Mothers of adult children with schizophrenia: an ethnographic study

Schizophrenia Research, 11 (1993)2 l-3 1 c 1993 Elsevier Science Publishers B.V. All

21 rights reserved 0920-9964/93/$06.00

SCHRES 00337

Mothers of adult children with schizophrenia: an ethnographic study Kathryn Clarke Institute

A. Ryan*

qf Psychiatry, 250 College Street, Toronto. Ont.. Canada MST IR8

(Received 27 Januari 1993;revision received 19April 1993;accepted 26 April 1993) Most recent investigations of families of individuals with schizophrenia have been concerned with the negative impact of the family on the outcome for the ill relative. Although several investigators have documented the consequences of living with a mentally ill relative to family members, there is still a lack of research exploring the broader experience of family members including how they perceive and define the illness experience, and how they actively manage the situation. While mothers have been frequently identified as primary caregivers of mentally ill children, few investigators have explored the mother’s perspective. A qualitative descriptive study was conducted to gain an understanding of the experience of mothers living with schizophrenic adult children. Ethnographic interviews conducted with five mothers were transcribed and subjected to qualitative analysis. The overall theme that emerged was a lifetime of mothering consisting of two major components, disruption and loss. Disruption was experienced in the mother’s relations with the ill child, and in her own life. A lifetime of mothering involved two dimensions of loss: loss of the child’s potential to lead a ‘normal’ life, and loss of freedom in the mother’s own life. Central to mothers’ descriptions was how they actively managed disruption and loss on a day-to-day basis. Key words:

Mothers; Schizophrenic adult children; Family illness experience;

INTRODUCTION

The need to collaborate with family members in order to optimize the care of individuals with schizophrenia is a prevalent theme in the literature (Grunebaum and Friedman, 1988; Hatfield, 1979; Intagliata et al., 1986). With the shift to community based care, the expectation that families will care for their ill relatives has increased. However, barriers to collaboration between families and mental health professionals are still high given past tendencies of professionals to view the family as a cause of mental illness in the ill relative (Hatfield, 1986). Reports of family dissatisfaction with the mental health system (France11 et al., 1988; Hatfield, 1978;

*Corresponding (416) 979-8621.

author.

Tel: (416) 979-2221

ext. 2433. Fax:

Impact

and management

Potasznik and Nelson, 1984) suggest the need for professionals to gain a better understanding of family members’ perspectives. Anderson (198 1) emphasizes the importance of eliciting family members’ understanding of the chronic illness experience particularly since there may be wide discrepancies between perspectives of family members and health professionals. Given this, it is crucial for health care professionals to understand the illness experience and its management from the perspectives of those who are living with it (Anderson, 198 1). Although many individuals with schizophrenia live at home and rely on family members for support, few studies have looked at the illness experience from the perspective of the family providing care. Many facets of living with a relative with schizophrenia may be problematic. The illness usually strikes young adults, and has an unpredict-

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able course of exacerbations and remissions. As a result, those afflicted may be dependent on parents for an indefinite period of time at a point in their lives when increasing independence is the goal. The symptoms of schizophrenia such as emotional lability, hallucinations and delusions can be difficult to manage and disruptive to those living with the ill person (Chafetz and Barnes, 1989; Hatfield, 1978; Potasznik and Nelson, 1984). Most recent investigations of families with schizophrenic offspring have been concerned with the impact of the family members’ affective responses or ‘expressed emotion’ (EE) on the illness course. Several studies have found that family styles characterized by high EE increase the probability of exacerbation of symptoms and relapse in the nine month period following discharge from hospital (Brown et al.., 1972; Vaughn and Leff, 1976; Vaughn et al., 1984). Several investigators have evaluated psychosocial interventions aimed at altering the emotional climate or level of EE within the family (Hogarty et al., 1986, 1991; Leff et al., 1982, 1985). This body of research tends to emphasize family deficits, and focuses largely on the outcome for the ill relative. Several investigators have examined the negative effects of living with a mentally ill relative from the perspective of caregiver burden (Chafetz and Barnes, 1989; Creer and Wing, 1975; Crotty and Kulys, 1986; Gibbons et al., 1984; Hatfield, 1978; Hoenig and Hamilton, 1966; Noh and Turner, 1987; Noh and Avison, 1988; Potasznik and Nelson, 1984; Thompson and Doll, 1982). However, there is a lack of research that explores the broader experience of family members. Areas which have yet to be studied include how they perceive and define the illness experience, and how they actively manage the situation from day to day. The mother of a child with schizophrenia is usually the main caregiver. Evidence in support of this has been demonstrated in studies of family burden sampling predominantly women who were often mothers of schizophrenic offspring (Chafetz and Barnes, 1989; Cook, 1988; Crotty and Kulys, 1986; Gibbons et al., 1984; Hatfield, 1978; Potasznik and Nelson, 1984; Thompson and Doll, 1982). The broader experience of mothers who provide care to their adult children with schizophrenia has received little attention. The purpose of this pilot study was to explore and describe the

experience of mothers living with schizophrenic adult children. How such mothers define their situation and manage from day to day was a particular focus of this study. This report aims to sensitize health care professionals to the mother’s experience by increasing the understanding of those who are attempting to provide family centered care.

METHODS

A descriptive qualitative design using the ethnographic method (Spradley, 1979) of investigation was employed. Ethnography is appropriate for studies concerned with understanding the world view of individuals, families and cultures from their perspectives (Leininger, 1985). It is concerned with how people define and make sense out of the world in which they live. This approach afforded a unique opportunity for the investigator to capture the mother’s perspective. The Executive Director of a community support group was asked to approach mothers to participate in the study. A brief verbal explanation that addressed the general purpose of the study was provided to assist her with this task. The Executive Director provided names of three participants, one of whom put the investigator in touch with two more potential participants. Five participants recruited from the support group volunteered to participate in the study. Written consent was obtained from all participants. Participants were employed, married, Caucasian women ranging in age from 50 to 62 years. All had children other than the child with schizophrenia although in each family the ill child was the only one still living at home. The schizophrenic adult children ranged in age from 22 to 38 years. This sample included one mother of a daughter and four mothers of sons. The number of years since onset of illness ranged from 6 to approximately 20. At the time of interviewing, all five adult children were engaged in some type of activity outside of the home, such as work or a day program. According to the mothers’ the illness affected each child descriptions, differently in terms of his or her level of functioning and symptomatology. The heterogeneous course

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of schizophrenia was clearly evident in this sample. Despite the differences, the mothers’ experiences were very similar. Data were collected by means of tape-recorded ethnographic interviews (Spradley, 1979) transcribed verbatim. The investigator began first interviews with the following ethnographic explanation and statement regarding the purpose of the study: I’m interested in learning about what you have experienced as a mother of a son/daughter with schizophrenia. I’m interested in knowing what it has been like for you, and would like to learn about it from your point of view. Ethnographic interviews rely on three main types of questions: (1) descriptive questions; (2) structural questions and (3) contrast questions (Spradley, 1979). Open-ended descriptive questions encouraged mothers to tell their stories. An example of a ‘descriptive’ question used in conjunction with the opening statement was the following: Could you tell me what it has been like living with your son/daughter? More focused, structured questions were guided by participants’ expressed thoughts, and emerging categories and patterns. For example, during initial interviews mothers spoke about ways they managed their situations. This guided subsequent interviews when, for example, the investigator asked one mother the following structural question: When I asked you how you manage on a dayto-day basis, you mentioned that you try to get yourself involved in other things. Is there anything else you do on a day-to-day basis to manage your situation? ‘Contrast’ questions explored differences between categories, and were also introduced to delineate the boundaries of these categories. For example, mothers spoke about how they dealt with illness behaviours. It became apparent that there were different ways of dealing with behaviour. The investigator asked contrast questions to gain an understanding of the differences. For example: Can you see any difference between a situation in which you might ‘give in’ or ‘hold back’ and a situation in which you might set limits? Three of the five participants completed second interviews which provided an opportunity to validate findings and ensure that the investigator had not introduced her own biases. The method of data analysis used was adapted

from Spradley (1979). Analysis began line by line as sentences and paragraphs of transcribed interviews were coded, initially using the participant’s own language. Categories were frequently refined and expanded upon as the investigator moved from raw data to higher levels of abstraction. Smaller, specific categories were clustered into more general categories or domains. The process of memo writing facilitated the analytic process towards increasing levels of abstraction and helped the investigator derive meaning from the data. Memos included relevant research findings and concepts from the literature that provided insight into, and support for emerging findings. A tentative scheme depicting the major categories of the mother’s experience and their relationships was developed. This was frequently revised as it was compared and contrasted with raw data and validated with participants. The credibility of findings was enhanced by constantly checking that descriptions, findings and interpretations about the data contained the typical and atypical elements of the data, and that the findings were representative of the group as a whole (Sandelowski, 1986). Dependability and confirmability of findings were enhanced by establishing ‘auditability’ (Lincoln and Guba, 1985). An audit of the investigator’s decision trail was facilitated by a detailed description of the methods used to collect, analyze and interpret data in an extensive report of the study (Ryan, 1992). As well, these methods were subjected to ongoing evaluation by an expert in qualitative methods throughout the research process.

RESULTS A lifetime of mothering The mothers in this study provided rich and detailed descriptions of their experiences living with their schizophrenic adult children. They described living with the ups and downs or ‘peaks and valleys’ that went along with the child’s chronic illness. Mothers provided repeated descriptions of the kind of involvement and concern their situations demanded. Given the nature of this chronic illness with its unpredictable and lengthy course, this involvement and concern seemed interminable. A lifetime of mothering, a phrase coined

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by one of the participants, emerged as the overarching theme. The discussion that follows provides a description of the theme and its components. A representation of the experience of the mothers depicting the main theme and its component parts can be found in Fig. 1. The mothers’ situations demanded that they engage in active mothering for an indefinite period of time which is not typical for mothers of adult children who usually have more freedom as their children become increasingly independent. This experience was clearly all-encompassing and was not unlike the experience of mothering a young child. However, given the actual age of their children, this experience was particularly complex, characterized by ambivalence and dilemmas in care giving. Although the mothers often encouraged and expected age appropriate goals and behaviour from their ‘adult’ children, these mothers were simultaneously faced with regressive behaviour, and the realization that their children were ill, vulnerable, and bound by certain limitations. The central theme of a lifetime ofmothering was comprised of the domains of disruption and loss.

A LIFETIME

Disruption Analysis of data revealed recurrent descriptions of the disorder and interruption experienced by mothers as they lived day-to-day with their ill children. Disruption was experienced in two realms: (1) the relations between mother and child, and (2) the mother’s life. Disruption in the relations between mother and child was related to the illness symptomatology as well as the awareness of the child’s limitations. The interruption imposed by the illness made it difficult for mother and child to engage in a normal adult relationship. Parenting with adult children is distinguished from other phases of parenting in that the active part of the parenting role diminishes (Rapoport et al., 1977). In this study these children experienced difficulties in the transition to adulthood and seemed unable to attain the economic and social independence, and emotional maturity associated with this stage of life. This interruption in the child’s growth is reflected in the mother’s descriptions as they compared their mothering experience to mothering a small child: It’s like having a child, a permanent child that

OF MOTHERING

LOSS

DISRUPTION

Constancy

Disruption in the Relations between Mother & Child Managing Illness Behaviours

protecting/advocating Centrality

Uncertainty in Mother’s

life

Loss of the Child’s Potential

Loss of Freedom in the Mother’s

lack of understanding and support uncertainty during the course of illness

Managing LOSS

uncertainty about the future unpredictability

Setting Limits Normalizing Behaviour

Accommodating c,

Fig. 1. Schematic

representation

of the experience

of mothers

living with schizophrenic

adult children.

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never grows up...so you feel that you’re doing a lifetime of mothering or parenting. Another described the dilemma this created for her when relating to her son: Well actually I can only deal with him on a certain level. Like I can’t talk to him like I do with the other children . . . So I have to treat him more like, at times, like a child than I do an adult, although I don’t want to. The need for these mothers to remain actively involved became apparent as all five focused almost exclusively on illness behaviours and limitations and how they managed them. While specific symptoms and behaviours varied from subject to subject, common to all five mothers’ experiences was living with an individual who experienced disturbances in thinking, feeling and relating to others. As a result, mothers had developed various ways of managing illness hehaviours. In order to maintain some sense of normalcy or balance, mothers exercised an inordinate amount of flexibility and tolerance in the face of disruptive and difficult behaviours. ‘Being careful’, ‘walking on toenails or eggshells’, ‘giving in’, ‘going out of my way’ and ‘not pushing the issue’ were some of the phrases mothers used that reflect the process of accommodating. The phenomenon of caregivers ‘walking on eggshells’ or restricting their own behaviour has been cited in other reports (Chafetz and Barnes, 1989; Lefley, 1987). Mothers also described how they accommodated by adjusting their expectations to the child’s capabilities. Sara Ruddick (1989) proposes that two of the major demands of maternal work are the demand to foster growth and the demand for social acceptability. The mothers in this study continued to strive to meet these demands even though their children were adults. Normalizing hehaviour encompasses the strategies mothers used to elicit more normal or appropriate behaviour from their offspring such as encouraging rational thinking, giving advice, as well as encouraging independence and age appropriate behaviour. Obstacles to the child’s growth encountered by mothers were a lack of motivation and social withdrawal. One mother described: Say they’re going on an adventure through the group and he doesn’t want to go .. . he’ll make up all kinds of excuses. So I just let him talk it

out and I say a couple of hours later, ‘You know, it’d be really nice’. I show him all the good points of being able to do this, and then he’ll agree with me, But he sees it from a different perspective than we do. Like a lot of his thoughts are distorted or he’ll read other things into it, you know. Mothers hoped that their efforts to shape the schizophrenic child’s behaviour would eventually result in him taking on more responsibility and functioning more independently. All five mothers viewed their ill children as being capable of taking on more responsibility for themselves despite their limitations. Disruption in the mother’s lfe was characterized by constancy, centrality, and uncertainty. Constancy refers to the ever present, unremitting nature of their situation which could be compared to that of a mother caring for a young child: Well sometimes...you don’t have the energy to go out. Like it can be an effort to get your hair done...you’re tired and dragged out...like a young mother raising her family. Sometimes they let themselves go because they don’t have enough energy to go out and do shopping...They’re so busy with having a baby in the home. Well that can happen in my opinion in our home. Centrality refers to the mother’s pivotal role in caring for the ill child. The mothers’ situations demanded a great deal of concern for their children and a high level of involvement in their day-today lives. Mothers described a general sense of responsibility which involved protecting and advocating. This encompassed concerns for the child’s safety and well-being, and that he or she be treated with understanding, respect and compassion. They saw that their children were vulnerable as a result of the illness. Factors influencing Centrality were a perceived lack of understanding and a lack of support in mothers’ relations with the community, the mental health system and their own families. All mothers seemed to possess a painful awareness of the lack of understanding of schizophrenia in the community and the stigma associated with this illness. Experiences in which they found the system was not helpful left them feeling angry, frustrated and very disappointed. They recounted situations in which they received inadequate information

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regarding the child’s illness and its management or comments made by professionals were perceived as insensitive. Most mothers gave the impression they carried the weight of responsibility for care within their families and the community. They also described a perceived lack of support services and assistance for themselves and their ill children: . . . But as long as the mothers keep going and putting food in the fridge and helping out, that person’s not going to be helped because the parents are there to do it. And I don’t mind doing it, but I want to have a back-up there. Uncertainty was experienced as mothers dealt with the ambiguous nature and course of the illness and its unpredictability on a day to day basis. They had resigned themselves to the fact that the illness would probably not go away. Despite this, the uncertainty they experienced in association with the nature, course and prognosis of the illness also opened up possibilities such as the hope that their offspring’s condition might improve in time. This paradox is consistent with Mishel’s (1988) theory of uncertainty in illness which proposes that uncertainty can be appraised as a danger or an opportunity. Uncertainty about the ,future and what would happen after the parents were no longer able to be the caregivers was also expressed: You wonder, you worry . . . what are they going to do when you’re not here you know. Let’s face it, I’m not a kid. My husband’s retired, and his brothers are worried about him but they can only take so much of him. Mothers never really knew what they might encounter daily in their interactions with their children. This lead to a feeling of uncertainty more accurately described as unpredictability, as it was related to fluctuations in the illness symptomatology. In the words of one mother, ‘I’ve often said it’s like living on top of a volcano You never know when it’s going to erupt.’ Fluctuations in the illness were difficult to predict and therefore experienced as disruptive. This unpredictability has also been cited in other reports (Chafetz and Barnes, 1989; Chesla, 1988). Mothers described various strategies used to manage disruption. Illness unpredictability and disruption encountered daily were managed by ‘going from day-to-day’ or even ‘minute-to-minute’. The unremitting nature of the mother’s situations was

managed by ‘getting away’ to maintain some sense of normalcy: I feel it’s a bit of a relief when I go out to work the odd day, maybe two or three days a month I’ll go to work. And it’s a bit of a relief for me to get away from it ‘cause I’m away 8 to 14 hours working, and I just feel great. Mothers dealt with their feelings of being alone, and their perceived lack of understanding and support by attending a community support group. This provided them with the opportunity to support one another, share their feelings with others who understood, and maintain hope.

Loss Loss associated with u lifetime of’ mothering was comprised of two dimensions: loss of the child’s potentiul to lead a normal life and loss of,freedom in the mother’s life. Mothers seemed to be aware of their childrens’ inability to experience close relationships with others resulting in their childrens’ experience of isolation and loneliness. Mothers described the sense of loss they felt not seeing their children experience adult goals. This topic evoked tears, sadness and pain: Like when they explain it’s going through a grieving process, I think they’ve really touched it, like the nail on the head. Because our older boys, they weren’t so keen on school. Now JP had high aims. I think he was my college candidate. And we were told right in front of our son that he would never get married, he wouldn’t have kids. Life was going to be up and down, in the hospital and out of hospital. Our lives would probably be hills and valleys that would go along with his hills and valleys. And you know, technically, I guess in a way, that’s the way it is. Heffner (1978) comments that with each step a child takes towards independence he is less dependent on his mother, and the reward for both is increasing freedom. The loss of the child’s potential to lead a normal life created a loss of freedom in the mother’s life. Conflicting emotions were experienced by mothers: Makes me angry, you know. I don’t want to be looking after this child for the rest of my life. I want some freedom. And then you feel guilty for thinking that way . . . and then you think

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well, I want him out of here so I can get on with my life. Mothers described strategies they used to manage loss in their situations. Mothers managed the loss of the Child’s Potential to lead a normal life by accepting the illness and the child’s limitations. Despite this, mothers had hope that some day their son or daughter might find some kind of happiness or meaning in life, or that their condition might improve in time. Mothers saw potential in their children. One mother described her son when he started a new job: Well when he went in at first, he took such an interest in the place that the girl that owned it said, ‘You know, he might even be good to teach’ . . he worked for them for five years, and 1’11 tell you, nobody was more reliable than he was. One mother whose child had been ill for 17 years described how she hoped to get her son connected to a case manager. Despite her child’s severe illness and the mother’s understanding that ‘psychotherapy doesn’t really help schizophrenia’, she believed it was possible for a professional to establish a relationship with her child. She hoped that this would not only benefit her child, but also relieve her of some of the responsibility for caregiving. Another mother looked far and wide for a program for her son that took a more progressive approach. Mothers also managed loss of freedom in their own lives by accepting it, going from day to day and getting away as previously described. They managed to get on with their lives as best they could and maintained hope for the future.

DISCUSSION

The mothers in this study engaged in a lifetime of mothering while living with an adult child suffering from chronic schizophrenia. Mothers continued to protect their children, nurture their growth, and attempt to shape their behaviour in socially acceptable ways for an indefinite period of time. Chesla (1988) in a study of ‘Parents’ Caring Practices and Coping with Schizophrenic Offspring’, suggested that although parents had to change their expectations for the child, parents’ care was still shaped

by basic parenting practices that were adapted in response to the special needs of the schizophrenic child. For example, some parents abandoned their hopes that their children would achieve social and economic independence. Despite this, parents still had hope that their children would eventually find some form of work or activity that would match their capabilities. Similarly, the practices of the mothers in this study can be understood in terms of basic maternal practices adapted to meet the needs of their ill children. Several aspects of disruption reported in this study support findings from the psychiatric caregiver burden research. These include: (1) the experience and impact of difficult illness behaviours (Creer and Wing, 1975; Gibbons et al., 1987; Hatfield, 1978; Noh and Turner, 1987; Potasznik and Nelson, 1984; Thompson and Doll,, 1982); (2) the unpredictability in relation to the symptom pattern (Chafetz and Barnes, 1989; Creer and Wing, 1975; Gibbons et al., 1984; Hatfield, 1978; Potasznik and Nelson, 1984); (3) the day-to-day interruption in caregiver’s lives (Hatfield, 1978; Potasznik and Nelson, 1984; Thompson and Doll, 1982); (4) uncertainty about the future (Chafetz and Barnes, 1989; Hatfield, 1978; Potasnik and Nelson, 1984); (5) the lack of understanding and support from family members, the community and/or the mental health system (Chafetz and Barnes, 1989; Hatfield, 1978; Potasznik and Nelson, 1984; France11 et al., 1988) and (6) the benefit of participation in a community support group (Chafetz and Barnes, 1989; Potasznik and Nelson, 1984). However, with the exception of a few reports (Chafetz and Barnes, 1989; Miller et al., 1990) the domain of loss revealed in this study has received little attention. Chafetz and Barnes (1989) described ‘interminable parenting’ and its dimensions of loss which were similar to those described by the five mothers in this study. Miller et al. (1990) reported that the grief experienced by family members of patients with schizophrenia and bipolar illness included loss related to the way the ill relative used to be before the illness struck, as well as loss related to expectations of what might have been had the relative not become ill. The discrepancies between the mother’s perspective and the perspective of health professionals of the chronic illness experience is apparent in

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their descriptions of perceived lack of understanding and support from professionals. In addition to their perception that current psychiatric services were inadequate, a strong sense of perseverance and hope regarding the child’s potential surfaced in the interviews. A few mothers described that in their experience, this optimistic perspective was different from that of professionals. The tendency amongst professionals to view individuals with chronic schizophrenia as hopeless has been documented in the literature (Krauss and Slavinsky, 1982). Perhaps the knowledge the mother has of the child before he or she became ill opened up possibilities and hope for the future. Health professionals do not have the opportunity to know the child before the illness strikes. Certain aspects of the experience of disruption and loss revealed in this study may not be unique to mothers of schizophrenic offspring. Several investigators have examined the stress experienced by mothers of children with disabilities and/or children with chronic physical illnesses. Their findings include the following: (1) the experience of chronic sorrow (Damrosch and Perry, 1989); (2) concern regarding the child’s well-being particularly when the mother is no longer able to provide care (Cameron et al., 1991; Harris and McHale, 1989; Holroyd and Guthrie, 1986); (3) ambiguity associated with the child’s prognosis (Harris and McHale, 1989); (4) restricted freedom and disruption in usual routines related to the demands of caregiving (Bradshaw and Lawton, 1978; DuPont, 1980; Harris and McHale, 1989; Loebig, 1990; Madiros, 1982); (5) concern about the child’s social rehabilitation and independence development, issues; (Loebig, 1990) and (6) disappointment with 1990; professionals and/or services (Loebig, Madiros, 1982; Stein et al., 1983). Strategies reported as helpful include: maintaining hope 1982); attending support groups (Madiros, (Loebig, 1990; Madiros, 1982) and getting away from the stressful situation (Loebig, 1990). The theme of a lifetime of mothering may also reflect the experience of mothers who care for their handicapped children for an extended and indefinite period of time. However, in contrast to mental and physical disabilities which are often present at birth, schizophrenia usually strikes individuals in their adolescence and young adulthood. These young people are usually well and

leading normal lives prior to the onset of the illness. The interruption imposed by the illness may result in a different kind of experience for mothers of schizophrenic offspring, as compared to mothers of mentally or physically disabled child who are faced with the handicap at birth. Further research in this area might compare and contrast the experiences of these different populations. The pivotal role played by the mothers in this study is consistent with the broader literature on caregivers of relatives wth a chronic illness or disability which has found the majority of caregivers to be women (Gallop et al., 1990). The majority of mothers gave the impression that their level of involvement and concern exceeded that of other family members. Cook (1988) conducted a study to explore how the shift to community residence and treatment has influenced mothers who care for their mentally ill children. She found that mothers reported a high level of involvement in their children’s day-to-day lives and she emphasized the importance of viewing this involvement as a natural outcome of caring for a severely disabled child as opposed to ‘pathological enmeshment’. The findings from this study as well as the study by Cook (I 988) raise some interesting questions about the EE construct which links schizophrenic relapse to the affective responses of family members. Kuipers and Bebbington (1988) describe emotional over-involvement (one of the five measurements comprising the EE construct), as encompassing ‘aspects of over-protecting, self-sacrifice and emotional upset’. They state this pattern is more likely to be shown be a parent and, ‘it can be compared to treating the patient rather like a child, with consequent inappropriate levels of worry being shown by the relative’ (p.895). Without an understanding of the context of the mother’s response to a schizophrenic adult child, health professionals may risk unjustly labeling responses as ‘over-involved’ or ‘over-protective’. What is labeled as over-involvement and overprotecting may in fact be responses which make sense in light of the demands of mothering an adult child suffering from schizophrenia. Ruddick (1982), in describing maternal work, states that interests in the preservation, growth and social acceptability of the child are often and inevitably in conflict with one another. The mothers in this

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study experienced conflict between their interest in protecting the child, and their interest in nurturing the child’s growth towards independence. Balancing these interests was particularly complicated given that their children despite being adults, were suffering from a severe mental illness. As one mother described: Not too many people could throw their kid out onto the street knowing that he was well, let alone knowing that he was sick. And you know, maybe he needs to be able to ‘cut the cord’, so to speak and go it alone. But it’s very, very difficult. Thus, an understanding of the context of the mother’s response to a schizophrenic adult child provides insight into the dilemmas and complexities of the mothering experience. The EE construct does not capture this context and fails to address the origins of parents expressed emotion. The model of a lifetime of mothering provides a broader view that suggests mothers’ responses arise within the context of interactions with the ill child and are influenced by basic mothering practices. Further exploration in this area may provide more insight into the origins of parents expressed emotion. Recommendations Clinical practice with mothers of adult children with schizophrenia may be enhanced by an understanding of the mother’s experience of a lifetime of mothering and the ways in which mothers experience and manage disruption and loss in their day-to-day lives. Health care professionals may provide support to mothers by acknowledging their needs and concerns, and allowing them to express themselves in a supportive and nonjudgmental atmosphere. This pilot study has provided initial insight into the experience of mothers living with schizophrenic adult children. Since this study is limited by its small sample size, and the exclusive use of members of a community support group, further research testing the model of a lifetime of mothering is needed. ‘Elite bias’ which refers to the involvement of participants who are often, ‘the most articulate, accessible or high status members of their group’ is a threat to the credibility of qualitative research (Sandelowski, 1986, p. 32). The sample in this study may represent an ‘elite’ among mothers

living with schizophrenic adult children, given their involvement in a support group, their access to education, and the several years they had been dealing with the illness. Bias may also have been introduced by the use of an intermediary person in the selection of subjects. To address these limitations, further testing could be conducted with a larger and less homogeneous sample including more mothers of female adult children, mothers with ill children at an earlier stage of the illness trajectory, mothers belonging to minority ethnic groups, as well as mothers who are not members of a support group. Further research into the central theme, a lifetime of mothering may yield a deeper understanding of the experience of mothering a schizophrenic adult child including its impact on the lives of women in their fifth and sixth decades. Most of the mothers had been living with their ill children for several years and engaged in caring practices which the investigator sensed were not easy to articulate. Longitudinal studies combining different methods of data collection such as interviewing with participant observation may better capture the fuller experience of mothers and facilitate a deeper understanding of the caring practices these mothers engage in every day. The domain of loss requires further study to provide more insight into the different dimensions of loss experienced by mothers and the ways in which they manage loss. Research into the experience of loss at different stages of the illness trajectory might explore the relationship between the mother’s experience of loss and length of the child’s illness. Finally, the mothers in this study alluded to disruption and conflict within the entire family unit. Research exploring the perspectives of fathers, siblings and grandparents, may increase the understanding of those who are attempting to provide family centered care and suggest early intervention involving all family members. In conclusion, this study illustrates the utility of inductive inquiry into the experience of mothers with living schizophrenic children. adult Ethnographic methodology allowed the investigator to capture the context of the mother’s experiand contributed to a more sensitive ence, understanding of the challenges, dilemmas and complexities faced by these mothers. The model of

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the mother’s experience revealed in this study may be used by health care professionals to enhance understanding of the mother’s experience and to guide sensitive, family centered care.

ACKNOWLEDGEMENTS

The author expresses her deepest appreciation to her thesis chairperson, Kathleen E. Arpin B.Sc.N., M.S., for her guidance and support throughout this project, and committee members: Paula Goering, B.S.N., M.S.N., Ph.D., and Donna L. Wells B.A., M.H.Sc. The author extends sincere thanks to the mothers who shared their personal experiences, and June Beeby, Executive Director of Ontario Friends of Schizophrenics, for being so receptive and willing to assist in the recruitment of participants. The author also thanks Dr. Robert Zipursky for reviewing a draft of this manuscript.

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