Support needs of disabled parents

Each week the Social Care Institute for Excellence analyses research findings behind specific social work practices

Without effective support, many disabled parents struggle to provide their children with an environment in which they can thrive. Unfortunately, there is a lack of information about support needs from the point of view of parents: most of the research focuses on their relationships with services.

Scie’s knowledge review – Supporting disabled parents and parents with additional support needs – provides an overview of the research that is available. The aim is to define the needs of parents at different stages of parenthood and assess the type of support that they need at each stage.

This knowledge review covers research about parents with physical or sensory impairments, learning difficulties, mental health problems, long-term illnesses such as HIV/Aids, and drug or alcohol problems.

Pregnancy and childbirth

For some parents, the need for support starts before or at the birth. Nearly all of the research concerning pregnancy and childbirth for these groups has been undertaken from a medical perspective.

The existing grey literature – by which we mean sources such as internal reports, government documents, conference proceedings, theses, newsletters – for social care provides a mixed picture, with some mothers reporting maternity services going out of their way to provide suitable care while others experienced poor access to services and negative attitudes from health care professionals.

After the birth of a child, parents may need practical support to help with the demands of baby care, such as nappy changing and feeding, both in hospital and when they return home. Or they may need emotional support to help them bond with their baby. Some parents may need both.

Post-natal depression

Mothers who experience post-natal depression are now less likely to be offered a place in a specialist mother and baby unit as there has been a reduction in such units. If a mother has to be admitted to a psychiatric hospital she may therefore be separated from her child, which will have a negative impact on both.

Parents may need ongoing assistance to carry out the everyday tasks of parenting. Parents with learning disabilities will often need support to learn how to respond to and look after their child and this support may also have to be ongoing.

As children grow older, the assistance parents need may change. The little ­research that there is shows that parents face particular barriers in getting their children to school. This need may fluctuate, according to the parent’s state of mental or physical health, or it may be a continuing need for as long as the child is too young to take himself or herself to school. Parents have also reported difficulties in their relationships with schools, created by two main barriers: unhelpful or negative attitudes and a failure to make buildings and communication accessible.

Fluctuations in need

Many parents experience fluctuations in their need for assistance with parenting. Parents who have a mental health problem, for example, may not need help all of the time. Even where a condition is long-term and serious, the person may experience periods of good mental health.

Parents may also have a range of support needs. Research generally finds that most parents in contact with children’s social services experience a range of problems, and this is no different for the parents covered by the knowledge review. For example, many parents with learning disabilities who are in contact with social services experience one or more of the following additional stress factors: childhood abuse or neglect growing up in care domestic violence alcohol abuse.

Some parents will have at least some of their support needs met by extended family, friends or informal community networks. Grandparents often take on a supportive role. The role of the extended family is especially important for parents with learning disabilities. Although there is no firm evidence, anecdotal evidence suggests that parents with learning disabilities are more likely to be able to keep their children if they have support from extended family.

While kinship care is associated with greater stability for children and better continuity, in terms of family and cultural issues, than foster care, there is also evidence that kinship carers are likely to experience greater economic difficulties and poorer accommodation than non-kin foster carers.

Messages for practice

● Where a mother or father needs assistance from someone else in the early days of a baby’s life it must be provided sensitively to avoid it affecting the bonding process.

● Parents may have support needs that are not related to their impairment, illness or addiction. For example, they may need information, advice and advocacy relating to housing, benefit, debts, immigration status or their children’s schooling.

● Parents appreciate help with activities for their children – either with or without their parents – such as after-school clubs, Saturday groups and outings. These things help to make up for the difficulties that parents have in arranging such activities for their children – because of lack of money or lack of energy or ability.

● Lack of suitable help when needed by parents means that children and young people have to take on inappropriate caring roles.

● It is important to children and their parents that they establish long-term relationships with support workers so that they can develop confidence and trust in services.

Further reading

● Resource Guide 9: Working together to support disabled parents

● Knowledge Review 11: Supporting disabled parents and parents with additional support needs

● Research Briefing 29: Black and minority ethnic parents with mental health problems and their children

● The Disabled Parents Network

● Disability, Pregnancy and Parenting International

RESEARCH ABSTRACTS: PARENTS WITH DISABILITIES

Authors AMES E L, FRASER C, TALBOT L

Title Vulnerable children in families affected by parental mental illness: the role of theory in programme development

Reference Vulnerable Children and Youth Studies, 2(2), August 2007, pp142-153

Abstract People who experience mental illness often undertake parenting duties. Although this group of parents can parent well, they often experience challenges that are associated with adverse impacts upon their children’s mental health. There is no robust body of evidence to indicate which interventions are most effective in promoting positive outcomes. The authors argue that, in this context, theory and the use of theoretical models are advantageous for practitioners to increase the effectiveness of interventions. This paper presents an analysis of the explicitly stated theoretical models used to guide published evaluations targeting this vulnerable group of children and young people.

Authors YOUNG Sadie, HAWKINS Tim

Title Special parenting and the combined skills model

Reference Journal of Applied Research in Intellectual Disabilities, 19(4), December 2006, pp346-355

Abstract The Exeter Child and Special Parenting Service provides flexible assessment, long-term domiciliary support and home-based teaching to intellectually disabled parents. It provides key co-ordination between the learning disability service and the children’s service with focused parenting assessments, where issues of childcare and protection proceedings arise. This article evaluates the child and special parenting service by examining the views of the recipient parents and the professionals who had referred to the service. A high level of consumer satisfaction was found and assessment reports were highly rated. The service is seen to help prevent family breakdown, to meet user needs and to be supportive and non-threatening. The combined skills model proposes a small, specialised service that acts as a linchpin for complex cases that require skills from both children’s and learning disability workers.

Authors MCGAW Sue, NEWMAN Tony

Title What works for parents with learning disabilities?

Publisher Barnardo’s, 2005

Abstract This report is a review of what we know about the most effective ways of providing support. It draws on empirical evidence and research to establish a knowledge base for practitioners and those developing services. The report falls into six parts: a general discussion about learning disability and parenting why parents with learning disabilities are of concern to social care services ways of assessing families ways of intervening what is known about effectiveness and current service issues.

This article was published in the 6 November 2008 edition of Community Care under the headline “Supporting parents with additional needs”