Caregivers of children with special health needs work the healthcare professional relationship to enhance perceptions of competence

Abstract

sigalet e, benzies k & bouchal sr (2011) Journal of Nursing and Healthcare of Chronic Illness 3, 436–444 Caregivers of children with special health needs work the healthcare professional relationship to enhance perceptions of competence Aim. To expose the basic social process that provides contextual understanding of caregivers of children with special health needs experiences in healthcare professional relationships. Background. Previous research has focussed on caregiver perceptions of unmet needs, the relationship between family-centred care and caregiver well-being and satisfaction. However, the relationship between relationship dynamics, family-centred care doctrine, unmet caregiver expectations and caregiver-perceived competence has not been shown. Method. In 2007, 13 caregivers of children with a disability between ages 2 and 14 years were interviewed. Strauss and Corbin’s grounded theory method was used to synthesise a core social process about how interactions between caregivers and healthcare professionals impacted caregivers’ abilities to meet the needs of their child and family. Conclusions. The core social process revealed that caregivers worked relationships with healthcare professionals in an attempt to optimise the amount of time and use of available time to positively influence information sharing and be validated and supported. ‘Working the relationship’ is symbolic of the amount of time, and purposeful effort caregivers expended in their role, trying to influence the healthcare professional to address their expectations. When needs were unmet, caregivers were forced to adapt their expectations and develop strategies to regenerate themselves to maintain a sense of stability in life. In addition, the notable difference in tenacity between fathers and mothers appears as a new finding. The findings highlight the inconsistency and complexity that plagues the integration of family-centred care in healthcare relationships. These inconsistencies undermine caregiver perceptions of competence and their perceived ability to manage the needs of the child and family. Relevance for clinical practice. These findings reinforce the need for listening to what caregivers report they need in relationships to feel competent. Modifying family-centred care doctrine to explicitly address caregiver concerns is worthy of future research, considering the consequence for caregiver competence in care-giving roles.