Search Strategy: Different databases that were mainly searched are the Google scholar, Cochrane, cinhal, wiley online library, Pubmed and others. The key words were end of life care , barriers perspectives of family members, demands of family members, and others.
Gaps in Reviewed Literature: although the summaries were reviewed it was found that the exact activities that should be done by healthcare staffs to satisfy the parents of dying children, to overcome the barriers or to help the old people were not mentioned by any authors.
Primary research paper: End of life care in nursing homes: Translating focus group findings into action – A Qualitative Analysis
Citation: Bükki, J., Neuhaus, P. M., & Paal, P. (2016). End of life care in nursing homes: Translating focus group findings into action. Geriatric Nursing, 37(6), 440-445.
Funding Source: Funding was provided from City of Munich from the Social Service Department
Conflict of Interest: No conflict of interest was found
Aims: Aim of the study was to explore the different types of views, concerns and attitudes among different staffs. It also aimed to embark at a process which had a motive for facilitations of end of life care on institutional level.
Population: the director of a three hundred bed nursing homes requested researchers to find out the reason of high number of high rate of hospital transfer. All staff members having connections with patients were taken into considerations
Interest: the main interest was to study the exploration of attitudes, needs as well as different concerns of the healthcare staffs in end of life care.
Methodology: open end questionnaires were prepared for conducting interviews by the researchers. Grounded theory was followed.
Methods: Depending upon literature review, researchers set up important topics for discussions and involved nurse assistants, managers and primary physicians. Discussions were taped and transcribed.
Analysis: After preparation of the full length transcripts, researchers applied thematic content analysis to extract data. Meanings of the contents of the transcripts were identified and then paraphrasing of the codes was done. Codes were converted in categories which were named after the original wording of the transcripts. In every stage codes were assessed and reassessed. Summarization of the findings was done.
Results: Mainly four important factors were noted which varied among different groups of nurses. The main categories were found to be the main contributing factors. Conflicts between needs of dying patients and workload were expressed as one of the main concerns. Besides workload and efficacy, aims and attitudes, leadership and communication were the main factors. Shortage of resources, lack of mentors, issues in communication form nurses were mentioned Limitations: no limitation was noted although biasness may be provided.
Conclusions:
Nurses say improper leadership, understaffing, communication errors and others were barriers where facilitating factors like willingness of an individual to care for dying, providing adequate care are seen as physical integrity. Team forming was important along with the incorporation of living palliative care and hospice care. They agreed to develop the care of residents which would support professional and individual resilience. This would develop the culture of end of life in the healthcare setting
Primary research paper: Parent’s Experience of Pediatric Palliative Care and the Impact on Long Term Parental Grief. – A Quantitaive Analysis
Citation:
van der Geest, I. M., Darlington, A. S. E., Streng, I. C., Michiels, E. M., Pieters, R., & van den Heuvel-Eibrink, M. M. (2014). Parents’ experiences of pediatric palliative care and the impact on long-term parental grief. Journal of pain and symptom management, 47(6), 1043-1053.
Funding Source: no finding source found
Conflict of Interest: No conflict of interests is found here.
Aims: it is done to explore the perceptions of the parents while interacting with the health care professionals mainly in the domains of communication, parental involvement as well as continuity of care. Along with the symptoms of management during the phase of pediatric palliative care, it will also help in investigation of the influence of long term grief on parents’ mental conditions
Population: a total of 89 parents of 57 children were taken into consideration as participants. Such children were chosen who had expired within the age of 2000 to 2004. Parents were mainly asked to participate in the study so as to help the researchers about their perceptions and expectation from the healthcare professionals regarding their care for their dying children. The main aim was to understand the main contributors that results in long term grief of the parents who lost their children.
Problem: the main interest was to study about the perception of the parents about their interaction with the healthcare professional in the end of life treatment for their children with cancer. Their interest also lay in knowing about the symptom management that took place during the palliative phase.
Prognostic Features and Opinions: It is found that often communication with the healthcare sectors who are providing end of life care for their children, have a big impact on the parent;s mental condition. A parent who sees his child to be crying in pain, suffering from anxiwety and similar other adverse occurrences tends to have a long term effect on the parent making him suffer from grief.
Study Design: It is a quantitative technology that had been conducted by the researchers with a statistical analysis. The study was based on a questionnaire method and data analysis was done from the replies.
Methods: Two important sets of questionnaires were provided by the fathers and mothers. This was the Inventory of Traumatic Grief (ITG) that helped in the measurement of grief. Another one is questions which are formed from comprehensive, purposely developed questionnaires. The later questionnaires basically helped to develop a detailed outlook for patient’s experiences. Thirdly potential covariates were also selected as potential child related covariate and potential parent related covariates.
Inventory of traumatic grief was mainly applied to measure the level of grief that is experienced by different parents and were marked on the basis of the likart scale where higher ITG showed higher grief and lower ITG showed lower grief. The second measure was done to determine the concept of the parents about the healthcare professionals dedication towards their child’s symptom management both in terms of physical and psychological symptoms. Likart scale was also used to understand how the symptoms were being successfully managed by the staffs. Potential covariates helped to understand the main background of the parents long term grief.
Analysis : A statistical analysis was performed with the help of the SPSS software. Univariate analyses were used by the researchers to assess the different types of interaction with different types of healthcare staffs, as well as the different symptom managements and different covariates on the social grief score. Covariates were grief were then incorporated into the multivariate regression models, Multivariate regression model helped in the investigation of the combined effect of the univariate statistically significant care related aspects of long term relations of parental grief.. Individual regression model was run because of the multicollinearity among continuity of care, communication and parental involvement and symptoms. This helped to understand about the contributions that the parents expect from the healthcare professionals and how any adverse effects result in long term grief among parents.
Results: Parents have rated highly in parental involvement, communication and continuity of care during the phase of palliative care. Parents also reported that pain, fatigue, anxiety to be alone and anger also. It was astonishing to see that long term grief was comparatively low when the patients had higher levels of communication and continuity of care. Higher degree of long term grief were associate with the child’s dyspnoea, anxiety to be alone and also about the future when multivariate models were used that combined the interaction of with healthcare professional as well as system management showed significant aspects on long term parental grief.
Limitations: no limitations were found
Conclusions:
Parents highly rated care palliative care. Long term grief was associated with continuity of care and communication but a higher degree of long term grief was associated with the child’s physical and psychological symptoms in their child. This study has shown the significance of effective communication with the healthcare professionals and symptom management in long term levels of parental grief.. Therefore it becomes extremely important to provide the best quality end of life care for not only the benefit of dying child but also for marinating the mental pressures of the parents.
Primary Research Paper: Preferences and priorities for ongoing and end-of-life care: A qualitative study of older people with dementia resident in care homes – A Mixed Qualitative Article
Citation:
Goodman, C., Amador, S., Elmore, N., Machen, I., & Mathie, E. (2013). Preferences and priorities for ongoing and end-of-life care: A qualitative study of older people with dementia resident in care homes. International journal of nursing studies, 50(12), 1639-1647.
Funding Source: this research was funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research scheme (RP-PG- 0606-1005).
Conflict of Interest: No conflict of interest was found
Aims: This experiment was carried out to find out how old age people suffering from dementia can discuss their priorities as well as their different preferences so that they receive a better end of life care
Population: about 18 interviews were conducted. 133 old people suffering from the phases of dementia from 6 care homes were taken as participants. Interest
Interest: the main interest was to find out how older people with dementia perceive their conditions and what they feel could be better for them for their end of life care.
Methodology- a qualitative mixed study based on thematic analysis
Methods: The 18 interview were conducted with the help of a four year longitudinal mixed study that was given the name of Evidence based interventions for Dementia End of life study called the Evidem-Eol). It was conducted in two phases. The first phase was conducted for one year where 133 older people from six care homes were trued to be included. The findings which were found from the previous phase was then used to prepare context specific interventions by collaboration with care home staff, general practitioners, community nurses and others. Therefore it was seen that the interviews added the older person’s perspective to the data which was collected from four monthly reviews as well as from the interviews from healthcare professional about end of life care. The main outcome measure can be explained as the participation of the different number old people participated and they poured out their hearts about the feelings that they have about the concept of palliative acre and about how they would be able to promote better care.
Analysis: Data that was received was systemically sorted and were allocated to a number of categories. This division was done based on the different responses that were provided by the older peoples description of events as well as different experiences. During reviewing of the categories, similarities were identified and then merged together. Patterns, preoccupations and differences were closely analyzed and links were established. After identification of the key themes, they were reviewed.
Results/Findings: it was clearly found that the older people were clearly aware of the condition and thought they were looked down upon and their wishes were not considered in many cases. They said that they had to depend on others for their day t day care. There were old people who were not suffering from dementia and they stated that they seldom look upon death as a process which needs to be planned. Researches therefore suggested that the concept of advance care planning must be made clearer through awareness. It is also important that opportunities of capturing hw living with dementia, important of definite relationships and what the living in care homes man should be critically analyzed.. Therefore primarily creating a common communication space in end of life care is found to be extremely important. they often have stated that only a home feeling cannot be achieved by care but requires string emotional connections to be established. Therefore the future interventions that professionals should apply should look into the fact as preoccupations of the older people extend beyond their physical care and decision making for preferred place. Meaningful participation the old people in their interventions should be prioritized.
Limitations: as the people were old and suffering from dementia, many important messages may have been missed by them which could have been significant. Moreover the researchers did not know them personally and therefore every of their sentences were not been understood as the older people meant. The older people themselves had told that they were forgetful and therefore this could have impacted the results.
Conclusions:
It can be concluded from the article that advance care planning is believed by many to be effective for people with dementia. It is believed to reduce the incidences of long term treatments which are inappropriate. It should also involve family members in matters of decision making and provide delivery of end of life care.
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