Introduction

Many Organisation for Economic Co-operation and Development (OECD) countries have increased investment in parenting education (Churchill and Clarke, 2010). Focusing on UK developments, this chapter examines the policy and practice aims of one type of provision: group parenting programmes targeted at families with adolescent children. Drawing on the findings of a local programme evaluation, it contrasts policy, programme and service-user concerns about young people, parenting and families. While the discussion highlights the benefits participants gained from taking part in the parenting programme, it illustrates the limited way the programme engaged with and addressed parental concerns and young people's support needs. These limitations, it is argued, are related to tensions between a policy and programme focus on young people as troublesome to others (a problem to be addressed via parenting interventions), in contrast to the participants’ sense of their own and their children's ‘troubles’. The chapter initially considers the policy context and describes the local programme and evaluation study. It then turns to contrast programme and service-user perspectives, ending with reflections on wider policy and programme implications.

The policy context

The social consequences of ‘poor parenting’ became major policy issues under the former Labour government (1997–2010). Over three terms in office, these concerns led to significant investment in parenting education initiatives. Labour developed a spectrum of provision, with a substantial role for group parenting programmes. Consistent with its emphasis on evidence-based policy, Labour stressed the importance of using parenting programmes that had been subject to rigorous evaluation. Two influential programmes were the Australian Triple P programmes and the Webster Stratton programmes developed in the US – which have proved popular forms of provision (Churchill and Clarke, 2010).

These programmes use social learning theory and behavioural interventions to promote ‘authoritative parenting’, which is seen as the most desirable parenting style (Churchill and Clarke, 2010). In practice, most programmes served parents of pre-school children, but Labour also invested in provision for parents of adolescents, funded as part of policies to address youth anti-social behaviour and offending. Controversially, Labour introduced measures – Parenting Orders (POs) and Parenting Contracts (PCs) – that directed parents to engage with parenting programmes (sometimes in combination with other services) to address concerns about youth offending, anti-social behaviour and school attendance (see Churchill and Clarke, 2010).

Introduction

This chapter examines understandings of family life where a parent has an impairment or experiences chronic health difficulties. Over the past two decades, the experiences of families that include a disabled parent have become increasingly visible through research, wider awareness-raising activity and policy debate and development. The strands of research and conceptual work in this area (including our separate work, on which we draw here) often centre around either young people with caring responsibilities for a family member, or disabled adults with dependent children. This is reflective of divisions in academic enquiry (such as ‘childhood studies’ and ‘disability studies’) and in policy and practice (such as ‘children and families’ and ‘adult social care’).

Prior to the 1990s, work in relation to disabled people as parents was often impairment-specific and concerned with ‘risks’ as regards child development (Olsen and Clarke, 2003). A developing policy focus on carers in the 1980s was built upon in the 1990s to identify experiences of care-giving that had previously been under-recognised. One of the most influential strands of work was that developed by Becker and his colleagues in relation to ‘young carers’ (Aldridge and Becker, 1993a, 1993b). Early work in this field was focused on the experience of young carers, who were considered to have missed out on the choices and opportunities of a ‘normal’ childhood: the policy and practice response was to develop services focused on redressing children's losses. This was critiqued as marginalising and problematising disabled adults and as producing a welfare category that insufficiently examined how young people (carers and non-carers) might experience disadvantage and loss of opportunity resulting from lack of support for their parents (eg Morris, 1997; Olsen and Parker, 1997). Further important contributors to debate and understanding in the 1990s and 2000s include disability and parenting organisations (eg the Disabled Parents Network and the Disability, Pregnancy and Parenting International), young carers organisations (eg Princess Royal Trust for Carers) and practice-focused research and development work (eg Morris and Wates, 2006, 2007; Commission for Social Care Inspection, 2009).

As social researchers, we have worked separately on research focused primarily on the experiences of disabled parents (Clarke) and of young carers (O’Dell), but share an interest in conducting research that engages with people's lived experience and seeks to contribute to service and policy development, but avoids a service-led approach.

Introduction

This chapter examines the importance of change in the experiences of disabled parents and their families. This involves focusing on hopes and experiences of becoming and being parents, within a life-course perspective. By this we mean exploring choices and expectations around parenting, from childhood through adolescence and into adulthood. Parenting is often perceived as a ‘normal’ feature of independent adult life. And yet attitudes towards disabled people do not always reflect this. We argue, therefore, that a life-course perspective is vital to the debate of parenting and disability, and the policy shaped to deal with it.

The relative invisibility of disabled parents, particularly when compared to the exposure of children who have been defined as ‘young carers’, is related to the concentration of social policy on the beginning and the end of the life course. This is also reflected in approaches to the support of family life; that is, research on family transitions is largely concerned with the transition to parenthood (and the early parenting years), and transitions into adulthood. The concept of the life course is more flexible than the previous conception of the lifecycle, which presented a normative description of key stages through which each individual passed. However, the experiences of disabled people can be defined and restricted by a policy framework that continues to individualise the life course.

Our findings are intended to comment on the significance of change, both in terms of the experiences of disabled parents and their families, and in terms of the ability of formal and informal supports to respond. We have been concerned to present our examination of change in the broadest possible terms. Therefore, we have looked not only at the implications for parents of the changing needs of children as they grow up, but also at the changes that take place in family composition, and in the nature of disability impairments. Our analysis, then, highlights the importance of understanding that the experience of disability is closely linked to the changing experience of parenting, and the changing demands of the parenting role.

Introduction

This chapter discusses the findings of our study in relation to the support available to disabled parents. It looks at the way in which both formal and informal sources of support were differentially available to the families in our study, as well as the different ways in which formal and informal sources of support work together to promote or inhibit parenting choices.

It is our argument that the support ‘needs’ of disabled parents – an adequate income, secure and accessible housing, a network of informal support, access to leisure facilities, among other things – are intrinsically no different to those of non-disabled parents. However, disabled parents often find it harder to access these sources of support, for reasons such as inaccessible environments, negative attitudes and structural disadvantage. Such barriers must be removed so that disabled people can parent with greater control and independence.

We also argue, however, that the exclusion and marginalisation that disabled parents often face cannot be understood without an awareness of other broader forms of disadvantage and social exclusion, such as poverty and racism. In particular, the way in which access to parenting roles for disabled people intersects with the way in which parenting is differentially constructed for mothers and fathers, and with other structural inequalities closely associated with gender, is of great importance. The chapter ends by taking a look at the implications of our arguments for the provision of services to disabled parents.

It is quite artificial to distinguish between the support available to disabled people in general, and that available to them specifically as disabled parents.When parents in our study talked about the lack of service coordination and responsiveness, especially in the period immediately following the onset of impairments, they referred to the effects in terms of the impact both on themselves as individuals as well as on the family as a whole. Indeed, while the focus of our interviews was on parenting, respondents very often talked about barriers to support applicable to disabled people more generally – issues around access to services and facilities, difficulties in getting information in accessible formats, financial barriers, and so on. Our approach has been to focus, wherever possible, on access to support with parenting. However, it has not always been possible, or indeed even desirable, to separate this from the broader context of social exclusion that faces disabled people.

Introduction

This chapter provides an overview of the research literature concerning the parenting of disabled people, as well as other issues – or ‘problems’ – that relate more indirectly to the parenting of disabled people. In addition, this chapter places our research within some of the key legislative and policy frameworks that underpin the relationship between the state, disabled parents, and their children.

This highlights three particularly important issues. First, disabled parents are all too often absent from research agendas that emphasise the social and environmental context in which parenting takes place. We look at their exclusion from the growing body of research that has, in recent years, focused on the provision of parenting support and education services. However, this reflects a much broader invisibility: a search of the literature for the terms ‘disabled’ and ‘parents’ yields many studies of childhood disability but fewer about parental disability. Where parental disability is referred to, it is more commonly in the context of elderly, disabled parents, and the role of their adult children in caring for them, reflecting a deeper antipathy to the fact of disabled people having children. This itself reveals the assumption that disabled people are somehow inevitably the recipients of ‘care’, rather than the providers of it.

Second, excluding disabled parents from mainstream parenting agendas means that studies of disability and parenting have generally involved a search for deficits in parents and/or negative outcomes in their children. Furthermore, they underline the idea that parental impairment – rather than social disablement – is the key variable of interest. The result is a literature that is not only often weak in understanding the importance of economic and social structures in facilitating parenting, but also separates and fragments the study of disability and parenting by looking at the issue in impairment-specific chunks (such as parents with multiple sclerosis, depressed parents, visually impaired parents). It is a literature that is dominated both by clinical, or quasi-clinical, research designs, and by studies of particular ‘social problems’, again usually involving the welfare of children, which reflect more indirectly on the (quality of) parenting of disabled people. We review one such example – the construction of some disabled parents’ children as ‘young carers’ – in some detail, given the important role it has played in driving forward policy, practice and research agendas in the past decade.

Social research places particular importance on labels and definitions. This is especially so in the areas of disability and family life, where they reflect the assumptions that researchers make about what it is to experience disability, and what it means to be a parent, mother, father, daughter, son, and so on.

In our research, we have conformed to the terminology and definitions of disability preferred by most organisations of disabled people in the UK. For example, we prefer the terms ‘disabled people’ and ‘disabled parents’ to ‘people with disabilities’ and ‘parents with disabilities’. These latter terms, still popularly used about (and by) disabled people in North America and elsewhere, locate disability within the bodies (and minds) of disabled people themselves. They do not sit easily with our commitment to a social model of disability that sees the fundamental experience of disability as one of social organisation, access and equality of opportunity. In this book, then, the term ‘disabled parent’ is used inclusively, not just for those with physical impairments. When we do want to distinguish between the experience of parents with different impairments, we use the terms ‘physical impairments’, ‘sensory impairments’ and ‘mental health impairments’. The first two terms are commonly accepted ways of describing the impairments of disabled people; however, the latter term is less commonly used, but is chosen to reflect our commitment to include all parents within a social model perspective that differentiates between impairment and disability. In addition, we argue that alternatives serve either to locate the ‘problem’ in impairments themselves (‘mental health problems’, ‘mental health difficulties’) or define people in terms of their service use (‘mental health service user’, ‘mental health system survivor’) in a way which would not only be unacceptable for people with physical and sensory impairments, but which does not reflect the lived reality of the people in our study, many of whom had not accessed the mental health ‘system’ and can hardly therefore be said to be ‘users’ or ‘survivors’ of it. In Chapter Six, however, we use the term ‘mental distress’ in preference to ‘mental health impairments’.

Introduction

The origins of this book lie in a critique that we, and others, had made of the conceptual construction of some disabled parents’ children as ‘young carers’. (The historical background and key arguments of this critique were discussed in Chapter One of this book.) It is natural, then, that we would want to look in detail here at the extent of children's involvement in domestic and ‘caring’ work, as well as the context in which it takes place.

We keenly avoid labelling family members as ‘carers’ or assuming that disabled parents do not themselves occupy ‘carer’ roles within the family. Our aim is to explore the different factors that might influence not only the degree to which children are involved in domestic and caring responsibilities, but also the nature of any involvement. This has necessarily included a concern with the ways in which formal and informal support mechanisms operate to encourage and/or limit the involvement of children in ‘caring’ roles. (This follows directly from the arguments we made in Chapter Three concerning the difficulties disabled parents can face in accessing support.) It has also included a concern with the influence of a broad set of possible factors on children's involvement, including family shape as well as the age and gender of children. In the second half of this chapter qualitative data is used from our Stage One families to discuss the factors influencing children's involvement in caring and other work, within these four closely related theme clusters:

• • parental dilemmas and strategies;

• • formal support and ‘young caring’;

• • informal support and ‘young caring’;

• • children as social actors.

In the first half of the chapter, however, we look at what the quantitative data can tell us about the identification of children as ‘young carers’, their involvement in caring and domestic activities, and their relationship to variables such as gender, age, family shape and impairment group.

Identifying ‘young carers’

Our research sample of parents was opportunistic, and cannot be said to be representative of the general population of disabled parents in the UK. In any case, knowledge of the size and characteristics of this broader group is extremely limited. We do not claim, therefore, that the quantitative data presented here paint a picture that is more widely applicable to disabled parents elsewhere.

This chapter examines the breakdown, by means of a range of basic demographic characteristics, of the families in our study.

Stage One

Stage One fieldwork was conducted between October 1998 and June 2000. Interviews were conducted with a parent from 67 families, a child (or children) in 60 of these families, and with 37 partners. The duration of interviews varied widely, with a mean of 133 minutes for parents, 76 minutes for partners and 27 minutes for children. Some of the longer interviews were carried out over two, and occasionally more, visits. Fifty-seven of the parents were mothers – only 10 disabled fathers took part. Twenty-three families were headed by a single parent – only one was a father. Fifty-eight of the disabled parents described their ethnicity as white and five described their ethnicity as Indian (including African-Asian respondents). Only one father was of Indian origin. Two people described their ethnicity as ‘other’ and there were two refusals to this item. No African or Caribbean respondents were recruited to the study, although different cultural backgrounds were represented in a small number of families where children were born into dual-heritage households.

Where respondents identified more than one set of impairments, they were asked which one, in their opinion, was their ‘primary’ impairment. In 21 families the primary impairments involved mental health. However, 33 of the parents in total spoke of having some form of current mental health impairments (Table 2.2).

When we approached potential respondents to our survey, we made it clear that we were interested in the experiences of disabled parents. Nineteen respondents, however, did not describe themselves as disabled, and a further eight respondents said that they ‘sometimes’ described themselves in this way. Less than 60% of the sample, then, responded outright that they were a disabled person (n=39), and respondents who described primarily mental health impairments were less likely to describe themselves as disabled (Table 2.3).

Respondents were also asked when their impairment or condition first had an impact on their day-to-day lives. For half of the sample, the impact (though not necessarily its initial onset) began having already become a parent. The impact for the other half had taken place at various points in their lives, from birth to adulthood (Table 2.4).

As discussed in Appendix One, we also collected data on children's abilities with regard to a range of self-care tasks and developmental skills. The questions were adapted from the Looking After Children (LAC) schedules, and allowed some degree of comparison between the children in our sample and those in a community sample on which the original LAC materials were tested (Ward, 1995). Table A.1 presents the data for the children in our Parenting and Disability (PANDD) study and compares them with those for the original LAC community sample (three children have been excluded because they were below the age of seven at the time of interview). The table is split into three broad columns representing the three age bands used in the LAC schedules and reproduced in our study (ages 7-9, 10-15 and 16+). Each age group is then subdivided (the data from our study have been left unshaded, and the data from the LAC shaded). The questions for each sample are then listed in italics. This enables the reader to compare the data for children in the same age band across the two studies. For instance, we can see that 76.9% of seven- to nine-year-olds in our study could get a drink or a snack for themselves, compared with a figure of 93.3% for those in the LAC sample. However, it also enables us to compare the children in our study with older children in the LAC sample, reflecting concerns about the ‘false maturity’ experienced by the children of disabled parents. For instance, 31.5% of young people aged 16+ in the LAC sample had filled in a claim form. In our sample, the figure was 44.4% for those of a similar age, but only 11.1% for those aged between 10 and 15.

We must be cautious when interpreting these data. Firstly, the numbers are small and valid percentages are given only as an indication of the breakdown of the sample in response to each question, rather than as an indication of statistical significance. Secondly, while the LAC sample questions for all children (up to and including those aged 15) were asked in the third person – that is, to professionals – all of our questions were directed at children themselves. Thirdly, the two samples are not matched in any respect other than age.

Introduction

This chapter restates our commitment to a social model of disability, enabling us to identify the social and environmental barriers that disable parents. Throughout this book, we have used our data to argue that a commitment to enable, support and underpin family roles and relationships must be central to any appropriate intervention. We further stress here that, for many disabled parents, the extent to which they are able to access roles and relationships both inside and outside of the family can have an impact on how they experience the parenting role.

In reporting individual experiences of parenting we must also explicitly recognise that tensions exist between individual and collective approaches to the experience of impairment and disability. We clearly reject any solely individual approach to disability that locates the experience of disability within individuals rather than within families or wider relationships. The dominant outcome of our research has been that adequate theoretical understanding of disability and parenting is only possible within a framework that encompasses both the social and the personal factors that shape people's experiences of impairment, illness and mental distress.

This chapter is our contribution to a critique that some disabled writers (for instance, French, 1993; Crow, 1996) have made of the capacity of the social model of disability to encapsulate fully their experience of impairment, while recognising that this is not its raison d’être. In doing so, we begin to reconsider how impairment is conceptualised. Within this research we wished to compare the experiences of parents with physical impairments and parents with mental health impairments. While conducting the study, it became clear that while a mental health ‘diagnosis’ (or ‘impairment’) was one way in which distress might be defined, in any final analysis both mental health impairment (usually defined by doctors) and mental distress (that is, a personal experience) ought to be considered. This involves building on the development of social model approaches to mental health and therefore moving away from relying on a concept of ‘mental health impairment’ to a consideration of ‘mental distress’. So, as we highlighted earlier in our discussion of terminology (see page vii) we now refer primarily to mental distress.