CASP: Qualitative study
Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK
Yes.
The research aims to analyse the barriers including the difficulties experienced by the people who are caring for a relative or friend with dementia. Here the barriers include, barriers in decision making along with other obstacles of proxy decision making (Jox et al., 2012). The condition is extremely significant under UK’s legislative scenario because in the UK, if a person is devoid of the capacity to take their own medical decisions, Mental Capacity Act confers power of attorney to a closest relative to take decision on the person’s (suffering from dementia) behalf (Samsi et al., 2012).
The rational of the research lies in the fact that earlier the research was undertaken from the perspectives of health care professionals or in the domain of family’s decision in end of life care. Hence the author Livingston et al. (2010), of this paper is of the opinion that elucidation of facilitators and barriers of decision making among family members will help to generate necessary information for thr future decision making process of novice group of carers.
Yes.
The qualitative methodology undertaken in this research is focus group interview. The interview was semi structured interview with open ended questionnaire. According to Jamshed (2014), the most common format of data collection in qualitative research is interviewing. Semi-structured interviews are also regarded as in-depth interviews where the respondents are required to answer open-ended questions and hence can be regarded as one of the best suited data collection methods in qualitative research done in the healthcare domains. Moreover, selection of the focus groups is another important pillar of interviewing in qualitative research as it helps in the generation of accurate information on a particular domain by a definite group of population who are best aware about that topic (Jamshed, 2014). Moreover Parahoo (2014) is of the opinion that qualitative interview approach enables the interviewer to accumulate not only factual data but also helps to accumulate emotional data. For example enquiring the subject to describe the manner how he or she has felt in a particular situations helps to generate a detailed feedback and thereby unveiling much greater details about the emotions under that settings. This is extremely relevant with the scope of the research conducted by Livingston et al. (2010) as it plans to explore the emotional and informational barriers in effective decision making on behalf of dementia patients.
Yes.
In this research, Livingston et al. (2010) have clearly justified research design in the methodology along with the proper description of the process undertaken to include participants of the focus group. Here the researcher has conducted a first person interview, which helped him to get first person data. According to LoBiondo-Wood, G. and Haber (2017), getting first person data is crucial for conducting the qualitative research is mostly directed towards the analysis of the mental mind of the human race over the certain problem. The research conducted by Livingston et al. (2010) is mainly based on the barriers and facilitators of decision making from the perspective of the family members of patients of dementia. Hence, conducting research with face-to-face interviews will help the researcher to extract direct mental consequences and stress experienced by the respondents (family members of patients) during decision-making process on behalf of the patient.
Yes.
Here, Livingston et al. (2010) has utilized has used to focus group. Focus group for individual interview encompassed participants of similar experiences in order to ensure that the group remains sufficiently homogenous. The group compromised people caring for parents with dementia, spouses with dementia, people living in care home with patients suffering from young onset dementia and those with primary care settings. Thus, it is highlighted that the researcher has properly explained how the participants were selected. However, Livingston et al. (2010) is of the opinion that their carers came from a huge range of socio-demographic backgrounds and settings. Moreover, all who took part in research recognised that their close relative had dementia and for the sake of the research, they were willing to cite themselves as family carers. Thus, the authors might have missed people who did not visualize themselves as carers or whose close relative have failed to receive proper diagnosis. According to LoBiondo-Wood, G. and Haber (2017), proper definition of the focus group characteristics is crucial for qualitative research as it helps to reduce the biasness. In their research Livingston et al. (2010) has made a tabular representation of focus group characteristics and thereby making the data succinct and clear.
Yes.
The settings of the data collection were justified. Livingston et al. (2010) mentioned that carers who informed in details about the reason and for the scope of the study and those who provided consent were included in the study. However, the study does not described under what environmental setting the study was conducted that in the community settings or in the hospital. According to Parahoo (2014), discussion of the place of interview conduction is crucial for the research as providing comfortable surrounding environment facilitate the respondents to provide spontaneous answers. It is however; clear that how the data was collected on the basis of the focus group selection followed by face-to-face interview. The research has also justified that the reason for the method (interview) chosen for the research. According to Munhall (2012), the selection of the methodology undertaken for the conduction of research should be done on the basis of the aims and objectives of the research. Here Livingston et al. (2010) have selected the interview as the main mode of data collection in their qualitative research via providing clear justification, which align with the scope of the research. Moreover, they use slightly different methods for identifying and approaching the patients under the primary and secondary care during each phase and the said settings is also succinctly mentioned. The research has also discussed the saturation of the data. According to Livingston et al. (2010), the interview was continued till when the analysis indicated data saturation.
No.
Here the researcher has failed to critically examine the potential bias. According to Munhall (2012) proper clarification of the potential bias will help reduce the chances of getting bias results. Here the recruitment of the participants were undertaken in the basis of socio-demographic characteristics however, the response of each individual might vary under specific socio-demographic surroundings. For example a single child having mother/father with dementia will face more difficulty towards decision making in comparison to a wife and two sons with father suffering from dementia. Such degree of bias was not considered during the study (Krueger, 2014). The researcher have however, considered the implication so change in the methodology.
Yes.
The ethical issues have been taken into consideration during the conduction of the interview. No participants were forced to take part in the interview and detailed information about the overall interview process was given to the participants before the providing consent and initiation of interview. Moreover, no names of the participants were disclosed. This ethical consideration goes in accordance with the ethical norms stated in the Jirojwong, Johnson & Welch (2014).
Yes.
The data analysis was sufficiently rigorous as there is an in-depth of the research process. Moreover, the thematic analysis, which is done, is also clear along with the proper tabular representations of the emerged themes. The research have also used direct quotes of the respondents in order to justify the process of the generation of the themes as this method goes in sync with the methodology highlighted by Munhall (2012). According to Munhall (2012), proper usage of direct quotes and analysis and re-analysis of the interview transcript is an ideal approach for the generation for workable data of interview based qualitative research.
No.
The adequate discussion of the findings along the respondents’ validation is deficient in the research. Moreover, the researcher also failed to take necessary steps in order to eradicate the selection bias and bias resulting from the low sample size. However, the findings are discussed in relation to the original question which helped to understand the rationale of the research (Jirojwong, Johnson & Welch, 2014).
The study is extremely valuable in the present day scenario of UK and rest of the world. According to Prince et al. (2012), the rate of prevalence of dementia is gradually increasing among the older adults in middle income countries. Increase in the chronicity of dementia leads to the loos of the cognitive skills along with the reduction in the intellectual capabilities. Such that they fail to take their own decision (Strydom et al., 2013). However, the close family members who have the power of for taking decision on behalf of patients face numerous complications towards effective decision making. The results generated by Livingston et al. (2010) will be helpful for the family carers to gain proper knowledge about the effective decision making along with the coping skills that are necessary to be undertaken in order to cope up with the problems of decision making during crucial situations. Livingston et al. (2010) have highlighted at the end that legal authority is not comprehensive; the family members h ad to frame strategies to overcome barriers while gaining agreement.
Yes.
According to Bereznicki & Castelino (2013), randomized control trial (RCT) helps in providing hierarchy of evidence towards accessing the effectiveness of the interventions or treatment. Bereznicki & Castelino (2013) further opined that the interventions which effectiveness has to be determined must be explained succinctly in order to clearly discuss the rationale of the research. The trial conducted by Wang et al. (2018) is based on determining the effectivity of tai chai interventions in comparison with the aerobic exercise which is the present core standard treatment among the patients suffering from fibromyalgia. The RCT conducted by Wang et al. (2018) also plans to examine whether the effectiveness of tai chi test depends on its duration and dosage. The issue highlighted in the trial is focused because according to Clauw (2014) fibromyalgia is indeed a debilitating condition because it is characterized by widespread pain accompanied by fatigue and other memory problems and disturbances in sleep. However, the pharmacological interventions for fibromyalgia are associated with numerous side-effects hence non-pharmacological interventions are gaining importance. Now here comes the importance of this RCT conducted by Wang et al. (2018) has it aims in comparing the effectiveness of two most referred pharmacological interventions for fibromyalgia like tai chi which is mind-body practise and aerobic exercise.
Yes.
The assignment of patients to the treatment was randomised. Wang et al. (2018) conducted 52 weeks randomized single blind comparative effectiveness trial. Here the patients suffering from fibromyalgia were assigned randomly to either supervised aerobic exercise (24 weeks) or one of fur tai chi interventions (24 weeks). The main criteria for the patient selection include, age above 21 years and people fulfilling the criteria of American College of Rheumatology for preliminary diagnosis for fibromyalgia. According to Spieth et al. (2016), the principal goal of the RCT is to assure that each participants share equal probability to be assigned to one or the other form of the comparative treatment. Randomization also enables proper balancing of unknown and known confounders in order to make the treatment and the control groups as balanced as possible.
Yes.
All the patients who participated in the trial were properly recorded for at its conclusion. In the 52 week RCT single blind comparative trials, the participants of aerobic exercise were supervised twice weekly for 24 weeks. For tai chi, the supervision was done once or twice weekly of 12 or 24 weeks respectively. Thus participants of both the group were analysed for the entire tenure and thereby reducing the chances of getting bias results (Wang et al., 2018). According to Spieth et al. (2016), performance bias occurs if there is insufficient adherence to the overall study protocol either by the participants or by the investigator. Spieth et al. (2016) further opined that the adherence of the participants throughout the entire tenure of the research process would be helpful for the interpretation of RCTs. Incomplete adherence leads to the generation of detection bias that is systematically different outcome assessments among the study groups.
No.
The participants were well aware of the treatment groups and the assignment along with the high expectation of the overall treatment benefit including the placebo response might have influenced the overall assessments of effects. Wang et al. (2018) is of the opinion that they conducted a single blind trial this is because conducting a double blind trial is problematic in the absence of properly accepted and authentic sham comparison groups of complex multi-component behavioural interventions. The study conducted by Wang et al. (2018), have blinded nurse, assessors of the physical function and associated staff who are response for the follow-up assessments. They were blinded to the overall treatment allocation.
Yes.
Yes the groups were similar at the beginning of the experiment. In this experiment, the participants were recruited through an amalgamation of both enrolment and advertisements via the physicians in the Boston area. The main pain parameters which were considered for participants’ recruitment include
According to Kim et al. (2013), maintaining uniformity while recruiting the participants for both the group of the comparative study under randomised control trail helps in the eradication of the selection bias and thereby helping to obtain less biased results.
Yes.
All the five group of participants received proper information about the beneficence of the physical activity along with home practise. Both tai chi session and aerobic excercise lasted for 60 minutes. Both the groups were asked to complete their 12 week or 21 week exercise sessions along with the continuation for the entire 52 week of follow-up. Moreover, the study staffs gave month calls to both the groups of participants to encourage them for active participation in the sessions. According to Spieth et al. (2016), providing equal treatment apart from the experimental interventions is helpful in eliminating the confounding bias.
The study assessed principle clinical outcomes that is focused on the severity of the symptoms and pain in the body extracted from the previous randomized trails, review of literature and from the guidelines of the American College of Rheumatology.
The primary outcome of the study was clearly specified in a separate paragraph. In this paper, the primary outcome was the change in the total score of the revised fibromyalgia impact questionnaire (FIQR). The range was from 0 to 100 with higher range indicating higher impact of symptoms. FIQR is a well documented instrument to measuring the severity of the fibromyalgia including pain intensity, morning tiredness, physical function, fatigue, anxiety, depression and overall well-being.
The results of the primary outcome showed minimal important difference of FIQR score on the basis on the established less clinically important FIQ score.
The secondary outcome included that significant change of scores in the global assessment of patient’s anxiety, self-efficacy, depression, coping strategies, functional limitations, physical functions; performance, sleep and health related quality of life. These outcomes showed that Tai Chi mind body treatment provides identical or more improvement in symptoms in comparison to the aerobic exercise.
According to Speith et al. (2016), confidence intervals should be provided in order to cite valuable evidence towards the proper information of the accuracy of the findings. This research showed that the FIQR scores improved in all the five treatment groups. However, the combined Tai Chi groups showed statistically significant results in comparison to the aerobic exercise group in FIQR scores at 24 weeks observation. The study showed 95% confidence interval. This means that with a certainty of 95%, there is a difference in the outcomes between the Tai Chi Test and aerobic exercise.
The results can be applied to the local group of population as the selection of the group of participants as highlighted in the study does not considered any special criteria which is unnatural from the patients suffering from fibromyalgia. However, they excluded those who have already participated in tai chi or other identical types of complementary non-pharmacological interventions of pharmacological interventions within the past six months. They also excluded the people who are with the serious physical conditions arising out of fibromyalgia or patients suffering from connective tissue diseases, inflammatory arthritis or women who are pregnant or planning to conceive. This while applying this test results the selection of the patients pool must be strictly taken into consideration especially if it contains pregnant women, or people who are suffering from inflammatory complications or connective tissue disease.
Yes.
All the clinically important outcomes were stringently considered in the study. The study first highlighted the primary outcome followed by the secondary outcome. Following the primary and secondary outcome, the study analysed the proper monitoring of the adverse events along with the other safety procedures and the drug use. They did not modify the drug dose and the ordered. However, if they had study the effect of the Tai Chi test along with aerobic exercise via reducing the dosage of the drug then the research would further be successful in providing the information regarding the how these non-pharmacological interventions will be effective in designing the recovery plan of fibromyalgia in comparison to the pharmacological interventions. According to Wiffen et al. (2013), the antiepileptic drugs used for treating for neuropathic pain in fibromyalgia is associated with various side-effects and thus there lies an importance of elucidation of proper non-pharmacological interventions that will act as a substitute for the pharmacological interventions
Yes
The benefits worth the harm and cost because it helped in the evolution of the Tai Chi test as an alternative non-pharmacological intervention in treating fibromyalgia. It also helped to highlight Tai Chi test as an effective means of cure for fibromyalgia in comparison to the aerobic exercise. This is helpful because it will help to reduce the sufferings of the people who are patients of fibromyalgia.
References
Bereznicki, L., & Castelino, R. (2013). Understanding randomised controlled trials. Australian Pharmacist, 32(4), 71.
Clauw, D. J. (2014). Fibromyalgia: a clinical review. Jama, 311(15), 1547-1555.
Jamshed, S. (2014). Qualitative research method-interviewing and observation. Journal of basic and clinical pharmacy, 5(4), 87.
Jirojwong, S., Johnson, M., & Welch, A. J. (2014). Research methods in nursing and midwifery pathways to evidence based practice.
Jox, R. J., Denke, E., Hamann, J., Mendel, R., Förstl, H., & Borasio, G. D. (2012). Surrogate decision making for patients with end?stage dementia. International journal of geriatric psychiatry, 27(10), 1045-1052.
Kim, S. Y., Park, J. E., Lee, Y. J., Seo, H. J., Sheen, S. S., Hahn, S., … & Son, H. J. (2013). Testing a tool for assessing the risk of bias for nonrandomized studies showed moderate reliability and promising validity. Journal of clinical epidemiology, 66(4), 408-414.
Krueger, R. A. (2014). Focus groups: A practical guide for applied research. Sage publications.
Livingston, G., Leavey, G., Manela, M., Livingston, D., Rait, G., Sampson, E., … & Cooper, C. (2010). Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK. BMJ, 341, c4184.
LoBiondo-Wood, G., & Haber, J. (2017). Nursing Research-E-Book: Methods and Critical Appraisal for Evidence-Based Practice. Elsevier Health Sciences.
Munhall, P. (2012). Nursing research. Jones & Bartlett Learning.
Parahoo, K. (2014). Nursing research: principles, process and issues. Palgrave Macmillan.
Prince, M., Acosta, D., Ferri, C. P., Guerra, M., Huang, Y., Rodriguez, J. J. L., … & Acosta, I. (2012). Dementia incidence and mortality in middle-income countries, and associations with indicators of cognitive reserve: a 10/66 Dementia Research Group population-based cohort study. The Lancet, 380(9836), 50-58.
Samsi, K., Manthorpe, J., Nagendran, T., & Heath, H. (2012). Challenges and expectations of the Mental Capacity Act 2005: an interview?based study of community?based specialist nurses working in dementia care. Journal of clinical Nursing, 21(11?12), 1697-1705.
Spieth, P. M., Kubasch, A. S., Penzlin, A. I., Illigens, B. M. W., Barlinn, K., & Siepmann, T. (2016). Randomized controlled trials–a matter of design. Neuropsychiatric disease and treatment, 12, 1341.
Strydom, A., Chan, T., King, M., Hassiotis, A., & Livingston, G. (2013). Incidence of dementia in older adults with intellectual disabilities. Research in developmental disabilities, 34(6), 1881-1885.
Wang, C., Schmid, C. H., Fielding, R. A., Harvey, W. F., Reid, K. F., Price, L. L., … & McAlindon, T. (2018). Effect of tai chi versus aerobic exercise for fibromyalgia: comparative effectiveness randomized controlled trial. bmj, 360, k851.
Wiffen, P. J., Derry, S., Moore, R. A., Aldington, D., Cole, P., Rice, A. S., … & Kalso, E. A. (2013). Antiepileptic drugs for neuropathic pain and fibromyalgia. status and date: New, published in, (6).
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