Support for fathers of learning disabled children

Research into the positive roles that fathers of children with learning disabilities can provide is explored by Nick Gore

The Research

Title: Recognising Fathers: Understanding the issues faced by fathers of children with a learning disability

Institution: Foundation for People with Learning Disabilities, 2006

Objectives

Challenges faced by parents raising a child with learning disabilities have long been acknowledged, but research in this area has typically focused on the needs and reactions of mothers, with fathers included, at best, as a sub-sample.

When studied in this way, mothers have generally been identified as the primary caregiver and person most likely to experience negative emotional reactions (Baker-Ericzen, Brookman-Frazee & Stahmer, 2005). Some exceptions have, however, been found, with fathers of children with learning disabilities also experiencing high rates of depression or stress.

More recently, the specific experiences of fathers in these families have been highlighted in detail, through Recognising Fathers, a national survey of fathers of children with learning disabilities, published by the Foundation for People with Learning Disabilities (2009). This built on an earlier qualitative study led by the same organisation in 2006 – Recognising Fathers: Understanding the issues faced by fathers of children with a learning disability. As well as countering the marginalisation of fathers in prior research, the qualitative study set out to demonstrate the positive roles that fathers may provide to a child with learning disabilities.

The 2006 study consisted of 21 in-depth interviews completed with fathers of children with a learning disability (aged up to 11) with questions about the family, employment, support networks and experiences of services. Fathers were selected using a matrix of characteristics that aimed to ensure representation of a range of social, economic and cultural backgrounds. The sample included fathers of children with a variety of learning disability diagnoses and support needs.

Findings

Two-thirds of fathers had experienced emotional difficulties in relation to parenting, with some reported as being under constant stress and others experiencing physical health problems as a consequence.

Although this was not the case for all fathers, few had sought support from a health professional. Factors relating to stress included the impact of receiving a diagnosis confirming the child’s disability, concerns for future provision of care and tensions regarding fathers’ relationships with their child and partner.

Although many participants were initially bewildered by entering a “world of disability”, all expressed a strong commitment to supporting their family. This was often driven by acceptance of the child’s needs; taking a problem-solving approach with their spouse and the development of a genuinely close relationship with their child. In addition, some fathers reported positive emotional reactions that arose from caring for their child and challenging past prejudices about disability.

All but one of the fathers had high levels of daily involvement with their child. Although many suggested that their partner maintained primary responsibility for child-care, fathers were found to contribute to many hands-on support tasks. As well as completing domestic and personal care activities, fathers described taking on roles in advocacy to secure services and ensure their child’s inclusion in the community.

Fathers also attributed great importance to developing a nurturing relationship with their child through leisure activities and actively encouraging their education and learning. Specifically, it was suggested that fathers may play an important and influential role in supporting communication strategies and programmes for children with disabilities.

Issues relating to employment and the challenge of achieving a work-home balance were among fathers’ biggest concerns. For many, a change in priorities since the birth of their child meant that they endeavoured to be at home more often. This often entailed juggling competing demands and sometimes making difficult work choices (staying in a non-preferred job, cutting overtime, changing work structure or role).

With the exception of one participant, all fathers had told their employer that they had a child with a learning disability. Some felt that it had been helpful to share this with others, though most did not want to be perceived as receiving special treatment regarding work performance.

The importance of having an understanding employer who offered flexibility (regarding time off and working patterns) was highly valued, though not experienced by all. Many fathers found initially supportive employers to become less accommodating over time and few were made explicitly aware of the rights of fathers with a disabled child at work.

Fathers often found it difficult to consider personal support needs and felt supported, so long as their child and partner were cared for. Several fathers described being supported by their partner but others, who wanted to appear emotionally strong, felt unable to communicate anxieties in this way.

Less than half of the sample received significant support from their extended family, often due to family members’ own support needs or attitude to disability. Similarly, few fathers cited friends as a source of emotional or practical support and many were frustrated by close friends’ lack of understanding or appreciation. This marked a contrast to the supportive friendships female partners often enjoyed. Some fathers did, however, value opportunities to engage with friends without the need to discuss their child.

Some fathers valued opportunities to meet other parents of children with learning disabilities. However, those who had attended parenting groups noted that these often comprised mothers, and few were aware of father-specific groups.

Several of the above issues were reflected in interactions with professionals and services. Though fathers evidently committed to attending meetings, demands of their employment and inflexibility in providing appointments often made this impossible.

During meetings with professionals, many fathers suggested that professionals maintained gender stereotypes, directing questions towards their partner and prioritising the needs of mothers. Although some fathers felt equally included in meetings, this often resulted from particular efforts to prevent them being pushed out.

On occasion, participants reported being explicitly thanked and respected for attending meetings, particularly by professionals who were good negotiators and highly organised. Ultimately, fathers expressed a need to be valued as an expert on their own child and wanted to work in partnership with professionals.

Conclusion

As an awareness-raising exercise, the study could prove powerful. Consistent with the authors’ original aims, the significant contributions some fathers make to the well-being of children with disabilities, and the family as a whole, are clearly documented.

Further, the responsiveness of professionals and services to support and value fathers is shown often to be lacking. The study does not simply suggest fathers have needs and roles too, but makes explicit how these may be quite distinct from those of mothers.

What the study does not do is explain why some fathers have been able to respond so positively to a challenging situation and why others, in similar situations, are do not. The authors did, however, suggest that coming to terms with a child’s disability was of importance. Interestingly, there are now additional findings in the literature that also highlight the influence of psychological acceptance for fathering outcomes (see MacDonald, Hastings & Fitzsimons, 2010).

Though beyond the scope of the current study, some future research questions might also shed further light on factors relating to positive fathering. This may include greater comparison of fathering contexts (including fathers of adopted, step or foster children and fathers who have a learning disability) and particular issues faced by fathers of children with additional complex needs and those who display challenging behaviours.

Nick Gore is a clinical psychologist and lecturer in learning disability based at the Tizard Centre, University of Kent.

Recognising Fathers, a national survey of 250 fathers of children with learning disabilities in 2009, found

● Nearly half of fathers felt they would like to spend more time with their child but work prevented them from doing so.

● More than 50% of fathers felt they did not receive emotional or practical support from their extended families.

● There are limited opportunities for fathers to have informal contact with practitioners supporting their child.

● Fathers experience a lack of support and poor involvement at the time of diagnosis.

● Fathers emphasised the importance of being recognised and respected by practitioners for what they contribute and being included in discussions and decision-making.

IMPLICATIONS for PRACTICE

Children’s services and trusts

● Should establish standards for involving fathers at key stages in children’s’ lives and appoint local fathers’ champions

● Carers’ assessments and the common assessment framework should explicitly recognise fathers’ needs.

Practitioners

● Be mindful of fathers’ work commitments, and reflect this when organising appointments.

● Explicitly recognise fathers’ contributions in meetings and respect their expertise.

● Recognise that processes of coming to terms with the child’s needs may be different for fathers and mothers.

● Be aware of potential sources of emotional, financial and employment support for fathers and signpost wherever possible.

References and Further Reading

Recognising Fathers – Understanding the issues faced by fathers of children with a learning disability, Foundation for People with Learning Disabilities, 2006

Recognising Fathers: A national survey of fathers who have children with learning disabilities, Foundation for People with Learning Disabilities, 2009

Baker-Ericzen, M J, Brookman-Frazee L et al, 2005, “Stress levels and adaptability in parents of toddlers with and without autism spectrum disorders”, Research And Practice For Persons With Severe Disabilities 30(4).

MacDonald E E, Hastings R P, and Fitzsimons E, 2010, “Psychological acceptance mediates the impact of the behaviour problems of children with intellectual disability on fathers’ psychological adjustment”, Journal of Applied Research in Intellectual Disabilities 23.

Ricci L A and Hodapp R M, 2003, “Fathers of children with Down’s syndrome versus other types of intellectual disability: perceptions, stress and involvement”, Journal of Intellectual Disability Research 47.

Trute B, Hiebert-Murphy D et al, 2007, “Parental appraisal of the family impact of childhood developmental disability: Times of sadness and times of joy”, Journal Of Intellectual & Developmental Disability 32.

Woolfson L, 2004, “Family well-being and disabled children: A psychological model of disability-related child behaviour problems”, British Journal of Health Psychology 9