Parental Quality of Life: Caring for an Infant or Toddler with a Tracheostomy at Home Rachel A. Joseph, PhD, CCRN Linda M. Goodfellow, PhD, RN Lynn M. Simko, PhD, CCRN, MPH
Disclosure The authors have no relevant financial interest or affiliations with any commercial interests related to the subjects discussed within this article. No commercial support or sponsorship was provided for this educational activity.
ABSTRACT Purpose: To explore the relationships between stress, coping, duration of tracheostomy, and quality of life (QOL) of parental caregivers who care for a child with a tracheostomy at home. Design: A cross-sectional correlational design was used to study parents who care for a child with a tracheostomy at home. Family Inventory of Life Events, Family Crisis Oriented Personal Evaluation Scale, and Psychological General Well-Being Index were used to measure stress, coping, and QOL, respectively. Data were collected using both online and paper-pencil format. Main Outcome Variable: quality of life. Results: Parents who care for their infants/toddlers with a tracheostomy at home were found to be in moderate distress. Mean age of the participants was 33 years (N ⫽ 71), and the average duration of the child’s tracheotomy was 18.22 (SD ⫽ 9.59) months. Multivariate analysis showed a significant inverse relationship between QOL and stress. QOL was significantly associated with coping, B ⫽ 19.91,  ⫽ .43, p⬍.001. Keywords: parental caregivers; quality of life; QOL; stress; coping
A
Accepted for publication July 2013.
BOUT ONE IN EIGHT INFANTS ARE BORN preterm in the United States.1,2
Modern neonatal intensive care units (NICUs) along with medical and technological innovations facilitate the survival of these preterm infants. Some of these infants require prolonged ventilation for survival and undergo a tracheostomy to facilitate transition to home environment for continued care. About 1,500 tracheostomies are performed annually in infants, and most of them are the preterm infants who survive in the NICU.3 Cost containment, surge in home care business, and technological revolution hasten early discharge of these infants to home.4 Prior to discharge, these parents are trained to care for their infant, maintain equipment, and provide cardiopulmonary resuscitation if needed. Although home nursing care may
be initially available, these services are short lived, forcing parents to assume total care of their child with a tracheostomy. The parents who care for a child with a tracheostomy at home are often frightened and may experience a considerable amount of stress. Thus, their quality of life (QOL) may be altered.5
BACKGROUND A tracheostomy is a common elective procedure in children who cannot remain extubated, suffer trauma, have neurological and severe maxillofacial anomalies, and had undergone unsuccessful surgical procedures such as a cricoid split.6,7 A tracheostomy allows the infant to grow and develop, improve facial expression and phonation, learn sucking and swallowing, enhance
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comfort, facilitate teething, and be cared for in their home environment while on mechanical ventilation.7 The stress of caring for a child with a tracheostomy with varying levels of assistive technology can be time consuming and challenging. 8 Accidental extubation, delay in recognizing and clearing of secretions, or disconnection and malfunction of the ventilator can be life threatening and frightening to the parents, so much so that parents often take turns sleeping for fear of an impending death.7 These families live around the routines imposed on them by the technology as they assume the dual role of parent and that of a nurse.9,10 The extra skills required to operate the equipment, coordination of the complex care between multiple specialty groups, vulnerability in the physical condition of the child, and care needs to be met by professional staff add stress to the parents who care for their children with a tracheostomy at home.8,10 In addition, transport needs for follow-up, social isolation, and financial and emotional burden may add additional stress on these parents.8,10 The physical and emotional aspects of caregiving can affect the parents’ health and well-being, sleep patterns, relationships, and family life.11,12 Relinquishing their careers to devote more time for caregiving may also increase their financial burden, causing stress and reducing QOL.8,11
REVIEW OF LITERATURE The Double ABCX model of family stress and adaptation was the conceptual framework used to guide this study.13,14 This middle-range theory describes a precrisis and a postcrisis phase. If a family perceives that it can manage the normative and nonnormative stress of life with the available resources, a crisis can be avoided. However, when crises occur, stress can “pile up” and may impact the meaning the family ascribes to them, which can affect the level of adaptation the family achieves in spite of additional resources. This adaptation can be on a continuum between bonadaptation and maladaptation. A family that adapts well is assumed to have better QOL. Thus, the Double ABCX model includes factors such as A (stressor), B (resources), C (the meaning the family ascribes to the stressor), in the precrisis phase, X (crisis), aA (pileup of stressors), bB (additional resources), cC (the meaning the family ascribes to the new situation) which helps with coping, and xX (adaptation) which constitutes the postcrisis phase.13,14 All the variables in this study can be explained in the context of this framework.
Stress Several researchers have studied stress in the context of caregivers of chronically ill children and children dependent on technology, including a tracheostomy. Caregiver stress from lack of knowledge, inadequate caregiving training, inadequate help from health care professionals, minimal family support, disruption of household routines, and forced social isolation have been described in the literature.15 Role conflict, daily living activities, conflicting social values, uncertain
moral order of their lives, and an attempt to seek normality to obtain stability at home have also been explored.9,10 In addition, anger, disbelief, fear, anxiety, pain, confusion, conflict, feelings of inability to cope, and feelings of “emotional rollercoaster” have been expressed by parents.16,17 The responsibility of care can be frightening to parents.5 Assuming responsibility of care, fear of lack of competence, and the unpredictable outcomes of their child are known sources of stress in parental caregivers. 8,12 Fear of death or deterioration18,19 ; depressive mood, increase in daily activities, lack of happiness, and guilt 20 ; and behavior problems in school-age children, socioeconomic status, hours of care giving each day, and lack of social support system15 were described as determinants of stress. Brummelte and colleagues reported higher levels of stress in parents of preterm infants (p⬍.02) than in parents of full-term infants.21
Coping An individual’s response to a given stressor may vary. Coping plays a central role in adaptation to stressful life events and may be the link between stress and QOL. Support groups have been found to help caregivers of children with illnesses such as asthma cope.22 A social support system plays a significant role in helping parents to cope at an optimum level. Conversely, Gray found that parents of children with autism coped through their religious faith and other emotionfocused strategies rather than relying on social support. 23 Mothers (N ⫽ 628) of children who are mentally challenged were found to cope using religion-faith and denial-blame.24 Some parents who care for their children with a tracheostomy use an online social support group (http://www.tracheostomy.com) to share care-related topics, ask for advice, and update each other on their experiences.
Quality of Life QOL is a complex multidimensional concept that lacks clear definition. According to Peterman and colleagues, QOL comprises global life satisfaction, good health, adequate housing, employment, personal and family safety, education, and leisure.25 QOL can be subjective when it is about feeling good and being satisfied with things in general. It can be objective when it is about fulfilling the societal and cultural demands for material wealth, social status, and physical well-being.25 Priddis and colleagues found that fathers of children with cystic fibrosis (CF) adjusted to their child’s illness by assuming the protector role while they hid their emotions to stay strong.17 Severity of illness in children was found to be a major determinant of QOL in parental caregivers of children with CF, 26–28 cardiac disease, 29,30 and asthma.31 However, Staab and colleagues did not find any relationship between the severity of illness and parental caregiver QOL (r ⫽ .08) in parents of school-age children with CF but did find a significant relationship between the greater number of hours spent on treatment
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and the QOL of caregivers (r ⫽ ⫺.30; p⬍0.01).27 Arafa and colleagues found that additional contributing factors such as type of heart disease, age of the child, multiple children, financial situation, and comorbid conditions affect the QOL of a caregiver.29 Goldbeck and Melches argue that the severity of cardiac disease leads to social disadvantages limiting activity and social activity of the child while requiring constant supervision, thereby affecting caregiver QOL negatively.30 Halterman and colleagues stated that an increase in symptom-free days improved QOL in parents of a child with asthma.31 Fear of death or deterioration, role strain, parenting stress, and lack of recreational time were significantly associated with poor QOL in parents of patients with CF.18 Other factors that impact QOL include social risk factors,29,30 complex social issues,20,32 and increased duration of illness in the child.26,33,34 A review of the literature to date did not reveal any studies that have explored the relationships between stress, coping, duration of tracheostomy, and QOL of parental caregivers who care for their children with a tracheostomy at home.
PURPOSE OF THE STUDY The purpose of this study was to examine the relationships between QOL, stress, coping, and duration of a tracheostomy in parental caregivers who care for their children (aged one month to 36 months) with a tracheostomy at home. The research questions were as follows: (1) What is the QOL of parental caregivers of children with a tracheostomy aged one month to 36 months as measured by the Psychological General Well-Being Index (PGWBI)? (2) What is the relationship between the duration of a tracheostomy and the QOL of parental caregivers? (3) What are the relationships between caregiver stress, coping, duration of a tracheostomy, and QOL of the parental caregivers?
METHODS A cross-sectional correlational descriptive design was used to study the QOL of parental caregivers who care for their child with a tracheostomy at home. Approval was obtained from the Institutional Review Boards of Duquesne University and Nemours/Alfred I. duPont Hospital for Children. Data were collected via both online and paper-pencil survey methods. Parents of children with a tracheostomy aged one to 36 months who were cared for at home were eligible to participate. A convenience sampling method was used to recruit parents who were part of a social networking support group at http://www.tracheostomy.com and also those who responded to fliers posted at a pulmonology clinic in a pediatric hospital in the Northeastern part of the United States.
Power Analysis A power analysis was performed a priori and evaluated both the overall significance of the multiple regression model and the unique contribution of individual predictors. 35
Initially, it was performed using G*Power36 software based on the estimated effect size, power, significance level, and number of predictors and was later verified with a statistical consultant. The significance level for both analyses were set at p⫽.05. Medium effect sizes were postulated in keeping with Cohen’s37 recommendations for multiple regression analysis (i.e., both f 2 values ⫽ .15). In addition, power was set at .80, meaning there would be an 80 percent probability of reaching statistical significance if the predictors had an effect in the population. The dependent variable was QOL, and the independent variables were stress (1 score), coping (1 score), and duration of tracheostomy (1 score). Results from the power analysis showed that 77 cases would be necessary to evaluate the overall model, and 55 cases would be necessary to evaluate individual predictors. The largest N was chosen so that the multiple regression analysis would be sensitive to the least powerful comparison.
Protocol After approval was obtained from the appropriate institutional review boards, an announcement describing the study along with the survey link using SurveyMonkey was posted on the website http://www.tracheostomy.com with permission from the web administrator. Because participation in the study was voluntary, a formal consent was not obtained; submitting the completed questionnaires indicated consent. Fliers with the survey link were posted at a pulmonology clinic, and hard copy survey packets with a self-addressed stamped envelope were made available. The respiratory therapist in the pulmonology clinic was responsible for distributing the survey. The parents were instructed to mail the completed survey back to the researcher. If both parents of the child with a tracheostomy were interested in participating in the study, they were asked to complete the surveys (online or paper-pencil) separately without discussing the questions or their responses. Participants were assured anonymity.
Sample and Inclusion/Exclusion Criteria Parents, stepparents, or adoptive parents who were fluent in English and were involved in the care of at least one child with a tracheostomy at home were included in the study. Foster parents and parents of older children (older than three years of age) with a tracheostomy were excluded from participation in the study. Biological fathers or mothers who did not live with the child or participate in the care of the child were also excluded from the study.
Measures Family Inventory of Life Events and Changes (FILE). Caregiver stress in the context of this study was defined as the subjective assessment of the life situation that was perceived as stressful by the parental caregivers and was measured by using the tool FILE.38 This is a 71-item self-report instrument that evaluates the “pileup” of normative and
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nonnormative life events experienced by the parents during the previous 12 months on a dichotomous scale by answering yes or no. The score can range from zero to 71, and higher scores means higher stress to the person who completed the tool. Cronbach’s ␣ was .81, and test–retest reliability was .77.11 The FILE takes approximately ten to 15 minutes to complete. The Cronbach’s ␣ for FILE in this study was .85, indicating good internal consistency. Family Crisis Oriented Personal Evaluation Scale (F-COPES). Coping is an attempt to survive the context of the problem or emotion and was measured by using the F-COPES scale.39 F-COPES is a 30-item self-report scale that identifies problem-solving strategies on a Likert scale ranging from 1 to 5, with 1 indicating strongly disagree and 5 strongly agree. The total score can range from 30 to 150, and content and construct validity has been established. Cronbach’s ␣ was .87 (N ⫽ 2,582) and test–retest reliability was .81 (N ⫽ 116).33 Higher scores indicate better coping, and the F-COPES takes about five minutes to complete. The internal consistency for this tool in this study (Cronbach’s ␣ ⫽ .73) was acceptable.
TABLE 1
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Demographic Characteristics of the Sample (N ⫽ 71) No. (%)
Parent Mother/grandmother Father
Demographic Data Form. The researchers’ generated demographic data form was used to describe the population under study. Parent-specific information such as gender, age, education, income, employment status, marital status, race, ethnicity, insurance status, and the duration of care from other support personnel was collected. Information including age of the child with a tracheostomy, comorbid conditions, siblings, attendance in day care, and duration of tracheostomy was also collected.
67 (95) 4 (5)
Education High school
5 (7)
Some college
24 (34)
College graduate
25 (35)
Graduate school
17 (24)
Marital status Married Single/divorced/living with a partner
62 (87) 9 (13)
Employment Yes
35 (49)
No
36 (51)
Ethnicity White
Psychological General Well-Being Index (PGWBI). QOL was defined as the sum total of the mental and physical health and well-being of parents caring for a child with a tracheostomy and was measured by using the PGWBI.40 It is a 22-item unidimensional questionnaire that assesses intrapersonal affective or emotional states reflecting general well-being or distress and takes approximately ten minutes to complete. Scores of each item range from 0 to 5 with a possible global score of 0–110. Scores of 0–60 are reflective of “severe distress,” 61–72 are reflective of “moderate distress,” and scores of 73–110 are reflective of “positive well-being.” Cronbach’s ␣ coefficient has been found to range from .80 to .92. The Cronbach’s ␣ for PGWBI was found to be .94 in this study.
Mean ⫾ SD 33 ⫾ 9.58 (y)
Mean age of caregiver
63 (89)
African American
5 (7)
American Indian/Latino
3 (4)
Religion Christian Jewish Atheist/No faith
50 (70) 1 (1) 20 (29)
Age of child with tracheostomy
21.6 ⫾ 10.0 (mo)
Age at procedure
3.24 ⫾ 2.3 (mo)
Annual income (US$)
67,800 ⫾30,800
on the independent sociodemographic variables such as age, gender, marital status, educational level, and annual income (Table 1). In addition, a series of bivariate tests were used to identify which, if any, of the independent variables including duration of tracheostomy, caregiver stress, and caregiver coping were associated with the dependent variable, QOL, using a two-tailed test of significance with the p value set at ⬍.05. Multiple regression analysis was used to understand the effect of two or more variables on the global PGWBI scores used to measure QOL.
RESULTS
Data Analysis Data were uploaded into the IBM Statistical Package for the Social Sciences (SPSS) statistics for windows 20.0 Grad Pack.41 Data were coded, and a codebook was maintained. Normal distributions of scores were shown for the major variables, and the assumptions of linearity, collinearity, and homoscedasticity were met. Descriptive statistical analysis was conducted to describe the sample under study
One-hundred participants initiated the survey; however, only 71 completed all of the surveys including the four participants who completed the hard copy surveys. The average age of the child was 21.6 months (SD ⫽ 10), mean duration of tracheostomy was 18.22 months (SD ⫽ 9.59), and the mean duration of home care was more than 12 months (range of ⬍3 months to ⬎30 months). Approximately
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TABLE 2
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Descriptive Data Regarding Study-Dependent and Independent Variables (N ⫽ 71)
TABLE 4
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Multiple Regression Model Explaining Scores Reflecting Quality of Life (N ⫽ 71) SE B

0.60
5.24
.01
.91
Ethnicity (1 ⫽ White, 0 ⫽ Other)
4.97
5.51
.09
.90
Friend help (1 ⫽ Yes, 0 ⫽ No)
⫺0.58
3.62
⫺.02
.87
Smoking (1 ⫽ Yes, 0 ⫽ No)
⫺9.91
5.61
⫺.17
.08
Stress
⫺0.63
0.23
⫺.29
.008
19.91
5.03
.43
.000
Variable
N
Mean (SD)
Range
Scale Range
Variable
Duration of tracheostomy
71
18.22 (9.59)
1.00–35.00
NA
Caregiver coping
71
3.27 (0.37)
2.20–4.03
1.00–5.00
Marital status (1 ⫽ Married, 0 ⫽ Unmarried)
Caregiver stress
71
16.41 (7.78)
4.00–36.00
0.00–71.00
Quality of life
71
64.07 (17.15)
0.00–93.00
0.00–110.00
Note: Duration of tracheostomy was measured in months and obtained on the demographic data form. Caregiver coping was measured by the Family Crisis Oriented Personal Evaluation Scale (F-COPES), caregiver stress was measured by the Family Inventory of Life Events and Changes (FILE), and quality of life was measured by the Psychological General Well-Being Index (PGWBI).
50 percent of these children were on ventilator support either all the time or for at least a few hours every day. The detailed demographic data that include the participants’ role, employment status, education, religious affiliation, and the child’s gender and age are given in Table 1. More than half of the sample reported a level of education at the bachelor’s level or above (n ⫽ 52; 59 percent) and were employed outside the home (n ⫽ 35; 49 percent). Only about half of the participants (n ⫽ 41; 56.2 percent) reported feeling well prepared prior to their child’s discharge from the hospital. Similarly, about half of the study participants (n ⫽ 31; 43.1 percent) reported feeling very confident regarding caring for their child with a tracheostomy after discharge. All the study participants who provided full data for the caregiver stress (FILES), coping (F-COPES), duration of tracheostomy, and QOL (PGWBI) measures were eligible for inclusion in the final analyses (N ⫽ 71). The mean scores of the participants were 3.27 (maximum score of 5 that indicates good coping) on the coping measure and 16.41 on the stress measure (maximum score of 71 and the lower the score the lesser the stress). The mean score on the QOL measure was 64.07, which shows moderate distress in the participants.
TABLE 3
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Relationships Between and Among the Variables Studied (N ⫽ 71)
Variable
1
3
4
1. Quality of life
— .05
⫺.07
⫺.06
⫺.03
—
.23
.25*
.19
—
.32** —
2. Age of caregiver 3. Child’s age 4. Age at procedure 5. Duration of tracheostomy 6. Coping 7. Stress *p⬍.05. **p⬍.01.
2
5
6
7
.57** ⫺.46** .02
.01
.95**
⫺.13
.14
.14
⫺.04
.00
—
⫺.08
.11
—
⫺.33** —
Coping
B
p
Note: Model. R2 ⫽ .45, Adj. R2 ⫽ .39, df ⫽ 70, F ⫽ 8.58, p⬍.001. Variables that indicate significance on bivariate analysis were included in multiple regressions along with independent variables. Higher quality of life scores were significantly associated with lower levels of stress (B ⫽ ⫺0.63,  ⫽ ⫺.29, p⬍.01) and higher levels of coping (B ⫽ 19.91,  ⫽ .43, p⬍.001).
Table 2 presents the major variables that were studied. All three measures also indicated acceptable psychometric properties. For example, a reliability analysis showed acceptable levels of internal consistency for the coping (Cronbach’s ␣ for F-COPES ⫽ .73), stress (Cronbach’s ␣ for FILE ⫽ .85), and QOL (Cronbach’s ␣ for PGWBI ⫽ .94) measures. Correlation analysis indicated that there was a significant positive relationship between QOL and caregiver coping, r(69) ⫽ .57, p⬍.01, and a significant negative relationship between QOL and stress, r (69) ⫽ ⫺.46, p⬍.01. Table 3 illustrates the relationships between these variables. Multiple regression analysis indicated that the overall model was statistically significant, F ⫽ 8.58, df ⫽ 70, p⬍.001 (Table 4). Multivariate analysis showed that higher QOL scores were significantly associated with lower levels of stress, B ⫽ ⫺0.63,  ⫽ ⫺.29, p⬍.01. Furthermore, higher QOL scores were significantly associated with higher levels of coping, B ⫽ 19.91,  ⫽ .43, p⬍.001 (R 2 ⫽ .45; Adj. R 2 ⫽ .39). Table 4 represents the multiple regression model explaining scores reflecting QOL.
DISCUSSION Parental QOL A PGWBI score of 73–110 is described as positive wellbeing, 61–71 as moderate distress, and 0–60 as severe distress by MAPI Research Institute which developed the tool PGWBI.42 Studies using PGWBI for different healthy age groups indicated that the average score for 30–34 years old is 80.2 (SD ⫽ 16.4).43 In comparison, the scores of the parents in our study with an average of 64.07 ⫾ SD 17.15 on QOL are lower, indicating that the QOL of parents who care for a child with a tracheostomy at home are lower than an average healthy person. According to the classification of
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Dupuy, a score of 64 indicates that the parents are in moderate distress (61–71). Most study participants were women, mostly mothers. Mothers of healthy young children have many demands on their time and energy. Mothers who have a child with a tracheostomy have additional burdens related to the care of a child with special needs that may explain their poorer QOL. Hartnick and colleagues found that caregiver burden correlated with the cost associated with the care, which in turn correlated with the severity of illness.44 In addition, the emotional well-being of the caregivers was associated with the burden of care but not associated with physical well-being of the caregivers. Hopkins and colleagues reported similar findings about financial burden and relationship problems in marriage.12 These results are in agreement with reports of financial burden in families who care for children with special health care needs (the Center for Child and Adolescent Health).45 One-fourth (27 percent) of the participants reported an annual income of less than $40,000. Hopkins and colleagues also reported adverse effects on all aspects of their QOL, including sleep, relationships, social life, and ability to work (n ⫽ 26, mean age of the child ⫽ five years).12 The QOL of the caregivers was associated with the QOL of their child with a tracheostomy. Awareness about care burden may be used by NICU nurses to help prepare parents for what to expect after hospital discharge. Preparation for care burden may facilitate parents making lifestyle modifications to decrease caregiver burden. Examples are one parent giving up employment to stay home, hiring part-time help, or accepting help from volunteers.
Duration of Tracheostomy and QOL Responses from the demographic inventory included information on the duration of tracheostomy. The mean duration of tracheostomy was 18.22 months (SD ⫽ 9.59), and the parents cared for the children at home for a mean duration of more than 12 months. Correlational analysis indicated that the duration of tracheostomy was not significantly correlated with QOL scores r(69) ⫽ ⫺.03. Some of the previous studies reported otherwise. Awadella and colleagues reported higher QOL scores in parents of children with diabetes compared with matched controls in the population, which could be attributed to the disease-related education and training received by parents and the comfort level gained over time.34 Similarly, Sullivan and colleagues found lower baseline QOL scores for British parents prior to G-tube placement in their children with failure-to-thrive, and these parents displayed higher QOL scores at 12 months post G-tube placement as indicated by increased mental health scores (9.88 at six months postop to 17.72 at 12 months, p⫽.015).33 The parents might have developed a level of competence in performing the care activities and might have developed/accepted a new normal for their families, which positively influenced their QOL. The parents spent less time on feeding their child and noticed statistically and clinically significant weight gain in
the children, which can be attributed to the increased nutritional intake. This longitudinal study also described less hospital admissions and respiratory illnesses in these children.
Stress, Coping, and QOL Correlational statistics revealed that many factors impact the QOL. Mean stress scores as measured by the FILE were directly and significantly correlated with QOL (r ⫽ ⫺.46, p⬍.01), in presence of coping (r ⫽ ⫺.33, p⬍.01), whereas coping in the absence of stress displayed a stronger relationship with QOL (r ⫽ .57, p⬍.01). In multiple regression analyses, stress (p⫽.008) and coping (p⫽.000) were significantly related to the QOL scores. As stress level scores increased, the QOL scores decreased, and an increase in coping scores was found to increase QOL scores. It may be that stress and coping are predictive of the parental caregiver’s QOL, and coping is more significantly related to QOL than stress. These findings further represent the predictive model of the theoretical framework that guided this study. In the Double ABCX model, piled-up stress in the presence of coping can result in adaptation or maladaptation, and coping plays a major role in adaptation, indicating the level of their QOL. The relationships between the variables were also examined. It was found that the duration of tracheostomy had no influence on coping, stress, or QOL, whereas coping and stress did influence each other as well as QOL. The results from this study are consistent with the findings of other researchers. Coping behaviors were found to have a significant relationship with the well-being of the parents in a study that examined the effect of family resources and coping on well-being of school-age children with asthma.46 In this descriptive cross-sectional study involving white and African American parents, family resources, household income, and educational level were positively related to parental wellbeing in both the groups in this study. Staab and colleagues also found that the most important factor in explaining variance of health-related QOL (HRQOL) in parents of children with CF was the coping style, whereas disease severity of the child and subjective health perception did not show any influence.27 It is imperative that nurses are aware of the factors that influence stress, coping, and QOL in parental caregivers so that they can provide appropriate education for care and guidance to resources prior to discharging the child with a tracheostomy. With the redesign of NICUs into single rooms, parents have more opportunities to participate in their child’s care than in the past with traditional, open, crowded nurseries. This places the NICU nurses in a unique position to prepare these parents and empower them so that they feel confident and comfortable to take care of their child at home. Our findings are that only one-half of the parents felt well prepared to care for their child at home, and only 43 percent of parents reported feeling confident to care for their child at home. NICU nurses can assess the parents’ readiness for discharge from the parents’ perspective. Nurses can identify
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community resources such as parent support networks and respite care services.
LIMITATIONS Correlational studies do not show cause and effect but rather relationships, if any, between two or more variables.47 Therefore, a specific cause-and-effect relationship can neither be established in this study nor can predictions be made accurately based on this single study. Most participants in this study were recruited from an online support group website, and therefore sample selection bias is a limitation of this study. The sample size for the study was 71, and thus the sample size may not be adequate to generalize the findings. Lack of or partial participation may have been caused by factors such as length of the survey, multiple questionnaires, and/or lack of time. This finding concurs with the arguments of Polit and Beck that lengthy tools are less efficient than shorter self-report surveys.47 Children aged one to 36 months have high developmental needs, and this, along with the tracheostomy and other health-related care needs, may have further limited participation of the parental caregivers who may have wanted to participate but just did not have the time to do so. It is a point of concern that data collected primarily from an online support group showed that these parents were under a moderate amount of stress as evidenced by lower QOL scores. Several factors such as personality trait of the caregiver, physical health, emotional health, social situation, marital relationships, or the health status of the other parent or siblings can affect the QOL scores on a given day and could have contributed to this lower score. The QOL status of other similar parental caregivers who do not participate in an online support group is worthy of investigation. In addition, it would be interesting to compare stress, coping, and QOL in parental caregivers of a child with a tracheostomy with parents of healthy children of the same age. The results primarily reflect the QOL of parents, particularly mothers who care for infants and toddlers with a tracheostomy. Comparing stress, coping, and QOL in parental caregivers of a child in different age groups and in diverse ethnic and socioeconomic groups may provide further understanding of the challenges these parents face. Inclusion of more male parental caregivers may also elicit a very different perspective than found in this study. Thus, future research designs should target male parental caregivers through creative recruitment activities. This study also did not include QOL of the children themselves or their siblings. It is not known how siblings of these children cope with stress and whether or not their QOL is similar to others in their age groups that do not have a sibling with a tracheostomy. It would be interesting to identify the QOL of the children with a tracheostomy, their stress levels, and their ability to cope. Although it is known from literature that QOL of children with chronic illnesses impacts the QOL of their caregivers, it is not known whether the QOL of the child with a tracheostomy also affects the QOL of his or her parents.28 Lastly, further research is warranted to develop and
test specific interventions to help parental caregivers reduce stress and develop appropriate coping mechanisms associated with caring for a child with a tracheostomy.
CONCLUSION Seventy-one parents who care for children with a tracheostomy at home completed a survey either online or via hard copy to report their QOL. Parents who care for children with a tracheostomy at home had poor QOL scores indicating moderate distress. In addition, it was found that lower stress scores and better coping scores were related to better QOL. Nurses can prepare parents to care for their child with a tracheostomy by providing adequate training on care topics, along with ways to deal with stress as well as coping skills.
ACKNOWLEDGMENTS The dissertation was supported by funding from Epsilon Phi Chapter of Sigma Theta Tau, Inc., the American Association of Critical Care Nurses (A ACN), and the Southeastern Pennsylvania Chapter (SEPA) of the AACN. This study was conducted with the approval of the institutional review boards of Duquesne University, Pittsburgh, PA and Nemours/Alfred I. duPont Hospital for Children, Wilmington, DE. Rachel Joseph would like to acknowledge the guidance and support of Dr. Linda Goodfellow, chairperson of her dissertation committee at Duquesne University School of Nursing, as well as Dr. Lynn Simko and Dr. Hamilton McCubbin. In addition, she thanks her statistician, Dr. William Bannon, for statistical support throughout the project.
REFERENCES 1. National Library of Medicine, National Institutes of Health. Premature babies. http://www.nlm.nih.gov/medlineplus/prematurebabies.html. Accessed March 22, 2013. 2. March of Dimes Foundation. PeriStats. http://www.marchofdimes.com/ peristats/Peristats.aspx. Accessed February 3, 2014. 3. Agency for Healthcare Research and Quality. Statistics on hospital stays. http://hcupnet.ahrq.gov/HCUPnet.jsp?Id=6F3B8F3A0A992F7D& Form=SelDXPR&JS=&Action=%3E%3ENext%3E%3E&_DXPR= PreRunALLDXPR. Accessed February 3, 2014. 4. Illinois Home Care & Hospice Council. Home Health Care: A More CostEffective Approach to Medicaid in Illinois. Springfield, IL: Illinois Home Care & Hospice Council; December, 2010. http://www.ilhomecare .org/documents/IHHCRecommendations-121010KR_000.pdf. Accessed March 22, 2013. 5. Aradine CR. Young children with long-term tracheostomies: health and development. West J Nurs Res. 1983;5(2):115-127. http://dx.doi.org/ 10.1177/019394598300500202 6. Butnaru CS, Colreavy MP, Ayari S, Froehlich P. Tracheotomy in children: evolution in indications. Int J Pediatr Otorhinolaryngol. 2006;70(1):115119. http://dx.doi.org/10.1016/j.ijporl.2005.05.028. 7. Lindman JP, Morgan CE, Schewienfurth J. Tracheostomy. http:// emedicine.medscape.com/article/865068-overview. Updated November 27, 2013. Accessed February 3, 2014.
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8. Fiske E. Effective strategies to prepare infants and families for home tracheostomy care. Adv Neonatal Care. 2004;4(1):42-53. http://dx.doi .org/10.1016/j.adnc.2003.11.011. 9. Winkler MF, Ross VM, Piamjariyakul U, Gajewski B, Smith CE. Technology dependence in home care: impact on patients and their family caregivers. Nutr Clin Pract. 2006;21(6):544-556. 10. Kirk S, Glendinning C. Developing services to support parents caring for a technology-dependent child at home. Child Care Health Dev. 2004;30(3):209-218. 11. Kirk S, Glendinning C, Callery P. Parent or nurse? The experience of being the parent of a technology-dependent child. J Adv Nurs. 2005;51(5):456-464. 12. Hopkins C, Whetstone S, Foster T, Blaney S, Morrison G. The impact of pediatric tracheostomy on both patient and parent. Int J Pediatr Otorhinolaryngol. 2009;73(1):15-20. http://dx.doi.org/10.1016/j .ijporl.2008.09.010. 13. McCubbin HI, Patterson JM. Family stress and adaptation to crises: a double ABCX model of family behavior. Paper presented at: Annual Meeting of the National Council on Family Relations, October 13-17, 1981; Milwaukee, WI. 14. McCubbin HI, Thompson AI, McCubbin MA. Family Measures: Stress, Coping and Resiliency. Honolulu, HI: Kamehameha Schools; 2001. 15. Tsai S, Wang H. The relationship between caregiver’s strain and social support among mothers with intellectually disabled children. J Clin Nurs. 2009;18(4):539-548. 16. Boling W. The health of chronically ill children: lessons learned from assessing family caregiver quality of life. Fam Community Health. 2005;28(2):176-183. 17. Priddis L, Dunwoodie J, Balding E, Barrett A, Douglas T. Paternal experiences of their children’s diagnosis of cystic fibrosis following newborn screening diagnosis. Neonat Pediatr Child Health Nurs. 2010;13(2):4-10. 18. Quittner AL, Espelage DL, Opipari LC, Carter B, Eid N, Eigen H. Role strain in couples with and without a child with chronic illness: associations with marital satisfaction, intimacy, and daily mood. Health Psychol. 1998;17(2):112-124. 19. Priddis L, Dougall A, Balding E, Barrett A. Cystic fibrosis diagnosis: impact on mothers of affected Australian children. Neonatal, Paediatr Child Health Nurs. 2009;12(1):20-25. 20. Van den Tweel XW, Hatzmann J, Ensink E, et al. Quality of life of female caregivers of children with sickle cell disease: a survey. Haematologica. 2008;93(4):588-593. http://dx.doi.org/10.3324/haematol.11610. 21. Brummelte S, Grunau RE, Synnes AR, Whitfield MF, Thomas JP. Declining cognitive development from 8 to 18 months in preterm children predicts persisting higher parenting stress. Early Hum Dev. 2011;87(4):273-280. 22. Sullivan CF. Cyber support: empowering asthma caregivers. Pediatr Nurs. 2008;34(3):217-224. 23. Gray DE. Coping over time: the parents of children with autism. J Intellect Disabil Res. 2006;50(pt 12):970-976. 24. Upadhyaya GR, Havalappanavar NB. Stress in parents of the mentally challenged. J Indian Acad Appl Psychol. 2008;34(Special Issue):53-59. 25. Peterman AH, Cella D, Hesketh PJ, Savarese DMF, Rothrock N. Evaluation of health-related quality of life. http://www.uptodate .com/patients/content/topic.do?topicKey=~WxWWPaFIkUFTGL. Accessed January 16, 2012. 26. Boling W, Macrina DM, Clancy JP. The caregiver quality of life cystic fibrosis (CQOLCF) scale: modification and validation of an instrument to measure quality of life in cystic fibrosis family caregivers. Qual Life Res. 2003;12:1119-1126. 27. Staab D, Wenninger K, Gebert N, et al. Quality of life in patients with cystic fibrosis and their parents: what is important besides disease severity? Thorax. 1998;53:727-731.
28. Wong MG, Heriot SA. Parents of children with cystic fibrosis: how they hope, cope and despair. Child Care Health Dev. 2008;34(3):344-354. 29. Arafa MA, Zaher SR, El-Dowaty AA, Moneeb DE. Quality of life among parents of children with heart disease. Health Qual Life Outcomes. 2008;6:91. http://dx.doi.org/10.1186/1477-7525-6-91. Electronic version http://www.hqlo.com/content/6/1/91. Accessed March 26, 2013. 30. Goldbeck L, Melches J. The impact of the severity of disease and social disadvantage on quality of life in families with congenital cardiac disease. Cardiol Young. 2006;16(1):67-75. http://dx.doi.org/10.1017 /S1047951105002118. 31. Halterman JS, Yoos HL, Conn KM, et al. The impact of childhood asthma on parental quality of life. J Asthma. 2004;41(6):645-653. 32. Cohen MH. The technology-dependent child and the socially marginalized family: a provisional framework. Qual Health Res. 1999; 9(5):654-668. 33. Sullivan PB, Juszczak E, Bachlet AM, et al. Impact of gastrostomy tube feeding on the quality of life of carers of children with cerebral palsy. Dev Med Child Neurol. 2004;46(12):796-800. http://dx.doi .org/10.1111/j.1469-8749.2004.tb00443.x. 34. Awadalla AW, Ohaeri JU, Al-Awadi SA, Tawfiq AM. Diabetes mellitus patients’ family caregivers’ subjective quality of life. J Natl Med Assoc. 2006;98(5):727-736. 35. Green SB. How many subjects does it take to do a regression analysis? Multivar Behav Res. 1991;26(3):499-510. 36. Institute for Digital Research and Education, University of California Los Angeles. G*Power data analysis examples: power analysis for twogroup independent sample t-test. http://www.ats.ucla.edu/stat/ gpower/indepsamps.htm. Accessed March 5, 2011. 37. Cohen J. Statistical Power Analysis for the Behavioral Sciences. 2nd ed. Hillsdale, NJ: Lawrence Erlbaum Associates; 1988. 38. McCubbin HI, Patterson J, Wilson L. Family inventory of life events (FILE). 1981. In: McCubbin HI, Thompson AI, McCubbin MA, eds. Family Assessment: Resiliency, Coping and Adaptation—Inventories for Research and Practice. Madison, WI: University of Wisconsin System; 1996:103-178. 39. McCubbin HI, Olson D, Larson A. Family crisis oriented personal scales (F-COPES). 1981. In McCubbin HI, Thompson AI, McCubbin MA, eds. Family Assessment: Resiliency, Coping and Adaptation—Inventories for Research and Practice. Madison, WI: University of Wisconsin System; 1996:455-507. 40. Dupuy HJ. Psychological General Well-Being Index (PGWBI). http:// www.proqolid.org/instruments/psychological_general_well_being_ index_pgwbi. Accessed January 15, 2010. 41. IBM Corp. IBM SPSS Statistics for Windows, Version 20.0. Armonk, NY: IBM Corp. 42. Chassany O, Dimenas E, Dubois D, Wu A. The Psychological General Well-Being Index (PGWBI) User Manual. Lyon, France: MAPI Research Institute; 2004. http://178.23.156.107:8085/Instruments_ files/USERS/pgwbi.pdf. Accessed February 4, 2014. 43. Grossi E, Groth N, Mosconi P, et al. Development and validation of the short version of the psychological general well-being index (PGWB-S). Health Qual Life Outcomes. 2006;4:88. 44. Hartnick CJ, Bissell C, Parsons SK. The impact of pediatric tracheotomy on parental caregiver burden and health status. Arch Otolaryngol Head Neck Surg. 2003;129(10):1065-1069. 45. Impact on the family: time, employment, finances, and physical and mental health. In: U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. The National Survey of Children with Special Health Care Needs Chartbook 2005-2006. Rockville, MD: U.S. Department of Health and Human Services; 2008.
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46. Lee C, Hwang F, Chen C, Chien L. The interrelationships among parenting stress and quality of life of the caregiver and preschool child with very low birth weight. Fam Community Health. 2009;32(3): 228-237. 47. Polit DF, Beck CT. eds. Nursing Research. 8th ed. Philadelphia, PA: Wolters Kluwer/Lippincott Williams & Wilkins; 2008.
About the Authors Rachel A. Joseph, PhD, CCRN, is a NICU nurse with more than 30 years of experience that includes expertise in education, quality, and research. This article includes primarily the results of her dissertation study. She is a CCRN-certified neonatal nurse and BLS instructor and has published in peer-reviewed journals. Linda M. Goodfellow, PhD, RN, is the Dissertation Committee chair for Rachel Joseph, founding director at the Center for Nursing Research, Duquesne University School of Nursing, and associate professor with tenure at Duquesne University School of Nursing, Pittsburgh, PA. She is also a legal nurse consultant and has widely presented and published. Lynn M. Simko, PhD, CCRN, MPH, is an associate professor at Duquesne University, a CCRN-certified nurse, and a BLS instructor and is active in research. She is also a manuscript reviewer for peerreviewed journals and has widely published. For further information, please contact: Rachel A. Joseph, PhD, CCRN Duquesne University Pittsburgh, PA E-mail: [email protected]
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Disclosure The authors have no relevant financial interest or affiliations with any commercial interests related to the subjects discussed within this article. No commercial support or sponsorship was provided for this educational activity.
ABSTRACT Purpose: To explore the relationships between stress, coping, duration of tracheostomy, and quality of life (QOL) of parental caregivers who care for a child with a tracheostomy at home. Design: A cross-sectional correlational design was used to study parents who care for a child with a tracheostomy at home. Family Inventory of Life Events, Family Crisis Oriented Personal Evaluation Scale, and Psychological General Well-Being Index were used to measure stress, coping, and QOL, respectively. Data were collected using both online and paper-pencil format. Main Outcome Variable: quality of life. Results: Parents who care for their infants/toddlers with a tracheostomy at home were found to be in moderate distress. Mean age of the participants was 33 years (N ⫽ 71), and the average duration of the child’s tracheotomy was 18.22 (SD ⫽ 9.59) months. Multivariate analysis showed a significant inverse relationship between QOL and stress. QOL was significantly associated with coping, B ⫽ 19.91,  ⫽ .43, p⬍.001. Keywords: parental caregivers; quality of life; QOL; stress; coping
A
Accepted for publication July 2013.
BOUT ONE IN EIGHT INFANTS ARE BORN preterm in the United States.1,2
Modern neonatal intensive care units (NICUs) along with medical and technological innovations facilitate the survival of these preterm infants. Some of these infants require prolonged ventilation for survival and undergo a tracheostomy to facilitate transition to home environment for continued care. About 1,500 tracheostomies are performed annually in infants, and most of them are the preterm infants who survive in the NICU.3 Cost containment, surge in home care business, and technological revolution hasten early discharge of these infants to home.4 Prior to discharge, these parents are trained to care for their infant, maintain equipment, and provide cardiopulmonary resuscitation if needed. Although home nursing care may
be initially available, these services are short lived, forcing parents to assume total care of their child with a tracheostomy. The parents who care for a child with a tracheostomy at home are often frightened and may experience a considerable amount of stress. Thus, their quality of life (QOL) may be altered.5
BACKGROUND A tracheostomy is a common elective procedure in children who cannot remain extubated, suffer trauma, have neurological and severe maxillofacial anomalies, and had undergone unsuccessful surgical procedures such as a cricoid split.6,7 A tracheostomy allows the infant to grow and develop, improve facial expression and phonation, learn sucking and swallowing, enhance
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comfort, facilitate teething, and be cared for in their home environment while on mechanical ventilation.7 The stress of caring for a child with a tracheostomy with varying levels of assistive technology can be time consuming and challenging. 8 Accidental extubation, delay in recognizing and clearing of secretions, or disconnection and malfunction of the ventilator can be life threatening and frightening to the parents, so much so that parents often take turns sleeping for fear of an impending death.7 These families live around the routines imposed on them by the technology as they assume the dual role of parent and that of a nurse.9,10 The extra skills required to operate the equipment, coordination of the complex care between multiple specialty groups, vulnerability in the physical condition of the child, and care needs to be met by professional staff add stress to the parents who care for their children with a tracheostomy at home.8,10 In addition, transport needs for follow-up, social isolation, and financial and emotional burden may add additional stress on these parents.8,10 The physical and emotional aspects of caregiving can affect the parents’ health and well-being, sleep patterns, relationships, and family life.11,12 Relinquishing their careers to devote more time for caregiving may also increase their financial burden, causing stress and reducing QOL.8,11
REVIEW OF LITERATURE The Double ABCX model of family stress and adaptation was the conceptual framework used to guide this study.13,14 This middle-range theory describes a precrisis and a postcrisis phase. If a family perceives that it can manage the normative and nonnormative stress of life with the available resources, a crisis can be avoided. However, when crises occur, stress can “pile up” and may impact the meaning the family ascribes to them, which can affect the level of adaptation the family achieves in spite of additional resources. This adaptation can be on a continuum between bonadaptation and maladaptation. A family that adapts well is assumed to have better QOL. Thus, the Double ABCX model includes factors such as A (stressor), B (resources), C (the meaning the family ascribes to the stressor), in the precrisis phase, X (crisis), aA (pileup of stressors), bB (additional resources), cC (the meaning the family ascribes to the new situation) which helps with coping, and xX (adaptation) which constitutes the postcrisis phase.13,14 All the variables in this study can be explained in the context of this framework.
Stress Several researchers have studied stress in the context of caregivers of chronically ill children and children dependent on technology, including a tracheostomy. Caregiver stress from lack of knowledge, inadequate caregiving training, inadequate help from health care professionals, minimal family support, disruption of household routines, and forced social isolation have been described in the literature.15 Role conflict, daily living activities, conflicting social values, uncertain
moral order of their lives, and an attempt to seek normality to obtain stability at home have also been explored.9,10 In addition, anger, disbelief, fear, anxiety, pain, confusion, conflict, feelings of inability to cope, and feelings of “emotional rollercoaster” have been expressed by parents.16,17 The responsibility of care can be frightening to parents.5 Assuming responsibility of care, fear of lack of competence, and the unpredictable outcomes of their child are known sources of stress in parental caregivers. 8,12 Fear of death or deterioration18,19 ; depressive mood, increase in daily activities, lack of happiness, and guilt 20 ; and behavior problems in school-age children, socioeconomic status, hours of care giving each day, and lack of social support system15 were described as determinants of stress. Brummelte and colleagues reported higher levels of stress in parents of preterm infants (p⬍.02) than in parents of full-term infants.21
Coping An individual’s response to a given stressor may vary. Coping plays a central role in adaptation to stressful life events and may be the link between stress and QOL. Support groups have been found to help caregivers of children with illnesses such as asthma cope.22 A social support system plays a significant role in helping parents to cope at an optimum level. Conversely, Gray found that parents of children with autism coped through their religious faith and other emotionfocused strategies rather than relying on social support. 23 Mothers (N ⫽ 628) of children who are mentally challenged were found to cope using religion-faith and denial-blame.24 Some parents who care for their children with a tracheostomy use an online social support group (http://www.tracheostomy.com) to share care-related topics, ask for advice, and update each other on their experiences.
Quality of Life QOL is a complex multidimensional concept that lacks clear definition. According to Peterman and colleagues, QOL comprises global life satisfaction, good health, adequate housing, employment, personal and family safety, education, and leisure.25 QOL can be subjective when it is about feeling good and being satisfied with things in general. It can be objective when it is about fulfilling the societal and cultural demands for material wealth, social status, and physical well-being.25 Priddis and colleagues found that fathers of children with cystic fibrosis (CF) adjusted to their child’s illness by assuming the protector role while they hid their emotions to stay strong.17 Severity of illness in children was found to be a major determinant of QOL in parental caregivers of children with CF, 26–28 cardiac disease, 29,30 and asthma.31 However, Staab and colleagues did not find any relationship between the severity of illness and parental caregiver QOL (r ⫽ .08) in parents of school-age children with CF but did find a significant relationship between the greater number of hours spent on treatment
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and the QOL of caregivers (r ⫽ ⫺.30; p⬍0.01).27 Arafa and colleagues found that additional contributing factors such as type of heart disease, age of the child, multiple children, financial situation, and comorbid conditions affect the QOL of a caregiver.29 Goldbeck and Melches argue that the severity of cardiac disease leads to social disadvantages limiting activity and social activity of the child while requiring constant supervision, thereby affecting caregiver QOL negatively.30 Halterman and colleagues stated that an increase in symptom-free days improved QOL in parents of a child with asthma.31 Fear of death or deterioration, role strain, parenting stress, and lack of recreational time were significantly associated with poor QOL in parents of patients with CF.18 Other factors that impact QOL include social risk factors,29,30 complex social issues,20,32 and increased duration of illness in the child.26,33,34 A review of the literature to date did not reveal any studies that have explored the relationships between stress, coping, duration of tracheostomy, and QOL of parental caregivers who care for their children with a tracheostomy at home.
PURPOSE OF THE STUDY The purpose of this study was to examine the relationships between QOL, stress, coping, and duration of a tracheostomy in parental caregivers who care for their children (aged one month to 36 months) with a tracheostomy at home. The research questions were as follows: (1) What is the QOL of parental caregivers of children with a tracheostomy aged one month to 36 months as measured by the Psychological General Well-Being Index (PGWBI)? (2) What is the relationship between the duration of a tracheostomy and the QOL of parental caregivers? (3) What are the relationships between caregiver stress, coping, duration of a tracheostomy, and QOL of the parental caregivers?
METHODS A cross-sectional correlational descriptive design was used to study the QOL of parental caregivers who care for their child with a tracheostomy at home. Approval was obtained from the Institutional Review Boards of Duquesne University and Nemours/Alfred I. duPont Hospital for Children. Data were collected via both online and paper-pencil survey methods. Parents of children with a tracheostomy aged one to 36 months who were cared for at home were eligible to participate. A convenience sampling method was used to recruit parents who were part of a social networking support group at http://www.tracheostomy.com and also those who responded to fliers posted at a pulmonology clinic in a pediatric hospital in the Northeastern part of the United States.
Power Analysis A power analysis was performed a priori and evaluated both the overall significance of the multiple regression model and the unique contribution of individual predictors. 35
Initially, it was performed using G*Power36 software based on the estimated effect size, power, significance level, and number of predictors and was later verified with a statistical consultant. The significance level for both analyses were set at p⫽.05. Medium effect sizes were postulated in keeping with Cohen’s37 recommendations for multiple regression analysis (i.e., both f 2 values ⫽ .15). In addition, power was set at .80, meaning there would be an 80 percent probability of reaching statistical significance if the predictors had an effect in the population. The dependent variable was QOL, and the independent variables were stress (1 score), coping (1 score), and duration of tracheostomy (1 score). Results from the power analysis showed that 77 cases would be necessary to evaluate the overall model, and 55 cases would be necessary to evaluate individual predictors. The largest N was chosen so that the multiple regression analysis would be sensitive to the least powerful comparison.
Protocol After approval was obtained from the appropriate institutional review boards, an announcement describing the study along with the survey link using SurveyMonkey was posted on the website http://www.tracheostomy.com with permission from the web administrator. Because participation in the study was voluntary, a formal consent was not obtained; submitting the completed questionnaires indicated consent. Fliers with the survey link were posted at a pulmonology clinic, and hard copy survey packets with a self-addressed stamped envelope were made available. The respiratory therapist in the pulmonology clinic was responsible for distributing the survey. The parents were instructed to mail the completed survey back to the researcher. If both parents of the child with a tracheostomy were interested in participating in the study, they were asked to complete the surveys (online or paper-pencil) separately without discussing the questions or their responses. Participants were assured anonymity.
Sample and Inclusion/Exclusion Criteria Parents, stepparents, or adoptive parents who were fluent in English and were involved in the care of at least one child with a tracheostomy at home were included in the study. Foster parents and parents of older children (older than three years of age) with a tracheostomy were excluded from participation in the study. Biological fathers or mothers who did not live with the child or participate in the care of the child were also excluded from the study.
Measures Family Inventory of Life Events and Changes (FILE). Caregiver stress in the context of this study was defined as the subjective assessment of the life situation that was perceived as stressful by the parental caregivers and was measured by using the tool FILE.38 This is a 71-item self-report instrument that evaluates the “pileup” of normative and
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nonnormative life events experienced by the parents during the previous 12 months on a dichotomous scale by answering yes or no. The score can range from zero to 71, and higher scores means higher stress to the person who completed the tool. Cronbach’s ␣ was .81, and test–retest reliability was .77.11 The FILE takes approximately ten to 15 minutes to complete. The Cronbach’s ␣ for FILE in this study was .85, indicating good internal consistency. Family Crisis Oriented Personal Evaluation Scale (F-COPES). Coping is an attempt to survive the context of the problem or emotion and was measured by using the F-COPES scale.39 F-COPES is a 30-item self-report scale that identifies problem-solving strategies on a Likert scale ranging from 1 to 5, with 1 indicating strongly disagree and 5 strongly agree. The total score can range from 30 to 150, and content and construct validity has been established. Cronbach’s ␣ was .87 (N ⫽ 2,582) and test–retest reliability was .81 (N ⫽ 116).33 Higher scores indicate better coping, and the F-COPES takes about five minutes to complete. The internal consistency for this tool in this study (Cronbach’s ␣ ⫽ .73) was acceptable.
TABLE 1
■
Demographic Characteristics of the Sample (N ⫽ 71) No. (%)
Parent Mother/grandmother Father
Demographic Data Form. The researchers’ generated demographic data form was used to describe the population under study. Parent-specific information such as gender, age, education, income, employment status, marital status, race, ethnicity, insurance status, and the duration of care from other support personnel was collected. Information including age of the child with a tracheostomy, comorbid conditions, siblings, attendance in day care, and duration of tracheostomy was also collected.
67 (95) 4 (5)
Education High school
5 (7)
Some college
24 (34)
College graduate
25 (35)
Graduate school
17 (24)
Marital status Married Single/divorced/living with a partner
62 (87) 9 (13)
Employment Yes
35 (49)
No
36 (51)
Ethnicity White
Psychological General Well-Being Index (PGWBI). QOL was defined as the sum total of the mental and physical health and well-being of parents caring for a child with a tracheostomy and was measured by using the PGWBI.40 It is a 22-item unidimensional questionnaire that assesses intrapersonal affective or emotional states reflecting general well-being or distress and takes approximately ten minutes to complete. Scores of each item range from 0 to 5 with a possible global score of 0–110. Scores of 0–60 are reflective of “severe distress,” 61–72 are reflective of “moderate distress,” and scores of 73–110 are reflective of “positive well-being.” Cronbach’s ␣ coefficient has been found to range from .80 to .92. The Cronbach’s ␣ for PGWBI was found to be .94 in this study.
Mean ⫾ SD 33 ⫾ 9.58 (y)
Mean age of caregiver
63 (89)
African American
5 (7)
American Indian/Latino
3 (4)
Religion Christian Jewish Atheist/No faith
50 (70) 1 (1) 20 (29)
Age of child with tracheostomy
21.6 ⫾ 10.0 (mo)
Age at procedure
3.24 ⫾ 2.3 (mo)
Annual income (US$)
67,800 ⫾30,800
on the independent sociodemographic variables such as age, gender, marital status, educational level, and annual income (Table 1). In addition, a series of bivariate tests were used to identify which, if any, of the independent variables including duration of tracheostomy, caregiver stress, and caregiver coping were associated with the dependent variable, QOL, using a two-tailed test of significance with the p value set at ⬍.05. Multiple regression analysis was used to understand the effect of two or more variables on the global PGWBI scores used to measure QOL.
RESULTS
Data Analysis Data were uploaded into the IBM Statistical Package for the Social Sciences (SPSS) statistics for windows 20.0 Grad Pack.41 Data were coded, and a codebook was maintained. Normal distributions of scores were shown for the major variables, and the assumptions of linearity, collinearity, and homoscedasticity were met. Descriptive statistical analysis was conducted to describe the sample under study
One-hundred participants initiated the survey; however, only 71 completed all of the surveys including the four participants who completed the hard copy surveys. The average age of the child was 21.6 months (SD ⫽ 10), mean duration of tracheostomy was 18.22 months (SD ⫽ 9.59), and the mean duration of home care was more than 12 months (range of ⬍3 months to ⬎30 months). Approximately
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TABLE 2
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Descriptive Data Regarding Study-Dependent and Independent Variables (N ⫽ 71)
TABLE 4
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Multiple Regression Model Explaining Scores Reflecting Quality of Life (N ⫽ 71) SE B

0.60
5.24
.01
.91
Ethnicity (1 ⫽ White, 0 ⫽ Other)
4.97
5.51
.09
.90
Friend help (1 ⫽ Yes, 0 ⫽ No)
⫺0.58
3.62
⫺.02
.87
Smoking (1 ⫽ Yes, 0 ⫽ No)
⫺9.91
5.61
⫺.17
.08
Stress
⫺0.63
0.23
⫺.29
.008
19.91
5.03
.43
.000
Variable
N
Mean (SD)
Range
Scale Range
Variable
Duration of tracheostomy
71
18.22 (9.59)
1.00–35.00
NA
Caregiver coping
71
3.27 (0.37)
2.20–4.03
1.00–5.00
Marital status (1 ⫽ Married, 0 ⫽ Unmarried)
Caregiver stress
71
16.41 (7.78)
4.00–36.00
0.00–71.00
Quality of life
71
64.07 (17.15)
0.00–93.00
0.00–110.00
Note: Duration of tracheostomy was measured in months and obtained on the demographic data form. Caregiver coping was measured by the Family Crisis Oriented Personal Evaluation Scale (F-COPES), caregiver stress was measured by the Family Inventory of Life Events and Changes (FILE), and quality of life was measured by the Psychological General Well-Being Index (PGWBI).
50 percent of these children were on ventilator support either all the time or for at least a few hours every day. The detailed demographic data that include the participants’ role, employment status, education, religious affiliation, and the child’s gender and age are given in Table 1. More than half of the sample reported a level of education at the bachelor’s level or above (n ⫽ 52; 59 percent) and were employed outside the home (n ⫽ 35; 49 percent). Only about half of the participants (n ⫽ 41; 56.2 percent) reported feeling well prepared prior to their child’s discharge from the hospital. Similarly, about half of the study participants (n ⫽ 31; 43.1 percent) reported feeling very confident regarding caring for their child with a tracheostomy after discharge. All the study participants who provided full data for the caregiver stress (FILES), coping (F-COPES), duration of tracheostomy, and QOL (PGWBI) measures were eligible for inclusion in the final analyses (N ⫽ 71). The mean scores of the participants were 3.27 (maximum score of 5 that indicates good coping) on the coping measure and 16.41 on the stress measure (maximum score of 71 and the lower the score the lesser the stress). The mean score on the QOL measure was 64.07, which shows moderate distress in the participants.
TABLE 3
■
Relationships Between and Among the Variables Studied (N ⫽ 71)
Variable
1
3
4
1. Quality of life
— .05
⫺.07
⫺.06
⫺.03
—
.23
.25*
.19
—
.32** —
2. Age of caregiver 3. Child’s age 4. Age at procedure 5. Duration of tracheostomy 6. Coping 7. Stress *p⬍.05. **p⬍.01.
2
5
6
7
.57** ⫺.46** .02
.01
.95**
⫺.13
.14
.14
⫺.04
.00
—
⫺.08
.11
—
⫺.33** —
Coping
B
p
Note: Model. R2 ⫽ .45, Adj. R2 ⫽ .39, df ⫽ 70, F ⫽ 8.58, p⬍.001. Variables that indicate significance on bivariate analysis were included in multiple regressions along with independent variables. Higher quality of life scores were significantly associated with lower levels of stress (B ⫽ ⫺0.63,  ⫽ ⫺.29, p⬍.01) and higher levels of coping (B ⫽ 19.91,  ⫽ .43, p⬍.001).
Table 2 presents the major variables that were studied. All three measures also indicated acceptable psychometric properties. For example, a reliability analysis showed acceptable levels of internal consistency for the coping (Cronbach’s ␣ for F-COPES ⫽ .73), stress (Cronbach’s ␣ for FILE ⫽ .85), and QOL (Cronbach’s ␣ for PGWBI ⫽ .94) measures. Correlation analysis indicated that there was a significant positive relationship between QOL and caregiver coping, r(69) ⫽ .57, p⬍.01, and a significant negative relationship between QOL and stress, r (69) ⫽ ⫺.46, p⬍.01. Table 3 illustrates the relationships between these variables. Multiple regression analysis indicated that the overall model was statistically significant, F ⫽ 8.58, df ⫽ 70, p⬍.001 (Table 4). Multivariate analysis showed that higher QOL scores were significantly associated with lower levels of stress, B ⫽ ⫺0.63,  ⫽ ⫺.29, p⬍.01. Furthermore, higher QOL scores were significantly associated with higher levels of coping, B ⫽ 19.91,  ⫽ .43, p⬍.001 (R 2 ⫽ .45; Adj. R 2 ⫽ .39). Table 4 represents the multiple regression model explaining scores reflecting QOL.
DISCUSSION Parental QOL A PGWBI score of 73–110 is described as positive wellbeing, 61–71 as moderate distress, and 0–60 as severe distress by MAPI Research Institute which developed the tool PGWBI.42 Studies using PGWBI for different healthy age groups indicated that the average score for 30–34 years old is 80.2 (SD ⫽ 16.4).43 In comparison, the scores of the parents in our study with an average of 64.07 ⫾ SD 17.15 on QOL are lower, indicating that the QOL of parents who care for a child with a tracheostomy at home are lower than an average healthy person. According to the classification of
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Dupuy, a score of 64 indicates that the parents are in moderate distress (61–71). Most study participants were women, mostly mothers. Mothers of healthy young children have many demands on their time and energy. Mothers who have a child with a tracheostomy have additional burdens related to the care of a child with special needs that may explain their poorer QOL. Hartnick and colleagues found that caregiver burden correlated with the cost associated with the care, which in turn correlated with the severity of illness.44 In addition, the emotional well-being of the caregivers was associated with the burden of care but not associated with physical well-being of the caregivers. Hopkins and colleagues reported similar findings about financial burden and relationship problems in marriage.12 These results are in agreement with reports of financial burden in families who care for children with special health care needs (the Center for Child and Adolescent Health).45 One-fourth (27 percent) of the participants reported an annual income of less than $40,000. Hopkins and colleagues also reported adverse effects on all aspects of their QOL, including sleep, relationships, social life, and ability to work (n ⫽ 26, mean age of the child ⫽ five years).12 The QOL of the caregivers was associated with the QOL of their child with a tracheostomy. Awareness about care burden may be used by NICU nurses to help prepare parents for what to expect after hospital discharge. Preparation for care burden may facilitate parents making lifestyle modifications to decrease caregiver burden. Examples are one parent giving up employment to stay home, hiring part-time help, or accepting help from volunteers.
Duration of Tracheostomy and QOL Responses from the demographic inventory included information on the duration of tracheostomy. The mean duration of tracheostomy was 18.22 months (SD ⫽ 9.59), and the parents cared for the children at home for a mean duration of more than 12 months. Correlational analysis indicated that the duration of tracheostomy was not significantly correlated with QOL scores r(69) ⫽ ⫺.03. Some of the previous studies reported otherwise. Awadella and colleagues reported higher QOL scores in parents of children with diabetes compared with matched controls in the population, which could be attributed to the disease-related education and training received by parents and the comfort level gained over time.34 Similarly, Sullivan and colleagues found lower baseline QOL scores for British parents prior to G-tube placement in their children with failure-to-thrive, and these parents displayed higher QOL scores at 12 months post G-tube placement as indicated by increased mental health scores (9.88 at six months postop to 17.72 at 12 months, p⫽.015).33 The parents might have developed a level of competence in performing the care activities and might have developed/accepted a new normal for their families, which positively influenced their QOL. The parents spent less time on feeding their child and noticed statistically and clinically significant weight gain in
the children, which can be attributed to the increased nutritional intake. This longitudinal study also described less hospital admissions and respiratory illnesses in these children.
Stress, Coping, and QOL Correlational statistics revealed that many factors impact the QOL. Mean stress scores as measured by the FILE were directly and significantly correlated with QOL (r ⫽ ⫺.46, p⬍.01), in presence of coping (r ⫽ ⫺.33, p⬍.01), whereas coping in the absence of stress displayed a stronger relationship with QOL (r ⫽ .57, p⬍.01). In multiple regression analyses, stress (p⫽.008) and coping (p⫽.000) were significantly related to the QOL scores. As stress level scores increased, the QOL scores decreased, and an increase in coping scores was found to increase QOL scores. It may be that stress and coping are predictive of the parental caregiver’s QOL, and coping is more significantly related to QOL than stress. These findings further represent the predictive model of the theoretical framework that guided this study. In the Double ABCX model, piled-up stress in the presence of coping can result in adaptation or maladaptation, and coping plays a major role in adaptation, indicating the level of their QOL. The relationships between the variables were also examined. It was found that the duration of tracheostomy had no influence on coping, stress, or QOL, whereas coping and stress did influence each other as well as QOL. The results from this study are consistent with the findings of other researchers. Coping behaviors were found to have a significant relationship with the well-being of the parents in a study that examined the effect of family resources and coping on well-being of school-age children with asthma.46 In this descriptive cross-sectional study involving white and African American parents, family resources, household income, and educational level were positively related to parental wellbeing in both the groups in this study. Staab and colleagues also found that the most important factor in explaining variance of health-related QOL (HRQOL) in parents of children with CF was the coping style, whereas disease severity of the child and subjective health perception did not show any influence.27 It is imperative that nurses are aware of the factors that influence stress, coping, and QOL in parental caregivers so that they can provide appropriate education for care and guidance to resources prior to discharging the child with a tracheostomy. With the redesign of NICUs into single rooms, parents have more opportunities to participate in their child’s care than in the past with traditional, open, crowded nurseries. This places the NICU nurses in a unique position to prepare these parents and empower them so that they feel confident and comfortable to take care of their child at home. Our findings are that only one-half of the parents felt well prepared to care for their child at home, and only 43 percent of parents reported feeling confident to care for their child at home. NICU nurses can assess the parents’ readiness for discharge from the parents’ perspective. Nurses can identify
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community resources such as parent support networks and respite care services.
LIMITATIONS Correlational studies do not show cause and effect but rather relationships, if any, between two or more variables.47 Therefore, a specific cause-and-effect relationship can neither be established in this study nor can predictions be made accurately based on this single study. Most participants in this study were recruited from an online support group website, and therefore sample selection bias is a limitation of this study. The sample size for the study was 71, and thus the sample size may not be adequate to generalize the findings. Lack of or partial participation may have been caused by factors such as length of the survey, multiple questionnaires, and/or lack of time. This finding concurs with the arguments of Polit and Beck that lengthy tools are less efficient than shorter self-report surveys.47 Children aged one to 36 months have high developmental needs, and this, along with the tracheostomy and other health-related care needs, may have further limited participation of the parental caregivers who may have wanted to participate but just did not have the time to do so. It is a point of concern that data collected primarily from an online support group showed that these parents were under a moderate amount of stress as evidenced by lower QOL scores. Several factors such as personality trait of the caregiver, physical health, emotional health, social situation, marital relationships, or the health status of the other parent or siblings can affect the QOL scores on a given day and could have contributed to this lower score. The QOL status of other similar parental caregivers who do not participate in an online support group is worthy of investigation. In addition, it would be interesting to compare stress, coping, and QOL in parental caregivers of a child with a tracheostomy with parents of healthy children of the same age. The results primarily reflect the QOL of parents, particularly mothers who care for infants and toddlers with a tracheostomy. Comparing stress, coping, and QOL in parental caregivers of a child in different age groups and in diverse ethnic and socioeconomic groups may provide further understanding of the challenges these parents face. Inclusion of more male parental caregivers may also elicit a very different perspective than found in this study. Thus, future research designs should target male parental caregivers through creative recruitment activities. This study also did not include QOL of the children themselves or their siblings. It is not known how siblings of these children cope with stress and whether or not their QOL is similar to others in their age groups that do not have a sibling with a tracheostomy. It would be interesting to identify the QOL of the children with a tracheostomy, their stress levels, and their ability to cope. Although it is known from literature that QOL of children with chronic illnesses impacts the QOL of their caregivers, it is not known whether the QOL of the child with a tracheostomy also affects the QOL of his or her parents.28 Lastly, further research is warranted to develop and
test specific interventions to help parental caregivers reduce stress and develop appropriate coping mechanisms associated with caring for a child with a tracheostomy.
CONCLUSION Seventy-one parents who care for children with a tracheostomy at home completed a survey either online or via hard copy to report their QOL. Parents who care for children with a tracheostomy at home had poor QOL scores indicating moderate distress. In addition, it was found that lower stress scores and better coping scores were related to better QOL. Nurses can prepare parents to care for their child with a tracheostomy by providing adequate training on care topics, along with ways to deal with stress as well as coping skills.
ACKNOWLEDGMENTS The dissertation was supported by funding from Epsilon Phi Chapter of Sigma Theta Tau, Inc., the American Association of Critical Care Nurses (A ACN), and the Southeastern Pennsylvania Chapter (SEPA) of the AACN. This study was conducted with the approval of the institutional review boards of Duquesne University, Pittsburgh, PA and Nemours/Alfred I. duPont Hospital for Children, Wilmington, DE. Rachel Joseph would like to acknowledge the guidance and support of Dr. Linda Goodfellow, chairperson of her dissertation committee at Duquesne University School of Nursing, as well as Dr. Lynn Simko and Dr. Hamilton McCubbin. In addition, she thanks her statistician, Dr. William Bannon, for statistical support throughout the project.
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About the Authors Rachel A. Joseph, PhD, CCRN, is a NICU nurse with more than 30 years of experience that includes expertise in education, quality, and research. This article includes primarily the results of her dissertation study. She is a CCRN-certified neonatal nurse and BLS instructor and has published in peer-reviewed journals. Linda M. Goodfellow, PhD, RN, is the Dissertation Committee chair for Rachel Joseph, founding director at the Center for Nursing Research, Duquesne University School of Nursing, and associate professor with tenure at Duquesne University School of Nursing, Pittsburgh, PA. She is also a legal nurse consultant and has widely presented and published. Lynn M. Simko, PhD, CCRN, MPH, is an associate professor at Duquesne University, a CCRN-certified nurse, and a BLS instructor and is active in research. She is also a manuscript reviewer for peerreviewed journals and has widely published. For further information, please contact: Rachel A. Joseph, PhD, CCRN Duquesne University Pittsburgh, PA E-mail: [email protected]
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