PEDIATRICS Vol. 121 No. 2 February 2008, pp. 349-360 (doi:10.1542/peds.2006-3470)
REVIEW ARTICLE |
Experiences of Parents Who Have Children With Chronic Kidney Disease: A Systematic Review of Qualitative Studies
a National Health and Medical Research Council Centre for Clinical Research Excellence in Renal Medicine, Centre for Kidney Research, Children's Hospital at Westmead, Westmead, New South Wales, Australia
b School of Public Health, University of Sydney, Sydney, New South Wales, Australia
c Population Health, Sydney South West Area Health Service, Sydney, New South Wales, Australia
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ABSTRACT |
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 TOP ABSTRACT METHODSRESULTSDISCUSSIONREFERENCES |
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OBJECTIVE. The objective of this study was to describe the experiences of parents who have children with chronic kidney disease.
METHODS. We conducted a systematic review and meta-ethnography of studies that had used in-depth interviews or focus groups to explore experiences of parents with children who have chronic kidney disease (predialysis, hemodialysis, peritoneal dialysis, or after kidney transplantation). We searched 5 electronic databases (through to August 2005), Medline, Embase, PsycINFO, Cumulative Index to Nursing and Allied Health Literature, and Sociofile/Sociological Abstract, and reference lists of relevant articles.
RESULTS. Sixteen articles that reported the experiences of parents of 358 children with chronic kidney disease were included. Ten themes emerged, which we grouped into 3 interrelated clusters: intrapersonal (living with constant uncertainty, stress, and maintaining vigilance despite experiencing fatigue), interpersonal (medicalization of the parental role, dependence on and conflict with staff, and disrupted peer relationships), and external issues (management of the medical regimen, pursuit of information, organizing transportation, accommodation and finances, adhering to the child's liquid and diet restrictions, and balancing medical care with domestic responsibilities).
CONCLUSIONS. In addition to "normal" parental roles, being a parent of a child with chronic kidney disease demands a high-level health care provider, problem solving, information seeking, and financial and practical skills at a time when the capacity to cope is threatened by physical tiredness, uncertainty, and disruption to peer support within and outside the family structure. Parents of children with chronic kidney disease need multidisciplinary care, which may lead to improved outcomes for their children.
Abbreviations: CKD—chronic kidney disease
Children with chronic kidney disease (CKD) have an incurable condition. They and their families face a lifetime of medical treatment and uncertainty. Renal replacement therapy with dialysis and kidney transplantation for end-stage kidney disease, the most severe form of CKD, has meant that survival is possible, but mortality remains 30 times higher than for children without kidney disease,1 and hospitalization, infection, delayed growth and development, short stature, and bone disease are frequent complications.2,3 Care is complex and multidisciplinary and often requires multiple medications (some delivered subcutaneously or intravenously), invasive procedures, thrice-weekly hemodialysis for 4 to 5 hours or continuous peritoneal dialysis, and nutritional supplementation via enteral tubes and pump devices.
Given the complexity of care required, parents and guardians adopt a health care provider role, in addition to their usual parental responsibilities, and the quality of care that they provide is an important determinant of the outcome for their children.4–7 Parents become nurses, pharmacists, and physicians for their children. Parents deliver home-based interventions, including dialysis and nutritional supplementation, which are technically demanding and in hospital are provided by highly trained nursing staff. They monitor their child's health and recognize symptoms that warrant more specialized assessment and intervention. Many of these are requirements for all parents of children with chronic disease, but the demands on parents of children with kidney disease are greater because of the complexity of the care, especially for children who are on home dialysis.
Because of the central role of parents in the care of children with CKD, their own health and well-being are important. Parents of children with CKD have reported a lower quality of life, difficulties in managing the child's care, and higher levels of anxiety and maladaptive behavior.8,9 This in turn can have a detrimental impact on the child's personal development and medical treatment. Sufficient support for parents may prevent or ameliorate these problems and indirectly achieve better outcomes for children.
This systematic review summarizes published qualitative studies that examined parents' experiences about caring for a child with CKD. Although the review focuses on CKD, the experiences of parenting a child with CKD are likely to share much with parenting a child who is technologically dependent or chronically ill.10–12 For this reason, the results can inform the development, implementation, and evaluation of support strategies that are offered by general practitioners and speciality multidisciplinary teams for parents who have children with CKD.
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METHODS |
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Selection Criteria
Studies using interviews or focus groups to explore the experiences of parents of children and adolescents with CKD were included. A child was defined as
21 years of age, and any stage of kidney disease was included (predialysis, dialysis, or transplant). Non-English articles were excluded to prevent cultural and linguistic bias in translations. Articles were excluded when they used structured questionnaires as the primary method for data collection or included >30% of data from parents of children without CKD. Observational epidemiologic studies, editorials, reviews, nonresearch articles, and studies that did not elicit data from parents were also excluded.
Literature Search
Medical Subject Headings (MeSH) terms and text words for CKD (predialysis, dialysis, and transplant) were combined with terms relating to parents (marriage, divorce, and marital satisfaction) or children and then combined with MeSH terms and text words for psychological (adaptation, stress, depression, mental fatigue, and mental health) and sociological (support, adjustment, socioeconomic factors, behavior, group processes, and interpersonal relations) concepts, communication, life-change events, and quality of life. The searches were conducted in Medline (1966 through August 2005), PsycINFO (1806 through August 2005), Cumulative Index to Nursing and Allied Health Literature (CINAHL) (1982 through August 2005), Embase (1980 through August 2005), and Sociofile/Sociological Abstracts (1960 through August 2005) using a detailed search strategy (see Appendix ) The journals Qualitative Health Research and Qualitative Research were searched by using key words relating to kidney disease. We also searched reference lists of relevant studies and reviews.
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Two reviewers (Ms Tong and Ms Lowe) screened the abstracts, and studies were discarded when they did not fit the inclusion criteria. Studies that seemed to include relevant data or information were retrieved, and their full-text versions were analyzed and examined for study eligibility. Any uncertainties and disagreements were resolved in consultation among the reviewers.
Quality of Reporting
Unlike for randomized, controlled trials; diagnostic test studies; and observational studies, no uniform guidelines for reporting qualitative studies are available13; therefore, we searched for tools that are used to appraise qualitative studies14–20 and for quality assessment checklists in systematic reviews of qualitative studies.21–26 We distilled existing tools and checklists into a composite checklist of items that covered the characteristics of the research team, study design, and analysis and reporting of findings. We did not aim to assess the quality of each study; rather, our intention was to assess the explicitness and comprehensiveness of reporting. The criteria for each domain are shown in Table 1.
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Synthesis of Findings
We performed a synthesis of the studies that met the inclusion criteria, drawing on the technique of meta-ethnography developed by Noblit and Hare27 and on modifications to this approach proposed by Campbell et al.25 We followed the meta-ethnographic approach by recording the key concepts of each study and systematically identifying common and disparate concepts and themes within and across the studies. To begin the synthesis, we used a recent article by Baines et al,28 then analyzed subsequent articles in comparison with the other studies. Each article was read repeatedly to ensure that all concepts were integrated and the relationships between the key concepts of each study were explored. We used the notion of first-order, second-order, and third-order constructs to analyze and reinterpret the studies. First-order constructs are insights offered by the respondents of each original study. All participant quotations and parent responses that were paraphrased by the original researchers were extracted as first-order constructs and grouped for each stage of CKD (predialysis, dialysis, and transplant). Second-order constructs are the interpretive themes that were developed by the original researchers from their first-order constructs. We described and listed the themes described by the authors of each original study and counted the number of studies that identified each theme. Third-order constructs are derived from the synthesis of multiple studies. We developed third-order constructs by analyzing the second-order constructs to identify new, common themes.
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RESULTS |
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Literature Search and Study Descriptions
Our search yielded 338 articles. Of these, 242 were excluded after title and abstract review because they were ineligible. Of the remaining 96 potentially eligible studies, 80 were excluded because they were nonqualitative research, had no parent participants, did not include children with CKD, were duplicate articles, or included only adult patients. Except for interviews and focus groups, the search did not yield other qualitative study types. Sixteen studies could be included in the review (Fig 1). The characteristics of the study populations of all 16 studies are presented in Table 2.28–43 In 14 studies, data were collected by in-depth or semistructured interviews, and 2 studies used focus groups. The 16 studies included parents of 358 children with CKD. Of the 15 studies that reported the child's stage of CKD at the time of data collection, 34 children were in the predialysis stage, 41 children were on peritoneal dialysis, 112 were undergoing hemodialysis, and 106 children had received a kidney transplant. Often, parents described their experiences from previous disease stages in addition to the current stage. Eight studies included parent experiences during the predialysis stage, 14 while their child was on dialysis, and 9 during the transplant stage. Of the 10 studies that stated the number of participating fathers and mothers separately, mothers represented 86% (168) of interviewees. All studies were conducted in North America, continental Europe, or the United Kingdom.
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Quality of Reporting of Included Studies
Study details were not provided in almost all studies (Table 1). Interview questions and prompts were not provided in any article, so we were unable to determine whether unreported themes were attributable to parents' not being prompted by the researchers, parents' being prompted but choosing not to discuss the theme, or authors' deciding not to report the themes that parents discussed. Studies generally provided insight into the experiences, perceptions, and views of parents, but we were unable to assess how data analysis was conducted, because details on data analysis were often not reported.
Studies were not excluded or weighted on the basis of the quality of reporting assessment, because methodologic details with which we could assess study quality were limited. Empiric data on the relationship between the quality of reporting qualitative research and the quality of methods are not available; therefore, we have no solid basis on which to judge the quality of the original findings. However, we include the appraisals here because it may indirectly lead to improvements in the quality of reporting qualitative research.
Synthesis
First-Order Constructs
An illustrative selection of first-order constructs is presented in Table 3 (the full list is available from the authors).
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Second-Order Constructs
The explanations and theories offered by the authors of the original studies (second-order constructs) were classified by stage of CKD. The quotations provided belong to the authors of each original study.
Predialysis Stage
Self-accusation and blame were reported in 6 of 8 studies, with 4 reporting depression, generalized anger, and uncertainty surrounding misdiagnosis and the child's future (Table 4).
"The endless questions which are poured on the doctors—when families feel free to do so—indicate overall anxiety and the need to unload guilt feelings that are most important when parents actually feel ambivalent toward this particular child. Depression, self-accusation, and aggression toward others are outward signs of the search for someone...[who] can be held responsible for the wrong from which they feel they suffer."39
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TABLE 4 Second-Order Constructs: Predialysis Patients
"The immediate responses [are] characterized by pessimism, a felt lack of understanding, and a fear that the child might die."33
Dialysis Stage
The 3 most common themes were emotional turmoil, uncertainty about the child's prognosis, and surrendering control of the child to the clinical staff. Studies reported that parents were satisfied with the provision of care for their child but also identified poor communication between parents and staff. Authors of 6 studies identified a restriction on the social life of parents. Lengthy and frequent hospital visits were commonly reported, and most authors described that parents experienced difficulties with providing medical care and ensuring adherence to liquid and diet restrictions (Table 5).
"Seeing the child in distress at a time when her own role was unclear seemed, to the mother, to symbolize her loss of control over the child's life, a need to share, if not to surrender, parenting."30
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TABLE 5 Second-Order Constructs: Dialysis Patients
"A mother who has a child of 4.5 years of age, with crying, tells the child's reaction for this process: ‘Whenever a person drinks water in front of him, he is always gulping as if he were drinking. And this situation makes me miserable.’"29
"The mothers knew that fear of the ill child kept many people away—particularly, a fear of not knowing what to say. ‘It was like people we chummed around with were scared.’"35
"When their children were hospitalized, they usually felt a need to remain and to maintain the watchful eye. They often met criticism from staff who felt the mothers were being mistrustful or difficult. The mothers often experienced hurt and anger when they themselves were judged. It was important for them to watch over their children, but they also wanted to be recognized as having expertise in their child's care, to be trusted, and to join the health care team. The mothers wanted to be involved and consulted, rather than remaining on the periphery of the decision-making process. They felt threatened by discussions about their child that occurred within hearing range but of which they were not a part. This activity as well as the withholding of reports by health professionals heightened their uncertainty and provoked fear."35
"Ongoing discussions between doctors and the parents hoping to achieve compliance with the dietary restrictions did not really succeed. In response to noncompliance, frequent hospitalizations of the child, decided on by the head doctor, were seen by the parents as disorganising their family life."43
Transplant Stage
Parents reported similar emotions to those reported during the dialysis stage but expressed added uncertainty about rejection of the kidney graft. Also, authors identified an increased social freedom and improved interaction within the family. Themes related to the parent kidney donor were repeatedly identified, including the development of a special bond between the child and parent donor and spousal concern over the donor's well-being. Six studies reported struggles relating to diet and medication adherence (Table 6).
"The ‘special’ relationship between the patient and the donor often placed husband and wife at odds over such family matters as discipline of the patient and other siblings, and how much freedom to allow the patient."41
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TABLE 6 Second-Order Constructs: Transplant Patients
"Transplant complications, like those of dialysis, threw child and family back into the depression and protest of early treatment stages, with feelings of bitterness added as the result of lost hopes."30
"After the turmoil of the first 6 to 12 months, patterns of daily life are apparently restored fairly readily in most families if the child with the transplant is thriving physically."34
Third-Order Constructs
From the second-order constructs, we identified 10 interrelated third-order constructs that we grouped into 3 themes: (1) intrapersonal issues, which described the personal experiences of the parent (ie, the psychological, emotional, and physical impact of having a child with CKD); (2) interpersonal issues, which were the experiences concerning the parents' relationships with other people, specifically family members, staff, and friends and acquaintances; and (3) external issues, which included the practical needs, responsibilities, and logistic concerns expressed by the parents (eg, household care, diet and nutrition, transport, relocation and employment, medical regimen and hospitalization, information) (Fig 2).
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Common intrapersonal experiences include the shock faced by parents during the initial diagnosis, followed by constant uncertainty about their child's prognosis. The lack of confidence in delivering care for the child, the pressure of having to exercise unwavering vigilance, and fatigue were also common themes.
The main interpersonal experiences of parents varied. Some parents reported that their marital relationship strengthened, whereas others described partner neglect and abandonment. Family life was disrupted, and some parents faced sibling jealousy and resentment. Generally, the illness constrained the social life of parents, but this improved after transplantation. Friends and extended family provided practical support, but a lack of understanding was commonly reported. The control of clinical staff over the ill child and the lack of open communication created tension and frustration in parent–staff relationships. Continuity of care providers reduced parental anxiety.
The main external issue was managing the multiple responsibilities, including adhering to the medical regimen, observing the ill child's symptoms, integrating medical care, and fulfilling domestic duties. Liquid and diet restrictions were particularly difficult to adhere to. Parents were often concerned about their child's appearance, development, and future prospects. Parents were required to arrange transport and accommodation, and some experienced financial hardship. Not all parents received adequate information on the illness and treatment.
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DISCUSSION |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONREFERENCES |
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We identified 10 themes in the experiences of parents of children with CKD, and we grouped these into 3 clusters: (1) intrapersonal issues (involving the psychological, emotional, and physical impact of the child's illness); (2) interpersonal issues (involving the parents' interaction within the family and relationships with staff and friends); and (3) external issues (involving the practical needs, responsibilities, and logistic concerns of parents). Parents lived with constant uncertainty about their child's medical prognosis and future prospects. Despite experiencing physical fatigue, parents exercised vigilance in monitoring their child for symptoms and in managing complex health care responsibilities. Medical intervention meant that parents had to adapt to a redefined parenting role; parents became dependent on staff members, and some experienced conflict with health care providers. The need to deliver difficult and long-term medical interventions directly and to facilitate many others indirectly by being the conduit between child and health care provider interfered with the social life and support networks of parents. Parents were required to cope with the intense medical regimen; comprehend information about the disease and treatment; arrange transport, accommodation, and finances; adhere to the child's liquid and diet restrictions; and endeavor to maintain home duties at a time when their own networks for support and resilience were threatened.
A major strength of our study was that we used systematic review methods. We conducted a comprehensive search and an independent assessment of studies with predetermined inclusion and exclusion criteria. Study reporting was appraised and presented according to explicit assessment criteria. Findings were synthesized using an established and reproducible method. To assist health professionals to understand and use the themes, we developed a simple, pragmatic, clinically relevant diagrammatic representation of the findings (Fig 2). Both the analytic process and the framework could be applied to other aspects of pediatric clinical care.
No attempt was made to contact the authors of the 16 articles, and original interview and focus group transcripts were not obtained. We depended on what was reported by the authors of the primary studies. In qualitative research, empiric data on the relationship between the quality of the reporting and the quality of the methods are not available. For this reason, we did not assess the association between the quality of the reporting and the findings in the 16 studies.
Checklists including CONSORT (Consolidated Standards of Reporting Trials),44 QUOROM (Quality of Reporting of Meta-analyses),45 and STARD (Standards for Reporting of Diagnostic Accuracy)46 for assessing quantitative studies are underpinned by empiric work, but there is no empiric work available as yet to support the validity of quality assessment items for qualitative studies. There is no universally accepted list of quality assessment criteria for qualitative studies and no evidence about the validity of the quality of reporting as a proxy for actual study quality; therefore, we chose not to prioritize or assign weighting to the findings of each study because this would have been based on unverifiable judgments. Instead, we adopted a pragmatic approach and gave equal consideration to the findings of the 16 studies.
Although this review described parents' experience of coping with CKD, our synthesis showed some broad commonalities with findings offered by the wider and more recent literature on parenting children with chronic illness or disability.10–12,47–49 For example, 1 study described sustained parental uncertainty as "living with a time bomb," which was intensified by waiting for clinical test outcomes, enduring prolonged intervals between appointments, and observing abnormal changes in their child's physical appearance and behavior.10 A recent literature review on the needs of parents with chronically sick children found that a lack of control caused parental stress, and parents faced issues relating to the management of time, management of illness, reorganization of family life, and management of illness.11 Another review on the experiences of mothers with disabled children highlighted psychological and somatic distress, fatigue, social suffering, financial instability, and combative interactions with health professionals.12 The themes that emerged from these 2 reviews were similar to those identified in our study.
Future qualitative studies on parental experiences in CKD, particularly using in-depth interviews, could expand and assess the constructs developed in our review. Additional research could identify parental issues that are specific to particular geographic, demographic, and institutional contexts. We also suggest research with support organizations and health care providers involved in the care of children with CKD to assess concordance and dissimilarities between their perspectives and parent perspectives on parental experiences and needs. Their perceptions about parental experiences and needs, based on their encounters with multiple parents, could supplement data obtained from parents and provide health care providers and parents a more complete and accurate understanding of parental experiences.
In pediatric clinical care, efforts are often focused on providing medical treatment and tests, performing technical procedures, and monitoring the affected child's well-being, rather than explicitly considering the parents as a target of intervention both to benefit the child indirectly and to make explicit that parents deserve care in their own right. With a better understanding of parent experiences, health care providers could provide more supportive and empathetic care. This systematic review of qualitative studies highlights the need for the clinical team to encompass strategies to provide more support to parents as an important component of pediatric clinical care.
A framework for improving the quality of support services provided to parents who have children with CKD can be developed by extrapolating data from the third-order constructs presented in Fig 2. The development, implementation, and evaluation of support interventions would require collaboration with parents and relevant stakeholders, including clinical services, and professional and consumer organizations.
Our principal recommendation to health care providers is to develop, implement, and evaluate programs that aim to improve the intrapersonal, interpersonal, and external experiences of parents; however, the reporting of the original studies' methods was always incomplete, and therefore our specific recommendations should be given careful but cautious consideration. On the basis of this review, strategies to improve intrapersonal well-being should aim to reduce parental anxiety and increase the confidence of parents to manage care for the ill child. The health care team should provide continued attention and be ready to consult, give guidance, and provide opportunities for parents to express their concerns and feelings. Parents should be equipped and trained to deliver home-based care and be made aware of and prepared for the role adjustment and emotions that they may experience. For interpersonal issues, we recommend programs that aim to strengthen the family relationship and reduce neglect of other family members, such as family counseling and sibling programs. Parent support groups allow parents to learn and support other parents who face a similar situation. Professional training for health care personnel can reduce the disparity between professional and parent perceptions of each other, and the professionals' awareness of the value of caregiver "expertise" can improve the interaction between parents and staff. When feasible, continuity of care by preferred staff could be offered to parents. To improve support for parents in managing their external issues, we suggest initiatives that aim to improve parent management of the medical regimen by providing parents with comprehensive information and training. Home visits can promote easier transitions between hospital and home care. Information that parents require and perceive to be relevant (eg, illness, treatment, lifestyle changes, support services, dietary advice) should be provided and readily accessible. Respite care programs could be offered to provide some relief to parents who need recuperation from managing medical and household care.
To improve parental quality of life, which could be expected to improve child outcomes, a comprehensive understanding of parent experiences and perspectives is required. Despite the current limitations of systematic review methods of qualitative studies, we have demonstrated that they can collate, analyze, and render comprehensible a wide scope of relevant information that can be useful for improving the quality of clinical care that is provided to patients and their families.
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ACKNOWLEDGMENTS |
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Ms Tong is supported by the National Health and Medical Research Council Centre for Clinical Research Excellence in Renal Medicine scholarship.
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FOOTNOTES |
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Accepted Jul 12, 2007.
Address correspondence to Allison Tong, MPH, NHMRC Centre for Clinical Research Excellence in Renal Medicine, Centre for Kidney Research, Children's Hospital at Westmead, Westmead, NSW 2145, Australia. E-mail: allisont{at}health.usyd.edu.au
The authors have indicated they have no financial relationships relevant to this article to disclose.
Ms Tong developed the protocol and search strategy and drafted the report; Ms Tong and Ms Lowe were involved in screening the searches, quality appraisal, data extraction, and data synthesis; and Drs Sainsbury and Craig critically revised the manuscript.
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PEDIATRICS (ISSN 1098-4275). ©2008 by the American Academy of Pediatrics
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