Setting the scene
There are many ways in which research has shown that fathers are important to their children. Positive paternal involvement is associated with a range of positive outcomes for children, including better peer relationships, fewer behavioural problems, greater capacity for empathy, higher self-esteem and greater life satisfaction.
1 Similarly, low involvement and negative fathering are associated with negative outcomes. 2
Evidence suggests that British fathers are becoming more involved in active parenting than in previous decades.
3 ,4, 5 However, a hugely unlevel playing field between the sexes in the workplace remains. In most families with children, fathers are the main or sole earners, and while female employment has been increasing, mothers often take jobs that will fit in around family life, but are poorly paid and offer limited career development prospects. 6, 7, 8
The gender gap is further encouraged by a parental leave system that reinforces the mother-as-carer model,
8, 9 and public services that are ‘father-blind’. 10, 11, 12 Within this context, fathers of children with disabilities, including brain injuries and brain-related neurological conditions, may struggle to find a voice.
The problems fathers face
Dealing with the diagnosis
Fathers’ reactions to their child’s diagnosis are generally intense.
13, 14 It is common for fathers to talk at later stages about their children with disabilities in positive terms, but they often report experiencing a range of emotions around the time of the diagnosis, including grief, trauma, guilt, denial, feelings of isolation, and a loss of expectations in relation to both their own role as fathers and family life as a whole. 15 Fathers’ (and mothers’) experiences relating to diagnosis have been likened to grieving for the ‘imagined’ baby. 16
Fathers may view the diagnosis as a crisis. They are often concerned about the costs of providing for the child and whether he/she will be able to support themselves in adulthood.
18 The timing of, and background to diagnosis can vary considerably, and fathers’ reactions differ accordingly. Some children never receive a diagnosis, but either way, most fathers will undergo a process of adjustment that is turbulent and longlasting. 14, 18 Fathers may pass through successive periods of disintegration (characterised by shock, denial and emotional disorganisation), adjustment (during which they partly accept and partly deny the existence of the disability), and reintegration or mature adaptation (during which they begin to function more effectively and realistically). 17
For some fathers, having a child diagnosed with a disability may help them move away from ‘masculine’ values such as competitiveness and achievement, towards the adoption of more ‘feminine’ attributes like tolerance and patience.
19
Juggling work and caring responsibilities
Families of children with disabilities are generally financially worse off than those with non-disabled children, for a variety of reasons, including the additional costs of childcare and equipment, and reduced earning potential.
20, 21, 22 For some fathers, this helps push them into focusing on earning, while others take a step back from their role as family provider. 23
Some researchers have suggested that fathers may use work as a means of escape
17 but there is also evidence of fathers being highly involved in dayto- day caring, and of reducing or changing their work patterns in order to allow this – even if it results in reduced financial security. 24
Research suggests that employed mothers and fathers of children with disabilities can benefit greatly from well-publicised formal policies, such as entitlement to emergency leave for family reasons, and more informal factors, such as supportive attitudes from managers, and improved support around accessing childcare.
25
Coping with everyday stresses
Fathers of children with disabilities may be especially affected by feelings of inferiority and because they are often afraid of engaging in roughhouse play, they may have fewer concrete reminders of their own value and competence. 17
Key stressors for both mothers and fathers of children with disabilities include uncertainty about how best to meet the child’s needs; the child’s limitations and how they will develop; their education; how accepted they will be socially; where to go for practical and emotional support; and the child’s capacity for happiness. 26, 27 Fathers’ stress has been found to relate more to their child’s disposition; their own level of attachment to the child; the need to spend time with their spouse; and their ability to respond financially to the child’s needs. They may take a more ‘macro’ view of family life than mothers, and may want their children to be thought of, as much as possible, as ‘normal’. 27
Fathers’ own health may suffer 24 and stress may increase as the child ages. The transition to adulthood is one of the most taxing phases for families of children with disabilities. 28
For fathers, as well as for mothers, the quality of partner relationships is central to life satisfaction. 29 Studies have found that fathers may be more reluctant to seek emotional support than mothers, 27 and that their social networks may provide less support, with the result that fathers may rely mainly, or solely, on their partner for emotional support. 26 Some fathers may also seek support from other family members or friends, 13, 19 and satisfaction with social support (not including the marital relationship) has been found to be associated with increased parenting efficacy in fathers of children with a disability. 28
Some fathers of children with disabilities may bury themselves in work as a way of coping with the challenges they face. 27 Fathers report that being able to work is helpful, not just in terms of allowing them to fulfil a ‘provider’function, but also because work – for mothers and fathers - can be a source of satisfaction and self-esteem. 29, 30 However, many fathers want to spend less time at work and more with the children. 26
Couple relationships
Many studies have suggested that families of children with disabilities experience higher levels of marital conflict than equivalent families with non-disabled children, although some studies report no such differences. Similarly, some studies find higher rates of divorce among families of children with disabilities, while others, including some where researchers have controlled for social class, have not. 17
Evidence suggests that the strain of having a child with a disability can help break a relationship, but can also make couples stronger. 19 If partners are unhappy with role divisions, this can create relationship conflict. 28
Some fathers report giving more priority to family life as a result of having a child with disabilities. 27 Informal social support received from partners, family and friends can be a major source of strength for both mothers and fathers – and professional support can also reduce familial stress, and general life stress for fathers. 17 Cohesive and harmonious home environments are linked to a range of positive outcomes in children with disabilities. 28
What support do fathers receive?
Research suggests that current provision for families of children with disabilities all too often ignores or dismisses fathers. 17, 26 With the odd exception, services generally regard fathers as of marginal interest and in some cases, professionals are profoundly insensitive to fathers’ needs and feelings, for example when ‘breaking the news’ about their child’s condition. 31 In a major study of fathers of children with learning disabilities, only a quarter (27%) of respondents reported feeling supported at the time of diagnosis and many fathers felt services were focused on mothers and the idea of there being one stay-at-home parent (usually the mother) doing all the caring. 24
This lack of focus on fathers matters because:
• When fathers are dismissed by professionals, this contributes substantially to their alienation from their partners and/or children. 13
• The failure to recognise that fathers are emotionally affected by the birth of a child with disabilities deprives them of useful help and support, but also carries the implicit message that they do not matter; something which may have adverse affects on other family members. 17
• Studies show that fathers who are acknowledged and engaged with by professionals – and provided with outcome-oriented activities or programmes - are more likely to become a positive resource within families of children with disabilities. Fathers using groups which provide social support have reported reduced levels of stress and depression, and counselling – for fathers, for their partners, and for couples - can be beneficial. 19
• Fathers directly provided with information so they can share the role of ‘expert’ with their child’s mother can facilitate their child’s development and be a better support to the mother; when programmes actively involve fathers of children with disabilities, they can increase father-child interaction at home, thus enhancing father-child attachment and contributing to the child’s development. 20
How could services for fathers be improved?
There are several key ways in which fathers would like to be better supported. These include:
• Better information, including clinical information but also information about things like the benefits system and the costs of specialist equipment. 26
• Having someone to talk to from outside their immediate circle of family and friends. Support groups can be helpful in this respect. 26
• Having a flexible employer and access to good quality respite care. 26 In many cases, fathers have limited knowledge about their rights; few receive any advice from employers or advice workers about how to balance their paid employment and caring responsibilities; and employers may regard women as the main carers within families.
Fathers often feel unsupported by public services, which they feel overlook them – even when they are the primary carer or share that responsibility with the mother. Many services operate during ‘normal’ working hours and fathers have to take time off work to attend meetings, when they do, meetings are often delivered in such a way as to suggest that only mothers need attend and that fathers are unlikely to make a valuable contribution. 24 Fathers may find it helpful to have a single point of contact, like a ‘key worker’, to give them advice on their child’s welfare, education and health, 26 but they see services such as schools, playgroups and clinics as ‘women-only’ spaces, and report that the predominantly female staff appear to be less comfortable engaging with fathers than with mothers. 24
Research shows that services aiming to increase paternal participation must employ staff who believe fathers are important, who expect them to be involved, and who treat them as equal parents. 20 Appropriately trained and motivated practitioners who value fathers’ importance – to children, and to the children’s mothers, as well as for fathers’ own sake – can turn their understanding into tangible increases in father-recruitment in relatively simple ways. 17, 24, 32 Fathers are almost three times as likely to engage with parenting support/education when the service is ‘mature’ in its engagement with men – which involves not just changes in practice, but also paradigmatic shifts in thinking by the whole team. 33
By recognising individual families’ coping strategies, professionals can better support them. Parents can benefit from having a ‘key worker’ who takes responsibility for collaborating with professionals from a range of services. Parent counselling can also bring benefits, as can services that teach parents coping strategies including self-praise, decision-making, communication skills, and social networking skills. 34
Support groups for particular disabilities or conditions, including peer-topeer interaction, can provide opportunities for fathers to talk and share with others outside the family, some fathers may also value opportunities to help others in similar situations and/or to lobby for better services. Professionalsupport and interactive support groups may be particularly useful for nonresident fathers, who may suffer profound isolation.
The full report, ‘Improving support for fathers of children with neurological conditions’, Dr. Jeremy Davies, 2010, is available from the Research and Education Department at Cerebra on request.
References
1
Pleck, J and Masciadrelli, B (2004) ‘Paternal involvement by US residential fathers: levels, sources and consequences’ in M Lamb (ed) The role of the father in child development (4th edition) Hoboken, NJ: John Wiley and Sons
2
Flouri, E (2005) Fathering and child outcomes. Chichester: John Wiley and Sons
3
O’Brien, M. (2004). Shared Caring: bringing fathers into the frame. London: Equal Opportunities Commission. Available at http://www.eoc.org.uk/PDF/shared_caring_wp18. pdf
4
Smeaton, D and Marsh, A (2006) Maternity and paternity rights and benefits: survey of parents 2005; Employment Relations Research Series No. 50. Department of Trade and Industry
5
Equalities and Human Rights Commission (2009) Working better: meeting the needs of families, workers and employers in the 21st century. London: EHRC
6
Dermott, E (2006) The effect of fatherhood on men’s employment. Swindon: ESRC
7
Woodroffe, J (2009) Not having it all: How motherhood reduces women’s pay and employment prospects. London: Fawcett Society
8
EHRC, 2009
9
Fatherhood Institute (2009) Supporting families and relationships through parental leave. Published online at http://www.fatherhoodinstitute.org/index.php?id=0&cID=960
10
Page, J, Whitting, G and McLean, C (2007) A review of how fathers can be better recognised and supported through DCSF policy. London: GHK Consulting/DCSF
11
Burgess, A (2005) ‘Fathers and public services’ in K Stanley (ed) Daddy dearest: active fatherhood and public policy. London: Institute for Public Policy Research
12
Ghate, D, Shaw, C and Hazel, N. (2000) Fathers and family centres: engaging fathers in preventative services, York: Joseph Rowntree Foundation
13
Herbert, E and Carpenter, B (1994) Fathers – the secondary partners: professional perceptions and fathers’ reflections. Children and Society 8 (1): 31-4
14 Hornby, G (1992) A review of fathers’ accounts of their experiences of parenting children with disabilities. Disability, Handicap and Society 7 (4): 363-37
15 Social Care Institute for Excellence (2005) Being a father to a child with disabilities: issues and what helps. London: SCIE
16 Green, S (2007). “We’re tired, not sad”: benefits and burdens of mothering a child with a disability. Social Science & Medicine, 64, 150-163
17 Lamb, M and Laumann-Billings, L (1997) ‘Fathers of children with special needs’ in M Lamb (ed) The role of the father in child development (3rd edition) New York: John Wiley and Sons
18 Harrison, J, Henderson, M and Leonard, R (2007) Different dads: fathers’ stories of parenting disabled children. London: Jessica Kingsley
19 Towers, C and Swift, P (2007) Recognising fathers: understanding the issues faced by fathers of children with a learning disability. London: Foundation for People with Learning Disabilities
20 McConkey, R, Slevin, E and Barr, O (2004) Audit of Learning Disability in Northern Ireland Final report. University of Ulster
21 Sharma, N (2002) Still missing out? Ending poverty and social exclusion: messages to government from families with disabled children. Ilford, UK: Barnardos
22 Gray, D (2003) Gender and coping: the parents of children with high functioning autism. Social Science and Medicine 56: 631-642
23 Einam, M. and Cuskelly, M. (2002) Paid employment of mothers and fathers of an adult child with multiple disabilities Journal of Intellectual Disability Research 46 (2), pp.158-167
24 Towers, C (2009) Recognising Fathers: a national survey of fathers who have children with learning disabilities. London: Foundation for People with Learning Disabilities
25 Lewis, S, Kagan, C and Heaton, P (2000) Managing work-family diversity for parents of disabled children. Personnel Review 29 (3): 417-430
26 SCIE, 2005
27
Pelchat, D, Levert, M-J, Bourgeois-Guerin, V (2009) How do mothers and fathers who have a child with a disability describe their adaption/transformation process? Journal of Child Health Care 13 (3) 239-259
28 Glenn, F (2007) Growing together or drifting apart? Children with disabilities and their parents’ relationship. London: One Plus One
29 Sloper, P, Knussen, C, Turner, S and Cunningham, C (1991) Factors related to stress and satisfaction with life in families of children with Down’s Syndrome. Journal of Child Psychology and Psychiatry 32 (4): 655-676
30 Kagan, C, Lewis, S and Heaton, P (1998) Caring to work: accounts of working parents of disabled children. York: Joseph Rowntree Foundation
31 Carpenter, B (2002) Inside the portrait of a family: the importance of fatherhood. Early Child Development and Care 172 (2): 195-202
32 DCSF (2009) Guide to developing a father-inclusive workforce. Online document available at http://www.dcsf.gov.uk/everychildmatters/strategy/parents/pip/PIPrkfatherinclusiveservices/ PIPfatherinclusiveservices/
33 Burgess, A (2009) Fathers and parenting interventions: what works? Fatherhood Institute: available online at http://www.fatherhoodinstitute.org/index.php?prodID=47
34 Harris, H (2008) Meeting the needs of disabled children and their families: some messages from the literature. Child Care in Practice 14 (4): 355-369
35 Ware, J and Raval, H (2007) A qualitative investigation of fathers’ experiences of looking after a child with a life-limiting illness, in process and in retrospect. Clinical Child Psychology and Psychiatry 12 (4): 549-565
This information is not meant to replace the advice of any physician or qualified health professional. The information provided by Cerebra is for information purposes only and is not a substitute for medical advice or treatment for any medical condition. You should promptly seek professional medical assistance if you have concerns regarding any health issue.