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

Abstract

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.

Children with a rare congenital genetic disorder: a systematic review of parent experiences

“…The lack of knowledge within the health care system led to many unknowns due to a delayed or complicated diagnostic and treatment process with several consultations [ 27 , 30 , 31 , 38 – 41 , 47 – 49 , 53 , 54 ]. The diagnostic process and first phase of the child’s life had therefore been demanding for many parents [ 32 , 40 , 48 , 53 , 56 ]. The longer and more complex the diagnostic process, the more stress the parents felt [ 50 ].…”

“…They felt that they had to inform the work place about their situation [ 57 ] or seek a different work situation [ 29 , 45 , 54 , 59 ], when the child’s care was described as a part-time job in itself [ 27 , 59 ]. Additional care needs also led parents to struggle with finding time for personal and/or social activities [ 30 , 46 , 48 , 55 ], and complicated the preservation of social relations outside the family [ 32 , 39 , 54 , 56 ]. Plans were difficult to make or had to be adjusted to the situation because of the many insecurities associated with daily care and/or treatment demands [ 41 , 51 , 55 ].…”

Living with idiopathic basal ganglia calcification 3: a qualitative study describing the lives and illness of people diagnosed with a rare neurological disease

“…Qualitative studies have been performed for major diseases such as cancer (Ziebland and McPherson 2006 ), rheumatoid arthritis (Hilton et al 2009 ), and motor neuron disease (Newman et al 2009 ; Locock et al 2009 ; Caputo 2014 ). However, relatively few quantitative studies have been conducted on rare diseases, especially cancers (Griffiths et al 2007 ; Witham et al 2008 ), and there is little research on rare neurological diseases (Jaeger et al 2015 ; Purcell et al 2015 ). In Huntington’s disease, for example, patients’ quality of life, and the experiences and perspectives of family carers have been studied (Aubeeluck and Buchanan 2007 ; Williams et al 2009 ; LoGuidice and Hassett 2005 ).…”

Experiences of Canadian Parents of Young Children With Cleft Lip and/or Palate

“…The role of religion in coping was important to those of faith and was a strong factor for decisions around termination and acceptance of the cleft. The relationship of religion and coping has also been described by Purcell et al (2015), who found faith provided a sense of the diagnosis happening for a reason, belief providing resilience, and the sustaining help from faith communities. In general, our study showed a family accepting and sometimes spoiling a child with cleft, with siblings providing emotional and practical support.…”