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2015 Children with Asthma: What About the Quality of Life of Their aP rents? Anna Trzcieniecka-Green School of Economics,

Kamilla Bargiel-Matusiewicz , Poland

Agnieszka Wilczyńska Silesian University, Poland

Hatim A. Omar University of Kentucky, [email protected] Right click to open a feedback form in a new tab to let us know how this document benefits oy u.

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Repository Citation Trzcieniecka-Green, Anna; Bargiel-Matusiewicz, Kamilla; Wilczyńska, Agnieszka; and Omar, Hatim A., "Children with Asthma: What About the Quality of Life of Their aP rents?" (2015). Pediatrics Faculty Publications. 192. https://uknowledge.uky.edu/pediatrics_facpub/192

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Notes/Citation Information Published in Child and Adolescent Health Issues: A Tribute to the Pediatrician Donald E. Greydanus. Joav Merrick, (Ed.). p. 114-120.

© 2015 Nova Science Publishers, Inc.

The opc yright holders have granted the permission for posting the article here.

Reprinted as a book chapter in Child and Adolescent Health Yearbook 2015. Joav Merrick, (Ed.). p. 383-390.

Reprinted as an article in International Journal of Child and Adolescent Health, v. 8, no. 3, p. 351-355.

This book chapter is available at UKnowledge: https://uknowledge.uky.edu/pediatrics_facpub/192 Ln: Chi h.J and Adolescent Health Issues ISBN: 978- I-63463-574-5 Editor: Joav Merrick © 20 IS Nova Science Publishers. lnc.

Chctpt~r II

CHILDREN WITH ASTHMA: WHAT ABOUT THE QUALITY OF LIFE OF THEIR PARENTS?

1 Amw Trzcieniecka-Greeu, MA, PhD , Kamillll Bargiel-Matusiewicz, MA, PkTY, Agnieszka Wilczynska, MA, PlzD3 and Hatim A Omar, MD.J., 1 Department of Social Sciences, Katowice School of Economics, Katowice. Poland 2Faculty of Psychology, University of Warsaw. Warsaw, Poland 3Paculty of Psychology. Silesian University, Katowice. Poland "'Division of Adolescent Medicine, Kentucky ChHdren 's Hospital. University of Kentucky College ofMedicine. Lexington, Kentucky, United States of America

An increased frequency of aslhma in children has been lately observed. The course of asthma depends not onl y on treatment. but also on the uctions taken by the parems of n sick child. Design: A r\on-experimental cross-sectional desi.gn. Methods: In this study the Pedlrnric Asdm1o Quality of Life Questionnaire (PACQLQ) and Satisfaction with U fe Scale (SWLS) were administered to 60 parents of children wi th :lsthmn. Two groups of parent ~ were cl.lmparecl. The first group consisted of pu-ents of children who had been diag,nosed with ns tbmn less than three months before the beginning oF the stud y. Tbe second grmJp consisted of parents of children who had been di rtguosed or least one year previously. Results: It was observed that. in lhe group of parents aged 20-30 years. the level of life satisfaction was significantly higher for parents of children who had suffered (roru asthma for nt least one year thau for tl1e parentq of children recently diagnosed with asthm::.. There were no statistically significant differences in the other age gr•oups. There was a positive con-elation between the level of satisfaction with life and emotional functioning in the parents of children diagnosed recently. Conclusions: T he results of the present study poim to a general ability of parents to adapt to the situation of having an ill child. This may be related to the relative ease of access to informalion thnt enables pnrents to understand more about the condition.

• Com:spondc:-nce: Professor Hatim A Omar, MD. Division of Adolescent MIXI•cmc:: and Young Parents Program. KY Clinit'. J-l22. Le.ungton. KY 40536..{)284, Unitetl Sllll~ E-mnil: hnornnr2@'uky.edu

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INTRODUCTION

An increased prevalence of asthma in children has been reported ( I J. The course of asthma depends not only on treatment. but also on the actions taken by tbe parents of a stck child (2.3). Caring for a patient with asthma requires a lot more work than caring for a healthy child C4.5). Accordingly. this Study focused on the quality of life and satisfaction with life of those wbo take care of children with asthma. Quality of I ife has become an issue of interest for botJ1 academics and practitioners. At the academic level, quality of life is treated as a concept that is large ly based. on objective factors, whereas lhe concept of well-being is more subjective (6). Problems with definition arise from the fact that U1e quality of life concept has its origins in the medical and economic sciences, whereas the concepts of weJJ-being and satisfaction with life are commonly used i11 psychology (7 ).

BACKGROUND

Tbe authors of this paper applied research tools that made it possible to capture these two perspectives and to analyse the relationships between them. The World Health Organisation (WHO) clistinguishes six basic domains related to quality of life: the phy~ical dimension (pain and discomfort, energy and fatigue, sleep and rest, sex and sensory functions}; the psychological domain (positive and negative feelings, body image and cognitive processes. and self-esteem); independence (mobility. activities of daily living. working capacity. lack of dependence on medication): social relationships (practical social support, personal relationships. behaviours that support otherst t-nvironmenr (freedom and physical safety and security, home environment, satisfaction with work, financial resources. recre:llion and leisure. access to health and social care) and spiritual domain. In order to reduce errors and to conduct a deep analysis of a patient's mental and physical slate. standard surveys are used to study quality of Ufe. There are genernJ, specific. and mixed surveys. General surveys are used to assess the quality of life of healthy and sick people. and are intended for use with those with a number of condjtions, iJ.·respective of their nature. Specific SUI'veys ussess quality of life in patients with a specific condition or a group of conditions. and include questions on rhe course of an iiJnes:) and its symptoms. in patients wi th a llergies, quality of life means not onl y a lack of symptoms but it also refers to the emotional, social, and professional domains, as well as activity and the possibility of self-fulfilment. ln Lhe case of asthma. an important role is played by the fear related to their expected occurrence, which is often the reason that patiems feel less comfortable and have the sense that their 1ife is in danger even if the symptoms do not occur. The satisfaction with Ufe concept is based primarily on mood. the balance of emotional experience, and the emotional attitude to one's life (6). A chrome disease is connected with a particularly strong emotional involvement. especially for the parents of the patient. It may become a factor that threatens family integrity or, conversely, it may improve the ftmctjoning of U1e entire family (8). The behaviour and emotional state of such parents of children with chronic illnesses often display negaltve changes. involving fear and feelings of hopelessness and helplessness. Some

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studies hn ve indicated the possibility of finding a deeper sense of a difficult situation. and experiencing satisfaction and joy in connection with performjng activ1Ues related, among others, to providing care for an ill person (9,10). The parents· attitudes and emotions bave a considerable influence on the psychological comfort of an ill chlld. They may either be a source of support and provide a sense of security. or be a source of fear and provide a sense of helplessness.

OURSTDDY

The authors obtained approval from the Ethics Committee at Universiry of Warsaw to perform the study. The Polish version of the Satisfaction with Life Scale SWLS ( ll) was used to measure satisfaction with life, as expressed through a sense of satisfaction with one's achievements and conditions. The scale has five it.ems, and the answers are based on a seven­ point scale. The Pediatric Asthma Caregiver's Quality of Life Questionnaire PACQLQ (12) was used to measure the parents· quality of life. The P ACQLQ tool comprises 13 questions. four of which are relllted to restrictions in functioning. with Lhe remaining nine describing emotionn.l factors. The ~mswers are given on the basis of a seven-point scale. The study in volved 60 parents ol' children treated in lhe pediatric ward and the allergy clinic of the John Paul n Pediatric Centre in . Katowice in Poland. Tbe study group inc I uded 30 parents of children wllo had just been diagnosed wilh asthma. and 30 parents of children who had been iU for at least one year. The parents ranged io age from 20- 47 years. with the average age being approximately 32 years. Most of the participants in the study were married (91.7%), and most of the parents were employed (78.3%). The analysis covered Lhree age groups (20-30. 3 1-40 and 4J-47 years). and was based on the K.ruskai­ Wallis test which is a non-parametric equivalent of the one-way analysis of variance. Statistical analysis of correlation between the two measures used in the tudy was based on Spearman correlation coefficient R.

OUR FINDINGS

The analysis of differences i.J1 the quality of life between a group of parents whose children had been dirrgnosed with asthma during the last three months and those whose children had been sick for at least a year did not show statistically significant l.lifferences. This was true of both aspects of the quality of life studied using PACQLQ. Pul differently. tbe time that had elapsed since the time of diagnosis had no significant effect on parents· sense of having limited possibilities for action or their emotional functioning. The analysis of dHferences in satisfaction with life (measured with SWLS) between the two groups of parents showed that the differences occurred only for people nged 20-30 years. It was observed tbat in 20-30 year-olds. the level of satisfaction witb life was significanUy higher (chi-square (1)=5.17~ p

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SWLS (20-30 years)

16,0 13,7 14,0 U ,O lU,O 7.4 8.0 6,0 4,0 2,0 0,0 chlldrE'n rE'cently dla,gnosed with arthmll chlldren who have been Ill for some time

Figure J. Differences In satisfttction wilh l.lfe between parents of children re~::ently di;tgnosed with nst11m<1 unci tbose whose chiklren had been diagnosed at lens! one year previously.

The correlatton between satisfaction witb life (measured with SWLS) and emotional functjoojng (measured with PACQLQ) of parents of children who had recently been diagnosed with nsthmn was statistical! y significant ( R=0.42: p<0.005). There was no such correlatio11 for parents whose children had been ill for at least a yenr (R= 0.05 p=0.392).

DISCUSSION

~ mentioned above. parents' emotions and attitude have a cousidel'able impact on the psychological and physical comfort of children suffering from asthma. The purpose of the study was to investigate whether tl1e quality of life and sati sfaction wi th life of the parents depend on the stage of the child's illness. 1\vo groups of parents were compared: those whose children had recently been diagnosed with asthma and t11ose whose children had been iU for at lenst a year. Differences in the c1uality of life reported by these two groups were not stalistica.Uy significant. The areas studied within the concept of the quality of life included activity limitation and emotional problems parents e>.-perience as a result of their child's asthma. Thus it may be concluded that these areas do not show Large changes telated to the time that has passed since ~ uhild was diagnosed with asthma. However, rtlthougb lhe differences rec0rded were not statisticall y significant, the general tendency showed tlu1t slightly higher scores for the quality of life were recorded by parents whose cblldren bad been ill for at least· a year It might demonstrate the ability of parents to adapt to an existing situation. With regard to satisfaction with life, lt was observed U1at in the age group comprising 10 - 30 year oJds. lhe level of satisfaction was significantly lugher in parents whose children bad been suffering from asthma for at least 11 year when compared with those whose chHdren haJ been recently diagnosed with asthma. No statistically significant differences were observed in other age groups. Thus. younger parents might bave a greater capacity to adapt to coping with chron1c disease in their child.

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The adaptation to the new situation immediately after receiving the diagnosis requires the family to reorganize family life and resign from current habits. This poses a considerable challenge for parents. At the same time the parents mJght suffer anxjery and uncertainty as to whether they will be able to face the challenge. A study conducted by Trojanowska and Emeryk (8) howed that the diagnosis of children with bronchial asthma affects their parents' emotional functioning. Furthermore. it can be observed that there is a positive dependence among the seriousness of the condition. side effects of the therapy, financial burden and the quality of life of parents whose children suffer from asthma. Everyday life is often more stable in families that have dealt with a cuild's illness for a relatively long period of time. The parents are experienced and can cope with asthma attacks and treatment-related inconvenience. Callery and Milnes ( 13) suggest U1at relationships between parents and nurses are espec.ially important as fnr as adaptation to lhe situation is concerned. The significant difference in satisfaction with life between the two S\tbsets within the group of .20-30-year-old parents may meun that younger parents adapt most easily to a child's illness and they tend to be optimistic. Therefore after a period of anxiety and experiencing difficulties wit·h 1he introduction of activities related to providing care for the child, thei.r satisfaction with life grows. Equally it is possible that a factor con·elnted wtth tbe age of the parents. not the a,ge alone, mjght accow1t for the differences observed. However, although the results of the present study point to a genernl ability of purents to adapt to the situation of having an iU child, no significant differences were found in the quaUty of life between the parents of children who had just been diagnosed with asthma, and the parents of children who had been ill for at least one year. This may result from the fact that. with current medical care. anxiety rt'lated to the diagnosis, and uncertainty in relation to the character of the illness and the prognosis. can be reduced much more quickly than in the past. This is related to the relative ease of access lo mfonnation that enables parents to understand more about the conditjoo. In addition. support groups. including those active on internet forums. allow parents with greater experience to help those who have just received n diagnosis of lheii child's illness. Parenls can thus obtato additional infoonation and receive emotional supporL The results of this study also showed tbat, in the group of parents whose children bad recentl y been diagnosed with asthma, there was a positive COITei:Hion between U1e sense of sntisfuclion with Ufe and emotional functioning related directly to the chi ld's illness. No such effect was observed in the more experienced group of parents. An interpretation of this fmding may be based on the "Onion" theory of happiness developed by Czapinski (14), who proposed that the sense of happiness is made up of three layers. The outer-most part. which is most vulnerable to changes. covers c urrent affective experience and partial satisfaction related to a number of Life aspects - e.g. professitmal work. place of residence. close interpersonal relations and current bealth condition. The middle part combines affective balance wirh a sense of the purpose and meaning of life. The inner-most - and most stable - layer is the will to live, which is to a large extent determined geneticaJly. The results of the current study show that. foll owing an initial period characterised by a clear relationship between u child's illness and general satisfaction with life, these variables are no longer significantly linked Lo each other.

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ln the parents of children who llad been ill for at least a year. no correlation was noliced between these two variables. Thus ir may be assumed that emotions related to a child's illhess in this group of parents are mostly connected with the outer-mo t layer of the sense of happiness, and have no impact on the general satisfaction with life, which is re l:~ted more closely to the deeper layers. The relationship could be seen only in parents whose chiJdren bad recently been diagnosed with asthma. It has been contirmed by numerous scientific studies that difficult situations reduce we ll-being only for limited period. An intemaJ mechamsm of affective regulation, called the hedonic treadmill makes it possible to return to the previous level of satisfaction with life ( 15).

CONCLUSION

The re..~ ult s or tlte PL'esent smdy pou11 ton general ability of parents to ada pr to the situation tW havjog nn iJJ cruid. This may be related to the relative ease of access to inJormation that ennbles parents to understand more about the cot1dition. Based on these results, parents of chHdren ill wit.11 bronchjal asthma need U1e support from medical staff and psychological help especially during the first year after diagnosis. The results also indicated that cooperation between nurses and psychologists was especially important as far as patients' quality of life is concerned.

ACKNOWLEDGt\1ENTS

111e paper was financed with educational fund s for the year 2012 us a research project no. BST J 64645/2012. TI1ere nre no conflicts of interest.

REFERENCES

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