ORIGINAL RESEARCH
How women caregivers deal with their own long-term illness: a qualitative study Mercedes Martinez-Marcos & Carmen De la Cuesta-Benjumea Accepted for publication 23 November 2013
Correspondence to M. Martinez-Marcos: e-mail: [email protected] Mercedes Martinez-Marcos DUE MSN Professor Department of Nursing, University Aut onoma of Madrid, Spain Carmen De la Cuesta-Benjumea MSc PhD Professor Department of Health Psychology, Faculty of Health Sciences, University of Alicante, Spain
M A R T I N E Z - M A R C O S M . & D E L A C U E S T A - B E N J U M E A C . ( 2 0 1 4 ) How women caregivers deal with their own long-term illness: a qualitative study. Journal of Advanced Nursing 70(8), 1825–1836. doi: 10.1111/jan.12341
Abstract Aim. To explore the strategies used by women caregivers to deal with their own chronic health conditions. Background. Providing care has a negative impact on the physical and mental health of caregivers. When caregivers suffer chronic health problems, it increases the burden of caring, making them more vulnerable and less likely to look after their own health. Design. Qualitative study carried out between April 2010–December 2011. Method. Thirty-nine women with long-term illness who care for dependent family members took part in the study, 23 in semi-structured interviews and 16 in two focus groups. The data were analysed using the grounded theory method. Findings. Women caregivers feel that they cannot let their own chronic health problems prevent them from caring for others. Dealing with their health problems enables them to provide the time and effort their family member requires. They do this by: (1) normalizing their chronic conditions; (2) neutralizing the effects of their long-term illness; and (3) forgetting that they are chronic sufferers. Conclusions. This study analyses the strategies that family caregivers use to deal with their own chronic health problems, so that they can continue to provide family care. It shows that, to forget about their own illnesses, these women must take charge of them. Nurses need to recognize and value the strategies that caregivers use to deal with their own health problems. They also need to encourage them to use the most effective strategies, to improve their quality of life. Keywords: caregivers, long-term illness, family care, grounded theory, nursing, qualitative research
Introduction The significant increase in chronic conditions has become a top public health priority. These conditions have, in turn, led to increased mortality and disability worldwide and © 2013 John Wiley & Sons Ltd
require psychosocial interventions so that people can deal with them (World Health Organisation 2011). In Europe, chronic diseases cause 86% of deaths and affect 40% of the population over the age of 15 (Busse et al. 2010). In Spain, 513% of people over the age of 16 state that they 1825
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Why is this research or review needed? • The increase in chronic conditions have led to increased mortality and disability worldwide requiring psychosocial interventions so that people can deal with them. • Caregivers who suffer from chronic health problems are vulnerable find it more difficult to fulfil their roles and their health tends to worsen as a result. • Most of the research has focused on the impact that caring has on the health of caregivers, with little attention to female caregivers suffering from chronic conditions them-
caregiver burden, anxiety and depression are among those most studied (Pinquart & S€ orensen 2007). In addition to these problems, women caregivers suffer from other chronic ailments such as angina, arthritis and hypertension, which are directly linked to their roles as caregivers (Ward-Griffin & McKeever 2000, Arnsberger et al. 2012). The emphasis placed on studying the psychological problems resulting from caregiver burden has, in turn, limited the understanding of how caregivers look after themselves while they are caring for dependents (Furlong & Wuest 2008).
selves.
Background What are the three key findings? • Caregivers use certain strategies to deal with their chronic conditions, so that they are still able to focus their energy on caring for dependent family members. • Caregivers normalize their chronic conditions, neutralize their effects and they manage to forget about their illness so that it does not add to existing worries in their lives. • Women who care for dependent family members give greater priority to their role as caregivers than their own chronic conditions.
How should the findings be used to influence policy/ practice/research/education? • Public policies should be developed to provide the social and community support that caregivers need to cope with and self-manage their own chronic health conditions. • Nurses should recognize the efforts of caregivers to manage their chronic conditions and recommend strategies that will improve their quality of life, while discouraging those that increase their burden. • Research is needed into caregivers suffering chronic conditions, the different trajectories their illnesses can take and the implications that these may have on themselves and on the care they provide.
have a long-term illness (Ministerio de Sanidad y Polıtica Social 2009). Research studies show that it is usually women who are and will continue to be the family members who care for dependents (Lee & Gramotnev 2007, Riedel & Kraus 2011). These women find themselves in poorer health and suffer from more chronic conditions than women who are not caregivers (Donelan et al. 2001). When it comes to family care, studies highlight that people who care for a dependent family member have a poorer perception of their own quality of life, increased morbidity and even a higher rate of mortality (Pinquart & Sorensen 2003, Borg & Hallberg 2006, Schulz & Sherwood 2008). Problems relating to 1826
Research about long-term illness has explored the impact that illnesses have on the lives of people and has highlighted that they lead to biographical disruption (Bury 1982) and loss of identity in sufferers (Charmaz 1983). Different studies have shown that people suffering from chronic ailments work at managing their illness to incorporate them into their lives (Corbin & Strauss 1985, Kralik et al. 2005, H€ ornsten et al. 2011). Fitting the illness around a person’s life is a complex process that varies depending on the kind of illness and the individual circumstances of sufferers. It is the context of the illness that has the most influence on how it is incorporated into the sufferer’s daily life (Giddings et al. 2007, Whittemore & Dixon 2008). Studies suggest that people who live with long-term illness adapt and adjust to make their lives easier (Koch & Kralik 2001, Dubouloz et al. 2010). On the other hand, it has also been proved that long-term illness follow a certain pattern and that people with a chronic condition, along with their families and health professionals, have to work to keep it under check (Corbin & Stauss 1991). The experiences of women living with a long-term illness have been analysed, with a particular emphasis on their age and the stage that their illness has reached (Giddings et al. 2007, Roy & Giddings 2012). The experience of middleaged women with chronic conditions is described as a dynamic transition that moves from being extraordinary to ordinary before they finally integrate the illness into their lives (Kralik 2002). It has been shown that women have the flexibility to accommodate their illness into their lives (Macintyre et al. 1999, Adili et al. 2010). Older women, however, do not find themselves taken aback by illness. It does not represent a crisis and they accept it in a natural way (Roy & Giddings 2012). They attribute the functional limitations that may be caused by chronic conditions to age or the typical problems of becoming older (Shawler & Logsdon 2008, Shearer et al. 2009, Roy & Giddings 2012). © 2013 John Wiley & Sons Ltd
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Studies on the experiences of caregivers with chronic health problems reveal that they are more vulnerable, experience more difficulties in providing care and neglect their own needs. As a result, their own health tends to suffer (Navaie-Waliser et al. 2002, Tommis et al. 2009, Ostwald 2009). However, most of the research has focused on the impact that caring has on the health of caregivers, with a particular emphasis on psychological problems such as anxiety and depression, which have a knock-on effect on the care they provide. Research has also shown that caring for a dependent relative has positive aspects such as the satisfaction that caregivers experience when providing care, the reciprocity and mutuality between the caregiver and the care recipient and the positive meaning that caring has for the caregiver (Nolan et al. 1996, Cohen et al. 2002, Roe 2011). Caregivers’ quality of life and well-being improves when they feel rewarded for their activity, receive affection from the person they are caring for and receive social support (McMunn et al. 2009, Tolkacheva et al. 2011). Nevertheless, little attention has been paid in research studies to female caregivers suffering from chronic conditions themselves and little is known about how they go about their daily lives and what mechanisms they use to look after themselves and their families.
The study Aim To examine and describe the strategies used by women caregivers of dependents to deal with their own chronic health problems.
Design The present study follows the constructivist grounded theory approach (Charmaz 2006). This approach, as opposed to the classical grounded theory method, takes into account the context of the research itself and the position that the researchers have in it (Charmaz 2009). It considers multiple social realities and recognizes that knowledge is interpretative and constructed with the participants of the study (Charmaz 2006). Data collection and analysis run concurrently; data are explained via its interpretation and conceptualization (Charmaz 2000).
Participants Thirty-nine women with controlling their illness who care for dependent family members volunteered to take part in © 2013 John Wiley & Sons Ltd
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the research and were fully informed of all aspects of the study. The inclusion criteria were: (1) caring for a dependent relative for more than 1 year; and (2) suffering from at least one diagnosed long-term illness. The majority were wives and daughters with a basic level of education. Their ages ranged from 50–78 and the most common health problems reported were arthritis and arterial hypertension (see Table 1). Participants for the interviews were contacted with the help of healthcare professionals working in healthcare centres. A caregiver association and health centre staff helped to contact participants for the focus groups. Participants in both interviews and focus groups were purposefully sampled (Morse 1989). As the study developed, theoretical sampling took place to reach the saturation of categories (Strauss & Corbin 1998). Hence, caregivers with different family relationships, educational background and
Table 1 Participant demographic profile (n = 39). Age (years) 40–50 51–60 61–70 >70 Education None Primary Secondary University Relationship Daughter Wife Daughter-in-law Mother Niece Duration of caregiving 1–5 years 6–10 years >10 years Care-giving situation Solo Formal help 2–4 hours/day Day centre Long-term illness Hypertension Arthritis Cardiovascular disease Osteoporosis Diabetes Breast cancer COPD Asthma Chronic fatigue syndrome
1 14 12 12 10 19 8 2 21 14 1 2 1 16 17 6 12 16 11 26 19 10 9 8 3 2 2 1
COPD, Chronic obstructive pulmonary disease. 1827
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long-term illness were searched and the interview guide was modified to saturate emerging categories.
Box 2 Guide for focus group
Data collection A total of 23 semi-structured interviews and two focus groups were conducted between April 2010–December 2011. The interviews lasted between 50–90 minutes and were recorded and transcribed in full. The time and place were chosen by the participants. The two focus groups were carried out after the interviews to obtain rich data and refine the categories emerging in the interviews (Morgan & Krueger 1993). These comprised six and 10 people respectively and were carried out at a day centre, lasting for between an hour-and-a-half and 2 hours. Participants who took part in the interviews and in focus groups were asked about their daily lives and the strategies that they used to manage their chronic health conditions. Interviews began with exploratory questions that became more specific as the codes and categories developed. During the focus groups, rich data were obtained about how participants kept control of their illnesses and their experience of living with their chronic condition while caring (Boxes 1 & 2). Data collection ended with the saturation of categories.
Box 1 Guide for interview I am interested in knowing about the ways in which, people like you, that is, women caregivers with a chronic health condition, manage your everyday lives. I would like to hear about your experience. To begin with, I would like to know about what is a regular day for you. Prompt questions. What do you do to care for yourself? What kind of difficulties do you face? Do you use other means to manage or treat your health problems? When do you call a health professional? What worries you most about of your health situation? How do your health problems influence the care you provide for your dependent relative? What do you do if you feel unwell due to your chronic health condition? Is there anything else you would like to add?
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Please start by telling us your name, something about the person you care for, how long you have been caring for them and the chronic health condition you suffer from. Could you tell me about the experience of living with a chronic health problem and caring for a dependent relative? Prompt questions. Could you tell us about how you care for yourself? Could you comment on the things you do to control your illness? How do you manage the symptoms of your illness? How does your health condition affect the care you provide? Is there anything else you would like to tell us?
Ethical consideration The study was approved by the hospital research ethics committee and the management board of the healthcare areas involved. To preserve anonymity, pseudonyms are used in the text below.
Data analysis The analysis was conducted as the data were collected. Three kinds of codification were carried out: open, focused and selective. Open codification revealed the codes relating to strategies used to deal with long-term illness, such as being okay and taking medication. Focused codification, on the other hand, studied the codes in different categories, such as rationalizing, keeping an eye on the illness and minimizing the illness. The categories that captured the differences in the participants’ behaviour were then studied in more detail (selective codification). Line-by-line analysis using the constant comparison method was performed. The constant comparison method involves comparing statements and incidents within and between interviews and the focus group; analysing for similarities and differences in data leading to the development of categories (Charmaz 2006). As the coding preceded insights, hunches and questions were evoked, this guided the continuing data collection. Analytical memos were drawn up throughout the study, which were used to develop and © 2013 John Wiley & Sons Ltd
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define the categories and diagrams were used to visually represent the relationships between them (Charmaz 2006). Theoretical saturation was reached after data collection and data analysis.
Women caregivers and long-term illness
Table 2 Strategies used by female caregivers to deal with longterm illness. Strategies
Strategy-related actions
Normalize chronic conditions
Feel healthy and capable Rationalize their conditions and symptoms Grow used to symptoms Pursue medical treatment Keep an eye on their illness Find ways around the disruption caused by medical conditions Focus on family care Keep busy Minimize chronic conditions
Validity and reliability/rigour This study followed Guba and Lincoln (1985) criteria of credibility, transferability, dependability and confirmability. In addition, the criteria of credibility, originality, resonance and usefulness were used, according to constructivist grounded theory (Charmaz 2006). The categories and subcategories that emerged in this study are credible, the way that the data were gathered and the detailed analysis that followed, contribute to that credibility. The use of textual references and their conceptualization, as well as the clear description given of the different stages of the research, contribute to the credibility of the results and their transferability. Throughout this study, a field journal was kept to record thoughts on theoretical elements and data analysis, as well as any ideas that arose throughout the analysis. These notes and subsequent discussions with colleagues on them have contributed to the study’s dependability and confirmability. The literature review was conducted once key categories had emerged, to guarantee their relevance. Discussion and consensus were also used to agree on the categories. Originality, resonance and usefulness (Charmaz 2006) of the present study were shown by strategies that had not previously been described. Resonance and credibility were achieved during field works as caregivers validated and developed the evolving findings. These findings will help nurses recognize caregivers’ experience in dealing with their chronic conditions while caring and contributing to their well-being.
Neutralize the physical effects of chronic conditions Forget about their chronic conditions
Normalizing their chronic conditions The women taking part in the study managed to turn their chronic conditions into a normal and natural part of their daily lives. By normalizing their conditions in this way, they integrated their illness and its treatment into their daily lives. Participants normalized their conditions by using three mechanisms: (a) defining themselves as healthy and capable beings; (b) rationalizing their condition and its symptoms; and (c) becoming used to their illness. In this way, they changed the way they perceived their illnesses. Therefore, this is fundamentally a cognitive strategy. The caregivers do not see themselves as ill women. They feel healthy as they are able to carry out their domestic chores, continue to work and provide constant care for their family member. A participant said: I am the one who does all the work in my house – I buy the food, look after my mother, I do my work – I am fine and there is nothing wrong with me. (Marıa)
Findings Women caregivers feel that they cannot let their own chronic health problems become an obstacle that stops them from carrying out their care-giving role. As a result, they develop strategies that allow them to deal with the chronic nature of their own conditions and the problems that they may cause. Three strategies were identified during data analysis: (1) normalizing chronic conditions; (2) neutralizing the symptoms of their chronic conditions; and (3) forgetting about their conditions (Table 2). By making sure that their chronic conditions do not take centre stage in their lives, caregivers are able to focus all of their energy and efforts on looking after their dependent family member. © 2013 John Wiley & Sons Ltd
During the interviews and focus groups, participants discussed what it meant to be ill. They stated that being ill means that they are no longer self-sufficient and may need to rest and to be in bed. This is a characteristic of the person they care for and perhaps accounts for their meaning of being ill. The participants rationalize their chronic conditions and its symptoms. They understand that their health problems are normal as they are common problems shared by other women in a similar position, their neighbours, their family members and perhaps even the person they are looking after. Long-term illness is, for some, inherited and therefore an integral part of their lives. As one of the participants stated: 1829
M. Martinez-Marcos and C. De la Cuesta-Benjumea Because my mother had it and so I guess it’s totally inherited, cos they also have high blood pressure. I imagine that it’s a chronic condition that is inherited, so it’s a lifetime thing, but I feel fine. (Ana)
Older participants in the study said that old age and chronic conditions go hand in hand and are a natural part of life: I have the logical problems of someone of my age: my legs hurt and when my shoulder isn’t painful, my back is. (Rosa)
When their long-term illness produce physical symptoms, these are also rationalized. When participants experience symptoms such as pain and inflammation, for example, they refer to them as days they feel better or worse. However, they justify the symptoms to themselves as common complaints due to external factors such as the weather or the cold. They wait until the bad spell passes and they get better. Finally, when the illness flares up and the sufferer has not been able to rationalize (normalize) it, she simply gets used to its physical symptoms. By doing this, she sees the symptoms as the normal physical manifestations of her illness. Even though the symptoms cause pain or suffering, she sees it as part of her life. In this way, the caregivers believe that they have no option but to live with their symptoms: I am in pain every day, but the thing is you get used to the pain. Unfortunately, you get used to it. (Sara).
Neutralizing the effects of their chronic conditions Caregivers counteract the effects of their chronic conditions and resolve the recurring problems that they face on a daily basis efficiently so that they can continue fulfilling their duties as a caregiver. They: (a) keep up with their medical treatment; (b) keep an eye on their illness; and (c) find ways to get round the disruption caused by their chronic conditions. Whereas the previous strategy discussed is cognitive in nature, this one is purely instrumental. Persevering with medical treatment is the main mechanism used to regulate and control the effects of their illness. As one participant explained: I go to the rheumatologist and have everything under control. I take a tablet every day. Yes, I take a tablet to keep it all under control. (Asunci on)
The caregivers see their treatment as their main way of controlling their illness and in focus groups the importance of adhering to the treatment reached consensus, experiences
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of health problems due to not following treatment were discussed. They know and recognize the names of prescribed medicines and how to take them. They become used to the recommended doses and their treatment becomes routine as they incorporate it into their everyday life. They are strictly committed to taking their medicines, as one participant explained. They recognize that the treatment is lifelong and must be adhered to and they make sure that they never run out of their medication. The participants are aware that their own lives which can be hectic and stressful can lead to mistakes with their own treatment, such as taking their medication twice or forgetting to take it at all. To avoid this, they prepare their medication at night time, use pillboxes and write down the names and doses of medicines on boards. They understand that forgetting to take their medication can disrupt their chronic conditions: I leave my tablets prepared at night time. At night I get them already so that I don’t forget them and I leave them on the worktop. (Dolores)
Caregivers realize that their chronic conditions have no cure, but they can, in their own words, be slowed down or brought to a standstill. However, they also understand that they can worsen and, if this should happen, their health would be compromised and they would not be able to look after their dependent family member so, they keep a close eye on their illness and this is the second mechanism they use to neutralize their illness. They find out information about their chronic conditions, so that they can make decisions that stop their illness from interfering in their lives. Discrepancies were voiced in focus groups about the way participants monitor their health, with young participants using closer surveillance mechanisms than older participants. They make sure that they attend the consultations and periodical reviews organized by healthcare professionals and undergo the diagnostic tests that are recommended. This keeps them informed about the stage their illness has reached and whether it is necessary to adjust their medication: I go to the nurse and she looks at it for me and, since recently its caused me no problems, she says to me, come every 2 months. I see that it’s okay and how I am keeping an eye on it. (Ana)
The women also keep an eye on themselves, with regular self-assessments of, for example, their blood sugar levels and blood pressure levels. And they frequently consult healthcare professionals about their chronic conditions:
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JAN: ORIGINAL RESEARCH I check my blood sugar levels with the machine and I note it down as I go. Then, when I go to the doctor, I take the book with me. He looks at it and can see how it is. (Silvia)
When chronic complaints flare up and symptoms such as dizziness, feeling generally unwell and headaches appear, the women check their figures and take measures to keep symptoms under control. They regulate medication doses, are stricter with their diet and try to relax, to neutralize the effects of their condition and correct imbalances: I have just checked my blood pressure and it was 17. I have bought myself a machine and I take it myself. I have just taken the tablet when the doctor told me to – when I am feeling dizzy…when it goes past 17 I take the tablet and it goes away. I have another kind that I put under my tongue. In a little while, I’ll check my blood pressure again and it will probably have gone down to 14 or some-
Women caregivers and long-term illness
The third mechanism that participants use to forget about their chronic conditions is by minimizing them. When talking about their illnesses, they say they have slightly high blood sugar or slightly high or low blood pressure, but they do not consider them to be important. They minimize the importance of their own health issues by comparing them with the health problems faced by the family member they care for, which are far higher on their list of priorities. Seeing their own problems as not so important – or not at all important – makes it easier to forget about them and dedicate themselves to looking after their dependent. As one participant said: I don’t place much importance on my own problems, you look around and there’s nothing wrong with you, you have people that depend on you. (Mariam)
thing. (Teresa)
Discussion Forgetting about their long-term illness Women taking part in the interviews said that they do not think about their health problems and forget about them. They have developed mechanisms to ensure that their chronic conditions do not play a lead role in their lives, as this would add to their many existing worries. Three mechanisms are used to help caregivers forget about their chronic conditions: (a) focusing their attention on family care; (b) keeping busy; and (c) minimizing their health problems. The caregivers describe how they focus their attention on the daily care of their dependent family member, resolving the unpredicted events that can arise from this and on other needs in the home. One point that arose from the focus groups was that the carers lead a life dedicated to others and that they see themselves as last on their list of priorities. Therefore, they forget about the chronic conditions that they suffer from. As one participant said: This is my life. It just revolves around another person…Of course you end up forgetting about what’s wrong with you. (Mariam)
Keeping busy is the second mechanism that allows caregivers to forget about their long-term illness. In the interviews, participants commented that they always try to keep busy with activities such as sewing, crocheting and reading. Keeping busy enables them to cope with their concerns, as they have no time to think about what might happen to them in the future, when their family member no longer needs them or their condition worsens and they can no longer deal with it. Their worries are hidden by their activities.
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Studies included in the research literature provide substantial evidence for the negative effects that caring for a dependent family member has on caregiver’s health. Recent research has shown that caregivers suffer from poorer health than the general population (Hirst 2004), show higher rates of morbidity, including chronic problems and take less care of their own health (Schulz & Sherwood 2008, Kim et al. 2012). Women caregivers are increasingly older and suffer from chronic health problems that may be aggravated by caregiving (Lee & Gramotnev 2007, Berg & Woods 2009). Despite this, they continue to care for dependents for many years (Pinquart & Sorensen 2004), in conditions that are more damaging to their own health. People who live with long-term illness use different strategies to adjust, adapt and integrate their illnesses into their lives (Kralik et al. 2001, Whittemore & Dixon 2008). The normalization process stands out as a particular strategy that people use to minimize the impact of their illness to carry on with typical family activities (Knafl & Deatrick 1986, Robinson 1993, Deatrick et al. 1999). Women with chronic conditions seek normality after an initial phase of agitation and aim for a situation where their illness can fit in with the rest of their lives (Kralik 2002). Caregivers, on their part, achieve normality, by organizing their own care as the needs of dependent family members change and fluctuate (Furlong & Wuest 2008). The contribution that our study makes to the research is that it shows that caregivers normalize their chronic conditions by integrating them into family care in a natural way so they do not interfere with
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the attention and care that their family member needs from them. Townsend et al. (2006) and Leach and Schoenberg (2008) have shown that people normalize their chronic health problems by using cognitive strategies that change the way they view their conditions. Our study shows that, to normalize their conditions, participants change the perceptions they have of themselves. In other words, they see themselves as healthy women who are capable of taking care of their dependent family member. Health, under their point of view, is the ability to function and be independent. They reflect the lay concepts of health, widely documented in the literature (Shaw & Schultz 2004, Shearer et al. 2009). To normalize their chronic health conditions, participating caregivers must find reasons that show that their chronic conditions are a normal part of their lives. As previous studies have shown, the ageing process and inherited chronic conditions were factors that helped them to explain and normalize their illnesses (Sanders et al. 2002, Giddings et al. 2007, Leach & Schoenberg 2008). The present study has shown that caregivers take certain steps to neutralize the effects of their chronic conditions and be able to continue fulfilling their role as a caregiver. These steps include persisting with their own medication as a means of controlling their illness, as other studies have already shown (Loeb 2006, Morris et al. 2011). Caregivers find this to be an efficient mechanism that requires minimum time and effort, while allowing them to continue providing care. Another mechanism used by caregivers to neutralize their chronic health issues is by keeping an eye on their illness, to control and manage it (Loeb 2006, Leach & Schoenberg 2008). Our study shows that female caregivers turn to healthcare services to monitor their health, they undergo diagnostic tests, they gather information about how advanced their health problem is and they accept necessary adjustments to their treatment. It is possible that, by monitoring their illness in this way, they reduce the time needed to control their health problems and can spend that time on what they see as more important tasks. Keeping an eye on their condition also makes it easier for them to manage their health and regulate their medication and diet themselves. There has been a tendency to assume that caregivers can neglect their own health to focus on their dependent family members (Forssen et al. 2005, DiGiacomo et al. 2011). However, those who take care of their chronic conditions employ strategies to manage their symptoms, to feel well, to continue their social lives and to maintain a positive identity (Townsend et al. 2006). Our study has shown that 1832
caregivers suffering from long-term illness do indeed look after themselves by neutralizing the effects of their illness, keeping an eye on it and taking medicines to control it. They manage the disruption caused by their condition in a responsible way; they worry that if their own health deteriorates, there will be no one to look after their dependant relative. At the same time, they must forget about the chronic nature of their illness, separate themselves from it and prioritize their role as a caregiver. This enables them to fulfil their moral obligation of caring for the dependant family member and the rest of the family (Pratt et al. 1987, Stein et al. 1998). Family caregivers do take care of themselves, not for their own well-being, but so that they can continue to provide care (Lilly et al. 2012). Our study reveals the precise mechanisms they employ to achieve this. Research into caregiving has focused on the burden of care and the stress coping mechanisms used by caregiver. The strategies described in this study contribute to the understanding of the way that caregivers balance their own healthcare needs with their relatives’ care-giving demands. This has not previously been described in the literature and can contribute to the development of a holistic care pathway based on caregivers’ perspectives as suggested by Noble et al. (2012). Research studies have pointed out that nurses are in a privileged position to help caregivers learn how to deal with the demands of care giving and to promote their health (Ducharme et al. 2011), to seek support and use the resources available (Honea et al. 2008, Reinhard et al. 2008) and to strengthen their effective coping strategies (Yu et al. 2013). The findings of the present study will help nurses assist caregivers to take strategic decisions on the best way to cope with their chronic health processes and to respond to their relatives’ care-giving demands, without putting their health at risk.
Limitations The limitations of this study come from presenting the women caregivers’ perspectives and from their profiles and situations. Although we aimed to find participants from a variety of socio-economic levels, most came from homes with low incomes and basic levels of education, representing family caregivers in Spain as a whole. The caregivers in this study are responsible for the permanent care of their family member and do not share this responsibility with other family members. It is plausible that the strategies used by caregivers suffering from chronic conditions will be different in other socio-economic situations and when the care © 2013 John Wiley & Sons Ltd
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of the family member is shared. The chronic conditions suffered by the participants in our study were stable, allowing them to be independent and self-sufficient. This limits the scope of our results.
Conclusion The health of caregivers has been a focus of interest and research in the literature and studies have highlighted the positive aspects of caregiving (Hilgeman et al. 2007, Roe 2011, Shim et al. 2011). However, little attention has been paid to how caregivers address and manage their own health needs. This study analyses the strategies adopted by family caregivers to deal with their chronic health problems so that they can continue fulfilling their duties as a caregiver. It shows that to be able to forget about their illnesses, they must first deal with them. Public policies and strategies aimed at caregivers suffering from long-term illness must place the emphasis on identifying these caregivers, giving them access to health care and providing them with the support and resources that they need so that they can deal with their chronic health conditions. Nurses should value and recognize the efforts of family caregivers to manage their chronic conditions and recommend effective strategies that will improve their quality of life, while discouraging those that are not effective and are damaging to their health. In their daily dealings with caregivers, nurses should make them aware of the way they approach family care so they can make adjustments for their well-being. Healthcare professionals could bring public attention to unfair situation where caregivers with chronic conditions may find themselves, due to the lack of social support and the lack of health and social care suitable for their needs. More research is needed into family caregivers suffering long-term illness, the different trajectories their illnesses can take and the implications that these may have on themselves and on the family care they provide. In addition, future studies should include other caregiver groups, such as men or younger adults with long-term illness.
Acknowledgements We thank the caregivers who generously shared their experiences with us and the primary healthcare professionals who helped us to contact them. We are also grateful to the management of the day centre that facilitated our contact with the caregivers and provided us with a meeting point for discussion groups. Many thanks to the reviewers for their insightful comments. © 2013 John Wiley & Sons Ltd
Women caregivers and long-term illness
Funding This project was financed by the Health Research Fund of the Spanish Ministry of Health and Consumer Affairs P10/ 00558 and the Foundation for Biomedical Research at the Puerta de Hierro University Hospital in Majadahonda, Madrid.
Conflict of interest No conflict of interest has been declared by the authors.
Author contributions The authors are responsible for the idea behind this study and its structure, as well as the data analysis and the preparation of the manuscript. MM collected all the data. All authors have agreed on the final version and meet at least one of the following criteria [recommended by the ICMJE (http://www.icmje.org/ethical_1author.html)]:
• •
substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data; drafting the article or revising it critically for important intellectual content.
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JAN: ORIGINAL RESEARCH Morse J. (1989) Strategies for sampling. In Qualitative Nursing Research. A Contemporary Dialogue (Morse J., ed.), Aspen, Rockville, MD, pp. 117–132. Navaie-Waliser M., Feldman P.H., Gould D.A., Levine C., Kuerbis A.N. & Donelan K. (2002) When the caregiver needs care: the plight of vulnerable caregivers. Journal of Public Health 92, 409–413. Noble H., Kelly D. & Hudson P. (2012) Experiences of carers supporting dying renal patients, managed without dialysis. Journal of Advanced Nursing 69(8), 1829–1839. Nolan M., Grant G. & Keady J. (1996) Understanding Family Care. A Multidimensional Model of Caring and Coping. Open University Press, Buckingham, Reino Unido. Ostwald S.K. (2009) Who is caring for the caregiver? Promoting spousal caregivers health. Family & Community Health 32(1 Suppl), S5–14. Pinquart M. & Sorensen S. (2003) Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychology and Aging 18(2), 250–267. Pinquart M. & Sorensen S. (2004) Associations of caregiver stressors and uplifts with subjective well-being and depressive mood: a metaanalytic comparison. Aging and Mental Health 8(5), 438–449. Pinquart M. & S€ orensen S. (2007) Correlates of physical health of informal caregivers: a meta-analysis. Journals of Gerontology Series B-Psychological Sciences & Social Sciences 62(2), 126–137. Pratt D., Schmall V. & Writht S. (1987) Ethical Concerns of Family Caregivers to Dementia Patients. The Gerontologist 27 (5), 632–638. Reinhard S., Brooks-Danso A., Kelly K. & Mason D. (2008) Executive summary: Supporting family caregivers. American Journal of Nursing 108(9), 6–12. Riedel M. & Kraus M. (2011) Informal Care Provision in Europe: Regulation and Profile of Providers. Retrieved from http://www. ceps.eu/book/informal-care-provision-europe-regulation-and-profileproviders on 5 February 2012. Robinson C.A. (1993) Managing a life with a chronic condition: the story of normalization. Qualitative Health Research 3, 6–28. Roe B. (2011) Editors Choice. Journal of Advanced Nursing 67, 2293. Roy D.E. & Giddings L.S. (2012) The experiences of women (65– 74 years) living with a long-term condition in the shadow of ageing. Journal of Advanced Nursing 68(1), 181–190. Sanders C., Donovan J. & Dieppe P. (2002) The significance and consequences of having painful and disabled joints in older age: co-existing accounts of normal and disrupted biographies. Sociology of Health & Illness 24(2), 227–253.
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Women caregivers and long-term illness Schulz R. & Beach S.R. (1999) Caregiving as a risk factor for mortality: the caregiver health effects study. Journal of the American Medical Association 15, 2215–2219. Shaw R. & Schultz S. (2004) Views of health in the lay sector: a compilation and review of how individuals think about health. Health 8(4), 395–422. Shawler C. & Logsdon D. (2008) Living vigilant lives with chronic illness: stories from older low-income minority women. Health Care for Women International 29(1), 76–84. Shearer N.B.C., Fleury J.D. & Reed P.G. (2009) The rhythm of health in older women with chronic illness. Research & Theory for Nursing Practice 23(2), 148–160. Shim B., Landerman L.R. & Davis L.L. (2011) Correlates of care relationship mutuality among carers of people with Alzheimers and Parkinsons Disease. Journal of Advanced Nursing 67, 1729– 1738. Stein C., Wemmerus V., Ward M., Gaines M., Freeberg A. & Jewell T. (1998) Because they’re my parents: an intergenerational study of felt obligation and parental caregiving. Journal of Marriage and Family 60(3), 611–622. Strauss A. & Corbin J. (1998) Basics of Qualitative Research. Techniques and Procedures for Developing Grounded Theory. SAGE, Thousand Oaks, CA. Tolkacheva N., Broese van Groenou M., De Boer A. & Van Tilburg T. (2011) The impact of informal care-giving networks on adult children’s care-giver burden. Ageing & Society 31, 34–51. Tommis T., Catherine A.R., Seddon R., Woods S. & Perry J. (2009) Carers with chronic conditions: changes over time in their physical health. Chronic Illness 5, 155–164. Townsend A., Wyke S. & Hunt K. (2006) Self-managing and managing self: practical and moral dilemmas in accounts of living with chronic illness. Chronic Illness 2, 185–194. Ward-Griffin C. & McKeever P. (2000) Relationships between nurses and family caregivers: partners. Advances in Nursing Science 22(3), 89–103. Whittemore R. & Dixon J. (2008) Chronic illness: the process of integration. Journal of Clinical Nursing 17, 177–187. World Health Organisation (2011) Global status report on noncommunicable diseases. Retrieved from http://www.who.int/ nmh/publications/ncd_report2010/en/ on 28 April 2012. Yu Y., Hu J., Efird J.T. & McCoy T.P. (2013) Social support, coping strategies and health-related quality of life among primary caregivers of stroke survivors in China. Journal of Clinical Nursing 22(15–16), 2160–2171.
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How women caregivers deal with their own long-term illness: a qualitative study Mercedes Martinez-Marcos & Carmen De la Cuesta-Benjumea Accepted for publication 23 November 2013
Correspondence to M. Martinez-Marcos: e-mail: [email protected] Mercedes Martinez-Marcos DUE MSN Professor Department of Nursing, University Aut onoma of Madrid, Spain Carmen De la Cuesta-Benjumea MSc PhD Professor Department of Health Psychology, Faculty of Health Sciences, University of Alicante, Spain
M A R T I N E Z - M A R C O S M . & D E L A C U E S T A - B E N J U M E A C . ( 2 0 1 4 ) How women caregivers deal with their own long-term illness: a qualitative study. Journal of Advanced Nursing 70(8), 1825–1836. doi: 10.1111/jan.12341
Abstract Aim. To explore the strategies used by women caregivers to deal with their own chronic health conditions. Background. Providing care has a negative impact on the physical and mental health of caregivers. When caregivers suffer chronic health problems, it increases the burden of caring, making them more vulnerable and less likely to look after their own health. Design. Qualitative study carried out between April 2010–December 2011. Method. Thirty-nine women with long-term illness who care for dependent family members took part in the study, 23 in semi-structured interviews and 16 in two focus groups. The data were analysed using the grounded theory method. Findings. Women caregivers feel that they cannot let their own chronic health problems prevent them from caring for others. Dealing with their health problems enables them to provide the time and effort their family member requires. They do this by: (1) normalizing their chronic conditions; (2) neutralizing the effects of their long-term illness; and (3) forgetting that they are chronic sufferers. Conclusions. This study analyses the strategies that family caregivers use to deal with their own chronic health problems, so that they can continue to provide family care. It shows that, to forget about their own illnesses, these women must take charge of them. Nurses need to recognize and value the strategies that caregivers use to deal with their own health problems. They also need to encourage them to use the most effective strategies, to improve their quality of life. Keywords: caregivers, long-term illness, family care, grounded theory, nursing, qualitative research
Introduction The significant increase in chronic conditions has become a top public health priority. These conditions have, in turn, led to increased mortality and disability worldwide and © 2013 John Wiley & Sons Ltd
require psychosocial interventions so that people can deal with them (World Health Organisation 2011). In Europe, chronic diseases cause 86% of deaths and affect 40% of the population over the age of 15 (Busse et al. 2010). In Spain, 513% of people over the age of 16 state that they 1825
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Why is this research or review needed? • The increase in chronic conditions have led to increased mortality and disability worldwide requiring psychosocial interventions so that people can deal with them. • Caregivers who suffer from chronic health problems are vulnerable find it more difficult to fulfil their roles and their health tends to worsen as a result. • Most of the research has focused on the impact that caring has on the health of caregivers, with little attention to female caregivers suffering from chronic conditions them-
caregiver burden, anxiety and depression are among those most studied (Pinquart & S€ orensen 2007). In addition to these problems, women caregivers suffer from other chronic ailments such as angina, arthritis and hypertension, which are directly linked to their roles as caregivers (Ward-Griffin & McKeever 2000, Arnsberger et al. 2012). The emphasis placed on studying the psychological problems resulting from caregiver burden has, in turn, limited the understanding of how caregivers look after themselves while they are caring for dependents (Furlong & Wuest 2008).
selves.
Background What are the three key findings? • Caregivers use certain strategies to deal with their chronic conditions, so that they are still able to focus their energy on caring for dependent family members. • Caregivers normalize their chronic conditions, neutralize their effects and they manage to forget about their illness so that it does not add to existing worries in their lives. • Women who care for dependent family members give greater priority to their role as caregivers than their own chronic conditions.
How should the findings be used to influence policy/ practice/research/education? • Public policies should be developed to provide the social and community support that caregivers need to cope with and self-manage their own chronic health conditions. • Nurses should recognize the efforts of caregivers to manage their chronic conditions and recommend strategies that will improve their quality of life, while discouraging those that increase their burden. • Research is needed into caregivers suffering chronic conditions, the different trajectories their illnesses can take and the implications that these may have on themselves and on the care they provide.
have a long-term illness (Ministerio de Sanidad y Polıtica Social 2009). Research studies show that it is usually women who are and will continue to be the family members who care for dependents (Lee & Gramotnev 2007, Riedel & Kraus 2011). These women find themselves in poorer health and suffer from more chronic conditions than women who are not caregivers (Donelan et al. 2001). When it comes to family care, studies highlight that people who care for a dependent family member have a poorer perception of their own quality of life, increased morbidity and even a higher rate of mortality (Pinquart & Sorensen 2003, Borg & Hallberg 2006, Schulz & Sherwood 2008). Problems relating to 1826
Research about long-term illness has explored the impact that illnesses have on the lives of people and has highlighted that they lead to biographical disruption (Bury 1982) and loss of identity in sufferers (Charmaz 1983). Different studies have shown that people suffering from chronic ailments work at managing their illness to incorporate them into their lives (Corbin & Strauss 1985, Kralik et al. 2005, H€ ornsten et al. 2011). Fitting the illness around a person’s life is a complex process that varies depending on the kind of illness and the individual circumstances of sufferers. It is the context of the illness that has the most influence on how it is incorporated into the sufferer’s daily life (Giddings et al. 2007, Whittemore & Dixon 2008). Studies suggest that people who live with long-term illness adapt and adjust to make their lives easier (Koch & Kralik 2001, Dubouloz et al. 2010). On the other hand, it has also been proved that long-term illness follow a certain pattern and that people with a chronic condition, along with their families and health professionals, have to work to keep it under check (Corbin & Stauss 1991). The experiences of women living with a long-term illness have been analysed, with a particular emphasis on their age and the stage that their illness has reached (Giddings et al. 2007, Roy & Giddings 2012). The experience of middleaged women with chronic conditions is described as a dynamic transition that moves from being extraordinary to ordinary before they finally integrate the illness into their lives (Kralik 2002). It has been shown that women have the flexibility to accommodate their illness into their lives (Macintyre et al. 1999, Adili et al. 2010). Older women, however, do not find themselves taken aback by illness. It does not represent a crisis and they accept it in a natural way (Roy & Giddings 2012). They attribute the functional limitations that may be caused by chronic conditions to age or the typical problems of becoming older (Shawler & Logsdon 2008, Shearer et al. 2009, Roy & Giddings 2012). © 2013 John Wiley & Sons Ltd
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Studies on the experiences of caregivers with chronic health problems reveal that they are more vulnerable, experience more difficulties in providing care and neglect their own needs. As a result, their own health tends to suffer (Navaie-Waliser et al. 2002, Tommis et al. 2009, Ostwald 2009). However, most of the research has focused on the impact that caring has on the health of caregivers, with a particular emphasis on psychological problems such as anxiety and depression, which have a knock-on effect on the care they provide. Research has also shown that caring for a dependent relative has positive aspects such as the satisfaction that caregivers experience when providing care, the reciprocity and mutuality between the caregiver and the care recipient and the positive meaning that caring has for the caregiver (Nolan et al. 1996, Cohen et al. 2002, Roe 2011). Caregivers’ quality of life and well-being improves when they feel rewarded for their activity, receive affection from the person they are caring for and receive social support (McMunn et al. 2009, Tolkacheva et al. 2011). Nevertheless, little attention has been paid in research studies to female caregivers suffering from chronic conditions themselves and little is known about how they go about their daily lives and what mechanisms they use to look after themselves and their families.
The study Aim To examine and describe the strategies used by women caregivers of dependents to deal with their own chronic health problems.
Design The present study follows the constructivist grounded theory approach (Charmaz 2006). This approach, as opposed to the classical grounded theory method, takes into account the context of the research itself and the position that the researchers have in it (Charmaz 2009). It considers multiple social realities and recognizes that knowledge is interpretative and constructed with the participants of the study (Charmaz 2006). Data collection and analysis run concurrently; data are explained via its interpretation and conceptualization (Charmaz 2000).
Participants Thirty-nine women with controlling their illness who care for dependent family members volunteered to take part in © 2013 John Wiley & Sons Ltd
Women caregivers and long-term illness
the research and were fully informed of all aspects of the study. The inclusion criteria were: (1) caring for a dependent relative for more than 1 year; and (2) suffering from at least one diagnosed long-term illness. The majority were wives and daughters with a basic level of education. Their ages ranged from 50–78 and the most common health problems reported were arthritis and arterial hypertension (see Table 1). Participants for the interviews were contacted with the help of healthcare professionals working in healthcare centres. A caregiver association and health centre staff helped to contact participants for the focus groups. Participants in both interviews and focus groups were purposefully sampled (Morse 1989). As the study developed, theoretical sampling took place to reach the saturation of categories (Strauss & Corbin 1998). Hence, caregivers with different family relationships, educational background and
Table 1 Participant demographic profile (n = 39). Age (years) 40–50 51–60 61–70 >70 Education None Primary Secondary University Relationship Daughter Wife Daughter-in-law Mother Niece Duration of caregiving 1–5 years 6–10 years >10 years Care-giving situation Solo Formal help 2–4 hours/day Day centre Long-term illness Hypertension Arthritis Cardiovascular disease Osteoporosis Diabetes Breast cancer COPD Asthma Chronic fatigue syndrome
1 14 12 12 10 19 8 2 21 14 1 2 1 16 17 6 12 16 11 26 19 10 9 8 3 2 2 1
COPD, Chronic obstructive pulmonary disease. 1827
M. Martinez-Marcos and C. De la Cuesta-Benjumea
long-term illness were searched and the interview guide was modified to saturate emerging categories.
Box 2 Guide for focus group
Data collection A total of 23 semi-structured interviews and two focus groups were conducted between April 2010–December 2011. The interviews lasted between 50–90 minutes and were recorded and transcribed in full. The time and place were chosen by the participants. The two focus groups were carried out after the interviews to obtain rich data and refine the categories emerging in the interviews (Morgan & Krueger 1993). These comprised six and 10 people respectively and were carried out at a day centre, lasting for between an hour-and-a-half and 2 hours. Participants who took part in the interviews and in focus groups were asked about their daily lives and the strategies that they used to manage their chronic health conditions. Interviews began with exploratory questions that became more specific as the codes and categories developed. During the focus groups, rich data were obtained about how participants kept control of their illnesses and their experience of living with their chronic condition while caring (Boxes 1 & 2). Data collection ended with the saturation of categories.
Box 1 Guide for interview I am interested in knowing about the ways in which, people like you, that is, women caregivers with a chronic health condition, manage your everyday lives. I would like to hear about your experience. To begin with, I would like to know about what is a regular day for you. Prompt questions. What do you do to care for yourself? What kind of difficulties do you face? Do you use other means to manage or treat your health problems? When do you call a health professional? What worries you most about of your health situation? How do your health problems influence the care you provide for your dependent relative? What do you do if you feel unwell due to your chronic health condition? Is there anything else you would like to add?
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Please start by telling us your name, something about the person you care for, how long you have been caring for them and the chronic health condition you suffer from. Could you tell me about the experience of living with a chronic health problem and caring for a dependent relative? Prompt questions. Could you tell us about how you care for yourself? Could you comment on the things you do to control your illness? How do you manage the symptoms of your illness? How does your health condition affect the care you provide? Is there anything else you would like to tell us?
Ethical consideration The study was approved by the hospital research ethics committee and the management board of the healthcare areas involved. To preserve anonymity, pseudonyms are used in the text below.
Data analysis The analysis was conducted as the data were collected. Three kinds of codification were carried out: open, focused and selective. Open codification revealed the codes relating to strategies used to deal with long-term illness, such as being okay and taking medication. Focused codification, on the other hand, studied the codes in different categories, such as rationalizing, keeping an eye on the illness and minimizing the illness. The categories that captured the differences in the participants’ behaviour were then studied in more detail (selective codification). Line-by-line analysis using the constant comparison method was performed. The constant comparison method involves comparing statements and incidents within and between interviews and the focus group; analysing for similarities and differences in data leading to the development of categories (Charmaz 2006). As the coding preceded insights, hunches and questions were evoked, this guided the continuing data collection. Analytical memos were drawn up throughout the study, which were used to develop and © 2013 John Wiley & Sons Ltd
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define the categories and diagrams were used to visually represent the relationships between them (Charmaz 2006). Theoretical saturation was reached after data collection and data analysis.
Women caregivers and long-term illness
Table 2 Strategies used by female caregivers to deal with longterm illness. Strategies
Strategy-related actions
Normalize chronic conditions
Feel healthy and capable Rationalize their conditions and symptoms Grow used to symptoms Pursue medical treatment Keep an eye on their illness Find ways around the disruption caused by medical conditions Focus on family care Keep busy Minimize chronic conditions
Validity and reliability/rigour This study followed Guba and Lincoln (1985) criteria of credibility, transferability, dependability and confirmability. In addition, the criteria of credibility, originality, resonance and usefulness were used, according to constructivist grounded theory (Charmaz 2006). The categories and subcategories that emerged in this study are credible, the way that the data were gathered and the detailed analysis that followed, contribute to that credibility. The use of textual references and their conceptualization, as well as the clear description given of the different stages of the research, contribute to the credibility of the results and their transferability. Throughout this study, a field journal was kept to record thoughts on theoretical elements and data analysis, as well as any ideas that arose throughout the analysis. These notes and subsequent discussions with colleagues on them have contributed to the study’s dependability and confirmability. The literature review was conducted once key categories had emerged, to guarantee their relevance. Discussion and consensus were also used to agree on the categories. Originality, resonance and usefulness (Charmaz 2006) of the present study were shown by strategies that had not previously been described. Resonance and credibility were achieved during field works as caregivers validated and developed the evolving findings. These findings will help nurses recognize caregivers’ experience in dealing with their chronic conditions while caring and contributing to their well-being.
Neutralize the physical effects of chronic conditions Forget about their chronic conditions
Normalizing their chronic conditions The women taking part in the study managed to turn their chronic conditions into a normal and natural part of their daily lives. By normalizing their conditions in this way, they integrated their illness and its treatment into their daily lives. Participants normalized their conditions by using three mechanisms: (a) defining themselves as healthy and capable beings; (b) rationalizing their condition and its symptoms; and (c) becoming used to their illness. In this way, they changed the way they perceived their illnesses. Therefore, this is fundamentally a cognitive strategy. The caregivers do not see themselves as ill women. They feel healthy as they are able to carry out their domestic chores, continue to work and provide constant care for their family member. A participant said: I am the one who does all the work in my house – I buy the food, look after my mother, I do my work – I am fine and there is nothing wrong with me. (Marıa)
Findings Women caregivers feel that they cannot let their own chronic health problems become an obstacle that stops them from carrying out their care-giving role. As a result, they develop strategies that allow them to deal with the chronic nature of their own conditions and the problems that they may cause. Three strategies were identified during data analysis: (1) normalizing chronic conditions; (2) neutralizing the symptoms of their chronic conditions; and (3) forgetting about their conditions (Table 2). By making sure that their chronic conditions do not take centre stage in their lives, caregivers are able to focus all of their energy and efforts on looking after their dependent family member. © 2013 John Wiley & Sons Ltd
During the interviews and focus groups, participants discussed what it meant to be ill. They stated that being ill means that they are no longer self-sufficient and may need to rest and to be in bed. This is a characteristic of the person they care for and perhaps accounts for their meaning of being ill. The participants rationalize their chronic conditions and its symptoms. They understand that their health problems are normal as they are common problems shared by other women in a similar position, their neighbours, their family members and perhaps even the person they are looking after. Long-term illness is, for some, inherited and therefore an integral part of their lives. As one of the participants stated: 1829
M. Martinez-Marcos and C. De la Cuesta-Benjumea Because my mother had it and so I guess it’s totally inherited, cos they also have high blood pressure. I imagine that it’s a chronic condition that is inherited, so it’s a lifetime thing, but I feel fine. (Ana)
Older participants in the study said that old age and chronic conditions go hand in hand and are a natural part of life: I have the logical problems of someone of my age: my legs hurt and when my shoulder isn’t painful, my back is. (Rosa)
When their long-term illness produce physical symptoms, these are also rationalized. When participants experience symptoms such as pain and inflammation, for example, they refer to them as days they feel better or worse. However, they justify the symptoms to themselves as common complaints due to external factors such as the weather or the cold. They wait until the bad spell passes and they get better. Finally, when the illness flares up and the sufferer has not been able to rationalize (normalize) it, she simply gets used to its physical symptoms. By doing this, she sees the symptoms as the normal physical manifestations of her illness. Even though the symptoms cause pain or suffering, she sees it as part of her life. In this way, the caregivers believe that they have no option but to live with their symptoms: I am in pain every day, but the thing is you get used to the pain. Unfortunately, you get used to it. (Sara).
Neutralizing the effects of their chronic conditions Caregivers counteract the effects of their chronic conditions and resolve the recurring problems that they face on a daily basis efficiently so that they can continue fulfilling their duties as a caregiver. They: (a) keep up with their medical treatment; (b) keep an eye on their illness; and (c) find ways to get round the disruption caused by their chronic conditions. Whereas the previous strategy discussed is cognitive in nature, this one is purely instrumental. Persevering with medical treatment is the main mechanism used to regulate and control the effects of their illness. As one participant explained: I go to the rheumatologist and have everything under control. I take a tablet every day. Yes, I take a tablet to keep it all under control. (Asunci on)
The caregivers see their treatment as their main way of controlling their illness and in focus groups the importance of adhering to the treatment reached consensus, experiences
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of health problems due to not following treatment were discussed. They know and recognize the names of prescribed medicines and how to take them. They become used to the recommended doses and their treatment becomes routine as they incorporate it into their everyday life. They are strictly committed to taking their medicines, as one participant explained. They recognize that the treatment is lifelong and must be adhered to and they make sure that they never run out of their medication. The participants are aware that their own lives which can be hectic and stressful can lead to mistakes with their own treatment, such as taking their medication twice or forgetting to take it at all. To avoid this, they prepare their medication at night time, use pillboxes and write down the names and doses of medicines on boards. They understand that forgetting to take their medication can disrupt their chronic conditions: I leave my tablets prepared at night time. At night I get them already so that I don’t forget them and I leave them on the worktop. (Dolores)
Caregivers realize that their chronic conditions have no cure, but they can, in their own words, be slowed down or brought to a standstill. However, they also understand that they can worsen and, if this should happen, their health would be compromised and they would not be able to look after their dependent family member so, they keep a close eye on their illness and this is the second mechanism they use to neutralize their illness. They find out information about their chronic conditions, so that they can make decisions that stop their illness from interfering in their lives. Discrepancies were voiced in focus groups about the way participants monitor their health, with young participants using closer surveillance mechanisms than older participants. They make sure that they attend the consultations and periodical reviews organized by healthcare professionals and undergo the diagnostic tests that are recommended. This keeps them informed about the stage their illness has reached and whether it is necessary to adjust their medication: I go to the nurse and she looks at it for me and, since recently its caused me no problems, she says to me, come every 2 months. I see that it’s okay and how I am keeping an eye on it. (Ana)
The women also keep an eye on themselves, with regular self-assessments of, for example, their blood sugar levels and blood pressure levels. And they frequently consult healthcare professionals about their chronic conditions:
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JAN: ORIGINAL RESEARCH I check my blood sugar levels with the machine and I note it down as I go. Then, when I go to the doctor, I take the book with me. He looks at it and can see how it is. (Silvia)
When chronic complaints flare up and symptoms such as dizziness, feeling generally unwell and headaches appear, the women check their figures and take measures to keep symptoms under control. They regulate medication doses, are stricter with their diet and try to relax, to neutralize the effects of their condition and correct imbalances: I have just checked my blood pressure and it was 17. I have bought myself a machine and I take it myself. I have just taken the tablet when the doctor told me to – when I am feeling dizzy…when it goes past 17 I take the tablet and it goes away. I have another kind that I put under my tongue. In a little while, I’ll check my blood pressure again and it will probably have gone down to 14 or some-
Women caregivers and long-term illness
The third mechanism that participants use to forget about their chronic conditions is by minimizing them. When talking about their illnesses, they say they have slightly high blood sugar or slightly high or low blood pressure, but they do not consider them to be important. They minimize the importance of their own health issues by comparing them with the health problems faced by the family member they care for, which are far higher on their list of priorities. Seeing their own problems as not so important – or not at all important – makes it easier to forget about them and dedicate themselves to looking after their dependent. As one participant said: I don’t place much importance on my own problems, you look around and there’s nothing wrong with you, you have people that depend on you. (Mariam)
thing. (Teresa)
Discussion Forgetting about their long-term illness Women taking part in the interviews said that they do not think about their health problems and forget about them. They have developed mechanisms to ensure that their chronic conditions do not play a lead role in their lives, as this would add to their many existing worries. Three mechanisms are used to help caregivers forget about their chronic conditions: (a) focusing their attention on family care; (b) keeping busy; and (c) minimizing their health problems. The caregivers describe how they focus their attention on the daily care of their dependent family member, resolving the unpredicted events that can arise from this and on other needs in the home. One point that arose from the focus groups was that the carers lead a life dedicated to others and that they see themselves as last on their list of priorities. Therefore, they forget about the chronic conditions that they suffer from. As one participant said: This is my life. It just revolves around another person…Of course you end up forgetting about what’s wrong with you. (Mariam)
Keeping busy is the second mechanism that allows caregivers to forget about their long-term illness. In the interviews, participants commented that they always try to keep busy with activities such as sewing, crocheting and reading. Keeping busy enables them to cope with their concerns, as they have no time to think about what might happen to them in the future, when their family member no longer needs them or their condition worsens and they can no longer deal with it. Their worries are hidden by their activities.
© 2013 John Wiley & Sons Ltd
Studies included in the research literature provide substantial evidence for the negative effects that caring for a dependent family member has on caregiver’s health. Recent research has shown that caregivers suffer from poorer health than the general population (Hirst 2004), show higher rates of morbidity, including chronic problems and take less care of their own health (Schulz & Sherwood 2008, Kim et al. 2012). Women caregivers are increasingly older and suffer from chronic health problems that may be aggravated by caregiving (Lee & Gramotnev 2007, Berg & Woods 2009). Despite this, they continue to care for dependents for many years (Pinquart & Sorensen 2004), in conditions that are more damaging to their own health. People who live with long-term illness use different strategies to adjust, adapt and integrate their illnesses into their lives (Kralik et al. 2001, Whittemore & Dixon 2008). The normalization process stands out as a particular strategy that people use to minimize the impact of their illness to carry on with typical family activities (Knafl & Deatrick 1986, Robinson 1993, Deatrick et al. 1999). Women with chronic conditions seek normality after an initial phase of agitation and aim for a situation where their illness can fit in with the rest of their lives (Kralik 2002). Caregivers, on their part, achieve normality, by organizing their own care as the needs of dependent family members change and fluctuate (Furlong & Wuest 2008). The contribution that our study makes to the research is that it shows that caregivers normalize their chronic conditions by integrating them into family care in a natural way so they do not interfere with
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the attention and care that their family member needs from them. Townsend et al. (2006) and Leach and Schoenberg (2008) have shown that people normalize their chronic health problems by using cognitive strategies that change the way they view their conditions. Our study shows that, to normalize their conditions, participants change the perceptions they have of themselves. In other words, they see themselves as healthy women who are capable of taking care of their dependent family member. Health, under their point of view, is the ability to function and be independent. They reflect the lay concepts of health, widely documented in the literature (Shaw & Schultz 2004, Shearer et al. 2009). To normalize their chronic health conditions, participating caregivers must find reasons that show that their chronic conditions are a normal part of their lives. As previous studies have shown, the ageing process and inherited chronic conditions were factors that helped them to explain and normalize their illnesses (Sanders et al. 2002, Giddings et al. 2007, Leach & Schoenberg 2008). The present study has shown that caregivers take certain steps to neutralize the effects of their chronic conditions and be able to continue fulfilling their role as a caregiver. These steps include persisting with their own medication as a means of controlling their illness, as other studies have already shown (Loeb 2006, Morris et al. 2011). Caregivers find this to be an efficient mechanism that requires minimum time and effort, while allowing them to continue providing care. Another mechanism used by caregivers to neutralize their chronic health issues is by keeping an eye on their illness, to control and manage it (Loeb 2006, Leach & Schoenberg 2008). Our study shows that female caregivers turn to healthcare services to monitor their health, they undergo diagnostic tests, they gather information about how advanced their health problem is and they accept necessary adjustments to their treatment. It is possible that, by monitoring their illness in this way, they reduce the time needed to control their health problems and can spend that time on what they see as more important tasks. Keeping an eye on their condition also makes it easier for them to manage their health and regulate their medication and diet themselves. There has been a tendency to assume that caregivers can neglect their own health to focus on their dependent family members (Forssen et al. 2005, DiGiacomo et al. 2011). However, those who take care of their chronic conditions employ strategies to manage their symptoms, to feel well, to continue their social lives and to maintain a positive identity (Townsend et al. 2006). Our study has shown that 1832
caregivers suffering from long-term illness do indeed look after themselves by neutralizing the effects of their illness, keeping an eye on it and taking medicines to control it. They manage the disruption caused by their condition in a responsible way; they worry that if their own health deteriorates, there will be no one to look after their dependant relative. At the same time, they must forget about the chronic nature of their illness, separate themselves from it and prioritize their role as a caregiver. This enables them to fulfil their moral obligation of caring for the dependant family member and the rest of the family (Pratt et al. 1987, Stein et al. 1998). Family caregivers do take care of themselves, not for their own well-being, but so that they can continue to provide care (Lilly et al. 2012). Our study reveals the precise mechanisms they employ to achieve this. Research into caregiving has focused on the burden of care and the stress coping mechanisms used by caregiver. The strategies described in this study contribute to the understanding of the way that caregivers balance their own healthcare needs with their relatives’ care-giving demands. This has not previously been described in the literature and can contribute to the development of a holistic care pathway based on caregivers’ perspectives as suggested by Noble et al. (2012). Research studies have pointed out that nurses are in a privileged position to help caregivers learn how to deal with the demands of care giving and to promote their health (Ducharme et al. 2011), to seek support and use the resources available (Honea et al. 2008, Reinhard et al. 2008) and to strengthen their effective coping strategies (Yu et al. 2013). The findings of the present study will help nurses assist caregivers to take strategic decisions on the best way to cope with their chronic health processes and to respond to their relatives’ care-giving demands, without putting their health at risk.
Limitations The limitations of this study come from presenting the women caregivers’ perspectives and from their profiles and situations. Although we aimed to find participants from a variety of socio-economic levels, most came from homes with low incomes and basic levels of education, representing family caregivers in Spain as a whole. The caregivers in this study are responsible for the permanent care of their family member and do not share this responsibility with other family members. It is plausible that the strategies used by caregivers suffering from chronic conditions will be different in other socio-economic situations and when the care © 2013 John Wiley & Sons Ltd
JAN: ORIGINAL RESEARCH
of the family member is shared. The chronic conditions suffered by the participants in our study were stable, allowing them to be independent and self-sufficient. This limits the scope of our results.
Conclusion The health of caregivers has been a focus of interest and research in the literature and studies have highlighted the positive aspects of caregiving (Hilgeman et al. 2007, Roe 2011, Shim et al. 2011). However, little attention has been paid to how caregivers address and manage their own health needs. This study analyses the strategies adopted by family caregivers to deal with their chronic health problems so that they can continue fulfilling their duties as a caregiver. It shows that to be able to forget about their illnesses, they must first deal with them. Public policies and strategies aimed at caregivers suffering from long-term illness must place the emphasis on identifying these caregivers, giving them access to health care and providing them with the support and resources that they need so that they can deal with their chronic health conditions. Nurses should value and recognize the efforts of family caregivers to manage their chronic conditions and recommend effective strategies that will improve their quality of life, while discouraging those that are not effective and are damaging to their health. In their daily dealings with caregivers, nurses should make them aware of the way they approach family care so they can make adjustments for their well-being. Healthcare professionals could bring public attention to unfair situation where caregivers with chronic conditions may find themselves, due to the lack of social support and the lack of health and social care suitable for their needs. More research is needed into family caregivers suffering long-term illness, the different trajectories their illnesses can take and the implications that these may have on themselves and on the family care they provide. In addition, future studies should include other caregiver groups, such as men or younger adults with long-term illness.
Acknowledgements We thank the caregivers who generously shared their experiences with us and the primary healthcare professionals who helped us to contact them. We are also grateful to the management of the day centre that facilitated our contact with the caregivers and provided us with a meeting point for discussion groups. Many thanks to the reviewers for their insightful comments. © 2013 John Wiley & Sons Ltd
Women caregivers and long-term illness
Funding This project was financed by the Health Research Fund of the Spanish Ministry of Health and Consumer Affairs P10/ 00558 and the Foundation for Biomedical Research at the Puerta de Hierro University Hospital in Majadahonda, Madrid.
Conflict of interest No conflict of interest has been declared by the authors.
Author contributions The authors are responsible for the idea behind this study and its structure, as well as the data analysis and the preparation of the manuscript. MM collected all the data. All authors have agreed on the final version and meet at least one of the following criteria [recommended by the ICMJE (http://www.icmje.org/ethical_1author.html)]:
• •
substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data; drafting the article or revising it critically for important intellectual content.
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