STOPIEŃ ZNAJOMOŚCI PEDIATRYCZNEJ OPIEKI PALIATYWNEJ WŚRÓD PRACOWNIKÓW SŁUŻBY ZDROWIA

Oryna Z. Detsyk, Zhanna M. Zolotarova, Iryna V. Stovban, Roman M. Melnyk

Ivano-Frankivsk National Medical University, Ivano-Frankivsk, Ukraine

ABSTRACT

Introduction: In order to develop such a relatively new type of medical care in Ukraine, as pediatric palliative care, first of all, qualified medical workers are needed.

The aim: to assess the awareness of pediatric palliative care among healthcare workers providing medical services to children.

Materials and methods: It was carried out a survey at health facilities of Ivano-Frankivsk region, which provided medical care for children. It was interviewed 578 healthcare workers, among them were generally practitioners – 131, primary care pediatricians – 52, pediatricians-specialists – 36, health care managers – 78, nurses – 281. The half of the respondents (57.2%) had work experience more than 20 years.

Results: It was established that every fourth respondent (25.3%) did not know what is mean of pediatric palliative care. At the same time, the main object of its delivery was considered to be patients with cancer (71.5%), and not with incurable chronic diseases (54.8%). Only 59.7% of respondents knew that palliative care (PC) should begin with the diagnosis of an incurable disease, and not at the end of life, as well as half (52.6%) of them knew that the relatives of seriously ill children are object of PC. The majority of respondents recognized the lack of their knowledge of pediatric palliative care (85.8%). All answers differed depending on the position of respondents (p<0.05). However, regardless of this, almost all respondents (94.5%) expressed their desire to receive proper knowledge of pediatric palliative care.

Conclusion: It was established lack of knowledge on pediatric palliative care among medical workers served children. The majority of respondents recognized the lack and need of knowledge on pediatric palliative care. Overall level of knowledge among healthcare workers about palliative care was poor, and it is necessary to improve it.

Wiad Lek 2018, 71, 3 cz. I

Introduction

Nowadays, there is a huge need of pediatric palliative care (PPC) in the world. According to international researchers, the number of children in Europe who requires a PPC is 60-80 thousand [1]. More than 500 thousand children suffer from life-threatening conditions and approximately 53 thousand die each year in USA [2, 3]. In Ukraine the need for palliative care varies from 8 to 16 thousand children annually, including infants [4]. At the same time, indications for PC in pediatric practice are different from those for adults. [5]. If in adults it is mainly oncological, as well as terminal stages of cardiovascular, HIV/AIDS, tuberculosis, etc., then in children it is mostly non-cancer pathology (neurological, hereditary and congenital diseases, etc.) [4-5]. One should not forget that families with incurable person are also affected physically and especially mentally and spiritually by the challenges of the illness («hidden patients») [6-8].

That is why the main task of palliative care (PC) is to solve a complex of physical, psychosocial and spiritual problems that accompanies incurable ill patients and their families [9]. The modern European model of palliative care is a highly specialized and science-intensive branch of medical science and public health, which «includes coalition of initiatives from governments, their state institutions, and communities, often in partnerships with health and other social care organizations, to improve health in the face of life-threatening/limiting illnesses, caregiving and bereavement. These efforts occur through public education, improvement of social capital (trust, empathy and cooperation) and community development, enactment of laws, partnerships with health services and their professionals, and the creation of safe and sustainable social and physical environments» [10]. Thus, the main coordinating, integrative and communicative role is played by medical personnel. Although physicians and nurses of primary health care usually faced with palliative patients, but all medical personnel will (sooner or later) also deal with such patients. Therefore, international experts strongly recommend all countries to ensure the appropriate training of all health professionals on PC within graduate and postgraduate medical education [12-15].

Unfortunately, in Ukraine PC is a new kind of medical care, and only a few years ago attention was paid to the development of PPC institutes. It also entails new challenges for medical education toward proper training of qualified personnel [4-5, 16].

The Aim

To assess the awareness of pediatric palliative care among healthcare workers providing medical services to children.

Materials and methods

The study is fragment of Ivano-Frankivsk National Medical University’s planned comprehensive research «Justification of strategies and technologies for improving health and ensuring the population’s needs for quality medical care» (№ 0117U001669, deadline 2017-2021, supervisor – prof. O. Detsyk ).

It was carried out a survey at health facilities of Ivano-Frankivsk region, which provided medical care for children. It was interviewed 578 healthcare workers, among them were general practitioners (GP) – 131, primary care pediatricians (PPC) – 52, pediatricians-specialists – 36, health care managers – 78, nurses – 281.

The majority of the respondents (71.7%) worked in primary health care facilities, the others – in hospitals that provide secondary (26.7%) and tertiary (1.6%) medical care.

A little less than half of the respondents (40.7%) were under the age of 40, almost half of them (48.6%) – at the age of 40-59 and one in ten (10.7%) – was at retirement age.

Age structure of respondents differed depending on the profession (р<0.001). Among primary care pediatricians and specialists was the lowest percentage of the people under 40 years old (13.5% and 25.0%, respectively) and the highest one – over 60 years old (21.2% and 22.2%). The nurses were characterized by the youngest age distribution (48.4% at the age of 40 and only 3.2% – at the retirement age).

The vast majority of respondents were female (86.2%). The smallest share of women was among the health care managers (46.2%) while among the other respondents this indicator ranged from 83.2% in the group of GP to 100% among PCP (р<0.001).

The half of the respondents (57.2%) had sufficient work experience – more than 20 years. This part was the lowest (p<0.001) among GP (46.6%) and nurses (48.0%) and the highest one – in the group of PC pediatricians (72.5%) and specialists (64.7%).

Research program was approved by the Bioethics Commission of Ivano-Frankivsk National Medical University (protocol # 83/15 of 03.06.2015).

Each respondent originally signed informed consent to participate in research. Outcomes of research have been received mainly as qualitative data. That’s why there were used ways of calculation: the each factor prevalence per 100 respondents and the standard error for relative values [17]. The estimation of the reliability of the data difference in the comparison groups was performed by using χ2 test [17].

Results and Discussion

Unfortunately, one in four respondents (25.3%) acknowledged that they did not completely understand what is mean of pediatric palliative care. It is logical that these proportions were the smallest (p<0.01) among pediatricians of PC (5.8%) and specialists (11.1%), and the biggest one – among nurses (32.7%). However, it is surprising that a fairly high percentage of unknowing was found among GP (21.5%) and healthcare managers (24.7%).

It should be noted though that healthcare workers had not insufficient level of knowledge in pediatric palliative care not only quantitative but also qualitative. Thus, the majority of respondents (71.5±2.7%) identified children with cancer as the main object of PPC (Table І), that does not correspond to the real profile of children with life-limiting conditions [4].

Moreover, this opinion was mainly adhered to by GP doctors (78.6-78.8%) and nurses (71.5%), and least number of responses were given by health care managers (59.0%, р<0.001). The last ones were the most accurate to the correct interpretation of the objects of pediatric palliative care. The majority of health care managers indicated that such care is necessary for children with incurable chronic diseases (74.4%), as well as at the terminal stages of life (66.7%). Though among them there were the most those who did not contact such patients in their professional activity (37.2%).

At the same time, almost one in four (26.7%) GP and one in five (17.3%) primary care pediatricians also noted the lack of experience in the care of incurable children. Taking into account the low prevalence of diseases requiring PPC, these answers may be truly. On the other hand, as usually all patients are in contact with their GP or family doctor, and 90% of palliative patients also receive medical care at this level, so this may point out an insufficient level of knowledge of the respondents.

Only 60% (59.7±2.1%) of respondents knew that palliative care should begin directly after the diagnosis of terminally ill disease was made. At the same time, almost one in four (26.8±1.9%) considered that PPC is provided only during the last weeks of life that does not correspond with the modern concept of palliative care in general, and the peculiarities of providing it for children in particular [4, 18]. Strangely enough, primary care pediatricians (42.9%, p<0.001) the most often responded like this, that once again highlights the gaps in their knowledge in PPC.

Another proof of the above is the respondents’ answers about another PPC’ object – relatives of seriously ill children. Only half of them (52.6±2.1%) exactly knew that the family members of such patients also need palliative support, the rest ones – or hesitated (29.3±1.9%), or denied at all (18.1±1.6%) this need. In this case, the most adequate knowledge was demonstrated by primary care pediatricians, among whom only 3.8% completely denied the need in palliative care for relatives. At the same time, the least aware were GP (26.9% of such answers, р<0.05).

It should be recognized that respondents were undoubtedly aware of their lack of knowledge in PC. Only 14.2±1.5% of healthcare workers marked that they were quite competent in PPC issues. The majority of medical staff assessed their knowledge and skills as fragmentary (58.9±2.0%). Every fourth respondent (26.9±1.8%) honestly admitted that do not have it at all.

As shown in Figure 1, these answers were significantly (p<0.001) different depending on the specialty of a medical professional. Health care managers were the most critical to themselves (41.0% considered that they do not have the necessary knowledge at all, and only 5.1% of them rated it as quite sufficient). This, in our opinion, indicates a high degree of demanding for themselves as managers (in the background of their rather high level of knowledge).

Pediatricians of primary and specialized medical care also evaluated their own knowledge in PPC quite lowly (Fig. 1). A total lack of knowledge was recognized by 40.4% and 36.1% of them respectively, that could be as outcome of more frequent contact with children with life-limiting conditions, and as a result – perception of their own incompetence.

It is positive that the absolute majority of respondents (94.5±1.0%), regardless of their specialty and place of work (p>0.05), would like to receive necessary knowledge and skills for providing PPC.

Palliative care, both for adults and children, is a relatively new form of medical care not only in Ukraine but also throughout the world. Many researchers point out that in fact, there is a lack of proper knowledge of palliative care among healthcare workers and this is the reason for the low availability of PC and a serious impediment to the development of this type of medical care [12-16, 18-23].

Some scientists have received similar results with our research. Thus, Bhadra K. and others (2015) [24] showed that the majority (85%) physicians named cancer as the underlying cause of providing PC. Gopal1 KS and others (2016) [25] determined that only 38% of the interviewed medical staff knew about the timing of the start of palliative care. However, unlike our results, they did not receive a significant difference between health workers of different specialties.

The studies of Grimley ME (2011) [26], Fadare JO and others (2014) [27] also show a lack of knowledge of medical professionals on palliative care and the desire of them to receive it. The results of our work have demonstrated significantly higher level of knowledge shortage among the respondents. It can be explained by the insufficient development of PC in the country and the gaps in curricula. [4-5, 16].

Obvious objective necessity of training on palliative care for all medical personnel, including pediatricians, is confirmed by Mellor C and others (2012) [28] and Caruso Brown AE and others (2014) [29], as well as encouragement of it – by Pan H-H and others (2017) [30].

Conclusion

It was established lack of knowledge on pediatric palliative care among medical workers served children. The majority of respondents recognized the lack and need of knowledge on pediatric palliative care. Overall level of knowledge among healthcare workers about palliative care was poor, and it is necessary to improve it.

References

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The study is fragment of Ivano-Frankivsk National Medical University’s planned comprehensive research “Justification of strategies and technologies for improving health and ensuring the population’s needs for quality medical care” (№ 0117U001669, deadline 2017-2021, supervisor – prof. O. Detsyk ).

ADDRESS FOR CORRESPONDENCE

Oryna Z. Detsyk

Department of Social Medicine, Health Service Organization and Medical Law,

Ivano-Frankivsk National Medical University

Halitska str., 2, 76018, Ivano-Frankivsk, Ukraine

e-mail: oryna_detsyk@ukr.net

Received: 25.02.2018

Accepted: 02.05.2018

Table I. Contingents of children with life-limiting conditions requiring palliative care (per 100 respondents)

Objects of Pediatric Palliative Care

GP

Primary Care Pediatricians

Pediatricians specialists

Health Care Managers

Nurses

Totally

%

±m

%

±m

%

±m

%

±m

%

±m

%

±m

HIV/AIDS

42.0

4.3

61.5

6.7

41.7

8.2

29.5

5.2

36.3

2.9

39.3

2.0

Cancer

78.6

3.6

78.8

5.7

63.9

8.0

59.0

5.6

71.5

2.7

71.6

1.9

Incurable chronic diseases

64.9

4.2

57.7

6.9

58.3

8.2

74.4

4.9

43.8

3.0

54.8

2.1

Severe somatic pathology

53.4

4.4

51.9

6.9

30.6

7.7

39.7

5.5

39.5

2.9

43.3

2.1

End-stage life

71.0

4.0

67.3

6.5

61.1

8.1

66.7

5.3

38.8

2.9

53.8

2.1

Disability

38.2

4.2

38.5

6.7

33.3

7.9

29.5

5.2

41.3

2.9

38.2

2.0

Figure 1. Self assessment of knowledge and skills on PPC of respondents