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NDT Plus Advance Access originally published online on March 5, 2008
NDT Plus 2008 1(2):67-79; doi:10.1093/ndtplus/sfm046
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© The Author [2008]. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved. For Permissions, please e-mail: journals.permissions@oxfordjournals.org

The impact of end-stage kidney disease (ESKD) on close persons: a literature review

Joseph Low1, Glenn Smith2, Aine Burns3 and Louise Jones1

1 Marie Curie Palliative Care Research Unit, Department of Mental Health Sciences, Royal Free & University College Medical School, London NW3 2PF
2 Division of Medicine, Imperial College London, London
3 Centre for Nephrology, The Royal Free Hampstead NHS Trust, London NW3 2QG, UK

Correspondence: Joseph Low, Marie Curie Palliative Care Research Unit, Department of Mental Health Sciences, Royal Free & University College Medical School, London NW3 2PF, UK. Tel: +44-20-7794-0500 ext 36708; Fax: +44-20-7830-2808; E-mail: j.low{at}medsch.ucl.ac.uk

Key Words: caregiving/caring • end of life care • end-stage kidney disease • review

Received for publication September 20, 2007. Accepted for publication December 13, 2007.


   Introduction
Top
 Introduction
Methodology
 Results
 Conclusion
 References
 
Kidney disease is defined as end-stage when a patient's glomerular filtration rate has fallen to <15 ml/min/ 1.73 m2 [1]. Mortality associated with end-stage kidney disease (ESKD) is high [2]. The incidence of treated ESKD is rising in the western world, with a corresponding increase in the incidence of diabetes and cardiovascular disease, especially in ethnic minority groups. Survival on dialysis has been shown to be poorer in the older age group, especially in patients with increased comorbidity and in those whose functional status at the start of dialysis is poor [3]. Whilst renal transplant rates vary between different countries [4], the liberalization in the acceptance of older people into renal replacement therapy (RRT) programmes, together with changes in population demographics and the fact that kidney transplantation is less suitable for this group of older patients, means that dialysis may be the only treatment option available for an increasing number of patients aged 65 years and over [5]. Recent health policy changes in the OECD countries [6,7] acknowledge that end of life care may be more appropriate for some of these people, and maximum conservative management programmes (where residual renal function is supported, haemoglobin levels maintained and symptoms relieved) have been introduced into many renal units, particularly in the United Kingdom [6].

The onset of ESKD and subsequent recommendation of dialysis as a treatment option involves a change in lifestyle for both patients and close persons [8]. Even before end-stage disease is reached, as renal function deteriorates, patients frequently require additional support, and it is often family members who provide this [9]. In the UK it is estimated that 9 out of 10 carers of patients with either physical or neurological disabilities will be close relatives. In particular when home haemodialysis is undertaken, family members have been involved in supporting patients [10,11]. Studies have shown that good family support is associated with successful adaptation to dialysis and compliance with dietary restrictions [12,13]. Conversely, one of the main factors associated with patients discontinuing dialysis is patients’ perception that they have become a ‘burden’ to close family members [14]. There is therefore a need for health professionals to be aware of the important contribution that close persons make to the care of renal patients, to communicate effectively with them and to provide bereavement support for this group when appropriate [15].

The literature on close persons of patients with renal disease has identified two main areas of impact. Firstly, both haemodialysis and peritoneal dialysis may have a disruptive influence on family members’ social lives [16] and the structure of the week may be geared towards dialysis sessions. Secondly, some patients become frail and lose functional independence, leaving family members to provide greater physical support. Family members may have health and social care needs of their own that need to be addressed [16,17]. Qyinan [18] reported that close persons commonly felt overwhelmed and stressed, although this review was limited to an evidence base of four articles and considered home dialysis only. Campbell [19] used findings from the general carer literature to illustrate demands of ageing partners with ESKD. In other chronic illnesses such as stroke [20] or in palliative care for cancer and mental health [21], interventions aimed at providing family members with training to support patients with their rehabilitation, or to address unmet needs as a result of the patient's illness, have been developed and evaluated. Results have been mixed. In the case of stroke, carers in the intervention group experienced less depression and anxiety and better quality of life [20], whilst in the palliative care study, no statistically significant differences were found between the intervention and control group on carers’ psychological outcomes [21]. However, before such interventions can be developed in ESKD, it is important to understand better the emotional and physical needs of close persons.

This review aims to identify all studies involving close persons caring for ESKD patients, to describe the main findings and critique the methodology. Specific attention has been paid to (a) studies exploring the impact of ESKD on close persons, in particular for those close persons where the patients are either withdrawing from dialysis or being provided with end of life care and (b) studies looking at the provision of health care for close persons.


   Methodology
Top
 Introduction
 Methodology
Results
 Conclusion
 References
 
Search strategies
A literature search for relevant articles was conducted in five databases: Medline (1950–2006), Embase (1991–2006), CINAHL (1982–2006), PsycINFO (1970–2006) and AMED (1985–2006), employing the following key words: carers, caregivers, end-stage kidney disease, end-stage renal disease, haemodialysis, peritoneal dialysis and renal replacement therapy. These keywords were used both in word search options and exploded as thesaurus terms to obtain the maximum number of articles. The abstracts for each article were read to check for inclusion into the main review, using the following criteria:

  1. Published in peer-reviewed journals.
  2. Research studies with an introduction, a methodology and results section and a conclusion.
  3. Involve close persons, defined as either a family member or the person identified by the patient as an informal carer. By an informal carer, we mean a person who provides the majority of a patient's physical and emotional care needs and who is neither a volunteer nor in the employment of statutory services.
  4. Use a sample of close persons caring for adult ESKD patients (over 18 years).
  5. Non-English language articles were considered if the English translation of the abstract met the above criteria.

Using these criteria, 334 articles were identified from the five databases (139 in Medline, 121 in Embase, 80 in CINAHL, 8 in AMED and 34 in PsycINFO). J.L. went through the abstracts of each of the 382 articles, of which 37 initially met the inclusion criteria. One was later excluded on closer inspection, as it was specifically a validation study of a fatigue severity scale. Of the remaining 36 studies, 16 exclusively looked at family members, 12 specifically at the patient-family dyad and 3 at the family-health professional dyad. Whilst the latter two types of studies did not concentrate solely on family concerns, we decided to include them in the analysis, because these findings further contribute to the limited number of studies in this field. Thirty-six studies were included in the review.

Both J.L. and G.S. first went through the remaining 36 studies independently and extracted the following information for each study: the number of carers in the study sample, the RRT population they were caring for, authors’ definition of a carer, demographic details of the sample, patients’ dialysis history, caring history, study design, outcome measures used and main findings. J.L. and G.S. then met together to discuss these findings and obtain an initial consensus before meeting with A.B. and L.J. to obtain a final consensus.


   Results
Top
 Introduction
 Methodology
 Results
Conclusion
 References
 
Initial exploration of the 36 reviewed studies
We undertook an exploration of the aims of these studies, their study design, the sample of participants and the outcome measures highlighted in the quantitative studies.

Main aims of the reviewed studies
The three main themes explored were (a) the impact of caring for a patient with ESKD on dialysis on close persons, in particular quality of life, psychological morbidity, close person responsibilities—which authors often referred to as ‘burden’ or ‘carer burden’—and their life situation; (b) the coping strategies employed by these close persons and (c) factors that influence psychological morbidity. No studies of health provision for close persons of patients with ESKD were identified.

Four studies looking at end of life issues explored the following themes for close persons: (a) their perceptions of patients’ terminal symptoms; (b) their reasons for why patients decided to stop dialysis; (c) the long-term impact of patient death following dialysis cessation and (d) their perceptions of advance directives. End of life care may be provided by the renal multi-disciplinary team alone, or it may involve referral for specialist palliative care advice. Such advice is likely to include symptom control, attention to spiritual and psychological issues for patients and, where possible, involvement of their families in decision-making.

Whilst most studies were interested in the direct impact on close persons only, one triangulated close person data with patient data.

Study designs
The majority of studies reviewed used a cross-sectional design; there was only one longitudinal study. Whilst most were quantitative (24/36), there were some qualitative studies (11/36) and one used a mixed methods approach.

Sample
The total sample was predominantly female, with mean ages ranging from 41 to 68 years (analysis possible in only 18 studies). Sample sizes also tended to be small, with a median sample of 55 participants for the quantitative and 15 participants for the qualitative studies.

Most of the sample was recruited in studies where associated patients were undergoing haemodialysis or peritoneal dialysis. Three studies also involved kidney transplant patients. Only five studies looked at close persons dealing with end of life issues or with patients withdrawing from dialysis. Many studies did not focus on close persons in their potential role as ‘informal carers’. Thirteen studies actively sought close persons who also considered themselves to be informal carers, of which eight provided full definitions of what they meant by this term.

All studies included spouses as part of their sample, of which eight specifically concentrated on this group alone. Adult children were included in seven of these studies and parents in five.

Outcome measures (quantitative studies)
A wide variety of outcome measures were used to rate health-related quality of life, anxiety, depression, coping strategies and patient disease severity. Some studies used standardized outcome measures; others used simple self-rated tools.

The most commonly used standardized measures were the Zarit Burden Interview [22] to evaluate the sense of carer responsibility (3/8), the Beck Depression Scale [23] to evaluate depression (2/5), SF-36 [24] to evaluate health-related quality of life (3/8), Jalowiec Coping Scale [25] to evaluate close persons’ use of coping strategies (3/3) and End-Stage Renal Disease Severity Index [26] to evaluate patients’ disease severity (2/4).

Country of origin
A breakdown of the country of origin for each study showed that over half originated from either the USA (11/36) or Canada (7/36), with five originating from Australia and only seven from the European Union, of which only one was conducted in the UK. The remaining six studies came from the following countries: Japan (2/36), Brazil (2/36), China (1/36) and Turkey (1/36).

Main findings
The 36 studies have shown mixed results. They have mainly explored the following areas associated with caring for an ESKD patient: the impact on close persons and their social life and the factors affecting close persons’ psychological health. There have been very few studies looking at palliative care issues and these have primarily concentrated on dealing with end of life issues rather than the provision of supportive care in the pre-terminal phase.

Family life (Tables 1 and 2)
In only one study, close persons rated their quality of life as excellent and reported few pressures resulting from their carer responsibilities [27], whilst in all others, ESKD and dialysis were shown to increase the close person's sense of responsibility and lead to a poorer quality of life when compared with age-matched controls [28]. Close persons found living with an ESKD patient on dialysis stressful [29] and experienced increased fatigue [30]. The dominating effect of caring for an ESKD patient often led close persons to neglect their own health. For those who took time to have a break from their carer responsibilities, there were health benefits [31]. Other issues that close persons reported included isolation through the loss of social activity [30–36], life restrictions [36–38], increased workload, negative economic consequences [39,40], changed relationship with the patient [30,34] and sexual problems for spouses [41].


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  		Table 1 Impact on family life (quantitative and mixed methods studies)

 


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  		Table 2 Impact on family life (qualitative studies)

 
The treatment modality may also have an impact on family members. Studies have highlighted that spouses of transplant patients were more assertive, self-sufficient and able to handle the physical, social and existential aspects of the illness better than dialysis spouses [33,42]. Despite these pressures, close persons recognized that they play a positive role in promoting patients’ well-being [11,43]. They recognized that health care professionals were important in providing support to discuss their problems [39] and would like to have more information about the care being provided to patients [44]. However, they also reported poor communication with professionals, felt that their needs were not always addressed [30,39,45] and felt themselves uneducated and poorly equipped to deal with the regimented lifestyle associated with the dialysis regimen [14].

Caring and psychological Health (Table 3)
Whilst some studies have shown that close persons display few signs of psychological distress [40,46–49], others have identified the following:

  1. A negative association between close persons’ psychological health and their sense of carer responsibility [28,46,50,51], their use of emotionally focused coping strategies (i.e. strategies that reduce the symptoms of stress without addressing the source of the stress) [33,52], the close person's age [53] and the social [40] and financial changes [40,54] imposed as a result of ESKD onset.
  2. A positive association between good mental health and the following factors: low marital strain [55,56], a lack of perceived intrusiveness of dialysis [56], the type of dialysis patients are on [57], availability of social support [40,46,49] and reduced sense of carer responsibility [46].
  3. The sense of carer responsibilities are lower if patients are independent in activities of daily living (ADL) [48], have less severe dialysis-linked complaints [41] or lower comorbidity [29,50]. This was further emphasized in studies in patients receiving home haemodialysis or awaiting transplant [33,47,48] where close persons not experiencing anxiety or depression [47] felt less troubled by their carer responsibility [48] and had a comparable quality of life to the age-matched population [33]. Further associations were found between higher levels of responsibility and other outcomes such as quality of life [27] and neuroticism [51].
  4. The use of emotionally focused coping was found to have a negative correlation with marital adjustment, but a positive correlation with the number of years on dialysis [54].
  5. Close persons were more likely to have negative feelings towards patients if they had no prior experience of the dialysis process and had a high level of involvement with the caring process whilst living in a rural environment [53].


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  		Table 3 Caring and psychological health

 
End of life and end-stage kidney disease (Table 4)
We identified five studies that explored end of life issues, but only one focused specifically on close persons. This study examined the long-term impact of death occurring on families when dialysis was discontinued. It found that most families felt that patients had a good death (defined as dying at home, pain free and with close people present) and most family members showed only low levels of distress. However, principal carers and spouses, i.e. those with potentially higher levels of caring responsibility for the patient, did report significantly higher intrusive thoughts [45].


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  		Table 4 End of life care

 
The remaining four studies focused on patient outcomes such as reasons for withdrawing from dialysis [14], the quality of death [58], the accuracy of close persons in predicting ESKD patients’ preference to present and future medical care [59] and use of advance directives (defined as a legal document, prepared in advance by patients, which specifies the course of treatment to be taken by health care providers once a patient is unable to provide informed consent due to that person's lack of capacity) [60]. These studies found that close persons thought that whilst most patients had a peaceful death, many patients were perceived to be in pain and suffering from fatigue [58]. Health care proxies supported family members in ensuring that patients’ last wishes were followed and most relatives recognized the importance of living wills, which they felt were best discussed during routine health care professional visits [60]. Close persons were poorly prepared for caring for a dying dialysis patient, and patients did not want to be a burden on their families [14]. They were also poor at assessing both patients’ current and future preferences for cardiopulmonary resuscitation or dialysis continuation [59]. No studies were identified for carers of patients with supportive care needs, e.g. those on maximum conservative management programmes.

Methodological critique
General
The main criticism of most studies included in this review is the lack of detail and analysis of the demographic information. Just over half of the studies give demographic details of close persons’ ages and gender or details of their relationship to patients (19/36). Reporting of other relevant demographic variables such as employment status (13/36), ethnicity, educational level or social class is sporadic and only seven studies report the time that close persons had spent as carers.

Whilst all studies recorded the type of dialysis received, half (18/36) had reported the length of time a patient has been on dialysis, with very few recording patients’ functional status, although carer studies in other specialities suggest that this has an impact on carers’ quality of life [61]. In total, only 18 quantitative, 9 qualitative and 1 mixed methods study gave clear details of their sample sizes.

Quantitative studies
Nineteen of the 20 quantitative studies included in the analysis used cross-sectional designs and were predominantly descriptive. Such studies are useful in exploring associations between variables but are limited as they do not allow causal relationships to be established. As only five studies provide the full details of sample recruitment, it is therefore not possible to assess response rates or how representative the sample was. The sample sizes were generally small with a median of 55 participants, and details of statistical power were reported in only one study. Finally, the diversity of the tools used to assess the different outcomes makes it difficult to do any meaningful comparison between the different studies.

Qualitative studies
We identified that most studies gave poor descriptions of their sampling methods and a lack of detail of their data analysis process. Most used opportunistic samples of family members (6/11), with five studies using purposive strategies, but only one gave specific details of their sampling method. Seven studies gave detailed descriptions consistent with their analysis plan. Two studies gave vague descriptions consistent with their plan; one gave a description of their analysis but without stating their analysis approach. One study gave no details of their analysis.

Overall, the studies were poorly written, meaning that the writing style was unclear and overly complicated. Several authors were unsure as to how to use qualitative data effectively, with the depth and richness of the qualitative data lost amongst under-analysed demographic detail, long explanations of data collection scales and poor use of supporting quotes.


   Conclusion
Top
 Introduction
 Methodology
 Results
 Conclusion
References
 
This study reviewed the current literature exploring the experience of close persons of patients with ESKD, from which several points can be made regarding the quality of past research and recommendations for the direction of future research in this area.

Firstly, studies exploring end of life issues are limited, with only four identified. Although these four studies are mostly patient-centred, they do suggest that health professionals’ routine visits are the best time for informal carers to discuss patients’ preferences about end of life care and, additionally, report little long-term distress of close persons resulting from the patients’ deaths. However, little remains known about how such end of life issues affect close persons, and we recommend future studies in this area.

Secondly, definitions of close persons were problematic since there were some subtle, but fundamental differences identified between the different groups. While the current literature supports the impression that most close persons are closely related to patients, the situations in relation to patients who were single and those with alternative family and relationship arrangements were not explored. Furthermore, not all close persons decide to take on the role of the informal carer, and the development of this role can be a gradual process as illness progresses. Although our review did not identify any differences between informal carers and family carers in the outcome measures used (we included both groups under the umbrella term of ‘close person’), differences may exist in their perceived role, with ‘informal carers’ having a more active role, whereas ‘family members’ may be perceived as being more passive. Again, this needs further investigation.

Thirdly, serious issues that need to be addressed concerning the use of methodology were identified in the literature. Most quantitative studies were exploratory and descriptive, with no intervention studies being identified. Studies had sporadic reporting of demographic details and response rates and all were cross-sectional with small sample sizes that used standardized measures. Whilst the use of standardized measures increases the robustness of the results, the findings from cross-sectional studies are limited in that they can only establish associations between variables. We recommend the use of longitudinal methods in future research that would ensure that causality between key variables could be explored in more depth. This would also enhance insight into the long-term experience of close persons. In those studies using qualitative methods, most used opportunistic samples, with poor reporting and understanding of demographic details, sampling methods, analysis and social and cultural context. Many authors used the term ‘burden’ or ‘carer burden’ without questioning how such terms may influence our understanding of the relationship between close person and patient. It was not clear whether they were prompted by close persons to use the term ‘burden’ or whether it was a term coined by the authors to describe the responsibilities of caring. Such methodological and theoretical considerations affect the confidence of applying study findings beyond the original setting.

Fourthly, half of the studies originated from either the USA (11/36) or Canada (7/36). This North American dominance makes it difficult to generalize the results of these studies outside their context, due to variations in the organization of health care provision in other countries.

Lastly, while there is emerging evidence that suggests maintaining the psychological health of close persons enables them to continue to care effectively, which in turn can benefit the mental health of patients, we failed to identify studies in our review that looked specifically at how health services supported close persons of patients with ESKD. Our review has clearly identified shortcomings in the published literature that need to be filled. Future research is therefore needed to explore the relationship between health services and close persons in order to develop practical empowering interventions.


   Acknowledgements
 
We would like to acknowledge Marie Curie Cancer Care for funding this review and Beth Downe for her administration support in completing this manuscript.

Conflict of interest statement. None declared.


   References
Top
 Introduction
 Methodology
 Results
 Conclusion
 References
 

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