Introduction ® Congenital Heart Disease (CHD) -the most common type of birth defect (CDC, 2013) identified in 9 out of every 1000 births ® CHD differ in severity, different diagnoses require varying treatments, and are associated with different degrees of debilitation and prognoses @Providing care for any child with a heart defect escalates parental stress (Brossig et al., 2007; Duguid et al., 2007). @Increased caregiver stress in response to high demands of caring for a child with chronic illness is linked to negative health outcomes in sick children (Andrews et al., 2009; Kwai-sang Yau & Li-Tsang, 1999) @Better understanding of how parents cope and the influencing factors on their coping can translate into better support for parents

Specifics re.ntal__oping when C · as a Heart Defect ~~

• Emotional significance attached with the heart, than to other equally vital organs, heart is critical in sustaining life (Wray & Sensky, 2004)

• Most children are diagnosed with CHD at a very young age (Lawoko & Soares, 2003}

Factors related to parental coping • Individual factors:

• •

Gender differences

•

Problem-solving skills (problem-focused or emotion-focused)

•

Spi r it u a Iity

Personal interpretation of the crisis event

• Environmental factors: • Family's resources including financial • Extended family structure • Educational level • Availability of social support

Coping defined • An individual's response to stressful situations and the strategies used to mediate stress (Duguid et al., 2007; Wong & Heriot, 2007L it involves psychological resources and behavioral strategies that help to eliminate, modify, or manage stressful events or crisis situations (McCubbin & Patterson,

1983} • Lazarus and Folkman {1984) identified coping as constantly changing cognitive and behavioral efforts to manage specific external or internal demands that are deemed taxing, recognized problem-focused and emotion-focused coping • Gender differences in coping : mothers vs fathers

Spirituality • Spirituality is defined as a universal human phenomenon with an assumption of wholeness of individuals and their connectedness to a higher being, which integrates the quest for meaning and purpose in life (Cavendish, 2004) • Spirituality plays a large role in coping within the health care setting (Sira & McConnell, 2008) • Parent's indicate that they retrieve feelings of comfort, strength and hope from their spirituality (Schneider & Man nell, 2006; Wilson & Miles, 2001)

Often families of children with chronic illnesses feel socially isolated from both formal and informal sources of support (Lawoko & Soares, 2003; Tak & McCubbin, 2002

• One of the largest mechanisms bringing social support to groups that would not have access (Zaidman-Zait & Jamieson, 2007) • Provides parents opportunity to discuss with others who are coping with similar problems (Coulson & Knibb, 2007 ~-~ Scharer, 2005) • Gives parents increased access to health information (Coulson, Knibb, 2007; Zaidman-Zait & Jamieson, 2007)

Theoretical Background ® Family resiliency theory- focuses on the family as a functional unit; and evaluates how the family deals with adversity (Walsh, 1996, 2003; Patterson, 2002)

® Bioecological framework- evaluates a family's adaptation to their environment via interconnecting and ever growing layers (White & Klein, 2008)

rpose of the stu y • i) to identify existing coping strategies in mothers who have a child diagnosed with CHD based on McCubbin et al.'s {1983) coping patterns • ii) to analyze which coping patterns are predominantly used in this population for effective coping • iii) to explore how spirituality and internet utilization are associated with the three different coping patterns measured by McCubbin et al. {1983)

Research Questions ® Is there a relationship between a parent's spirituality, and their use of spiritual means in parental coping patterns as measured by the Coping Health Inventory for Parents {CHIP)? ® Is there a relationship between the use of the internet and parental coping patterns as measured by CHIP? ® Is there a relationship between a child's age (infants/toddlers; preschoolers; school age children; and adolescents) and parental coping patterns as measured by CHIP?

Method ® A cross-sectional online survey, open for six weeks, for volunteers enrolled in :0 ge ..a. earL 1. to mat·- .~etwork (CHIN) forum ® Survey tool used included: ® Coping Health Inventory for Parents (McCubbin et. al.,l983) ® Spiritual Insight and Behavioral Scale (Sira & McConnell, 2008) ® Internet Use Scale (specifically developed for the study) ® Demographic questions- age, ethnicity, marital status, level of education, income, current occupation, religious background ® Child Characteristics- gender, age, cardiac diagnosis/comorbidity ® Open ended questions

nventor Parents (CHIP)

Self-report measure to assess coping behaviors in the management of family life in response to raising a child with chronic illness. 4 point Likert-type scale ranges from 0 (not helpful) -3 (extremely helpful). • CHIP 1,Coping pattern I {19 items): Maintaining family integration, cooperation, and an optimistic definition of the situation (a = o.8o ) • CHIP 2, Coping pattern II {18 items): Maintaining social support, self esteem and psychological stability (a= o.81) • CHIP 3, Coping pattern Ill {8 items): Understanding the medical situation through communication with other parents and/or with the medical staff (a= 0.72)

Scales used: • Spiritual Insight and Behavioral Scale (Sira & McConnell {2008) focused on participants' self awareness, perception, and use of spirituality in coping.

• 8 items scale 4 point Likerttype scale • Reliability a .85.

• Internet Use Scale measured parental utilization of the internet as information seekingdeveloped specifically for the study

• 5 items scale- 4-point Likerttype scale of 0 to 3 • Reliability a .68.

Sample Characterist

. IC

Category

Race

Number N=I75

Percentage

%

White Black

4

2.3

Asian

4

2.3

Multi Racial

1

o.6

Hispanic

4

2.3

Sampe Characterist Category

Number

Percentage

21-25 yrs.

4

2.2

26-30 yrs.

23

13.1

31-35 yrs.

38

21.7

41-45 yrs.

40

22.8

46-5o yrs.

36

20.5

51-55 yrs.

9

5·1

56-6o yrs.

9

5·1

. IC

Age groups

Sample • Respondents were predominantly Married (n=147)

84%

Followed Christianity (n =145) 82.9% Jewish (n=6)

3.4%

Muslim (n=1)

.6%

Spiritual not affiliated with religion (n=7)

4%

Participants did not specify religion (n=16)

9.1%

Descriptive resu Its • 41.1% mothers scored high on Coping Pattern I • 23.4% participants had high scores on Coping Pattern II • 83.4% mothers had high scores for Coping Pattern Ill • 38.9% respondents indicated a high importance of spirituality in their life • 25.1% reported a low value of spirituality • no significant difference receded in maternal coping patterns based on age group of the child

Children with CHD • 54.3%, (n= 95) of children were in the birth- three age group

• 10.9%, (n=19) children were preschoolers (4-6 years) • 17.1%, (n=30) were school aged (7-12 years) • 9.1%, (n=16} were adolescents {13-17 years) • 8.6%, (n=15} were adult children {18+ years) The primary cardiac diagnoses of 159 {90.9%) children were considered to be complex Almost half 48.9% (n= 87) mothers reported that their child had a co-morbid diagnosis (dev. delay, genetic disorders, asthma)

ey

Correlations variables Variables

1.

Coping Pattern I

2.

Coping Pattern II

.80 ·47s**

1.00

3· Coping Pattern III

·39s**

.196**

1.00

4· Spirituality Scale

378**

.127

.047

1.00

-.oo8

.4oo**

-.014

5· Internet Usage

-.025

**Correlation is Significant at the 0.01 level (2-tailed) *Correlation is significant at the 0.05 level (2-tailed)

1.00

-· 41.6

19-S4

.81

29·4

8-s1

8 .26

·72

2o.s

7-24

3 .2 1

.8s

18.S

0-32

7·32

.68

13.2

S-IS

2 .12

predict1ng Coping Pattern I (Maintaining family integration)

.411

.059

.478***

.330 .277

Note. *p

~

. 05

**p ~ .01

.228

.306

.478

. 553

***p

~

.001

****p

~

.000

• R squared change in step 2 is accounted for 7. 6% of variance in pattern I

Predicting Coping Pattern Ill (Understanding Medical Information) St ep 1

Variable

B

Coping Pattern I

.173

SE B

St ep 2

p

B

.391 ****

.031

.174

Intern et Use

r2 R

.641

SE B

.028

.393****

.097

.419****

.153

. 328

.391

.573

~R

squared change in step 2 is accounted for 27.5% of variance in pattern Ill Note. *p

~

. 05

**p ~ .01

***p

~

.001

****p

~

.000

p

Spirituality and Coping Results Participants who reported satisfactory (high) level of maintaining a family integration, cooperation and optimism in their coping {Coping Pattern I) also reported stronger sense of social support, self esteem and psychological stability, and incorporated a higher degree of spirituality as a source of strength in their coping. • Parents use spirituality to keep their family units intact, keep a positive outlook on life, as well as to make meaning and give hope

Internet and Coping • Participants who expressed a greater emphasis on understanding the medical situation {Ill) through communication with others in their coping reported effective family integration and also incorporated high level of internet mediated communication that benefit their coping • Internet usage provides a connection to other parents as well as information about their child's medical diagnosis

® "Pray and get knowledgeable" ® Both focus on helping the parent to find reasoning for having a child diagnosed with CHD. The internet does so through learning about medical condition, spirituality does so through finding meaning within ourselves or through a higher power • Internet on the other hand, focuses on garnering information from concrete sources (whether they are accurate or notL as well as connecting with others in similar situations for support

Limitations ® Strictly internet based survey: mothers were recruited from the members of the CHIN online network- may not be representative ® Fairly homogenous sample in terms of race/ ethnicity, marital status, and religious affiliation, however diverse in terms of age, education, and annual income. ® Used self report instruments to measure coping behaviors ® Only 3 fathers (among 178 participants).

Conclusion and Implications @Coping is the process: Spirituality and Internet Usage play a role in coping of having a child with CHD @By recognizing this, we may be able to better support parents which will in turn lead to better support for children @By identifying the type of mechanisms a mother is using to cope, care providers can better assist each mother in accessing resources which will be more effective for her unique coping needs (e.g. connect with a counselor/family therapist or another parent, offering guidance of hospital chaplain, or provide patient education literature related to child's diagnosis and treatments).