| Summary: | Background: Clefts of the lip and / or palate are amongst the most commonly occurring congenital conditions. Potential consequences for a child include disturbance to feeding, breathing, hearing, speech development, dental and facial growth, as well as effects on emotional and social well-being, behaviour and learning. In the UK, a long-term programme of treatment is offered by multidisciplinary integrated teams of specialist clinicians, however little is known about how parents may experience this process. Study aim and design: The study aimed to explore in detail how parents caring for a child with a cleft experience the treatment journey and in particular, to illuminate the motivations and influences that may be involved for them in making decisions about treatment. This is the first known study, either in the UK or elsewhere, to have explored these topics in detail with mothers and fathers. Using a qualitative approach, Grounded Theory principles guided the study sampling, data collection and analysis. In-depth, semi-structured interviews with 35 parents of children between the ages of 20 weeks and 21 years generated rich study data. Findings: A theoretical framework to explain the social process that parents experienced was developed, consisting of the main category doing the 'right' thing and its three sub-categories doing something, fitting in and being in the 'right' hands. The main category doing the 'right' thing emerged as the central concern of parents, because the data suggest that doing their 'best' for children by being a 'good' parent underpinned the main beliefs and actions for which parents accounted. The key way in which parents accomplished doing the 'right' thing appeared to be by doing something, in pursuing cleft treatment for their children. Parents were concerned about their child fitting in and pursued treatments in the hope of avoiding stigmatising social attitudes and to help their child reach their full potential. Parents also appeared to construct a deep-seated trust in specialist cleft care clinicians, maintaining a belief in being in the 'right' hands to enable their continued pursuit of treatments. Parents' accounts of how they experienced the process of their child's cleft treatment suggest a number of complex tensions which they were contending with throughout. These tensions reveal that in their concern about doing the 'right'thing, parents may have been vulnerable to several emotional, social and cultural pressures and expectations. These include: worries about their child's future as well as concerns about being a 'good' parent, conforming to social 'norms' and contending with the power imbalance inherent in relationships with health care professionals. Recommendations: A family-centred approach to care is recommended in order to enhance cleft services. It is suggested that along the course of a child's treatment journey, families may benefit from routine assessments of their emotional and social well-being, as well as their preferences for the delivery of information and participation in treatment decision making. Emotional, practical and decisional support might then be provided to families as desired. Clinicians might also become more aware of issues of power and trust in relationships with families as well as their own professional perspectives, in order to better meet parents' needs in relation to treatment decision making.
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