An Appraisal of Qualitative Methods in Pain Management of People with Learning Disabilities - Coursework Example

An Appraisal of Qualitative Methods in Pain Management of People with Learning Disabilities Introduction The coming of the 21st century has seen arise in health consciousness all over the globe as quality of life and longevity have been given much importance (Thompson, Pickering & Tindall 2001, p. 24). Although the concept of health seems relative in that it varies for every individual, it is still imperative to be concerned about it in order to enjoy life fully. Thus, people have learned to value their health through exercise, proper diet and nutrition, and a healthy lifestyle. However, with the occupation in individual physical health, sometimes those that cannot fend for themselves are neglected and set aside. Consequently, there is a growing concern for people who do not have the capacity to think for themselves—much less care for themselves—and how they can, as Prime Minister Tony Blair puts it (in Department of Health 2001), “lead full and rewarding lives.” More specifically, those who have learning disabilities are propelled to the margins of society as they are deemed to be socially inept and thus, warrants litle attention and care (Blair in Department of Health 2001). This sad reality has taken the attention of organisations and governments worldwide and awareness on how people with learning disabilities—those who “function at an intellectual level that is significantly lower than the average level of people in society”--can be properly cared for as they undergo physical pain and given more opportunities to be abe to lead normal lives has begun to spread (Thomas, Woods & Kingsley 2007). In fact, their vulnerability, social exclusion, and the insensitive behavior, whether unintentional or not, that the majority have towards them have prompted the UK government to create a program that will provide “new opportunities for children and adults with learning disabilities and their families to live full and independent lives as part of their local communities” (Department of Health 2001). The author of this paper realises this need for awareness on proper care for people with learning disabilities through the management of their pain and it is on this premise that this piece will be written. The various questions about the care given to people with learning disabilities and how they can be answered will be addressed in this paper. The objective is to present the development of an evidence-based practise that can be used by caregivers, such as family members and nurses—through the exploration of the experiences of the parents and resident patients that were presented in the three articles that are deemed to be the groundwork for this paper—towards the effective pain management of children and adults with learning disabilities. The question of ‘What are caregivers’ experiences of managing pain in a person with learning disability?’ will be the focus of this paper. Furthermore, the author of this paper hopes to be able to formulate the ideas gleaned from these experiences to answer the question ‘How can this be applied to evidence-based practice?’. Summaries It is important to present a summary of the experiences discussed in the three papers, as well as the general impression that can be assembled from these experiences, in order to be able to create a cohesive understanding of how the parents and nurses were able to manage pain in people with learning disabilities. In relation to this, the summaries will also give the readers a glimpse of what each article hopes to accomplish and has accomplished through their use of qualitative methods of research. Paper 1: Parents’ experiences of pain and discomfort in people with learning disabilities by Zara Jane Clarke, Andrew R. Thompson, Linda Buchan and Helen Combes. The authors of this academic article emphasize on the importance of integrating parental experiences in successful pain assessment and management. The results of the study are directed towards their incorporation in the professional practice of managing pain in people with learning disabilities. The authors also stated that the paper is a response to the lack of substantial study on the said topic on adults, as children with learning disabilities are given more importance and attention. Furthermore, the paper presented a comprehensive view of what pain is and why pain recognition and management are especially difficult in people with learning disabilities. The study was based on the Interpretative Phenomenological Analysis of the interviews conducted on eight parents with sons or daughters having learning disabilities who also attend a health respite. Pain recognition and identification were given significance as the first steps toward an effective pain management as people with learning disabilities have troubles communicating their needs and feelings. The paper also presented the need for the use of stategies when administering the correct treatment in order to make it easier for both the parents and their offsprings, as the latter tends to make a fuss when being treated. Pain prevention was also crucial in taking care of them. The paper also explored the quality of professional service that is being given to people with learning disabilities as they tend to receive bad treatment due to their condition. In fact, the authors found that parents have “to fight to get good treatment for people with learning disabilities” (Clarke et al. 2007). The authors concluded that it is important to study how parents deal with pain in their offsprings who have learning disabilities as the skills and strategies they have developed over the years can act as a baseline in professional practice. Paper 2: Dealing with uncertainty: parental assessment of pain in their children with profound special needs by Bernie Carter, Elizabeth McArthur and Mary Cunliffe The authors of this paper explained that even if there is a substantial increase in the studies being done on pain management and assessment in children, children with profound physical difficulties/limitations and cognitive impairment are still part of a group wherein research is found to be lacking. This is where the significance and relevance of their research rest. 12 families of out-patient children from a specific children’s hospital were interviewed and treated as case units in the case study design. Guided interviews were used to attain the objective of examining the techniques and methodes used by parents of children with profound special needs to assess and manage their children’s pain. A commendable qualitataive method used by the authors is the maintenance of a fieldwork diary in which the observations and impressions of the researchers were recorded as they mingle with the families before and after the interviews were conducted. The authors also stressed that they found that families were eager to talk about their experiences, as opposed to the reservatiions of the Research Committee that families may find it distressing. It was found that pain assessment was something “instinctive” and it is also a skill that is honed through years of experience (Carter, McArthur & Cunliffe 2002). Furthermore, successful pain assessment and management rely heavily on the personal knowledge of the child in that each child expresses pain differently and reacts to treatment in his or her own way. It was found that parents also felt very isolated in their experiences with their children’s pain and thus, have become self-reliant. They expressed distrust in professional care as they felt that their children are treated differently because of their disabilities. Hence, the authors conclude that professionals need to take into consideration the parents’ expertise in pain assessment and management when dealing with children with profound physical and mental disabilities. Paper 3. Communicating with the Uncommunicative: Music Therapy with Pre-Verbal Adults by Janet Graham The author based her study on the residential unit where she actually works. Her experiences propelled her to create this thesis, thus, making it more personal yet highly enlightening. The study focused on the importance of communication and the ability to adapt to the different forms of communication that an uncommunicative presents. Furthermore, the author presented the reality that professional care may sometimes result to regression as the caregivers misinterpret the sounds patients make, like crying and shouting, and relegate them to isolation as the other patients may be distressed because of them. Graham (2004) gave importance to the fact that vocal interaction through “wordless conversations” can be made with adults who have communication disabilities. As a response to the high level of difficulty that dealing with an uncommunicative presents, Graham (2004) recommended applying the strategies used in parent-infant interactions. Hence, the study proposed Music Therapy as an innovative, yet effective way of communicating with people who have communication disabilities. Graham (2004) critically evaluated her experiences in trying to communicate via music therapy. Two patients from the residential unit, both with learning and communication disabilites, were used as case studies as they underwent a series of scheduled short sessions. The author used her expertise as a music therapist to clinically and professionally provide observations on the music therapy sessions she created. The author found that vocalisation through music therapy can be used as a valid avenue in successfully communicating with people with learning and communication disabilities. Furthermore, it is presents an opportunity for improvement. Furthermore, Graham (2004) found that it is possible to be able to distinguish between the sounds the patients make. People with learning and communication disabilities who have been in institutions or under professional care for most of their lives still have hope in improving their communication skills. Critical Evaluation The qualitative method of research entails looking at multiple realities of a phenomenon that vary with time and space (Neill 2006). Contrary to quantitative research methods that present quantifiable and mathematical data, qualitative research methods aim to produce non-numeric information that are, more often than not, based on human experience (Cauvin 2005a). Although many rely on the traditional methods that aim to quantify data, thus underestimating the value of qualitative research, it can be said that the latter heightens the human factor in any study and is consequently more appropriate for evidence-based practise (Cauvin 2005b and Drisko 2008). Hence, those who have asserted that qualitative research is unreliable have miscalculated their assumptions (Cauvin 2005b). A more apt description of qualitative research is that it is a set of methodology that is more suitable for the attainment of experience-based information that are significant in formulating new theories and ideas in the area of applied social research (Trochim 2006b and Drisko 2008). Furthermore, qualitative research presents the researcher with an avenue to deepen and expand their knowledge of a phenomenon by experiencing it—either directly or through the eyes of those who have firsthand experiences in the matter—and by attaching more details to it, in addition to the generalities that are associated to that specific phenomenon (Trochim 2006b). However, due to the question of validity that has arisen, theorists and experts have deemed it necessary to provide criteria that will attest to the trustworthiness of a qualitative study (Fenton & Mazulewicz 2008). The trustworthiness of a study’s findings refers to the conceot that they are “worth paying attention to” (Lincoln & Guba 1985, p.290 quoted in Mazulewicz 2008). Hence, an aternative criteria for judging the trustworthiness of a qualitative inquiry has been created (Trochim 2006a and Mazulewicz 2008). Transferability, credibility, confirmability and dependability are the different aspects of the criteria that will determine a qualitative study’s trustworthiness (Trochim 2006a and Fenton & Mazulewicz 2008). These criteria are congruent to the criteria for judging a quantitative study’s validity, as a response to the clamor for more traditional approaches in research (Trochim 2006a). The following section will critically analyse and evaluate the methodology for research of the three articles presented. They will be assessed in the areas of transferability, credibility, confirmability and dependability. An explanation of these four concepts will also be provided to prevent confusion and promote clarity. Credibility Credibility points to “the confidence in the truth of the data and interpretations of them” (Polit & Beck 2004). Thus, one of the best ways that this criterion can be measured is through the perception of the participants on whether the results were believable and credible based on the experiences they have imparted on the researchers, which is often caled member checking (Trochim 2006a and Speziale & Carpenter 2007). However, the author of this paper would need to have direct contact with the interviewees and the patients in order to fully assess the situation—if they think the results of the studies conducted correspond to their personal experiences. Because this criterion rests on the views of the participants, which were not wholly presented in the three articles studied in this paper, a solid conclusion cannot be arrived at, when it comes to employing this strategy. Other strategies that can be used are: prolonged engagement, persistent observation, triangulation and peer debriefing (Brown 2005). The four strategies mentioned will then be undertaken by the author of this paper, based mostly on the definitions of the approaches as presented by James Dean Brown (2005) and Denise F. Polit and Cheryl Tatano Beck (2004) in order to more specifically review the credibility of each article. Prolonged Engagement. Paper 1’s findings failed to devote sufficient time in interviewing the participants in that as little as 20 minutes were spent on a participant. The author of this paper finds this time insufficient in being able to gather the data that they need. Paper 2 invested sufficient time in conducting the research as 45-75 minutes were allotted for the taped interviews and additional 90-180 minutes were spent mingling with the family. Paper 3, on the other hand, only stated that 30-40 minutes were spent weekly on the researcher’s sessions with the participants—no period was specified as to how long the weekly sessions lasted. Persistent Observation. Paper 1 did not use persistent observation as the researchers just interviewed each participant once and for a very short time only. Aside from the taped interviews, paper 1 was also based on the persistent observation of the researchers as they spent time with the families and recorded their impressions in a fieldwork diary. Paper 3’s findings remain inconclusive as the author did not specify the period of time spent on the research—although it seemed to be substantial. Triangulation. Paper 1 failed to use source, investigator and location triangulation as all the participants were parents; only one of the authors was engaged in the collection of data; and it only used one location where all the participants come from, respectively. Paper 2 only relied on parents/foster parents’ experiences; the study only mentioned “a/the researcher” in the data collection; and the participants were all parents of patients from a children’s hospital ward. Paper 3 only analyzed 2 case studies; there was only one author/researcher; and both participants came from the same residential unit. Peer Debriefing. Paper 1 used peer debriefing in presenting the study conducted to health professionals in the authors’ organisation and to a conference about pain in people with learning disabilities. Paper 2 gained the approval of an ethics committee. Paper 3 did not specify an external body to which the study was presented for approval. All three papers were published in peer-reviewed academic journals. Credibility Summary Strategy Paper 1 Paper 2 Paper 3 Prolonged Engagement   Inc. Persistent Observation   Inc. Triangulation    Peer Debriefing    Fail Pass Fail Dependability The dependability of qualitative findings lies on “the stability of data over time and over conditions (Polit & Beck 2004). Strategies that can be used to increase dependability are overlapping methods, stepwise replications, and/or inquiry audits (Brown 2005). Paper 2 was the only one who used overlapping methods in that in-depth observation was used in addition to case interviews. Only paper 3 used stepwise replications as the author/researcher conducted sessions at times of distress and calmness. None of the papers used an oustide auditor to validate the data collected and their findings. However, in paper 1, the second author acted as the auditor. Confirmability Confirmability depends on the full disclosure of “the data upon which all the interpretations are based” (Brown 2005). All three papers failed to include a transcript of the taped interviews and sessions, fieldwork diaries, and other collected data that can be assessed by the readers. Transferability Transferability refers to the capacity of the study to be applied to the different contexts the readers find themselves in (Brown 2005). Papers 1 and 2 can be considered as completely transferable because both were able to present information that can be applied to different contexts—both in adults and children. They can also act as useful guidelines to caregivers of people that have trouble communicating their pain. Paper 3, on the other, seemed to exhibit only partial transferability as music therapy can only be effectively done by experts in the field. However, the author stated in the end that the study showed how it can also be applied in the intuitive and spontaneous ways that we communicate to other people, especially to the uncommunicative. Relevance to Practice There are many human conditions and illnesses that perpetuate the need for extra care. People suffering from learning disabilities are one of those that require more time and attention, yet they are the ones who are found to be the most marginalised and deprived (Tuffrey-Wijne 2003). The people who ignore the needs of those with intellectual and learning disabilities are said to have committed “soul murder” as their conscious disregard indirectly kills the spirit of the person living within a disabled mind and body (Niedecken 2003). It is important to remember that “people with learning disabilities have the same rights and value as any other member of society” (Daily record 1997). Indeed, the care and attention people with learning disabilities need should be given to them—as much as they should be given to anyone else—especially those that experience physical pain and have limited ways of expressing them. When dealing with this kind of human condition, it can be said that evidence-based practise is the best method that can be used as, in this case, it delves into the experiences of caregivers and analysed through the “best available research” (Drisko2008). The three papers examined in this study created a qualitative evidence-based research that aimed to aid in the formulation of effective practises when it comes to pain management in people who have learning disabilities. This section will present a critical look on how the findings of the three papers mentioned are relevant to the practise of managing pain in people who have learning disabilities. Although there have been more than enough studies that relate learning disabilities with socio-emotional problems and what can be done to effectively address the latter, the literature on properly managing the pain that people with learning disabilities feel is still found to be lacking (Teglasi, Cohn & Meshbesher 2004). This can be seen in the fact that although there is a remarkable increase in the services offered and the people enrolled in these specialised facilities (see Appendix 2), “at least 80 per cent of people with a learning disability in the UK do not get services tailored to meet their needs” (British Institute of Learning Disabilities 2008). This is because there is a continued lack of communication and inadequate understanding of their needs (Lindsey 2002). Because they cannot effectively communicate their feelings of pain, it is very difficult to be able to properly treat them. Hence, there is a need to develop evidence-based practise that can help caregivers properly diagnose and treat patients and/or family members with learning disabilities as it is something that is very difficult to do because of “communication problems, unrecognized pain behaviours and the effects of medication” (Lewis, Bell & Gillanders 2007). The three papers analysed were able to address this need through their in-depth analysis of the varied experiences of communicating and treating pain in people with learning disabilities. Their papers are especially relevant today as there is an increased awareness of and a need for strategies on how to effectively care for them (see appendix 1 for the number of cases in the Uk per age bracket). The first two papers discussed promoted person-centred practise as, based from the eperiences of parents and caregivers, pain assessment and management can be done more effectively when the carer knows the patient’s personality and habits. They can provide better treatment and even diagnose correctly what and where the pain is because time and experience have already accorded them with personal knowledge that is crucial to understanding a person who cannot communicate properly. These two papers focused on a largely undeveloped way of improving evidence-based practise in that the primary caregivers—parents and/or other family members—should be consulted in assessing and managing pain in a person with learning disabilities. Not everything has to be based on expert medical opinions. In their own ways, these parents can be considered experts in this field as they are schooled, not through famous universities, but through experience. The third paper, on the other hand, developed on the innovative idea of professional music therapy and presented hope for the uncommunicative and their families in that it created a new avenue for the understanding of the needs and thoughts of people with learning disabilities. Thus, the studies presented here are both timely and relevant as they symbolise an active response to the problem. Conclusion It can be seen, through the discussion and analysis of the three papers presented that qualitative research is the best way to develop a more effective evidence-based practise. Experience and knowledge from observation are two of the best teachers that can guide the improvement and creation of a practise, especially in such specific cases as managing pain in people with learning disabilities. Person-centred care is what the papers promote as each individual is different and in order to provide the best assessment and treatment for people with learning disabilities, their personalities and habits must be taken into consideration. This can be done through the detailed questioning of parents and other primary caregivers and also through the application of innovative practises that is also personal and more attentive in nature. Furthermore, people who avail of these professional services should have a say in the way their loved ones who have learning disabilities are being assessed and treated as the knowledge they can impart are valuable (Thomas in Malin 1995). In short, professional care needs to become more personalised—especially with people who have trouble communicating. References British Institute of Learning Disabilities 2008, Learning Disability Coalition, [Online] Available at: http://www.bild.org.uk/01headlines.htm#Learning_Disability_Coalition [Accessed November 11, 2008] Brown, J. D. 2005, Characteristics of sound qualitative research, [Online] Available at: http://www.jalt.org/test/bro_22.htm [Accessed November 11, 2008] Carter, B., McArthur, E. & Cunliffe, M. 2002, ‘Dealing with uncertainty: parental assessment of pain in their children with profound special needs’, Journal of Advanced Nursing, vol. 38, no. 5, pp. 449–457. Cauvin, R. L. 2005a, Qualitative versus Quantitative Research, [Online] Available at: http://cauvin.blogspot.com/2005/08/qualitative-versus-quantitative.html [Accessed November 11, 2008] Cauvin, R. L. 2005b, Importance of Qualitative Research, [Online] Available at: http://cauvin.blogspot.com/2005/08/importance-of-qualitative-research.html [Accessed November 11, 2008] Clarke, Z. J. et al. 2007, ‘Parents’ experiences of pain and discomfort in people with learning disabilities’, British Journal of Learning Disabilities, vol. 36, pp. 84–90. Daily record 1997, Nursing an AMBITION; Looking after People with Special Needs Can Lead to Many Challenges at Work, July 3, p. 10. Department of Health 2001, Valuing People: A New Strategy for Learning Disability for the 21st Century, Presented to Parliament by the Secretary of State for Health by Command of Her Majesty. Drisko 2008, J. 2008, Evidence Based Practice, [Online] Available at: http://sophia.smith.edu/~jdrisko/evidence_based_practice.htm [Accessed November 11, 2008] Fenton, B. & Mazulewicz, J. 2008, Trustworthiness, [Online] Available at: http://www.omnivise.com/research/trustworthiness.htm [Accessed November 11, 2008] Graham, J. 2004, ‘Communicating with the Uncommunicative: Music Therapy with Pre-Verbal Adults’, British Journal of Learning Disabilities, vol 32, pp. 24-29. Lewis, S., Bell, D. & Gillanders, D. 2007, ‘Managing Chronic Pain in People with Learning Disabilities: A Case Study’, British Journal of Learning Disabilities, vol. 35 no. 2, pp. 93-98. Lindsey, M. 2002, ‘Comprehensive health care services for people with learning disabilities’, Advances in Psychiatric Treatment, vol. 8, pp. 138-147. Neill, J. 2006, Qualitative Research I, [Online] Available at: http://wilderdom.com/OEcourses/PROFLIT/Class6Qualitative1.htm#Data [Accessed November 11, 2008] Niedecken, D. 2003, Nameless: Understanding Learning Disability, New York, Routledge. Polit, D. F. & Beck, T. B. 2004, Nursing Research, Philadelphia, Lippincott Williams & Wilkins. Speziale, H. S. & Carpenter, D. R. 2007, Qualitative Research in Nursing, Philadelphia, Lippincott Williams & Wilkins. Teglasi, H., Cohn, A. & Meshbesher, N. 2004, ‘Temperament and Learning Disability’, Learning Disability Quarterly, vol. 27, no. 1, p. 9. Thomas, D. 1995, ‘Community care plans: starting and finishing with individuals in Malin, N. (ed.), Services for People with Learning Disabilities, New York, Routledge. Thomas, D., Woods, H. & Kingsley, J. 2007, Working with People with Learning Disabilities: Theory and Practice, London, Jessica Kingsley. Thompson, J. Pickering, S. & Tindall, B. 2001, Meeting the Health Needs of People who have a Learning Disability, Edinburgh, Balliere Tindall. Trochim, W. M. K. 2006a, Qualitative Validity, [Online] Available at: http://www.socialresearchmethods.net/kb/qualval.php [Accessed November 11, 2008] Trochim, W. M. K. 2006b, Qualitative Measures, [Online] Available at: http://www.socialresearchmethods.net/kb/qual.php [Accessed November 11, 2008] Tuffrey-Wijne, I. 2003, ‘The palliative care needs of people with intellectual disabilities: a literature review’, Palliative Medicine, vol. 17, no. 1, pp. 55-62. Appendix 1 Statistics in the UK (Department of Health 2001) Appendix B (Department of Health 2001) Read More