Exploring the range of emotional response experienced when parenting a child with an intellectual disability: The role of dual process

Accessible summary This study explored the different emotions that parents can feel when their child has a disability; asking whether the theory of loss and grief known as the Dual Process Model can help to understand the role of these emotions for parents. We interviewed eleven parents (eight mothers; three fathers) who have a child with a disability. Six of the parents had a child with Down syndrome and five had children with more complex needs. Parents reported many different emotions, describing them as very strong when the child was young. Some parents were not comfortable talking about these emotions with staff. When and how information about disability is given were both important to parents. The Dual Process Model helped us to understand how parents experience different emotions over time, learning to adjust to difficult feelings. Disability services should understand the balance between understanding the strong emotions parents feel and knowing when support might be needed. Abstract Background This study aimed to explore the range of emotions experienced by parents in the early years of managing their child's disability, to assess the relevance of the Dual Process Model in understanding these emotions within an adjustment process and to identify the types of support and information perceived by parents as helpful during this time. Materials and Methods Semi‐structured interviews were conducted with parents of children (5–7 years) who had attended early intervention services. Eleven parents participated, six of children with Down syndrome and five of children with complex needs. Interviews were transcribed, and a thematic analysis undertaken. Results Parents report experiencing a wide range of emotions, which were described as particularly intense in the early months following diagnosis. There was some ambivalence in relation to discussing emotions with professionals. The timing of the provision of information on emotions and the nature of the delivery of this information were considered crucial by parents in determining it as helpful or unhelpful to them. Reflecting the Dual Process Model, while a loss orientation was evident in descriptions of the early years, there was evidence of a restoration orientation. CONCLUSIONS Those delivering services must consider the delicate balance of maintaining awareness that intense emotions can be experienced during this adjustment process and being available when required, while respecting the privacy that many wish to preserve during the early years. One issue for professionals to address is how best to provide the necessary emotional support, mindfully and with respect for boundaries.