Many people who provide care to their loved ones do not see themselves as ‘carers’. This may prevent them from receiving the help and support they may need.
This can also mean that they do not get a say in services and that they are not included in routinely available statistics on caring.
The researchers were able to look at this from a personal point of view also because the lead researcher is also a carer
It is important for health and social care professionals to recognise and understand the carer role and to be able to talk to carers about their own health and wellbeing.
Recent years have seen a significant growth in care needs within our society. For example, the Annual Report of the National Intellectual Disability Database Committee (2015) shows that the proportion of those aged 35 or more who are living with a moderate, severe or profound intellectual disability, increased from 37.9% in 1996 to 48.7% in 2015. While it is good to know that people with intellectual disabilities are living longer, this must also be considered in the context of care needs. While some people with a disability are in a position to live independently with minor supports, there are many who require a significant level of care. This is often provided at home by a parent or other family member. The changing demographic in Ireland means that people with intellectual disabilities are now often being cared for by ageing parents and indeed, given our ageing population, we are also seeing persons with intellectual disabilities themselves becoming carers to ageing parents (Hughes, 2016).
Arguably, supporting those who provide care has never been more crucial in our communities. This article focuses on the early identification of carers and how they are supported (or not) in health and social care services in Ireland. The National Carer Strategy (NCS) developed in 2012, sought to tackle both of these issues within some of its key objectives (National Carer Strategy, p.20). Crucially however, almost 8 years on since the strategy was developed, there has been little or no progress on either of these actions.
Lead author, Mary Cronin, has the unique opportunity to study this important topic from the perspective of both a carer/parent of a young person with an intellectual disability and a researcher on the CHERISH project at the Centre for Mental Health and Community Research in Maynooth University Department of Psychology and Social Sciences Institute.
The CHERISH (Community Health-basEd appRoach to Improving carerS Health and wellbeing) project (supervised by Professor Sinéad McGilloway) aims to help promote a ‘Think Carer’ approach in health and social care settings in Ireland. The project involves a mixed methods sequential design and is being conducted in three stages (Figure 1). Some of the key findings from Stage One of the study – based on a nationwide survey of carers – are outlined here.
A large amount of care in Ireland is provided in the home by people who are often referred to as ‘family carers’ or ‘informal carers’. In recent years, the term ‘carer’ has received some attention in the literature due to the fact that many people who provide care, do not refer to themselves as ‘carers’, but rather identify with the relationship they have with the person for whom they provide care (e.g., mother, father, brother, sister) (Hughes & O’Sullivan, 2017). This has important implications because many of those who provide care, either do not avail of the supports that are available to carers in the community, or do not seek such support; for this reason, they are often absent from carer research and routine statistics.
One of the challenges in developing policy and supports for carers is that there is no generic caring role. Unsurprisingly perhaps, our survey findings showed that care recipients typically have diverse and complex needs with many having more than one reason for needing care. For example, those with autism often also had an intellectual disability. Each caring role may be influenced by cultural and familial experiences (Montgomery, 2103) which, in turn, pose a significant challenge for health care professionals in identifying carers, as well as enabling people to self-identify as carers. In a review of the literature on carer identity, Eifert et. al. (2015) discuss the importance of identity and its influence on behaviour.
The failure to self-identify as a carer is one of the key reasons why carers do not request help or avail of supports. According to a Eurocarers factsheet on the physical and mental health of informal carers, ‘it is crucial that carers are identified in national health and social care systems to enable systematic data collection as well as to target carers and to inform them about the range of support available to them’. (Eurocarers, 2016, P4).
As someone who provides day-to-day care to her daughter, Niamh, who has an intellectual disability, Mary Cronin reflects here on her own experiences of identifying as a carer and how it influenced her when embarking on her PhD ‘journey.’
‘Even before her birth, I was her mother; it’s what we expect when we await the arrival of a newborn. We are not expecting to become a ‘carer’. The events that were to unfold following her birth – the health issues and the subsequent diagnosis of a rare syndrome – further reinforced my maternal instincts. As a mother (or parent), you cater for the needs of all your children and basically just get on with it. Niamh was raised happily in the middle of her two brothers. Her challenges were dealt with as they arose and in many respects, we did not feel differently to any other family. We never thought much about the additional care which Niamh required – it was just part of the routine to us. It was the accumulation of a number of things that caused me to consider my role more closely and acknowledge that, although I was just a mother here, the level of care being provided was far beyond what would be considered in typical parenting.
Prior to Niamh turning 18, in 2017 we had to face the daunting prospect of sourcing adult disability services and during this time, her older brother had just started university while her younger brother had just started secondary school. All of these transitions were emotional in their own way, but it was at this point when I really began to reflect on my role as a parent to Niamh.
As exhaustion set in, and anxiety arose about the future (both mine and hers), I struggled to think about or plan for it all and had no idea who to ask. Through an interest in research, I began to read and came upon the term ‘family carer’ and for the first time acknowledged that it applied to me. I realised that as well as being a mother, I provided additional care and that it goes above and beyond the standard parenting role and will continue to do so. At this point, I realised that I had effectively been adopting the role of ‘carer’ for almost 20 years and had never availed of any information, help or supports for carers other than the supports within the disability sector itself. Also, as a consequence of not identifying as a carer I had no voice in service development and research. This was the impetus for my PhD research and the CHERISH project which I see as an important vehicle to give a voice to other carers. I was expecting to become a mother, I was not expecting to become a carer as well and it took me almost 20 years to acknowledge that it had actually happened’.
Thus, the CHERISH project emerged for both personal and academic reasons. The aims of the (recently completed) national survey which was conducted during Stage One of the project were to: (1) explore carers’ experiences in health and social care services; (2) ascertain the extent to which they identify as a carer; and (3) assess psychological distress, quality of life, stigma and help seeking.
The findings paint a grim picture of how carers feel they are understood in health care settings. For example:
- 61% felt that Health Care Professionals (HCPs) rarely or never understand the challenges faced in caring role.
- 51% felt that HCPs are rarely or never concerned for carers’ health and wellbeing.
- 77% felt that HCPs are rarely or never interested in hearing about their experiences of caring.
In addition, a number of questions were included in the survey to ascertain how those who provide care, respond to the term ‘carer’. For instance, respondents were asked if they refer to, or describe, themselves as ‘carers’ when completing official documents, such as census forms, national health surveys etc. As outlined below, we found that the vast majority of those surveyed, did not informally or formally identify themselves as ‘carers’.
Participants were also asked how they refer to themselves in terms of the person for whom they are providing care Only 27% of those surveyed choose the word ‘carer’ and in all but one case, it was chosen along with another option such as brother, sister, mother, father etc. Furthermore, 53% of respondents indicated that they ‘rarely or never’ refer to themselves as a ‘carer’ when completing official documents (Figure 3).
The survey responses also reflect mixed feelings about the term ‘carer’, with some seeing it as an acknowledgement and others rejecting it outright and finding it offensive. A number of selected illustrative quotations in this respect, are provided below, all of which relate to participants who are providing care to someone with an intellectual disability.
‘…makes me feel like less of a parent’
‘Was weird at first because my son was young and didn’t really feel different, now with the level of extra care he needs I see how I am a carer and a parent’
‘Offended, I am my daughters mother. A carer to me means someone hired to help her’
‘I prefer to be referred to as his mother. If filling forms that request profession I put in carer as I had to give up my profession. I don’t like the term carer it infers we’ve sorted out my sons care but the reality is family members are trying to do a job they’re not trained for’
‘Involuntary! Life failure’
‘Fine – it’s the correct term and at least is an acknowledgement of all you do.’
The above responses illustrate the complexity of feelings regarding the term ‘carer’. Our findings also confirm that many of those who provide care in our communities are hidden or invisible carers and, therefore, that our statistics regarding caring are likely to be highly conservative.
These early findings from the CHERISH project will help to inform Stage Two of the study which will involve in-depth interviews with a range of stakeholders in order to identify how best we might inform and support HCPs to enable them to better identify and help those who provide care in our communities. As part of this work, we will also explore in more detail, the complexities around the use of the term ‘carer’ and how health care professionals might be encouraged and supported to initiate a conversation about caring in a sensitive manner; this, in turn, may enable them to provide appropriate care, whilst also acknowledging the carer role and the importance for the carer of maintaining, at the same time, their own personal identity.
Eifert, E. K., Adams, R., Dudley, W. & Perko, M. (2015) Family Caregiver Identity development: A Literature review. American Journal of Health Education 46(6) 357-367
Eurocarers (2017). The impact of caregiving on informal carers’ mental and physical health. Accessed online 22/01/20, https://eurocarers.org/publications/the-impact-of-caregiving-on-informal-carers-mental-and-physical-health/
Montgomery, R. J. V., & Kosloski, K. D. (2013). Pathways to a caregiver identity and implications for support services. In R. C. Talley & R. J. V. Montgomery (Eds.), Caregiving: Research, practice, policy. Caregiving across the lifespan: Research, practice, policy (pp. 131-156). New York, NY, US: Springer Science + Business Media.
National Carers Strategy (2012), Recognised, Supported, Empowered. Brunswick Press Ltd. Accessed online 22/01/20 https://www.gov.ie/en/publication/a1e44e-national-carers-strategy/
National Intellectual Disability Database Committee , (2015) Annual Report of the National Intellectual Disability Database Committee, Main Findings. HRB Statistics Series 30. Accessed online 22/01/20 https://www.hrb.ie/fileadmin/publications_files/NIDD_2015_Annual_Report_web.pdf
Hughes, Z (2016) “Intellectual disability, caring and role reversal” The Irish Social Worker Spring 2016, (p. 66-70).
Hughes, Z. & O’Sullivan, L. (2017) Defining and Profiling family carers: reflections from Ireland. International Journal of Care and Caring, 1:3, 421-27