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

Abstract

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 BackgroundThis 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 MethodsSemi‐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. ResultsParents 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. CONCLUSIONSThose 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.

Quality of Life and Concerns in Parent Caregivers of Adult Children Diagnosed with Intellectual Disability: A Qualitative Study

“…Nonetheless, spare time is key to maintaining physical and mental health, and to be able to dedicate time for personal enjoyment [59,67,68]. These parents also often experienced emotions related to mourning, such as intense grief, sadness, and sorrow, both at the time of diagnosis and later [69,70]. Sorrow related to their child's ID also produced an overload process, and negatively influenced the physical and emotional well-being of these patents [71,72].…”

Care Coordination Needs of Families of Children with Down Syndrome: A Scoping Review to Inform Development of mHealth Applications for Families

“…Articles were evenly distributed between qualitative and quantitative study designs. Fourteen studies were qualitative [ 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 ], eleven were quantitative [ 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 ], and five were mixed methods [ 20 , 47 , 48 , 49 , 50 ]. Investigators in six studies completed secondary analyses, four using data from the National Survey of Children with Special Health Care Needs (NS-CSHCN) [ 51 , 52 , 53 , 54 ], one completing a chart review [ 7 ], and one using the Intellectual Disability Exploring Answers (IDEA) database [ 55 ].…”

“…In the qualitative studies, investigators collected data through interviews or focus groups, using interview/discussion guides developed for the study. Twelve qualitative studies collected interview data [ 23 , 25 , 26 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 49 , 50 ]. Investigators in four studies collected data from focus groups [ 24 , 27 , 29 , 48 ].…”

“…Krueger and colleagues were the (2019) only investigators to describe using triangulation for analysis [ 28 ], while van den Driessen Mareeuw (2019) was the only author to report using framework analysis [ 35 ]. Finally, investigators in six studies used content analysis [ 23 , 29 , 30 , 33 , 34 , 50 ]. Cartwright and Boath (2018) analyzed focus group findings by using a phenomenological approach [ 24 ], while the others completed a content analysis [ 27 , 29 , 48 ].…”

Confident championing: A grounded theory of parental adjustment following a child’s diagnosis of developmental disability

“…Several theoretical models have been proposed to explain the adjustment process. A bereavement model such as the dual process model which theorises two processes in the bereavement experience, a loss orientated and a restoration orientated process, has been proposed (Sheehan & Guerin, 2018). Post Traumatic Growth Theory proposes that following a major life crisis, there is potential for growth.…”