Hepatitis B is a disease caused by the hepatitis B virus (HBV), which is transmitted through percutaneous or mucosal exposure to infective blood or body fluids. It is a major problem because it can cause chronic infection, resulting in cirrhosis of the liver, liver cancer, liver failure, and even death The main aim of the study was to investigate the Awareness of hepatitis B virus among health care workers at the Federal Medical Centre Asaba, Nigeria; to assess the attitude of health care workers’ vaccination against HBV; and to assess the barrier to predictors for effective hepatitis B virus among health care workers. Two-hundred and fifteen copies of questionnaire were distributed and 161 copies were retrieved, which shown overall response rate of 74.9%. The data was analyzed using SPSS and cross-tabulation, percentage and chi-square utilized. The results revealed that health care workers have poor knowledge of hepatitis B virus; the use of protective material appeared to be influenced by the perceived risk of transmission and majority indicating that overall practices towards hepatitis B virus (HBV) prevention was good. Based on the finding, the study recommends that; there is a need to inform heath care workers (HCN) of the availability of an effecting, safe vaccine that prevent HBV. All health care facilities should have programs designed to minimize risk, including infection control programs; hepatitis B vaccine protocol should be available at each health care facility; and programs need to be implemented to identify HBV positive HCNs and transfer them for appropriate medical management for vaccination.
knowledge, attitude, practice hepatitis b virus, health care workers, Nigeria
Hepatitis B virus (HBV) infection is a major global health problem [1,2], especially in Asia, Africa, Southern Europe and Latin America [3]. About 2 billion people are infected with HBV worldwide [3], and 400 million among them are suffering from chronic HBV infection [4]. The reason may be the lack of proper health facilities; poor economic status and less public awareness about the transmission of major communicable awareness diseases. The major route of HBV transmission in sub-Saharan Africa is horizontal (that is transmission unrelated to recognize-sexual, perinatal, parenteral exposure) [5] in children under 5 years of age; however, percutaneous/parenteral transmission is also an important mode of spread [6].
Health Care Workers (HCWS) may be exposed to the risk of infection with blood-borne viruses (BBVS) such as HBV, hepatitis C virus (HCV and human immunodeficiency virus HIV) via contract with blood (and other body fluids) in the course of their work [7]. The form of exposure most likely to result in occupational BBV infection is needle stick injury (NSI). A safe and effective vaccine against HBV is available throughout world, yet many health care workers in resource-poor countries remain at risk because they are not vaccinated against hepatitis B virus [8].
The main aims of this study is to investigate the effect of HBV among health care workers in five (5) Asaba metropolis. The specific objectives are to assess the level of knowledge of health care workers about vaccination against HBV; to assess the attitude of health care workers’ vaccination against HBV and to assess the barriers to predictors for effective hepatitis B virus vaccination among health care workers at Federal Medical Centre (FMC) Asaba.
The following research questions were addressed in this study. Firstly, does the level of Knowledge about hepatitis B influence health care workers to vaccinate against HBV? Secondly, what attitudes do health care workers in Asaba have towards hepatitis B vaccination? Thirdly, to what extent is the proportion of health care workers in Asaba vaccinated against HBV? And lastly, what are the barriers to predictors for effective HBV vaccination among health care workers at FMC Asaba?
In pursuance of the objective of the study, attentions were focused on a survey on public awareness of Hepatitis B among health care workers in Federal Medical Centre, Asaba. Descriptive study conducted in Federal Medical Centre in Asaba metropolis. Randomly sampling was used for this study. The study followed a quantitative approach, and participants completed a self-administered questionnaire to access their knowledge, attitude and practice (KAP) regarding HBV.
Population and sample size
The population of this study included all qualified doctors and nurses working at Federal Medical Centre, Asaba who consented to take part in this study were included.
The sample size for the study was calculated at 80% power and a 95% confidence level at 146. This was based on the following assumption (a) at least 21% of HCWs will be vaccinated, (b) 40% of those who have good knowledge about HBV vaccination are vaccinated against HBV, and (c) 70% of those who have poor knowledge of HBV vaccination are vaccinated against HBV [9]. One hundred and sixty-one (161) randomly selected nurses and doctors from Federal Medical Centre, Asaba who consented to participate were given questionnaires.
Data collection tool
Data was collected through a questionnaire which was formulated by the researchers and divided into 4 sections.
1. Demographics: Comprised of respondents’ age, gender, job category, duration as health care worker (years) and health care site.
2. Knowledge test: Since the study population was HCWs, respondents were expected to know that one can get hepatitis B through a needle stick injury; there is an effective vaccine for hepatitis B; after vaccination for hepatitis B, a blood test is needed to confirm immunity against hepatitis B; the hepatitis B vaccine provide 100% protection for 90% of adults and children; the hepatitis B vaccine protects against HBV for at least 15 years; patients who are vaccinated against hepatitis B can still be considered as a possible source of hepatitis B; a person who has been vaccinated or recovered from a previous hepatitis B infection, can still infect others. Statements were phrased either correctly or incorrectly, and respondents had to choose one option between “true”, “false”, don’t know”.
3. Practice test: This was concerned with exposure to and or protection against hepatitis B virus. Information concerning vaccination, such as have you been vaccinated against hepatitis B virus?, if vaccinated, how many doses?, was your immunity against hepatitis B checked after vaccination?, how many times during your working lifetime have you experienced a needle stick or sharp injury involving a needle or sharp instrument that had been used on a patient?, how many times in the last year have you experienced blood or body fluids splashing in your eyes or mouth?, and do you wear protective clothing when handling blood or body fluids?
The analysis identified the level of practice of HCWs about vaccination against HBV. Respondents had to choose one of the options, namely, for vaccination: 1 dose, 2 doses or 3 doses; for immunity; checked and not checked; protected and not protected; for universal precautions: always, sometimes, never and don’t know.
4. Attitude test: Questions consisted of: hepatitis B vaccination should be compulsory for HCWs; hepatitis B vaccination is too expensive; I am scared of being vaccinated because it hurts; I am not at risk for hepatitis B because I am always careful when examining patients and taking specimens; careful when examining patients and taking specimens; I am not at risk for HBV because I am a healthy person; I don’t trust vaccinations; and vaccination is against my religion, or traditional beliefs. From these questions respondents had to choose one of the options: strongly agree, agree, don’t know, disagree and strongly disagree.
Reliability and validity of the study
The questionnaire was pretested to 10 Health care workers from an institution which was not randomly selected. This was done to check on the validity if the question that is to see if the questions were clear and gave valid information. The questionnaires were formulated in such a way that the measure accounts for all the elements of the variables, which are knowledge, attitudes and practices. This ensured content validity. Threats to external validity were prevented as random selection of health care workers was done during sampling. Health care workers were sampled from difficult health care settings. Simple random selection also allowed one to draw externally valid conclusions about the entire population based on the sample.
Bias
Errors introduced by bias were minimized by making the study sample statistically powerful (that is at 80% and 95% confidence), and then increasing the sample size further. Also the sample was randomly selected, to make the sample as representatives of the population as possible. The steps minimized errors due to the following:
- Recall Bias: This could have resulted when those who had previously been occupationally exposed to HBV (for example through a NSI) recalled facts about HBV and HBV vaccination better than those who had never been exposed.
- Volunteer Bias: A poor response rate results in volunteer bias, since volunteers may have different health behaviours than people who refuse to participate. Volunteer bias is unavoidable, since people cannot be forced to take part in a study. However, it was minimized by increasing the sample size to allow for non-response, and a statistically powerful sample size was reached.
Data analysis techniques
Analytical tools such as percentage and mean were employed in this study. Statistical Package for Social Sciences (SPSS) was utilized in the analysis of the data.
Two hundred and fifteen questionnaires are distributed as described, and one hundred and sixty-one were returned, giving an overall responses rate of 74.9%. All the respondents were from public hospital.
Background characteristic
The background profile of the respondents (Table 1) indicated that majority of the respondents were female, (70.8% [114/16]) and Nurse predominated (56.5% [91/161]). It also indicated that the majority of the respondents (57.1% [92/161]) had been employed as Health Care Workers for more than ten years.
Table 1. Background profile of respondents
S/N |
Item Statement |
Respondent |
Frequency |
Percentage |
1 |
Gender |
Male |
46 |
|
Female |
114 |
70.8 |
2 |
Job Category |
Doctor |
69 |
|
Nurse |
91 |
|
3 |
Duration as Health Care worker |
5 years or less |
44 |
|
6-10 years |
24 |
|
11-15 years |
23 |
|
16-20 years |
25 |
|
More than 20 years |
44 |
|
No answer |
1 |
|
Knowledge about vaccination against hepatitis B
The first research objective in this study was to identify the level of knowledge of Health Care Workers about vaccination against HBV. Nine items measured the number of correct responses on general knowledge questions regarding vaccination against HBV. The potential range of scores was 0-9. Poor knowledge was defined as scores of 3 or less, moderate knowledge as 4 to 6, and good knowledge as 7 to 9. The actual scores ranged from 0 to 8 with a mean score of 3.13 (SD=1.47). Overall, 66.46% (107/161) had poor knowledge, 31.68% (51/161) had moderate knowledge and 1.86% (3/161) had good knowledge (Tables 2-4).
Table 2. Distribution of knowledge of HCWs
Knowledge |
Frequency |
Percent |
Poor knowledge |
107 |
66.46 |
Moderate knowledge |
51 |
31.68 |
Good knowledge |
3 |
1.86 |
Total |
161 |
100 |
Table 3. Cross tabulation knowledge and being vaccinated
Knowledge |
Vaccination |
Against HBV |
Total |
No |
Yes |
|
Poor Knowledge’s |
30 |
77 |
107 |
Moderate Knowledge’s |
15 |
36 |
51 |
Good knowledge |
0 |
3 |
3 |
Total |
45 |
116 |
161 |
Table 4. Frequency distribution of knowledge scores
Knowledge |
Frequency |
Percent |
0 |
1 |
.6 |
1 |
17 |
10.6 |
2 |
160 |
24.8 |
3 |
49 |
30.4 |
4 |
27 |
16.8 |
5 |
14 |
8.7 |
6 |
10 |
6.2 |
7 |
2 |
1.2 |
8 |
1 |
.6 |
The distribution of answers to the knowledge questions are shown in Table 5 which showed that the vast majority of respondents knew that HBV can be contracted from a NSI, and that there is an effective vaccine to protect against HBV. However, it is also clear that the vast majority do not know just how effective the vaccine is or how long they will be protected against HBV after vaccination.
Table 5. Distribution of answers to knowledge
S/N |
Item statement |
True |
False |
Don’t know |
No (%) |
No (%) |
No (%) |
1. |
Can get hepatitis B through a needle stick injury. |
147 (91.3%) |
5 (3.1%) |
9 (5.6%) |
2. |
There is no effective vaccine for hepatitis B |
13 (8.1%) |
141 (87.6%) |
7 (4.3%) |
3. |
There is no need for a blood test |
21 (13%) |
117 (72.7%) |
23 (14.3%) |
4. |
Hepatitis B vaccine provides 100% protection for 90% adults. |
84 (52.2%) |
37 (23.0%) |
40 (24.8%) |
5. |
Hepatitis B vaccine protects against HBV for at least 15 years |
49 (30.4%) |
46 (28.6%) |
66 (41.0%) |
6. |
Vaccinated patients should not be considered as a possible source of HBV |
54 (33.5%) |
82 (50.9%) |
25 (15.5%) |
7. |
A person vaccinated or recovered from hepatitis B infect others |
67 (41.6%) |
65 (40.4%) |
29 (18.0%) |
8. |
HIV is more infections than hepatitis B virus. |
32 (19.9%) |
109 (67.7%) |
20 (12.4%) |
9. |
For protection against hepatitis B, one needs a liter of at least 10ml/U/ml |
37 (23.0%) |
23 (14.3%) |
101 (62.7%) |
Attitude of HCWS towards vaccination against HBV
The second research objective in this study was to examine the attitudes of HCWs towards vaccination against HBV. There were seven statements to assess participants’ attitude towards HBV. All the statements had 5-point scale answers ranging from +2 (strongly agree) to −2 (strongly disagree) for positive statements, and from +2 (strongly agree) for negative statements. The distribution of answers to attitude question is shown in Table 6. Table 7 shows that the majority had a positive attitude among those who vaccinated, the majority (82.8%), [176/116]) had a positive attitude towards vaccination as shown in Table 8.
Table 6. Distribution of answers to attitudes questions
Hepatitis B Vaccination |
Strongly agree |
Agree |
Do not know |
Disagree |
Strongly disagree |
Should be compulsory |
109 (67.7%) |
39 (24.2%) |
8 (5%) |
4 (2.5%) |
1 (0.6%) |
Is too expenses |
8 (5%) |
27 (16.8%) |
84 (52.2%) |
27 (16.8%) |
15 (9.3%) |
Scared of vaccination |
6 (3.7%) |
14 (8.7%) |
12 (7.45%) |
65 (40.5%) |
64 (39.8%) |
Always careful therefore don’t need it |
10 (6.2%) |
26 (16.11%) |
15 (9.3%) |
73 (45.6%) |
37 (23.1%) |
Not at risk therefore don’t need it |
3 (1.9%) |
11 (6.8%) |
19 (11.8%) |
75 (46.6%) |
53 (32.9%) |
Don not trust |
4 (25%) |
7 (4.3%) |
12 (7.5%) |
73 (45.3%) |
65 (40.4%) |
Against my religion/culture |
1 (0.6%) |
4 (25%) |
5 (3.1%) |
63 (39.1%) |
88 (54.7%) |
Source: Research Survey, 2011. |
Table 7. Distribution of attitude of HCWs
Attitude |
Frequency |
Percent |
Negative attitude |
1 |
.62 |
Neutral |
40 |
24.84 |
Positive Attitude |
120 |
74.53 |
Total |
161 |
100 |
Source: Research Survey, 2011. |
Table 8. Cross tabulation between attitude and being vaccinated
Attitude |
Vaccination |
Against HBV |
|
No |
Yes |
Negatru attitude |
0 |
1 |
Neutral |
21 |
19 |
Positive attitude |
24 |
96 |
Practices of HCWS regarding prevention of HBV
The third research objective in this study was to investigate the practice of HCWs regarding HBV prevention. The results for vaccination uptake and testing for immunity are presented in Table 9, while Table 10 shows the distribution of vaccination uptake according profession, and Figure 1 illustrates the proportions of the vaccinated who had received between 1 and 3 doses of vaccine.
Table 9. Distribution of answers to protection against hepatitis B
Vaccination and protection against hepatitis B |
Number (2) |
Have you been vaccinated against hepatitis B virus (n=161) |
Yes |
116 (72.0) |
No |
39 (24.2) |
Don’t know |
6 (3.7) |
Was your immunity against hepatitis B checked after vaccination? (n=116) |
Checked |
32 (27.6) |
Not checked |
84 (72.4) |
If checked, are you protected (n=32) |
Protected |
30 (93.75) |
Not protected |
1 (3.125%) |
Don’t know |
1 (3.125%) |
Source: Research Survey, 2011. |
Table 10. Cross tabulation of being vaccinated against hepatitis B with job category
Job category |
Vaccination |
Against HBV |
|
No or Do not know (%) |
Yes (%) |
Doctor |
14 (8.7) |
56 (34.8) |
Nurse |
31 (19.3) |
60 (37.3) |
Total |
45 (28) |
116 (72) |
Figure 1. Pie chart showing vaccine doses received
Occupational exposures
The majority of the HCWs (67.7%, [109/161]) experienced needled stick injury. Among them, over a third (37.6%, [41/81]) reported always and those who reported among them 40.7% (33/81) took PEP as show in Table 11. The chi-square test of association was used to find associations between vaccination uptake and demographic variables (Tables 12-14). Job category was the only variable that was significantly associated (X2=4.563; P=−0.049) with taking vaccination, and it was found that doctors were twice more likely to take the vaccinations as compared to nurses
Table 11. Experience of needle stick injury among HCWs (n=161)
No. of time needle stick injury |
Frequency |
Percent |
More than 10 times |
5 |
3.1 |
6 – 10 times |
17 |
10.6 |
2 – 5 times |
47 |
29.2 |
Once |
40 |
24.8 |
Never |
52 |
32.3 |
Injury reported (n=109) |
Never |
|
|
Sometimes |
|
|
Always |
|
|
PEP given (n=81) |
Yes |
33 |
40.7 |
No |
48 |
59.3 |
Source: Research Survey, 2011. |
Table 12. Cross tabulation of gender and vaccination against HBV
Gender |
Vaccination |
Against HBV |
Chi-square test |
|
Yes |
No |
|
Male |
34 |
12 |
0.065 (P=0.847) |
Female |
84 |
32 |
|
Table 13. Cross tabulation of job category and vaccination against HBV
Job category |
Vaccination |
Against HBV |
Chi-square test |
|
Yes |
No |
|
Doctor |
56 |
13 |
4.563 (P=0.049) |
Nurse |
60 |
31 |
|
Table 14. Cross tabulation of duration as HCW and vaccination against hepatitis B virus.
Duration as HCW |
Vaccination |
Against HBV |
Chi square test |
|
Yes |
No |
|
5 years or less |
34 |
10 |
|
6-10 years |
17 |
7 |
|
11-15 years |
17 |
6 |
2.998 (P=0558) |
16-20 years |
20 |
5 |
|
More than 20 years |
28 |
16 |
|
The main aim of the study is to investigate public awareness on hepatitis B virus among health workers. An overall response rate of 74.9% (161/215) was achieved in the study. This means that the results are adequately representative of the target population from which it was where the required 70% response.
Holbrook Allyson identifies response rates as a function of two different aspects of the interaction with respondents, namely contracting respondents and gaining their cooperation. There are different variables that have significance in non-response, namely, Occupation, income, number of hours worked, and knowledge of condition under survey.
Health care workers are at an increased risk of blood borne diseases. The most common form of accidental exposures is due to NSI. Exposures could also result from sharp objects such as scalpels and broken glasses, as well as from mucosal exposures after blood splash or bodily fluids [10]. A few questions on Knowledge were answered correctly by a majority of respondents. A majority of HCWs (91.3% [147/161] knew that one could get HBV through a needle stick injury, and 87.6% (141/161) knew that there is an effective vaccine to protect against HBV. This is in contrast to studies done in Iran and the UK, where 21.4% and 44% respectively of HCWs knew that HBV can be transmitted by NSI [11,12], and 38% of HCWs in Egypt not knowing how effective the vaccine is [13]. About two thirds (67.7% [109/161]) of HCWs knew that HBV was more infectious then HIV. This was similar to a study done in Dublin, Ireland, where 82% of nurses knew that HBV transmission was 100 times more ineffective than HIV.
Finally, 50.9% (82/161) knew that being vaccinated does not exclude on from being considered a possible source of hepatitis B, and 72.72 (117/161) knew that one has to be tested in order to be sure that one is protected. This finding is similar to a study done in Dublin which showed that nurses had knowledge about the hepatitis B virus infection. This is demonstrated by the fact that of the 83% of HCWs who had completed a full course of hepatitis B Immunization, 93% reported a hepatitis B antibody level on completion of the immunization; 14% knew their actual titer and 78% reported immunity. Similarly, a study done in Birmingham, demonstrated that 70% (153/218) HCWs stated that they treat every patient as if he is carrying a BBV.
What was disappointing is that a substantial number 23% (37/161) of HCWs did not know for how long an individual could be protected against HBV after being vaccinated. This finding is similar to a study done in Egyptian HCWs, where it was found that 47% were not sure of how long they would be protected by the vaccine [13]. This study found that 66.5% (107/161) of HCWs had poor knowledge regarding vaccination against HBV, with only 23% (107/161) knowing that one needs a titre of at least 10 M/U/M of antiHBs in order to be protected against HBV. This raises the suspicion that HCWs have not been adequately trained aboutBBVs. The study done is similar to a study done in Egypt which demonstrated that 47% of HCWs did not exactly know the duration of vaccine validity [13].
This study found that 55.9% (90/161) had a positive attitude towards HBV vaccination, which is similar to a study done in Birmingham where more nurses (86%) than doctors (41%) had the attitude that all patients should be treated as if they have a blood-borne virus. The majority of HCWs (91.3%) knew that one can get HBV through a NSI, and the majority 79.5% (128/161) of HCWs did perceive themselves to be at risk of exposure to HBV since they either disagreed or strongly disagreed that they were “not at-risk for hepatitis because I am always careful when examining patients and taking specimens”. This finding is similar to a study done in Iran which showed that 70% of HCWs were concerned about BBV, but despite this, their use of protective material appeared to be influenced by the perceived risk of transmission [11].
The majority of HCWs 67.7% (109/161) and 24.2% (39/161), either strongly agreed or agreed respectively, that hepatitis vaccination should be made compulsory. In addition, 68.3% (119/161) of HCWs either did not agree or did not strongly agree that “being careful” qualified one for “not being at risk for HBV” when examining patients and taking specimens. This finding is similar to those of a study done in Texas, where only 8% of participating nurses were not willing to be vaccinated against Hepatitis B, since they perceived themselves to be at low risk as they were practicing as nurses and there was lack of concern about getting the illness.
Only 22.4% (36/161) HCWs agreed that they were not at risk for HBV because of always being careful when examining patients and taking specimens. A majority 85.7% (138/161) of HCWs either disagreed or strongly disagreed on a question “I do not trust vaccinations’, and 93.7% (151/161) either disagreed or strongly disagreed on vaccination is against my religion/traditional beliefs.
In contrast to studies done in Sweden [14] and Nigeria [15] where HCWs had a negative attitude towards vaccination because it was expensive, the majority (52.2%) [84/161]) of HCWs in this study did not know that it is expensive, and therefore did not have a negative attitude towards it’s expense. This finding may be due to the HCWs not having to pay for the vaccine themselves, but the question about who pays for their vaccination was not posed to the participants.
The majority of HCWs (72%) [116/161]) has been vaccinated against HBV, however of those vaccinated, only 27.6% (32/116) had their immunity checked and 93.75% (30/31) stated they were protected. This is in contrast to a study done in Kenya where it was found that only 12.82 (71/554) of HCWs had received vaccination previously and none had been screened for immunity or HBsAg [8]. In this study, 91.3% of HCWs knew that HBV was transmitted through a NSI but despite this, only 55.92% of them always were protective clothing when handling blood or body fluids and 38.5 said occasionally. These findings compare favorably to the practice of HCWs seen in Iran, where only 27% said they wore gloves all the time and 69% said occasionally [11].
Nevertheless, injuries go undocumented in many developing countries as compared to the US, where one out of three needle stick injuries and reported. It has been pointed out that the prevention of an occupational infection with BBVs like HBV is dependent on the integration of exposure avoidance, immunization, and PEP. Overall, it was found that 71.2% had scored 12 or more indicating overall practices towards HBV prevention was good. Nurses had a higher mean score (m=13.09) for practice compared to doctors (m=12.11) and the difference was statistically significant (t=2.14, p=0.17). This finding is similar to a study done in Birmingham where it was found that only 2% of the nurses did not report a NSI as compared to 28% of doctors who did not, which was statistically significant [12].
Although knowledge about vaccination for HBV was found to be generally poor, fortunately poor knowledge was not found to be a statistically significant barrier to vaccination, nor was good knowledge found to be a statistically significant predictor of vaccination uptake. This finding is similar to a study done in Houston, USA where vaccine effectiveness and the belief that they were at risk of exposure were cited as reason for being vaccinated by registered nurses.
However, a study done in Nigeria demonstrated that workers thought to have greater knowledge about HBV infection (doctors and nurses) were the ones who were less interested in receiving the vaccine. Non-clinical workers (medical record personnel (76/3%) and engineering staff (69.5%) demonstrated greater compliance, whilst clinical professional nurses (39.7%) and doctors (40.3%) showed less compliance [9].
Finally, it was found that being a doctor was statistically significantly associated with vaccination uptake, with doctors being 2.23 times more likely to be vaccinated than nurse (P=0.049). This finding stands in contrast to a study done in Saudi Arabia which demonstrated an overall compliance to hepatitis B vaccination of 78.7% (37/47) amongst all categories of Hews in ICU.
It can be concluded from the study that there was overall lack of knowledge amongst the majority of HCWs, despite a positive attitude in the majority of them. This positive attitude was found to be a predictor of vaccination uptake and fortunately poor knowledge was not found to be a barrier. Nevertheless, it is that training in BBVs is suboptimal at the tertiary institutions that train these HCWs.
There is a lack of implementation of policies shown in this study as reflected by the following: inadequate safe injection practices observed as more than fifty percent of HCWs experienced needle stick injuries; protective clothing was not worn by HCWs such as the HCWs right to protection against BBV is contravened. Not all HCWs were vaccinated, not all those vaccinated were given 3 doses, and not all those vaccinated were tested for immunity. It is thus, clear that there is no consistent vaccination policy at the institutions where these HCWs were employed. There is an existing gap at Nigeria health care facilities in the management of hepatitis B virus amongst HCWs, despite the vaccinate being approved by the National Department of Health (NDH).
There is a need to inform the HCWs of the availability of an effective, safe vaccine that prevents HBV. This has been identified as a cost-effective public health intervention for protection against HBV. Although a majority of HCWs demonstrated a positive attitude, education on HBV infection has to be continued to target those who still have a negative attitude and to prevent regression.
All health care faci2021 Copyright OAT. All rights reservto minimize risk, including infection control programs. This demonstrate the fact that it is both the duty of the employee and the employer to curtail the spread of the infection.
It is recommended that hepatitis B vaccine protocol should available at each health care facility, and a representing body to monitor and evaluate policies that are in place, and to see to it that they are implemented and adhered to.
In addition, programs need to be implemented to identify HBsAg Positive HCWs and to refer them for appropriate medical management, and provide vaccination to their contacts, preferable, this should be done at the beginning of the HCWs profession. Extending these services to HCWs identified as HBsAg positive with help preventing squeal in chronically infected HCWs and enhances vaccination strategies for elimination of HBV transmission.
Thirty articles were selected for inclusion in this LR, from which four emergent themes were identified. These were: (1) end-of-life care approaches, policies and guidelines; (2) challenges experienced by members of the health and social care team trying to provide high quality, responsive, person-centred care to people with intellectual disabilities at the end of life; (3) the importance, challenges and benefits of communication in providing care to people with intellectual disabilities at the end of life; and (4) examples of good practice that include placing a high value on holistic end-of-life care that emphasises working collaboratively and inclusively with family and friends. The second theme – challenges – is a portmanteau category containing multiple factors including lack of training, inexperience in dealing with death, and insufficient support in managing their own, and others’, grief.
Approaches, policies, guidelines and practices
A study of the experiences of health and social care staff in dealing with issues surrounding dying and death in the care and support of people with intellectual disabilities [14] conducted in-depth interviews with 22 individuals across five health providers. The dominant theme emerging from the study was the commitment staff have to ‘being there’, caring for and supporting people with intellectual disabilities through three stages: dying, death and beyond death. Being there for the person with an intellectual disability after death involved dealing with the corpse, being involved in planning funerals and keeping the person alive socially through remembrance. Researchers support the holistic approach asserting that working with and researching people with intellectual disability should be viewed as being from the cradle to the grave [15]. A content analysis of policy documents on end-of-life decisions regarding persons with intellectual disabilities from 25 residential care facilities in the Netherlands [16] identified two decision-making categories: palliative sedation and withholding/withdrawing life-sustaining treatment. Perhaps the most telling findings from this research is that, although the cross-sectional mail survey data collection instrument was sent to 140 organisations, less than 20% (n25) provided copies of polices, and that the contents of the policies were vague in relation to people with intellectual disabilities. A similar study retrospectively analysing the medical files of 47 people with intellectual disabilities who had died in a Dutch residential centre, found that end-of-life decisions were taken in 27 cases [17]. Whilst the family was involved in approximately half of the cases, the study did not find evidence of involvement of any of people with intellectual disabilities in the decision making affecting their end of life. Taken together, the findings, analyses and conclusions from [14-17] suggest that either there was an absence of policies and procedures governing these critical end-of-life care decision making processes or an update of policies and procedures in the context of autonomy and human rights.
In developing guidelines governing the disclosure/non-disclosure of life-limiting illness and impending death of people with intellectual disabilities, authors [18] highlight the absence of policies and procedures in this area of end-of-life care and support. Focus groups and semi structured interviews were conducted with 109 research participants: people with intellectual disabilities, family members and professionals specialising with intellectual disabilities. In making the decision, the guidance includes assessing the person’s decision making capacity, making best interest decisions by listening to family and carers, following the person’s wishes, and assessing the relative merits of disclosure/non-disclosure. As in the case in relation to end-of-life decision making, there is an absence of policy and procedure about whether or not, or how much, to disclose to people with intellectual disabilities at the end of life. Nevertheless, the guidelines are indicative of good practice. So the question here is, whether this is exclusive to the disable community, or if it applies as well to other communities, for example, in which ethnicity, gender, sexual orientation, age, or income level is present.
Challenges and needs of End-of-Life care providers
Members of the health and social care team participating in research regarding the development of partnerships identified three categories of challenges in providing end-of-life care for people with disabilities: marginalisation, inequity of access and inadequate coordination [19]. Marginalisation refers to the fact that people with intellectual disabilities are often provided with services that were not specifically developed with their requirements in mind. Whilst people with intellectual disabilities have the theoretical right to receive equitable end-of-life care, the research evidence indicates there is inequitable access and that often people with intellectual disabilities do not benefit from this theoretical right. This supports [20] the assertion that people with intellectual disabilities are presented with many obstacles in accessing good quality health and social care at the end of life. Thus, even before care can be provided, many people with intellectual disabilities have to overcome barriers to access. Those working with people with intellectual disabilities and their families and friends at the end of life would do well to bear this in mind.
Many members of the health and social care team are underprepared for caring for people with intellectual disabilities at the end-of-life as they do not have experience of dealing with death [21]. Research also found [22] that staff did not feel properly prepared to meet the needs of people with intellectual disabilities at the end of life. This in turn contributed to staff experiencing elevated levels of stress, particularly when there were challenging decisions to be taken, when staff felt excluded by service users’ family members and when staff had insufficient time or support to deliver care and/or mourn the death of service users.
A 14 focus group study investigating the care concerns of health and social care team members working with individuals with intellectual disabilities and late-stage dementia identified lack of knowledge and skills in caring for people with intellectual disabilities and dementia, culturally competent caring, addressing hydration/nutrition and pain anxieties, delivering palliative care and facilitating grief and loss as the key emergent themes [23]. A resultant training course addressing the highlighted issues was regarded as highly valuable by staff, particularly in relation to support for staff, family and peers in dealing with bereavement and grief. A trainer manual was developed supporting in-service training on dementia in people with intellectual disabilities across six service providers. This is particularly important as it appears to be common for there to be a lack of training in providing end-of-life care for people with intellectual disabilities [23-25].
Numerous studies identify and discuss the challenges in involving the family of people with intellectual disabilities in end-of-life care planning and decision making [26-29]. There were also challenges in working strategically, collaboratively and effectively with other professionals, whether in the same or different provider organisations [19,20,30-33]. The lack of guidance in policy and procedures is another challenge as was addressed earlier.
Some researchers [34] problematise the issue of communication asserting that, on the one hand, health and social care team members want to communicate in the styles preferred by individuals with intellectual disabilities, yet, on the other, to do so often entails being in conflict with organisational policy and practice. This suggests that organisational policies that do exist may have an inward focus rather than focussing on the best interests of those requiring care. Situations like this present frontline staff with major professional and ethical dilemmas.
Communication
Continuing with the theme of communicational challenges, a qualitative multiple case study involving semi structured interviews with professional and familial caregivers of 12 recently deceased individuals with intellectual disabilities found that the interviewees were challenged primarily by issues concerned with communication [26,35]. These included finding out the information requirements of the persons with intellectual disabilities, communicating to the dying individuals about illness and death, and ascertaining their explicit and tacit wishes. Communication is particularly important, as it is central to ascertaining the information needs and end-of-life wishes of the dying person with an intellectual disability, both of which are integral to respecting autonomy [26,35].
Challenging communication and comprehension issues are well documented elsewhere in the literature [1,24]. Some researchers [36] maintain that it is common for people with intellectual disabilities not to tell those caring for them, both professionals and family, that they are in pain. This is compounded as members of the health and social care team do not habitually use communication tools, and insufficient attention is given to adjusting for communication problems and difficulties in understanding. If health and social care professionals are aware of these difficulties, they can make preparations to augment communication. An example of this is the use of pictures as communication aids. Understanding and responding appropriately to cues is critical to successful communication and interactions with people with intellectual disabilities [1]. The authors also draw attention to the fact that people with intellectual disabilities have difficulty comprehending members of the health and social care team, particularly when there is an overreliance on verbal communication and language that are not adjusted to the levels of understanding of people with intellectual disabilities. This is significant as people with intellectual disabilities often use non-verbal cues that require non-verbal responses. Tuffrey-Wijne and McEnhill [37] point out that it is difficult to provide good quality palliative care when communication is time consuming and ineffective because of lack of understanding. Moreover, this contributes to inadequate assessment and undermines the quality of psychosocial support [20,37].
Good practice
Writing from the perspectives of individuals with intellectual disabilities, [38] identify a number of characteristics of care quality. These include integrated provision, accessibility, continuity, seamless transitions and flexibility. Respecting and fostering the autonomy of the dying person with an intellectual disability is fundamental to care quality and good practice [26] as is the fostering of high quality relationships with people with intellectual disabilities at the end of life [1,27,28,33,38,39]. This includes the active integration of the views of service users into models of care [40,41]. A necessary component of this which has been addressed earlier is enhancing the quality of communication [42]. In so doing, it is important to use plain, unambiguous language, introducing oneself to the person with an intellectual disability, being clear about the purpose of the interaction and being ‘patient’ [37]. This is particularly important when breaking bad news. When breaking bad news to a person with an intellectual disability, the author [43] advocates ‘building a foundation of knowledge’ in which information is broken down into small, discrete chunks that can be built on over time, taking into account the capacity of the individual and the support available. Working collaboratively with family, including post-bereavement support is another component of good practice [27-29,38]. Interagency and multi-professional partnership working is also identified as good practice in providing end-of-life care and services to people with intellectual disabilities [19,27,28,32,33].
All of these characteristics are premised on care being evidence-based [33] and on staff being prepared through the provision of adequate knowledge, training and management support [22,23,25].
Overall this LR has revealed that there are three main types of challenges – communication, knowledge and skills, and inexperience of dealing with dying, death and grief in a professional context. Taken together, the three categories of challenges mean that members of the health and social care team are often unprepared and unsupported during highly emotional, demanding and traumatic times. This in turn negatively affects their professional performance in three distinct ways. First, it limits their ability to respect and foster the autonomy, integrity, life values and final wishes of people with intellectual disabilities at their end of life. Second, it makes it difficult for them to engage collaboratively and supportively with family and friends of the dying persons with intellectual disabilities. Third, and often underappreciated and/or overlooked, it leaves them vulnerable to recognising and managing their own grief, feelings of helplessness and stress; all of which are highly detrimental to their psychosocial wellbeing. The use of medical humanities seems significant here as it can introduce how to handle issues of uncertainty and/or compassion and self-compassion [44].
The fulsome and creative support of senior management is also essential to achieving best practice. For example, in a time of diminishing resources, in particular finance and staff, senior management could follow the advice of [19] in initiating interagency and multi-professional partnership working in the area of information and training on end-of-life care and services for individuals with intellectual disabilities.
One of the challenges in undertaking this LR was the dearth of theoretical literature on the provision of end-of-life care for people with intellectual disabilities from the perspective of either inequalities in health or intersectionality. The current research is overwhelmingly experiential and is practically focused, addressing the challenges and experiences faced by people with intellectual disabilities, their families and friends, and the staff endeavouring to provide responsive, high quality care at a significant and difficult life stage.
In general, the lack of literature is indicative of the challenges faced by health and social care team members attempting to care for vulnerable people at the end of life. In the study on research about death, dying and intellectual disability, Todd et al. [14,15] pointed out that it is a 21st century research area which, in the first years of the new century, was still regarded as being “too emotive and certainly too incongruous for intellectual disability researchers” [14]. The authors expand on the general attitudes prevalent amongst bereavement research at the beginning of the present century. They note, for example, that not only was death, dying and intellectual disabilities not regarded as a subject meriting scholarly attention, but that short shrift was given to the very idea that the deaths of people with intellectual disabilities could contain powerful meanings for those who loved them. There seemed to have been conceptual and experiential blind spots both within academic and practitioner communities that deaths are mourned in relation to people with intellectual disabilities.
“The idea that people with intellectual disability might leave a social legacy was not entertained. This absence of thought that people with intellectual disability might just leave a gap in society when they die, no doubt, related to the general devaluing of people with intellectual disability, including their relationships with others” [15].
It may well be that one of the factors contributing to this academic and policymaking disinterestedness, is that people with intellectual disabilities were, up until fairly recently, hidden away in institutions. As such, the adage, out of sight, out of mind, may have been applicable. However, a strong theme emerging from the findings of the LR is that those working face to face with people with intellectual disabilities at the end of life are highly engaged and committed to delivering the most responsive and high quality care. Equally, such commitment and efforts are routinely stymied and undermined by the lack of appropriate policy, guidance, information, training and support. This is reflected in the facts that there is limited literature on dying, death and intellectual disabilities and that the literature has not developed, amended or applied theory to the subject.
Fortunately, if some authors [15] are correct, there is an emergent recognition and setting in order of human rights for people with intellectual disabilities that is informing and encouraging ways of addressing social death and closing the time-based gap between social death and physical death. This is reflected in [14] empirical research findings in which members of the health and social care team recognised the importance of ‘being there’ for people with intellectual disabilities not only whilst they are dying and in the moments of their deaths, but also beyond, through social remembrance. On a less sanguine note, the fact that there are few articles cited in this discussion and that there is significant absence of theory, suggests that the headline findings of the LR should be presented in the form of absences, oversights and inadequacies in terms of policy, commitment and practice on the part of policymakers, senior managers and academics. The LR provides examples of frontline health and social care workers doing what they can whilst being unprepared, underprepared and unsupported to the detriment of people with intellectual disabilities at the end of life.
This LR research question asked: How can health and social care workers deliver end-of-life care provision that respect the autonomy, life values and wishes of people with intellectual disabilities? One of the main conclusions that provides a partial answer to the question is that members of the health and social care team are committed to delivering responsive end-of-life care, however, without sufficient policy directives, information, guidance, training and formal support. Another way of putting this is that health and social care team members require clear policies, information, guidance, training and formal support from senior management so that they can deliver end-of-life care provision that respect the autonomy, life values and wishes of people with intellectual disabilities.
Specifically, the findings from the LR revealed that there is an urgent need for policies, guidance and training on appropriate and effective communication with people with disabilities generally, and at the end of their lives in particular. Many health and social care team members struggle to communicate effectively with people with intellectual disabilities at the end of life, and the knowledge that this is detrimental to the people they are caring for contributes to high levels of stress. Similarly, there are widespread deficiencies in communication and relationships with other professionals both within and across provider organisations. This also undermines the quality of care to people with intellectual disabilities at the end of life.
The LR indicates that good practice includes integrative provision that involves the person with intellectual disabilities, their family and/or friends and all service providers in decision making about end-of-life care. The sharing and use of evidence-based best practice is vital and would be enhanced by a theoretical base, universal good practice guidance/framework(s), and the unambiguous support of policymakers and senior managers.
In an era in which social care funding has and will continue to be cut with already meagre resources stretched even further, the implications for practice arising out of this LR are bleak. Not only do frontline health and social care team members have responsibility for providing emotion sapping end-of-life care to people with intellectual disabilities and their families, this LR’s findings indicate that the responsibility for advocating for more targeted and effective policies, guidance, information, training and support is also on their shoulders.
Finally, future research that develops and/or adapts theory appropriate to dying, death and intellectual disabilities would be beneficial. Similarly, more in-depth research focusing on developing end-of-life care policy and practice guidance would assist in moving research in this area forward. Presenting such research within the rubric of human rights for people with intellectual disabilities may be a means of converting the agendas of decision makers to an ethical basis and thus give due recognition to this extremely important but customarily overlooked subject.
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