ORIGINAL RESEARCH
MOTHERS REQUIRING DIALYSIS: PARENTING AND END-STAGE KIDNEY DISEASE Kaylene M. Wadd1, Paul N. Bennett2,3, Julian Grant4 Renal Unit, Mackay Base Hospital, Queensland Health, Mackay, Queensland, Australia 2 School of Nursing and Midwifery, Deakin University, Victoria, Australia 3 Monash Health, Victoria, Australia 4 School of Nursing and Midwifery, Flinders University of South Australia, Adelaide, Australia
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Wadd K.M., Bennett P.N., Grant J. (2014). Mothers requiring dialysis: Parenting and end-stage kidney disease. Journal of Renal Care 40(2), 140–146.
SUMMARY Background: Mothers requiring dialysis to treat end-stage kidney disease face the challenging demands of the disease and dialysis treatment in addition to their role as a parent. Objective: To describe the experience of mothers who require haemodialysis. Methods: Four mothers receiving haemodialysis treatment for end-stage kidney disease in regional Australia were interviewed to explore the mothers’ experiences, attitudes, beliefs and values of their dual role as mothers and haemodialysis recipients. Results: The overarching theme emerging from the data was the competing roles of motherhood and dialysis. Four key subthemes emerged: fitting everything in, internal family challenges, lost connections and striving for normality. Conclusion: Being a mother adds a range of complexities to being on dialysis. While managing dialysis, mothers struggle to care for their children and stay connected with family life. Nephrology health professionals are uniquely placed to support mothers and need to develop strategies to ease their burdens of care.
K E Y W O R D S Dialysis End-stage kidney disease Mothers
INTRODUCTION End-stage kidney disease (ESKD) imposes treatment burdens on work, family and household responsibilities (Smith & Soliday
BIODATA Kaylene M. Wadd completed her Masters of Nursing at Flinders University of South Australia. She also holds a Nephrology Nursing Certificate and a Graduate Diploma in Family and Child Health Nurse. She is a peritoneal dialysis nurse, and formerly a haemodialysis nurse for Queensland Health. CORRESPONDENCE
Kaylene M. Wadd, Renal Unit, Mackay Base Hospital, PO Box 5580, Mackay Mail Centre, Mackay, QLD 4741, Australia Tel.: þ61 7 4885 5586 Fax: þ61 7 4885 5599 Email: [email protected]
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2001; Polaschek 2003). In addition to long hours on dialysis, people can be hospitalised for treatment-related complications, limiting their capacity to engage in family and other social activities. The added responsibilities that mothers face can add further challenges. Mothers can find it more difficult to handle the physical and emotional demands of raising children when they are sick and tired (Koulouglioti et al. 2009). Fatigue can contribute to ‘an increased frequency and intensity of parenting daily hassles and a lack of energy to monitor their child’s whereabouts’ (White et al. 2009, p. 339). Significantly, the fatigue experienced by mothers receiving haemodialysis is intensified by their treatment and their illness and has the potential to compound the challenges of motherhood. Although little has been published exploring the issues encountered by mothers receiving haemodialysis, findings from mothers coping with chronic disease provide some insight. Altschuler and Dale (1999) found chronic illnesses in general altered what mothers were able to do. Mothers developed reversed patterns of dependence (i.e. child caring for parent) that made it more difficult to discipline their children. Expectations of their relationship with their offspring changed as a result of their chronic illness. Self-care needs competed with caring for their child’s well-being (White et al. 2009). Neglecting
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their personal care had the potential to jeopardise their health and limit their availability as mothers even more. Illness and fatigue diminished mother’s capacity to be able to physically and emotionally care for their children (Sevon 2007), thereby decreasing the child’s dependence on their mothers, which caused the mothers to feel they had prematurely robbed their children of their childhood (Altschuler and Dale 1999). Being able to engage with their children in school social activities was also reduced (Koulouglioti et al. 2009) with educational institutions expecting parents to engage in their children’s schooling (Grolnick & Slowiaczek 1994). Involvement required a mother’s time and energy, which may be in short supply when mothers are tired from their haemodialysis treatment. Haemodialysis regimens have an effect on relationships with friends and family. Parents reported a significant alteration in the meaningful relationships with their children (Smith & Soliday 2001). ‘Mom was not mom’ (Kidner 1999, p. 21) and family communication, interactions and dynamics changed (Smith & Soliday 2001). Family members found it difficult to understand that their mothers were chronically sick and could not perform their traditional maternal undertakings (Lee et al. 2007). Mothers found it difficult to provide quality care for their children (Smith & Soliday 2001) because fatigue affected their ability to be good mothers (Lee et al. 2007). Simple activities such as camping and holidays were often too strenuous for mothers to be involved in (Al-Arabi 2006). Added to this was the social isolation where the lack of involvement in family activities was caused by the long hours required to be on dialysis (Al-Arabi 2006). Family members’ concern for their mothers had a negative effect on the mums on dialysis (Smith & Soliday 2001) who believed that their parenting role had changed because of their requirement for dialysis (Hagren et al. 2001). The only study that provides insight exploring the views of parents receiving haemodialysis relied on written responses to assess the ‘impact of parental kidney disease on families’ (Smith & Soliday 2001). Although other studies explored issues encountered by parents who were participants, the focus of these studies was not on the experience of the parents and not on the experience of being a mother whilst reliant on haemodialysis. Given the traditional role of the mother in Australia is to provide much of the nurturing and emotional support for their children a study exploring the particular issues
facing mothers receiving haemodialysis was required. Thus, the aim of this study to explore and describe the experience of mothers who require haemodialysis.
METHODS This study used an interpretive qualitative approach to provide a further understanding of the experience of mothers requiring dialysis. A qualitative research approach can give voices to research participants, and validate their stories and perspectives using their language. Interpretive qualitative research enables researchers to obtain, explore and critique different perceptions and interpretations of similar experiences from participants (Munhall 2007). Semi-structured interviews were used to provide a more in-depth approach to obtaining data as they enabled the researcher ‘to probe and investigate…views and experiences’ (Tod 2006, p. 341). Interviews were via telephone because the patients lived in locations over 100 km from where the interviewer lived. Interviews lasted between 60 and 90 minutes with questions guided by the pre-prepared question guide (Table 1). Prompting and probing was undertaken to explore areas particularly relevant to the study aims. As the aim of this study was to gather thick description from a small number of participants, semi-structured interviews provided rich and informative data. Participants were recruited from Queensland, Australia. Advertisements were placed in all five dialysis units administered by the regional health service. Only six mothers on dialysis volunteered, however two potential participants declined further involvement after preliminary discussions. This left four mothers who reviewed the participant information and provided written informed consent for the study. A second round of recruitment two months following did not render any further participants. All interviews were conducted by telephone on a one-to-one basis, audio-recorded and transcribed verbatim. All participants were given pseudonyms to protect their identity. The data were thematically analysed using the six phases of qualitative data analysis as described by Braun and Clarke (2006). These consisted of familiarisation with the data, generating codes, looking for themes, reviewing these themes, naming and defining these themes and finally writing the research report (Braun & Clarke 2006). Analysis in qualitative research requires credibility, dependability and transferability to be demonstrated (Guba & Lincoln 1989). The credibility of this
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Open ended questions So, how did you come to be on dialysis? Tell me what it is like to like to be on dialysis Tell me about your family What is your family’s reaction to you needing dialysis, and to your dialysis treatment? Tell me how being on dialysis affects what you do as a parent What are the issues that being on dialysis creates for you as a parent? How do you think dialysis treatment affects your family? What has helped you as a parent to better manage dialysis and your role as a parent at the same time? What assistance/support would help you in your role as a parent? What assistance/support would you suggest or like to see for parents in your situation? Probing questions/statements to elicit deeper information: How do you feel about that? Tell me more What does this mean to you? Can you give me an example of this?
her children had moved out of the 0–18 years age range. One participant was caring for a disabled child, and also had a child living overseas. Another participant was initially separated from her older child when she relocated to Australia because of her illness. Each participant had varying causes of renal disease, although they all used haemodialysis for their renal replacement therapy. Three of the participants undertook haemodialysis at home because it provided them with more flexibility. The mother of the disabled child dialysed overnight because she was then available during the day to care for her child. One mother had her treatment at a hospital dialysis unit and was required to fit into the unit’s timetable by dialysing on Monday, Wednesday and Friday mornings.
Table 1: Semi-structured interview questions.
study was confirmed through meticulous reflective journal documentation and providing the opportunity for the mothers on dialysis to review transcripts for accuracy. Dependability was achieved by providing a decision trail throughout the study, while transferability was achieved by providing rich contextual information, without identifying the participants, enabling other researchers to judge the findings and conclusions. Achieving credibility, dependability and transferability ensures confirmability of the study (Koch 2006). Interview questions, participant responses followed by the researcher interpretations of these responses, have been provided to demonstrate confirmability of this study. Ethics approval was obtained from the human research ethics committees of Flinders University, South Australia #4741 and Queensland Health #HREC/10/QRBW/73.
RESULTS Two mothers were married and had husbands in paid employment. The remaining two mothers were functioning as single parents. One had a boyfriend who visited occasionally. The other had a partner who worked away, often for weeks at a time. The two unmarried mothers were born overseas and one specifically moved to Australia to find treatment for her illness. Three participants had children in the 0–18 years age range. The other participant had children who were teenagers attending school when she commenced dialysis. At the time of interview
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Despite the varied times on dialysis, and the different family structure of participants, the common overarching meta-theme was the competing roles of life as a mother and life on dialysis. The sub-themes emerging from the interview data were fitting everything in, internal family challenges, lost connections and striving for normality. FITTING EVERYTHING IN All participants freely discussed how difficult it was to be a parent who required haemodialysis because it consumed much of their time (at least 18 hours per week) and made it difficult to fit everything into their life. ‘I work I get home I rush, I do a load of washing, I do this and that so that I can get on real quick so that I can get off not too late… well just basically I can’t do what I need to do after work … makes it hard.’ (Mary) Even changing to nocturnal dialysis did not eliminate the rush. There were deadlines to meet in order to complete treatment hours and disconnect in time to get a child to school in the morning. ‘Yes…you know I cannot be doing [dialysis] later than what I’m doing now. I cannot do enough [dialysis] because if I do late then I cannot make much hour because then I have to wake up about 6 o’clock.’ (Daphne) Overall the combination of parenting and dialysis exhausted the mothers.
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‘…yeah it’s not only because I’m in dialysis that I’m exhausted: because if you on dialysis exhausted that means the whole dialysis people will be exhausted. You know, it’s the things that go along with it as well. It’s the dialysis and the children….’ (Daphne) Trying to undertake haemodialysis in addition to parenting their children, manage the activities associated with parenting (such as taking their children to sport), complete their usual household tasks and care for themselves caused these mothers to become exhausted and become down, depressed, or as Jo describe, to have a ‘melt down’. ‘I say the other day when I had that melt down….they’re very understanding…the lady in the next chair said “We all have those days darling. Don’t worry.’ (Jo) INTERNAL FAMILY CHALLENGES Dialysis affected simple things. Dialysis limited the number of meals eaten together as a family. There were times when the effects of their disease and its treatment caused the mothers to struggle completing basic tasks such as vacuuming, mopping or even cooking a meal. It restricted the type of activities they regularly engaged in. ‘Sometime when I go home I try to cook something. When I feel bit sick I just turn it off and go and lie down for a while.’ (Betty) ‘… physical stuff yeah … you know I’m probably more likely to watch a movie with [daughter] than you know go and play tennis like we used to.’ (Jo) Mothers also spent time away from their family due to frequent hospitalisation or medical appointments. ‘I just want to be at home ‘cause sometime my daughter … grow[s] up by herself. She just want[s] to be home too so that’s only me and her…’ (Betty) Betty, a single mother who underwent in-centre treatment, had to choose between being at the centre in the morning and therefore unavailable to assist her child get ready for school, or not being home in the evening after school because she was having her haemodialysis treatment. Mothers wanted to attend their childrens’ sports activities or parent–teacher
meetings but could not. Although they found that things became easier as their children grew up, caring for family was still hard. LOST CONNECTIONS The mothers’ requirement to stay at home for haemodialysis treatment made it more difficult to maintain close relationships with their extended family. Family visits were cut short to get home for treatment. Special arrangements were required in order to visit the family who lived elsewhere in the state, or in another state but significantly for one mother it was almost impossible to visit family overseas or for the extended family to understand the dialysis process. As Betty said: ‘they don’t understand… They[‘ve] never seen it before… Yes, so my mum and dad just thought that oh yeah she’ll come home. But I sa[id] ‘oh no I’m on the machine I can’t’.’ (Betty) Mothers struggled not only with their illness but also with the consequences of separation from family and friends. The decreased network limited the family support leading to frustration: ‘…very frustrating you know when people say ‘do you want to go out for dinner’ or whatever and you can’t go because you really do have to dialyse … I might have not dialysed last night but I have to do it tonight.’ (Jo) In particular, the time demands imposed by haemodialysis prevented socialisation for children and mothers with school networks, particularly because it limited or inhibited the relaxation and play that usually occurred after school. Furthermore, the time when they were free did not always suit the families of their children’s friends and being connected to the machine prevented supervision of children and limited times when children’s friends could visit. ‘…and it’s hard to have kids [here] I won’t have kids here when I’m on the machine because I just can’t get up and check on [th]em… So it makes it hard.’ (Mary) The need for planning that haemodialysis also caused limited spontaneity in social activities, or prevented socialisation altogether. Even though friends offered spontaneously to be supportive, this was not often possible.
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‘Someone’ll come around ‘oh we’ll have a barbeque while you are here’ it’s like yeah OK. But I don’t know how that’s going to happen if I’m on the machine.’ (Mary) Children were also reluctant to invite their friends over due to their mother being unwell. Their friend’s parents encouraged them to socialise at their home rather than burden the mother who required haemodialysis. The mother’s need for support as she undertook haemodialysis also restricted social activities of other family members. STRIVING FOR NORMALITY Mothers wanted others to see and treat them as ‘normal’ despite the disabling disease they were endeavouring to manage. They were reluctant to talk about their illness, particularly with their children, even if the child was scared their mother would die. They continued to present a veneer of normality. ‘I don’t talk about it unless I have to so I’ve never asked them how they feel about it.’ (Jo) Parents’ reluctance to inform the school of their illness created at least one awkward moment that was discussed during interview. ‘…he went to school one day and … he talked about his [parent] having to have needles every day … With that the teacher got somebody to come around and see because they thought [the parent]was on drugs or something (chuckles).’ (Jo) Parents positioned their machines so as to try and shut them out of their life when not dialysing. They also put on a front or ‘happy face’ and adopted an uncomplaining attitude. ‘People ask you and you say yeah, yeah, good, great thanks … I just don’t think a lot of people tell people how they feel.’ (Jo) These practices may have contributed to others’ lack of understanding of the treatment and the associated time constraints. It was difficult for parents to have normal family holidays. Those on the transplant list found the need to be instantly contactable
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placed restrictions on where they could go and what they could do. ‘But I’d have to spend a day dialysing, next day skiing, next day dialysing; so it’s not really a holiday.’ (Mary) ‘When we’re travelling we have to make arrangements twelve months ahead to get into a hospital somewhere, if you can get in. A lot of times you can’t get in.’ (Jo) Therefore, when it was possible to get the family away for a ‘holiday’ the dialysis routine impacted significantly on the holiday. Overall the themes emerging from the data represented the struggle of the competing roles of life as a mother and a life requiring dialysis: fitting everything in, internal family struggles, losing social and family connections, and simply striving for normality.
DISCUSSION This is the first report focussed on mothers describing their attempt to incorporate haemodialysis into a life that was previously dominated by caring for their children. Mothers acknowledged that fatigue and time pressures contributed to their difficulties, a finding previously reported by Hagren et al. (2005) who explored both mothers and fathers. Similar to other chronic illnesses, people on dialysis functioned at lower physical levels, experienced more sleep problems and had higher levels of depression and fatigue than mothers without chronic illness (White et al. 2009). Their desire to be ‘good’ mothers to their children was an overwhelming challenge. For participants in this study who need to prioritise their own self-care due to medical reasons, the desire to be, and be seen as a ‘good’ mother, added a significant challenge to their experience of mothering while on dialysis. Despite contemporary constructs of women’s expanding roles in society, West and Zimmerman (2002) argue that women continue to scrutinise their roles against an accountability framework of how they are perceived and characterised. In particular this relates to how they are characterised as mothers who place their children at the centre of their lives. Hays (1996) proposed the ideology of ‘intensive’ mothering whereby the emotional, time-intensive work of mothering is held to be greater than all others roles in the women’s life. This ideology remains persistent and
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challenging for mothers in western contexts (Butler 2010; Christopher 2012). Nichols and Springford (1984) established that a large number of parents who required haemodialysis felt they were bad parents. The struggle with the ‘complexity of balancing being a parent with being a patient’ (Altschuler & Dale 1999, p. 35) can place mothers in a situation where they feel they cannot meet their children’s needs. The mothers in this study spoke of their difficulty in providing support and encouragement at school and extracurricular activities (such as attending parent-teacher meetings and being support parents on school excursions). White et al. (2009) previously reported that mothers requiring haemodialysis were unable to support their child’s activities and found that other chronically ill mothers engaged less with their children. Although not specifically focussed on mothers Lee et al. (2007) reported parents having haemodialysis were too tired to do what they had previously done for their children.
The mothers reported strategies that they used to assist them with the dual parenting and dialysis recipient roles. These were obtaining assistance, choosing home dialysis and engaging their spirituality. Isenberg and Trisolini (2008) found the most requested needs from people on dialysis were for support groups for family members, emotional support for those on dialysis and a list of emergency contact numbers, although they were wary of any assistance or interventions that could be offered (Steinglass et al. 1982). Spirituality played a role; prayer and church support were found to help some participants. The church family and its associated beliefs may provide incredible support for distressed people but not all consider it favourably (Bennett et al. 2013). Mothers who preferred the flexibility that home dialysis treatment offered described having more control over their treatment schedule. Although their treatment requirements remained necessary, their flexibility enabled them to better adjust to fit in with their children’s needs.
STUDY STRENGTHS AND LIMITATIONS Social disconnection related to difficulties in maintaining employment and socialising can occur in this group. Tong et al. (2009) found that people requiring haemodialysis felt lonely and isolated because others could not relate to their situation. Smith and Soliday (2001) found others stayed away from the person requiring haemodialysis because of pity and fear. Connectedness has been associated with improved health indicators and negatively associated with adverse health indicators, particularly for children (Barber & Mikles Schluterman 2008). In this study, the disconnectedness extended to the difficulty in assisting their children to nurture relationships. For example, having to cut visits short (and pull their children away) in order to get home and dialyse and not being able to get away to visit other family members because of the mother’s need to have haemodialysis made it difficult for the child to develop bonds. Although the children of these mothers were not the focus of this study the mothers highlighted the lack of specific guidelines or questions available to guide their children through the experience of having a mother on dialysis. There are limited specific tools available that health professionals can provide to assist mothers on how to assess how their child is negotiating this difficult time. These educational tools could also be targeted towards the children’s school and encourage the teacher to be aware of the difficulties the child may encounter with a mother on dialysis.
The participants for this study were drawn from a large Australian regional nephrology service where there were only six mothers on dialysis; four of those mothers agreed to participate. This small number could be seen as a limitation as there were no further participants available in this service. However, as the aim of this qualitative study was to gather thick description from a small number of participants, the participant interviews provided rich and informative data. A further limitation of this study was that confirmability through mixed methods was not undertaken due to limitations in the resources for the study.
IMPLICATIONS FOR PRACTICE An improved understanding of the challenges that mothers requiring dialysis face can assist health professionals such as nephrologists, nurses and social workers in providing mothers with the unique care that they need. For example, using a family centred approach to care, primarily employed in paediatric nursing environments, might facilitate comprehensive and inclusive care. A family-centred model encourages health professionals to always work with the client in the context of their family environment rather than purely on an individual basis. Encouraging flexible regimes such as home haemodialysis and out-of-hours services, providing assistance with children’s needs with educational tools for children and schools may improve the quality of life of dialysis mothers. Age-appropriate educational packages for children are required and a supporting package for teachers would also be beneficial. Haemodialysis
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clinicians need to be informed of appropriate services, referral process, and be confident to take initiatives to provide referrals. Any positive measures that nephrology clinicians can provide to contribute to a better life for mothers on dialysis should be a priority of their care.
developing education packages and providing flexible treatment options.
CONCLUSION
AUTHOR CONTRIBUTIONS
Participants identified issues and challenges faced with being a mother and requiring haemodialysis. Findings from this first reported study interviewing only mothers on dialysis identified benefits of acknowledging the importance of their children,
All three authors were involved in study conception and design, analysis of data and drafting and approval of the final manuscript.
CONFLICT OF INTEREST No conflict of interest has been declared by the authors.
REFERENCES Al-Arabi S. (2006). Quality of life: subjective descriptions of challenges to patients with end stage renal disease. Nephrology Nursing Journal 33(3), 285–291. Altschuler J. & Dale B. (1999). On being an ill parent. Clinical Child Psychology and Psychiatry 4(23), 23–37. Barber B. & Mikles Schluterman J. (2008). Connectedness in the lives of children and adolescents: a call for greater conceptual clarity. Journal of Adolescent Health 43, 209–216. Bennett P., Bonner A., Andrews J. et al. (2013). Using images to communicate with patients on dialysis. Journal of Communication in Healthcare 6(1), 12–21. Butler K. (2010). Intensive mothering in British Columbia: understanding the impact of an ‘Investing-in-Children’ framework on mothering ideology. International Journal of Canadian Studies 42, 243– 253. Braun V. & Clarke V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology 3, 77–101. Christopher K. (2012). Extensive mothering: employed mothers’ constructions of the good mother. Gender & Society 26(1), 73–96. Grolnick W. & Slowiaczek M. (1994). Parents’ involvement in children’s schooling: a multidimensional conceptualization and motivational model. Child Development 65(1), 237–252. Guba E. & Lincoln Y. (1989). Fourth Generation Evaluation. Newbury Park, CA: Sage Publications. Hagren B., Pettersen I. & Severinsson E. (2001). The haemodialysis machine as a lifeline: experiences of suffering from end-stage renal disease. Journal of Advanced Nursing 34(2), 196–202. Hagren B., Pettersen I. & Severinsson E. (2005). Maintenance haemodialysis: patients’ experiences of their life situation. Journal of Clinical Nursing 14(3), 294–300. Hays S. (1996). The Cultural Contradictions of Motherhood. New Haven, CT: Yale University Press. Isenberg K. & Trisolini M. (2008). Information needs and roles for family members of dialysis patients. Dialysis & Transplantation 37(2), 50–57. Kidner M. (1999). The Lived Experiences of Persons Dependent on Hemodialysis. MSN Thesis, Grand Valley State University, USA.
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Koch T. (2006). Establishing rigour in qualitative research: the decision trail. Journal of Advanced Nursing 53(1), 91–100. Koulouglioti C., Cole R. & Kitzman H. (2009). The role of children’s routines of daily living, supervision, and maternal fatigue in preschool children’s injury risk. Research in Nursing & Health 32(5), 517–529. Lee B., Lin C., Chaboyer W. et al. (2007). The fatigue experience of haemodialysis patients in Taiwan. Journal of Clinical Nursing 16(2), 407–413. Munhall P. (2007). Nursing Research: A Qualitative Perspective (ed Munhall P.), 4th edn, pp. 145–210. Sudbury, MA: Jones and Bartlett Publishers. Nichols K. & Springford V. (1984). The psycho-social stressors associated with survival by dialysis. Behaviour Research and Therapy 22(5), 563–574. Polaschek N. (2003). Living on dialysis: concerns of clients in a renal setting. Journal of Advanced Nursing 41(1), 44–52. Sevon E. (2007). Narrating ambivalence of maternal responsibility. Sociological Research Online 12(2), http://www.socresonline.org. uk/12/2/sevon.html (accessed 20 July 2011). Smith S. & Soliday E. (2001). The effects of parental chronic kidney disease of the family. Family Relations 50(2), 171–177. Steinglass P., Gonzalez S., Dosovitz I. et al. (1982). Discussion groups for chronic hemodialysis patients and their families. General Hospital Psychiatry 4, 7–14. Tod A. (2006). Interviewing. In The Research Process in Nursing (eds Gerrish K. & Lacy A.), 5th edn, p. 341 Oxford, UK: Blackwell Publishing. Tong A., Sainsbury P. & Chadban S. (2009). Patients’ experiences and perspectives of living with CKD. American Journal of Kidney Diseases 53(4), 689–700. West C. & Zimmerman D. (2002). doing gender. In doing Gender, doing Difference (eds Fenstermaker S. & West C.)., pp. 9–24. New York, NY: Routledge. White C., White M. & Fox M. (2009). Maternal fatigue and its relationship to the caregiving environment. Families Systems & Health 27(4), 325–345.
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MOTHERS REQUIRING DIALYSIS: PARENTING AND END-STAGE KIDNEY DISEASE Kaylene M. Wadd1, Paul N. Bennett2,3, Julian Grant4 Renal Unit, Mackay Base Hospital, Queensland Health, Mackay, Queensland, Australia 2 School of Nursing and Midwifery, Deakin University, Victoria, Australia 3 Monash Health, Victoria, Australia 4 School of Nursing and Midwifery, Flinders University of South Australia, Adelaide, Australia
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Wadd K.M., Bennett P.N., Grant J. (2014). Mothers requiring dialysis: Parenting and end-stage kidney disease. Journal of Renal Care 40(2), 140–146.
SUMMARY Background: Mothers requiring dialysis to treat end-stage kidney disease face the challenging demands of the disease and dialysis treatment in addition to their role as a parent. Objective: To describe the experience of mothers who require haemodialysis. Methods: Four mothers receiving haemodialysis treatment for end-stage kidney disease in regional Australia were interviewed to explore the mothers’ experiences, attitudes, beliefs and values of their dual role as mothers and haemodialysis recipients. Results: The overarching theme emerging from the data was the competing roles of motherhood and dialysis. Four key subthemes emerged: fitting everything in, internal family challenges, lost connections and striving for normality. Conclusion: Being a mother adds a range of complexities to being on dialysis. While managing dialysis, mothers struggle to care for their children and stay connected with family life. Nephrology health professionals are uniquely placed to support mothers and need to develop strategies to ease their burdens of care.
K E Y W O R D S Dialysis End-stage kidney disease Mothers
INTRODUCTION End-stage kidney disease (ESKD) imposes treatment burdens on work, family and household responsibilities (Smith & Soliday
BIODATA Kaylene M. Wadd completed her Masters of Nursing at Flinders University of South Australia. She also holds a Nephrology Nursing Certificate and a Graduate Diploma in Family and Child Health Nurse. She is a peritoneal dialysis nurse, and formerly a haemodialysis nurse for Queensland Health. CORRESPONDENCE
Kaylene M. Wadd, Renal Unit, Mackay Base Hospital, PO Box 5580, Mackay Mail Centre, Mackay, QLD 4741, Australia Tel.: þ61 7 4885 5586 Fax: þ61 7 4885 5599 Email: [email protected]
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2001; Polaschek 2003). In addition to long hours on dialysis, people can be hospitalised for treatment-related complications, limiting their capacity to engage in family and other social activities. The added responsibilities that mothers face can add further challenges. Mothers can find it more difficult to handle the physical and emotional demands of raising children when they are sick and tired (Koulouglioti et al. 2009). Fatigue can contribute to ‘an increased frequency and intensity of parenting daily hassles and a lack of energy to monitor their child’s whereabouts’ (White et al. 2009, p. 339). Significantly, the fatigue experienced by mothers receiving haemodialysis is intensified by their treatment and their illness and has the potential to compound the challenges of motherhood. Although little has been published exploring the issues encountered by mothers receiving haemodialysis, findings from mothers coping with chronic disease provide some insight. Altschuler and Dale (1999) found chronic illnesses in general altered what mothers were able to do. Mothers developed reversed patterns of dependence (i.e. child caring for parent) that made it more difficult to discipline their children. Expectations of their relationship with their offspring changed as a result of their chronic illness. Self-care needs competed with caring for their child’s well-being (White et al. 2009). Neglecting
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their personal care had the potential to jeopardise their health and limit their availability as mothers even more. Illness and fatigue diminished mother’s capacity to be able to physically and emotionally care for their children (Sevon 2007), thereby decreasing the child’s dependence on their mothers, which caused the mothers to feel they had prematurely robbed their children of their childhood (Altschuler and Dale 1999). Being able to engage with their children in school social activities was also reduced (Koulouglioti et al. 2009) with educational institutions expecting parents to engage in their children’s schooling (Grolnick & Slowiaczek 1994). Involvement required a mother’s time and energy, which may be in short supply when mothers are tired from their haemodialysis treatment. Haemodialysis regimens have an effect on relationships with friends and family. Parents reported a significant alteration in the meaningful relationships with their children (Smith & Soliday 2001). ‘Mom was not mom’ (Kidner 1999, p. 21) and family communication, interactions and dynamics changed (Smith & Soliday 2001). Family members found it difficult to understand that their mothers were chronically sick and could not perform their traditional maternal undertakings (Lee et al. 2007). Mothers found it difficult to provide quality care for their children (Smith & Soliday 2001) because fatigue affected their ability to be good mothers (Lee et al. 2007). Simple activities such as camping and holidays were often too strenuous for mothers to be involved in (Al-Arabi 2006). Added to this was the social isolation where the lack of involvement in family activities was caused by the long hours required to be on dialysis (Al-Arabi 2006). Family members’ concern for their mothers had a negative effect on the mums on dialysis (Smith & Soliday 2001) who believed that their parenting role had changed because of their requirement for dialysis (Hagren et al. 2001). The only study that provides insight exploring the views of parents receiving haemodialysis relied on written responses to assess the ‘impact of parental kidney disease on families’ (Smith & Soliday 2001). Although other studies explored issues encountered by parents who were participants, the focus of these studies was not on the experience of the parents and not on the experience of being a mother whilst reliant on haemodialysis. Given the traditional role of the mother in Australia is to provide much of the nurturing and emotional support for their children a study exploring the particular issues
facing mothers receiving haemodialysis was required. Thus, the aim of this study to explore and describe the experience of mothers who require haemodialysis.
METHODS This study used an interpretive qualitative approach to provide a further understanding of the experience of mothers requiring dialysis. A qualitative research approach can give voices to research participants, and validate their stories and perspectives using their language. Interpretive qualitative research enables researchers to obtain, explore and critique different perceptions and interpretations of similar experiences from participants (Munhall 2007). Semi-structured interviews were used to provide a more in-depth approach to obtaining data as they enabled the researcher ‘to probe and investigate…views and experiences’ (Tod 2006, p. 341). Interviews were via telephone because the patients lived in locations over 100 km from where the interviewer lived. Interviews lasted between 60 and 90 minutes with questions guided by the pre-prepared question guide (Table 1). Prompting and probing was undertaken to explore areas particularly relevant to the study aims. As the aim of this study was to gather thick description from a small number of participants, semi-structured interviews provided rich and informative data. Participants were recruited from Queensland, Australia. Advertisements were placed in all five dialysis units administered by the regional health service. Only six mothers on dialysis volunteered, however two potential participants declined further involvement after preliminary discussions. This left four mothers who reviewed the participant information and provided written informed consent for the study. A second round of recruitment two months following did not render any further participants. All interviews were conducted by telephone on a one-to-one basis, audio-recorded and transcribed verbatim. All participants were given pseudonyms to protect their identity. The data were thematically analysed using the six phases of qualitative data analysis as described by Braun and Clarke (2006). These consisted of familiarisation with the data, generating codes, looking for themes, reviewing these themes, naming and defining these themes and finally writing the research report (Braun & Clarke 2006). Analysis in qualitative research requires credibility, dependability and transferability to be demonstrated (Guba & Lincoln 1989). The credibility of this
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Open ended questions So, how did you come to be on dialysis? Tell me what it is like to like to be on dialysis Tell me about your family What is your family’s reaction to you needing dialysis, and to your dialysis treatment? Tell me how being on dialysis affects what you do as a parent What are the issues that being on dialysis creates for you as a parent? How do you think dialysis treatment affects your family? What has helped you as a parent to better manage dialysis and your role as a parent at the same time? What assistance/support would help you in your role as a parent? What assistance/support would you suggest or like to see for parents in your situation? Probing questions/statements to elicit deeper information: How do you feel about that? Tell me more What does this mean to you? Can you give me an example of this?
her children had moved out of the 0–18 years age range. One participant was caring for a disabled child, and also had a child living overseas. Another participant was initially separated from her older child when she relocated to Australia because of her illness. Each participant had varying causes of renal disease, although they all used haemodialysis for their renal replacement therapy. Three of the participants undertook haemodialysis at home because it provided them with more flexibility. The mother of the disabled child dialysed overnight because she was then available during the day to care for her child. One mother had her treatment at a hospital dialysis unit and was required to fit into the unit’s timetable by dialysing on Monday, Wednesday and Friday mornings.
Table 1: Semi-structured interview questions.
study was confirmed through meticulous reflective journal documentation and providing the opportunity for the mothers on dialysis to review transcripts for accuracy. Dependability was achieved by providing a decision trail throughout the study, while transferability was achieved by providing rich contextual information, without identifying the participants, enabling other researchers to judge the findings and conclusions. Achieving credibility, dependability and transferability ensures confirmability of the study (Koch 2006). Interview questions, participant responses followed by the researcher interpretations of these responses, have been provided to demonstrate confirmability of this study. Ethics approval was obtained from the human research ethics committees of Flinders University, South Australia #4741 and Queensland Health #HREC/10/QRBW/73.
RESULTS Two mothers were married and had husbands in paid employment. The remaining two mothers were functioning as single parents. One had a boyfriend who visited occasionally. The other had a partner who worked away, often for weeks at a time. The two unmarried mothers were born overseas and one specifically moved to Australia to find treatment for her illness. Three participants had children in the 0–18 years age range. The other participant had children who were teenagers attending school when she commenced dialysis. At the time of interview
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Despite the varied times on dialysis, and the different family structure of participants, the common overarching meta-theme was the competing roles of life as a mother and life on dialysis. The sub-themes emerging from the interview data were fitting everything in, internal family challenges, lost connections and striving for normality. FITTING EVERYTHING IN All participants freely discussed how difficult it was to be a parent who required haemodialysis because it consumed much of their time (at least 18 hours per week) and made it difficult to fit everything into their life. ‘I work I get home I rush, I do a load of washing, I do this and that so that I can get on real quick so that I can get off not too late… well just basically I can’t do what I need to do after work … makes it hard.’ (Mary) Even changing to nocturnal dialysis did not eliminate the rush. There were deadlines to meet in order to complete treatment hours and disconnect in time to get a child to school in the morning. ‘Yes…you know I cannot be doing [dialysis] later than what I’m doing now. I cannot do enough [dialysis] because if I do late then I cannot make much hour because then I have to wake up about 6 o’clock.’ (Daphne) Overall the combination of parenting and dialysis exhausted the mothers.
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‘…yeah it’s not only because I’m in dialysis that I’m exhausted: because if you on dialysis exhausted that means the whole dialysis people will be exhausted. You know, it’s the things that go along with it as well. It’s the dialysis and the children….’ (Daphne) Trying to undertake haemodialysis in addition to parenting their children, manage the activities associated with parenting (such as taking their children to sport), complete their usual household tasks and care for themselves caused these mothers to become exhausted and become down, depressed, or as Jo describe, to have a ‘melt down’. ‘I say the other day when I had that melt down….they’re very understanding…the lady in the next chair said “We all have those days darling. Don’t worry.’ (Jo) INTERNAL FAMILY CHALLENGES Dialysis affected simple things. Dialysis limited the number of meals eaten together as a family. There were times when the effects of their disease and its treatment caused the mothers to struggle completing basic tasks such as vacuuming, mopping or even cooking a meal. It restricted the type of activities they regularly engaged in. ‘Sometime when I go home I try to cook something. When I feel bit sick I just turn it off and go and lie down for a while.’ (Betty) ‘… physical stuff yeah … you know I’m probably more likely to watch a movie with [daughter] than you know go and play tennis like we used to.’ (Jo) Mothers also spent time away from their family due to frequent hospitalisation or medical appointments. ‘I just want to be at home ‘cause sometime my daughter … grow[s] up by herself. She just want[s] to be home too so that’s only me and her…’ (Betty) Betty, a single mother who underwent in-centre treatment, had to choose between being at the centre in the morning and therefore unavailable to assist her child get ready for school, or not being home in the evening after school because she was having her haemodialysis treatment. Mothers wanted to attend their childrens’ sports activities or parent–teacher
meetings but could not. Although they found that things became easier as their children grew up, caring for family was still hard. LOST CONNECTIONS The mothers’ requirement to stay at home for haemodialysis treatment made it more difficult to maintain close relationships with their extended family. Family visits were cut short to get home for treatment. Special arrangements were required in order to visit the family who lived elsewhere in the state, or in another state but significantly for one mother it was almost impossible to visit family overseas or for the extended family to understand the dialysis process. As Betty said: ‘they don’t understand… They[‘ve] never seen it before… Yes, so my mum and dad just thought that oh yeah she’ll come home. But I sa[id] ‘oh no I’m on the machine I can’t’.’ (Betty) Mothers struggled not only with their illness but also with the consequences of separation from family and friends. The decreased network limited the family support leading to frustration: ‘…very frustrating you know when people say ‘do you want to go out for dinner’ or whatever and you can’t go because you really do have to dialyse … I might have not dialysed last night but I have to do it tonight.’ (Jo) In particular, the time demands imposed by haemodialysis prevented socialisation for children and mothers with school networks, particularly because it limited or inhibited the relaxation and play that usually occurred after school. Furthermore, the time when they were free did not always suit the families of their children’s friends and being connected to the machine prevented supervision of children and limited times when children’s friends could visit. ‘…and it’s hard to have kids [here] I won’t have kids here when I’m on the machine because I just can’t get up and check on [th]em… So it makes it hard.’ (Mary) The need for planning that haemodialysis also caused limited spontaneity in social activities, or prevented socialisation altogether. Even though friends offered spontaneously to be supportive, this was not often possible.
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‘Someone’ll come around ‘oh we’ll have a barbeque while you are here’ it’s like yeah OK. But I don’t know how that’s going to happen if I’m on the machine.’ (Mary) Children were also reluctant to invite their friends over due to their mother being unwell. Their friend’s parents encouraged them to socialise at their home rather than burden the mother who required haemodialysis. The mother’s need for support as she undertook haemodialysis also restricted social activities of other family members. STRIVING FOR NORMALITY Mothers wanted others to see and treat them as ‘normal’ despite the disabling disease they were endeavouring to manage. They were reluctant to talk about their illness, particularly with their children, even if the child was scared their mother would die. They continued to present a veneer of normality. ‘I don’t talk about it unless I have to so I’ve never asked them how they feel about it.’ (Jo) Parents’ reluctance to inform the school of their illness created at least one awkward moment that was discussed during interview. ‘…he went to school one day and … he talked about his [parent] having to have needles every day … With that the teacher got somebody to come around and see because they thought [the parent]was on drugs or something (chuckles).’ (Jo) Parents positioned their machines so as to try and shut them out of their life when not dialysing. They also put on a front or ‘happy face’ and adopted an uncomplaining attitude. ‘People ask you and you say yeah, yeah, good, great thanks … I just don’t think a lot of people tell people how they feel.’ (Jo) These practices may have contributed to others’ lack of understanding of the treatment and the associated time constraints. It was difficult for parents to have normal family holidays. Those on the transplant list found the need to be instantly contactable
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placed restrictions on where they could go and what they could do. ‘But I’d have to spend a day dialysing, next day skiing, next day dialysing; so it’s not really a holiday.’ (Mary) ‘When we’re travelling we have to make arrangements twelve months ahead to get into a hospital somewhere, if you can get in. A lot of times you can’t get in.’ (Jo) Therefore, when it was possible to get the family away for a ‘holiday’ the dialysis routine impacted significantly on the holiday. Overall the themes emerging from the data represented the struggle of the competing roles of life as a mother and a life requiring dialysis: fitting everything in, internal family struggles, losing social and family connections, and simply striving for normality.
DISCUSSION This is the first report focussed on mothers describing their attempt to incorporate haemodialysis into a life that was previously dominated by caring for their children. Mothers acknowledged that fatigue and time pressures contributed to their difficulties, a finding previously reported by Hagren et al. (2005) who explored both mothers and fathers. Similar to other chronic illnesses, people on dialysis functioned at lower physical levels, experienced more sleep problems and had higher levels of depression and fatigue than mothers without chronic illness (White et al. 2009). Their desire to be ‘good’ mothers to their children was an overwhelming challenge. For participants in this study who need to prioritise their own self-care due to medical reasons, the desire to be, and be seen as a ‘good’ mother, added a significant challenge to their experience of mothering while on dialysis. Despite contemporary constructs of women’s expanding roles in society, West and Zimmerman (2002) argue that women continue to scrutinise their roles against an accountability framework of how they are perceived and characterised. In particular this relates to how they are characterised as mothers who place their children at the centre of their lives. Hays (1996) proposed the ideology of ‘intensive’ mothering whereby the emotional, time-intensive work of mothering is held to be greater than all others roles in the women’s life. This ideology remains persistent and
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challenging for mothers in western contexts (Butler 2010; Christopher 2012). Nichols and Springford (1984) established that a large number of parents who required haemodialysis felt they were bad parents. The struggle with the ‘complexity of balancing being a parent with being a patient’ (Altschuler & Dale 1999, p. 35) can place mothers in a situation where they feel they cannot meet their children’s needs. The mothers in this study spoke of their difficulty in providing support and encouragement at school and extracurricular activities (such as attending parent-teacher meetings and being support parents on school excursions). White et al. (2009) previously reported that mothers requiring haemodialysis were unable to support their child’s activities and found that other chronically ill mothers engaged less with their children. Although not specifically focussed on mothers Lee et al. (2007) reported parents having haemodialysis were too tired to do what they had previously done for their children.
The mothers reported strategies that they used to assist them with the dual parenting and dialysis recipient roles. These were obtaining assistance, choosing home dialysis and engaging their spirituality. Isenberg and Trisolini (2008) found the most requested needs from people on dialysis were for support groups for family members, emotional support for those on dialysis and a list of emergency contact numbers, although they were wary of any assistance or interventions that could be offered (Steinglass et al. 1982). Spirituality played a role; prayer and church support were found to help some participants. The church family and its associated beliefs may provide incredible support for distressed people but not all consider it favourably (Bennett et al. 2013). Mothers who preferred the flexibility that home dialysis treatment offered described having more control over their treatment schedule. Although their treatment requirements remained necessary, their flexibility enabled them to better adjust to fit in with their children’s needs.
STUDY STRENGTHS AND LIMITATIONS Social disconnection related to difficulties in maintaining employment and socialising can occur in this group. Tong et al. (2009) found that people requiring haemodialysis felt lonely and isolated because others could not relate to their situation. Smith and Soliday (2001) found others stayed away from the person requiring haemodialysis because of pity and fear. Connectedness has been associated with improved health indicators and negatively associated with adverse health indicators, particularly for children (Barber & Mikles Schluterman 2008). In this study, the disconnectedness extended to the difficulty in assisting their children to nurture relationships. For example, having to cut visits short (and pull their children away) in order to get home and dialyse and not being able to get away to visit other family members because of the mother’s need to have haemodialysis made it difficult for the child to develop bonds. Although the children of these mothers were not the focus of this study the mothers highlighted the lack of specific guidelines or questions available to guide their children through the experience of having a mother on dialysis. There are limited specific tools available that health professionals can provide to assist mothers on how to assess how their child is negotiating this difficult time. These educational tools could also be targeted towards the children’s school and encourage the teacher to be aware of the difficulties the child may encounter with a mother on dialysis.
The participants for this study were drawn from a large Australian regional nephrology service where there were only six mothers on dialysis; four of those mothers agreed to participate. This small number could be seen as a limitation as there were no further participants available in this service. However, as the aim of this qualitative study was to gather thick description from a small number of participants, the participant interviews provided rich and informative data. A further limitation of this study was that confirmability through mixed methods was not undertaken due to limitations in the resources for the study.
IMPLICATIONS FOR PRACTICE An improved understanding of the challenges that mothers requiring dialysis face can assist health professionals such as nephrologists, nurses and social workers in providing mothers with the unique care that they need. For example, using a family centred approach to care, primarily employed in paediatric nursing environments, might facilitate comprehensive and inclusive care. A family-centred model encourages health professionals to always work with the client in the context of their family environment rather than purely on an individual basis. Encouraging flexible regimes such as home haemodialysis and out-of-hours services, providing assistance with children’s needs with educational tools for children and schools may improve the quality of life of dialysis mothers. Age-appropriate educational packages for children are required and a supporting package for teachers would also be beneficial. Haemodialysis
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clinicians need to be informed of appropriate services, referral process, and be confident to take initiatives to provide referrals. Any positive measures that nephrology clinicians can provide to contribute to a better life for mothers on dialysis should be a priority of their care.
developing education packages and providing flexible treatment options.
CONCLUSION
AUTHOR CONTRIBUTIONS
Participants identified issues and challenges faced with being a mother and requiring haemodialysis. Findings from this first reported study interviewing only mothers on dialysis identified benefits of acknowledging the importance of their children,
All three authors were involved in study conception and design, analysis of data and drafting and approval of the final manuscript.
CONFLICT OF INTEREST No conflict of interest has been declared by the authors.
REFERENCES Al-Arabi S. (2006). Quality of life: subjective descriptions of challenges to patients with end stage renal disease. Nephrology Nursing Journal 33(3), 285–291. Altschuler J. & Dale B. (1999). On being an ill parent. Clinical Child Psychology and Psychiatry 4(23), 23–37. Barber B. & Mikles Schluterman J. (2008). Connectedness in the lives of children and adolescents: a call for greater conceptual clarity. Journal of Adolescent Health 43, 209–216. Bennett P., Bonner A., Andrews J. et al. (2013). Using images to communicate with patients on dialysis. Journal of Communication in Healthcare 6(1), 12–21. Butler K. (2010). Intensive mothering in British Columbia: understanding the impact of an ‘Investing-in-Children’ framework on mothering ideology. International Journal of Canadian Studies 42, 243– 253. Braun V. & Clarke V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology 3, 77–101. Christopher K. (2012). Extensive mothering: employed mothers’ constructions of the good mother. Gender & Society 26(1), 73–96. Grolnick W. & Slowiaczek M. (1994). Parents’ involvement in children’s schooling: a multidimensional conceptualization and motivational model. Child Development 65(1), 237–252. Guba E. & Lincoln Y. (1989). Fourth Generation Evaluation. Newbury Park, CA: Sage Publications. Hagren B., Pettersen I. & Severinsson E. (2001). The haemodialysis machine as a lifeline: experiences of suffering from end-stage renal disease. Journal of Advanced Nursing 34(2), 196–202. Hagren B., Pettersen I. & Severinsson E. (2005). Maintenance haemodialysis: patients’ experiences of their life situation. Journal of Clinical Nursing 14(3), 294–300. Hays S. (1996). The Cultural Contradictions of Motherhood. New Haven, CT: Yale University Press. Isenberg K. & Trisolini M. (2008). Information needs and roles for family members of dialysis patients. Dialysis & Transplantation 37(2), 50–57. Kidner M. (1999). The Lived Experiences of Persons Dependent on Hemodialysis. MSN Thesis, Grand Valley State University, USA.
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Koch T. (2006). Establishing rigour in qualitative research: the decision trail. Journal of Advanced Nursing 53(1), 91–100. Koulouglioti C., Cole R. & Kitzman H. (2009). The role of children’s routines of daily living, supervision, and maternal fatigue in preschool children’s injury risk. Research in Nursing & Health 32(5), 517–529. Lee B., Lin C., Chaboyer W. et al. (2007). The fatigue experience of haemodialysis patients in Taiwan. Journal of Clinical Nursing 16(2), 407–413. Munhall P. (2007). Nursing Research: A Qualitative Perspective (ed Munhall P.), 4th edn, pp. 145–210. Sudbury, MA: Jones and Bartlett Publishers. Nichols K. & Springford V. (1984). The psycho-social stressors associated with survival by dialysis. Behaviour Research and Therapy 22(5), 563–574. Polaschek N. (2003). Living on dialysis: concerns of clients in a renal setting. Journal of Advanced Nursing 41(1), 44–52. Sevon E. (2007). Narrating ambivalence of maternal responsibility. Sociological Research Online 12(2), http://www.socresonline.org. uk/12/2/sevon.html (accessed 20 July 2011). Smith S. & Soliday E. (2001). The effects of parental chronic kidney disease of the family. Family Relations 50(2), 171–177. Steinglass P., Gonzalez S., Dosovitz I. et al. (1982). Discussion groups for chronic hemodialysis patients and their families. General Hospital Psychiatry 4, 7–14. Tod A. (2006). Interviewing. In The Research Process in Nursing (eds Gerrish K. & Lacy A.), 5th edn, p. 341 Oxford, UK: Blackwell Publishing. Tong A., Sainsbury P. & Chadban S. (2009). Patients’ experiences and perspectives of living with CKD. American Journal of Kidney Diseases 53(4), 689–700. West C. & Zimmerman D. (2002). doing gender. In doing Gender, doing Difference (eds Fenstermaker S. & West C.)., pp. 9–24. New York, NY: Routledge. White C., White M. & Fox M. (2009). Maternal fatigue and its relationship to the caregiving environment. Families Systems & Health 27(4), 325–345.
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