Tytuł publikacji: Bereaved parent's satisfaction with home-based pediatric palliative care: Finding from Poland

Czasopismo Tytuł czasopisma: SOCIETAS/COMMUNITAS ISSN: 1895-6890 DOI: Publikacja Tytuł publikacji: Edukacja ku obywatelskości = Education towards Citizenship Data publikacji: 2013 Język: pl Tom: Zeszyt: 2 (16) Numery stron: 13-41 DOI: Link: Autorzy Imiona i nazwiska Pracownik JN Afiliacja JN Marcin Kotras Nie Nie Marcin Król Nie Nie Joanna Madalińska-Michalak Tak Tak Tomasz Szkudlarek Nie Nie Mirosława Nowak-Dziemianowicz Nie Nie Liczba pozostałych autorów, którzy nie afiliowali publikacji do JN: 4 Open access Sposób udostępnienia: Wersja tekstu:


Introduction
Pediatric palliative care (PPC) is an interdisciplinary practice and requires planning and anticipatory guidance.[1][2][3] one of the models of PPC is home-based model, but unfortunately extremely little data are available on this topic [4][5][6][7].
Modern model of PPC includes monitoring and evaluation of that care but the basic problem in the evaluation of palliative care is finding proper criteria.Measurement of satisfaction with palliative care seems to be a tool evaluating quality of care, especially useful with reference to pediatric population [8,9] In PPC due to the patients' age, type of condition, limited possibilities of communication of patient "soft criteria" (evaluation of symptoms control, quality of life) could be difficult or impossible to apply.[10][11][12] Evaluation of patients' level of satisfaction with medical care raises the interest of Polish and foreign researchers.[4,[10][11][12][13] In Poland PPC has been mainly provided by specialized palliative home care teams and that home-based model of care is called "home hospice".[11,14] Additional to planned physicians' and nurses' visits, patients have access for telephone consultation 24 -hours a day and intervention visits are always a response to the patient's health deterioration.Visits of psychologist, social worker, physiotherapist and chaplain are planned according to individual needs of each family.Home-based PPC, including medical equipments, in Poland is free of charge -all children are insured.

Material and Methods
Survey addressed to the parents/carers of all (n=51) children, who died under HHChLR care between years 2005-2010 has been conducted.Anonymous questionnaire was constructed for the needs of this from a comprehensive literature search, review of validated tools, and clinical experience.A group of six families was convened to test face validity.These questionnaires were validated by checking the logical consistency of individual questions, and different wording was used if necessary.Questionnaire was posted to the recipients, enclosing addressed return envelope.In all the cases the time from child's death to the day of mailing the survey was longer than 3 months.
Questionnaire included 36 closed questions and the socio demographic data.Out of 36 questions 27 were divided into 5 domains: general care evaluation (5 questions), evaluation of communication with hospice staff [7], evaluation of work of basic staff -physician, nurse, social worker [6], evaluation of conditions of social care [5], evaluation of the level of preparation for child's death [4].Job of a chaplain, psychologist, physiotherapist and volunteers required individual evaluation (4 questions) because of the fact that their service is optional.The remaining 5 questions referred to motivation, fears and expectations of families connected with hospice care.Answers to 31 questions evaluating different aspects of provided care were classified in a few-level scale where higher values referred to better evaluation.

Statistical analysis
For needs of comparative analysis of groups of questions standardization of results through transformation of raw results in 0-100 points scale was conducted, according to formula 15  In the 100-point scale 0 represented the lowest result, 100 the highest one.The range of points from 0 to 25 was classified as negative, the range from 26 to 50 as satisfactory, results between 51 and 75 points as good, and over 75 points as very good.
To compare study variables two-sided exact Fisher and Student's t-test were used.The result in 100-point scale was dichotomised in 75 th point and included in the logistic regression analysis as dependent variable.P-values < 0.05 were considered to be significant.Data was presented as with mean with 95% confidence interval.All analyses were performed using STATISTICA for Windows release 6.0 software and SPSS 11.5.
This study was approved by the Medical Ethics Committee of the Medical University of Lodz (RNN/419/06/KB).

Results
Surveys were directed to parents/carers of all hospice patients who died during analysed period.Out of 51 posted questionnaires 42 (82%) were returned.Out of these 37 correctly completed questionnaires were included in the analysis.
Patients and respondents characteristics are showed in Table 1.
Respondents' motivation, fears and expectations connected with hospice care are shown in Table 2.
Total value of children's families/carers satisfaction with hospice care (the sum of questions in all domains) was classified as "very good".Mean values in all surveyed domains excluding the level of preparation for child's death significantly exceeded 75 points.Detailed results of value of particular domains are presented in Tables 3 and 4.
Out of 37 respondents 15 benefited from spiritual care, 18 of psychological help, 8 of physiotherapist service and 9 of volunteers' support.Almost 30% of families participated in bereaved support groups.Chaplain's job was evaluated as "good" by the 50% of respondents, psychologist's job was classified as "very good" by majority of respondents (67%).No significant relation between value of satisfaction with hospice care and surveyed socio demographic variables (with exception of a domain evaluating basic staff job, where level of satisfaction depended on who filled in the questionnaire) were presented.Evaluation on basic staff job done by grandmothers was more critical than by mothers.

Discussion
Transition to palliative care -especially when care is planned as home-based model -is the most difficult decision for child and their parents during long period of treatment.Presented study showed main fears connected with decision to be transferred to home hospice care.Results of other studies showed positive effects of hospice intervention and support for children with life-limiting illnesses [4,13,[16][17][18].In opinion of this study authors home-based model of care should be promoted as most suitable for children and their families, as well as cheaper than the inpatient model of care.This opinion accords with the international trends which emphasise the importance of home-based PPC, especially with psychological and social input.[2,19,20] Care and dying at home becomes more and more possible due to the fast development of the symptom management, development of medical techniques and the advancement of PPC [4,21,22].Main expectations connected with hospice care indicated by respondents are similar to observations of other authors.[4,10,17,23] It is worth noting that in the domain assessing the work of the basic staff respondents evaluated highest effectiveness of the symptoms' management.Fears connected with decision to apply hospice care * Child will not to be treated 6 14 Child will die faster 8 22 Child would discover the truth abort his disease 10 27

Strangers will come to our home
We wouldn't cope with home care 15 40 Hospice introduces gloomy mood in our home 1 3 Family/friends/neighbors will have a bad opinion about us 5 13  High level of satisfaction with hospice care, presented in this study is in accordance with other authors' observations, however, there are small number of studies concerning PPC at home.[4,10,15,18] Respondents highly evaluated communication with hospice staff, what is similar to results of the research conducted previously among staff of HHChLR.[24] Many studies showed that family-staff communication issues are the central aspects of palliative care and a measurement of its is an integral part of complex evaluation of palliative care quality.[4,[25][26][27][28] Results of other authors' studies showed that parents have emphasized the importance of receiving complete and honest information and having continuous and open access to staff.2.[29][30][31] The loss of a child is one of the most stressful life events possible and it is controversial that care provided during the process of dying in comparison with other evaluated domains received low scores.On the one hand it is hard to expect full family preparation for child's death, on the other hand it is duty of hospice team to prepare family for premature and inevitable death of their child.[4,[32][33] Nevertheless a positive observation is the high evaluation of attendance of hospice team during the child's death.
The definition of palliative care includes social support for patients.In presented study domain which evaluated conditions of social care received the lowest score among domains classified as "very good".It should be emphasized that social support is not covered by medical insurance and must be funded from other sources -often with the hospice's own resources.Katz et al [34] stated that parents of children with cancer feel more satisfied with social support than parents of chronically ill children, but in this study such relationships were not observed.
Contact with the child's family can not finish at the moment of child's death because it is the most difficult and painful time for them.Many studies identified contact with staff and with other parents who lost child as important for bereaved parents.[18,25,26,28] According to results of this study two fifths of families took part in support groups organized by the hospice.
The limitations of presented survey include lack of comparison with other models of palliative care as the home-based care is dominant in Poland and a small number of participants.However the survey was addressed to all bereaved parents of HHChLR.
result possible to achieve in the scale Max -Maximal result possible to achieve in the scale

Table 1 :
Respondents and patients characteristics.

Table 2 :
Respondents' motivation, fears and expectations connected with hospice care.

s satisfaction with home-based pediatric palliative care: Finding from Poland
* Multi choice question -respondents could indicate two options of answers.

Table 3 :
Detailed results of hospice care satisfaction domains.

Table 4 :
Evaluation of hospice care satisfaction presented in the 100-points scale result significantly above 75 points.