• Project Leader: Dan Goodley (University of Sheffield) and Janice McLaughlin
• Sponsors: Economic and Social Research Council
• Partners: University of Sheffield

Aims of project

This research project was jointly carried out by researchers at the Universities of Sheffield and Newcastle and was funded by the Economic and Social Research Council (ESRC grant RES-000-23-0129). We examined the care experiences of parents of babies and children needing specialist care and support in hospital and community settings.

We wanted to make parents' voices heard in debates around care provision. We were particularly interested in looking at how parents and young children up to the age of 5 were treated by professionals in the care they received, and how that has helped or hindered their lives as families with disabled babies and young children. We aimed to identify:      

• responsive care that enabled the disabled child to find a place in the parents' and family's lives with positive articulations for future development   
• beneficial care practices, primarily from the perspective of parents  
• good practice on the part of professionals including neonatal and paediatric consultants, health visitors, GPs, community nurses, midwives, social workers, physiotherapists and speech therapists     
• how professionals work with parents in ways which support them in caring for their child 
• how 'impairment' and 'disability' are negotiated between parents and professionals and evaluate how these meanings impact on the provision of care, perceptions of the disabled baby and the resultant understandings of parenting and professional practice

Fieldwork summary

The fieldwork was broken down into distinct but related stages. This involved working with different groups of families of disabled babies and children in the following ways:

1. The accounts of ‘retrospective parents’ - to engage with the retrospective narrative accounts of parents of young disabled children about their experiences of services, professionals and related interventions.
2. Narrative case studies of ‘longitudinal parents’ - to trace the experiences of care received and provided by parents of disabled babies over an 18 month period through the use of narrative interviews.
3. Observations of parent-professional interactions - to explore the interactions between our retrospective and longitudinal parents and a variety of professionals in negotiating the care of the disabled baby and notions of impairment and disability.
4. Observations of parents’ support networks - to examine the wider support networks inhabited by our longitudinal and retrospective parents.

In addition to this work with families we also spoke to a number of professionals - including focus group interviews with professionals - to investigate their views of the key strategies necessary for different services to provide enabling care and support to families. 

The parents who participated in the research come from a variety of social backgrounds, the research has not aimed to be representative of particular populations, but we have worked with parents of different class backgrounds, race and ethnicities, family form and geographical location. The children have a range of different conditions, diagnostic labels and needs.

Key findings

Through the commitment of the researchers and the involvement of the families, our study has uncovered a number of key findings which are of relevance to policy makers, professionals, parent groups and researchers:

Research Practices                  

Researchers who work with parents, professionals and disabled babies should be encouraged to adopt methods that are rich in terms of time, commitment and level of analysis.            

Parents should be included in the development, implementation and analysis stages of research.       

Parents have sophisticated knowledge of their children, which they have built up from a wealth of different resources and experiences.

Medical Practices              

Diagnosis is contested and negotiated by parents and the professionals that they work alongside.                 

A child’s impairment, condition or healthcare needs are phenomena that change over time, subject to medical treatment, family input, professional and societal opinion.                 

Professionals need to develop alternative approaches to diagnosis other than the typical approach which views diagnosis always as ‘breaking bad news’. 

Gaps in Service Provision                

Parents generally struggle more with coming to terms with fragmented service provision than with the ‘disabilities’ of their children.              

If ‘every child matters’ then professionals need to think more positively and openly about disabled children.             

When parents lose trust in the services they receive, it is difficult for other services to rebuild that trust.                   

Parents still experience secrecy and lack of information around decisions made about their children.

Parental priorities and experiences                 

Parents are engaged in long-standing processes of negotiating, brokering and fighting for the rights of their children.                 

Parents’ understandings of their children are constantly developing, changing and moving and it is therefore unhelpful to view parents as occupying fixed parental types e.g. ‘parent in denial’, ‘parent in crisis’, ‘parent as difficult’. 

Parents occupy roles that are constantly evolving and ‘becoming’.                

Parents often make use of their own parent support networks but these do not always present positive perspectives on living with disability.                   

One of the biggest barriers to the inclusion of disabled children, experienced by their parents, is the prejudice of other parents.

Parents of disabled children are often expected to achieve levels of parental competency that are not always expected of parents of non-disabled children.                 

The treatment of disabled infants is a key part of the process of inclusion or exclusion of disabled children from mainstream life. 

Limits and opportunities in professional practice                

Established and senior medical professionals must embrace alternative models of impairment and disability that challenge ‘deficit thinking’ about disabled children.               

Professionals have opportunities to develop methods for constantly and consistently assessing their assumptions, beliefs and practices: professionals are constantly evolving and ‘becoming’ too.                

Professionals are often frustrated by barriers that exclude them working within a wider context of service provision.                  

Professionals must be sensitive to issues of ethnicity, culture, sexuality, disability and socioeconomic background in a non stereotypical way.                 

Just one committed professional can make all the difference to the lives of children and their families.             

Parents often experience difficulties and problems but they are not the problem.                 

Parents and professionals are caught up in the processes of privatisation and marketisation of health, social care and education.

Enabling care                

Care does not have to simply reflect assumptions and aims that underpin current policies and practices, enabling care often emerges in spite of or in reaction to current priorities.                

Enabling care embraces nurture, support, friendship, partisanship and responsible forms of expertise.                

Children must be understood in terms of their political, social, cultural and historical context.          

Enabling care develops particular visions of the ‘disabled child’ – some which are more positive than others.

Publications

See full list at the end of this page - in addition:

McLaughlin, J. (2011) Modes of care and mothering: How does citizenship and care intersect in the lives of mothers of disabled children? In: Anne Kovalainen, Marja Keranen and Hanne Marlene Dahl (eds) Europeanization, Care and Gender. Basingstoke: Palgrave Macmillan.

Conference presentations

McLaughlin, J. (2011) ‘Modes of care and mothering: How does citizenship and care intersect in the lives of mothers of disabled children?’ Does Every Child Matter, post-Blaire? The Interconnections of Disabled Childhoods Conference, Manchester Metropolitan University, Manchester.  6th April 2011.

McLaughlin, J. (2009) Parental perspectives on evidence: When are parents experts?, European Academy of Childhood Disability, Vilnius, Lithuania, June.

McLaughlin, J. (2009) 'Modes of care and mothering: How does citizenship and care intersect in the lives of mothers of disabled children?’, American Sociological Association, San Francisco, August.

McLaughlin, J. and Clavering, E.K. (2009)‘Ethnographies of Genetic and Kinship Imaginaries’, Vital Politics III, London School of Economics, Sept

McLaughlin, J. and Clavering,, E.K. (2009)‘Ethnographies of Genetic and Kinship Imaginaries’, Society of Medical Anthropology, Yale, Sept

McLaughlin, J. (2008) ‘Boundaries of care and mothering: How does citizenship and care intersect in the lives of mothers of disabled children?’ Gendering Theories of Citizenship: Europeanization and Care’ Conference, Roskilde, Denmark, 1-3 April 2008

McLaughlin, J.  and Clavering, E.K. (2007)‘Community practices: Community support for and withdrawal from Families with Disabled Children’, Community, Work and Family Conference, Lisbon, April.

McLaughlin, J. and Clavering, E.K. (2007)‘Intensive parenting or Intensive caring? The narratives and experiences of parents of disabled babies and infants’, Monitoring parents: Childrearing in the age of ‘intensive parenting’ Conference, University of Kent, May.

McLaughlin, J. and Clavering, E.K. (2007) ‘How inclusion is operationalised in early year settings. Findings from a research study undertaken in Newcastle and Sheffield’. Twelfth Conference and Annual Meeting of the North of England Collaborative Cerebral Palsy Survey, Trevalyan College, University of Durham, 21st of March.

McLaughlin, J.  and Clavering, E.K. (2005)‘Conceptualising Care Experiences in Families with a Young Child with Disabilities: Patterns of enabling of care,’ Community, Work and Family: Change and Transformation, Manchester. March.

McLaughlin, J. (2007) ‘'What makes looking after a baby with complex needs challenging? The perspective of parents,' North of England Paediatric Society, Centre for Life, Newcastle, 15th of June.