Exploring the primary family care givers perceptions of care giving for end of life care of COPD ICU patient.
The world perspective is shifting towards non-communicable diseases, with chronic conditions such as heart disease, stroke and chronic obstructive pulmonary disease (COPD) as chief causes of death globally. COPD is a chronic progressive disease of air flow obstruction which includes emphysema and chronic bronchitis. COPD is predicted as 3rd leading cause of death in 2030 according to 2008 WHO statistics. In terms of social burden of disease quantified by disability-adjusted life-years (DALYs) lost, COPD ranked as the 12th leading cause of DALYs lost worldwide in 1990, but will be the 7th leading cause of DALY lost worldwide in 2030.COPD is more common among world age people due to decreased lung function capacity. The world population above 60 years was1.7% in 2013 and will continue to grow as a reaching 21.1 per cent by 2050 (world ageing population 2013).
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COPD is one of the major 8th leading causes of death in Singapore. According to MOH 2013 census COPD causes 1.6% of deaths per 18938 populations.COPD is a treatable disease but not a curable one. So ultimately it increases the economic burden of the country by its chronicity, rate of hospital readmission and affects the quality of life & activities of daily living of the patient and family members. The total expenditure for COPD was $9.9 million per year. $ 7.2 million accounts for inpatient care cost (W.-S. Kelvinteo et.al, 2011).
For last 10 years no studies found in Singapore on family care givers perspectives on end of life care in ICU. Primary family care givers most of the time the spouse are the carer for the COPD patient The Singapore old age percentage is in increasing trend 7.3% in 2000 & 9.3 in 2011 & expected to rise up to 18.7% 2013. When a family member is dying, conversations about the end of life can be uncomfortable and difficult. Still, discussing end-of-life care is important. Patients with end-stage of diseases may suffer from distressful symptoms.The Advanced COPD patient suffer from severe distressful symptoms such a dyspnea anxiety and depression.
Palliative care of malignant disorder gained more attention when compare to non-malignant diseases (Blackler et al., 2004; Lynn, 2000; Simonds, 2004).The palliative care needs of patients with end-stage respiratory diseases are increasingly being recognized (Curtis, 2008; Lanken et al., 2008) . The COPD patient experience significant impairment of quality of life and physical and psychological needs when compare to individual with lung cancer (Core et al., 2000; Edmonds et al., 2001; Skilbeck et al., 1998; Tranmer et al, 2003).
Why family members?
When there is progression of diseases it imposes negative impacts on psychological health of Care givers (Daniela Figueiredo, 2014). Careers are more likely to suffer from anxiety and depressive symptoms providing continuous care during the advance stage of the disease and end of life care (Abebaw Mengistus Yohannes 2007). Preparation for death should include a realistic appraisal of the prospects for dying peacefully at home. (Hansen –Flaschen J .2004) Most of the patients are willing to be housebound at the end stage of life so its responsibility of family cares to provide continuous care and support them White P (2011) stated 45% were housebound, 75% had a career in end stage of COPD . despite no studies have been conducted qualitatively on family care givers perception on End of life care on COPD in Asian countries .
Review of literature:
“Palliative care in COPD” search in PUBMED extracted only 285 titles from 1991 to 2011. ( Anirban Hom Choudhuri 2012) .The absence of palliative care services highlights the need for research into appropriate models of care to address uncontrolled symptoms, information provision and end of life planning. (Jones et al 2014).
Synthesis of findings:
The literature review showed that the family care givers suffer from intense conflict, emotions such as helplessness, guilt, anger, anxiety and frustration. These suffering are due to deterioration of the health of the loved one and cumulative losses over time that the patient illeness affect the care givers the most. The key findings of each study were identified and supplemented based on a review of the full article. Then, categories were derived by grouping the key findings thematically.
Lack of support:
Most of the family care givers reported they were unaware of the facilities for COPD patient. There was no social or psychological support. If the support is received also this is inadequate or sporadic. They learnt most of the things by their experience regarding prognosis, treatment signs and symptoms, illness. They faced the financial constraint in addition too. They are expecting support from the health care professionals.
“Well, the care from Father’s doctors was extremely basic and, I felt, on the most part extremely uncaring… The doctors really had an attitude of ‘You were a smoker, you’re dying of lung disease, and what do you want us to do about it?’ The way they spoke to him, and the fact that they really weren’t concerned, and they didn’t doo very much for him; anything they did for him, I was disappointed in” – participant from Hasson et al. (2009)
Burden of care givers:
Burden of care givers are noted in all the studies. Most of the care giver said they are exhausted and need to perform multi task. They need to spend most of time in caring the patient. The involvement in social life is reduced, change of relationship with patient. Mostly they are anxious and frustrated. Sometimes care givers are helpless when they patient are suffering from breathing difficulties.
“It is very frustrating, and you know I don’t know if the government realizes how hard it is for carers..It’s a full-time job. It’s work isn’t it? It’s not something you do because you like it. I mean I care for my Dad, I love him and I want to look after him, but I also need my own time.”- participant from Philip et al. (2014)
End of life care and support of Bereavement
Mostly family career are involved end of life decision making which lead to a peaceful death and die with dignity for the patient.
“I think the situation was the way is should have been. I think if there had been any external help, it would have been a bit of an intrusion. [Father] did not want to leave the house and that was fine but also whenever he was like that and he was not feeling the best, it was just best to leave him alone” – participant from Hasson et al. (2009)
Some said the hospital policy did not allowed us to care for the patient in home during end stage of life. No adequate bereavement support for the family careers after the death. Some had counselling in later part of life.
Rewards, meaning, and coping:
However, some caregivers described their experiences as positive. Identified positive features include sense of pride, esteem, and mastery as a caregiver a sense of normalcy; being able to demonstrate love and fulfill satisfaction and sense of accomplishment ability to be with and help the patient life-enriching experiences closer relationships a sense that it is important. Some care givers felt that their loved one died with dignity and respect. They were able to provide good care and that provided them a sense of accomplishment.
The COPD has a great impact on Family care givers. All the studies stated that there is a lack of support and facilities, unmet needs. There was a lack of knowledge about the available facilities and lack of emotional support .There is a need for supportive and education regarding the palliative and end of life care. Mostly of the careers reported they are helpless when patient suffering from breathlessness and guilt of not doing enough. Caregiver’s involvement in providing care and feeling able to provide quality care, will enhance the coping among the care givers. These four studies were conducted in European countries and thus there is a lack of ethnic diversity which may have an additional impact on caregiving culturally. Many recommendations were made for further research relating to the care givers perspectives. The studies did not discuss if there were any difference in the care provided by spouse/children or by ethnicity. Thus, further research can be done to study the cultural influences on care giving of COPD patients.
- What are the experiences of Family care givers on end of life care of patient with COPD in ICU?
- What are the needs of family care givers on end of life care of patient with COPD?
- What are the barriers of caring family care givers
Details of Research Proposal:
- To explore the needs of Primary family care givers or bereaved careers on end of life care of ICU COPD patient
- To explore the perspectives of Primary family care givers or bereaved careers on end of life care of ICU COPD Patient.
End of life care:
The care provided to alleviate the symptoms of patient during the end stage of COPD.
Family care givers:
Care provided by the Family members other than the health care professionals.
Bereaved careers are one who suffered from the death family members due to COPD.
A Phenomenological Descriptive approach will be adopted to explore the perspectives of Family care givers on End of life care. Interviews will be conducted.
The study will use purposive sampling method to select the participant for the interview.
Primary Family care givers COPD patient who have died in ICU
- Participant Speak English
- Participant over 18 years of age
- Bereaved careers of COPD patient within a year.
- Bereaved careers of other diseases.
- Family care givers of other diseases
- Bereaved and Family care givers of More than one year of COPD patient
Sample size planning:
Approximately 10-15 primary bereaved careers of COPD patient until the data saturation is obtained
The DSRB approval will be obtained before data collection. The purpose of the study will be explained to the participant before informed consents are obtained. The participant will be ensured that the information collected will be kept confidential and it will be used only for research purpose.
The researcher will get access to the COPD Program coordinator and get permission to conduct a study. After Permission is granted, the COPD patient died in ICU will be identified through the register. The eligible participant will be selected who meet the inclusion criteria. Then the family members will be contacted through telephone by the researcher and if the participant is willing to participate in the research.. The research process will be first explained to the selected participants in an appropriate manner without hurting their sentiments and understanding their difficult situation’s as well. Face to face semi structured interviews will be conducted with the Family care givers. In that interview, a set of general and open ended questions would be asked. And the entire conversation will be audiotaped. Each conversation is assumed to last for 40 to 60 minutes. When the participant become too emotional, the interview will be stopped and reassured by the researcher. Again the interview will be conducted when normality is retained. After the interview, basic demographic data will be collected and the same will be kept confidential.
A pilot study will be conducted based on the interview guidelines prepared with 2-3 participants to assess the feasibility of this study.
Introduction :( 2 minutes)
Good morning .Thank you for participating in our Research. I Arunadevi graduate student from Alice Lee Center of nursing Studies, National University of Singapore. As a Part of my program I am conducting this Interview. The interviews will be carried out for 45 minutes to an hour. The Questions will be open ended questions. The answers will be audiotaped.
Objectives :(1 Minute)
- To identify the perspectives of primary Family care givers on End of Life care
Interview Questions: 45 minutes to One hour)
- How did you become a Primary care giver?
- What you understand your role as a care giver?
- What do you understand about end of life care?
- How do you experience providing care to family members at the end stage?
- What helped with the care?
- What do you felt as lacking while providing the care?
- What could be improved?
Ending session: (5 minutes)
Would you like to say anything further? Thanks for sharing your thoughts and views. It would surely help others and provide support when others are facing the same problem.
The analysis of the data is based on Colaizzi (1978) which includes various steps such as read and acquire the meaning, organize it into meaningful themes, integrate results, send it to the participant as final validating steps. The recorded interviews will be listened repetitively and transcribed to verbatim by the researcher. The initial impression and reflection will be noted in a separate note book. The themes will be emerged from the transcript. The clustering of the themes with similar context will be made .The thematic analysis will be used to analyses the data. Whenever possible the transcript will be send to the participant to know the meaning or to validate the information. Gaps will be identified as well based on the expectations of the family care givers. Then certain recommendations/suggestions will be generated for the group based on the findings, in addition to the current facilities available.
The four essential criteria highlighted by Lincoln and Guba (1985) are as follows: Credibility, Transferability, Dependability and Conï¬rmability.
Credibility refers to the confidence in the truth and interpretation of Data. After transcribing the transcription will be send to the participant when possible to validate the information. To ensure the findings are not modified by the researcher. Reflective Questioning will also be used to ensure the credibility. Transferability of the results generated in the study will be achieved through ‘thick description’, (Lincoln & Guba 1985). The study findings will be useful to all the health care professionals & family care givers of COPD patient on End of life care. Conformability and dependability rest on the consistency, objectivity and accuracy of the data findings chiefly depends on the data consistency and accuracy and (Richard & Morse 2007). Audio recording and supervisor member check in will be done for conformability and dependability.
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