title: Parent or nurse? The experience of being the parent of a technology-dependent child.
abstract: OBJECTIVE
  This paper reports a study exploring parents' experiences of caring for a child who is dependent on medical technology, and in particular of performing clinical procedures on their own children.
  
  
  BACKGROUND
  A group of children with a continuing need for the support of medical technology have emerged in community settings as a result of medical advances and government policies. Caring for these children has a significant social and emotional impact on parents, because of their specialized and intensive care needs. Obtaining appropriate and coordinated home support services is problematic.
  
  
  METHODS
  Grounded theory techniques were used, and in-depth interviews were conducted with the parents of 24 children.
  
  
  RESULTS
  Parents' accounts revealed that their constructions of parenting were shaped by the nature of their role in caring for their child and by the transformation of their homes by medical equipment and personnel. They described themselves as having a role that had both parenting and nursing dimensions. Parents managed this tension and defined their role and relationship to their child to be primarily one of parenting by differentiating parental care-giving and its underpinning knowledge from that of professionals, particularly nurses.
  
  
  CONCLUSIONS
  Parenting a technology-dependent child alters the meaning of parenting. Professionals need to recognize that providing care has a substantial emotional dimension for parents, and that they need opportunities to discuss their feelings about caregiving and what it means for their parenting identity and their relationship with their child. A key professional nursing role will be giving emotional support and supporting parents' coping strategies. Parents' perceptions of nurses raise questions about whether nurses' caregiving is individualized to the needs of the child and family, and whether parental expertise is recognized.
authors.affiliation: School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK. sue.kirk@manchester.ac.uk
authors.forename: Susan
authors.initials: S
authors.lastname: Kirk
authors.forename: Caroline
authors.initials: C
authors.lastname: Glendinning
authors.forename: Peter
authors.initials: P
authors.lastname: Callery
mesh_terms: D000293:Adolescent; D001294:Attitude to Health; D002648:Child; D002654:Child Care; D002675:Child, Preschool; D019988:Children with Disabilities; D004644:Emotions; D005260:Female; D006701:Home Nursing / Q000523:psychology*; D006801:Humans; D008297:Male; D013677:Medical Laboratory Science / Q000295:instrumentation; D009732:Nursing Care / Q000523:psychology; D010287:Parent-Child Relations; D016487:Parenting; D010290:Parents / Q000523:psychology*; D012111:Residence Characteristics; D012380:Role; D013315:Stress, Psychological