Exploring the support needs of parents of infants with complex health needs in the community

Abstract

The survival rate and life expectancy of infants with complex health needs have increased overthe last decades, and this increases the number of families who have to care for such infants at home. These families seek support in the community setting, and supporting them has a positive impact on the well-being of both the parents and the infant. In South Africa the needs of these parents are not known, and this fact makes it difficult to adequately support them in the community. The aim of this study was to explore and describe the needs of parents of infants with complex health needs in the community setting. Two objectives were set to reach the aim mentioned above: 1) to critically appraise and synthesise the best available evidence on the support needs of parents of infants with complex health needs and 2) to explore and describe parents’ emic perspective on their support needs as parents of infants with complex health needs in a South African context. A sequential mixed method approach was utilised in two phases, here discussed in five chapters. In an attempt to meet objective one, the support needs of parents of infants with complex health needs were determined by means of an integrative literature review from studies obtained through computerised searches of several electronic databases, supplemented by checking reference lists and consultation with experts. This was followed by individual face-to-face interviews with the stated parents in three different settings. The latter addressed the second objective of the study, namely to provide an emic perspective on the support needs of parents of infants with complex health needs in a South African context. The integrative literature review described five main themes on the support needs of parents of infants with complex health needs: need for information, need for parent-to-parent support, need for professional support, need for self-confidence in the care of the infant and need for social support. All of these themes were confirmed in the South African context through the interviews with parents. However, South African parents added an additional theme: the need for normality. The final chapter offers an evaluation of the study and discusses study limitations and recommendations for nursing practice, education and research.