AUTOR/ES:
Elsa Maria Oliveira Pinheiro de Melo Débora Falleiros de Mello
Semiramis Melani Melo Rocha TÍTULO:
ASSISTANCE TO THE HOSPITALIZED CHILD: A LITERATURE REVIEW ABOUT
RESULTS
The analysis of the selected articles show that was used different methodologies: no participative observation (Hallstrom et al, 2002), interview (Nuutila L, Salentera S., 2006)., questionnaire ( Kristjansdottir 1995; Graves C. Hayes V 1999; Bragadòttir 1999; Shields et al, 2003; Shields et al, 2004; Shields L. Kristensson-Hallstrom, 2004; Kyritsi et al,2005)
and inquire to collect relevant information.
The studies, described in the selected articles, are referred to different countries (Sweden, Finland, Island, England, Greece, United States of America, Canada and Australia).
The needs of the parents, when they are accompanying the child in hospital may depend on several factors, namely: the personality, the nature of the disease (chronic or temporary) the child’s state of health, the child’s reaction and the place. They may also include fundamental human needs like food, sleep/rest, facilities for hygiene, and in another level, the cognitive and emotional and psychosocial needs.
An important study on this subject, Kristjánsdóttir (1995), designs a questionnaire to evaluated parents needs perception, during the child hospitalization, their importance and satisfaction level.
This Needs Parents Questionnaire was in a first stage composed by 43 statements and the new version composed by 51 statements, about 6 categories of needs: need to trust on health care providers; the need to be trusted; the need for information; the need for support and guidance, needs related to human and physical resources, and needs related to other family members.
Some studies used Kristjánsdóttir Needs Parents Questionnaire that demonstrated it’s a relevant instrument on parents’ perceptions assessment.
Items related to the need to trust, the need for information, the need to be trusted and needs relating to the ill child and other family members were consistently rated as very important (Bragadottir 1999;
Shields et al, 2004, Shields L. Kristensson- Hallstrom, 2004). The needs for support and guidance and needs related to human and physical resources were in general rated lowest. However parents having a child hospitalized longer than 10 days tended to related this items as rather more important (Kristjánsdóttir, 1995; Bragadottir,1999 Kyritsi et al, 2005).
The findings of these studies point that the parent’s perception of items importance is significantly and positively correlated with their perception of how their needs were being met.
Some parents recognized the importance of the hospital help to fulfil these needs (Bragadottir 1999;
Kyritsi et al, 2005).
The participation in the child health care is also seen as very important for the parents (Hallstrom et al 2002; Shields L, Kristensson-Hallstrom, 2004). Also perceived as important for the parents is the information about the illness, the treatment and health care process of the child (Fisher, 1994;
Shields et al, 2004).
More recently, Nuutila anld Salentera (2006) developed a qualitative research witch aim was to describe the experiences of parents of a child with a long term illness and their relationship with the health professionals, during the learning process of the child care at home. The study showed that the parental needs are directly related whit the illness stage. At the diagnostic phase, parents need simple and clear information, on the child illness, and the available treatment. This first moment is very important to the further relations between parents and professionals because contributes to the parents trust in professionals and their expert knowledge of caring their child.
During the child hospitalization the parents had showed that they had need informed on the medical examinations results, on the future illness consequences and all the other parents’ doubts.
At the stage of leaving the hospital, parents need another kind of information and that is considered by them very important. Normally they felt insecure about providing the child care at home and they expect from the professionals a complete set of information and keeping in touch with the
professionals.
On the other hand, the professionals should make a continuous family evaluation in order to assure the child is receiving the correct treatment at home. In this inter relation trust is an important point (Nuutila and Salentera, 2006).
The Fishers study (2001) also point as an important need of parents of a child with a long term illness, the family trust in the professionals and a open communication among them to established a truly partnership. The parent’s knowledge of the prognosis it was also referred as very important. .
Conclusions:
The presence of the parents during the child hospitalization is at the top of the parents needs and this is pointed by all studies collected in our analysis. The planning of the child care should been include the information and support parents needs and their continuous assessment. It could be considered important the promotion of meetings between the health care team and the child family to guarantee the continuity and the success of the home child treatment. At these meetings the professional team should give the family writing documents with specific instructions on the child home caring. The promotion of the family groups support could be an important achievement to the final results. A better and more efficient of parent’s guidance and a precocious identification of problem-situation are important, to improve the process health-disease child and it could have a positive impact in hospitalization experience.
All the studies analysed by us points the importance of the parent’s needs satisfaction on the quality improvement of child care, during the hospitalization period. A deeper understanding of the complex human health needs is a great challenger to this kind of studies and a contribution to a new approach on the child care planning.
BIBLIOGRAFÍA:
FISHER, H. - The needs of parents with chronically sick children: a literature review. Journal of Advanced Nursing. 2001;36,4:600-607 .
SHIELDS, Linda, HUNTER Judith, HALL Jean. Parents’ and Staff’s Perceptions of Parental Needs During a Child’s Admission to Hospital: an English Perspective. Journal of Child Health Care. Sage Publications .2004; 8,1 :9-33.
SHILDS, Linda, KRISTENSSON-HALLSTRÖM, Inger, O’CALLAGHAN Michael. An Examination of the needs of parents of hospitalized children: comparing parents’ and staff’s perceptions. Scand J caring Sci. 2003 ;17:176-184.
SHILDS, Linda, KRISTENSSON-HALLSTRÖM, Inger. We have needs too: parental needs during a child’s hospitalisation. Online Brazilian Journal of Nursing (OBJN-ISSN 1676-4285, online 2004 December; 3(3) citado em 23 de Maio de 2005). Disponível em URL:
http://www.uff.br/nepae/objn303shieldsetal.htm
KRISTJÁNSDÓTTIR, Gudrún - Perceived importance of needs expressed by parents of hospitalized two-to six-year-olds. Scand J caring Sci. 1995; 9: 95-103.
BRAGADÓTTIR, Helga - A descriptive study of the extent to witch self-perceived needs of parents are met in Paediatric Units in Iceland. Scand J caring Sci.Scandinavian University Press. ISSN 0283- 9318. 13 (1998) pp. 201-207.
KYRITSI H., et al. Parents’ needs during their child’s hospitalisation. Icus Nurs Web J. 2005;23 :1-9.
NUUTILA L; SALENTERA S. Children with a long-term illness:parents'experiences of care. Journal of Pediatric Nursing.2006; 21, 2 :153-160.
FISHER M. Identified needs of parents in a pediatric Intensive care Unit. Critical care Nurse.June 1994:82-90.
GRAVES C; HAYES V. Do nurses and parents of children with chronic conditions agree on parental needs?. Journal of Pediatric Nursing. 1996;11,5:288-299.
AUTHOR/S:
:Irandokht Allahyari9(Msc), *Fatemeh Alhani(PhD), Anooshiravan Kazemnejad(PhD, Mina Izadyar(PhD). *alhani_f@modares,aAddress: Faculty of Medical Sciences, Tarbiat Modares University, Tehran, Iranc.ir
TITLE:
An investigation on the quality of life of the Thalassemic children in 2005
TEXT:
Introduction and Objective: Thalassemia is the most common genetic disease in Iran and also the world [1]. There are some 20000 children in Iran suffering from this disease. Major thalassemia, like other chronic diseases effect different aspects of patients life. So that the patient needs from first years of his/her life to receive blood, desferal and other medication to survive [2]. The children with B-thalassemia major tolerate various and chronic stress due to their to resave reputed blood infusion, dependency to health practitioner and suffering from injection, etc. all these could effect their quality of life . Accordingly, the present research is an attempt to investigation the quality of life among the children with B-thalassemia major.
Material and Methods: The present descriptive research was carried out on some 50 school-age children with B-thalassemia. The research tools include: demographic questionnaire, Ped’s QOL [3]
and QOL of thalassemia dimension. The validity and reliability of the questionnaires were assessed by content validity and test-re-test.
Results: the result showed that the subjects were 8-12 years old with mean 10±1/47 years. Their weight means were 28.5±5.19 kg and height mean 132±10.10 cm. They were studying in the grade of primary school to the first grade of middle school .the age of diagnosis and infusion in 68% of them was under first year of life and in 22% was their second year of life .Infusion interval in 74% of them was 15-21 days. Also the result showed that the general quality of life was weak in 18%, moderate in 38% and good in 44% of them. Also, the quality of life in thalassemia dimension was weak in 10%, moderate in 14%, good in 76%of them. %78 of samples has 1-2days in month absence from school.
Discussion: the result show that the quality of life of the Thalassemic children in 56% of general dimension and 24% of thalassemia dimension was weak or moderate. Mikelli & Tsiantis found that thalassemic adolescents reported more depressive symptoms and a lower quality of life than patients with short- time injuries. This finding support the need for psychological support and rehabilitation programs as a means of enhancing motivation and quality of life of thalassemic adolescents.[4] Pearson correlation test showed that there was a significant correlation ( r=0.509, p<0.01) between the Peds Qol and qol of thalassemic children
Therefore it is concluded that any increase in general QOL can increase the thalassemia QOL.
Results showed most of thalacemic children has 1-2days in months absent from school, that
effecting educational successful. The educational successful is effect on educational self esteem that it's effect on self esteem in hole [5]In during of school years absence from school effect on
educational successful and self-esteem, thus can reduce the quality of life [4]. Dimensions of self- esteem include educational self-esteem has significant relationship with quality of life [5]. One of the ways for promotion of quality of life is regulating the blood injection program with their school program [6].
Hence in order to improve thalassemic children QOL the intervention strategies should be such that take in to consideration the child, the disease, the school and society , recreation and the child’s mental and spiritual situations, so that they could be effective on all aspects of the children’s life.Therfor in the second phase we applied the family-centerd empowerment model for promotion their Qol.
BIBLIOGRAPHY:
1-Abolghasemi h, eshghi p. Comprehensive Textbook of thalassemia. 1st ed. Tehran: baghiatallah medical university publications;2004.
2- Musera W, Monguzzi G. and et al. Psychosocial support in thalassemia major. Monza Center’s Experience. Supplements Di Hematological. 1990; 75, N.S.
3- Peds QlTM pediatric Quality of life inventory version 4.0; 1998. Available from:
http://www.pedsgl.org
4- Mikelli A, Tsiantis J. Briferport : Depressive syndromes and quality of life in adolescents with b thalassemia. Journal of adolescence 2004. 24: 213-216.
5- Rpstami F. The effect of group counseling program on self-esteem and quality of life of
adolescence girls before menstraition experience . These is presented for MSC in pediatric nursing education, Tarbiat Modares University of Iran, 2005.
6-Thalassemia. Section 2. Capter 2 : so you want to know moor, 2005. Available from :www.
thalassemia.Com.Pk.Ver4.
AUTHOR/S:
Leil,iShahbazi; Tahere,salimi; Abdolreza,Sadrearhami; Farokh,Soheil arsha; khadije,Nasiriani;
Fateme Alhani
TITLE:
Educational effects on infertile women quality of life
TEXT:
Infertility is generally defind as the inability to conceive after 12 months of unprotected and appropriately timed intercoursed (1)and occure in approximately %20 of all union(2). Fecundity and giving birth to a child define the essence of life for many couples childlessness result in social stigmatization for infertile women and places them at risk of serious social and emotional consequences and leads to negatively effect of quality of life (3).Childbearing is commonly assumed to be a natural and inevitable part of being a woman.Although there is an increasing tendency among women to delay both marriage and childbearing.Motherhood is still closely connected with womenhood and believed to provide identity and status for women(4)and in one study,the 39 functionally infertile couple were judged by the authors to be "anxious and depressive person".Furthermore,the authour stated that many women suffered from dysmenorrhoea,functional sexual disorders,functional disorders in gastrointestinal area and cardiovascular problems,all of which may have a psychosomatic component(5).
In Vitro Fertilization(IVF) and another Advanced ReproductiveTreatment(ART) are medic treatments that requires a high level of active participation of the patient , who often finds the process both physically and emotionally exhausting.Studies have shown that ART treatments can exert psychosocial impacts on both patient and couples.women undergoing ART treatments usually report highe rlevels of anxiety,depression,and emotional stress. Diagnostic and intervention procedures ,which are often long and intusive,induce physical pain , disturb the patients daily routine, and put straine on the sexual relationship of the couple(6)because although the large number of referrals reflect the need for treatment,the effectiveness of the services is currently compromised by a high patient defult rate(~65%). Women often said they did not know what to expect(1) and may negative impact on various aspects of health-related of quality of life including limitations in physical functioning ,general behavior , ……. (7)and Quality of life of infertile couples is lower than that of fertile couple(8).One action to cope with this problem has been to education the patient(9).
Health related quality of life (HRQOL) is multidimensional,dynamic concept that encompasses physical,psychologic,and social aspects that are associated with a particular disease or its treatment.
Once the domain of social science,HRQOL measurement now has an important role in evaluative research as a measure of outcome.This particulary applies to clinical trials in which health status tools are being used to aid clinical decision-making regarding treatment choices by providing additional information on the benefits of medical therapies or interventions from the patient/s perspective(10).
This is the first study on HRQOL and educational effcte on HRQOL using the SF-36 questionnaire in Iranian/s infertile women.This Quasi Experime study presents the relationship with a selected list of demographic and another variables.
METHODS:
The study was Quasi-Experimental investigation of educational effectiveness on 30 infertile women reffered to Yazd infertility research and theraputic center, of Shahid Sadoghi university of Medical Science and Health services.
we used the SF-36 questionnaire before and after education to evaluate HRQOL a hand- delivered the questionnaires to patient .After group education about definition ,ethiology ,factors,diagnostic procedures,kinds of treatment ,Advanced Reproductive Treatment and especially psychosocial ,sexual,..effect of infertility at 1-2 hours.they were asked complet after one month, after education questionnaire send it back to infertility center.
HRQOL Measures:
The SF-36 questionnaire ,a generic instrument for measuring HRQOL ,developed for the Medical Outcome Study,is comromised of eight scales to measure physical and mental dimensions of health
Mesa Redonda 14 (Inglés): Health promotion
status.The eight scales are as follows:Physical Function(PF),Role-Physical (RP),BodilyPain (BP),General ealth Perceptional (GH), Vitality (VT),Social Functioning(SF),Role- Emotional(RE),and Mental Health (MH).The scales are scored on a 0-100 possible range.The scales are scored on acomponent summary scores,which aggrregrate the physical and mental components of the eight scales profile of the SF-36 Questionnaire into Physical Component Scale (PCS) and Mental Component Scale.
RESULTS:
Table1. Demographic characteristics of study population Age (years) :Mean (range) Mean 28.8 (SD 7.8) (17-47) job : housekeeper 48 80
Education level Elementary -
guidance 20 33.3 diploma 24 40
university 16 26.7 Cause of infertility
Male factor 26 43.3 Female factor 22 36.7 Combined or
undetected 12 20
Length of marriage :Mean (range) Mean 7.2 (SD 4.9) (1-21) Length of infertility :Mean (range) Mean 5.6 (SD 4.5) (6-20) Strategy of selection if female were unsuccessful for child bring
adoption 12 20
embryo of
present 6 10
Oval or sperm of present 12 20 No child 20 33.3
others 10 16.7
The most common problem about infertility Child lover 44 73.3
stress of community 8 6.7 Steress of relationship 2 3.3 Fear of aloan 4 13.3 others 2 3.3
Table 2 : Impact of instruction on quality of life in infertility women Average (mean) SF36 scores
(high scores imply a better level of health and well-being) Category on
SF36 scale Before instruction Mean/SD After instruction Mean/SD P-values Physical
functioning 58.0000 26.71570 60.6667 23.36861 0.029
Physical role
performance 56.1458 21.78756 60.2083 20.85739 0.001
Body pain 62.9167 25.52071 63.3333 26.24761 0.001
General health 59.8500 23.23777 62.3333 22.73283 N
General vitality 56.6667 15.98905 59.8333 20.90551 0.05 Total dimension
of physical 59.2281 17.07567 61.6354 18.02900 0.002 Social
functioning 57.0833 26.57802 57.0833 28.93276 N
Emotional role
performance 49.1667 14.85175 48.8889 17.87747 N
Mental health 62.6667 20.51099 62.8000 20.98670 N
Total dimension
of psychological 56.3958 12.98245 57.1514 14.92208 N
The resulted showed no significant differences among quality of life and age, Length of marriage, Education level, job.
Discussion & CONCLUSIONS:
Women in infertile couples reported poor to fair quality of life and client instruction not statistical significant effect on quality of life. also The finding showed The Length of marriage, Age, Education level, job, duration of infertility might have a ineffective impact on quality of life . Ragni G showed Male SF-36 scores were higher than those reported by women. Duration of infertility and previous IVF attempts significantly influenced HRQoL (P < 0.01). The need for IVF did not seem to markedly influence subjective health status les to improve quality of life. Monga M, Alexandrescu B, Katz SE, Stein M, Ganiats T reported Eighteen infertile couples and 12 couples seeking elective sterilization participated in the study. The Marital Adjustment Test scores for the women of the infertile couples were significantly lower than the scores of the controls (P = 0.01) . A trend toward lower quality-of-life scores was noted in women (P = 0.09) but not in the men of infertile couples. No statistically significant impact on sexual functioning in women was noted; however, the men in the infertile couples had lower total. Women in infertile couples reported poor marital adjustment and quality of life compared with controls.
so far Health professionals should be sensitive to the quality of life in infertile women of their patients to provide the best possible medical support such as consultation.Future studies will hopefully assist women in coping with the challenges and rigors of infertality and treatment and quality of life. Ideally, these studies would determine risk factors not only for psychological morbidity, but also physical morbidity, and attempt to modify psychosocial variab
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Timothy Pearman Quality of life and psychosocial adjustment in gynecologic cancer survivors, Health and Quality of Life Outcomes 2003, 1:33 .
Miller BE, Pittman B, Case D, McQuellon RP: Quality of life after treatment for gynecologic malignancies: a pilot study in an outpatient clinic.Gynecol Oncol 2002, 87:178-184.
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Monga M, Alexandrescu B, Katz SE, Stein M, Ganiats T.Impact of infertility on quality of life, marital adjustment, and sexual function. Urology. 2004 Jan;63(1):126-30.
Ragni G, Mosconi P, Baldini MP, Somigliana E, Vegetti W, Caliari I, Nicolosi AE.Health-related quality of life and need for IVF in 1000 Italian infertile couples. Hum Reprod. 2005 May;20(5):1286-91.
Julia Schmid, Sylvia Kirchengast, Elisabeth Vytiska-Binstorfer , Johannes Huber Infertility caused by PCOS—health-related quality of life among Austrian and Moslem immigrant women in Austria Human Reproduction 2004 19(10):2251-2257.
Hahn S, Janssen E O, Tan S, Pleger K, Mann K, Schedlowski M, Kimmig R, Benson S, Balamitsa E Elsenbruch, S , Clinical and psychological correlates of quality-of-life in polycystic ovary syndrome, European Journal of Endocrinology, Vol 153, Issue 6, 853-860.
SIGRID ELSENBRUCH, SUSANNE HAHN, DANIELA KOWALSKY, ALEXANDRA H. O¨
FFNER,MANFRED SCHEDLOWSKI, KLAUS MANN, ONNO E. JANSSEN ,Quality of Life, Psychosocial Well-Being, and Sexual Satisfaction in Women with Polycystic Ovary Syndrome , Journal of Clinical Endocrinology & Metabolism 88(12):5801–5807 .