Fathers 'Care' Too: The Impact of Family Relationships on the Experience of Work for Parents of Disabled Children

by Katharine Venter
University of Leicester

Sociological Research Online, 16 (3) 1

Received: 7 Feb 2011     Accepted: 15 Aug 2011    Published: 31 Aug 2011


There is a wealth of literature exploring the impact of parenthood on employment. However, this literature largely overlooks the experiences of parents of children with disabilities, for whom combining the care of their child with employment poses considerable challenges. Within the limited literature on these parents, the focus is on primary carers who are predominantly women. Consequently, the implications for fathers' employment experiences of parenting children with disabilities are largely invisible. Based on research with mothers and fathers this paper argues that being the parent of a child with disabilities impacts significantly on the characteristics of both parents' employment and on their experience of employment. This depends on the nature of parents' roles in care and is reflective of broader patterns of gender relationships within the family. Employment decisions take place within an ongoing parental dialogue that reflects broader conceptualisations of gender relations within the family and in the workplace.

Keywords: Carers, Children's Chronic Illness, Disability, Employment, Family, Gender, Parenting


1.1 'Care' has been argued to be an important area of investigation (McLaughlin 2006). However, 'care' as an area of enquiry has also been criticised within disability studies because of its focus on the carer which is argued to reduce disabled people into passive recipients of 'care' (Sheldon 1999). However, if we ignore the significance of 'care' as a concept then our understanding of a variety of areas of social life is constrained. This article explores how parents' care for a disabled child impacts upon their engagement in, and experiences of, paid employment. This is important for a number of reasons. Firstly, parents of disabled children are ignored by the bulk of literature on work life balance. Many such parents wish to engage in employment, and believe there are benefits in doing so, but find themselves unable to combine this with their caring responsibilities (Stiell et al. 2006). We need to understand this 'choice' better. Secondly, research on parent carers largely focuses on mothers, as they are usually the primary carer. Consequently, little is known about the nature and extent to which fathers' experiences of employment are affected by parenting a disabled child.

1.2 This article is based on a small-scale exploratory study of 10 families, which forms the first stage of a larger research project. Based on qualitative interviews with nine mothers and six fathers this paper explores the way in which combining employment with parenting a disabled child is experienced by both parents and suggests that whilst there may be common characteristics and issues faced by those who spend the greatest proportion of their time on care work, there are also implications for others who 'care'.

Literature Review

2.1 There is a wealth of literature exploring the impact of parenthood on participation in, and experiences of, employment. Becoming a parent, particularly a mother, continues to have a significant impact on labour force participation, on career paths and progression, on work-family balance issues and the potential stresses that tension between the two can generate (e.g. Buchmann et al. 2010; Craig & Sawrikar 2009; Den Dulk & De Ruijter 2008; Ransford et al. 2008). Although there has been some redistribution of childcare from mothers to fathers as women increasingly participate in the labour force (Gershuny & Sulivan 2001), fathers' long hours of work in the UK appears to significantly constrain their involvement in childcare (Gray 2006). Despite the continuing importance of an economic aspect to fatherhood there is nevertheless evidence of diverse models of fatherhood and the growth of "new" fatherhood within which fathers give significant importance to their relationships with their children and their involvement in their care (Queniart 2004).

2.2 Much of the existing research on parenthood and employment assumes that children follow the usual trajectories towards independence and adulthood. For the parents of disabled children, this assumption is often inaccurate as periods of dependence may continue and care needs may be both life long and unpredictable (Stiell et al. 2006).

2.3 With the exception of a small number of studies (e.g. Arksey 2003, 2007; Lewis et al. 1999; Stiell et al. 2006) parents of disabled children are generally overlooked within the literature on parenting and employment. We do know that having a disabled child impacts on mothers' participation in employment (Porterfield 2002). Mothers of children with disabilities are less likely to be in any form of employment than mothers of children without disabilities and those who are employed are more likely to work part-time than mothers generally (Gordon et al. 2007). More highly educated mothers have been shown to be more strongly attached to the labour market and therefore less likely to leave it when they have children (Debacker 2008). This also holds true for mothers of children with disabilities who are more likely to be in employment the more highly educated they are, though remain considerably less likely to be in full time employment than mothers of children without disabilities (Carmichael et al. 2008; Porterfield 2002). Access to appropriate care services can militate against dropping out of the labour market, reducing hours or changing careers (Derigne & Porterfield 2010, Rosenzweig et al. 2008). Deep rooted ideological and cultural assumptions pose barriers to work for mothers as the organisation of services and health provision socialise mothers into an intensive care giving role, often necessitating a reduced role in, or withdrawal from, the labour market. (Timmermans2007).

2.4 Stiell et al. (2006) explored the experience of primary carers who sought to combine their caring responsibilities with employment. Based on the 2001 census and qualitative interviews with carers of disabled children, Stiell et al. found that the demands on parent carers are more intense and longer lasting than those faced by parents generally. They suggest carers faced numerous barriers to work, and of those in their sample not currently employed more than 60% wished to be. Similar patterns emerge in other countries. For example, Gordon et al. (2007), using the Australian Time Use Survey, found that 54% of non-working mothers of children with disabilities wanted to work. Lewis et al. (1999, 2000) and Stiell et al. (2006) suggest that career paths, progression, work hours and access to training are all affected by being the carer of a disabled child.

2.5 Parenting chronically ill or disabled children has been shown to place enormous stress on parents (Dyson 1997, Cohen 1999) and marital problems and divorce rates are higher than average amongst this group (Pelchat et al. 2007). Consequently, children with disabilities are more likely to grow up in single parent families than are other children (Cohen & Petrescu-Prahova 2006) and parental care may take place across more than one household (Cohen & Petrescu-Prahova 2006).

2.6 By virtue of mothers being most likely to be the primary carer (Armstrong & Armstrong 2004; Lee &Porteous 2002; Yantzi & Rosenberg 2008) and owing to ideological assumptions associating care with women, mothers are more closely scrutinised by medical and health care professions and by academics (Ryan & Runswick-Cole 2008). Consequently, much of this small but growing body of literature on combining parenting a child with disabilities with employment focuses on mothers as primary carers. Research on primary carers provides important information on the joys and stresses of care work (Gerhardt et al. 2003), on the impact on marital relationships (Katz 2002; Quittner et al. 1998) and on the effects on siblings (Stalker & Connors 2004; Timmermans & Freidin 2007) and on parents' own physical and mental health (Pelchat et al. 2007). We know that mothers of ill or disabled children can experience what Young et al. (2002) term an 'obligation for proximity' and that illness intensifies children's vulnerability and dependency (James 1998) thus requiring a greater time commitment from carers. Young et al. (2002) suggest that mothers of disabled children experience effects of chronic illness usually attributed to the patient such as 'biographical disruption' (Bury 1991) and grieving for their former selves.

2.7 The distinction has been made between caring for and caring about (Grant & Ramcharan 2001; Gregory 2005; Ytterhus et al. 2008). Caring for refers to the practicalities of care and the physical activities of caring for another person. Caring about refers to the emotional aspects of care about the individual's 'being'. This can be related to Himmelweit's (1995) dichotomy between childcare 'work' that could feasibly be delegated elsewhere and 'relational' aspects of childcare that could not. The existing focus on the primary carer reflects the policy conception of a carer often defined in terms of the hours spent on care 'work'. Consequently care is often conceived of as referring to the physical activities that are required to get the dependent individual through the day, resulting in an interest in those who spend the most hours engaged in accomplishing these activities of caring for their child. However this conception neglects the experiences of parents who may not be the primary carer but who nevertheless play an important role in the care of their child's condition and in the more emotional and 'relational' aspects of caring about their child.

2.8 The focus on mothers has meant that the implications for fathers' employment experiences of parenting children with disabilities are largely invisible. A small number of studies explore the experiences of fathers parenting chronically ill or disabled children, for example children with heart disease (Clark & Miles 1999), childhood cancers (Chesler & Parry 2001; Ogg 1997) and juvenile arthritis (McNeil 2004, 2007). Exploring fathers' beliefs about masculinity and fatherhood in the context of parenting a chronically ill child, McNeil (2004, 2007) found that a child's chronic illness became the catalyst for more meaningful involvement by fathers in their child's care. McNeil's study identified many of the traditional features of fathers as the protector, the provider, the disciplinarian and fathers' perception of a need to be strong for their children and their spouse. However, alongside these traditional portrayals of fatherhood there also emerged less traditionally masculine behaviours. These fathers were seen to embrace a tenderness with their children. Some identified their high emotional involvement and care giving roles as aspects they had been fortunate to have, believing few men to have had these opportunities. Based on this research McNeil argues that it should not be assumed that fathers are uninvolved and suggests that clinicians need to bear this in mind.

2.9 This more complex portrayal of fatherhood and involved father emerges in other studies of fathers of chronically ill children. Ogg's research (1997) demonstrated that fathers of children with cancer were actively involved in their child's hospital care. Similarly Chesler and Parry's (2001) work highlights the significant emotional involvement of fathers of children with cancer existing alongside traditional perceptions of fatherhood.

2.10 These studies provide an important insight into the experiences of fathers and question traditional stereotypes about fatherhood and masculinity within these stressful family contexts. Based on this work these authors call for greater exploration of fathers' involvement in the care of their children and for the recognition of their involvement by health care providers. The focus of much existing work has been on the implications of parenting for identity and masculinity and the nature of these challenges in combining work and care remains under explored. The research reported in this paper is very much a response to these calls but argues that this recognition and exploration is needed beyond health care settings in order to gain a more complete understanding of the implications for other areas of social life such as experiences of employment. In samples that explicitly look at the implications of care for employment, where they have included fathers they are often a minority voice, e.g. Stiell et al's. (2006) sample of 29 carers included one father, Woodgate et al. (2008) conducted 21 interviews of which five were with fathers, Timmermans and Freidin (2007) conducted 50 interviews including one with a father and of Rosenzweig et al's. (2008) sample of 60 'parents' of children with emotional and behavioural disabilities, 57 were mothers.


3.1 This research explores the experiences of mothers and fathers in their attempts to combine work and care. The study comprised three stages. The first stage involved gathering parents' views at support sessions run by a parent/carer support network. Based on these views a web survey was developed linked to the support network's website and the research was publicised in the support network newsletter. Fifty-three parents participated in the web survey. From these two stages respondents who agreed to participate in follow up interviews and were available during the period of fieldwork, were recruited for the third stage of qualitative interviews carried out by the author (on which this paper is based). This resulted in 13 qualitative interviews with 15 parents in 10 families. At the request of both parents two couples had joint interviews with their spouses. The data gathered may have been influenced by the dynamics of the interviews as ideas triggered off one parent to another and the interview may have either enabled difficult subjects to be broached or hindered sensitive discussion. Although there is some evidence to suggest that fathers may participate less within joint interview settings (Lewis et al. 2000), in these interviews rich information was obtained from both parents.

3.2 To capture the depth and complexity of parents' experiences a qualitative narrative approach was taken. Parents were asked to 'tell their story' from leaving education, entering employment, to the first signs of their child's illness, through diagnosis to the present. Employment experiences were explored alongside this.

3.3 The present sample contains a variety of family structures, including dual parent, single parent and families where parents had divorced and were either remarried or cohabiting. Amongst the single parent and reconstituted families it was only possible to interview mothers. In each of these instances the mother was the primary carer. The interviews with one parent from these families provide an initial indication of the division of labour within such households though further research is needed.

3.4 Interviews were digitally recorded and transcribed verbatim. Transcripts were thematically analysed and coded to enable an understanding of the broad social context in which parents' experiences take place and in which they give meaning to those experiences (Attride-Stirling 2001). All names and other identifying details have been changed in order to protect individuals' identities.

Findings and Discussion

4.1 Table 1 provides a descriptive background of the 10 families. The table illustrates who was interviewed, the nature of the child's disability, their age at the time of the interview and family and employment arrangements. The table classifies family care arrangements as either traditional (where the mother is primarily responsible for care) or egalitarian (where both parents are fundamentally involved in the care of the child). These categories emerged from respondents' descriptions of the family division of labour and how care tasks were allocated. It is important to explore in future research whether there are additional patterns of care arrangements that emerge in larger samples. The table also provides contextual detail including the presence of siblings. Owing to the specific aims of this paper to focus on the implications of care of disabled children, we do not explore here the implications of parents care of other children.

Table 1. Family Characteristics
* age of child at time of interview in brackets
**joint interview

The impact of caring on participation in employment

4.2 Caring for a child with disabilities had significant consequences for employment participation for many parents in the sample. Parents made decisions about engagement in employment in relation to childcare needs. In each family there were instances where careers, work hours and labour market participation of one or both parents had been affected by the demands of childcare, stimulating broad changes to occupation, employment status and hours of work. Gender relationships within the family had implications in terms of which parents were affected and in what way. For example, some mothers in the sample described themselves first and foremost in terms of their role as a 'mother' and concluded that employment was impossible.

I felt at that point that I needed to concentrate on getting Harry sorted out and getting a diagnosis. You know, at the end of the day he's my priority and he needed all of my time to try and get to the root problem of what was going on with him (Jill –Reconstituted Family)

4.3 Others reduced hours of employment in order to meet the expectations they associated with motherhood.

And you always think "well what if…." what if Beth ends up in hospital again, what if this, what if that. I mean there's always that at the back of your mind because you've always had that and I think that stops you from doing things doesn't it because you think "no I've got to be here with her until she's more able to go out on her own and I'm her mum and that's my job" sort of thing. (Kristy –Reconstituted Family)

4.4 Although women in particular had made significant structural changes in their employment, this was also true of some fathers. Sean for example worked part time three days per week in order to be involved in his son's care.

For me it was a necessity that I had to have time off to see my son and to help him develop... My wife's more than competent to go to the meetings but I wanted to be there as well most of the time to make sure that I'm understanding kind of what the problems are…And I don't mind that responsibility. You know, he's my son and I know that in that respect I'm being a hands-on dad. But, you know, from my perspective and my values it's all I'd expect ... In fact I think that would have hit Penny (wife) if we hadn't done things together, you know, it's just too much. (Sean – Dual Parent Family)

4.5 Other fathers' involvement in care had implications for when and where work took place. Some negotiated more flexible work arrangements.

At that time two days a week was arranging my week so I could work at home and do things that I didn't need to be at work for…when Adrienne's problems became more apparent and I used to take time off for appointments or medications and stuff like that. There were a couple of times that she was in hospital for a week which meant that I was having to stop overnight at the hospital. So obviously went straight from work to hospital, Leigh (wife) would leave, come home and then I'd stay the night there and go to work in the morning... But even then I wasn't getting to work until mid to late morning…So they were good like that in that they've been supportive … you know I'd make up time or use holidays etc so that's worked well. (Ralph – Dual Parent Family)

4.6 Or more flexible hours of work.

I mean in fairness my boss was fairly good in the sense that once it became clear that we were going through processes, you know, and there were lots of appointments, they were flexible in a sense that I sat down and spoke to my director, explained the situation to her and said "look, I'm using all my holiday and I'm running out of holiday and I still need to go to appointments" and we actually negotiated effectively a flexible contract so I could go out, do an appointment and then make the time up - I wasn't officially on flexitime or anything like that but they used to let me go out so long as I made the time up. (Craig –Dual Parent Family)

The invisible impact of care on employment

5.1 In addition to the structural impact identified above, involvement in care also had less visible consequences for work. Even in families where the mother was the primary carer and may have altered her employment to accommodate demands of care, many fathers were nevertheless fundamentally affected at work by parenting a child with disabilities.
It doesn't make for being satisfied with the job because you feel guilty about not being as effective as you could be. I'm that run down….the motivation side of work, leave it and if you're not feeling good and you're tired anyway. So the whole thing is not satisfying, you're not satisfied in the work you do. I feel that I go there and I get a salary and I don't earn it. I pretty much go to work, do my thing, come back. I want to do a good job and so for me I do feel a bit of guilt about going there and doing not as good job as I might. (Ralph – Dual Parent Family)

5.2 In families where both parents played significant (albeit different) roles in the care of their disabled child they both required flexible work arrangements to manage their caring responsibilities. In these families, flexibility is achieved through the intricate juggling of employment and care by and between both parents. Whilst this creates a partnership it means that both parents face the stresses of combining work with their child's additional needs.

I'll get a phone call at work that you're in tears [indicating wife], you know, how it affects work well …if I get a phone call like that in a day it's like I'm worried about it then and I can't think about the work and stuff but it doesn't need you to phone up because something happens and you're in tears about it, you just want to hear my voice, you don't want a solution but I feel like "what can I do from here?" But to me all it's done is kind of made my day more difficult, you know … which changes the way we work as well because you know I'll have a phone call or I go to a meeting if that phone's off it's like "why's the phone not on?" - if I get a call I'm out of here, you know, no matter what. And your priorities do change. (Mike – Dual Parent Family)

5.3 Fathers were affected at a psychological and emotional level.

It's just so difficult to try and work out a routine from week to week… You're not that person who you were prior to having the child….it's just that confidence in yourself, you know, and it's like whilst you've still got these issues going on within your family, within your worries and concerns, it's still difficult to just turn off and to be the person that you used to be. (John - Dual Parent Family)

5.4 For these fathers, family undoubtedly 'intruded' on their working lives. I'd prefer to be in a job which is more of a pressure kind of environment but with all this

that's been going on you kind of lose your way of your work as well if you're not careful. So it's a bit difficult to focus on work, the things that need to be done, because it is… in the grand scale of things it isn't that important. It's important but not urgent, it's important that things get done and where I do work they're very happy with the work I do but I find it difficult to apply myself sometimes with everything else that's going on around me, you know. So that's I suppose the issue I've got at the moment with my work, they're supportive but sometimes I'm not focused because I'm tired, you know, you go to work and you just attend almost, rather than actually getting your head down. (Ralph - Dual Parent Family)

5.5 Experiences such as these indicate how much is overlooked by a focus solely on primary carers. Although these fathers may not have withdrawn from the labour market they were nevertheless fundamentally affected by their involvement in care. By contrast, fathers in families with more traditional care arrangements, who were less involved in their child's care, were able to maintain employment in much the same way that they had prior to having children. For these fathers work could serve to distance them from the stresses of home.

I've always been able to switch on and off from work quite easily. I go to work and leave the house in a morning and then I switch on into work mode. I leave work and I switch out of work mode and that really doesn't make any difference whether I've got the children or not or whether the children have got problems or whatever… Lisa respects the situation when I'm in at work and has almost always been able to sort out any fairly major or minor problems without my help. (Mark – Dual Parent Family)

5.6 Such relationships reflect a more traditional pattern of gender roles within the family whereby mothers took on the responsibility for care leaving fathers in a position to fulfil the traditional masculine norms of full time employment relatively unhindered by family responsibilities.

The nature of care

5.7 We have seen earlier that policy conceptions of care tend to focus on who spends the time undertaking the physical day to day tasks of care. Parents described numerous time consuming day-to-day tasks.

Adrienne doesn't take fluids very well - it normally takes me about 2 hours a day just to get things down her - so that is laborious, boring, I don't like it but it's got to be done every day. (Leigh – Dual Parent Family)

5.8 It is well documented that for many mothers combining work becomes something that must be 'fitted in' around family responsibilities (Buchmann et al. 2000; Venter 2002). For the families in this sample there were simply more demands for work to be fitted around.

I tend to do every Saturday because you're not going to have hospital appointments or anything on a Saturday, and then plus I've got like the grandparents can have them on a Saturday and Mark only has them for a few hours in the morning, and I've been doing every other Thursday at the moment. I mean really I'd like to do something a bit more, a bit different but it's finding something that you can fit in, fit around. (Lisa – Dual Parent Family)

5.9 These tasks clearly limited opportunities to engage in paid work.

I couldn't have had a job because we were always at the hospital, you know, it was either speech and language therapy, you were going to see the OT, he was going to have a scan, he was going to try new medication, going to the psychiatrist or it was assessments for the statement, there were just hundreds. Nobody - and quite rightly - would have given you a job under that, you'd have been a liability. (Caroline – Single Parent Family)
It got to the point where you would take him into school and think "well I won't do anything, I won't go anywhere, I won't go outside the house just in case there's a phone call and I need to go, shoot down and get him"… (Jill – Reconstituted Family)

5.10 Physical care was underpinned by knowledge, confidence and experience to be able to read situations and identify when things were wrong. This tacit knowledge has huge implications for the support and childcare parents utilised.

I can't just use anybody… although he hasn't had a fit for a long time, potentially he could have and usually when he has a fit he stops breathing, so that would be somebody (a) that could deal with that side of it and be happy to do so, but also as he gets older his behaviour is very challenging and he can be very aggressive and he can scream for hours, so it's got to be somebody who would be able to deal with that. And I don't feel that I would want to leave him with anybody to be honest. (Debbie – Reconstituted Family)

I can't just find a childminder like that because they won't give drugs, they don't want children with special needs. So it's slightly different, and she's more at risk of other things, you know, her choking and stuff like that, she's got to be in the right environment. (Leigh – Dual Parent)

5.11 For many 'care' included learning about their child's condition and its treatment so that parents could become their child's advocate.

I was looking on the computer trying to do my own research into what could possibly be his issues…and it's like literally just printing loads of stuff off the computer and taking it to the doctors and saying "well do you think this could be wrong with him" or "what do we do about this" (Jill –Traditional Reconstituted Family)

5.12 And to fight for diagnoses or treatments,

I kept on going back to the health visitor and saying "look I'm worried about this". And I was a single parent at the time and she said "no you're a neurotic mother, go away, there's nothing wrong, they all develop at different stages". And it got to the point where he was two I think and he still wasn't sitting up… And I said "no this isn't on" and so I took him to the doctors and I plonked him down on the floor and I said "this is Harry, he's two years old, he can't sit up" and at that stage literally I'd put him down and he just toppled over. And we were referred for an MRI scan. (Jill – Traditional Reconstituted Family)

5.13 Parents described 'care' as so much more than day-to-day tasks. Many fathers, as well as mothers, are very much involved (often in different ways and to different extents) in both the 'caring for' and the 'relational' aspects of care. In five of the six dual parent families in the sample more egalitarian gender roles were displayed and fathers in these families were fundamentally involved in most aspects of caring for their children. This included attending medical appointments, administering medication, and dealing with unpredictable incidents as they occurred. It also included more relational aspects displayed for example as a concern to help their child to be 'the best that they could be'.

And I don't think that people understand how hard it is having a child like Adrienne in terms of the time it takes, and you could do less I suppose but you wouldn't want to do less for her, you know, she needs every bit of help you can give her and stimulation and we want to do that. I've felt that because I've been working full time all year I've missed out on an awful lot as well. (Ralph –Dual Parent Family)

5.14 It is not useful for our purposes here to debate "how much" they did this and whether this was to the same extent or more or less than mothers. Rather it is useful to document that they are involved in both caring for and about their child and that this has implications for how, when and where paid work took place.

The psychosocial benefits of work

5.15 Despite the stresses of combining paid employment with care, there is the potential for parents of disabled children to gain enormous psychosocial and economic benefits from employment. Employment clearly brings much needed income to families facing costs estimated to be three times the cost of raising other children (Dobson & Middleton 1998). However, mothers in particular suggested that there were important psychosocial reasons for wanting to work.

I want to go to the toilet on my own without somebody falling over in the background, that's a luxury to me. To have a drink without somebody climbing on us is a luxury. To not have to think [about home]…because I'm so busy when I'm there [at work] I can't think about Adrienne too much. (Leigh – Dual Parent Family)

5.16 Work could be a 'respite' from the stresses of home life and a means of avoiding 'burnout' at home.

But I mean like you'd like to go to work because it's the only place you go where you get a rest from everything else that's going on. (Lisa – Dual Parent Family)

5.17 For some work was a means of improving self-esteem, negating social isolation

There's a sense of fulfilment in that you're good at something and you're going there and you're accomplishing something and that in itself makes you feel good about yourself doesn't it, you know, and you're getting out and you're meeting people. (Jill – Reconstituted Family)
and maintaining an identity beyond being the parent of a disabled child.
I couldn't imagine just being…. I can't imagine how say when mums of disabled children just do that because it would drive me bonkers. It would be so easy just to get swept in the whole round of hospital appointments, doctors appointments, going to this place, going to that place and that would send me absolutely batty…. The monotony of it. But alongside of that there's still the issue that I can't put my life on hold because of Ben because he may not always be here and I know people that have done that and they say "how are we ever going to get back into that", you know "who's going to employ us? (Debbie – Reconstituted Family).

5.18 For these reasons work might be considered worthwhile even when it was not financially rewarding

If you're not earning much and you're paying out £25 [childcare] then it's actually costing you to go to work. But I didn't mind that because I still went, it still got me out of the house. (Caroline - Single Parent Family)

Well it's just been a bit of respite I think. Time on my own just to get out and get away. Get a bit of a break...I mean the money has not really been an issue to me, I've not really bothered how much an hour it is or anything because it's just been for me, something for me and not for somebody else. (Kristy – Reconstituted Family)

5.19 Work could also provide an emotionally detached context from which to reflect on the situation at home.

Well I actually did a lot of thinking whilst I was on the checkouts - bad woman, and I would think about situations and I would try and work out what was making him the way he was. (Kate – Egalitarian Dual Parent Family)

The implications of unpredictable care needs for the experience of paid employment

5.20 Family responsibilities are considerably more restricting in families with a disabled child where unpredictable care needs and increased dependency require more flexible employment arrangements. In families with highly differentiated, traditional gender roles, flexibility may be achieved through mothers focusing on caring activities whilst fathers committed themselves to the masculinised norm of full time employment.

It's generally Lisa that does the vast majority of the running around for the children and their diagnosis. For us that's for one or two reasons. One because not necessarily by necessity but our choice it's me that works full-time. Lisa doesn't. She therefore has more time. And two, point blank, she's better at it than I am…she's very good at it, so it has really been Lisa that has done most of the work required to get what our children require. (Mark – Dual Parent Family)

5.21 As a consequence of mothers in traditional roles generating the flexibility to meet care needs their own work preferences were often suppressed. This is illustrated by Jill's comment based on her perceptions of levels of flexibility in different types of jobs.

They [employer] expect you to be there and you can't just say "I've had a phone call, Harry has done this at school, I need to go and get him - oh and by the way tomorrow I've got an appointment at the paediatricians". So I don't know how that is ever going to change - I really don't, unless I change my goals and decide that I work on menial jobs where they're not going to mind as much. I just don't see that I could go into the same kind of jobs that I would like to go into with the flexibility. (Jill –Reconstituted Family)

5.22 The unpredictable nature of care needs was one of the primary factors affecting decisions about engagement in employment. Unpredictable needs affected labour market participation, the occupations that were seen as feasible and the hours of work that were possible. Unpredictable care needs resulted in working with the knowledge that circumstances at home might suddenly change.

Ben is unwell more frequently than your normal child would be and that essentially when he becomes unwell it can be life threatening and there are the constant hospital visits and nobody ever co-ordinates anything and getting interrupted at work, you know, people phoning up for various things. I've had two calls today, one from the respite home that he's gone to, to sort things out, district nurse not being able to do his injection and then a specialist nurse finding out how the injections are going. So I get those interruptions at work. So I've said that I can't turn my mobile off, I have to keep it on and I never know what the call is going to be. (Debbie – Reconstituted Family)

5.23 Mothers described work as a place where they could never 'switch off' from home.

I always have my mobile on - so I'm not even supposed to have mobile phones on…So it's a fight, it's a struggle, I feel guilty - I constantly feel guilty. (Leigh – Dual Parent Family)

5.24 Although full time employment might take many fathers out of the stress of the situation at home and offered a semblance of 'respite', fathers who played an active role in care often experienced similar issues as those described by mothers in terms of never really 'switching off' from home.

There were no end of times that I ended up just taking half a day because you [indicating wife] got to the end of your tether during the day and I had to literally just leave work and come home to sort something out. So work was always a pressure rather than a respite. I mean it was respite in the sense that I was out of the situation but I was always on edge when I was out of the situation. (Craig – Dual Parent Family)

5.25 It was clear that for these fathers home life did intrude on work life in a manner that deviated from traditional norms of the ideal worker. The continual tension between parenting and employment generated instances of exhaustion

I've burned quite a lot of holiday just taking time out to go on these appointments and things like that…it means we can't go away on holiday so easily because I haven't got any holiday left. So I am having to take parental leave, unpaid, if we want to go away. But I'm just exhausted, I need to get away, so we need to take a hit on the money and just do it, you know. (Mike – Dual Parent Family)
and despair or anger
I'm trying to do the best I can, I feel like I'm already struggling to get a grip on my situation and I've got my wife who's coming in from work tired, in tears, stressed out because she's not getting any support…It makes me very angry ... She's in tears because of her home circumstances and she's expected to get on with her job. There's no caring for the staff …Well from my point of view I don't care about them, I care about her you know, I care about the impact on our lives. (Ralph – Dual Parent Family)
Instances such as these suggest that further support whether that is from family, agencies or employers, is crucial. Understanding both parents' experiences makes identifying support needs more possible.

The persistence of gendered perceptions of family roles

6.1 Many fathers identified instances where persisting idealised notions of fathers as the breadwinner with a wife at home caring for the family, impacted on their experiences. Two main features of this emerged from the interviews. Firstly, many fathers suggested that employers expected fathers to be full time, committed workers who put work first and were unimpeded by family circumstances. Secondly, persisting ideological assumptions impacted upon the way in which fathers were willing to portray their family lives in the workplace.
Prior to that they trusted me in kind of whatever I did in terms of my work and I feel like it was on the back of what happened that they felt like their trust for me went because I was putting my kind of efforts elsewhere. (Shaun – Dual Parent Family)

6.2 Mike suggested

Yeah, it's that competitive nature of individuals. I think even whilst trying to be understanding it's like emphasising the fact that you weren't at work for however long and there's just this kind of subtle inference that you've no longer got your heart behind the company. (Mike – Dual Parent Family)

6.3 Although ostensibly family friendly policies were available, it was perceived that employers did not really expect fathers to utilise them.

…It was the flexible working policy where if you'd got a child under the age of 18 who'd got learning disabilities you were entitled up to 18 weeks unpaid leave, it's one of those things that in a very subtle way you're stopped from taking it… suddenly I was an individual asking for my rights about this or that and feeling like I was getting in their way of normal business as well I suppose…So I think I became a problem for them because of the differences in kind of what I needed… (John – Dual Parent Family)

6.4 At times fathers had to discuss home circumstances with their managers, as we have seen earlier, in order to negotiate flexible working arrangements. Nevertheless persisting societal assumptions about gender roles had implications for the ways in which fathers felt able, or felt it necessary, to talk about their family circumstances.

"Oh yeah, you're back at work now are you?" "well yeah, you know, I have had two days a week off looking after my disabled son". You don't end up saying things like that, you know, I'm not going to justify myself for anybody. (Sean – Dual Parent Family)
My boss being a bloke and him having his own problems with his kids I think there's just that kind of immediate brick wall "well I've got my problems you've got yours don't bring them to work and stuff" and I don't know, it's just kind of difficult to talk personally. (Mike - Dual Parent Family)

6.5 Mark explained

I work in a very male predominant environment at work in an engineering company etc etc and men just don't…. certainly the people that I can see, that I frequent with, don't tend to talk about their home life very much and I'm certainly one of those as well. When I'm at work I'm quite happy to talk about work, quite happy to talk about interests, hobbies that I have got but as far as actual home life is concerned and the relationship with my wife or the relationship with children, yes it's not that I won't talk about it but it's certainly not a subject that I bring up, not very often…I mean we have a new Quality Manager … and if I have mentioned to him it's only in passing that my children have got difficulties. I don't see that it's necessary otherwise… I don't feel comfortable talking about it at work…I can't give you a reason why, I'm just not… It's not really me. (Mark – Dual Parent Family)
Thus fathers perpetuated dominant gendered assumptions through an unwillingness to make their caring roles visible, even when the reality for many fathers was that often work was dramatically impacted.

6.6 Mothers by contrast, found it easier to talk about issues in their home lives. This may be because widespread expectations that women have caring responsibilities mean they are already further away from the ideal employee norm. Women do not challenge existing assumptions by discussing the pressures family poses for work, making it more acceptable to discuss their caring role in the workplace.

I worked with somebody else who would take over if I wasn't there, and nobody said, "oh where were you?" (Caroline – Single Parent Family)

I've worked with a very good team who have all known about Ben and have been tremendously supportive. And, you know, we've had the dire situation where I've been in the middle of something and I've got to go … I've said "right I'm off to ITU now my son is waiting" and it's almost surreal, you know, and your colleagues just pick up and take on. (Debbie – Reconstituted Family)

Embracing parenthood

7.1 Although many aspects of life were a struggle some parents suggested that despite their circumstances their lives were not a 'tragedy'. For some, what were initially very difficult experiences eventually brought about positive changes to work and career.
Just our whole outlook and our whole way of doing things has changed. But in the first instance that wasn't a positive change; it was a highly reactive change because it was the only way that we could actually get control of the situation that we were in. So it didn't start off positive but it's ended up enormously positive because of the things that we've learnt on that journey. (Craig –Dual Parent Family)

7.2 Some fathers suggested that this involvement in care gave them privileged access to an aspect of social life that they felt many men never had:

I don't know, it's that difference of kind of blokes being blokes and talking arrogantly about this or that and I can't stand that now but I've kind of had an experience of understanding a whole new world that they're not aware of . (Sean –Dual Parent Family)

Discussion and Conclusion

8.1 In families with more traditional gender arrangements mothers' role as primary carer enabled fathers to conform more closely to masculinised norms of an ideal employee in full time employment, relatively unimpeded by family circumstances despite the additional care needs of their children. In this context mothers undertook a second shift (Hochschild 2000) carrying out the majority of the physical activities of caring for their child, baring the responsibility for orchestrating and managing care work, setting standards and ensuring that they are met regardless of whether they were themselves in employment. Fathers may well help as needed but the responsibility remains with the mother (Mederer 1993). In the case of children with disabilities we can see from these stories that this second shift includes the invisible 'articulation work' that occurs in the background such as monitoring and assessing care needs, and the preparation, administering and follow up of medication (Timmermans & Freidin 2007).

8.2 Other families displayed more egalitarian care arrangements in which both mothers and fathers were involved in caring for and caring about their child. Fathers' high level of involvement with their children, identified in other studies of chronically ill children (Chesler & Parry 2001; Clark & Miles 1999; McNeil 2004, Ogg 1997), was also evident here. Crucially this involvement had fundamental implications for the way in which fathers engaged in and experienced employment. Consequently, many of the experiences usually associated with the primary carer were also evident in the stories of others who care.

8.3 Feminist sociological research has made an important case for the notion that 'care' and specifically women's role in care, is an important concept to explore (McLaughlin 2006). In part it is these origins that have generated the focus on women's role in care. This paper illustrates that many fathers also experience some of the same issues that are faced by mothers, when seeking to combine parenting a child with disabilities with employment. These experiences are likely to be shaped by background factors such as class (Armstrong 2006), by the labour market position and by skill and educational levels (Debacker 2008). Although many of these experiences may be faced to some degree by all working parents, it is clear that for the families of disabled children, care needs are significantly intensified and longer lasting and the scope for flexibility is much reduced.

8.4 The research presented here also demonstrates how childcare decisions are contextualised within a web of relationships that can usefully be explored through dyadic and family based research. The concept of 'carer' generally refers to individuals involved in the time consuming 'work' of caring for other individuals. In broadening this conception to explore the relational and emotional experiences of those who care about we can elicit implications that parenting a child with disabilities has for employment for both parents.

8.5 This research makes it clear that the focus on the primary carer overlooks the socially constructed nature of decisions about care and employment. Debacker (2008) suggests that partnered women's organisation of employment and childcare is affected by the attitudes and preferences of her partner. Similarly Ransford et al. (2008) exploring the impact of relationships with managers on work-life balance, found that the impact of work relationships goes beyond the individual to affect their spouse and children, requiring an exploration of dyadic and familial relationships to fully understand. The current research lends further support to these arguments and illustrates that a dyadic approach can provide additional insight when exploring the employment decisions and experiences of parents of children with disabilities. Parenting children with disabilities heightens the need for flexibility in the organisation of family, care, and employment responsibilities (Rosenzweig et al. 2008). Understanding the scope for flexibility and how that is maintained at home and at work through interconnected family roles is critical.

8.6 Finally, this research indicates that patterns of organising care in the home reflect patterns of gender relations within the family. Despite the emergence of more egalitarian patterns of organising care, parents continue to be affected by persisting societal assumptions that responsibility for care of the family resides with women (Armstrong 2006) and that the ideal worker is able to work long hours, be responsive to organisational needs and able to put organisational priorities first, unimpeded by family responsibilities (Lewis et al. 2009). Such an ideal is more easily fulfilled by men than by women and is particularly problematic for mothers of young children (Kelly et al. 2010). These continuing ideological assumptions have enormous implications for parents' experiences of work and care.

8.7 Different gender arrangements within the family may benefit from different social policy approaches. Fraser's (1997) typology of care giving outlines three policy approaches to assisting the successful combination of childcare and employment. The first approach she terms the 'Universal Breadwinner' where women have work equality with men by working in the same fields, for similar hours and compensation. However, Fraser suggests that this approach may lead to inequality in leisure as, rather than reducing time on childcare, women appear to sacrifice their leisure time to make time for care-giving (Bittman 2004). The second approach is to endeavour to generate Caregiver Parity by raising the status and financial reward awarded to caregiving. However, Fraser (1997) suggests that this model could be expected to result in persisting gender inequality in the workplace. Fraser's final policy approach is the Universal Caregiver model, where all jobs would be designed to incorporate time for care-giving, work would be characterised by shorter working weeks for all and supported by 'employment enabling' services. The research on which this paper is based suggests a more complex policy approach may be appropriate as different family arrangements may best 'fit' different policy approaches. The Caregiver Parity model might best support arrangements defined here as 'traditional whilst more 'egalitarian' arrangements might benefit most from policies supporting the Universal Carer model.

8.8 If parents of disabled children are to successfully combine employment and care we need to understand these experiences better. It is evident that to overlook fathers' experiences and, through a focus on primary carers, to see other parents as unaffected is a mistake. For many fathers it is clear that their working lives are fundamentally affected by having a child with disabilities. If we are to understand and support experiences better we need to expand the useful work on primary carers to explore others who 'care'.


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