Chronic conditions have been defined as “health problems that require ongoing management over a period of years or decades” and have been labelled as the biggest challenge faced by the health sector in the 21st century (WHO, 2002:11). While the economic cost of managing them is high, Suhrcke, Fahey & McKee (2008) identify some strong economic arguments that may be made in support of the need for societies to invest in their (chronic diseases) management. They identify some primary benefits such as improved health (in terms of patient’s quantity and quality of life in years), long-term cost savings from complications that are prevented, and workplace productivity experienced by patients and their employers. Management of such conditions are no longer evaluated by the rates of survival alone but, also, by the quality of life experienced by patients as a result of the therapy (Bowling, 2005)
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Chronic Kidney Disease (CKD) is becoming a global pandemic (Mahon, 2006; Chen, Scott, Mattern, Mohini & Nissenson, 2006; Clements & Ashurst, 2006). The disease causes gradual decline in kidney function (Silvestri, 2002). It has been categorised into 5 stages according to the glomerular filtration rates (Johnson & Usherwood, 2005) and the progression through these stages is influenced by several processes, mostly lifestyle-related (Riegersperger & Sunder-Plassmann, 2007). Patients with stage 5 kidney disease (end stage) must receive kidney transplant, peritoneal dialysis or haemodialysis to survive (Niu & Li, 2005). However, Wu et al. (2004) identifies that many patients undergo either haemodialysis or peritoneal dialysis because kidneys are, mostly, not available for transplant. Between these two treatment methods, haemodialysis is more common in many countries (Jablonski, 2007; Zhang et al., 2007; Martchev, 2008) although Carmichael et al. (2000) report that about 50% of dialysis patients in the United Kingdom are on some form of peritoneal dialysis.
The two common treatment modalities for kidney failure (haemodialysis and peritoneal dialysis) have the same primary purposes: to remove metabolic waste and excess fluids, and maintain fluid and electrolyte balance – the functions the kidneys have failed to perform (Martchev, 2008; Timmers et al, 2008). However, each of them places unique demands on the patient as well as the healthcare team. For instance, patients on conventional haemodialysis have to spend between three to four hours on the machine for three times in a week (Rayment & Bonner, 2007; Dunn, 1993). This, in addition to transportation to and from the haemodialysis centre or hospital, if they are not on home haemodialysis, affects their work or family life (Martchev, 2008). Likewise, patients on continuous ambulatory peritoneal dialysis (CAPD), the most common form of peritoneal dialysis, have to allow dialysate to dwell within their peritoneal cavity for an average of four hours and exchange of the dialysate is done about four times in a day (Dunn, 1993; Bowman & Martin, 1999; Gonzalez-Perez et al., 2005). Moreover, compliance to dialysis regimen is very difficult because of all the dietary and fluid restrictions and other lifestyle modification associated with it (Cleary & Drennan, 2005; Timmers et al., 2008; Martchev, 2008).
Presently, more than 23,000 adults in the UK undergo dialysis treatment as a result of kidney failure and this number is expected to increase yearly (World Kidney Day, 2009). Korle-Bu Teaching Hospital (Ghana) recorded 558 cases of chronic kidney disease between January 2006 and July 2008 in the country (All Africa, 2009) and this may represent less than 30% of the total disease burden as the hospital serves a few regions in the country.
I once encountered a 27-year old young man who had been diagnosed with kidney failure. At that point in time, my concern was the kind of life he would experience depending on dialysis for survival. Cleary and Drennan (2005) identifies that patients with kidney failure have lower quality of life than the general healthy population while Loos et al. (2003), also, identify that patients with kidney failure have poor quality of life as compared to other patients with other chronic diseases. Complications such as anaemia and fatigue may contribute to the lower quality of life in patients with kidney failure (Phillips, Davies & White, 2001). Therefore, management of kidney failure should not only be cost-effective, but should also provide acceptable quality of life for the patients (Kring & Crane, 2009). How, then, can health professionals provide an acceptable quality of life for persons diagnosed with kidney failure? Major roles played by health care personnel include educating, encouraging, and assisting patients to choose the treatment modality that is best for their unique needs (Niu & Li, 2005). It is, therefore, appropriate for nurses to know which of the two kinds of treatment modalities promises an acceptable quality of life for individual patients, and this knowledge should be supported by appropriate evidence gathered through quality research.
In the 21st century, patients’ feelings and perceptions on health care are paramount to the feelings and perceptions of the health care providers (Bowling, 2005). Therefore, studying the quality of life, as experienced by patients on a specific regimen, requires the direct, subjective assessments of the patients and not the objective assessment of the health care provider (Kring & Crane, 2009). However, quality of life lacks a unanimous definition as a concept, making interpretation and synthesis of studies on it very difficult (Cleary & Drennan, 2005; Kring & Crane, 2009). Researchers and theorists have reached a consensus on some characteristics of quality of life as a concept: it is multidimensional, temporal and subjective (Bredow, Peterson & Sandau, 2009). The multidimensional aspect of the concept comprises of the physical, psychological and social capabilities of the person (McDowell, 1996 cited by Fortin et al., 2004). It is temporal because people can change their values and perceptions to fix the changes in their perceived quality of life as circumstances change (Sprangers & Schwartz, 1999). It is subjective because, as stated earlier, patients’ perceptions and feelings on such an outcome supersede that of the health care provider. Nevertheless, Tobita and Hyde (2007) states that there are some objective measures such as age and gender that can influence the measurement of quality of life.
Different subjective tools have, therefore, been developed to measure subjective aspects of quality of life but these are of two kinds: generic and disease-specific measures (Tobita & Hyde, 2007). Generic tools measure broad aspects and can be used for several types of diseases at different locations and for different cultural groups while disease-specific tools are for specific types of diseases or patient groups (Patrick & Deyo, 1989). When the two kinds of tools are combined, different populations can be compared and sensitivity to the changes that might occur with time is enhanced (Wu et al., 2004). The generic tool that is commonly used to measure quality of life is the Medical Outcomes Study Questionnaire 36-Item Short Form Health Survey (SF-36) (Neto et al., 2000; Fortin et al., 2004; Morsch, Gonçalves & Barros, 2006). Carmichael et al. (2000) identify that three disease-specific measures have been designed for dialysis patients and these are Kidney Disease Questionnaire (KDQ), a questionnaire designed by Parfrey et al. and the Kidney Disease Quality of Life questionnaire (KDQOL).
Polaschek (2003) identifies that most of the studies that have been undertaken to explore the quality of life of patients with kidney failure have used the quantitative approach. However, he adds that a few nursing studies have used qualitative methodologies in an attempt to understand the quality of life as experienced by patients on dialysis. For example, Al-Arabi (2006) used the naturalistic enquiry method to identify how the challenges faced by patients with kidney failure influence their quality of life. Sadala and Loreçon (2006) also used a phenomenological approach to explore patients’ perspective on their dependence on haemodialysis machines for survival. Grounded theory approach has, also, been used Kaba et al. (2007) to understand patients’ experience of kidney failure and dialysis in Greece.
So far, this essay has addressed the poorer quality of life experienced by patients with chronic conditions, with special emphasis on that of patients with kidney failure. It has, also, touched on the attempts made by theorists and researchers to conceptualise and assess quality of life. Development of tools to measure subjective quality of life has created more diversity in the assessment of quality of life of patients, either by the use of quantitative or qualitative methodologies. It has been stated earlier that nurses and other health personnel assist patients in choosing the treatment modality that is best for their condition with the best available evidence. Therefore, the question for healthcare providers to answer is ‘does peritoneal dialysis, compared to haemodialysis, provide a better quality of life for patients with kidney failure? The next section would look at ways by which health care providers can use research to generate answers to the above question.
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This section would critically appraise various research methods that could be employed to answer my research question – does peritoneal dialysis, compared to haemodialysis, provide a better quality of life for patients with kidney failure? Empirical research, audit/service evaluation and systematic review of published studies are the approaches that would be considered in this essay
Qualitative and quantitative designs could be used to answer the above research question. However, steps to control bias and to ensure reliability of the findings should be considered (Polit & Cheryl, 2008). Consideration should also be given to ethical issues (Robson,……..)
Qualitative research is the best approach when questions on ‘what’, ‘how’ and ‘why’ on a phenomenon are to be answered (Green & Thorogood, 2004). Some of the research traditions that are used in qualitative studies include ethnography, phenomenology and grounded theory (Polit & Cheryl, 2008). To understand quality of life, as experienced by dialysis patients from their own perspective, phenomenological approach appears to be more appropriate. Polit and Cheryl (2008) identify that phenomenological study focuses on the meaning and importance attached to a phenomenon by those experiencing it and suggest that this approach is beneficial for studies on concepts that have been poorly defined, such as quality of life.
If phenomenological approach is used for my research question, I would interview dialysis patients on how kidney failure and dialysis have affected their quality of life, after obtaining their informed consent for the study. However, Ashworth (1996) states that researchers using descriptive phenomenological approach by Husserl should set aside all their preconceptions on the phenomenon that is being studied (bracketing). For instance, now that I know that dialysis patients have a poorer quality of life, as compared to other patients with other chronic diseases or the general healthy population, I should be able to set such an idea aside during the collection and analysis of data. But Polit and Cheryl (2008) identify that researchers using interpretive phenomenology approach by Heideggar acknowledge that bracketing is not possible in empirical studies. Nevertheless, both types of phenomenological studies require the researcher to be open to all meanings that are given to a phenomenon by those experiencing it and maintain such an attitude when analysing the data and describing the findings.
One limitation of phenomenology, however, is that small number of participants can be used for each distinctive phenomenological study, usually ten participants or less (Polit & Cheryl, 2008). Phenomenology shares other limitations of qualitative research methods. Given (2006) identifies that qualitative research generate a lot of data, even when the sample size is small. He also states that collecting and analysing data may take a long time and results may not be generalised because of the small number of participants. Therefore, even though phenomenology and other qualitative methods may offer me rich and in-depth information on dialysis patients’ perspectives on their quality of life, a qualitative design may not be suitable to answer this research question for generalisation purposes.
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