Psychosocial dimensions in caring : the lived experience of parents after the birth of children with cleft lip and/or palate

Abstract

The transition to parenthood comprised a major shift that increases both marital and personal stresses to the couple. Although the stress of this transition was well documented, how parents of infants born with visible birth defects such as cleft lip and/or palate adjusted and adapted to their challenging parental roles had received very little attention. Having a child born with congenital defects increased the demands and stresses placed on the entire family unit. It caused the family, especially the parents, not only had to face the normative transition of parenthood, but also the situational stresses of the abnormal birth. The main aim of this phenomenological stage study was to understand the lived experiences of these parents at the time of birth of the child with cleft lip and palate from an emic perspective. Based on an insightful understanding of these parents' experience from their narration, intervention strategies to facilitate and enhance the transition into parenthood would be explored and recommended. 14 parents from 10 families were recruited for in-depth interviews. Additional materials from field notes, diaries and observations in parent's support group were also used to enhance the understanding of these parents' experiences. From the parents' narration, one central and six essential themes emerged. These include a central theme of 'Being a parent on a long and devastating journey with their child'. The essential themes was based on a transitional model, of which the parents would be described as embarking on a journey, to reaching out to seek information, then moved onto decision making. Other themes focussed on finding the coping strategies identified by the parents under the theme 'one stop at a time' and exploring the facilitation and hurdles that helped or hindered the transition which were subsumed under the themes of 'humps and bumps on the journey' and 'free rides on the journey'. It was evident that health care professionals needed to gain a more holistic picture of how the family system functions under developmental life crisis, and how the situational stress may lead to difficulties in the transition into parenthood. Early interventions were required to promote family adaptation to the infant's defect. The following recommendations were made from the study: (1) Provide structured education or training to the health care team relating to breaking bad news and handling immediate reactions. (2) Adopt a family-centred care approach in postpartum care. (3) Devise a protocol to guide assessment and care on the psychosocial aspects of these parents. (4) Adopt an empathetic attitude a the time of breaking the news. (5) Proved comprehensive, in-depth and consistent information to the parents. (6) Ensure continuous emotional support for the initial periods of transition. (7) Encourage parents to seek emotional support form significant others and voluntary organisations. (8) Allow parents to take a primary role in decision making. It was imperative that nurses should emphasise good relationship, strong psychosocial support and promote mutual understanding between the health care professionals and the clients. It was also important if the health professionals and the general public to have a better understanding of these parents' emotional needs and experiences, thus there would be less stigmatisation and social isolation, which in turn rendered the traumatic experience less daunting and less insurmountable.