Impact of peritoneal dialysis on the family life of children with chronic kidney disease: integrative literature review

Background: Living with a child with Chronic Kidney Disease (CKD) on Peritoneal Dialysis (PD) has a significant impact on the family. Aims: To identify the difficulties experienced by the parents and the strategies adopted by the nurses to minimize the impact of PD on the family life of children with CKD. Methodology: A literature review was conducted using different search engines and databases with predefined inclusion criteria and descriptors. After critical appraisal of the results, 7 articles were obtained: 5 from MEDLINE and 2 from CINHAL. Results: Changes in family daily lives are consequence of the disease. The results showed that parents, particularly the mothers, are the main caregivers of these children. They mentioned difficulties related to maintaining a steady job, financial constraints and increased medical costs. Conclusion: The changes imposed by the CKD adversely affect the family dynamics. Thus, the nurses’ interventions should focus on identifying the difficulties experienced during the adaptation process, sharing care and promoting the family’s well-being. Future studies on the nurses’ interventions with these families of children on PD are recommended.


Introduction
Chronic Kidney Disease (CKD) is a progressive loss in kidney function, and is characterized by the permanence of disability and irreversible change, with expected long periods of care.The optimal definitive treatment, kidney transplantation, involves a lengthy process, and until it is performed, the alternative lies in dialysis (Martins, França, & Kimura, 1996;Frota, Machado, Martins, Vasconcelos, & Landin, 2010).Dialysis, as a renal replacement therapy, is intended to improve the patient's quality of life.However, this treatment causes changes in the personal, family and social dynamics, thus patients and families may experience difficulties adapting to the disease and its consequences and be uncertain about the future.Technological advances have brought about a significant improvement in the treatment of CKD, but some risks increase the rates of physical morbidity and associated emotional issues, in particular due to the abrupt changes imposed by the treatment (Frota et al., 2010).Both children with CKD and their families have to deal with various medical procedures on a daily basis.The renal replacement therapy, in particular the use of PD at home, is complex and requires family members to adopt the role of main caregivers with significant impact on their well-being and quality of life (Tong, Lowe, Sainsbury, & Craig, 2008).Indeed, as according to Santos (1998), taking care of a child with CKD has a significant impact on the family's dynamics and functioning, and it is generally agreed that these children's parents experience more stress than the parents of healthy children.The family is confronted with new demands, changes and constant readjustments.However, these difficulties can be alleviated by the support of health care professionals, particularly nurses (Tong et al., 2008).These professionals should develop strategies to minimize the impact on the family, i.e. interventions facilitating the family's adaptive process to the health care needs of the child on PD and promoting their well-being.Recognizing that the family dynamics changes due to prolonged treatment and that care brings with it difficulties, an integrative literature review was conducted to answer the following research question: What are the difficulties experienced by the family in caring for the child on PD and what are the strategies used by nurses to minimize these difficulties?This review aimed to describe the state-of-the-art in this field.

Methodological Procedures of the Integrative Review
In June 2013, a systematic review of published scientific literature was performed on the search engines SciELO, B-Online and EBSCO, using the following databases: MEDLINE with Full Text, CINAHL Plus with Full Text, MedicLatina and Psychology and Behavioral Sciences Collection.The studies were selected based on the criteria in Table 1.young* OR teen* ) AND (peritoneal dialysis OR chronic kidney disease) AND (famil* OR nurs*), in the fields all indexes and regional.
The search resulted in an initial sample of 94 references to scientific studies.Of these, 11 were excluded due to repetition, 65 based on title, one on language, and seven on abstract, resulting in a final sample of 10 articles.After the full-text reading of the 10 studies, three were also excluded for not meeting the inclusion/exclusion criteria.This process of composition of the corpus was carried out jointly by three authors and, in a consensus meeting, extended to the four authors.From this process, a consensus on seven articles was reached.The selection process is represented in the form of a Diagram in Figure 1.
The following exclusion criteria were also defined: studies that did not address the impact on the family; studies relating to the technical procedures of PD; systematic literature reviews; studies with no full-text version; studies in a language other than Portuguese, Spanish or English; and studies which had not been carried out in between 2000 and 2013.The search expressions used were the following: - Table 2 shows the list of articles selected for the integrative literature review, identifying their authors, date and title.The selected articles were analysed to provide an answer to the research questions of this study.Data were extracted from the articles so as to gather information about the country and context where the study took place, the period in which it was carried out, its objectives and design, the number and type of participants, the phenomena of interest studied, the results obtained and the conclusions drawn.

Results and Interpretation
For a better structural organization of the extracted results, the qualitative studies were first analysed, followed by the quantitative studies.A description of the seven studies and the results obtained in each of them are schematically shown in the following tables.

Results
Emotional support: by the extended family, reassuring the parents that they could rely on help.Informative support: the family considered the information provided by the professionals to be scarce, Instrumental support: provision of material and operational resources and collaboration in child care by the extended family.Reinforcement support: positive statements of family members regarding the care provided and the results obtained.Institutional support: support that facilitates child care and access to resources available from hospital, religious, educational and business institutions.

Conclusions
The families of children with CKD should be included in the care plan as facilitators of the therapeutic process.The nurse should assess their knowledge to promote adaptation to disease.The identification of social support allows for a better use and strengthening of defence mechanisms.

Results
The caregivers mentioned fears about PD-related health complications (infection and peritonitis); concern about the technical procedures that they have to perform; feeling of over-responsibility and inadequate conditions for performing PD.The negative repercussions on the family and social life (need of constant presence and inability to perform other activities), increased costs/expenses and decrease or lack of financial autonomy were also mentioned.

Conclusions
PD brings about several difficulties for the family and child with CKD.The description of these difficulties should be used to assess the adherence to treatment in order to improve the users' quality of life and the well-being of those involved.

Results
Technical care were mainly provided by the parents, particularly the mothers, with support from other family members or specialized professionals.Changes in the siblings' childhood by imposition of responsibilities such as household chores, caring for the ill child and the younger siblings, with limitations in the social and school spheres, were underlined.Some of them mentioned tension at home and the need for a break.The parents reported difficulties in the provision of care, maintenance of a steady job, high health care costs and limitations in social activities for not having someone to replace them.Reference was made to disorders and periods of sleep disruption.Some mentioned adverse consequences for the relationship, while others mentioned a stronger relationship as a result of daily experiences.

Conclusions
The technical routines of child care are complex and the inherent demands lead to limitations in family life.The need for interventions to reduce the impact of the necessary techniques was underlined.

Phenomena of interest
The experience of children undergoing PD and their families and the care provided to promote health.

Context
Undefined.

Results
God was considered a source of hope to cure the disease and protect from clinical complications.In the relationship with God, the families mentioned gratitude and help to fight for the child's recovery.They considered that a lack of belief in God can cause despair.The disease brought them new values and a different way of thinking about life.They appreciated the involvement of the church with prayers for the child's recovery.

Conclusions
Religion and spirituality are sources of comfort and hope for the caregivers, making them stronger and promoting their well-being.The identification of the family's religious practices may help the nurse understand their attitudes towards the disease and therapeutic process, helping them to maintain health promotion practices.The nurse should conduct interventions to improve the quality of life, strengthen the defence mechanisms, and promote the family members' health and well-being.

Table 7 Roles assessment in families of children with chronic renal failure on peritoneal dialysis
Study code: E5 Country Brazil.

Objectives
To describe the implications of role changes in families of children with chronic renal disease on peritoneal dialysis.

Study design
Exploratory study, using a case study.
Number and type of participants 14 participants (4 families of children on peritoneal dialysis, including 4 mothers, 4 siblings, 1 grandmother, 1 uncle and 4 ill children).Duration of study 5 months.

Phenomenon of Interest
Feelings experienced by the families and their interpretations about living with a chronic patient.

Context
Hospital and clinics where the children were being followed.

Mothers
Their role is burdened and intensified by their children's disease, with consequences in their daily life and family circle.They mentioned the lack of time for self-care, the need to be constantly with the ill child and the difficulty in getting help from and dividing tasks with other family members.

Siblings
They demonstrated feelings of jealousy/envy for the care and attention given to the ill child.The intensification of the brotherly role in the responsibility for the care provided to the healthy siblings was also highlighted.

Other relatives
The need to assume the role of caregiver, quit the job or start working again for financial support were underlined.

Conclusions
The intensification of roles and adjustments between the family members was demonstrated.
Nurses should develop strategies to alleviate the family burden, with a view to improving the quality of life, strengthen the coping mechanisms and preserve the family's well-being.

Intervention
The answers were classified as satisfactory or unsatisfactory, according to the researchers' criteria.

Results
For the performance of PD, the rooms had the necessary conditions for caregivers to wash their hands.They washed them for an adequate amount of time and frequency.The quality of the PD technique was considered inadequate in 60% of patients.All odds ratios indicated positive associations between the variables low education, low income, lack of basin in the room for PD, poor hand hygiene and inadequate levels of information on the PD and the variable inadequate technical quality, although no statistically significant differences were found.

Conclusions
Results show that the studied variables do not imply an inadequate performance of the PD technique.

Table 9 Psychosocial effects on caregivers for children on chronic peritoneal dialysis
Study code: E7 Country Taiwan.

Objectives
To explore the psychological effects of peritoneal dialysis on caregivers of children in Taiwan.

Study design
Quantitative case-control study.Number and type of participants 187 caregivers.Duration of study Undefined.
Outcomes Depression and quality of life of the caregivers.

Intervention
Two instruments were used: the Taiwanese Depression Questionnaire (TDQ) to explore the presence of depression and the World Health Organization QOL BRIEF-Taiwan version to assess the caregivers' quality of life.

Results
The prevalence of depression was significantly higher in the experimental group than in the control group, with 9 caregivers in the experimental group with depression, of whom 5 were aware of their tendency toward depression.As for quality of life, the scores of the domains assessed in the WHOQOL (physical, psychological, social and environmental) were lower in the experimental group than in the control group.

Conclusions
Caring for children on PD has psychological adverse effects on their caregivers and their quality of life, thus the high likelihood of depression and the need for appropriate treatment, when necessary, should be taken into account.The importance of preventing the caregivers' fatigue/burnout was also highlighted.
Therefore, and analysing first the families' experiences reported in the selected articles, it should be highlighted that the the main caregivers of children on PD are their parents, in particular their mothers.Studies E2 and E5 highlighted that the role of the mother, as the main responsible for performing PD, is overburdened, with consequences in their daily life and the family environment.Other authors such as Simpionato (2005) and Marques et al. (2012) underlined the role of the mother as the primary caregiver and their lack of time as a result of taking care of their children.
The changes inherent to the situation of CKD in children affect the entire family circle in a negative way, as it was previously referred to by Santos (1998) and Vieira and Lima (2002).As major difficulties experienced by the caregivers, the maintenance of a steady job and the financial constraints imposed by high care costs should be underlined.The time demands for the provision of care and the lack of caregivers to replace the parents restrict the social life of many couples.Some parents mentioned adverse consequences in previous relationships, while others pointed out a stronger relationship resulting from the disease experience.However, Simpionato (2005) focused on the family imbalances, in particular the relationship of the parents, who suffer the greatest change in their role as they take on the role of caregivers.
Study E2 mentioned the parents' dissatisfaction with the need to be constantly present.These difficulties may translate into a higher prevalence of depression and lower quality of life in the parents of children on peritoneal dialysis than in the group of parents of healthy children, as was confirmed in study E7.Data from the selected studies also demonstrated the impact on the siblings.Studies E3 and E5 referred to a different childhood, since the focus of attention and the daily routines are oriented towards the ill child.The increased responsibilities in caring for the ill sibling and the other healthy ones when the parents are absent or busy were also highlighted.Simpionato (2005) combines the increased responsibility with the feelings of jealousy which were also mentioned in the analysed studies.The roles and responsibilities of the siblings intensify according to their age and the amount of time experiencing the disease situation.The limitations at the social, academic and well-being levels, as well as the experience of a distressing home environment were also described.
The studies also showed the occurrence of changes in the other family members' roles, namely their intervention as caregivers and/or as financial support.Thus, the extended family is highlighted as providing a major financial support.
As regards the performance of the PD technique, studies E5 and E6 showed that, despite the caregivers having adequate information, the PD was poorly performed.In addition to underlining the caregiver's concerns with the evolution of the child's health condition, the main difficulties were related to the risk of complications and the often limited conditions to perform the technique.Simpionato (2005) and Tong et al. (2008) also mentioned the mothers' fear to perform the technique and the feeling of guilt if it was poorly performed, which is consistent with the results of the selected studies.Study E1 showed that the family considers the information provided by the professionals to be an important, but insufficient, form of support.They also valued other forms of support such as the emotional support (mainly from the extended family), the positive reinforcement in relation to the care provided, and the support from hospital, education, political and religious institutions.After analysing the results that answer this review's second research question, we concluded that the selected studies suggest that nurses help the family reorganize the roles and adapt to the disease process, thus promoting the biological, emotional, physical and spiritual well-being of the family unity.Studies E1 and E5 complement each another by suggesting that the nurse should communicate in a clear and fluent way, and listen to the family members.The interventions should target all family members and address their experiences with the ill child and not only the implementation of the technical procedure.Study E4 points out the need for nurses to be familiar with the family's religious and spiritual practices, as a strategy for understanding their attitudes towards the disease process.Moreover, Marques et al. (2012), while conducting a study on CKD, concluded that it is essential for health professionals to study the family's experiences after the diagnosis, as well as the support provided to the family.In summary, the results of the analysed articles showed that parents, particularly the mothers, are the primary caregivers of the child on PD.The main complaints relate to the fear of complications, the uncertainty about the child's future and the lack of time for personal activities and social relationships.
Other family members with particular importance are the siblings, with most of them having increased responsibilities and feelings of jealousy due to the attention given to the ill child.
Regarding the PD technique, and despite most of the caregiver's information being correct, the performance of the dialysis technique was inadequate.
The information provided by health care professionals is valued, although considered to be insufficient.The emotional support from the family and the instrumental support from various institutions were also significant.
As for the nurses' role in minimizing the families' difficulties, the analysed studies did not explore the use of interventions in the health care practice and their outcomes, only pointing out the nurses importance in the reorganization of roles within the family, the adaptation to the disease process and the promotion of partnership in care, with a view to promoting the biological, emotional, physical and spiritual well-being of the entire family unit.

Conclusion
The review of the selected studies underlined that caring for a child with CKD on PD has significant adverse effects on the family unit, particularly on the child's main caregivers, the parents.As for the identification of the difficulties, all studies point out changes in the family's dynamics, structure and functioning.The financial, professional, social and relational limitations arising from the demands of child care were presented as some of the major difficulties experienced by these families.
The Nursing interventions are referred to as essential to facilitate the family's adaptation process to the child's needs and promote the family members' well-being.The studies also highlighted the need for nurses to intervene with these families, aiming to improve their quality of life and the effectiveness of the coping strategies, as well as promote the physical, emotional and spiritual well-being of the entire family circle.
As highlighted in three of the analysed studies, the identification of the difficulties experienced by the family of the child on PD facilitates the nurse's role in maintaining the well-being and promoting the health of the family unit.However, the analysed studies only identified suggestions for Nursing care practice.No study was found to methodologically assess the outcomes of Nursing interventions aiming at family's difficulties resulting from the therapeutic process of PD and the specific care provided to children with CKD.Therefore, we recommend that Nursing interventions be implemented in the clinical practice aimed at the specific difficulties of the relatives of children on PD which were identified in these studies, and that their effectiveness is assessed.
Figure 1.Diagram of study selection process.

Table 1
Criteria for inclusion of studies

Table 2
Identification of the Studies

Table 3 A
influência do apoio social para o fortalecimento de famílias com crianças com insuficiência renal crónica

Table 5
Families' experiences of caring for technology-dependent children: a temporal perspective