Background
Is the title appropriate? The title of the article ‘Improving comfort around dying in elderly people: a cluster randomised controlled trial’ around dying is appropriate as clear defines the population of interest (elderly people), the research problem (discomfort around dying) and the research methodology (randomized controlled trial) used to gain answer to the research question.
The article has a well-structured abstract as it gives good overview about the background, methods, results and conclusion o the research. By reading the abstract only, one can understand the aim and main findings of the research.
Study Type Quantitative research design has been used for the research and this is understood from the fact that quantitative assessment instrument were used to analyse research data. It helped to assess the effectiveness of Care Programme for the Last Days of Life (CAREFuL) by using quantitative tools related to comfort assessment and symptoms management,
Study Design Randomized controlled trial method was used to gain answer to the research question. In Randomized controlled trial, research participants are randomly allocated to treatment and control group to determine the effect of an intervention. Beernaert et al. (2017) randomly assigned hospitals to CAREFuL group or the standard are group.
Was this Primary or Secondary research? It is a primary research paper as the data was collected from the original study instead of relying on other evidences.
Study Objective or Aims The main aim of the study was to evaluate whether comfort and quality of care in the dying phase in elderly people can be improve by the implementation of CAREFuL or not.
Setting in which the study was conducted The study was conducted in multiple hospitals in Belgium and the selection of hospitals was guided by inclusion/exclusion criteria.
Inclusion / Exclusion Criteria The inclusion criteria for the selection of articles was that all included articles must have one geriatric ward and the medical and nursing head of the ward must provide consent for inclusion of the hospital in the study. The inclusion criteria for patient were that all must consent to the use of personal data for the study. Patient who gave consent and diet in between research were also included in the data analysis process.
How was data collected? Several quantitative questionnaire tools were used to collect data for the study. For example, the End-of-Life in Dementia–Comfort Assessment in Dying (CAD-EOLD) and the End-of-Life in Dementia–Symptom Management (SM-EOLD) was used to measure comfort around dying and symptom management by patient and family carers respectively.
Study Type
What data was collected? Data was collected related to comfort during dying phases and symptom management by nurse and family carers.
How was the data analysed? Descriptive statistics was used to describe the characteristics of the study population and learn about Chi-square test and t test was used to describe the baseline and post-intervention assessment details.
What ethical considerations are associated with the research? Ethical approval for the study was taken from the Central Ethics Committee of the Vrije Universiteit Brussel (Brussels, Belgium) and from the local ethics committees of the selected hospitals. Informed consent and details related to utilization of personal data for the study was also fulfilled during sample recruitment stage.
Sample size – How many participants were included in the research? Ten hospitals were included in the study. 118 patients were in the control group and 164 in the CAREFuL group.
Was the sample size justified? Yes, power analysis was done to quantify the estimated sample size for the study.
Key Findings/ Results Implementation of the CAREFuL program was found to improve nurse-assessed comfort level significantly. This was represented by means of quantitative figures on confidential interval and p-value.
What key points are raised in the discussion? The discussion revealed positive impact of the CAREFuL program on symptom and care needs of older patients. However, negative affect was found for patient’s satisfaction with the care.
What conclusions did the researchers make? The conclusion from the study was that careful monitoring of the intervention process is needed to ensure that family carers are also satisfied with the care provided in the dying phase.
Is the title appropriate? The title of the research is appropriate at it clearly defines the intervention or phenomenon of interest, the research population and the methodology used for research.
Is there a structured abstract? The abstract describes the background, method, results and conclusion of the research. Hence, well-structured abstract has been provided.
Study Type The study is based on qualitative research design as qualitative method has been used for data collection and data analysis.
Study Design Qualitative research by the use of phenomenology approach was used to determine the impact of The Palliative and end-of-life care Priority Setting Partnership (PeolcPSP) on symptom management, nutrition and hydration at end of life.
Was this Primary or Secondary research? The study was a primary research study where response related to symptoms, nutrition and hydration was collected from research participants.
Study Design
Study Objective or Aims The main aim of the study was to conduct a supplementary analysis of the experience of PeolcPSP of people survey respondents regarding symptoms, nutrition and hydration. Supplementary analysis favoured in-depth exploration of research issue.
Setting in which the study was conducted The study was conducted in UK and the survey monkey link was used to distribute survey questionnaire to research participant.
Inclusion / Exclusion Criteria No specific inclusion and exclusion criteria has been mentioned except the fact that respondents should reply to the PeolcPSP survey.
How was data collected? The data was collected by completing response to two questions on the Survey Monkey link. The link was downloaded into NVivo 10 and uploaded as a PDF file and paper response was typed in word document. The responses were coded in the software NVivo for data analysis.
What data was collected? The participants response were collected mainly to the following two questions:
1.What questions you have about care and support needed in the last few years of life?
2.What do you want to know about someone who is fast approaching the end of their lives?
How was the data analysed? Thematic analysis was done by searching for themes and grouping codes into different themes.
What ethical considerations are associated with the research? Ethical approval for research was not taken as it was not required for the survey. Any confidentiality issues were also avoided by removing all identifiable data from the survey responses. Informed consent for participation in the survey was taken.
Sample size – How many participants were included in the research? The total PeolcPSP was 1403 and 190 response were received for symptoms, nutrition and hydration.
Was the sample size justified? No power analysis for sample size was done.
Key Findings/ Results Five themes emerged from the study. This included pain, breathlessness, agitation, nutrition and hydration. Each area revealed respondent’s
What key points are raised in the discussion? The discussion raised topics like importance of evidence-based symptom management, end of life patients concern about the place of care and dissatisfaction with symptom management by non-specialist palliative care.
What conclusions did the researchers make? The conclusion reported about identifying uncontrolled symptoms and quality of care from participants group. It also highlighted the needs to improve patient care at end of life supported by evidencee based practice.
What are the strengths of the research? The strength of the research by Beernaert et al. (2015) is that it is the first RCT to evaluate the effectiveness of end of life care programme in a geriatric ward and show positive effect on symptom and care needs of patient.
Primary or Secondary Research
What are the limitations of the research? Some of the limitations found in the study by Beernaert et al. (2015) is the receiving very low rate regarding consent to use personal data in research. Another limitation is that characteristics of nurses and family members who assessed patients in the control and intervention group was not done. This has affected the reliability of the data. Lack of qualitative analysis of data also yielded unclear results regarding the reason for poor family satisfaction with care. Reporting bias is also evident because of low response received from nurse in the CAREFuL group.
How do the study findings inform clinical practice? The findings inform clinical practice related to symptom management of patients in end-of-life care setting. This can be said because it proves that end of life care programmes like CAREFuL significantly improve communication between the dying person and the carer. It gives implication regarding the use of structured communication framework to enhance communication with end of life patients. Hence, improving communications during the dying phase can help nurses and other palliative care staffs to improve symptom management and prevent issues like inappropriate medication use or medical errors. Wittenberg et al. (2015) also supports the fact that symptom management is a key dimension of palliative care and improving provider communication pathway can ameliorate the challenges.
Summary – Write your summary of the research (make sure to include all relevant information and write in your own words)
As delivery of end of life care is often suboptimal because of complex and multifaceted needs of dying patient, Baillie et al. (2018) aimed to assess the effectiveness of CAREFuL program on improving comfort and quality of care of people in the dying phase. Randomized controlled trial study method was used to randomly assign ten hospitals in Flemish region to CAREFuL group and control group. By the assessment of comfort level and symptom management through the CAD-EOLD and the SM-EOLD tool, significant improvement in these outcome measures were found for the intervention group. One of the strength of the study is that the CAREFuL program improved comfort around dying assessed by nurse. However, negative effect was found for carers and satisfaction with care.
By the comparison of the above outcome with other research literature, it can be said that experience of family carers may differ depending on setting where they provide palliative care. For example, Morris et al. (2015) argue that when family members provide care at home, it facilitates bond development with the dying person. This helps in better assessment of patient’s comfort level. Hence, Beernaert et al. (2015) might not have achieved positive results for family carer as the program was implemented in hospital setting. Robinson, Gott and Ingleton (2014) support the fact that home setting is preferred by family carers due to the ability to manage symptoms. Homely environment is difficult to emulate in home case setting. Hence, future research should focus on evaluating the impact of end of life care on family carers in the home environmet
Study Objective or Aims
What are the strengths of the research? The strength of the research by Baillie et al. (2018) is that by highlighting about the perception of the patients and families related to symptom management in the area of pain, breath, agitation, nutrition and hydration, the study revealed that nutrition and hydration is a major concern for patients. The evidence may help to evidence based methods that may help to manage symptoms.
What are the limitations of the research? The limitation of the research is the use of poor research methodology. No rigor has been seen in recruiting participants for the study and using inclusion and exclusion criteria. Another weakness was that as it was a qualitative research, the researcher had many scope to conduct in-depth inquiry regarding the research question. However, the data collection was restricted to only two questions.
How do the study findings inform clinical practice? The supplementary analysis informs clinical practice as it highlights different issues faced by patient and health care professional related to symptom management. The recommendation of respondents regarding conducting future research to understand nutritional needs of patient can help to conduct new research in these areas. Nurses who are about to enter palliative care can also review the response to understand level of difficulties faced during symptom management. The study highlights several gap in palliative services and reviewing these gaps may help to plan future improvement in palliative care practice.
Summary – Write your summary of the research (make sure to include all relevant information and write in your own words)
Management of symptoms during palliative care is crucial to provide quality care at the end of life. However, inappropriate management of symptoms like pain is often reported by bereaved relatives. Although prompt management of symptom is necessary, however researchers have raised concerns regarding lack of research finding related to palliative care. The study aimed to evaluated response by PeolcPSP survey as free text response helps to get detailed idea about patient or family perspective related to care. The PeolcPSP survey was used to collect information from respondents regarding questions they want to ask about care, support and treatment of people at the end of lives. The review of response from survey respondents revealed several scopes for improvement in symptom management at end of life. Some common themes coming from participant’s response includes breathing difficulties, pain, nutrition, hydration and terminal agitation. The review also showed respondents were looking for evidence based methods to control symptoms. This would help in conducting new research to understand treatment that would be most effective in managing different symptoms. This would reduce harm and improve experience of patients and families utilizing palliative care services.
From the analysis of study findings, one outcome was that bereaved carers expressed that pain is under-recognized in people who cannot verbally communicate. This is supported by Tarter et al. (2016) too as it revealed that informal caregivers experience challenges in managing pain in hospice patients with dementia. By conducting qualitative analysis of audio-recorder interview of caregivers, it was found that difficulty in communicating with patient and poor guidance from health care professional increased pain related issues for dementia patients. Another response from participants in the study was end of life patients are denied hydration and nutrients at the end of life. Bozzetti (2015) argues that fear of death from hunger and thirst is not justified for end of life patients. Hence, in those patients, where nutrition and hydration is not required at the end of life, there is a need for palliative care staffs to inform patient about the natural progression and aesthetic value of starvation and dehydration in the terminal stage (Heuberger, 2010)
References
Baillie, J., Anagnostou, D., Sivell, S., Van Godwin, J., Byrne, A., & Nelson, A. (2018). Symptom management, nutrition and hydration at end-of-life: a qualitative exploration of patients’, carers’ and health professionals’ experiences and further research questions. BMC palliative care, 17(1), 60.
Beernaert, K., Smets, T., Cohen, J., Verhofstede, R., Costantini, M., Eecloo, K., … & Deliens, L. (2017). Improving comfort around dying in elderly people: a cluster randomised controlled trial. The Lancet, 390(10090), 125-134.
Bozzetti, F. (2015). Nutrition, hydration, and patient’s preferences at the end of life. Supportive Care in Cancer, 23(6), 1487.
Heuberger, R. A. (2010). Artificial nutrition and hydration at the end of life. Journal of Nutrition for the Elderly, 29(4), 347-385.
Morris, S. M., King, C., Turner, M., & Payne, S. (2015). Family carers providing support to a person dying in the home setting: A narrative literature review. Palliative Medicine, 29(6), 487–495. https://doi.org/10.1177/0269216314565706
Robinson, J., Gott, M., & Ingleton, C. (2014). Patient and family experiences of palliative care in hospital: what do we know? An integrative review. Palliative Medicine, 28(1), 18-33.
Tarter, R., Demiris, G., Pike, K., Washington, K., & Oliver, D. P. (2016). Pain in Hospice Patients With Dementia: The Informal Caregiver Experience. American Journal of Alzheimer’s Disease and Other Dementias, 31(6), 524–529. https://doi.org/10.1177/1533317516653825
Wittenberg, E., Goldsmith, J., Ferrell, B., & Platt, C. S. (2015). Enhancing communication related to symptom management through plain language. Journal of pain and symptom management, 50(5), 707-711.
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