Understanding and supporting the psychological wellbeing of fathers of children with Intellectual Disability (ID)

Lead Research Organisation: University of Warwick
Department Name: CEDAR

Abstract

This fellowship focuses on the wellbeing of parents of children with an Intellectual Disability (ID) (commonly known as a learning disability) in the UK. Individuals with a learning disability will have reduced intellectual ability, take longer to learn new things, and will require additional support according to their level of disability (mild-moderate, severe-profound) for the whole of their life. Individuals with ID can also have other specific conditions such as autism or Down's syndrome.

Having a disability is not just experienced by the individual but those who care for and about the person with a disability. Despite this, research has not always considered the impact on families from a systems perspective, which means considering the child within the context of their family and exploring the impact that raising a child with ID can have on family units and members. This fellowship looks to build on my PhD work to develop a better understanding of families of children with ID, know more about their experiences, and contribute evidence which can be used to support them in the future. Therefore, a key aim will be to write-up some of my doctoral research to extend knowledge in the academic community and share findings with parents of children with ID and professionals who support them in order to improve their lives.

The activities proposed in the fellowship will focus specifically on the outcomes of fathers with ID because we know little about their perspectives and experiences. Typically, when researchers have asked families to take part in research, it is mothers that respond and take part in answering questions about themselves, their child, and their family and so research evidence is often focused on mothers. This new project will consult with fathers of children with ID to share my findings and existing research and to gain their experiences in order to create a booklet with fathers, for other fathers. The aim of this work is to recognise fathers of children with ID, collaborate with them to better understand their needs, and to share information with others.

The third aim of the fellowship is to conduct some new research on fathers of children with ID using some existing large-scale data. This new study will focus on fathers of children with ID, looking at the role of father wellbeing and parenting on the long-term outcomes of their children. The research will test a theory called the Family Stress Model (Conger & Donellan, 2007) which proposes that early family adversity (such as poverty) affects child development by reducing the wellbeing of parents, which then in turn increases the likelihood of negative parenting. This model has never been tested with fathers of children with ID and so will be a unique piece of research.

Publications

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Description Because of this funding, I was able to set-up a Dads of Disabled Children Research Advisory Group which included 5 fathers of disabled children from the local area. Together we used family theory and research from my doctoral and postdoctoral work to co-produce a suite of online resources for other fathers raising a disabled child. These resources are freely available to the general public and will be publicised at an online launch event on 31st March 2021 (https://dads.eventbrite.co.uk/). We have plans to continue this work and are currently collaborating with local charities to start to create a larger network of dads of disabled children and design interventions to support their well-being.

New knowledge has emerged from this fellowship. Through conversation with the fathers of disabled children, I now have a better understanding of why fathers do not get involved in research studies as readily as mothers. With this new knowledge, I will be able to design research studies and interventions which are more effective in recruiting and retaining fathers.

The fellowship has allowed me to establish a partnership with 'users' of my research and increase my research capacity - specifically skills in dissemination of research findings and co-production with individuals outside of academia.

The fellowship has allowed me to continue to enhance my advanced statistical analysis skills - in particular cross-sectional and longitudinal analyses of secondary population-representative data (Millennium Cohort Study; MCS).
Exploitation Route I envisage that the video resources co-produced with the fathers of disabled children will go onto have a positive impact on non-academic audiences such as fathers of disabled children (and the children themselves as father well-being influences child outcomes). They can freely access these resources, reflect on their own health and well-being and consider ways to support themselves and their family. These resources may also be used by third-sector organisations, such as charities, who support families of disabled children. I am currently having conversations with a large disability charity about developing father-specific support which will be informed by my work with the fathers. Professionals in the field (i.e. psychologists, educators, support workers) can also use the resource and signpost fathers to it.

I am going to continue to work with fathers in the Dads of Disabled Children Research Advisory group to think about other avenues of impact and we are also considering future research priorities - including the possibility of applying for additional research funding.

Academic audiences (researchers, psychologists, students) will benefit from the journal article published during the fellowship period on fathers of children with Intellectual Disability (Langley et al., 2020) which used population-representative data (Millennium Cohort Study). The conclusions and recommendations of this article (e.g. that there were only small differences between fathers with and without a child with ID, and that support should focus on fathers of children with behavioural and emotional difficulties and living in poverty) will inform practitioners' thinking and practices.
Sectors Education,Healthcare,Other

URL https://warwick.ac.uk/fac/soc/cedar/familyresearch/fatheradvisorygroup/
 
Description Research findings from my doctoral and postdoctoral work have been disseminated with a group of fathers of disabled children ('users' of my research) who agreed to be members of a Research Advisory group. This has led to increased understanding about the role of family research and the link between paternal well-being and child outcomes. The group have co-produced online video resources focusing on paternal well-being for other fathers of disabled children (informed by theory and research findings). The fathers involved reported that they are now more interested in research and feel more empowered and confident to speak to other dads about their experiences. Many of the dads want to continue with the group and to be involved in father-focused support and future research bids focused on dads.
First Year Of Impact 2021
Sector Education,Other
Impact Types Societal

 
Description Dissemination of research findings with dads of disabled children (parental caregivers) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Seven fathers of disabled children attended an online Zoom meeting where I talked about family research and shared some of my research findings. We had discussions about why fathers tend to not get involved in research and what would make a difference when trying to recruit and retain fathers to research projects. This activity led to changes in thinking for the fathers - they reported that they had previously known little about family research and the importance of paternal well-being for children's outcomes. 5/7 of the fathers engaged in this activity joined the Dads of Disabled Children Research Advisory group which went onto co-create an output for other fathers.
Year(s) Of Engagement Activity 2020