Well-Being and Agency in Parents of Children With Congenital Heart Disease

Abstract

Background:

Parents of children having congenital heart diseases (CHDs) develop symptoms of depression, distress, anxiety, and hopelessness more frequently than parents of healthy children. Associated with the described symptoms, parents may experience a lack of control and disempowerment, which decreases the parent’s agency, a construct from development studies, and which may have negative consequences on adherence to treatment. The primary aim of this study was to assess the effect of medical treatment on well-being and agency in parents of children having CHDs, in Chile, and to compare it with reference values.

Methods:

Forty parents of children having CHDs (before surgery and before hospital discharge) and 115 parents of healthy children were surveyed. The following scales were applied to this population: the General Health Questionnaire, the Basic Psychological Needs Scales, the Self-Determination Scale, the Beck Hopelessness Scale, and a socioeconomic survey.

Results:

Children’s surgery decreased parents’ hopelessness (3.13 ± 0.35 and 2.18 ± 0.40, P = .04), and no significant differences were found in the remaining scales. Parents of children with CHDs scored significantly worse than parents of healthy children on the General Health Questionnaire (13.82 ± 1.03 and 9.21 ± 0.64, P = .001). This difference was not found using the others scales.

Conclusion:

Children’s surgery has a positive effect on parent’s hopelessness, but it does not have any impact on their well-being nor agency. Parents of children with CHD have a decreased well-being compared to parents of healthy children but have a similar level of agency. Socioeconomic level and gender may influence this association.

Keywords

comorbidity congenital heart disease ethics postoperative care quality of life

Introduction

Congenital heart disease (CHD) refers to a wide range of cardiac defects present at birth, from innocent murmurs to severe structural abnormalities. It is estimated that about 1% of children are born with a CHD, many of whom used to die during the first year of life.¹ However, due to improvements in health care, mortality has been reduced considerably in the last two decades, and it is estimated that 85% of these children now reach adulthood.²

Besides the effects on the child’s health, the uncertainty associated with the diagnosis of a CHD and the high demand for care that a child with CHD has can lead parents to develop symptoms of depression, distress, anxiety, and hopelessness^3

–8 more frequently than parents of healthy children.³ This occurs more often than with other chronic conditions, such as cystic fibrosis.⁹ However, an explanation of this phenomenon has not been proposed so far. Studies exploring risk factors for the development of these symptoms have yielded diverging results: low socioeconomic level,³ the severity of the CHD,⁶ and the parent being female, independent of the marital status^3,8 have been identified.

Associated with these symptoms, many parents of children with CHD perceive their situation as uncontrollable,⁴ and “mothers of these children attributed events to chance or luck and beyond their control.…”^7(p606) Although experiences of lack of control and disempowerment have been described more often in patients, they are also present in caregivers of children with chronic conditions, such as neurological degenerative diseases.¹⁰ Empowerment has been defined as “the ability to exercise meaningful choices,”¹¹ ^(p437) and it depends on two main determinants: an external factor, called social agreement, made up of resources and opportunities, and an internal factor denominated agency, which is defined as “the ability to act on behalf of what you value and have a reason to value.”¹² ^(p383) Agency is a relevant concept for development studies, a branch of economy and social sciences dealing with “beneficial societal change,”¹³ ^(p1) since this discipline aims at making assisted people not mere recipients of aid programs but engaged partners in their own development.¹⁴ Some conditions of agency have been described: the agent performs the activity or at least has a role in performing it; that this activity has an impact on the world; that the agent chooses the activity; and that the agent deliberates on the activity in light of his or her values, judging it as valuable for its own sake.¹⁵ This is not an all-or-nothing process but a gradual one in which people can exert more or less agency over their lives, according to their circumstances.

In the field of health care, it has been shown that the lack of agency affects recuperation because it has negative consequences not only on well-being, as some parents may feel overwhelmed when they face medical decisions,⁷ but also on the adherence to treatment.¹⁶ Hence, depression, distress, anxiety, and hopelessness are very severe issues because of the consequences not only for parental well-being but also for the child’s treatment.

In Latin America, there is a severe shortage of pediatric cardiac surgical teams, leading to a lack of appropriate medical treatment of children with CHD. The lack of health care providers makes this population highly vulnerable. To our knowledge, only one qualitative study has been conducted which explores the feelings and emotions of Latin American parents of children with CHD. In its conclusion it claimed, “The main feelings encountered during this time of crisis have been fear of death by heart disease, surgery and anaesthesia, guilt and powerlessness in the face of the different stages of treatment.”¹⁷ ^(p41)

The primary aim of this study was to assess the effect of medical treatment on well-being and agency in this population, to compare it with reference values, and to identify other factors that may be associated with parental well-being and agency. The hypothesis is that parents of children with CHD have a decreased well-being and agency compared to parents of healthy children. A second hypothesis is that medical treatment of their children has a positive effect on parent’s well-being and agency.

Materials and Methods

Study

A quantitative prospective longitudinal study was conducted that included two measurements over time for the study group and one measurement for a control group. The local institutional review board had approved this study before its implementation.

Population

Parents of children younger than 5 years of age receiving medical treatment for CHDs (parents of sick children [P-SC]) at the Catholic University Clinical Hospital in Santiago de Chile, one of three reference centers for pediatric cardiac surgeries in Chile, were contacted to participate in the study. Parents of healthy children (P-HC) were included as control group to obtain reference values. Only parents currently living with their children were included. Exclusion criteria were parents younger than 18 years old, illiterate, emergency surgery, and parents whose children died after surgery.

Procedures and Measures

After their children’s admission for cardiac surgery, but before the procedure, P-SC completed a selection of psychological self-report scales and a socioeconomic survey questionnaire. An informed consent form was signed beforehand. Only the psychological scales were reapplied before discharge from hospital. The same scales were applied to the control group (P-HC) after routine checkup with the pediatrician (Figure 1).

Figure 1.

Procedures and samples size. P-SC indicates parents of sick children; P-HC, parents of healthy children.

In order to assess well-being and agency, the following questionnaires were used: General Health Questionnaire (GHQ-12),¹⁸ the Basic Psychological Needs Scales (BPN),¹⁹ the Self-Determination Scale (SDS),²⁰ and the Beck Hopelessness Scale (BHS)²¹ (Table 1).

Table 1.

Description of Psychological Scales.

Questionnaire	Assessment	Range	Direction	Subscales	Spanish Version
General Health Questionnaire (GHQ-12)¹⁸	Nonsevere psychiatric symptoms in the general population	0-36	36 worst	- Wellbeing - Self-confidence	Humphreys²⁶
The Basic Psychological Needs Scales (BPN)¹⁹	Degree to which people feel basic psychological needs are satisfied in their life. Requirement for agency	15-75	75 best	- Autonomy - Competence - Relatedness	Domínguez²⁷
The Self-Determination Scale (SDS)²⁰	Degree to which people feel they are in control over their actions	10-50	50 best	- Control over emotions - Control over decisions
Beck Hopelessness Scale (BHS)²¹	Pessimism and the belief that problems cannot be solved	0-20	20 worst		Aguilar²⁸

Socioeconomic level (SEL), a relevant factor according to a previous study,³ was measured by a sample of questions from the survey regularly conducted by the Chilean Ministry of Social Development.²² The selected dimensions and indicators were age, marital status, education (literacy, highest degree obtained), work (employment, contract), health (insurance, perceived health status), and housing/neighborhood (number of people living in the house, social participation). These socioeconomic data were analyzed independently and also transformed into a dichotomous variable (poverty) according to the multidimensional poverty concept.²³

Severity of the child’s disease was registered according to RACHS-1 (Risk Adjustment for Congenital Heart Surgery score),²⁴ with expected mortalities ranging from 0.3% for group 1 to 40% for group 6.²⁵ Other measured variables included the child’s age, number of surgeries of the child, parental satisfaction with free time (1-10), and parental perception of own health status (1-7); the last variables may be relevant for variations in agency.²⁹

Statistical Analysis

The data were examined with analyses of variance, chi-square tests, and t tests, paired or unpaired according to the samples, and post hoc tests using the Bonferroni method. When the distribution did not pass normal distribution tests, the Kolmogorov-Smirnov test was performed.

Results

Data were collected from October 2013 to Mach 2014 on a consecutive basis. During that period of time, 102 pediatric patients underwent surgical treatment at our hospital. Eighteen children did not meet the inclusion criteria, and 26 were admitted during weekends or at night and their parents were not invited to participate because the researchers were not available. Of the 116 potential parents, the research team was not able to contact 22, and 94 P-SC were invited to participate. In total, 28 declined, 35 did not return the first survey, and 4 did not return the second survey (preoperative and before hospital discharge). The control group included 115 P-HC. Sample sizes are shown in Figure 1. The demographic characteristics of the participants are shown in Tables 2 and 3. The results of the psychological tests are shown in Table 4. Averages and standard deviations or percentages are presented.

Table 2.

Demographic Data.^a

	P-SC (n = 40)	P-HC (n = 115)
Age, years	32.15 ± 7.621	30.86 ± 0.642	P = .32
Gender (female)	26 (65%)	93 (80.87%)	P = .04
Marital status			P = .45
Married	20 (48.8%)	53 (46.09%)
Cohabitation	16 (39%)	42 (36.52%)
Separated	0	2 (1.74%)
Divorced	0	4 (3.48%)
Widowed	0	1 (0.87%)
Single	4 (9.8%)	13 (11.3%)
Educ. level			P = .56
Never	0	1 (0.87%)
Elementary	1 (2.4%)	0
Primary	3 (7.3%)	6 (5.22%)
Secondary	8 (19.5%)	23 (20%)
Secondary technical	13 (31.7%)	22 (19.13%)
Technical	6 (14.6%)	21 (18.26%)
Professional	8 (19.5%)	32 (27.83%)
Postgraduate	1 (2.4%)	10 (8.7%)
Poverty (yes)	20 (50%)	45 (39.13%)	P = .23

Abbreviations: P-SC, parents of sick children; P-HC, parents of healthy children.

^aMeans and standard deviations or number of answers and percentages.

Table 3.

Characteristics of Children’s Disease.^a

	Examples	n (%)
RACHS 1	Atrial septal defect surgery, patent ductus arteriosus surgery (>30 days), coarctation repair (>30 days)	2 (5)
RACHS 2	Ventricular septal defect repair, total repair of tetralogy of Fallot, Glenn shunt	10 (25)
RACHS 3	Ross procedure, mitral valve replacement, Fontan procedure, arterial switch	11 (27.5)
RACHS 4	Konno procedure, repair of truncus arteriosus	1 (2.5)
RACHS 5	Tricuspid valve repositioning for neonatal Ebstein anomaly (≤ 30 days), repair of truncus arteriosus and interrupted arch	0 (0)
RACHS 6	Norwood, Damus-Kaye-Stansel procedure	6 (15)
First surgery		19 (47.5)
Previous surgeries		21 (52.5)

^aNumber of cases and percentages.

Table 4.

Overall Results: Well-Being and Agency.^a

	P-HC (n = 115)	P-SC Preop (n = 40)	P-SC Postop (n = 40)
BPN	66.20 ± 0.71	66.18 ± 1.35	64.80 ± 1.46
Autonomy	22.07 ± 0.30	22.30 ± 0.48	21.30 ± 0.61
Relatedness	21.86 ± 0.30	22.43 ± 0.51	21.63 ± 0.52
Competence	22.14 ± 0.24	21.70 ± 0.50	21.63 ± 0.59
SDS	40.39 ± 0.76	41.71 ± 1.29	41.90 ± 1.35
Decisions	18.97 ± 0.50	20.34 ± 0.77	20.03 ± 0.80
Emotions	21.42 ± 0.38	21.37 ± 0.75	21.87 ± 0.73
Hopelessness	2.58 ± 0.21	3.13 ± 0.35	2.18 ± 0.40
GHQ	9.21 ± 0.64	13.82 ± 1.03	12.44 ± 1.00
Well-being	5.46 ± 0.39	9.64 ± 0.69	9.18 ± 0.69
Confidence	43.75 ± 0.31	4.18 ± 0.58	3.28 ± 0.51

Abbreviations: P-SC, parents of sick children; P-HC, parents of healthy children; BPN, basic psychological needs; SDS, Self-Determination Scale; GHQ, General Health Questionnaire; preop, preoperatively; postop, postoperatively.

^aMeans and standard deviations. Statistically significant difference described in results.

Table 5.

Well-Being and Agency of Parents of Children With Congenital Heart Diseases by Gender and by Socioeconomic Level.^a

By Gender
	Mothers Pre	Fathers Pre	Mothers Post	Fathers Post
BPN	64.92 ± 1.85	68.50 ± 1.65	62.96 ± 2.11	68.71 ± 1.27
Autonomy	21.65 ± 0.69	23.50 ± 0.36	20.24 ± 0.82	23.36 ± 0.67
Relatedness	22.35 ± 0.70	22.57 ± 0.72	21.52 ± 0.76	22.00 ± 0.61
Competence	20.92 ± 0.70	23.14 ± 0.43	20.80 ± 0.83	23.36 ± 0.48
SDS	39.17 ± 1.74	46.07 ± 1.16	40.04 ± 1.81	45.50 ± 1.79
Decisions	19.17 ± 1.10	22.36 ± 0.66	18.96 ± 1.13	22.07 ± 0.89
Emotions	20.00 ± 1.04	23.71 ± 0.64	21.08 ± 0.98	23.43 ± 1.05
Hopelessness	3.58 ± 0.45	2.23 ± 0.48	2.50 ± 0.53	1.64 ± 0.63
GHQ	14.80 ± 1.32	12.07 ± 1.60	13.58 ± 1.33	10.50 ± 1.50
Well-being	10.24 ± 0.89	8.57 ± 1.04	10.04 ± 0.91	7.79 ± 1.06
Confidence	4.56 ± 0.73	3.50 ± 0.96	3.58 ± 0.72	2.71 ± 0.73
By socioeconomic level
	P-SC Poor	P-SC Non-poor	P-HC Poor	P-HC Non-poor
BPN	68.35 ± 1.41	64.00 ± 2.23	67.21 ± 0.82	64.62 ± 1.23
Autonomy	23.40 ± 0.41	21.20 ± 0.81	22.43 ± 0.34	21.51 ± 0.56
Relatedness	22.90 ± 0.57	21.95 ± 0.85	22.21 ± 0.37	21.31 ± 0.52
Competence	22.50 ± 0.50	20.85 ± 0.84	22.37 ± 0.31	21.78 ± 0.38
SDS	44.47 ± 1.16	38.95 ± 2.15	41.30 ± 0.95	38.95 ± 1.24
Decisions	22.16 ± 0.70	18.53 ± 1.25	19.47 ± 0.65	18.18 ± 0.76
Emotions	22.32 ± 0.88	20.42 ± 1.20	21.83 ± 0.44	20.77 ± 0.68
Hopelessness	2.65 ± 0.50	3.63 ± 0.48	2.24 ± 0.25	3.12 ± 0.36
GHQ	13.35 ± 1.31	14.32 ± 1.63	7.88 ± 0.75	11.30 ± 1.08
Well-being	9.90 ± 0.92	9.37 ± 1.05	4.72 ± 0.47	6.61 ± 0.66
Confidence	3.45 ± 0.61	4.95 ± 0.99	3.16 ± 0.35	4.68 ± 0.55

Abbreviations: P-SC, parents of sick children; P-HC, parents of healthy children; BPN, basic psychological needs; SDS, Self-Determination Scale; GHQ, General Health Questionnaire.

^aMeans and standard deviations. Statistically significant difference described in results.

Disease, Well-Being, and Agency

Children’s disease was associated with lower well-being. The P-SC scored significantly worse than P-HC on GHQ-12 and its subscale well-being (P = .001 and P = 0, respectively). No difference was found among the study groups in the other applied scales, namely, in the BHS, BPN, and SDS. Hence, an association between CHD and decreased agency was not shown. Eight parents, four in each group, had hopelessness values higher than 8, which is associated with severe depression. All of them were referred to psychiatric consultation to confirm diagnosis and start treatment, if required.

Effect of Medical Treatment

Children’s surgery decreased their parents’ hopelessness (P = .04). No significant differences were found in the remaining scales (BPN, SDS, and GHQ-12).

Gender, Well-Being, and Agency

Fathers of healthy children showed similar values in all the selected scales compared to mothers of healthy children. In contrast, in the P-SC group, male parents showed higher perceived autonomy and competence (subscales of the BPN) than female parents before (P = .03, and P = .04, respectively) and after (P = .02 and P = .04, respectively) surgery. Fathers also scored better than mothers in the SDS and its subscales (control over decisions and control over emotions) before surgery (P = .02, P = .04, and P = .03, respectively), but no significant difference was found in this scale after surgery (Table 4).

Poverty, Well-Being, and Agency

In the P-HC group, poverty was associated with worse values on the GHQ-12 scale (P = .008) and both of its subscales, namely, well-being (P = .02) and confidence (P = .02). Before surgery, poor P-SC scored worse than nonpoor P-SC in many scales assessing agency, namely, autonomy (P = .02), SDS (P = .03), and control over decisions (P = .02). After surgical procedure, only the differences in the control over decisions scale (P = .02) between those groups persisted.

Discussion

As many other studies have shown, parents of children with CHD showed lower well-being compared to parents of healthy children.³ These findings confirm one part of the first hypothesis that parents of children with CHD have a decreased well-being compared to parents of healthy children and that this association is affected by SEL and gender. Nevertheless, the present findings did not support the second part of this hypothesis, namely, that P-SC would also show lower agency values than P-HC, since such differences were not found by means of the selected scales.

As was commented, studies exploring risk factors for low well-being have yielded diverging results. One study reports that low SEL is a risk factor for increased anxiety and depression,³ but these results were challenged by Uzark and Jones.⁴ In our study, we did find an association between lower well-being and SEL. As it was the case for Spijkerboer et al³⁰ and Brosig,³¹ we did not find a correlation between well-being and severity of illness. However, in contrast to Brosig,³¹ our results showed a statistically significant difference for well-being according to parental gender, as Lawoko and Soares³ and Franich-Ray et al⁸ did.

Full evidence supporting the hypothesis regarding agency was not found. This could possibly be explained by an inappropriate selection of scales or a too small sample size. However, the pattern of the results permits some interesting insights: Significant differences in well-being (GHQ-12 and its subscales) were found when parents had one burden (diseases or poverty), but variations in agency (BPN and SDS) were found when more than one condition was present (diseases and poverty, and likely disease and female gender). These results echo Menahem et al’s findings,⁷ showing that mothers of children with CHDs do not feel in “control.” This phenomenon could be related to mothers being more attached to their children or to gender issues in Latin American countries, but more research has to be done in order to solve this question. Is well-being more sensitive to external stressors than agency? Remarkably, all the different groups showed the same scores with regard to relatedness, which is known to be a powerful tool for coping with adverse situations.³² More research has to be performed in order to support this preliminary result. Meanwhile, health care providers should pay attention to parental well-being when their children are sick. Furthermore, special care should be taken with those having a second burden, such as poverty or gender issues.

The scales used to test the second hypothesis concerning the effect of medical treatment on parents’ well-being only showed an improvement in the hopelessness scale, without any variation in the remaining scales. There was a small nonsignificant difference in the GHQ-12, suggesting an improvement in their well-being and confidence. These findings might be influenced by their previous personal experiences (first surgery vs multiple surgeries), but the present sample size was too small to perform a subgroup analysis.

The relationships between illness, poverty, gender, well-being, and agency seem to be complex in nature. Although the present findings suggest that this is a relevant issue, more research has to be performed in order to understand possible variations and causal relationships.

Strengths and Limitations

To our knowledge, the present study is the first in assessing the well-being of parents of children with CHD, in a Latin American country. The cultural variations between this context and those in which previous studies were carried out may produce relevant differences in people’s feelings and behavior that should be taken into account and make these results nonapplicable to other contexts. Illiteracy, for instance, could be deemed a relevant factor in compromising parent’s agency. In this study, it was not examined since its prevalence in Chile is extremely low and it would be difficult to include illiterate participants to make a conclusion with enough power.²⁶ Nevertheless, illiteracy could be surveyed as a relevant variable in other Latin American countries. The fact that this was a single-center study, the small sample size, the short time frame, and the limited availability of validated scales in Spanish can be seen as the most relevant limitations.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Abbreviations and Acronyms

References

Moller

Taubert

Allen

Clark

Lauer

. Cardiovascular health and disease in children: current status. A Special Writing Group from the Task Force on Children a Youth, American Heart Association. Circulation. 1994;89(2):923–930.

Bhat

Sahn

. Congenital heart disease never goes away, even when it has been “treated”: the adult with congenital heart disease. Curr Opin Pediatr. 2004;16(5):500–507.

Lawoko

Soares

JJF

. Distress and hopelessness among parents of children with congenital heart disease, parents of children with other diseases, and parents of healthy children. J Psychosom Res. 2002;52(4):193–208.

Uzark

Jones

. Parenting stress and children with heart disease. J Pediatr Health Care. 2003;17(4):163–168.

Wray

Sensky

. Psychological functioning in parents of children undergoing elective cardiac surgery. Cardiol Young. 2004;14(2):131–139.

Solberg

Gronning Dale

Holmstrom

Eskedal

Landlot

Vollrath

. Long-Term symptoms of depression and anxiety in mothers of infants with congenital heart defects. J Pediatr Psychol. 2011;36(2):179–187.

Menahem

Poulakis

Prior

. Children subjected to cardiac surgery for congenital heart disease. Part 2 – Parental emotional experiences. Interact Cardiovasc Thorac Surg. 2008;7(4):605–608.

Franich-Ray

Bright

Anderson

. Trauma reactions in mothers and fathers after their infant’s cardiac surgery. J Pediatr Psychol. 2013;38(5):494–505.

Goldberg

Morris

Simmons

Fowler

Levison

. Chronic illness in infancy and parenting stress: a comparison of three groups of parents. J Pediatr Psychol. 1990;15(3):347–358.

10.

Gibson

. The process of empowerment in mothers of chronically ill children. J Adv Nurs. 1995;21(6):1201–1210.

11.

Kabeer

. Resources, agency, and achievements: reflections on the measurement of women’s empowerment. Dev Change. 1999;30(3):435–464.

12.

Ibrahim

Alkire

. Agency and empowerment: a proposal for internationally comparable indicators. Oxford Dev Stud. 2007;35(4):379–403.

13.

Crocker

. Ethics of Global Development. New York, NY: Cambridge University Press; 2008.

14.

Alkire

. Subjective quantitative studies of human agency. Soc Indicat Res. 2005;74:217–260.

15.

Drydyk

. Empowerment, agency, and power. J Global Ethics. 2013;9(3):249–262.

16.

Williams

Teixeira

Carraça

Resnicow

Physical Wellness, Health Care and Personal Autonomy. In: Chirkov

Ryan

Seldon

. Human Autonomy in Cross-Cultural Context, Perspectives on the Psychology of Agency, Freedom, and Well-Being. New York, NY: Springer; 2011: 133–162.

17.

Salgado

Lamy

Nina

Melo

Lamy Filo

Nina

. Pediatric cardiac surgery under the parents view: a qualitative study. Rev Bras Cir Cardiovasc. 2011;26(1):36–42.

18.

Goldberg

Williams

. User’s Guide to the General Health Questionnaire. London: NFER-Nelson Publishing Co.; 1998.

19.

Gillet

Rosnet

Vallerand

. Développement d’une échelle de satisfaction des besoins fondamentaux en contexte sportif. Can J Behav Sci. 2008;40(4):230–237.

20.

Sheldon

Deci

. The Self-Detennination Scale (Unpublished manuscript). Rochester, NY: University of Rochester; 1993.

21.

Beck

Weissman

. The measurement of pessimism: the hopelessness scale. J Consult Clin Psychol. 1974;42(6):861–865

22.

CASEN. Encuesta CASEN 2011. Ministerio de Desarrollo Social, Gobierno de Chile. Web site. http://observatorio.ministeriodesarrollosocial.gob.cl/casen_cuestionario.php. Accessed November, 2015.

23.

Apablaza

Yalonetzky

. Chronic Multidimensional Poverty or Multidimensional Chronic Deprivation. OPHI Research in Progress. 34a 2012. Oxford Poverty & Human Development Initiative, University of Oxford. Web site. www.ophi.org.uk/resources/ophi-research-in-progress/. Accessed November, 2015.

24.

Jenkins

Newburger

Lock

Davis

Coffman

Iezzoni

. In-hospital mortality for surgical repair of congenital heart defects: preliminary observations of variation by hospital caseload. Pediatrics. 2002;95(3):323–330.

25.

Boethig

Jenkins

Hecker

Thies

Breymann

. The RACHS-1 risk categories reflect mortality and length of hospital stay in a large German pediatric cardiac surgery population. Eur J Cardiothorac Surg. 2004;26(1):12–17.

26.

Humphreys

Ibáñez

Fullerton

Acuña

Florenzano

Marchandon

. Validación preliminar en Chile de una versión abreviada del Cuestionario General de Salud de Goldberg (GHQ-12). Presented in: III Chilean Congress of Neurosciences and Psychiatry and XLVI Meeting of the Chilean Society of Neurology, Psychiatry and Neurosurgery. Santiago, October 16th-19th, 1991.

27.

Domínguez

Martín

Martín-Albo

Núñez

León

. Translation and validation of the Spanish version of the “Échelle de Satisfacción des Besoins Psychologiques” in the sports context. Span J Psychol. 2010;13(2):1010–1020.

28.

Aguilar

Hidalgo

Cano

López

Campillo

Herández

. Estudio prospectivo de la desesperanza en pacientes psicóticos de inicio: características psicométricas de la escala de desesperanza de Beck en este grupo. Anales de Psiquiatría. 1995;11(4):121–125.

29.

Pillai

Alkire

. Measuring Individual Agency or Empowerment: A Study in Kerala. Thiruvananthapuram, Kerala, India: Centre for Development Studies, Thiruvananthapuram, Kerala, India; 2007.

30.

Spijkerboer

Helbing

Bogers

AJJC

van Domburg

Verhulst

Utens

EMWJ

. Long-term psychological distress, and styles of coping, in parents of children and adolescents who underwent invasive treatment for congenital disease. Cardiol Young. 2007;17(6):638–645.

31.

Brosig

Whitstone

Frommelt

Frisbee

Leuthner

. Psychological distress in parents of children with severe congenital heart disease: the impact of prenatal versus postnatal diagnosis. J Perinatol. 2007;27(11):687–692.

32.

Chirkov

Ryan

Sheldon

. Human Autonomy in Cross-Cultural Context: Perspectives on the Psychology of Agency, Freedom and Well-Being. New York, NY: Springer; 2011.