Stress ở người chăm sóc trẻ bị hen phế quản

Một đề tài hay, độc lạ về chủ đề hen phế quản tại Việt Nam. Từ trước đến nay tại Việt Nam chưa có nghiên cứu về các căn thẳng, áp lực trên người chăm sóc trẻ bị hen phế quản. Nghiên cứu này tìm hiểu về stress ở cha mẹ chăm sóc trẻ hen phế quản. Đề tài rất hay có thể làm tài liệu tham khảo tốt. Có trích dẫn endnote đầy đủ.

Meiho University Graduate Institute of Health Care

Thesis

PARENTAL STRESS: CARING FOR A CHILD

WITH ASTHMA IN VIETNAM

Graduate student: Tran Thi Truc Tam Supervisor:Assistant Professor Ya-Fen Lien

July 2015

美和科技大學 健康照護研究所

碩士論文

PARENTAL STRESS: CARING FOR A CHILD

WITH ASTHMA IN VIETNAM

研究生：Tran Thi Truc Tam 指導教授：Ya-Fen Lien

2015 年 06 月

PARENTAL STRESS: CARING FOR A CHILD

WITH ASTHMA IN VIETNAM

Graduate student: Tran Thi Truc Tam

Supervisor: AssistantProfessor Ya-Fen Lien

In partial fulfillment of the requirement for the degree of

Master of Health Care

July2015

Asthma is a public health problem beingcommon among childrenpopulation.Having children with asthma is challenging for caregivers, especiallytheir parents Elevated levels of stress in parents are associated with poor impactsfor both parents and their children Parenting distress affects children’s quality oflife, onset and the course of asthma, behavior and emotional functioning On theother side, parents, especially mothers who are always primary caregivers ofchildren with asthma, tend to be more overprotective, overindulgent and rejectingthan those of children without asthma

In recent years, Vietnam is one of South Asian countries having growingincidence of asthma among school age children A large portion of Vietnamesestudies on asthma in children focus mainly on identifying prevalence and incidence

of asthma in general population and children subgroups as well However, to datethere are no studies on parenting stress among parents taking care of asthmaticchildren It is therefore necessary to conduct an innovative study on parental stressamong parents caring children with asthma

A cross-sectional study was conducted from 15 April to 15 May 2015 atHospital of Tropical Diseases The sampling population is parents of children withasthma visiting the hospital within the study time A structured questionnaire withthree well-designed subscales (Parenting Stress Scale; PSS; The Carolina ParentSupport Scale; CPSS; and the Patient Health Questionnaire-9; PHQ-9) wasdeveloped to serve as instruments used in face-to-face interviews.

There were a total of 171 parents of asthmatic children enrolled in the studyand most of them were female (79.53%) Generally, the age of participants wasrelative young with 77.19% were under 39 years of age Most of respondents(94.15%) were married and lived with their spouses There were 38.01%participants who had length of marriage lasted from 5 to 10 years and 36.26% hadlived together with their spouses more than 10 years The education level of most

of participants was not high with the proportions of participants who completedelementary school or secondary schools and participants who completed highschool were 30.41% and 42.11%, respectively

In general, participants received little social supports, especially from formalsources and informational supports.The mean total parenting stress score amongparents of asthmatic children was 39.17 ± 9.69 with a range varied from 21 to 58point The mean depression score among parents was 10.08 ± 7.32 It meant that

33.88% parents having depression from moderate severe to severe A multiplelinear regression analysis showed that depression, education and duration ofmarriage were the predictors of parenting stress among parents of asthmaticchildren

Acknowledgements

First of all, I would like to express my deepest gratitude to my supervisor,Professor Ya-Fen Lien, and other professors who spent valuable time ininstructing me to complete this thesis I could not fulfill my thesis withoutprofound knowledge, invaluable advices and supports from my professors All ofthese made me put more efforts to finish my thesis

Many special thanks were also sent to the Board of Directors of Nguyen TatThanh University for supporting me during my study I will always remember alluniversity officers for their help, cooperation and kindness during my study period

in Viet Nam as well as in Taiwan

I would like to send my special thanks to health-care staff in departments ofHospital of Tropical Diseases who have provided precious documents used asreference in my study My great gratitude was also given to officers, librarians,

staff of dormitory of Meiho Institute of Technology for their help and sharing asclose friends during my time of studying in Taiwan.

I would like to express my thankfulness to all participants who had nohesitation in giving help and useful information during the data collection of thestudy process

Finally, I am eternally indebted to my family who have always behind me in

my career advancement and without their helps and concerns I could not complete

my thesis

Page

Abstract i

Acknowledgements iii

List of tables xvii

List of figures xix

Chapter one Introduction 1

1.1 Statement of the problem 1

1.2 Background and significance of the study 2

1.3 Aimof the research 4

1.4 Research questions 4

1.5 Definition of term 5

1.6.Chapter summary 5

Chapter two Literature Review 7

2.1 Introduction 7

2.2 Parental stress 8

2.3 Chapter summary 31

Chapter three Research Methology 33

3.1 Introduction 33

3.2 Research design 33

3.3 Research framework 33

3.4 Sampling issues 35

3.5.Researchinstruments 36

3.6 Research Progress 42

3.7 Data management and data analysis strategy 44

3.8 Ethic issues 46

3.9 Chapter summary 46

Chapter four Results 48

4.1 Introduction 48

4.2 Demographic characteristic of parents of asthmatic children 48

4.3 Social support for parents of asthmatic child 52

4.4 Stress among parents caring asthmatic child 55

4.5 Depression status among parents caring asthmatic child 58

4.6 Relationship among demographic factors, social support, parenting stress and depression 59

4.7 Chapter summary 73

Chapter five Discussion and conclusion 75

5.1 Introduction 75

5.2.1 Demographic characteristic of participants and asthmatic children 75

5.3 Social support for parents of asthmatic child 81

5.4 Stress among parents caring asthmatic child 84

5.5 Depression status among parents caring asthmatic child 85

5.6 Relationship between factors and parenting stress 86

5.7 Contributions and implications 94

5.8 Limitations 96

5.9 Recommendation for further research 96

5.10 Conclusion 97

References

Appendix

Appendix 1: The questionnaire

Appendix 2: Informed consent

Appendix 3: Ethical certification for conducting study

Appendix 4: Consultant expert forms

List of tables

Pages

Table 1 Some popular assessment tools of parenting stress 15

Table 2 The results of reliability analysis of PSS, PHQ-9 and CPSS 45

Table 3 Demographic characteristics of parents 50

Table 4 Asthmatic child characteristics 51

Table 5 Source of informal supports and informal support score among parents of asthmatic children 52

Table 6 Source of formal supports and formal support score among parents of asthmatic children 53

Table 7 Source of Informational supports and Informational support score among parents of asthmatic children 54

Table 8 Subscale of social support and total social support score among parents of asthmatic children 55

Table 9 Parental stress subscales score and total stress score among parents of asthmatic children 56

Table 10.The depression status of parents with asthmatic children 58

Table 11 The severity of depression among parents with asthmatic children 59

Table 12 The relationship between social support and parent characteristics 60

Table 13 The relationship between social supports and child characteristics 62

Table 14 The relationship between parenting stress and parent characteristics 63

Table 15 The relationship between parenting stress and child characteristics 66

Table 16 The relationship between depression and parent characteristics 67

Table 17 The relationship between depression and child characteristics 69

Chapter one Introduction

1.1 Statement of the problem

Asthma is a widespread publichealth problem and the most common chronicillness in childhood and adolescence (Masoli, Fabian, Holt, & Beasley, 2011; H Q.Pham & Dinh, 2002; World Health Organization (WHO), 2003) According to theGlobal Asthma Report 2011(Masoli, et al., 2011), the number of people withasthma in the world may be as high as 235 million.ISAAC (2015) reported thatabout 14% of the world’s children were likely to have had asthmatic symptoms in

2013 A WHO survey (2003) estimated that 4.3% respondents aged 18-45 reported

a doctor’s diagnosis of asthma, 4.5% had reported either a doctor’s diagnosis orthat they were taking treatment for asthma, and 8.6% reported that they hadexperienced attacks of wheezing or whistling breath (symptoms of asthma) in thepreceding 12 months The highest prevalence was observed in Australia, Northernand Western Europe and Brazil

Having children with asthma is challenging for caregivers, especially theirparents (Kaugars, Klinnert, & Bender, 2004) Elevated levels of stress in parentsare associated with poor impacts for both parents and their children Parentingdistress affects children’s quality of life, onset and the course of asthma, behavior

and emotional functioning (Roddenberry & Renk, 2008) On the other side,parents, especially mothers who are always primary caregivers of children withasthma, tend to be more overprotective, overindulgent and rejecting than those ofchildren without asthma (Carson & Schauer, 1992) They perceive more stress intheir relationship with their spouse than did those of children without asthma(Carson & Schauer, 1992) A decreased quality of life including missed days ofwork, limited activities, inadequate sleep, frequent night awakening and decreasedemotional health was also acknowledged among parents of asthmatic children(J.Walker et al., 2008)

1.2 Background and significance of the study

In recent years, Vietnam is one of South Asian countries having growingincidence of asthma among school age children Few studies in Ha Noi, the capital

of Vietnam, and other large provinces in 1998 showed an estimate of 2.7%-7%childhood population acquiring asthma (Le, Phan, & Nguyen, 1998; Nguyen,1998) By the next ten years later, although there were not generic statistics for thewhole countries, several studies conducted in different provinces showed anincreased number of asthmatic children A study in HaiPhong reported anasthmatic prevalence of 9.3% among children under 18 years (H Q Pham & Dinh,2002) Three studies were carried out in Ha Noi The findings showed that agrowing number of asthma children by the time in which the proportion of asthma

increased from 10.3% in 2003 to 11.2% in 2006 (L T Pham, 2005; Phan & Ton,2006; Ton, 2003).

A large portion of Vietnamese studies on asthma in children focus mainly onidentifying prevalence and incidence of asthma in general population and childrensubgroups as well (Hoai & Nguyen, 2010; N H Tran & Minh, 2009; T H Tran &

Vu, 2012) A similar portion tried to explore asthma-related factors and asthmamanagement among children and adolescences (Doan, 2008; T H Tran & Ho,2012; T H Tran & Vu, 2013) Few current studies put more concerns on asthmaknowledge of caregivers (Hoai, 2009; T T Tran, 2010) and quality of life ofchildren with asthma (Hoai, Tran, & Do, 2011; T B Tran, 2012) However, todatethere are no studies on parenting stress among parents taking care of asthmaticchildren The reason may be that parenting stress may be not considered as acontributor affecting to the course of asthma and treatment by both parents andprofessionals as well

In the light of the above settings, it is necessary to conduct an innovativestudy on parental stress among parents caring children with asthma What arefound in this study may implicate the extent of parental stress and related factorshaving impacts on parental stress Furthermore, the findings of the study will beused as baseline data on which health professionals in Hospital of TropicalDiseases, where the study is carried out, could develop proper intervention

strategies to help parents of children with asthma overcoming stressors occurringduring their caring.

1.3.Aimof the research

The purpose of this study is to explore the frequency of parental stressamong parents of asthmatic children and related factors that may influence to thedevelopment of parenting stress To achieve this purpose three objectives aredescribed below:

1 To explore stress, social supports and well-being amongparents of asthmaticchildren;

2 To examine the relationships among demographic characteristics, stress, socialsupports and well-being among parents of asthmatic children;

3 To investigate the significant predictors of stressamong parents of asthmaticchildren

1.5 Definition of term

Stress: traditionally, stress is defined as “a relationshipbetween the personand the environment that is appraised by the person as taxing orexceeding his orher resources and endangering his or her well-being.”(Lazarus & Folkman, 1984)

Demographic characteristics: they are characteristics of parents such as age,gender, marital status, family income and child characteristics such as age of child,age of onset, and severity of asthma

Social supports: these are supports from surrounding environment that couldhave impacts on parenting stress They include informal supports from caregivers’friend and relatives and formal supports from social networks and healthprofessionals

1.6.Chapter summary

Asthma is a widespread public health problem and the most commonchronic illness in childhood and adolescence Taking care of children with asthmamay cause a lot of stress for their parents Parenting stress not only cause badimpacts on children but also their parents In Vietnam, asthma among childrenpopulation is now growing Most studies on asthmatic children focus onepidemiology, treatment and prevention of asthma among children, whereas nostudies investigate the parenting stress among caregivers Therefore, a study onparenting stress is necessary in Vietnam The finding will be used as baseline data

on which health professionals in Hospital of Tropical Diseases could developproper intervention strategies to help parents of children with asthma overcomingstressors occurring during their caring.

Chapter two Literature Review

2.1 Introduction

Parenting stress has been recognized for years as an important factor thatcould have bad effects on both physical and mental health of both children andtheir caregivers For many chronic diseases and disabilities, parenting stress couldcontribute to depression symptoms and decreased quality of life among caregivers

of suffered children For asthma, parenting stress contribute to worse onset andcourse of the disease in children with asthma Additionally, parents themselvesexperience psychological problems during their care of children

A large number of assessment tools of parenting stress have been developedrecently Of those, parenting stress index and parenting stress scale are popularused to evaluate parenting stress among parents of children with variation ofdisabilities and chronic conditions including asthma Each of these assessment toolhas its advantages and disadvantages; therefore the usage of assessment tool need

to be consider to the aim and research questions

In general, there are various factors contributing to develop of parenting stressamong parents of asthmatic children and they may categorize into three aspects:(1) child characteristics such as age of child, age of onset, severity of asthma; (2)

demographic factors; and (3) parent characteristics All of these factors will haveimportant impacts on developing of parenting stress among parents of asthmaticchildren.

2.2 Parental stress

2.2.1 The concepts of stress and parenting stress

Lazarus and Folkman(1984)define psychological stress as “arelationshipbetween the person and the environment that is appraised by the person

as taxing orexceeding his or her resources and endangering his or her being.”(p.19) They also note that personal characteristics andenvironmentalfactors influence the person-environment relationship and causepsychological stress with different levels Many researchers so far have beendeveloping conceptual models to understand the nature of stress and its effect onman health as well Some supposed that conceptualizations of stress fall into threeprimary approaches: (1) objective(or environmental) characteristics, (2) subjectivecharacteristics, and (3) biologicresponses(Cohen, Kessler, & Gordon, 1995) Of thethree, probably the most common approach is definingstress by the events thathappen to an individual Events that are judged byconsensus to place demands on

well-an individual are labeled as ‘‘stressors.’’ Thisapproach labels objective events thatoccur in individuals’ lives as stress.The second approach argues for the importance

of factoring in the individual’ssubjective reactions to the stressor This approach

states that the amount ofstress experienced depends in large part on how anindividual interprets, orappraises, a situation and that the same objective event maycause different stressreactions in different individuals depending on their perceivedability to handle the stressor (Lazarus & Folkman, 1984).The third approach relies

on the ability to detect a biologic response to stress.This approach acknowledgesthat the same stressor may cause different reactionsin different individuals butrelies on biologic indicators of stress rather than anindividual’s self-report ofstress

However, other researchersdeveloped a concept of stress including fourdomains: (a) the stressor, or any event or situation that exceeds an individual'scoping abilities; (b) strain, or the physical and emotional symptoms of a stressfulevent, including fatigue, irritability, muscle strain, and headaches (Sheridan &Radmacher, 1998); (c) coping resources, or those things that an individual can use

to help mediate and manage the effects of a stressor, such as social supportnetworks, intrapersonal strengths and skills, and educational contacts and resources(Sheridan & Radmacher, 1998); and (d) coping strategies, or the specific ways that

an individual uses the available coping resources to avoid or reduce the effects ofstressors Examples of coping strategies might include attending a parent supportgroup, hiring a respite care worker, or simply discussing fears and concerns with afriend or family member

Given general conceptual models of stress, researchers have sought toprovidea useful conceptualization for a particular type of stress, parenting stress.Abidin(1995)acknowledges the assumption that stressors are multi-dimensionalboth in source andkind He notes that this assumption led to the identification ofthree major source domainsof stressors for parents: 1) Child Characteristics; 2)Parent Characteristics, and 3)Situational/Demographic-Life Stress Furthermore,the emotional interpretation ofsituations by parents is also play an important role indeveloping parenting stress As a result, there has been great variability inhowresearchers have chosen to operationalize the construct of parenting stress(Anastopoulos, Guevremont, Shelton, & DuPaul, 1992; Lavee, Sharlin, & Katz,1996)which has made it difficult in some cases tomake cross-study comparisons.

2.2.2 Parenting stress and chronic illnesses

A number of studies have documented associationsbetween parenting stressand childpsychologicalsequelae For children, parenting stress wasshown tomoderate the relationship between perceived vulnerability anddepressivesymptoms in youth with diabetes(Mullins et al., 2004),rheumatoidarthritis(Anthony, Bromberg, Gil, & Schanberg, 2011), and sickle celldisease (Barakat, Patterson, Daniel, & Dampier, 2008) It also has many impacts

on managements of a child’s chronic condition(Streisand, Braniecki, Tercyak, &Kazak, 2001) Barakat et al (2007) found that greater parenting stress in caregivers

of childrenwith sickle cell disease was associated with greater diseaseseverity andmore frequent health care utilization 1 yearlater

For parents, studies on children with different chronic conditions showed thatgreater general and disease-related parenting stress was associatedwithpsychological distress (e.g., depression and anxiety) in caregivers of children witharthritis(Manuel, 2001), cystic fibrosis (Driscoll et al., 2010; Thompson,Gustafson, Hamlett, & Spock, 1992), and diabetes (Driscoll, et al., 2010; Hansen,Schwartz, Weissbrod, & Taylor, 2012; Helgeson, Becker, Escobar, & Siminerio,2012; Patton, Dolan, Smith, Thomas, & Powers, 2011; Streisand et al., 2008).Kazak and Barakat(1997)reported positive associations between general parentingstress and parenting state anxiety and posttraumaticstress disorder symptoms incaregivers of children withcancer

The most frequently used coping strategy to coping with parenting stress isreframing or the ability to redefine onerous situations so that parents were moremanageable for the family In contrast, the least used strategy is the externalstrategy focused on a search for spiritual support (Luther, Canham, & Cureton,2005; Sikorová & Polochová, 2014)

2.2.3 Parental stress and asthma

2.2.3.1 The impacts of parental stress on children with asthma

Numerous studies demonstrate that parental stress may influence theonset andcourse of a child’s asthma Parenting stress is associated withan increased riskofasthma or wheeze in childhood(Kozyrskyj et al., 2008; Wright, Cohen, Carey,Weiss, & Gold, 2002) Additionally, parenting stress contributes significantly toasthma onset in childhood (Mrazek, Schuman, & Klinnert, 1998) Otherstudiesfound that children experienced parenting difficulties from their parentswere more likely to have a greater number of lifetime hospitalizations(Chen,Bloomberg, Fisher, & Strunk, 2003; Weil et al., 1999).Lower caregivermentalhealth scores wereassociated with caregiverreports of their children’s experiencingmore asthmasymptoms and more acute care visits for asthma in theprevious year,when compared to those caregivers withhigher mental health scores(Wood et al.,2002) Furthermore, few studies (Bartlett et al., 2004; Schobinger, Florin,Reichbauer, Lindemann, & Zimmer, 1993; Wood, et al., 2002)demonstrated thatincreased frequency of asthma attacks and asthma severity were associated withparenting stress Finally, increased parenting stress has been shown to beassociated with poor asthma control among asthmatic children (Sharp et al., 2009).The second impact of parenting stress is on children emotional functioning.Chiou and Hsieh (2008) compared children’s self-concepts and parenting stress

between families of children with asthma and epilepsy They found that parentingstress can significantly contribute to the child’s levels of emotional competence bywhich children with asthma had lower global self-worth scores than children withepilepsy

The third impact of parenting stress is on behavior of asthmatic children Ameta analysis of adjustment of 5000 children with asthma indicates that the level

of behavioral difficulties was higher in asthmatic than healthy children (Mc Quaid,Kopel, & Nassau, 2001) Kumari et al (2011b) showed that asthmatic childrenwithstressful parents are restless, show symptoms of distractibility and difficulty inconcentrating on their homework assignments

2.2.3.2 The impacts of stress on parents themselves

Carson and Schauer(1992) examined perceptions of parenting stress andmother-child relationships They found that the mothers of children with asthmatended to be more overprotective, rejecting, and overindulgent than mothers ofchildren without asthma Not only did mothers perceive more stress in childattachment but they also perceived more stress in their relationship with theirspouse than did mothers of children without asthma

Kumari et al.(2011b) used Parenting Stress Index (PSI) tool to assess stresslevel of parent caring children with asthma They found that parents showedsignificantly higher scores as compared to their matched controls, indicating that

they experience the parenting role, as restricting their freedom and frustratingwhen inflammation causes recurrent episodes of wheezing, breathlessness andtightness in the chest of their child These parents show symptoms of depressionthat relates to guilt and unhappy feelings Higher level of stress was also associatedwith lack of support from the spouse, family, relatives and friends, limited time forpersonal activities and parenting health problems.

Howard et al (2009) reported that parents of asthmatic children complainedabout difficulties in sleeping, night awakening and being stressed by watching theirchild during medical visits/ procedures

2.2.4 The assessment instrument of parentingstress

A number of assessment instruments have been created so that parentingstress levels can be systematically measured and quantified The informationprovided in a stress assessment can play an important role in determining whattype of intervention and services will be most beneficial to the child and thefamily However, stress assessment can also be used throughout the courseoftreatment A stress assessment could be used as a measure of programeffectiveness both during and at the end of treatment A stress assessment mightalso be useful in determining extraneous variables that may be affecting a child'sperformance in treatment(Abidin, 1990, 1995)

Table 1 Some popular assessment tools of parenting stress

Tool Author Advantages Disadvantages

Parenting stress

index

(Abidin, 1997)  Assess the impact that the

parenting role has on an individual's stress level

 Reliability and validity have been checked by many studies

 Too much items (120)

 Saving time with short questionnaire.

 Need more studies

on evaluating reliability and validity

 Identify attitudes and emotions affecting parenting behaviors

 Further information concerning its validity and

reliability Global Inventory

of Stress

(Sheridan &

Radmacher, 1998)

 Examination of coping resources, environmental stressors, and the perception of stress

 The reliability and validity

demonstratedwidely Perceived stress

1983) validity and

reliability Family inventory

of life events and

 Measure coping resources

in dealing with parenting stress

 Too much items (45-60)

 Further information concerning its validity and reliability

2.2.4.1 Parenting stress index

The Parenting Stress Index (PSI) was developed by Abidin(1997)and isintended to assess the impact that the parenting role has on an individual's stresslevel The PSI is a 120-item instrument that is available in both a paper version and

a computer program The 120 items are divided into the three separate sections ofchild characteristics, parent characteristics, and a stressful life events scale Thestressful life events scale is optional and does not have to be completed to obtain avalid score The items in the child characteristics domain are further divided intothe subscales of adaptability, demandingness, mood, distractibility/hyperactivity,

acceptability of child to parent, and child's reinforcement of parent The items inthe parent characteristics domain are divided into the subscales of depression,attachment to child, social isolation, sense of competence in the parenting role,relationship with spouse/parenting partner, role restrictions, and parenting health.Both the parent and the child characteristics sections are scored on a 5-pointLikert-type scale, with a response of 5 indicating "strongly agree" and 1 meaning

"strongly disagree." Responses to the stressful life events scale are recorded in ayes/no format The results are presented with asubscore for each category and atotal score, which can be interpreted using the computer program or informationprovided in the test manual The PSI was originally intended for use with parentswho have at least a fifth-grade reading level and who have children between theages of 6 months to 10 years A short version of the PSI is available and consists of

36 items drawn from the original version (Abidin, 1997)

Various studies have explored the reliability and validity of the PSI, with thetest manual providing the abstracts of more than 250 studies involving the PSI Acurrent meta-analysis study showed that among 96 included studies on parentingstress, 27 applied PSI and 31 utilized PSI/SF (Cousino & Hazen, 2013) According

to Abidin(1997), the test-retest reliability of the tool is fairly strong, with a range

of .65 to .96 for the total score when the retests were conducted across time

intervals from 3 weeks to a year The average coefficient alpha reliability for thetotal score is 0.95 (Abidin, 1997)

Despite the apparent strengths of the instrument (such as: its flexibility, itsstrong predictive validity, and its unique examination of both parent and childcharacteristics) the PSI does have at least one important drawback According toseveral researchers, the standardization sample used in both the development of thetest and for score interpretation is fairly limited and is not adequatelyrepresentative of the U.S population (Gresham, 1989; Wantz, 1989) There is aclear need for information regarding the instrument's use with parents with a widerange of education and income levels, as well as parents of non-Caucasianethnicity and from a broader geographic region Once a more representativestandardization sample is provided, the PSI will be an effective instrument forassessing the stress levels of parents of children with disabilities

2.2.4.2 Parenting stress scale

The Parenting Stress Scale (PSS) is an assessment tool designed to measurethe level of stress parents experience as a result of having children (Berry & Jones,1995) This tool is similar to the PSI in that both focus specifically on the stressgenerated by the parenting role, as opposed to the large number of instruments thatfail to separate parenting stress from the stress that may result from other roles andsituations, such as marital or financial difficulties

The PSS consists of 18 items and describes the parent-child relationship andthe parent's feelings regarding it Parents respond by indicating the extent to whichthey agree or disagree with the statement A Likert-type scale is used, with 1indicating a strong disagreement and 5 indicating a strong agreement Bothpositive and negative items are included, which allows the instrument to assessstress by weighing the negative impact of parenting against the benefits it mayprovide For example, a positive item is "I am happy in my role as a parent." Anexample of a negative item is "I feel overwhelmed by the responsibilities of being

a parent" (Berry & Jones, 1995) Although the scale's developers did not providedetailed information about the intended population or the length of time necessaryfor administration, the Parenting Stress Scale was described as "appropriate forboth mothers and fathers and for parents of children with and without clinicalproblems, and it is brief and easy to administer and score" (Berry & Jones, 1995).Tests of the scale's validity were performed with the standardization sampleand several independent samples, during which Berry and Jones (1995)discoveredthat scores on the Parenting Stress Scale were significantly correlated with scores

on other measurements of stress, such as the Perceived Stress Scale (PSS) and thePSI In addition, scores on the Parenting Stress Scale effectively discriminatedbetween the parents of typically developing children and parents of children withdevelopmental delays and disabilities, as well as children with behavior problems

The validity of the scale was also assessed by comparing it to measures of emotion,social support, and role satisfaction, with the results indicating that the scores onthe Parenting Stress Scale were significantly correlated with the results on theadditional measures (Berry & Jones, 1995).

An apparent strength of the scale lies in its ability to isolate and examine thestress that occurs as a result of the parenting role, without confounding thoseresults with marital, financial, or other general life stress However, anexaminationof the demographic data of the samples used for the scale'sdevelopment and standardization reveals a drawback The ethnic distributions ofthe two samples used were 91% and 95% Caucasian, indicating a need for furtherstudy of the scale's validity with a more ethnically diverse population (Berry &Jones, 1995) In summary, the Parenting Stress Scale appears to be an effectivetool for assessing the level of stress that can be attributed to the parenting role.With further evidence of the scale's reliability and validity, the tool is likely to beeligible for recommendation in clinical use

2.2.4.3 Cleminshaw-Guidubaldi parent satisfaction scale

Although the Cleminshaw-Guidubaldi Parent Satisfaction Scale does notdirectly measure the construct of stress, it is appropriate for inclusion in a

discussion of parenting stress because the purpose of the scale is to measureparents' current level of satisfaction with the parenting experience, which maycontribute to or reduce the amount of stress experienced by parents (Guidubaldi &Cleminshaw, 1985) As the scale's developers suggest, the Cleminshaw-GuidubaldiParent Satisfaction Scale could potentially allow professionals to identify attitudesand emotions that may directly affect parenting behaviors.

Although the Cleminshaw-Guidubaldi Parent Satisfaction Scale appears toserve an important function in identifying attitudes and emotions that directlyinfluence parenting, there is a clear need for further information concerning itsvalidity and reliability and its effective use in a variety of clinical and researchsituations The developers of the assessment recommend using the scale only forresearch purposes until further information is available (Guidubaldi &Cleminshaw, 1985)

2.2.4.4 Global Inventory of Stress

The Global Inventory of Stress (GIS) has been described as a generic scale(Sheridan & Radmacher, 1998)because unlike several other assessments, it doesnotfocus on one specific dimension of stress Instead, the GIS provides a morecomprehensive examination of the three major dimensions of stress: copingresources, environmental stressors, and the perception of stress Each of these areas

is measured equally in the determination of a total stress score

The reliability and validity of the GIS has been demonstrated across a diversepopulation and in a variety of settings(Feldt & Rasku, 1998; Scully, Tosi, &Banning, 2000; Sheridan & Radmacher, 1998) In addition to its apparentpsychometric strength, the brief time necessary for administration and globalapproach make the scale an effective and efficient tool that is appropriate for awide range of use, including the assessment of the stress levels of parents ofchildren with disabilities.

2.2.4.5 Perceived stress scale (PSS)

The PSS is an instrument intended to provide a global measure of the extent

to which an individual perceives his or her life to be stressful (Cohen, et al., 1983).Whereas more objective tools are typically designed to measure the number ofpotentially stressful events or situations occurring in an individual's life, the PSSattempts to assess the respondent's beliefs about those events, which may provide amore accurate description of the actual level of stress being experienced (Cohen,

et al., 1983) Although the PSS does not measure the amount of coping resourcesavailable to a respondent or the skills necessary to effectively utilize thoseresources, by assessing how stress is being perceived, the effects of those resourcesare measured indirectly

2.2.4.5 Family inventory of life events and changes (FILE)

The FILE is a self-report questionnaire that is intended to assess the presence

of events and changes that are occurring within a family that function as stressors(McCubbin & Patterson, 1991) The presence of these stressors is used as a means

of determining the amount of stress being experienced by a family Usingthenumber of stressors to assess the stress levels experienced by a family mayprovide a more objective evaluation than instruments, such as the PSS, that rely onsubjective reports of the stress experienced

The authors of the FILE conducted an assessment of its internal consistencyreliability for both the total score and the scale sub-scores (McCubbin & Patterson,1991) A reliability score of 81 was found for the total score, and a range of 30

to 73 was found for the different subscales McCubbin and Patterson (1991)alsoexamined the scale's validity by comparing it to a similar family functioninginstrument, the Family Environment Scales The results show that there is a strongcorrelation between above two instruments in the direction expected

One disadvantage of the FILE is its length of 71 items, which may make it aless desirable choice for those professionals needing a brief assessment for initialscreening purposes However, this disadvantage may be outweighed by thevaluable information that such a thorough instrument can provide

2.2.4.6 Coping Resources Inventory for Stress

The Coping Resources Inventory for Stress (CRIS) is an assessmentinstrument designed to measure coping resources, such as problem-solving skills,physical fitness, confidence, and social support (Matheny & Curlette, 1998) Thedevelopers of the tool emphasize that coping resources differ from copingresponses Coping resources are described as those things that are in place beforethe stressful events occur; coping responses have been defined as the way thatindividuals react after the stressful events have occurred (Matheny & Curlette,1998).

In examinations of the instrument's reliability, internal consistency has beenfound to be relatively high, with a median score of .88 and a range of .84

to 97(Matheny & Curlette, 1998) The test-retest reliability of the CRIS was testedacross a 4-week period, with a resulting mean score of 95 (Matheny & Curlette,1998) The concurrent validity of the CRIS was demonstrated by comparing theinstrument to seven other tools and strong positive correlations were foundbetween the CRIS and those instruments predicted to have convergent scores; thestrong negative correlations were found with those instruments expected to bedivergent (Matheny & Curlette, 1998)

Similar to the FILE, a disadvantage of the CRIS is its duration ofadministration, which at 45 to 60 min may limit its appropriateness for inclusion in

an assessment battery However, the important information it provides about

coping resources and its predictive validity makes the CRIS worthy ofconsideration for professional use.

2.2.4.7 Pediatric Inventory for Parents

The most commonly used measure of disease-related parenting stress is the42-itemPediatric Inventory for Parents (PIP) (Cousino & Hazen, 2013) The PIPasks parents toindicate the frequency at which disease-related parentingstressoroccurs, and the difficulty-level of each stressor(Streisand, et al., 2001) The PIPhas been used to assessdisease-related parenting stress among parents ofchildrenwith cancer (Vrijmoet-Wiersma et al., 2010), diabetes(Hansen, et al.,2012; Lewin et al., 2005), and sickle cell disease(Barakat, et al., 2007)

2.2.5 The factors influencing parenting stress

There are three major groups of factors that contribute to elevated stress inparents of children with chronic illnesses: (1) child characteristics; (2) parentcharacteristics and social supports

2.2.5.1 Child characteristics

Child age

The influence of the child’s age on parenting stress is unclear Mash andJohnston(1983)reported that younger children were perceived as more stressful forparents than older children On the contrary, other studiesfound that as adevelopmentally delayed child growsolder, family stress increases as parentsdevelop a morerealistic view of the child’s future and outcome(Donovan, 1988;Dyson, 1993) However, some recent studies showed that child age was notassociatedwith any dimension of maternal stress(Johnston, Hessl, & et al, 2003;Kozyrskyj, et al., 2008).

Medicationadherence

Celano et al (2011)reported that betterfamily management of asthma across anumber of domains(e.g., medication adherence, asthma knowledge) was associatedwith less general parenting stress, while Joseph et al (2003)demonstrateda similarassociation between better adherence to dust mitecontroland less parenting stress.However, DeMore et al.(2005)found that greater medication (inhaler)adherencewas associated with increased general parenting stress

Severity of chronic diseases

There is no consensus on the relation between severity of children withchronic diseases and stress in parents In children with autism, some authorsreported the presence of this relationship(Hastings & Johnson, 2001; Hoffman,Sweeney, & Lopez-Wagner, 2008), but others just found poor associations or noconnections (Konstantareas & Papageorgiou, 2006; Tobing & Glenwick, 2002) Inchildren with asthma, few studies demonstrated that asthma severity was unrelated

to general parenting stress(Caffrey-Craig, 2005; Chiou & Hsieh, 2008)

Sleeping problems

One of the sources of stress experienced byparents is also the disturbances inthe child’s circadian rhythm Studies showed that a number of children with autismhave sleeping problems, such as excessively short sleep time, trouble fallingasleep, waking up multiple times at night, problems getting out of bed in themorning and drowsiness during the day (Goodlin-Jones, Tang, Liu, & Anders,2008) These problems cause significant fatigue in parents, sometimes bordering

on exhaustion, and are associated with parents’ elevated stress and sleepingdisorders (Hoffman et al., 2008) Parents who take care of children with asthmaalso have the same problems as studies reported that the existence of sleep-disordered breathing inaddition to asthma was associated with greatergeneralparenting stress (Fagnano et al., 2009)

2.2.5.2 Parent characteristics