The experience of being a father of a son or daughter with an intellectual disability: Older fathers’ perspectives

Background: As life expectancy for people with an intellectual disability increases, there is a growing cohort of older father carers. This study aimed to gain a more in-depth understanding of older father carers’ experiences of parenting. Methods: Semi-structured interviews were conducted with 7 older fathers ( M = 63.9 years) and analysed using constructivist grounded theory. Results: Three conceptual categories were identified. “Wearing different hats: how fathers’ sense of identity had altered over the years. “Family comes first”: importance placed on the family unit. “Getting on in years”: the challenges faced by ageing fathers parenting their son/daughter. Conclusions: Fathers re-evaluated their priorities and found a new identity in their parenting role, although they continued to see themselves as secondary carers. Fathers worried about the future as their health declined but drew strength from the benefits they had derived and the challenges that they had overcome to do their best for their son/daughter and their family.

or have removed fathers from their analysis due to low participant uptake (Thomson, Glasson, Roberts, & Bittles, 2017).
Small numbers of older fathers (age 60 years and over) were included in only two of these studies (Cairns et al., 2013;Rowbotham et al., 2011). A meta-synthesis of studies on the experience of carers of people with an intellectual disability found that the majority of studies did not separately report the experiences of fathers and mothers (Griffith & Hastings, 2014). Yet there is some evidence that mothers and fathers have different experiences of caregiving, in terms of perceived benefits and challenges (Hastings et al., 2005;Olsson & Hwang, 2006;Saloviita, Itälinna, & Leinonen, 2003;Taunt & Hastings, 2002). It is unclear how generalisable these findings are to older fathers as only Saloviita et al. (2003) included this group in their study, with an age range of 23-84 years and a mean age of 45 in the sample. A survey of 609 male carers, which included 119 fathers, was conducted by the Carers Trust and the Men's Health Forum in 2014 (The Carers Trust, 2014). This survey was open to carers of all ages, with just over one-third of participants aged 65 years and over. A number of issues were identified in this survey which participants considered to be unique or different for male carers. These included a lack of recognition of their role by society, professionals and services. The balance between work and care was further identified as a challenge that was different for male carers. These results suggest that the experience and impact of caring are not the same for mothers and fathers. If this is the case, research which does not separately report fathers' experiences of caring provides an incomplete picture.
Where fathers' experiences have been separately considered, there are also significant gaps. A recent review of the literature related to fathers of children with an intellectual disability included only fathers of a son/daughter from birth up to age 22 (Davys, Mitchell, & Martin, 2017). The themes identified in this review included response to diagnosis, varied response to intellectual disability, concern for the future, work, roles and relationships, impact of fathers upon child development, fathers and service providers, and fathers needs and coping strategies. While these studies provide insights into the experiences of fathers of children and young adults, they do not capture all fathers, namely fathers who are ageing and have older children with an intellectual disability.
The current study aims to provide a more in-depth understanding of older fathers' experiences of parenting a son or daughter with an intellectual disability. This type of study may help services to provide more targeted support to older fathers.

| Participants
The inclusion criteria for the study were as follows: having a son/ daughter with an intellectual disability and being at least 60 years of age. Seven Caucasian fathers (father mean age: 63.9 years; son/ daughter with an intellectual disability mean age: 31.0 years) were recruited through charities and organizations providing services or supports to people with an intellectual disability and/or their families in Scotland. Further demographic information is provided in Table 1.
Identifying fathers for this study was challenging as the majority of charities and organizations supporting recruitment were in contact with the person's mother and often did not have details for fathers. When fathers were identified and approached, very few wished to participate in the study. The charities who assisted with recruitment did not disclose how many fathers were approached. Despite being sent detailed information on the purpose of the study, two interested fathers provided contact information for their wives, rather than themselves, as they assumed that the researchers would be most interested in talking to their son/ daughter's mother. Once the researchers confirmed that it was actually the father that was of interest for the study, both fathers were keen to participate.

| Qualitative approach
Data collection and analysis procedures were informed by Charmaz's (2000) account of grounded theory. The aim was to gain a rich and in-depth understanding of the experience of fathers parenting their son or daughter with intellectual disabilities, taking into account the multiple perspectives and circumstances of fathers. As the existence of multiple socially constructed realities is acknowledged in grounded theory, this approach is well suited to the study.

| Data collection and analysis
The first stage of the study involved semi-structured interviews using broad and open-ended questions to allow themes to develop. A historical approach was taken to questions, with the interviewer asking questions about their son or daughter's early years up to the present day. This style of interview was chosen to put participants at ease and allow them to tell the story in their own words. An initial interview guide was developed which included questions such as "Tell me about your son/daughter and your family life", "What was it like when your son/daughter started school?" Rather than following a step by step process, grounded theory involves moving back and forth between various stages of data collection and analysis. Therefore, after each interview, the data were analysed and coded, with subsequent interview schedules being informed by the themes from the analysis of the previous interview(s). One interview was conducted per participant, with interviews lasting between 60 and 112 minutes. Interviews were audio-recorded, with participants' consent, and transcribed verbatim by the researcher. A written summary of each interview was produced and sent to the participant for review. Participants were invited to make any corrections where their meaning had been misinterpreted and to add any further information. All fathers responded and were largely happy with the account of the interview, with only one father asking that a quote from the bible be included to summarize his experiences.
In keeping with grounded theory, an inductive approach to analysis was used to develop categories and themes from the data, rather than trying to fit data into prescribed categories.
Two stages of coding were used in Charmaz's (2000) grounded theory; initial coding which involved analysing the data to search for the participant's meaning; and focussed coding when the most useful or pertinent codes were selected to represent the themes emerging from the data. The researcher moved between stages of coding and between transcripts to compare the codes and themes that had been identified. In keeping with Charmaz's account of grounded theory analysis, a core category was developed to explain the phenomenon under study. NVivo 10 (QSR International, 2012) was used to assist with the organization of codes and themes. Theoretical sampling was used in the current study to inform which themes or ideas would be focussed on in each interview, allowing for incomplete categories to be filled with new data. Data collection and analysis in constructivist grounded theory are usually stopped once saturation is reached. Saturation was not reached in all themes, due to the aforementioned issues with recruitment, but this was achieved for most themes in the theoretical framework.
Ethical approval for this study was obtained from the University of Glasgow's Ethics Committee.

| Life through a different lens
While fathers' experiences were unique, analysis of the data re-

| Wearing different hats
Fathers described many aspects of their identities, which included that of parent, expert in their son/daughter's care, and main breadwinner. Switching between these identities as the situation demanded, or "changing hats" as one father described it, was commonly reported by fathers. Which of these "hats" or identities were most salient to them tended to change over time. Fathers discussed how some "hats" were maintained, gained or lost while parenting their child with an intellectual disability. These different "hats" are discussed in the subthemes below.

| A parent not a carer
Many fathers did not identify with the label of carer and rejected this term when it was used by the interviewer. As is discussed later in this paper, fathers felt that they had a strong bond with their son/ daughter and so the term "carer" may have been seen as underrepresenting the importance of their parental relationship, and implying that they were not close: On the other hand, the role of father was one that was taken very seriously. As far as they were concerned, all caregiving tasks that they completed were due to being a father and not a carer. It was clearly important to these men that they were a good father and they were determined to do all they could for their son or daughter: I mean, one of the things we've always said is 'she's our daughter, same as her elder sister. We do our best for her elder sister and we're doing our best for Jessica'.

| Someone's got to earn the corn
Providing for their family financially was another important part of fathers' identities, particularly when their wife had to stay home to look after their son/daughter full-time. As fathers were usually the main breadwinner within their family, most acknowledged that their wife provided the majority of the care for their son/daughter. Fathers used language such as "filling in" and "allowing her to take a break" to describe their contribution to their offspring's care. This suggests that they did not consider caring to be their main role and that they were caring on a temporary basis to assist their wife. This was even true of fathers who explicitly described themselves as dividing care 50/50 as well as those who had retired and were just as available as their retired wife. The acknowledgment that their wife was most involved was often followed by a justification that this division of tasks was common among families: I'm more of an aide de camp for Amy. I think most husbands are. (Mr McKay) … and whilst I was there as much as I could be for Laura, somebody's got to go out and earn the corn.

(Mr Thomson)
F I G U R E 1 Grounded theory model of "Life through a different lens" One father even admitted that he had had a more traditional view of the division of household tasks in the beginning but that this had changed over time: I think in the early days I was probably, I'll not say chauvinistic but old fashioned in the way that the kids were for Laura, I went out and made the money.
(Mr Thomson) Mr Thomson was the only father to explicitly state this but the idea of traditional gender roles ran throughout the interviews. When asked for specifics about how they cared for their son/daughter and what that involved, most identified certain physical tasks as their domain, while others "belonged" to their wife.
My wife does the primary care and then I do the fetching and so on, and help at the end.

(Mr Lampton)
A different pattern emerged for two fathers who had originally been the main breadwinners in the family but had to give up their jobs in order to help more with their son/daughter's care. These fathers had previously held high-status jobs with large salaries and appeared to struggle with letting go of these identities. One father spoke about feeling like a "second class citizen" now that he was unemployed. They expressed sorrow at leaving these previous lives behind and felt that this change had a negative impact on their sense of self and social sta-

| Family comes first
Family played a key part in the lives of all fathers. The bond that fathers had formed with their son/daughter was discussed at length in the interviews. Fathers spoke enthusiastically about who their son/daughter was and what they meant to them. Fathers acknowledged that there were stresses associated with having a son/daughter with an intellectual disability but also emphasized the positives that their son/daughter had brought into their families' lives. These different aspects of family life with a son/daughter with an intellectual disability are discussed in the subthemes below.

| It opens your eyes
In addition to the unique bond that fathers shared with their son/ daughter, their parenting journey had significantly changed the way that fathers looked at the world and had opened their eyes to the experiences of others. According to these fathers, realizing that their son/daughter had a disability had been something of a reality check and had made them more aware of the difficulties that others faced: In the past, before Jessica, you see people with disabilities and you just (shrug) 'It's just a disability' but now when I see somebody with a disability I wonder how they're getting on.

| It did affect us
While fathers emphasized their personal growth, they also recognized that having a son/daughter with an intellectual disability had impacted the family, both positively and negatively. Some fathers struggled with the idea that by reducing their hours or giving up work entirely to help look after their offspring, they had somehow let their family down by failing to provide for them properly. This was a particular concern among fathers who had been high earners and whose family had a comfortable lifestyle prior to the birth of their son/daughter with an intellectual disability. Given the importance they had placed on their role as the main breadwinner, fathers were upset by the impact that their loss of earnings had on the family:

| Getting on in years
Thinking about how they and their family had been impacted by caring caused fathers to consider how their experiences had or would change as they entered retirement age.
They were now beginning to face what their retirement would have in store for them and to tackle the issue of what would happen to their son/daughter once they were no longer able to continue looking after their son/daughter. The fathers' growing concerns about the future are addressed in the subthemes below. It is just hard work, constant attention.

(Mr Lampton)
Some fathers were initially resistant to admitting that they needed to adjust the tasks they performed for their son/daughter as they aged and were reluctant to ask for help. This appeared particularly difficult for fathers when they struggled to complete physical tasks. Given that fathers often considered physical tasks to be their domain, while their wives were more involved in emotional care, this change in their ability to shoulder such tasks may have left fathers feeling redundant: As she got older I refused to consider myself getting older and it took me a long while to start using the hoist and things that were provided. But I realised, after a few problems with health wise, that meant I better start using the hoist.

(Mr McKay)
While most fathers wanted to continue looking after their son/ daughter, it was unclear how much choice they had in the matter.
Language such as "carrying on" was frequently used, which captured the need to continue and cope as best as possible. After years of experience with the social care system, many fathers felt more able to navigate the system to obtain necessary supports and services. Yet, some fathers did not appear to feel this way and spoke of reaching out to social work for assistance but being told to carry on while they could. Feeling that they were just left to get on with things as best DUNN et al.

| Missing out
Reflecting back on how things had changed during their parenting journey, most fathers began to express that they had often missed out on opportunities due to their caring role. While fathers did not regret caring for their son/daughter, they felt that they had made significant personal sacrifices in order to do so. They appeared to feel torn between these ideas and at times had to battle to focus on the positives: I've had my moments where I've said 'Why me?' When my mates are all off to a golf weekend and I can't go. Or off to a stag weekend and I can't go on a stag weekend.

(Mr Kendall)
Having adjusted to their caring role and developed a good grasp on how to navigate the social care system, fathers were suddenly faced with a new stage in their lives for which they were not prepared. The realization that their retired life would be quite different from their peers had also started to sink in and fathers were grappling with what this would mean going forward: What do most couples do when they retire? They see themselves having the freedom to do the things they would like to do. Now I'm not saying Carolyn and I won't be able to do that, but with certain things we won't be able to do it unless we make provision for Mark.

| What lies ahead?
Fathers were starting to plan for their offspring's future and accept that there would eventually come a time when they could no longer look after their son/daughter. This brought with it a number of concerns, such as anxiety about the quality of care that their offspring would receive. Feeling that they were unable to rely on the system to care properly for their son/daughter appeared the main cause of stress for parents when they tried to envision their offspring's future: We're always scared she'll get her own place and they'll bring people in …. You hear horror stories.

(Mr Lampton)
The concern about what might lie ahead for their son/daughter often motivated fathers to begin the planning process to secure their offspring's future. Most fathers had taken some steps to put a plan in place for their son/daughter, although these ranged in nature, as well as in degree of development. The length of time that it took to put things in place had taken fathers by surprise and most were highly frustrated by the bureaucracy involved: Amy and these other parents have been at this for over 10 years, nearly 12 years since the first started making the first enquiries. Having been let down by the system many times in the past, fathers were reluctant to trust that health or social care services would do the best for their son/daughter when the time came. However, fathers did not appear to be completely panicked by this prospect and seemed to feel that they still had enough time to develop a concrete plan.

| D ISCUSS I ON
The to get their needs met. These were fathers whose offspring had a severe or profound intellectual disability, one of whom also regularly exhibited challenging behaviour. These fathers had experienced particular difficulties in obtaining the supports and services they felt that their son and daughter required. The type of support tasks that they needed to perform were also physically demanding. However, the only other father in the sample whose son/ daughter had more significant support needs maintained a more positive outlook and his account of life with his daughter was full of laughter. An important difference from the other two fathers was that he described receiving a high degree of support from formal and informal sources. While other factors may also be at play, this highlights the importance of everyday support, particularly when someone has significant support needs to be met. "Fighting the system" in order to obtain adequate support and resources was identified as the most stressful aspect of parenting an offspring with an intellectual disability. A general dissatisfaction with statutory support was expressed by all participants. This is consistent with broader surveys of carer satisfaction, which show that only a minority of working carers in the UK report that they receive adequate services to support them in their role (Brimblecombe, Pickard, King, & Knapp, 2016;Milne, Brigden, Palmer, & Konta, 2013).
However, the fathers also found the experience of dealing with services highly stressful and felt that it took a significant toll on their well-being. Social and healthcare workers may genuinely struggle to provide the resources families want, particularly at a time of austerity. However, efforts should be made by statutory agencies to avoid taking an adversarial position and there should be a greater awareness that these "fights" with the system can have a negative impact on parents' well-being.
Fathers' views that it had been a "battle" to obtain services were also consistent with findings from a meta-synthesis on the experience of family caregivers of individuals with an intellectual disability and challenging behaviour (Griffith & Hastings, 2014). Taken together with findings from the current paper, this suggests that difficulties parents experience in obtaining appropriate services is a long-standing issue. It is interesting that some of these older fathers felt that they had now achieved more access to services or had figured out how to work the system. It may be that this perceived change is due to a better understanding of how to obtain services. Alternatively, after so many years caring, fathers may feel more grateful now for any services that they can obtain. Love and concern for their offspring motivated fathers to make plans for the future. However, the degree to which fathers had taken steps to finalize such a plan varied greatly between fathers.
A systematic review which included studies on the views of older carers identified fear of the future as an overarching theme (Innes, McCabe, & Watchman, 2012). While fear of the future did emerge as a theme in this study, it was not a dominant theme. There was a lack of urgency in making future plans for all but one father. This difference may be due to the fact that most previous studies have focussed on mothers' views. Fathers who expressed significant concerns about their offspring's futures were mainly those who had begun to experience health difficulties. They were aware that they would not be able to provide long-term support to their offspring.
Previous research with older parents has also reported that health scares can lead parents to revaluate their ability to continue looking after their son/daughter with an intellectual disability (Pryce, Tweed, Hilton, & Priest, 2017). The fathers in this study argued that there needed to be timely planning with families, to avoid crisis situations arising when parents were no longer able to support their offspring.
Younger parents might also find it helpful to hear the views of these older parents, to help them think about future plans at an earlier stage.
This is the first known study focussing on older fathers' experiences of caring for their son/daughter with an intellectual disability. The results have added to the evidence base by focussing on a population who have been largely excluded from research around the experiences of family carers. All participants were married white Scottish fathers which may reduce the relevance of the emerging themes for other groups of fathers. There was also difficulty in recruiting fathers for the study. This has been noted in previous research and it has been suggested that this is partly due to fathers being unavailable during working hours, a lack of visibility to services, and beliefs that mothers are best able to answer questions about their son/daughter (Carpenter & Towers, 2008). The fact that two fathers tried to steer the researcher towards the mother suggests that mothers, in this older generation, still tend to be seen as responsible for the emotional and physical care of their offspring.
Yet after the interviews had ended, a number of the fathers confided to the researcher that it had been a relief to talk about their experiences as no one had ever asked them about their caring journey. A future challenge for researchers is to determine means of identifying fathers and encouraging them to participate in research, to ensure their views and experiences are heard.

CO N FLI C T O F I NTE R E S T
There are no known conflicts of interest.