What problems Adults with dementia face in palliative care - Essay Example

?What Problems Face Adults with Dementia in Palliative Care? Introduction Palliative care is one of the most challenging areas of adult nursing because it forces nurses and other clinical staff to deal with issues of death on a frequent basis, which can be disturbing. For this reason, it is important for a palliative care nurse to familiarize themselves with the recent literature on palliative care nursing to help utilize the most important research findings in clinical care. Using these findings in clinical practice can make the lives of these patients much better. For the same reason, it is important to be able to use an important clinical research appraisal tool which can help maximize the benefits gained from doing such research. This includes the McMaster’s Critical Review Form for Qualitative Studies, which will be used in the review below. Evidently, there are a number of ways in which a research paper can benefit the palliative care nursing staff and the patients who receive this care, and qualitative information can be extremely useful for receiving feedback on this care (Baxter & Jack, 2008). However, there are sometimes issues which need to be addressed in the research before incorporating it into current practice, which is why the McMaster’s Critical Review Form can be so useful in assessing suitability. For the purpose of this critical appraisal, three qualitative studies have been chosen to illustrate the use of the McMaster’s tool and to illustrate how it may be applied to palliative care nursing. In this review, three papers which cover the challenges that face treating those with dementia in a palliative care facility. Over 700,000 people in the United Kingdom alone suffer from dementia (Law et al, 1998), and the majority of these need some type of long-term care at some point during their life (Polit & Beck, 2004). This means that most, if not all, nurses who are involved in palliative care will come into contact with someone with a form of dementia (Polit & Beck, 2004) and thus need to be familiar with the aspects of dementia care that help make the transition to palliative care smoother. Dementia can be an extremely challenging disease to treat and to deal with on a daily basis (Schmidt & Brown, 2011), and a great deal of care needs to be taken when dealing with these patients who often suffer from confusion and anxiety (Baxter & Jack, 2008). The three papers that have been chosen to review using the McMaster’s tool are all qualitative, as this gives an interesting and more personal look into the challenges that face those working with dementia patients in palliative care (Baxter & Jack, 2008). It allows researchers to see more accurately the thoughts that are going through people’s head, and to group these into common themes (Sale et al, 2002), without the need for pressurizing scales that provide quantitative data. Challenges for professional care of advanced dementia (Chang et al, 2009) covers the challenges identified by professional health workers when caring for those with dementia in a palliative care environment. This research used small focus groups and individual interviews to gather information about the work that these people do with patients suffering from dementia. Barriers and facilitators to the receipt of palliative care for people with dementia: The views of medical and nursing staff (Ryan et al, 2012) covers UK practitioners who offer end-of-life care to those with dementia in an attempt to understand the issues that these workers may have in providing this care. Again, this research was done using a mixture of focus groups and individual interviews to gather relevant data. Finally, Dying well with dementia: qualitative examination of end-of-life care (Lawrence et al, 2011) also targets the issues that surround end-of-life palliative care for those with dementia, identifying that this type of palliative care can be quite different from that offered to those with other chronic conditions. This time, the data was carried out using interviews of both bereaved family members and clinical staff to give a fuller picture of the situation. Search Strategy The database CINAHL was chosen to find the papers to evaluate in this research. This is a strong healthcare focused database which allows a search to be conducted of the most appropriate and well-respected nursing journals. A Boolean search was conducted of the database with the following terms: “dementia” AND “palliative” OR “end-of-life” AND “qualitative” “Alzheimer’s” AND “palliative” OR “end-of-life” AND “qualitative”. These searches produced 346 and 277 results respectively. Then, out of these results, a decision was made to use three articles published after 2008 to ensure that data was up-to-date and the computer software used to complete coding was still in use. This provided 42 and 21 results respectively. Out of these, one piece of original research, one piece of original research based on literature and one piece of original research based on clinical guidelines were chosen at random. PIO Framework Each of the research papers included for evaluation within this review has an aim to improve the knowledge of certain areas of clinical care. With this in mind, it must be noted that the papers are part of what is termed evidence-based medicine, and thus have certain criteria which need to be fulfilled before using them in clinical settings. One way of establishing this is to use a framework. This framework is also useful for making clinical questions more ‘focused and relevant’ (Akobeng, 2005, p838) to the topic at hand, making the results more applicable. The PIO framework is particularly useful for evaluating the aims and objectives of qualitative research (Akobeng, 2005). Firstly, each paper will have a population or a problem which needs to be solved (Sale et al, 2002). In this case, the population is those who suffer from dementia who are in long-term palliative care, and the ‘problem’ is the challenges that face them, the staff working in such facilities and their bereaved family members. Secondly, the research must cover some form of intervention (Akobeng, 2005). In this case, the intervention is palliative care for patients with dementia. Finally, all research must have an outcome, which is the results of the qualitative research in question (Akobeng, 2005), often grouped into themes for ease (Law et al, 1998). In this case, the outcomes are the responses that come from the focus groups and/or interviews within the research and how these can be used within clinical settings to improve the life of the P, or population (Field & Morse, 1985). McMaster’s Critical Review Form As well as using the PIO framework to help guide clinical research of this type, it is also important to judge the quality of the work being assessed. There are many ways to do this, depending on the type of research being covered (Munhall, 2011). One of the best ways of assessing qualitative research is the McMaster’s Critical Review Form, which covers a number of different elements that are part of a good piece of research (Munhall, 2011). These include elements such as whether the aims and objectives for the study are clear, and whether the literature review included for information is relevant to the research questions (Polit & Beck, 2004). Using this form or the McMaster’s tool in general, allows a researcher to judge whether the results of the study are relevant and trustworthy enough to be used within clinical practice. There will always be some type of weakness involved in any study (Parse, 2001), but this does not necessarily mean that the research is useful (Field & Morse, 1985). Identifying the weaknesses in this way can allow the results to be applied to the appropriate populations (Field & Morse, 1985), or even to be used as guidance rather than actual clinical law (Law et al, 1998). To assess these three papers, the criteria outlined in the critical appraisal form will be used in order, where relevant. Chang et al (2009) This study is a piece of original research that identifies that many people who are suffering from dementia who are in long-term palliative care units often have worse standards of care than those with cancer in similar situations. This clearly states the population and the problem that the research is concerned with, and thus fits in with the focused research question outlined above. The purpose of the study, which is required to be clear for understanding (Law et al, 1998), is to identify some of the problems with palliative care in this area using the ideas of those who work in this area. The study therefore hopes to identify challenges to staff, which may help to alleviate some of the problems in this area. The study aim is stated extremely clearly at the outset, meaning that any reader can identify that this is relevant to the research question, an important factor in writing reviews (Law et al, 1998). The McMaster’s tool also requires some evaluation of the literature used as justification for the study, and how it relates to the topic in general. Although the literature review at the outset of the Chang et al (2009) study is extremely short, it does provide evidence that some of the situations that people with dementia may find themselves in may be less favourable than those in similar situations with cancerous diseases. Additionally, there is evidence that this topic has not been covered in detail using a Sydney-based population before, and using a relevant population means that results are more applicable to this area as a whole (Schmidt & Brown, 2011). It is generally recommended that results are not generalized to areas with a different population type (Schmidt & Brown, 2011), and thus this research may be useful in many areas of Australia. It is also important to judge the research design when considering a study such as this. The Chang et al (2009) study used a mixture of focus groups (each targeting a different type of clinical staff, e.g. general practitioners or palliative care specialty staff. This separation seems appropriate as each type of staff will have a different level of interaction with the dementia patient and therefore may offer up different views. This also allows for grouping of themes, which may identify problems that all groups find to be an issue in dementia care, and thus may prove to be more important for the topic. The data was collected in 1.5-2h focus groups and 1h personal interviews, which is enough to gather a significant amount of data (Schmidt & Brown, 2011). However, it may be difficult to prove that those involved in the study did not get tired or bored and begin to provide false or less accurate answers (Schmidt & Brown, 2011). Any study that relies on people replying honestly to questions has this problem of inaccuracy (Polit & Beck, 2004), and having such long interactions with participants may compound the problem. The sampling of the participants is also worth noting. In this case, the staffs for the focus groups were recruited from ten different palliative care facilities in the Sydney area. These facilities were all of various sizes and had different levels of care provided to the patient. Using this variety of clinical settings from which to draw opinions allows for the results to be generalized to many different types of palliative care facility (Field & Morse, 1985), meaning that the outcomes of this research may be useful on a large scale. However, there were only thirteen participants in the study, which is an extremely small sample size. Small sample sizes such as this are often a problem in qualitative studies, as data collection is a time-consuming and often expensive process (Law et al, 1998), and thus many similar studies will have this problem. This problem was identified in the limitations of the study, but the researchers suggested a focus on depth rather than breadth of information. Additionally, informed consent was gained from participants and there were no significant moral or legal problems identified, which is positive. Procedural rigor is another section of the McMaster’s evaluation tool. This refers to the need to provide the reader with adequate information about the procedure and how the data is collected (Law et al, 1998). In this case, not much information is provided about the structure of the interview and it cannot be judged whether there is bias involved through researcher involvement (Field & Morse, 1985). It is not explicitly stated if certain topics were to be explored above others, aside from a mention of practitioner experience (Chang et al, 2009). In this case, it could be hard to replicate the results of this study, but again this can be a challenge in almost all qualitative research and is not necessarily a downfall in a study hoping to provide deep information about the challenges in dementia care, such as this. Additionally, the data analysis itself was covered in some detail and is stated to have been done using an approved method (constant comparative method), as well as being grouped into themes. This is important in qualitative research as it can often be subjective (Moule & Goodman, 2009), and in using this Chang et al (2009) have added rigor to their proceedings. McMaster’s also identify four categories of trustworthiness: credibility, transferability, dependability and confirmability. Credibility involves an understanding of the results through the participant’s eyes, and is a measure of how believable the results are in this sense. The research in question is very credible, because the participants are those who are really involved in palliative care. Transferability is how well the results can be used in other settings (Moule & Goodman, 2009), and this research identifies itself that it cannot be used without care outside of Australia, although the results may still be useful in other Western countries with similar healthcare systems. Dependability refers to how likely the research would be to get the same results twice. This is difficult to measure in qualitative research, because people may give different responses on different days (Schmidt & Brown, 2011). However, it is likely that many staff working in palliative care hospitals would have similar feelings, judging from other research on the topic (Schmidt & Brown, 2011). Finally, confirmability refers to how likely it is that the research can be confirmed by other researchers (Law et al, 1998). In this research, there are many researchers and each played a different role, suggesting high confirmability. Overall, the paper has many strong points. Ryan et al (2012) The Ryan et al (2012) paper is a mixture of systematic review and qualitative original research involving focus groups and interviews, as in Chang et al (2009). The purpose of this study is to explore the experience that those who work with patients in palliative care (with dementia) have within the UK. This was done so that the researchers could ascertain the issues that people have when working with dementia patients in this setting , with an aim to improve what is known as ‘good practice’ in the area. The McMaster’s appraisal tool suggests that a good research paper will always identify the study purpose, and this is outlined extremely clearly at the onset of the Ryan et al (2012) paper. The research even identifies why dementia is such an important part of palliative care, because of its commonplace nature. It is also made very clear that the paper aims to find out the problems that the clinicians have when working in this context, rather than others who are around the patients (such as family members). The paper also reviews the literature on dementia patients in palliative care in some detail at the beginning. Again, the McMaster’s appraisal tool makes it very clear that this needs to be done in any research, because it allows the reader to understand the need for the research in question and the justification for carrying out the study (Law et al, 1998). Ryan et al (2012) have made it very clear during the introduction section that dementia is a common problem and that many patients receiving palliative care for this disease may not receive care of the same level as those using palliative care for another reason. It is also clear that this paper fits well into the topic chosen, as much of the findings in the literature review are similar to that in the Chang et al (2009) paper explored above. The study design for this paper was similar to the Chang et al (2009) paper, except there was a small amount of systematic review completed at the beginning to identify some common themes which may appear as part of the research. Additionally, it was suggested that qualitative-style results were required because there was a limited evidence base for the particular field that the research was interested in. The focus groups were held between two cities in the UK (one ethnically and economically diverse) and one homogenous. The focus group participants were from a range of different clinical backgrounds, with the aim of giving a wider variety of responses and identifying issues with all areas of palliative care. This seems appropriate for the study question, as there was not much literature regarding this type of care in the UK and therefore a need to discuss all areas of care. The participants were recruited by identifying them in the two cities and then approaching care workers using primary care research networks. This selection of participants may lead to bias because they were chosen by the researchers, but it does avoid self-selection bias (Baxter & Jack, 2008).Informed consent was received for all participants, making it an ethical study. The procedural rigour is not very clearly presented in the paper. For example, there is little information about what questions were asked during the focus groups, and how the researchers decided which angle to take when receiving answers. Additionally, the relationship between the researchers and the participants is unknown, and the way that they interacted throughout the study is not made clear. In this way, it may be hard to rely on the data gathered as there could be a bias within the results that cannot be judged by the reader, as information is not presented. The analysis of the data seems to have been fairly rigorous, as all three authors reviewed the data separately and then identified the themes. Additionally, a validated computer software system was used (Baxter & Jack, 2008). It is interesting that the coding for the qualitative responses was done after the results were in, as this could lead to a bias towards the conversations that were had and an ignorance of the areas that were not touched upon. Overall, the research is highly credible because the data collected was based directly on quotes and information gathered directly from the participants, who work in the care of dementia patients (McWhinney et al, 1994). The transferability of the research seems high because it used two completely different cities in the UK, meaning that the findings would apply to people who live in both kinds of contexts. Although care must be taken, it seems as though the results could be used to inform decisions made in other Western countries with similar healthcare systems (Moule & Goodman, 2009). The confirmability is also high because each author of the research looked at the information separately. Finally, the dependability is as good as can be expected for a qualitative research relying on human responses (Moule & Goodman, 2009). Overall, the conclusion drawn by the research is that providing palliative care for people with dementia poses a lot of challenges to a wide variety of clinical staff. Additionally, it suggests that development is needed to help teams find resources and use them to recognize the needs of people with dementia. This is a good conclusion to draw from the data and is supported by evidence. Lawrence et al (2011) This study has a qualitative research design based upon the clinical guidelines associated with palliative care for dementia patients. The onset of the paper outlines the information about dementia that is needed to understand the results, as well as the current clinical guidelines for those working in the area. The purpose of the study was to find out what makes good end-of-life care for dementia patients and work out how to apply this to clinical guidelines to make palliative care a more positive experience. This is strongly referred to throughout the paper, and is very clearly related to the literature review (McWhinney et al, 1994). Additionally, this study stated that it would cover the feelings of bereaved carers of those with dementia, adding an extra level of interest which is more personal than relying solely on the views of clinical staff. The study design involved interviewing people involved in palliative care of dementia patients and some bereaved carers. This is interesting because one-on-one interviews may allow for more honest opinions of the state of care in this area, whereas focus groups may be prone to bias or embarrassment at voicing views in front of others (McWhinney et al, 1994). It seems as though this may lead to more personal and appropriate qualitative results. Collection of the data was done by the means of transcripts, which is a good way of ensuring that data is not obscured by emotions that may arise during the interviews and preventing bias (Polit & Beck, 2004). It was not made clear whether there were any assumptions or bias that would be affected by the researchers participation, which means that the reader cannot incorporate this into an analysis of the paper (Baxter & Jack, 2008). The sample size for this research was 50 (27 bereaved carers and 23 healthcare individuals) which is a fairly large sample size for the study design, and leads to a higher reliability of the data. An inductive approach was used when analysing the data from the interviews. Each researcher involved also analysed the data separately, a good way of removing bias that might be associated with one or more of the interviewers. Coding strategies were used to group the results into themes, but it unfortunately was not made clear how precisely this was done, so it could be prone to bias (Polit & Beck, 2004). This leads to low auditability of the research. The data results were grouped into categories in the results section, based on the results of the study. This allows for easy interpretation of each aspect of the results in relation to end-of-life care for dementia patients and allows the reader to draw conclusions and examine how the results fit with the topic. Overall, this research had high credibility, particularly as the results incorporated two types of people that care for those with dementia. The results accurately state what those people think of the system and allows an insight for the reader into end-of-life care and the problems that it may have. This is dependent on the honesty of the respondents, but there seems to be no reason why they would adapt their results in this context (Munhall, 2011). The transferability of the results is also high, particularly as it incorporated respondents from all over the UK and also was a fairly large sample size. It is hard to judge the dependability of this study because different carers may have significantly different views, but due to the large sample size it seems likely that the results would be highly repeatable. Finally, confirmability is high because each researcher reviewed the data separately. The paper itself identifies the strengths and weaknesses that it has, and this is a sign of good research (McWhinney et al, 1994). The limitations are based around the small sample size, which (although large for a qualitative study) is still small in general terms. There were a number of conclusions drawn, including the fact that palliative care does not seem to be targeted at dementia patients, which can lead to problems with their care. This seems like a logical conclusion to make based upon the research and the results, which are portrayed very clearly throughout the results and discussion sections. Conclusions Overall, the McMaster’s critical appraisal tool is very useful for identifying which elements of the research are strong and which are weak. It is also helpful as it may not be immediately obvious which parts of good research are missing from the article in question, but pointing out all the different areas which a reliable piece of research needs to have makes it easier to identify these flaws. The three papers outlined above using this tool all had different strengths and weaknesses based on experimental design. Additionally, some of them shared weaknesses that were in part due to their nature as qualitative studies (small sample size, limited ways of collecting results). Overall, however, the papers did seem to have strong credibility, transferability, dependability and confirmability, which the McMaster’s tool recommends. References Akobeng, A.K., 2005. Principles of evidence based medicine. Archives of disease in childhood 90, 837–840. Baxter, P., Jack, S., 2008. Qualitative case study methodology: Study design and implementation for novice researchers. The Qualitative Report 13, 544–559. 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