grappling with theory, practice and pedagogy, International Journal of Children's Spirituality, 11, 87, 10.1080/13644360500503431 Seiffge-Krenke, 1993, Coping behavior in normal and clinical samples: More similarities than differences, Journal of Adolescence, 16, 285, 10.1006/jado.1993.1026 Sexson, 2003, Religious and spiritual assessment of the child and adolescent, Child and Adolescent Psychiatric Clinics of North America, 13, 35, 10.1016/S1056-4993(03)00075-0 Smith, 2005 Snethen, J. A., Broome, M. E., Bartels, J., & Warady, B. A. (2001). Adolescents' perception of living with end stage renal disease. Pediatric Nursing, 27, 159–161, 164–157. Sutherland, 2001, Social dimensions of adolescent substance use, Addiction, 96, 445, 10.1046/j.1360-0443.2001.9634458.x Tanyi, 2002, Towards clarification of the meaning of spirituality, Journal of Advanced Nursing, 39, 500, 10.1046/j.1365-2648.2002.02315.x Taylor, 2001, Earth and nature-based spirituality (part I): From deep ecology to radical environmentalism, Religion, 31, 175, 10.1006/reli.2000.0256 van Manen, 1990 Weaver, 2000, Research on religious variables in five major adolescent research journals: 1992 to 1996, The Journal of Nervous and Mental Disease, 188, 36, 10.1097/00005053-200001000-00007 Wong, 2006, A systematic review of recent research on adolescent religiosity/spirituality and mental health, Issues in Mental Health Nursing, 27, 161, 10.1080/01612840500436941 Wright, 2005