Hebblewhite, G., Hutchinson, N., Galvin, K. (2020) Adults with Intellectual Disabilities’ Lived Experiences of Wellbeing and the Internet: A Descriptive Phenomenological Study. Disability & Society, DOI: 10.1080/09687599.2020.1829554
While internet use continues to increase amongst the general population, in comparison, adults with intellectual disabilities are still less likely to access the Internet and benefit from the opportunities it can offer. Non-intellectual disability perspectives and assumptions, which often view the Internet as a risk for those with intellectual disabilities, are considered over the everyday lived online and well-being experiences of adults with intellectual disabilities. In response, this study interviewed 8 participants with intellectual disabilities using a descriptive phenomenological approach. Seven constituents emerged: internet as a mirror; internet enables visibility and invisibility; internet as liberating; internet meets unmet needs; internet creates an active decision maker and expert; internet as friend and foe; and, the body connects to, and disconnects from, the Internet. The findings gave rise to new perspectives, recommendations, and adds to the existing literature on how to support adults with intellectual disabilities’ enjoyable, safe and independent internet use.
Points of interest
Participants with intellectual disabilities described feeling unsafe and restricted in their offline lives, but online they often felt safer and that they could do anything.
Participants did not view their intellectual disability positively. Online they could keep their disabilities hidden from others, creating a variety of identities (creative, strong, protective and helpful) that they felt represented them more accurately.
When the internet was described as a positive resource in life, this was linked to a sense of well-being with an identity emphasis. Additionally, findings point to examples of well-being in spatial, embodied, mood, sense of belonging with others and temporal ways.
This study highlights how danger was negotiated by people with intellectual disabilities in similar ways to dangers in everyday life and how these skills are transferable to offline and online worlds.
Adults with Intellectual Disabilities’ Lived Experiences of Wellbeing and the Internet: A Descriptive Phenomenological Study
being a Thesis submitted for the Degree of Doctor of Philosophy in the University of Hull
by Gillian Helen Hebblewhite, BSc (Hons), BA (Hons) (The University of Lincoln) February 2018
Internet usage continues to increase among adults with intellectual disabilities (IDs), but many are scared to use the internet or are denied access by those who care for them. The internet offers many opportunities, such as the ability to increase social networks and independence, and gain access to health information and support, all of which could contribute to the wellbeing of those with IDs. Due to the lack of qualitative research into the everyday lived online experiences of adults with IDs living in the United Kingdom (UK), decisions around adults with IDs’ internet access and use are often based on reported stories in the media, those without IDs’ experiences, and child-related internet information. This has resulted in an overly paternal and negative approach and a lack of understanding into how best to support adults with IDs’ enjoyable, safe and independent internet use.
Taking a descriptive-empirical phenomenological approach, 8 participants with IDs aged between 19-62 from the Yorkshire and Humber region, were interviewed multiple times using semi-structured and adapted methods about their experiences of wellbeing and the internet. The qualitative data was analysed in two phases: data relating to the individual participant’s context was analysed using inductive thematic analysis (TA), informed by methods set out by Braun and Clarke (2006, 2013), whilst data relating to the concrete lived experiences of the phenomenon was analysed using descriptive-empirical phenomenological methods set out by Giorgi (2009). The essential structure of the phenomenon: internet and wellbeing, was composed of seven constituents:
- The internet as a mirror.
- The internet enables visibility and invisibility.
- The internet as liberating.
- The internet meets unmet needs.
- The internet creates a decision maker and expert.
- The internet as friend and foe.
- The body connects to, and disconnects from, the internet.
The participants’ sense of wellbeing, as well as suffering, was often integral to the internet experience and entwined with their offline context and ID related identities.
Stevens, E., Hebblewhite, G. (2014) Empowering Adults under the Mental Capacity Act. Learning Disability Practice 17(8):16-20 DOI: 10.7748/ldp.17.8.16.e1571
The Mental Capacity Act 2005 states: ‘A person is not to be treated as unable to make a decision unless all practicable steps to help him do so have been taken without success.’ Taking these steps can be a complex process, however. This article explores how practitioners can empower and support adults with learning disabilities to make their own decisions by giving the person the right information, in the right way, at the right time and in the right environment. People with learning disabilities may require time and support to reach decisions, and should be encouraged to evaluate them afterwards.
Available on ResearchGate and Learning Disability Practice
Hebblewhite, G. (2012) Grief in the Transition from Oral to Enteral Feeding Among Children. Learning Disability Practice, 15(10):12-16 DOI: 10.7748/ldp2012.12.15.10.12.c9457
Loss of oral feeding may lead to grief that is unrecognised and unsupported, particularly in the presence of learning disabilities. This can evoke resentment and abnormal grieving responses or challenging behaviour. The child in transition from oral to enteral feeding and the family and/or carers should be assisted through all stages of mourning for this lost activity to final adjustment and acceptance. It is particularly important for children with learning disabilities to know that they as people have a heritage and a history, and learn how to communicate their feelings and cope adequately with future transitions and bereavements.