Health and Social Care in the Community (2015) 23(1), 88–96
doi: 10.1111/hsc.12149
Special Issue Between worlds: the experiences and needs of former family carers Patricia Cronin MSc PhD BSc (Hons) DipN1, Geralyn Hynes MSc PhD FFNMRCSI Dip1, Marianne Breen Mary McCarron PhD BNS2, Philip McCallion PhD1 and Liam O’Sullivan MA BSS (Hons) PGCESS3
PhD BA (Hons)
1
,
1
School of Nursing and Midwifery, Trinity College Dublin, Dublin 2, Ireland, 2Faculty of Health Sciences, Trinity College Dublin, Dublin 2, Ireland and 3Care Alliance Ireland, Coleraine House, Dublin 7, Ireland
Accepted for publication 25 July 2014
Correspondence Dr Patricia Cronin School of Nursing and Midwifery Trinity College Dublin Dublin 2, Ireland E-mail [email protected]
What is known about this topic
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Caregivers report poor quality of life, experience physical effects, high levels of depression, anxiety, stress, emotional strain and social isolation. Theorists have conceptualised caring as a ‘career’ that is punctuated by key events or transitions, one of which is the movement into the post-caring phase.
What this paper adds
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For former family carers in Ireland, post-caring is a transition that comprises three, interrelated, themes represented as ‘loss of the caring world’, ‘living in loss’ and ‘moving on’ and symbolised as being ‘between worlds’. Post-caring has far-reaching and poorly understood emotional, economic and social consequences for former family carers. Acknowledgement and support for re-connecting with communities is needed.
Abstract While the financial, physical and psycho-social burden for caregivers is recorded, less is known about the post-caring experience. The purpose of this qualitative descriptive study was to explore the experiences and needs of Irish former family carers in the post-caring/care transitions period. Former family carers were defined as family members who provided physical and/or social care to a family member with an illness or disability in the home for at least 6 months prior to nursing home/ hospice placement or death. A total of 40 family carers were recruited from members of or known to voluntary care groups/associations in Ireland. Fourteen participants took part in a focus group discussion and 26 participated in one-to-one, semi-structured interviews, all of which were undertaken in 2010. The focus group discussion focused on gaining a broad understanding of the participants’ post-caring experiences and the emergent themes formed the basis for the development of a semistructured interview guide. Data from the focus group were analysed inductively using Creswell’s qualitative analysis framework, while template analysis was the method of analysis for the 26 individual interviews. For the participants in this study, post-caring was a transition that comprised three, interrelated, non-linear, iterative themes that were represented as ‘loss of the caring world’, ‘living in loss’ and ‘moving on’ and symbolised as being ‘between worlds’. Transition was a complex interplay of emotions overlaid with economic and social concerns that had implications for their sense of health and well-being. This exploratory study begins to address the dearth of data on post-caring/care experiences, but further research is needed to inform support interventions to enable former family carers to ‘move on’. Keywords: care-giving, family carers, informal care, qualitative research
Background to the study Health policies in Organization for Economic Cooperation and Development (OECD) countries place increasing emphasis on home-based care (OECD 2011). In Ireland, family members take on the role of 88
informal care-giving (Equality Authority 2005, The Carers’ Association 2008, Department of Health and Children 2012). Similar to trends internationally, Irish government policy targets home-based rather than institutional care in response to changing demographics (OECD © 2014 John Wiley & Sons Ltd
Experiences and needs of former family carers
2011). Financial incentives include a carer’s allowance and home-based care packages, though the latter have been significantly reduced in recent cuts in healthcare spending. Long-term family carers are likely to give up employment, retire early, reduce working hours or refuse promotion to continue or increase their caring role (Thies & Bleiler 2011). Carers are also likely to experience additional costs related to care-giving such as increased medical expenditures, taxis and other transport, and assistance (Black et al. 2010, Thies & Bleiler 2011). Research points to poor health and well-being among Irish carers, and it has been suggested that the sustainability of informal family care is under severe threat (O’Sullivan 2008, O’Brien 2009). While the financial, physical and psycho-social burden for carers is well recorded internationally (Thies & Bleiler 2011), less is known about the postcaring experience. This study is an exploration of those experiences among a sample of Irish carers whose family member had died or had been admitted to a nursing home/care facility.
Literature review Carers report poor quality of life, and experience physical effects, high levels of depression, anxiety, stress, emotional strain and social isolation (O’Sullivan 2008, O’Brien 2009, DiGiacomo et al. 2013). Failure of healthcare professionals in recognising the ‘substantial difficulties’ experienced by carers of people who are in advanced stages of illness or actively dying has also been highlighted (Keesing et al. 2011, Hynes et al. 2012). Theorists have conceptualised caring as a ‘career’ that is punctuated by key events or transitions (Gaugler 2005) and one of the most significant trends in this career is the movement into the post-caring phase (Davies & Nolan 2004, 2006). Stage models identified from the literature all incorporate a ‘final’ phase in the caring career that comes about when the person receiving care has died or has been placed in a care home or care facility. This implies that the post-caring phase is an integral part of the total caring experience and has been variously labelled as ‘Exit Stage’ (Lindgren 1993); ‘taking the next step’ (Brown & Stetz 1999); and ‘post care-giving transition’ (Ume & Evans 2011). The concept of ‘former carer’ has been recognised since the late 1980s, but there are a limited number of published studies that focus on the topic. Two theoretical frameworks in relation to the post-caring phase have been developed (Davies & Nolan 2006, Larkin 2009). Larkin’s (2009) model focuses © 2014 John Wiley & Sons Ltd
exclusively on post-caring after the care receiver had died, while Davies and Nolan’s (2003, 2004, 2006) centres on the experience of carers after their care receiver has been placed in a care facility. Post-caring following death of care recipient Larkin’s (2009) construction of post-caring emerged from a qualitative study of 37 theoretically sampled former carers in the United Kingdom. She postulates that the cessation of caring involves three iterative stages, namely, ‘the post-caring void’, ‘closing down the caring time’ and ‘constructing life post-caring’. The ‘post-caring void’ is marked by acute loneliness and feelings of loss. Family members can also react with a mixture of relief and grief, where death provides relief from the relentless strain of caring and witnessing the suffering of the care receiver. The equivocal nature of the post-caring void is categorised by Breen (2012) as: 1 Cumulative stress wherein the ‘wear and tear’ of caring precipitates greater distress post-caring. 2 Stress reduction theory wherein family carers experience a reduced stress post-bereavement. 3 Anticipatory grief wherein carers experience much of their grief before bereavement.
These categories point to the multiple losses that a carer confronts over the course of care-giving so that the death is another albeit significant loss in a continuum and potentially results in complicated grief necessitating support intervention (Orzeck & Silverman 2008). The findings of Aneshensel et al.’s (2004) six-wave longitudinal study of carers (N = 291) of those with Alzheimer’s disease support the suggestion that not all carers respond uniformly following the death of the care receiver. Rather, reactions to bereavement are mitigated by a number of contextual factors such as exposure to stressors, prior experiences during the caring career and access to resources. Self-esteem, socio-emotional support as well as higher levels of education and income also play protective roles in mitigation. Similarly, carers with few depressive symptoms before the death of the care receiver tend to maintain these states afterwards. However, carers who were emotionally distressed or who experienced role overload become more distressed after bereavement (Aneshensel et al. 2004). The second phase entitled ‘closing down the caring time’ is typified by changes in routines and closure activities. Similar findings were made by Brown and Stetz (1999). In their study, the beginning of the death transition was characterised by a reduction in contact with formal services, as well as the removal 89
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of specialist equipment from the home and organising financial matters. Thus, loss may permeate the very structure of everyday life, social interaction as well as grief for the passing of a loved one. The final phase of ‘constructing life post-caring’ stage is highly influenced by families, friends, interests, paid employment and further caring activities. This is not a reconstruction of a past life pre-caring, rather it is building a new life. There is evidence suggesting that many former carers find employment in or engage in voluntary activities related to caring (Arksey 2003, Hirst 2005, Larkin 2009).
of former family carers in Ireland and so build on previous work. Operational definition For the purpose of this study, former family carers are family members who provided physical and/or social care to a family member with an illness or disability in the home for at least 6 months prior to nursing home/hospice placement or death.
Methodology Study design
Placement of care recipient in residential care Davies and Nolan (2004, 2006) conducted 37 semistructured interviews involving 48 people who had assisted a close relative to move into a care home. The findings revealed three phases entitled ‘making the best of it’, ‘making the move’ and ‘making it better’. The placement of a relative is often a ‘last resort’. Factors mediating placement include deterioration of health status of either care recipient or carer or both and increased levels of care needs (Buhr et al. 2006). Placement may be accompanied by a sense of failure, anxiety and guilt (Fjelltun et al. 2009). In these phases, carers sought to do their best within the constraints of their situation; adjust to the move with little preparation; and establish a new caring role and a renegotiation rather than a relinquishment of the role of family carer. In this model, the three central aspects to their new role include: (i) maintaining continuity; (ii) keeping an eye; and (iii) contributing to community (Davies & Nolan 2006). Summary In summary, the transition to and experience of postcaring is complex and potentially traumatic. When post-caring follows the death of the care recipient, the carer may experience a change in every facet of his/ her world with loss of structure, routine and purpose, loss of financial support, social interaction and contacts compounding loss of a loved one. Placement of the care recipient in residential care may bring different pressures including loss and grief without scope for the carer to move on (Argyle et al. 2010). Study aim Post-caring is a key event in the caring career that may comprise transitions associated with the process of re-defining or constructing a new life. The aim of this study was to explore the experiences and needs 90
As the focus of the study was on exploring the needs and experiences of former family carers, a qualitative descriptive study design was deemed most appropriate (Newell & Burnard 2011) bringing an emphasis on understanding the social world from the point of view of the participants. The intention was to produce findings that were ‘data near’ in that the themes and categories that emerged remained close to and described the experiences of the participants (Sandelowski 2010). Participants A total of 40 family carers were recruited from members of voluntary care groups/associations in Ireland. Fourteen of the participants took part in a focus group discussion and 26 participated in one-to-one interviews. The National Network of Voluntary Organisations for Family Carers acted as gatekeeper by inviting former carers to take part in a focus group discussion at a national network meeting. Regional representatives from the National Network distributed participant information leaflets to voluntary organisation members who met the inclusion criteria. Potential participants contacted a member of the research team if they were interested in taking part in the study. Ultimately, 14 participants formed the focus group and individual interviews were conducted with 7 men and 19 women from a wide geographical base. Data collection Fourteen former carers took part in the focus group discussion. The discussion was moderated by a trained independent facilitator and a member of the research team co-facilitated, observed and acted as note-taker. The focus group interview lasted 1.5 hours and centred on gaining a broad understanding of the participants’ experiences of post-car© 2014 John Wiley & Sons Ltd
Experiences and needs of former family carers
ing beginning with a broad question ‘Can you tell me what it has been like for you since you have stopped caring for your family member?’ Subsequent discussion was directed by the participants’ responses to the question and each other. The data from the focus group were manually analysed using Creswell’s (2009) Qualitative Analysis Framework. Data were inductively coded by two members of the research team. Emergent themes (see Box 1) formed the topic guide for the individual interviews. Interviews were undertaken by three members of the research team (M.B., P.C., G.H.) between March and July 2010 and took place in a wide variety of urban and rural locations across the country. The majority of participants elected to have the interviews conducted in their own homes. Interviews were digitally recorded and typically lasted between 1.5 and 2 hours.
least two members of the research team. Member checking as a criterion of credibility was not adopted in this study because the final thematic representation was an aggregate of the participants’ perspectives (Morse et al. 2002). As a result, it was felt that the participants may not recognise themselves from the aggregation. Pertinent quotes to illustrate the themes were extracted from the raw data. Ethics Institutional ethical approval was obtained. Written consent was obtained prior to participating in either the focus group and/or individual interviews.
Findings Characteristics of the sample
Box 1 Emergent themes from focus group Experience of caring/transition Needs Factors affecting quality of life Interventions Particular transitions
Data analysis Template analysis (Crabtree & Miller 1999, King 2004), supported with NVivo 8 software, was employed as the method of analysis for the 26 individual interviews. Template analysis is an approach to thematically analyse qualitative data that involves developing a coding template, summarising identified themes and organising them into a useful structure. This structure is reviewed and altered as the analysis proceeds. The initial template was formulated through an extensive consultation process involving members of the research team. Team members listened independently to one of the interview recordings following which they discussed and agreed the key themes that formed the initial template. In keeping with the principles of template analysis, each interview was analysed using the template as a guide. As the analysis progressed, the template was adjusted and all iterations and revisions were carefully reviewed by at
The sample included 14 former carers who took part in a focus group discussion and 7 men and 19 women who participated in individual interviews. Demographic data were not obtained from focus group participants. Participants in the individual interviews ranged in age from 33 to 81 with a mean age of 57. The length of time spent caring ranged from 6 months to 27 years, with a mean of 7 years and 9 months, while the time post-caring extended from 3 months to 6 years with a mean of 2 years (Table 1). Most had cared for a parent or a spouse. Care recipients had a variety of illnesses with cerebrovascular accidents and respiratory/circulatory illnesses being the most common. Twenty-five of the care recipients had died, while one was still alive, but living in a nursing home. Of those who died, six were in nursing homes. Transition to post-caring In this study, post-caring was represented as a transition that comprised three themes: loss of the caring world, living in loss and moving on (Figure 1). There was broad congruence across all participants in respect of these themes, although individual’s experiences of them varied. The findings are presented under each of the themes and illustrated with quotes from the raw data.
Table 1 Individual interview participants Number of participants
Age range
Gender
Duration spent caring
Time post-caring
26 (25: post-caring following death of care recipient) (1: post-caring following nursing home placement)
33–81 Mean = 57 years
Male – 7 Female – 19
6 months–27 years Mean = 7 years, 9 months
3 months–6 years Mean = 2 years
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services including community nursing and pastoral care, all of which formed the structures for social interaction in the world of caring. Where the former carer’s whole sense of self had become enmeshed in the caring role, this was now lost. As one carer outlined: It wasn’t only that I lost my mother, I lost my income, I lost my job, I lost my reason for getting up in the morning, I lost my routine, I lost all these things and I’d nowhere to turn. (Interviewee #6)
Figure 1 Themes.
For all participants, entry into care-giving represented a loss of their pre-caring world with all its social contacts, employment and other opportunities. Post-caring meant loss of this ‘caring world’ resulting in a void. Daily routines, carer role and identity, the close relationship with the care receiver, and the social network arising from medical appointments and services suddenly dissipated. The loss of the precaring world was more distant and the transition was now between the just-ended caring world and a newly reconstructed world after caring. In this transitional state, carers felt ‘worldless’. They felt they did not belong and did not have any particular label or identity. As one participant stated: I was still in a kind of ‘between worlds’ type thing. I didn’t know if I was coming or going or whatever. (Interviewee #6) You’re in no world, your life before caring is gone, your caring world is gone, you’re left with no world. (Focus group)
Loss of the caring world In this study, early experiences of loss of the caring world occur at the beginning of the post-caring/care transitions phase. They are multidimensional and include loss of identity as carer, loss of role as carer, loss of the close bond with the care receiver and loss of the social relationship with the network of healthcare professionals. Participants referred to the isolation that arose from loss of contact with support
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Evidence of the exclusive relationship between carer and care receiver also emerged, underscoring the losses of post-caring/care transitions. An emotional inter-dependency existed between the carer and the care receiver who did not want anybody else to care for him/her. The strength of the bond was also apparent in the fact that the carer was the only person to engage in certain activities for the care receiver. This closeness included practical, emotional and legal aspects. One interviewee exemplified this: So I used to do everything for her, shower her, clean her, dress her, feed her, which wasn’t the easiest thing to do because she was a very private person. It was so hard. (Interviewee #17)
Living in loss Living in loss was the second theme and refers to the process of being situated within a life of loss or continually experiencing the losses of post-caring/care transitions. A key feature of this was emotional reactions such as guilt, relief and a sense of urgency associated with feeling that they are still ‘on duty’. Loss of the carer allowance even before funeral expenses were addressed, absence of employment opportunities or acknowledgement of the value of the caring skills developed, all contributed to the sense of dismissal by the State and having no value. The combination of loss of income and sense of dismissal was perceived as a barrier to ‘moving on’ to a new world after the cessation of caring. Another barrier was the financial difficulties that accompany post-caring/care transitions in certain circumstances. In describing the experience of ‘living in loss’, complex emotional reactions were described. Various dimensions of guilt were experienced that largely centred on questioning the care they gave and whether they could have done anymore, such as fighting harder for services. One person stated: My GP is always saying to me ‘how often do I have to say to you that it wasn’t your fault he died – it was his time’. (Interviewee #1)
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While another recounted how: The thrush was that bad it was coming out his lip . . . I felt very guilty about that . . . should I have been more on top of them in the nursing home? (Interviewee #24)
Participants also outlined how they felt guilty because they had been thinking about their own situation as their loved one was dying: She’s dying there in front of you and you feel so guilty because what you’re thinking of is how are we going to make ends meet when my Carer’s Allowance stops. (Interviewee #10)
Nonetheless, guilt was also tempered with a measure of relief that the person was no longer suffering. As one person explained: I was happy for her because she was over all her misery; you know Alzheimer’s is such a sad disease. (Interviewee #11)
Several participants described how they felt that they were still on duty, which resulted in clock-watching or poor sleep patterns. A carer identified how: For a long time after he died, I never really slept . . . you’re not really asleep, you’re listening. . .. (Interviewee #25)
Some of the participants appeared to become ‘stuck’ in the losses of the post-caring/care transitions. You’re asking me how life has been. Totally hard and harsh because you have to pay the bills immediately . . . even though your heart is elsewhere. (Interviewee #26) Nobody gives you a bit of credit for what you’ve done. Even if I was to go for a job, I’ve got a gap of 4½ years on a CV. (Interviewee #6)
Moving on The final emergent theme was that of ‘moving on’ and participants in the study indicated that they had ‘moved on’ and out of the ‘trapped’ space between worlds. Thus, some participants no longer viewed themselves as being ‘worldless’ because they had begun to construct a new world. Facilitators for ‘moving on’ included family support and support from carers’ organisations. This was described by one participant: When there was no one else there for me, in some cases even family, the Carers Association were there. All I had to do if I felt particularly down was pick up the phone and there was someone at the other end. (Interviewee #3)
Means of caring for the self in post-caring/care transitions were described. These included keeping active and ‘getting out of the house’, for example by © 2014 John Wiley & Sons Ltd
enrolling on courses in the community. This is illustrated in the following comment: You have to start thinking positively . . . you can either sit there or go down or you can get out of the house and do something . . . You get involved in all these clubs and things but you have to, otherwise you’d crack up. (Interviewee #21)
A tendency for former carers to engage in other caring roles was also reported. Those who engaged in formal caring were split into two cohorts: (i) those who took up the role voluntarily because they found the caring experience very rewarding and made a change in their career and (ii) those who undertook formal caring out of financial necessity and this was the only job for which they had experience. One person stated that: It was such a wonderful, wonderful experience. It made me realise how unhappy I was in my previous job. This has put me on a new road and I have Mom to thank for it. It was such a wonderful feeling caring for her. (Interviewee #16)
Another participant recounted a more practical reason for entering caring: I went straight into the caring role again because I had to. I had to go out and start earning. It was the only place I could get some money. But caring for strangers is a very different thing altogether . . . it’s not the same, they’re not your own. (Interviewee #10)
Discussion In this study, the participants‘ description of themselves as being ‘worldless’ or ‘caught between worlds’ is a new conceptualisation of post-caring/caring transitions. Nonetheless, there are parallels with previous research. Primarily, the three processes of ‘loss of the caring world’, ‘living in loss’ and ‘moving on’ that symbolise being ‘between worlds’ represent an iterative transition that is in keeping with the literature explored earlier (Davies & Nolan 2006, Larkin 2009). The loss of the caring world that occurs at the beginning of the post-caring/care transitions phase mirrors Larkin’s (2009) notion of a ‘post-caring void’ as being the first stage of post-caring and encompasses acute loneliness, loss of purpose and lack of social network of healthcare professionals. However, the participants in this study reported that these profound feelings are not limited to the initial aftermath and can continue into the second or third year of post-caring. Much of the published research on the experiences of carers refers to the ‘burden’ of caring. 93
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With such a conceptualisation, it is easy to overlook how the loss of the uniquely close relationship with their family member contributes to the feelings of emptiness, loneliness and loss. The complex interplay of loss of burden and loss of loved one needs to be more fully understood. This may be a particularly important research focus for the future given that it may be a barrier for former carers in moving on to their new world post-caring. Loss was rendered complex by loss of a way of life and its attendant structures which included links with community nursing, general practitioners, hospital visits and social supports, all of which framed what was often an otherwise isolated world of caring. At a time when these carers were grieving for a loved one, they were also facing the unknown wherein their pre-caring lives could not return and all structures relating to their caring worlds were effectively withdrawn without delay. In this study, the second process of ‘living in loss’ was focused largely on the complex emotional reactions experienced following the death or nursing home placement of the care receiver. Although participants engaged in closure activities similar to those in Larkin’s (2009) second phase of ‘closing down the caring time’, there was little correspondence between them. In this study, closure activities could not be said to be a definitive phase, but rather spanned ‘loss of the caring world’ and ‘living in loss’. Nonetheless, engaging in closure activities was important in that they generated a range of emotional responses. Guilt as an emotional response following the death of a loved one was not a prevalent theme in the literature reviewed earlier. Although speculative, it is possible that guilt is contextual and related to the limited health and social care service supports for family carers in Ireland. Guilt feelings were often spoken of in the context of sourcing, securing and maintaining services for the care receiver amid a sense that he/she may not have received the best care possible. Argyle et al. (2010) refer to a culture of caring in Ireland. In this, there is an implicit expectation that family members have a responsibility for the quality of care provided. When the carer felt that he/she had not provided the best possible care, there was a sense of failure and guilt. Here, there are some parallels with the literature related to nursing home placement, where guilt is associated with and tempered by the quality of care in and attitudes towards the nursing home (Argyle et al. 2010, Gaugler et al. 2011). Although guilt co-existed with a sense of relief for many of the participants, there was also an apparent anger in many of the interactions. This 94
anger was directed largely at health and social care services that were seen to have failed the care giver and care receiver. Thus, carers were left with an emotional legacy that in some instances was a factor in becoming ‘stuck’ in the ‘living in loss’ phase of post-caring/care transitions. This was further exacerbated by the perceived dismissal of their expertise and the contribution they had made to the health system and the negative financial consequences of caring. As Irish and government policies across different health systems seek to reduce dependency on institutional care through various incentives to promote home-based care (OECD 2005, 2011, National Economic and Social Forum 2009), there is increasing risk to carers facing uncertainty and poverty post-caring. In an economic climate of high unemployment, there is little prospect of returning to pre-caring jobs or making new careers. Nonetheless, some of the participants in the current study had begun to ‘move on’, re-formulating their interests, daily activities and their life roles. This process reflects Larkin’s (2009) phase of ‘constructing life post-caring’. Families, interests, friends, paid employment and further caring activities were important in constructing a life post-caring. Keeping active, staying connected and engaging in community had a mutually beneficial effect by making participants feel valued, which in turn had a positive impact on their sense of health and well-being. Further caring activities were a notable feature of the participants in this study. While some could be described as ‘serial carers’ in that they engaged in cyclical caring and post-caring primarily due to a sense of family obligation (Larkin 2009), many actively sought further caring roles. These included both voluntary and paid roles, such as caring for grandchildren, mentoring other carers, engaging with carer and voluntary organisations or formally seeking employment within the care sector. Some of this can be attributed to a sense of worth generated by the notion of making a valuable and valued contribution (Hirst 2005, Larkin 2009). The relationship between serial caring and ‘moving on’ needs to be explored further and debated. Factors contributing to serial caring may be a complex and contradictory mix of discovering skills, having sense of purpose, no longer possessing skills for other kinds of work and needing to have an income. Maintaining social activity while still caring may be a factor in the ability to move on that may in turn influence how the ‘moving on’ process unfolds (Hyde & Janovic 2003). © 2014 John Wiley & Sons Ltd
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Conclusions and recommendations This study, the first of its kind in Ireland to focus on the experiences and needs of former family carers, supports an earlier conceptualisation of a post-caring trajectory (Larkin 2009). There was congruence between ‘post-caring void’ and the ‘loss of the caring world’ and ‘constructing life post-caring’ and ‘moving on’. What is of particular value is that to date, Larkin’s (2009) work was the only one that focused on post-caring following the death of the care receiver. This study begins to address the dearth of data on post-caring/care transition experiences due to death. The findings point to possible increased isolation and an extension of the social, emotional and financial burden experienced by carers in their post-caring worlds. From the findings, continuing support through extending allowances for a set period postcaring and developing support programmes through carers associations would seem to be important facilitators in supporting the ‘moving on’ phase. However, a greater understanding of post-caring support needs and interventions to address them is warranted. There were limitations in respect of the sampling approach taken in this study. Recruitment to the study was primarily undertaken through carers’ organisations, which meant that former carers who are not known to these organisations were not included. The diversity of ethnic groups living in Ireland was not represented in the study sample and although men constitute 40% of carers in Ireland (Central Statistics Office 2007), they are under-represented in carer groups and in this study, where there were only seven. People who had experienced loss due solely to nursing home placement were under-represented and this may reflect the strategy for recruitment and the membership profile of carers’ organisations. A possible limitation may also be that conflicted relationships did not feature in the findings as one might expect. This may be due to the nature of the recruitment process. Nonetheless, the findings depict the lives of former carers as challenging, where some find themselves stuck between worlds. Support for re-connecting with communities is an important enabler for moving on.
Acknowledgements This work was funded by the Irish Research Council for the Humanities and Social Sciences (IRCHSS) and Care Alliance Ireland. The research team wish to acknowledge and thank the family carers who partici© 2014 John Wiley & Sons Ltd
pated in this research and Clare Duffy, Social Policy Officer of the Carers Association for her assistance.
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Gaugler J.E. (2005) Family involvement in residential longterm care: a synthesis and critical review. Aging and Mental Health 9, 105–118. Gaugler J.E., Roth D.L., Haley W.E. & Mittelman M.S. (2011) Modeling trajectories and transitions: results from the New York University caregiver intervention. Nursing Research 60, S28–S37. Hirst M. (2005) Carer distress: a prospective, populationbased study. Social Science and Medicine 61, 697–708. Hyde M. & Janovic M. (2003) Social activity. In: M. Marmot, J. Banks, R. Blundell, C. Lessof & J. Nazroo (Eds) Health, Wealth and Lifestyles of the Older Population in England: The 2002 English Longitudinal Study of Ageing, pp. 167–179. The Institute for Fiscal Studies, London. Hynes G., Stokes A. & McCarron M. (2012) Informal caregiving in advanced chronic obstructive pulmonary disease: lay knowledge and experience. Journal of Clinical Nursing 21, 1068–1077. Keesing S., Rosenwax L. & McNamara B. (2011) ‘Doubly deprived’: a post-death qualitative study of primary carers of people who died in Western Australia. Health and Social Care in the Community 19, 636–644. King N. (2004) Using templates in the thematic analysis of text. In: C. Cassell & G. Symon (Eds) Essential Guide to Qualitative Methods in Organizational Research, pp. 426–450. Sage, London. Larkin M. (2009) Life after caring: the post-caring experiences of former carers. British Journal of Social Work 39, 1026–1042. Lindgren C.L. (1993) The caregiver career. Journal of Nursing Scholarship 25, 214–219. Morse J.M., Hupcey J.E., Penrod J., Spiers J.A., Pooler C. & Mitcham C. (2002) Issues of validity: behavioral concepts,
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their derivation and interpretation. International Journal of Qualitative Methods 1, 1–19. National Economic and Social Forum (2009) Implementation of the Home Care Package Scheme: Forum Report No. 38. National Economic and Social Forum, Dublin. Newell R. & Burnard P. (2011) Research for Evidence-Based Practice in Healthcare. Wiley-Blackwell, London. O’Brien F. (2009) Family Carers Health Survey. Carers’ Association, Tullamore. OECD (2005) The OECD Health Project Long-Term Care for Older People. Organization for Economic Cooperation and Development, Paris. OECD (2011) Help Wanted? Providing and Paying for LongTerm Care. Organization for Economic Cooperation and Development, Paris. Orzeck P. & Silverman M. (2008) Recognizing post-caregiving as part of the caregiving career: implications for practice. Journal of Social Work Practice 22, 211–220. O’Sullivan L. (2008) Health and Wellbeing of Family Carers in Ireland: Results of a Survey of the Recipients of the Carers’ Allowance. Combat Poverty Agency, Dublin. Sandelowski M. (2010) What’s in a name? Qualitative description revisited. Research in Nursing and Health 33, 77–84. The Carers’ Association (2008) Listen to Carers: Report on a Nation-Wide Carer Consultation. The Carers’ Association, Dublin. Thies W. & Bleiler L. (2011) 2011 Alzheimer’s disease facts and figures. Alzheimer’s and Dementia: The Journal of the Alzheimer’s Association 7, 208. Ume E.P. & Evans B.C. (2011) Chaos and uncertainty: the postcaregiving transition. Geriatric Nursing 32, 288–293.
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doi: 10.1111/hsc.12149
Special Issue Between worlds: the experiences and needs of former family carers Patricia Cronin MSc PhD BSc (Hons) DipN1, Geralyn Hynes MSc PhD FFNMRCSI Dip1, Marianne Breen Mary McCarron PhD BNS2, Philip McCallion PhD1 and Liam O’Sullivan MA BSS (Hons) PGCESS3
PhD BA (Hons)
1
,
1
School of Nursing and Midwifery, Trinity College Dublin, Dublin 2, Ireland, 2Faculty of Health Sciences, Trinity College Dublin, Dublin 2, Ireland and 3Care Alliance Ireland, Coleraine House, Dublin 7, Ireland
Accepted for publication 25 July 2014
Correspondence Dr Patricia Cronin School of Nursing and Midwifery Trinity College Dublin Dublin 2, Ireland E-mail [email protected]
What is known about this topic
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Caregivers report poor quality of life, experience physical effects, high levels of depression, anxiety, stress, emotional strain and social isolation. Theorists have conceptualised caring as a ‘career’ that is punctuated by key events or transitions, one of which is the movement into the post-caring phase.
What this paper adds
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For former family carers in Ireland, post-caring is a transition that comprises three, interrelated, themes represented as ‘loss of the caring world’, ‘living in loss’ and ‘moving on’ and symbolised as being ‘between worlds’. Post-caring has far-reaching and poorly understood emotional, economic and social consequences for former family carers. Acknowledgement and support for re-connecting with communities is needed.
Abstract While the financial, physical and psycho-social burden for caregivers is recorded, less is known about the post-caring experience. The purpose of this qualitative descriptive study was to explore the experiences and needs of Irish former family carers in the post-caring/care transitions period. Former family carers were defined as family members who provided physical and/or social care to a family member with an illness or disability in the home for at least 6 months prior to nursing home/ hospice placement or death. A total of 40 family carers were recruited from members of or known to voluntary care groups/associations in Ireland. Fourteen participants took part in a focus group discussion and 26 participated in one-to-one, semi-structured interviews, all of which were undertaken in 2010. The focus group discussion focused on gaining a broad understanding of the participants’ post-caring experiences and the emergent themes formed the basis for the development of a semistructured interview guide. Data from the focus group were analysed inductively using Creswell’s qualitative analysis framework, while template analysis was the method of analysis for the 26 individual interviews. For the participants in this study, post-caring was a transition that comprised three, interrelated, non-linear, iterative themes that were represented as ‘loss of the caring world’, ‘living in loss’ and ‘moving on’ and symbolised as being ‘between worlds’. Transition was a complex interplay of emotions overlaid with economic and social concerns that had implications for their sense of health and well-being. This exploratory study begins to address the dearth of data on post-caring/care experiences, but further research is needed to inform support interventions to enable former family carers to ‘move on’. Keywords: care-giving, family carers, informal care, qualitative research
Background to the study Health policies in Organization for Economic Cooperation and Development (OECD) countries place increasing emphasis on home-based care (OECD 2011). In Ireland, family members take on the role of 88
informal care-giving (Equality Authority 2005, The Carers’ Association 2008, Department of Health and Children 2012). Similar to trends internationally, Irish government policy targets home-based rather than institutional care in response to changing demographics (OECD © 2014 John Wiley & Sons Ltd
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2011). Financial incentives include a carer’s allowance and home-based care packages, though the latter have been significantly reduced in recent cuts in healthcare spending. Long-term family carers are likely to give up employment, retire early, reduce working hours or refuse promotion to continue or increase their caring role (Thies & Bleiler 2011). Carers are also likely to experience additional costs related to care-giving such as increased medical expenditures, taxis and other transport, and assistance (Black et al. 2010, Thies & Bleiler 2011). Research points to poor health and well-being among Irish carers, and it has been suggested that the sustainability of informal family care is under severe threat (O’Sullivan 2008, O’Brien 2009). While the financial, physical and psycho-social burden for carers is well recorded internationally (Thies & Bleiler 2011), less is known about the postcaring experience. This study is an exploration of those experiences among a sample of Irish carers whose family member had died or had been admitted to a nursing home/care facility.
Literature review Carers report poor quality of life, and experience physical effects, high levels of depression, anxiety, stress, emotional strain and social isolation (O’Sullivan 2008, O’Brien 2009, DiGiacomo et al. 2013). Failure of healthcare professionals in recognising the ‘substantial difficulties’ experienced by carers of people who are in advanced stages of illness or actively dying has also been highlighted (Keesing et al. 2011, Hynes et al. 2012). Theorists have conceptualised caring as a ‘career’ that is punctuated by key events or transitions (Gaugler 2005) and one of the most significant trends in this career is the movement into the post-caring phase (Davies & Nolan 2004, 2006). Stage models identified from the literature all incorporate a ‘final’ phase in the caring career that comes about when the person receiving care has died or has been placed in a care home or care facility. This implies that the post-caring phase is an integral part of the total caring experience and has been variously labelled as ‘Exit Stage’ (Lindgren 1993); ‘taking the next step’ (Brown & Stetz 1999); and ‘post care-giving transition’ (Ume & Evans 2011). The concept of ‘former carer’ has been recognised since the late 1980s, but there are a limited number of published studies that focus on the topic. Two theoretical frameworks in relation to the post-caring phase have been developed (Davies & Nolan 2006, Larkin 2009). Larkin’s (2009) model focuses © 2014 John Wiley & Sons Ltd
exclusively on post-caring after the care receiver had died, while Davies and Nolan’s (2003, 2004, 2006) centres on the experience of carers after their care receiver has been placed in a care facility. Post-caring following death of care recipient Larkin’s (2009) construction of post-caring emerged from a qualitative study of 37 theoretically sampled former carers in the United Kingdom. She postulates that the cessation of caring involves three iterative stages, namely, ‘the post-caring void’, ‘closing down the caring time’ and ‘constructing life post-caring’. The ‘post-caring void’ is marked by acute loneliness and feelings of loss. Family members can also react with a mixture of relief and grief, where death provides relief from the relentless strain of caring and witnessing the suffering of the care receiver. The equivocal nature of the post-caring void is categorised by Breen (2012) as: 1 Cumulative stress wherein the ‘wear and tear’ of caring precipitates greater distress post-caring. 2 Stress reduction theory wherein family carers experience a reduced stress post-bereavement. 3 Anticipatory grief wherein carers experience much of their grief before bereavement.
These categories point to the multiple losses that a carer confronts over the course of care-giving so that the death is another albeit significant loss in a continuum and potentially results in complicated grief necessitating support intervention (Orzeck & Silverman 2008). The findings of Aneshensel et al.’s (2004) six-wave longitudinal study of carers (N = 291) of those with Alzheimer’s disease support the suggestion that not all carers respond uniformly following the death of the care receiver. Rather, reactions to bereavement are mitigated by a number of contextual factors such as exposure to stressors, prior experiences during the caring career and access to resources. Self-esteem, socio-emotional support as well as higher levels of education and income also play protective roles in mitigation. Similarly, carers with few depressive symptoms before the death of the care receiver tend to maintain these states afterwards. However, carers who were emotionally distressed or who experienced role overload become more distressed after bereavement (Aneshensel et al. 2004). The second phase entitled ‘closing down the caring time’ is typified by changes in routines and closure activities. Similar findings were made by Brown and Stetz (1999). In their study, the beginning of the death transition was characterised by a reduction in contact with formal services, as well as the removal 89
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of specialist equipment from the home and organising financial matters. Thus, loss may permeate the very structure of everyday life, social interaction as well as grief for the passing of a loved one. The final phase of ‘constructing life post-caring’ stage is highly influenced by families, friends, interests, paid employment and further caring activities. This is not a reconstruction of a past life pre-caring, rather it is building a new life. There is evidence suggesting that many former carers find employment in or engage in voluntary activities related to caring (Arksey 2003, Hirst 2005, Larkin 2009).
of former family carers in Ireland and so build on previous work. Operational definition For the purpose of this study, former family carers are family members who provided physical and/or social care to a family member with an illness or disability in the home for at least 6 months prior to nursing home/hospice placement or death.
Methodology Study design
Placement of care recipient in residential care Davies and Nolan (2004, 2006) conducted 37 semistructured interviews involving 48 people who had assisted a close relative to move into a care home. The findings revealed three phases entitled ‘making the best of it’, ‘making the move’ and ‘making it better’. The placement of a relative is often a ‘last resort’. Factors mediating placement include deterioration of health status of either care recipient or carer or both and increased levels of care needs (Buhr et al. 2006). Placement may be accompanied by a sense of failure, anxiety and guilt (Fjelltun et al. 2009). In these phases, carers sought to do their best within the constraints of their situation; adjust to the move with little preparation; and establish a new caring role and a renegotiation rather than a relinquishment of the role of family carer. In this model, the three central aspects to their new role include: (i) maintaining continuity; (ii) keeping an eye; and (iii) contributing to community (Davies & Nolan 2006). Summary In summary, the transition to and experience of postcaring is complex and potentially traumatic. When post-caring follows the death of the care recipient, the carer may experience a change in every facet of his/ her world with loss of structure, routine and purpose, loss of financial support, social interaction and contacts compounding loss of a loved one. Placement of the care recipient in residential care may bring different pressures including loss and grief without scope for the carer to move on (Argyle et al. 2010). Study aim Post-caring is a key event in the caring career that may comprise transitions associated with the process of re-defining or constructing a new life. The aim of this study was to explore the experiences and needs 90
As the focus of the study was on exploring the needs and experiences of former family carers, a qualitative descriptive study design was deemed most appropriate (Newell & Burnard 2011) bringing an emphasis on understanding the social world from the point of view of the participants. The intention was to produce findings that were ‘data near’ in that the themes and categories that emerged remained close to and described the experiences of the participants (Sandelowski 2010). Participants A total of 40 family carers were recruited from members of voluntary care groups/associations in Ireland. Fourteen of the participants took part in a focus group discussion and 26 participated in one-to-one interviews. The National Network of Voluntary Organisations for Family Carers acted as gatekeeper by inviting former carers to take part in a focus group discussion at a national network meeting. Regional representatives from the National Network distributed participant information leaflets to voluntary organisation members who met the inclusion criteria. Potential participants contacted a member of the research team if they were interested in taking part in the study. Ultimately, 14 participants formed the focus group and individual interviews were conducted with 7 men and 19 women from a wide geographical base. Data collection Fourteen former carers took part in the focus group discussion. The discussion was moderated by a trained independent facilitator and a member of the research team co-facilitated, observed and acted as note-taker. The focus group interview lasted 1.5 hours and centred on gaining a broad understanding of the participants’ experiences of post-car© 2014 John Wiley & Sons Ltd
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ing beginning with a broad question ‘Can you tell me what it has been like for you since you have stopped caring for your family member?’ Subsequent discussion was directed by the participants’ responses to the question and each other. The data from the focus group were manually analysed using Creswell’s (2009) Qualitative Analysis Framework. Data were inductively coded by two members of the research team. Emergent themes (see Box 1) formed the topic guide for the individual interviews. Interviews were undertaken by three members of the research team (M.B., P.C., G.H.) between March and July 2010 and took place in a wide variety of urban and rural locations across the country. The majority of participants elected to have the interviews conducted in their own homes. Interviews were digitally recorded and typically lasted between 1.5 and 2 hours.
least two members of the research team. Member checking as a criterion of credibility was not adopted in this study because the final thematic representation was an aggregate of the participants’ perspectives (Morse et al. 2002). As a result, it was felt that the participants may not recognise themselves from the aggregation. Pertinent quotes to illustrate the themes were extracted from the raw data. Ethics Institutional ethical approval was obtained. Written consent was obtained prior to participating in either the focus group and/or individual interviews.
Findings Characteristics of the sample
Box 1 Emergent themes from focus group Experience of caring/transition Needs Factors affecting quality of life Interventions Particular transitions
Data analysis Template analysis (Crabtree & Miller 1999, King 2004), supported with NVivo 8 software, was employed as the method of analysis for the 26 individual interviews. Template analysis is an approach to thematically analyse qualitative data that involves developing a coding template, summarising identified themes and organising them into a useful structure. This structure is reviewed and altered as the analysis proceeds. The initial template was formulated through an extensive consultation process involving members of the research team. Team members listened independently to one of the interview recordings following which they discussed and agreed the key themes that formed the initial template. In keeping with the principles of template analysis, each interview was analysed using the template as a guide. As the analysis progressed, the template was adjusted and all iterations and revisions were carefully reviewed by at
The sample included 14 former carers who took part in a focus group discussion and 7 men and 19 women who participated in individual interviews. Demographic data were not obtained from focus group participants. Participants in the individual interviews ranged in age from 33 to 81 with a mean age of 57. The length of time spent caring ranged from 6 months to 27 years, with a mean of 7 years and 9 months, while the time post-caring extended from 3 months to 6 years with a mean of 2 years (Table 1). Most had cared for a parent or a spouse. Care recipients had a variety of illnesses with cerebrovascular accidents and respiratory/circulatory illnesses being the most common. Twenty-five of the care recipients had died, while one was still alive, but living in a nursing home. Of those who died, six were in nursing homes. Transition to post-caring In this study, post-caring was represented as a transition that comprised three themes: loss of the caring world, living in loss and moving on (Figure 1). There was broad congruence across all participants in respect of these themes, although individual’s experiences of them varied. The findings are presented under each of the themes and illustrated with quotes from the raw data.
Table 1 Individual interview participants Number of participants
Age range
Gender
Duration spent caring
Time post-caring
26 (25: post-caring following death of care recipient) (1: post-caring following nursing home placement)
33–81 Mean = 57 years
Male – 7 Female – 19
6 months–27 years Mean = 7 years, 9 months
3 months–6 years Mean = 2 years
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services including community nursing and pastoral care, all of which formed the structures for social interaction in the world of caring. Where the former carer’s whole sense of self had become enmeshed in the caring role, this was now lost. As one carer outlined: It wasn’t only that I lost my mother, I lost my income, I lost my job, I lost my reason for getting up in the morning, I lost my routine, I lost all these things and I’d nowhere to turn. (Interviewee #6)
Figure 1 Themes.
For all participants, entry into care-giving represented a loss of their pre-caring world with all its social contacts, employment and other opportunities. Post-caring meant loss of this ‘caring world’ resulting in a void. Daily routines, carer role and identity, the close relationship with the care receiver, and the social network arising from medical appointments and services suddenly dissipated. The loss of the precaring world was more distant and the transition was now between the just-ended caring world and a newly reconstructed world after caring. In this transitional state, carers felt ‘worldless’. They felt they did not belong and did not have any particular label or identity. As one participant stated: I was still in a kind of ‘between worlds’ type thing. I didn’t know if I was coming or going or whatever. (Interviewee #6) You’re in no world, your life before caring is gone, your caring world is gone, you’re left with no world. (Focus group)
Loss of the caring world In this study, early experiences of loss of the caring world occur at the beginning of the post-caring/care transitions phase. They are multidimensional and include loss of identity as carer, loss of role as carer, loss of the close bond with the care receiver and loss of the social relationship with the network of healthcare professionals. Participants referred to the isolation that arose from loss of contact with support
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Evidence of the exclusive relationship between carer and care receiver also emerged, underscoring the losses of post-caring/care transitions. An emotional inter-dependency existed between the carer and the care receiver who did not want anybody else to care for him/her. The strength of the bond was also apparent in the fact that the carer was the only person to engage in certain activities for the care receiver. This closeness included practical, emotional and legal aspects. One interviewee exemplified this: So I used to do everything for her, shower her, clean her, dress her, feed her, which wasn’t the easiest thing to do because she was a very private person. It was so hard. (Interviewee #17)
Living in loss Living in loss was the second theme and refers to the process of being situated within a life of loss or continually experiencing the losses of post-caring/care transitions. A key feature of this was emotional reactions such as guilt, relief and a sense of urgency associated with feeling that they are still ‘on duty’. Loss of the carer allowance even before funeral expenses were addressed, absence of employment opportunities or acknowledgement of the value of the caring skills developed, all contributed to the sense of dismissal by the State and having no value. The combination of loss of income and sense of dismissal was perceived as a barrier to ‘moving on’ to a new world after the cessation of caring. Another barrier was the financial difficulties that accompany post-caring/care transitions in certain circumstances. In describing the experience of ‘living in loss’, complex emotional reactions were described. Various dimensions of guilt were experienced that largely centred on questioning the care they gave and whether they could have done anymore, such as fighting harder for services. One person stated: My GP is always saying to me ‘how often do I have to say to you that it wasn’t your fault he died – it was his time’. (Interviewee #1)
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While another recounted how: The thrush was that bad it was coming out his lip . . . I felt very guilty about that . . . should I have been more on top of them in the nursing home? (Interviewee #24)
Participants also outlined how they felt guilty because they had been thinking about their own situation as their loved one was dying: She’s dying there in front of you and you feel so guilty because what you’re thinking of is how are we going to make ends meet when my Carer’s Allowance stops. (Interviewee #10)
Nonetheless, guilt was also tempered with a measure of relief that the person was no longer suffering. As one person explained: I was happy for her because she was over all her misery; you know Alzheimer’s is such a sad disease. (Interviewee #11)
Several participants described how they felt that they were still on duty, which resulted in clock-watching or poor sleep patterns. A carer identified how: For a long time after he died, I never really slept . . . you’re not really asleep, you’re listening. . .. (Interviewee #25)
Some of the participants appeared to become ‘stuck’ in the losses of the post-caring/care transitions. You’re asking me how life has been. Totally hard and harsh because you have to pay the bills immediately . . . even though your heart is elsewhere. (Interviewee #26) Nobody gives you a bit of credit for what you’ve done. Even if I was to go for a job, I’ve got a gap of 4½ years on a CV. (Interviewee #6)
Moving on The final emergent theme was that of ‘moving on’ and participants in the study indicated that they had ‘moved on’ and out of the ‘trapped’ space between worlds. Thus, some participants no longer viewed themselves as being ‘worldless’ because they had begun to construct a new world. Facilitators for ‘moving on’ included family support and support from carers’ organisations. This was described by one participant: When there was no one else there for me, in some cases even family, the Carers Association were there. All I had to do if I felt particularly down was pick up the phone and there was someone at the other end. (Interviewee #3)
Means of caring for the self in post-caring/care transitions were described. These included keeping active and ‘getting out of the house’, for example by © 2014 John Wiley & Sons Ltd
enrolling on courses in the community. This is illustrated in the following comment: You have to start thinking positively . . . you can either sit there or go down or you can get out of the house and do something . . . You get involved in all these clubs and things but you have to, otherwise you’d crack up. (Interviewee #21)
A tendency for former carers to engage in other caring roles was also reported. Those who engaged in formal caring were split into two cohorts: (i) those who took up the role voluntarily because they found the caring experience very rewarding and made a change in their career and (ii) those who undertook formal caring out of financial necessity and this was the only job for which they had experience. One person stated that: It was such a wonderful, wonderful experience. It made me realise how unhappy I was in my previous job. This has put me on a new road and I have Mom to thank for it. It was such a wonderful feeling caring for her. (Interviewee #16)
Another participant recounted a more practical reason for entering caring: I went straight into the caring role again because I had to. I had to go out and start earning. It was the only place I could get some money. But caring for strangers is a very different thing altogether . . . it’s not the same, they’re not your own. (Interviewee #10)
Discussion In this study, the participants‘ description of themselves as being ‘worldless’ or ‘caught between worlds’ is a new conceptualisation of post-caring/caring transitions. Nonetheless, there are parallels with previous research. Primarily, the three processes of ‘loss of the caring world’, ‘living in loss’ and ‘moving on’ that symbolise being ‘between worlds’ represent an iterative transition that is in keeping with the literature explored earlier (Davies & Nolan 2006, Larkin 2009). The loss of the caring world that occurs at the beginning of the post-caring/care transitions phase mirrors Larkin’s (2009) notion of a ‘post-caring void’ as being the first stage of post-caring and encompasses acute loneliness, loss of purpose and lack of social network of healthcare professionals. However, the participants in this study reported that these profound feelings are not limited to the initial aftermath and can continue into the second or third year of post-caring. Much of the published research on the experiences of carers refers to the ‘burden’ of caring. 93
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With such a conceptualisation, it is easy to overlook how the loss of the uniquely close relationship with their family member contributes to the feelings of emptiness, loneliness and loss. The complex interplay of loss of burden and loss of loved one needs to be more fully understood. This may be a particularly important research focus for the future given that it may be a barrier for former carers in moving on to their new world post-caring. Loss was rendered complex by loss of a way of life and its attendant structures which included links with community nursing, general practitioners, hospital visits and social supports, all of which framed what was often an otherwise isolated world of caring. At a time when these carers were grieving for a loved one, they were also facing the unknown wherein their pre-caring lives could not return and all structures relating to their caring worlds were effectively withdrawn without delay. In this study, the second process of ‘living in loss’ was focused largely on the complex emotional reactions experienced following the death or nursing home placement of the care receiver. Although participants engaged in closure activities similar to those in Larkin’s (2009) second phase of ‘closing down the caring time’, there was little correspondence between them. In this study, closure activities could not be said to be a definitive phase, but rather spanned ‘loss of the caring world’ and ‘living in loss’. Nonetheless, engaging in closure activities was important in that they generated a range of emotional responses. Guilt as an emotional response following the death of a loved one was not a prevalent theme in the literature reviewed earlier. Although speculative, it is possible that guilt is contextual and related to the limited health and social care service supports for family carers in Ireland. Guilt feelings were often spoken of in the context of sourcing, securing and maintaining services for the care receiver amid a sense that he/she may not have received the best care possible. Argyle et al. (2010) refer to a culture of caring in Ireland. In this, there is an implicit expectation that family members have a responsibility for the quality of care provided. When the carer felt that he/she had not provided the best possible care, there was a sense of failure and guilt. Here, there are some parallels with the literature related to nursing home placement, where guilt is associated with and tempered by the quality of care in and attitudes towards the nursing home (Argyle et al. 2010, Gaugler et al. 2011). Although guilt co-existed with a sense of relief for many of the participants, there was also an apparent anger in many of the interactions. This 94
anger was directed largely at health and social care services that were seen to have failed the care giver and care receiver. Thus, carers were left with an emotional legacy that in some instances was a factor in becoming ‘stuck’ in the ‘living in loss’ phase of post-caring/care transitions. This was further exacerbated by the perceived dismissal of their expertise and the contribution they had made to the health system and the negative financial consequences of caring. As Irish and government policies across different health systems seek to reduce dependency on institutional care through various incentives to promote home-based care (OECD 2005, 2011, National Economic and Social Forum 2009), there is increasing risk to carers facing uncertainty and poverty post-caring. In an economic climate of high unemployment, there is little prospect of returning to pre-caring jobs or making new careers. Nonetheless, some of the participants in the current study had begun to ‘move on’, re-formulating their interests, daily activities and their life roles. This process reflects Larkin’s (2009) phase of ‘constructing life post-caring’. Families, interests, friends, paid employment and further caring activities were important in constructing a life post-caring. Keeping active, staying connected and engaging in community had a mutually beneficial effect by making participants feel valued, which in turn had a positive impact on their sense of health and well-being. Further caring activities were a notable feature of the participants in this study. While some could be described as ‘serial carers’ in that they engaged in cyclical caring and post-caring primarily due to a sense of family obligation (Larkin 2009), many actively sought further caring roles. These included both voluntary and paid roles, such as caring for grandchildren, mentoring other carers, engaging with carer and voluntary organisations or formally seeking employment within the care sector. Some of this can be attributed to a sense of worth generated by the notion of making a valuable and valued contribution (Hirst 2005, Larkin 2009). The relationship between serial caring and ‘moving on’ needs to be explored further and debated. Factors contributing to serial caring may be a complex and contradictory mix of discovering skills, having sense of purpose, no longer possessing skills for other kinds of work and needing to have an income. Maintaining social activity while still caring may be a factor in the ability to move on that may in turn influence how the ‘moving on’ process unfolds (Hyde & Janovic 2003). © 2014 John Wiley & Sons Ltd
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Conclusions and recommendations This study, the first of its kind in Ireland to focus on the experiences and needs of former family carers, supports an earlier conceptualisation of a post-caring trajectory (Larkin 2009). There was congruence between ‘post-caring void’ and the ‘loss of the caring world’ and ‘constructing life post-caring’ and ‘moving on’. What is of particular value is that to date, Larkin’s (2009) work was the only one that focused on post-caring following the death of the care receiver. This study begins to address the dearth of data on post-caring/care transition experiences due to death. The findings point to possible increased isolation and an extension of the social, emotional and financial burden experienced by carers in their post-caring worlds. From the findings, continuing support through extending allowances for a set period postcaring and developing support programmes through carers associations would seem to be important facilitators in supporting the ‘moving on’ phase. However, a greater understanding of post-caring support needs and interventions to address them is warranted. There were limitations in respect of the sampling approach taken in this study. Recruitment to the study was primarily undertaken through carers’ organisations, which meant that former carers who are not known to these organisations were not included. The diversity of ethnic groups living in Ireland was not represented in the study sample and although men constitute 40% of carers in Ireland (Central Statistics Office 2007), they are under-represented in carer groups and in this study, where there were only seven. People who had experienced loss due solely to nursing home placement were under-represented and this may reflect the strategy for recruitment and the membership profile of carers’ organisations. A possible limitation may also be that conflicted relationships did not feature in the findings as one might expect. This may be due to the nature of the recruitment process. Nonetheless, the findings depict the lives of former carers as challenging, where some find themselves stuck between worlds. Support for re-connecting with communities is an important enabler for moving on.
Acknowledgements This work was funded by the Irish Research Council for the Humanities and Social Sciences (IRCHSS) and Care Alliance Ireland. The research team wish to acknowledge and thank the family carers who partici© 2014 John Wiley & Sons Ltd
pated in this research and Clare Duffy, Social Policy Officer of the Carers Association for her assistance.
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