Caring and Sleep Disruption Among Women in Italy
by Emanuela Bianchera and Sara Arber
University of Surrey
Sociological Research Online 12(5)4
<http://www.socresonline.org.uk/12/5/4.html>
doi:10.5153/sro.1608
Received: 9 Jan 2007 Accepted: 5 Sep 2007 Published: 30 Sep 2007
Abstract
Drawing on qualitative research with 27 Italian women aged between 40 and 80 years, this article examines how family structure, gender role expectations and caring roles impact on women's sleep at different points in their life course. Care work shapes sleep quality and duration for the majority of these women. High levels of sleep disturbance were found among women who cared for older frail or disabled relatives. Women caring for young children and adult children living at home also experience decreased sleep quality. When informal care is unsupported, very demanding and stress provoking, sleep disturbance is greater, with women experiencing insomnia, frequent awakenings and light sleep. The article discusses the implications of inadequate welfare provision in Italy, which increases women's unpaid domestic caring work resulting in adverse effects on sleep quality and their overall well being.
Keywords: Gender, Women, Caring, Caregivers, Italy, Sleep
Introduction
1.1 Over the last twenty years, substantial research has examined informal caring, focusing on the roles and tasks undertaken by family carers and the caregiver burden, but little attention has been paid to the potential impact of caregiving on the carer’s sleep. Recently, however, sociologists studying sleep in the UK have begun to highlight how undertaking caring tasks within the family context impacts on sleep, primarily in a gender asymmetrical way. For most women caring is a life long experience, combining practical tending and domestic tasks with emotional activity. Although husbands and other family members contribute to family caregiving, women predominate as carers in the UK and even more so in Italy. This article examines qualitative data from Italy which puts into sharp relief how family structure, gender role expectations and the Italian family welfare system amplify the impact of women’s caring roles on their sleep at different points in their life course.1.2 Previous research has outlined the influence of the social context on sleep, and gender inequalities implied in the negotiation of sleep needs within the household (Hislop and Arber, 2003a, 2003b, 2006; Hislop et al. 2005; Meadows, 2005; Williams, 2002, 2005). The effects on sleep of women’s caring roles carried on through the night have been studied, but this has been limited to UK data on providing care for children and partners. Wilcox and King (1999) in the US examined sleep complaints of older women who are caregivers, but the issue of how caregiving impacts on sleep has been largely neglected within the caring literature.
1.3 The activity of care can be demanding and distressing, since it involves emotional work in addition to physical care tasks. Parker (1981) differentiates the dimensions of caring about (as an emotional response) from caring for (i.e. what is being done, tending). Further studies identify three spheres of caregiving: the physical labour, the emotional labour, and the organizational or managerial labour (James, 1992). Within caregiving, ‘emotion work’, which embraces empathy for the care receiver, anticipation of their needs and long term worries about the cared for person (Hochschild, 1983, 1990; Mason, 1996), may have the largest impact on sleep. This can explain why women report more difficult caring experiences than men, as women not only provide more hours of physical care, but are more likely to carry out the personal aspects of care and emotional labour associated with caregiving (Arber and Ginn, 1995a, 1995b).
CARE PROVISION AND THE ITALIAN WELFARE STATE
2.1 This article examines the impact of caregiving on women’s sleep in Italy. Compared to the UK, care provided in Italy is more intense, first because of Italy’s family oriented culture, and second because of gaps in the Italian welfare system, resulting in minimal state support for care delivery and an informal familiarized care model (Naldini, 2003; Saraceno, 2003, 2005; Trifiletti, 1999). Exchanges of family caregiving and interaction between adults and their older parents occur with greater frequency in Italy than in the northern countries (Tomassini et. al, 2004), and strong intergenerational ties are manifest through high levels of co-residence and spatial proximity (Glaser and Tomassini, 2000). Grandparents often provide low cost childcare while mothers work, and midlife women are particularly likely to provide assistance in cases of poor health and disability of their parents. This intergenerational care provision compensates for difficulties in obtaining state-provided childcare services and the lack of domiciliary and residential care for frail elderly people in Italy (Tomassini et. al., 2003).2.2 Although since the Second World War in Italy there has been a substantial change from the extended to the nuclear family system (Balbo, 2000; Bimbi, 1999; Saraceno, 1984), co-residence between adult children and older parents is still widespread (Gierveld and van Tilburg, 2004). Where adult children are co-resident, they tend to provide greater assistance to their parents financially and with domestic tasks, as well as frequently undertaking personal care (Glaser, 1997).
2.3 In Mediterranean cultures, adult children tend to move from their family of origin at an older age, prolonging cohabitation with their parents. The percentage of young people (age 20-29) living in the parental home is 75% in Italy and Spain, compared to 31% in the UK and The Netherlands (Becker et al., 2004). In Italy, this relates to economic difficulties that young people face in becoming independent, because of job insecurity, and difficulty in obtaining permanent, well-paid positions. Moreover there is strong cultural pressure for adult children to remain living with their parents until marriage or steady cohabitation. Living alone or with friends is uncommon and when it occurs is a source of anxiety and concern for many parents, encouraging adult children to remain living at home (Palomba, 2001; Becker et al., 2004).
2.4 Historically Italian family networks tend to be less dispersed than in northern European countries (Hollinger and Haller, 1990). Living in intergenerational proximity is normative within the Italian and Mediterranean culture. Mediterranean countries have been characterized by a strong family culture that regards the care of kin in need, whether a child, spouse or frail older person, as a private matter, and female relatives have traditionally provided the majority of the assistance required (Gori, 2000). For this reason the Mediterranean welfare state has often been characterised as a ‘familialistic’ or a ‘kinship solidarity’ model (Naldini, 2003; Saraceno 2005; Trifiletti, 1999). This ‘familiarized’ welfare model is based on either an implicit or explicit delegation of responsibility for caring to family and kinship support networks, which frequently substitute for government provision (DaRoit and Sabatinelli, 2005). In this context, care needs are primarily fulfilled through intergenerational solidarity between families and mainly carried out by the unpaid work of women (Naldini, 2003; Saraceno, 1984, 2003, 2005; DaRoit, 2007). These care obligations lead to low rates of women’s participation in the labour market: women’s employment rate in Italy in 2001 was 42% compared with a European Union average of 55% (Marenzi and Pagani, 2004).
2.5 Women’s employment and the Italian work-life balance is characterized by limited state supported childcare, low economic activity rates of mothers, and a substantial role played by cross-generational solidarity (Ponzellini, 2006). In spite of the ideological emphasis on the family in Italy, there is a general lack of state policies to support the family (Bimbi, 1999). Aassve et al. (2005) argue that the impact of child rearing on women’s well being after child birth in Mediterranean countries is greater than in the UK and in social democratic countries in Northern Europe. The low coverage of childcare services, and their high cost and limited opening hours mean that existing public services do not provide much assistance for combining household work with paid employment in Italy (Marenzi and Pagani, 2004). There is also a lack of state policies relating to maternity benefits and allowances for parents or family-friendly working hours. A long break after childbirth is frequent, particularly among women from lower social classes or in less secure jobs (Saurel-Cubizollones et al., 1999) primarily because of the difficulty of combining childcare with paid work. Only 2% of women who were working full-time before the birth of their child were employed part-time two years after the birth, compared with 49% in Sweden (Gutierrez-Domenech, 2003).
2.6 With regard to care for older people, state provided residential care is inadequate, and Italy has the lowest domiciliary care provision in Europe. OECD reported that in 1996 only 1% of people aged 65 and over in Italy were home help recipients, compared to 5.5% in England, 6.5% in Germany and 16.6% in Sweden (Gori, 2000). This is despite Italy having the highest proportion of older people among European countries (World Health Organization, 2004). In this situation, care responsibilities for elderly relatives are mainly handled by family and kin networks (Saraceno, 2005).
2.7 The lack of state provided care for older people in Italy, has led to a growth in privately employed care assistants from other countries. A ‘care drain’ (Bettio et al., 2004) has drawn migrant female workers, popularly called ‘badanti’, literally ‘minders’, to provide co-resident care for disabled older relatives (DaRoit, 2007). ‘Badante’ are mainly middle aged married women, sometimes highly qualified but in most cases with little formal training, who temporarily work abroad to save money to send back home. ‘Badanti’ mainly come from eastern European countries - the former Soviet Union, Albania, Poland; or from non-EU countries, such as the Philippines, South America and North Africa. They are hired through catholic circles, charity associations or the grey market, earning approximately 900euros per month in northern Italy and 600euros in the south. Families who cannot afford to provide a regular employment contract, may hire private carers without an employment contract. The increased private employment of ‘badanti’ lead to issues concerning illegal labour, unregulated immigration, and their policy consequences (Daly and Lewis, 2000; DaRoit, 2007; Zanatta, 2004; Rothgang and Comas-Herrera, 2003).
2.8 The mixed care solution developed in Italy and other Mediterranean countries has created a complex division of labour. Family carers may have to coordinate personal care work by immigrant ‘minders’, as well as private health providers (for medical treatment), charity and third party support (such as for taxi driving services, and from social associations) (Simoni and Trafiletti, 2004). However, the provision of home-based elderly care through this complex web of care provision does not change the gendered division of labour between women and men. Although all family members may contribute to the assistance of frail relatives in Italy, with some men involved in elderly spouse care, those providing care are still predominantly women.
2.9 Paoletti’s Italian research (1999, 2002), based on conversational analysis, shows how linguistic categories build up and associate caregiving for elderly relatives with women, and how caring is constructed conversationally primarily as a female duty. Gender categories in Italy have strong moral connotations. For instance, where a parent needs care, ‘being a daughter’ is sufficient reason to become a carer. Caring tasks are recognized as gender-specific practices, therefore failing to carry out these duties is sanctionable for a woman, but this is not the case for a man (Paoletti, 1999, 2002).
2.10 In summary, there is weak state support in Italy for child and elderly care, with Italy characterised as a familiarized welfare state. Given the existing gendered division of labour, women play a significant role in caregiving throughout their life course. Hitherto there has been little attention to how Italian women’s intensive role in caregiving impacts on their quality of sleep.
METHODS
3.1 The aim of this article is to examine how Italian women’s sleep is affected by caregiving at different stages of their life using a qualitative approach. In-depth tape-recorded interviews, together with audio or written sleep diaries, were conducted with 27 Italian women aged between 40 and 80 years, including married, single, divorced and widowed women.3.2 Women who lived within approximately 30 miles of a medium sized town in Northern Italy were recruited through local social, educational and community organisations and via snowball sampling. They were intentionally recruited to represent varied social and economic characteristics in order to investigate women’s sleep in different family contexts. Pilot work was conducted before the study to test the techniques previously used in sleep research in the UK (Hislop and Arber, 2003a, 2003b; Hislop et. al., 2005), to refine the interview schedule and test the audio-sleep diary techniques in a different cultural context. The study was approved by the University of Surrey Ethics Committee.
3.3 Qualitative interviews lasting approximately one hour were recorded with each participant’s permission. The aim of the open ended questions was to capture factors influencing women’s sleep, particularly the impact of the environment, social context, family structure, gender roles and participation in paid work. The interview guide was not specifically designed to examine how caregiving influenced sleep, but caring emerged as a dominant theme throughout the interviews. Interview transcription was in Italian, with quotations used in this article subsequently translated into English. Pseudonyms are used to protect the anonymity of respondents, with their age indicated after quotations. The analysis utilized the computer assisted qualitative data analysis software package QSR NVivo 2.0.
3.4 The first section of the paper examines the impact of caregiving responsibilities on women’s sleep at different stages of their life course, focusing on how different forms of care determine, shape and fragment their sleep. In the second section, we propose a typology to highlight how different aspects of caregiving (irrespective of life course stage) impact on sleep.
CARING THROUGH THE LIFE COURSE
‘After the kitchen the bedroom is the room I feel more mine. In sleep I find a space on my own’ (Maria, 63)4.1 The data illustrate how sleep quality and duration are connected with the labour of care for the majority of midlife and older Italian women. Being by its nature a labour of love, caregiving is generally regarded by the respondents as a rewarding activity, especially when it represents a reciprocal exchange of help and affection in a balanced and natural way. On the other hand, when caregiving becomes excessively unilateral, unsupported and prolonged, caring can turn into an overwhelming, stressful commitment, which restrains the self, and impacts deeply on the carer’s sleep.
4.2 Most of the women interviewed reported how their sleep had changed profoundly when they started undertaking caring roles.
INT: How does sleep change when the family grows?Through care provision, sleep loses the characteristics of a self-owned, personal space for relaxation, and becomes a shared dimension where the needs of the care receiver (both physical and emotional) become dominant.
Maria: It changes a lot because before sleep used to be like a closed world, including just yourself. Later, as your family grows, it becomes something different: even if you wanted to close down, there’s nothing you can do, there’s a window open onto the lives of the others.…
Sleep does not give me anymore that relaxation, that total closure of the past years. Now it’s a very different thing, it’s more physical. I don’t feel it’s my own thing anymore, to say ‘It’s my own world’. To me it has always been important, because it was a world just for myself, with my own thoughts… Now you think about the others, it’s not your space anymore. (Maria, 63)
Caring for children
‘The child is my great divide. There is a ‘before the child’ and an ‘after the child’. This is, let’s say, the framework.’ (Francesca, 41)
4.3 The first and most common form of caregiving among women is childcare. Women report that childcare is more natural and gratifying than other types of care, such as care for elderly relatives, nevertheless it affects sleep. Children are a significant source of sleep disruption for mothers - during pregnancy, breast-feeding and the early years, because of their child’s frequent night awakenings and illnesses. The birth of a child generally acts as a borderline separating two distinctive sleeping lives, as for Francesca:
When a child is born your sleep is overturned, just in that moment you understand what sleep was and it starts becoming the focus of your entire existence. I mean I am obsessed by sleep, by the need to recover the sleep I have lost, because… the fact of not resting well causes the heaviest days.…
I have noticed that when I don’t rest well, also emotionally I am more fragile, as well as physically. And so when your sleep is very fragmented, because of a child, the problem of sleep assumes a significance out of all proportion, which it never had before. Something that used to be marginal ‘OK, I go to bed, I sleep and goodnight’, becomes vital. Then you understand that those hours are vital for the body and the mind, to be able to cope with emotional stress. (Francesca, 41)
4.4 Sleep disruption generally continues for the first few years of a child’s life, during which some women have very disrupted sleep for long periods. This experience is worse for working mothers, especially as women in Italy usually have difficulty obtaining part-time jobs, so cannot recover sleep during the day.
Rita: I had a daughter who did not sleep at night, and for 6 years I haven’t slept at night. In the meantime the second was born, when the girl was 5, she slept even less, and I had another 2 years without sleeping.
INT: How long did you sleep per night?
Rita: A couple of hours…when I was lucky 4, but never longer. And I went to work in the morning. It was hard. (Rita, 56)
4.5 The complex Italian work-life balance (because of limited availability of part-time jobs, and lack of access to nurseries) exerts an extra pressure on Italian women with children, who often have to turn to relatives for help, reinforcing the circle of care exchanges and labour within family networks.
Caring for grandchildren
‘(During the afternoon nap) I lay by one child, while I check the other. Actually, when I look after the grandchildren, I can’t sleep’ (Letizia, 66)
4.6 Many women reported asking grandparents or other relatives to care for their children while they worked. Italian women now use paid forms of childcare more than in the past (private nurseries, paid babysitters), however, this solution is still relatively unusual, because of lack of service provision, high costs and difficulties obtaining quality childcare from outside the family. This also accounts for many women choosing to live close to their family of origin.
4.7 Adele, who worked shifts as a full-time obstetrician, managed to combine childcare with her special sleep needs by living on the first floor of her parent’s house:
When I married and had a family, I had already decided I would stay in the house of my parents, because having seen the experiences of my colleagues, who had a family with children, all those were very problematic, from an organizational point of view. You know, with children, you have to go to work, the child is ill, the baby sitter doesn’t come… So I made this choice, obviously my husband agreed, living like this, at least I am tranquil from a family point of view, you know? …
Obviously, when children are little and start crying, you know, you are the one who wakes up, before your mother. The commitment was always there, but it was shared, with my parents. (Adele, 58)
4.8 For older women, looking after grandchildren can be a positive experience, reducing loneliness, and providing a way of feeling active and useful. On the other hand, it can be an additional commitment which also impacts on their sleep.
INT: Do you work?
Rita: I am retired for several years. I work in the sense that I look after the child and do the babysitting. I am a full-time grandmother.
INT: How long do you look after her, all day?
Rita: No, my daughter is a nurse, so she works shifts. I look after her when the father is not at home, so some mornings, some afternoons. It is not a fixed daily thing.
INT: Baby sitting has an influence on the way you sleep?
Rita: I have to wake up early in the morning. What I like very much is waking up, preparing breakfast and then going to bed again, reading a bit. When I have the child, I can’t do this…
INT: And so your afternoon nap?
Rita: No, I would say it is rare…
(Rita, 56)
4.9 For women who look after grandchildren, their sleep rhythms can be restricted both because of the need to wake up earlier (to get children ready for school etc.) and the inability to have naps (because of picking grandchildren up from school and keeping them entertained). Some women saw caring for grandchildren as demanding and stressful, especially in a period of life when their strength had decreased and chronic illnesses had started to develop.
Caring about adult children
‘When they started going out, I said to them: ‘You made me lose the pleasure of sleeping’.’ (Loredana, 80)
4.10 Italian culture and economic problems associated with the cost of living, mean that adult children remain living at home until a late age. For women therefore the caring period is extended and anxieties persist as long as children are living under the same roof. No matter their age, as long as a child lives in the household, most of the mothers interviewed worried when they were out at night. For these women, sleep was not deep but alert:
When they are little, children influence your sleep because they keep you awake in the night, like (daughter), she was such a thing… she used to go around all night, she didn’t sleep. Now that they are grown up, I wait until they come home, consequently I can’t sleep until I hear the noise of the car coming in.…
On Saturday, they rarely come home before 3. So I go to bed at 1.30, and can’t sleep, until I hear the cars. When I don’t hear them, because maybe I am half asleep, I suddenly get up to check in the garage, if the cars are there - maybe around 4.30, if I did not hear them coming back. (Chiara, 56 - children 28 and 30)
4.11 Techniques to minimize anxiety and check if adult children were home varied. They included checking if the car was in the garage, checking the child’s bed, calling them on their mobile phone, and waiting up until they came home. All the women with adult children reported disturbed sleep for these reasons.
Caring in extended families
‘(Following marriage) once it was the custom to move into the house with the whole family. You were the last to arrive, your habits did not count for anything… it had a dramatic impact.’ (Lorena, 65)
4.12 The Italian family structure implies substantial caring responsibilities, especially for women in extended family contexts, where co-residence becomes a significant factor affecting sleep. Although families are increasingly changing from an extended to a nuclear model, the majority of interviewed women over 60, had lived for much of their life as part of a traditional multiple family, where childcare and eldercare was undertaken and shared entirely within the household.
4.13 Even though many respondents had positive experiences of living within this extended family care system, women undertaking household management, child rearing and more demanding elderly assistance, experienced problems that resulted in sleep disruption:
I worked very little outside the home, but I worked at home. Demanding families, big families. I used to have mother-in-law, father-in-law, brother-in-law, who later moved out with his family....
When children are little, sleep is very limited. You sleep if they sleep, you sleep if they are well. Then during the day you have little time for yourself.... Then the years have passed, my father died, my father-in-law got ill. And yet we still didn’t sleep, because he used to wake us up, he escaped, shouted.… There has been the death of (brother), the illness of my husband, altogether. You sleep, because you have to make up your mind and realize that you also have to think about yourself, otherwise you won’t be able to struggle with others’ suffering. But sleep changes, you sleep less. You wake up all of a sudden, because maybe you know that they don’t feel well and they need you. At the very moment they call, you are already there… you don’t sleep deeply. (Luisa, 67)
4.14 This account by Luisa, for whom care had been an ongoing commitment throughout her life, illustrates how the experience of living in an extended multiple family had a major effect on her sleep.
Caring for elderly family members
‘It was a restless sleep, with a sense of responsibility that went beyond my strength and my capabilities. She (my mother) woke me up every hour to tell me - she was paralyzed on the left side - ‘Turn me over on this or on that side’. She got me mad.’ (Donata, 59)
4.15 Providing assistance to frail elderly family members was usually seen by women as having a substantial influence on their sleep and wellbeing. Elderly care may be characterised as intrinsically different from childcare, with varying effects on women’s sleep.
I have tended at night my mother, who slept with me, as I remember. And then I assisted an elderly relative with a terminal illness for one month, my father in law who was dying... I can’t really tell you, I can just perceive that if I sleep with a newborn child there is a certain effect, different from an elderly person… I think that if you sleep close to a newborn you feel… when I was tending my daughter, surely sleep quality was different, more pure… while sleeping close to an elderly relative can create anguish, maybe because you acknowledge that they are doing a journey which anticipates yours. (Donata, 59)
4.16 Moreover, women connected a child’s cry in the night to a natural, easily manageable need, whereas a call from an ill person was seen as more alarming and related to an immediate serious need.
Another fact that helps (caring) very much for the child at night, is that even if you know he needs you, you can stay calmer, you know that it’s a different thing than for example, when my mother-in-law rings the bell. That frightens me more. You connect it at once with a grave necessity… Because hearing a bell in the night, it’s a thing you can’t imagine… Whereas, the child, you keep an ear open, he can cry a bit.… (Maria, 63)
4.17 Depending on the type of illness, extent of required support and relationship with the ill person, caring for an elderly relative can be experienced as worthwhile or stressful. Where the care is shared (with sisters, brothers, or other relatives) and the caregiving is temporary and not overpowering, women reported handling caring more positively. However for some women the caregiving demands were overwhelming and expectations overcame the carer, with their physical and psychological health affected. The most adverse consequences for sleep occurred during and after the following types of care provision: assistance during terminal illnesses; assistance during unpredictable illnesses; and assistance during long term illnesses, including night assistance. Each will be briefly discussed.
4.18 Assistance during terminal illness, which is also connected to the distress of bereavement, had long term effects on sleep, which often continued long after the death of their relative, and mainly resulted in awakenings, light sleep and insomnia, sometimes treated by sleeping medication. In cases of dementia or the terminal phase of illnesses, sleep disruption often became frequent, unexpected and more upsetting. Sleep quality, while assisting such disabled relatives, changed, with sleep not as deep or restoring, but alert. The awareness that the caregiver can be called or needed at any moment seriously disrupted their sleep.
I remember that when my father-in-law fell sick for the last time, my brother-in-law had come from Sicily to give a hand. It was the last weeks… It was months we did not sleep, because we had to wake up 3 times a night for the injections of morphine. I slept waiting for him to call for the injections (morphine) in the night. (Maria, 63)
4.19 Unpredictable illnesses were also very disruptive for the caregivers’ sleep, resulting in sudden awakenings during the night, which engendered a constant state of alertness. When illnesses are less demanding and more predictable, sleep could be kept under control through coordination of the assistance required with sleep needs. Luisa managed to predict interruptions, by delaying her bedtime and setting the alarm clock once a night:
When you have ill people at home they overtake you. Maybe you wake up in the night and go to see how they are, if they need anything. You go to bed late, because you say ‘so until that time I know they are fine’. Maybe you set the alarm clock once a night, for fear of… all those things… and obviously sleep is not peaceful. But if you physically feel well you can sleep some hours, I mean enough, knowing the illnesses they have. If they have illnesses, as I said, so drastic then maybe you are not able to sleep. But I have had my mother-in-law infirm for 5 years, then I did not go to bed early, because I knew I either had to give her a drink, raise her, or change her clothes, all those kind of things… you can no longer sleep 7 hours a night. Maybe you put the alarm clock on at 3, 4, you go to see her, and then go to bed… (Luisa, 67)
4.20 Long term illnesses, which include night-time assistance, have major impacts on carers’ sleep. However, if care is short-term there were fewer consequences. Most of the women reported having had temporary all-night caregiving experiences, characterised as ‘nights’ and ‘wakes’. Doing a ‘wake’, or a ‘night’, meant watching over an ill person throughout the night. This especially occurs during terminal phases of an illness, often at the hospital, where the patient is not physically able to call for help, and continually watched in case of need:
When I had my father at the hospital I used to stay with him. I have done several nights at the hospital. I slept on the armchair, to the extent that you can sleep in a hospital: partly because I was anxious, partly because at the hospital there were the nurses, calling etc. So, it is a sleep where you don’t really sleep. (Ida, 63, interview)
4.21 Irrespective of types of care provision, unsupported assistance, where a woman had minimal help from within or outside the family, had greater adverse effects on women’s sleep. Thus, long-term sleep disruption was more likely when women were unsupported or received minimal help from others. As discussed earlier, the family solidarity model compensates for the lack of welfare provision in Italy with the vast majority of caring work undertaken from within the household. For women, stress and disruption are less when caring tasks are shared with relatives, mainly sisters, and in these cases women report more positive experiences:
INT: You never obtained external help, you always did all the care?
Adele: We always did it all. We’ve had dad ill, 5 years, mum, an uncle downstairs, we’ve had a busy life, both from a work and a family point of view.
INT: Have you got brothers and sisters that help you with this?
Adele: There was my sister downstairs, when I wasn’t there, I was at work, she came upstairs (to help).
INT: Does she live here downstairs as well?
Adele: Yes, with her family. So she came up. Therefore at work I could be calm because my sister was taking care of it. And then at that time my children were already grown up. (Adele, 58)
4.22 When women had caregiving support from family members, both practical and emotional, this gave them personal space, which could be dedicated to work or rest, and the overall caring burden was better managed, resulting in less sleep disruption.
4.23 On other occasions, family support networks are not available or insufficient to cope with severe illnesses that require night time assistance. In these cases the lack of domiciliary welfare support in Italy becomes more evident and emerges in the accounts of women as compounding caring responsibilities at night and sleep deprivation.
“My grandmother, the grandmother I had at home.... she was ill for six months with cancer, she was terminally ill... Besides a grandmother, I was very much attached to her because I had lived with her for thirty years: basically all the years of my life before marrying. And when this thing happened, it was really very, very grave because of the lack of structures to support us with this type of illness, because her being terminally ill, there did not exist any structures to support this kind of problem. Therefore, we found ourselves having to take her home (from hospital), and spend the nights with her… in shifts, my mother, me, my brother when he could, because he had an extremely demanding job. Going to sleep at 4 in the morning, when she fell asleep, and waking up after an hour, one hour and a half, was a routine. (Lorenza, 54)
4.24 This quote from Lorenza is just one among many that illustrate the situation of many Italian families where the burden of caring is completely left to the family with a resulting severe impact on sleep and wellbeing for long periods of time.
Use of formal care services for older people
4.25 Over recent years, formal services are beginning to be used in Italy to assist in caring for frail elderly relatives, but their use varies according to women’s socio-economic circumstances. Women who were housewives could not afford private external help or underwent strong social pressure to care at home. Among social classes with adequate financial resources, alternative solutions may be sought when care is no longer bearable or cannot be shared. One of the most widespread solutions is hiring a private carer, ‘badante’. This option is preferred because it allows relatives to remain living at home with provision of assistance; whereas care homes are seen as too expensive or inadequate. Also, it allows the carer to sleep at night.
INT: Do you happen to sleep in your mother’s place? (mother lives nearby)
Chiara: Well, rarely. It used to happen… I mean in the past years, now seldom, since I have a badante. Consequently, just if she (mother) is not well or very bad, and I don’t feel sure, I stay there with the lady (badante).
INT: And the carer sleeps there?
Chiara: Yes, she sleeps there.
INT: Because she (mother) needs assistance all the time?
Chiara: Oh yes, you can’t leave her ten minutes alone.
INT: And then you would have stayed there every night…
Chiara: Exactly… the carer sleeps upstairs, mum sleeps down, they have a bell, and if she needs something she calls. Like this, she (carer) is not disturbed that much. Instead, as I am her daughter, I have to sleep with her (in the same room), I can’t go and sleep upstairs, so I am there with her… Because when she (mother) was here, I never slept at night.
INT: What did she do?
Chiara: She makes noise, I mean, poor woman…
INT: Because she can’t sleep?
Chiara: Well no, she sleeps, she says she does not, it’s not true. She sleeps and snores. But it’s that agitated sleep, I mean. For example, the first time she came here, three years ago, she stayed more than a month, it was a nightmare. She seemed a volcano, all the night calling, moving, saying she was seeing animals, all that sort of thing. (Chiara, 56)
4.26 Another possible alternative is for frail elderly relatives to move into a care home. However, since caring for infirm elderly relatives within the family is expected in Italy, delegating this to external services, is usually seen as abandonment, both by the older person and by social networks around the family.
TYPOLOGY OF CARING IN RELATION TO SLEEP CONSEQUENCES
5.1 This section proposes a typology of caregiving, as a way of integrating the preceding discussion of how caring across the life course impacts on women’s sleep. This highlights that sleep is not only disrupted by having to deal with the night-time physical needs of the care receiver, but also by the emotional labour of worries, thoughts and anxieties connected with their role as a carer.Direct care needs
5.2 When tending children and elderly relatives, sleep may be disturbed by undertaking physical tasks related to providing concrete assistance during the night, such as feeding a baby, giving medicines, changing clothes, helping to turn a severely ill relative over in bed, or giving a drink.
The grandpa (father-in-law)… we had such a hard time with the grandpa, poor man, we woke up 3–4 times a night, we needed to wash him, change him, throwing clothes and sheets out… then going back to bed. Then maybe again at 4.00am, and I heard him calling, or you had to go down again, and change him another time. (Luisa, 67)
5.3 The impact on sleep of providing direct care depends, first, on the frequency of the awakenings caused by the needs of the care-receiver, and second, on the carer’s ability to fall asleep again rapidly. These two women, for instance, react in opposite ways to sleep disruption from young children in terms of their ability to get back to sleep:
Also because it happens this… I wake up, go to them (children) and then it takes a while to fall asleep again. The worst is this, see? …it takes me an hour… I wake up completely. Because obviously you wake up and you have to be active, not in a deep coma, so I take a long time to calm down again. (Veronica, 46)
Loredana: Yes, I took the 3 months of maternity leave and then I went back immediately to work. And then… in the night you could not sleep well, because he (son) used to wake up many times to feed. Every hour, hour and a half he woke up.
INT: For how long?
Loredana: Until a year and a half he woke like that. But I fell asleep immediately after breast feeding and tried to recuperate. The amount of sleep was right, but there was not the continuity. (Loredana, 45)
5.4 Another key issue is the intensity and the nature of any calls during the night. For instance being woken by a call or a bell rung by a frail elderly relative was seen as more abrupt and distressing than responding to a call from a child, because of the different implications that these calls imply.
Anticipation of having to undertake care tasks
5.5 When undertaking care tasks during the night, sleep can be disrupted not only by responding to the need itself, but also by the anticipation of having to provide care. This results in developing the habit of light sleep, which takes the place of restorative deep sleep. For instance, anticipating calls from frail relatives with debilitating illnesses tends to keep women in a state of alertness. Women reported that while caring for a disabled relative, their sleep was not deep or restoring, but alert. The awareness that one can be called on or needed at any moment, is not conducive to sleep:
I remember when there was my father-in-law or when she (mother-in-law) just got home from the hospital, it (sleep) changes, yes, because you sleep, but you sleep always with that anguish… I mean you say ‘I rest’, you never say ‘I sleep’. You are aware that you are resting but there is always that anxiety that you say ‘now I have to wake up’. And that really takes away your sleep… you don’t have any tranquillity. You say ‘I rest, because I am tired. And I wait’. You are aware you are waiting, and in the meanwhile, you rest. (Maria, 63)
5.6 Many women with children got into the habit of light sleep, ‘tuning into their cry’. In addition, alertness during the night may continue when their teenage and adult children go out at night.
The children have changed my sleep considerably, especially when they were little, because you kind of ‘tune in’… if they just do something, speak or cry, my two sons, I hear it. It’s like a frequency - you are tuned in on their cry, on their call. I think it’s something related to maternal instinct, because it has never happened before. If one of the two has a problem, it is always me that goes, (husband) does not hear them. (Veronica, 46)
5.7 For women caring for young children or frail older relatives, sleep may be disrupted because they anticipate having to deal with expected care needs, whether it is to feed a crying infant or change the soiled bed of a frail elderly relative, resulting in ‘lighter’ and more ‘alert’ sleep.
Worries related to caregiving
5.8 Women’s gender roles mean that they not only ‘care for’ but they ‘care about’ their family members (Finch and Groves, 1983). This emotional labour of ‘caring about’ results in women having concerns and worries about the well-being or welfare of their children (irrespective of their age), partner and parents, which often disturb their sleep at night. These worries are connected to the emotional labour of being empathetic about the needs of other family members (Mason, 1996). They may be associated with the immediate well-being of a family member, such as a teenager out driving late at night, the thought of a child falling out of bed, or whether their elderly parent is in pain, all of which can worry a woman during the night disrupting her sleep.
5.9 In addition to these immediate worries about the well-being of family members, a woman’s sleep may be disturbed by longer term worries linked to her caring roles, for example, worries about whether her frail mother will have to enter a care home, an adult child’s impending divorce and the possible effects on grandchildren, or her child’s poor school performance. These thoughts about the well-being of their family members may intervene during the night, and interfere with obtaining restorative sleep.
Long term consequences: the legacy of caregiving on sleep
5.10 For many women, the after effects of caregiving were insomnia, early waking, delay in sleep timing, sleep disruption and consumption of sleep medications, as well as adverse consequences for their physical and psychological health (weariness, depression).
5.11 Women reported that the habit of light sleep, listening out, and sudden awakenings in the night endured for a long period of time, and altered their sleep patterns beyond the caring period:
She (mother-in-law) used to sleep downstairs… She suffered greatly, especially the last year, when she was bed-ridden. Then I used to wake up many times a night, to see if she was fine. And it affects you to the point that also after, when the person is gone, you keep on waking, telling yourself ‘My god, I forgot to check her, I forgot to give her that medicine’. (Silvana, 69)
I will tell you that this thing has lasted for about one year, after the death of my grandmother - I had a hard time falling asleep, in sleeping, in regaining a regular rhythm of sleep. I had really a hard time. Because I could still hear her - I heard her voice that called me, because she was in need, or it seemed to me that my mum would call me, because she needed help with her… all these sorts of things. It took me one year to regain the regular rhythms of sleep. (Lorenza, 54)
5.12 Some women were haunted by distressing images of caring, especially during terminal phases, when their relative was undignified and vulnerable:
Virna: When there are events of this kind, that hit you on a… personal level, they directly disturb your sleep. Sleep is the first thing that is affected.… This autumn my father passed away, a short but serious illness, and this problem (insomnia) has presented again…
INT: Did you nurse…
Virna: Yes, a bit. And that has affected me, because it’s images that stay in your mind, and reappear… It’s all after, the worst is after. Then when he’s passed, I have these images in my mind, the last… the strongest ones. And sometimes, with tiredness the mood goes down. But I know from many people, even from my husband, who has seen a lot of these cases (husband is a GP), that it takes a long time before you get over… so in the following months you still have… now I am starting sleeping some more hours… (Virna, 46)
5.13 A sense of guilt about not having done enough for the person being cared for is sometimes part of the legacy of caregiving. This single woman, who routinely undertook caring for ill family members, describes her suffering in seeing her aunt not properly cared for at home and then put into a ‘ricovero’ (care home).
Daniela: Lately it happened (insomnia) to me, because in March my aunt died, the aunt that brought us up... There it’s been a thing… I won’t easily forget…
INT: Long?
Daniela: No, short very short. I have been disturbed not for the thing itself, because she was 92, poor woman, I wished she could live forever but… it’s because… You know, we are a complex family…. She fell and broke her thigh-bone. She was living with the brother of the woman you saw here before. The wife put her in a ‘ricovero’, or maybe ‘they’ put her in a ‘ricovero’, I don’t know. I did not accept this. That’s what disturbed me. Not the fact of caring, because we were there every day, not for having to go there… I would go 10 years, if this could help her live. And this feeling will never pass, because she’s a person that did not deserve it, to be treated like that….
She (my aunt) took it very badly, besides, she did not deserve it, because if there was a good person, this is known in all the village, it was her. This has disturbed me a lot, and it won’t pass easily…. That’s what I think, think about in the night, when I don’t sleep… what disturbs me… these things here… (Daniela, 53)
5.14 Social expectations play a key role in attitudes towards who should provide care for very infirm older people. As discussed earlier, caring for relatives within the family is generally expected in Italy, and therefore if older people are ‘put into’ a care home, this is usually seen as abandonment by friends and family members. It is significant that care homes in the above quote and in common language are referred to with the pejorative term ‘ricovero’, which differs from ‘casa di riposo’ (rest home) and is probably closer to ‘infirmary’.
5.15 Caregiving literature has focused extensively on burdens related to the physical labour of providing care, and the emotional labour associated with caregiving, but has largely neglected the longer term consequences of caregiving, which may impact on the carer’s sleep and psychological well-being for a substantial period after the period of caring has ceased.
CONCLUSIONS
6.1 This article, based on qualitative interviews with women aged over 40 in northern Italy, has illustrated how sleep disruption relates to women’s family structure and caring roles. It discusses the relationship between inadequate welfare provision in Italy, women’s heavy engagement in unpaid caring work and adverse effects on their sleep. Limited state support services for childcare and frail elderly people in Italy result in extra domestic and caring work for women. In particular, where women lack family support networks of other women to share and provide care for disabled relatives and children, there are severe adverse consequences for their sleep.6.2 The nature of gender role expectations and family welfare responsibilities impact on women’s sleep and well-being. Sleep is shown to be affected by family care worries. It reflects pressures at difficult stages of the life course and varies in concert with the extent of stressful work and family commitments, as well as painful events, such as bereavement. Care of elderly infirm or disabled relatives seems to have particularly disruptive influences on women’s sleep, especially when associated with long term illnesses. Psychological distress can surface in conjunction with or as a consequence of sleep loss, which can be temporary or long lasting, limited or severe.
6.3 For most midlife and older Italian women caring has been a life long experience, combining practical tending and domestic tasks with emotional labour, which continues at night and affects sleep quality, continuity and duration. Sleep disruption results from four different aspects of caregiving: first, providing direct care to attend to the night-time physical needs of the care receiver; second, anticipation of physical care needs, which may keep the care-giver awake or result in ‘light’ sleep, so that women remain alert and do not obtain deep restorative sleep; third, sleep is disrupted by emotional labour in the form of worries, thoughts and anxieties directly linked to the night-time needs of the care receiver, as well as more generalised worries or anxieties about the well-being of family members; and fourth, the legacy of caregiving which may continue to disrupt sleep for long periods after the caring has ended, with some women haunted by painful images of caregiving and the suffering of their relatives, or by feelings of guilt about not having provided care appropriately.
6.4 By analysing the case of Italy, this article has shown how the substantial societal pressure to provide intensive care for frail older relatives can adversely affect women’s sleep, especially when associated with long term illnesses. Long term social and structural welfare modifications are required to reduce the burden of caregiving on Italian women.
Acknowledgements
The authors are grateful for funding from the EU Marie Curie Research Training Network on ‘The biomedical and sociological effects of sleep restriction’ (MCRTN-CT-2004-512362).
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