Method
Domain | Search terms | |
---|---|---|
S | Sample | (Family OR parent* OR mother OR father OR mum OR dad OR carer OR caregiver OR famili* OR maternal OR paternal) AND (child* OR adolescen* OR p*ediatric OR infant* OR f*etus OR offspring OR son OR daughter OR baby OR babies OR newborn OR toddler) |
PI | Phenomenon of Interest | Congenital heart disease* OR congenital heart defect OR heart defect* OR single ventricle |
D | Design |
*Design type was not specified as we wanted to include all qualitative research designs
|
E | Evaluation | Adjust* OR adapt* OR cope OR coping OR manage* OR deal OR endure OR withstand |
R | Research type | Qualitative |
Results
Reference and country | Research aims | Participant characteristics | Child characteristics | Data collection method/ Method of analysis | Main findings/themes | |
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1 | Wei et al. (2017) USA | To describe parents’ perceptions of healthcare providers’ actions when their child is diagnosed with CHD and undergoes heart surgery | 10 mothers 3 fathers Age: < 20 = 1, 20–29 = 6, 30–39 = 5, 40–49 = 1 | 10 children (9 boys, 1 girl) < 1 y.o = 7, 1–2 y.o = 2, 5 y.o = 1 Atrial septal defect = 1 Ventricular septal defect = 4 Atrial ventricular septal defect = 1 Tetralogy of Fallot = 3 Pulmonary stenosis = 1 | Interviews/Directed content analysis | Healthcare providers play an imperative role in helping parents understand and adjust to their child’s ongoing medical conditions, the effective ways of doing which are to include them in their child’s treatment and validated their roles as parents by incorporating them in their child’s daily hospital care. |
2 | Nakazuru et al. (2017) Japan | To examine the stress and coping of mothers whose infants needed CHD surgery and to identify the factors that influenced maternal coping | 11 mothers aged 30–41, (mean = 36) | 5 boys, 6 girls ≧ 1 month, ≦ 6 years Atrial septal defect = 3 Atrial ventricular septal defect = 5 Tetralogy of Fallot = 1 Atrial-ventricular block = 1 Double outlet right ventricle = 1 | Semi-structured interviews/Qualitative content analysis | 5 factors that influenced Japanese mothers’ coping: the diagnosis event, the number of symptoms of CHD, the anticipated number of surgeries, the presence of chromosomal abnormalities, and the infant’s age. And further, our subjects, Japanese mothers, reported that they held back emotions and evidence of their anxiety. The coping of mothers began when they first received the diagnosis and changed as the surgery date approached. Japanese mothers tried to prepare for surgery without a reliable schedule for surgery and without enough educational preparation. They embraced their high levels of anxiety but dealt with surgery by trusting the health care team. |
3 | Golfenshtein et al. (2017) USA | (1) To investigate coping mechanisms of mothers whose infant with complex CHD is admitted in the CICU, and (2) to explore the acceptability and feasibility of mindfulness as a potential stress-reduction intervention for these mothers. | 14 mothers | 14 children (11 boys 3 girls) 11–63 days old (median = 19) Single ventricle = 10 Bi-ventricle = 4 | Focus groups/Qualitative content analysis | Mothers use both passive and active coping mechanisms deal with stress. The active coping strategies include seeking social support, focusing and doing things for their baby, and positively reprising optimistic scenarios. The passive strategies include denial and distraction, which were used by all mothers. Most mothers also use emotion regulation focused coping, rather than problem solving focused coping, as they feel that there are only few things they could do for their baby in the CICU setting. |
4 | McKechnie et al. (2016) USA | The twofold purpose of this study was to (a) explore and qualitatively describe parents’ caregiving motivation to manage maternal–fetal and infant health care and (b) examine potential links between parents’ motivation to manage health care and their symptoms of distress subsequent to a fetal diagnosis and after-birth treatment of the infant’s CCHD. | 6 mothers aged 23–34 (mean = 30) 6 fathers aged 24–35 (mean = 31) | 6 children Hypoplastic left heart, coarctation of aorta, transposition of the great arteries, and tetrology of Fallot | Semi-structured interviews/Content Analysis | Based on parents’ descriptions, three categories of the motivation to manage health care were identified and included efforts (a) to determine expectations of health care providers, (b) to reconcile illness- and non-illness-related care, and (c) to express agency as a parent. Although variations in this motivation were found among parents over time, the same three categories were identified in parents’ narratives during pregnancy with a fetal diagnosis and after birth with an infant requiring intervention. |
5 | Meakins et al. (2015) Canada | The purpose of this exploratory study was to address the following research question: Is the parenting process among parents of children with HLHS characterized by exaggerated vigilant parental action, and if so, how does this influence parental response? The intent was to differentiate the varying intensities of vigilant parental action. | 17 fathers, aged 27–50 (mean = 33.7), 24 mothers aged 22–48 (mean = 32.8) | 12 boys, 12 girls Children’s ages ranged from 2–60 months (mean = 27.9 months) | Data from 2 original grounded theory studies including 55 interviews from 41 parents/Directed secondary thematic content analysis | Parental response to caring for a child with HLHS was characterized by both vigilant and exaggerated vigilant parental actions. Health professionals taught parents to vigilantly attend to their baby’s complex care requirements, which involved skills such as feeding, weighing, administering medications and oxygen; monitoring all aspects of the baby’s health; and taking action based on subtle changes. There was evidence that vigilant parental actions were exaggerated at times, with parents focusing on the child’s care and monitoring at the expense of other aspects of their life. |
6 | McKechnie et al. (2015) USA | The purpose of the study reported here was to address this gap in the theoretical and empirical literature by examining how parenting develops after a major fetal anomaly diagnosis. | 25 pregnant women aged 18–46 (mean = 28) 12 men aged 19–52 (mean = 30) | 15 female foetus, 9 male, 2 unknown. Fetal diagnoses included hypoplastic left and right heart syndromes, tetralogy of Fallot, double outlet right ventricle, double inlet left ventricle, coarctation of the aorta. | Interviews/Grounded dimensional analysis | Findings revealed that preparing heart and mind was a dynamic and nonlinear process. Fetal and future child health information, experiences of loss, and social interactions influenced the preparing process. These influencing conditions triggered turning points, described as realizing a different perspective. Expectant parents explained that turning points led them to develop, amend, and anticipate certain strategies for preparing emotionally and cognitively for becoming parents. These strategies included efforts to proceed in service of the child, to address external needs, and to integrate experiences with the normative approach to pregnancy. |
7 | Kosta et al. (2015) Australia | The purpose of this study was to explore parental experiences of their infant’s hospitalization for cardiac surgery and to identify factors that may be targeted in the future to alleviate sources of parental distress. The research questions were: (1) What did parents find difficult? (2) What would they have liked to be different? and (3) What did they find helpful during their hospital experience? | 63 fathers, (mean age = 35) 91 mothers, (mean age = 32) | 43 boys, 48 girls. Coarctation of the aorta = 16, hypoplastic left heart syndrome = 14, ventricular septal defect = 11, transposition of the great arteries = 12, tetralogy of fallot/pulmonary atresia with ventricular septal defect = 9, transposition intact ventricular septum = 7, interrupted aortic arch = 5, total anomalous pulmonary venous drainage = 3, tricuspid atresia = 1, other = 5. | Telephone or face to face interviews/Thematic analysis | Parents reported a range of difficulties from dealing with their baby’s unfolding illness, surgery and recovery to the structural and systemic issues associated with the broader context of their experiences. In an effort to be near their baby, parents struggled to obtain the necessities for daily living at the hospital and negotiate transitions between their hospital and home lives throughout the admission. Domains parents identified for change included the availability of facilities and resources and the quantity and quality of information and emotional support. Parents reported relationships with hospital staff as the most common source of support during this challenging time. |
8 | Sira et al. (2014) USA | The purpose of this study was to: a) identify existing coping strategies in mothers who have a child diagnosed with CHD based on three coping patterns (I, maintaining family integration and optimism; II, maintaining self-esteem and psychological stability; III, understanding the medical situation); b) evaluate the role of spirituality in maternal coping; and c) investigate Internet-mediated support in maternal coping. | 175 mothers (3 fathers were excluded from the analysis) | 114 boys 61 girls | Open ended questions on a survey/Content analysis | Understanding the medical situation and communication with other parents was the most used coping pattern among study participants, while maintaining self-esteem and psychological stability was the least utilized pattern. |
9 | Bruce et al. (2014) Sweden | The purpose of this study was to illuminate the meanings of support as disclosed by mothers of children with congenital heart defects. | 10 mothers Mean age 38 years | 10 Children aged 3–12 years Anomalous pulmonary venous return, aortic and mitral valve insufficiency, atrial septal defect, atrioventricular septal defect, coarctation of the aorta, discrete subaortic stenosis, double outlet right ventricle, hypoplastic left heart syndrome, single ventricle heart defect, tetralogy of Fallot, and ventricular septal defect. | Narrative interviews/ Phenomenological- hermeneutic method | The comprehensive understanding of mothers’ lived experiences of support emerged as the experiences of receiving good support, receiving “poor support,” and absence of support. |
10 | Rempel et al. (2013) Canada | Our aim was to generate evidence to inform clinical practice with parents of young children with HLHS based on the perspectives of both parents and grandparents using a recent treatment cohort. The research question was: What is the process of parenting young children with HLHS from the time of diagnosis through the survival of the first two surgeries and survival or anticipation of the third surgery? | 15 mothers 10 fathers 17 grandmothers 11 grandfathers | 15 children Aged 6 months–4.5 years | Interviews/Constructivist grounded theory | A process of Parenting under Pressure emerged that was characterized by four overlapping and re-emerging phases: (1) realizing and adjusting to the inconceivable; (2) growing increasingly attached; (3) watching for and accommodating the unexpected; and (4) encountering new challenges. |
11 | Harvey et al. (2013) USA | The purpose of this qualitative descriptive study was to explore the lived and recalled experiences of mothers of infants with moderate to severe CHD who were diagnosed post-natally and needed heart surgery prior to their first birthday. | 8 mothers aged 27–39 | 8 children aged 1–4 Cor triatriatrium and partial anomalous pulmonary venous return, 3 transposition of the great arteries, pulmonary atresia and VSD, VSD and congestive heart failure,2 tetralogy of fallot with pulmonary atresia. | Journal entries and survey by email/Colaizzi’s steps to analysis of phenomenological data | Data analysis of the journal entries revealed six major themes during the time period of the days before surgery, the day of surgery and days after surgery: 1) Feeling Intense Fluctuating Emotion, 2) Navigating the Medical World, 3) Dealing with the Unknown, 4) Facing the Possibility of My Baby Dying, 5) Finding Meaning and Spiritual Connection, and 6) Mothering Through It All. These themes frequently occurred together and were woven throughout the descriptions of the mother’s experiences. |
12 | Cantwell-Bartl and Tibballs (2013) Australia | To evaluate the psychosocial status of mothers and fathers of infants with hypoplastic left heart syndrome while in the PICU. | 16 mothers 13 fathers | 16 children aged 1–19 | Semi-structured face to face narrative interviews/Thematic analysis | All parents reported multiple stresses which commenced with their infant’s diagnosis and endured throughout their infant’s time in PICU. Of 11 parents whose infants were diagnosed with hypoplastic left heart syndrome postbirth, six of seven mothers had acute stress disorder and one mother had posttraumatic stress disorder, and of four fathers, two fathers had acute stress disorder and one father had posttraumatic stress disorder. Parents also experienced losses. Many parents were marginalized from their infant’s care by the environment of PICU. Fifty percent of mothers experienced difficulties with parental-infant bonding. Ten parents (34%) began the process of adaptation to their infant’s hypoplastic left heart syndrome and were assisted by the support and sensitivity of staff or had discovered other resources. |
13 | Rempel et al. (2012) Canada | The purpose of this study was to conceptualize the needs of parents of young children with hypoplastic left heart syndrome (HLHS) to provide a theoretical framework to inform the development of future parent interventions. Specific research questions included (1) what are the common experiences and needs of parents of young children with HLHS? (2) How can these experiences and needs be synthesized to optimize translation of evidence for health care professionals? and (3) How can the resulting conceptualization inform future interventions? | 15 mothers 10 fathers | 15 children 6 months to 4.5 years all with hypoplastic left heart syndrome | 53 previously conducted interviews, and conceptual memos written by the researchers/Secondary analysis of grounded theory data | Persistent stress and uncertainty characterized parents’ and grandparents’ accounts. Parents understood the life-threatening nature of HLHS by knowing a child who died or by their own child nearly dying. Parents hoped for the best while simultaneously acknowledging the worst-case scenario. Despite their child’s uncertain future, many parents felt lucky or grateful, especially in comparison to others, and described their personal growth through parenting a child with HLHS. Grandparents’ “birds-eye” view of their adult child’s experiences corroborated parents’ accounts and provided additional insights. |
14 | Rempel et al. (2012) Canada | Research Question 1: What is the process of family management related to the dimensions of the FMSF in families of infants with HLHS who underwent the early era Norwood procedure in comparison to parents of children who underwent the later era Sano procedure? Research Question 2: How does family management change over time from the initial diagnosis through the early period of home care? | 24 mothers 17 fathers. Mean age = 33.7 | 12 boys: mean age = 23.2 months 12 girls: mean age = 32.8 months | 55 previously conducted interviews/Secondary thematic content analysis | The process of family management that emerged in this study began with the diagnosis of the baby’s HLHS, included the baby’s survival of the first surgery, and continued until going home with baby. Each of these time periods was characterized by one family management style more than the others and differences between the early era (Norwood) and late era (Sano) cohorts were evident when particular dimensions of the family management styles were considered. The key finding of this study was that parents demonstrated an intense, dynamic, and transforming process of family management from the diagnosis stage through to the baby surviving the first of three surgeries and going home. The parents whose babies were treated in the era that had improved survival rates had a more positive view of their child’s illness and therefore showed more thriving family characteristics than the parents whose babies were in the early treatment era. |
15 | McKechnie and Pridham (2012) USA | The purpose of this theoretically guided qualitative inquiry was to examine parents’ experiences in terms of prebirth caregiving motivations following a prenatal fetal CCHD diagnosis reported retrospectively 1 to 3 months following birth. | 13 mothers, 3 fathers Aged 21–39 years | 14 children. All had multiple diagnoses, including hypoplastic left heart syndrome, tetrology of Fallot, and other serious aortic and valve defects. | Semi structured interviews/Directed content analysis. | The prenatal diagnosis impacted all aspects of the caregiving system. The motivation to become a caregiver appeared to activate the caregiving system as a whole, to reach the primary goal of protecting, nurturing, and comforting the offspring. Beginning before birth and continuing throughout the first year of life, parents sought to protect, nurture, and comfort their offspring in various ways. However, after receiving a prenatal diagnosis of a CCHD, parents in this sample vividly recalled directing significant energy toward preparing heart and mind, which involved their varied emotions, thoughts, and states of being. |
16 | Rempel et al. (2009)a Canada | To examine the process of parenting a child with hypoplastic left heart syndrome who had survived the Norwood surgical approach. The specific research question is “How do mothers and fathers manage their worry associated with uncertain outcomes for their child with hypoplastic left heart syndrome who has survived through advanced technology?” | 9 mothers, aged 22–48 mean 34 years 7 fathers, aged 30–50, mean 36 years | 9 children: 3 boys, 6 girls aged 2 months to 5 years All with hypoplastic left heart syndrome | Interviews/Constructivist grounded theory | Parents used normalization in the context of uncertainty regarding the ongoing survival of their child. Parents described their underweight children as being on their own growth curve, and viewed their developmental progress, however delayed, as reason for celebration, as they had been prepared for their child to die. |
17 | Rempel and Harrison (2007)a Canada | To describe the parenting experience of mothers and fathers whose child with HLHS underwent treatment that included a series of high-risk surgeries starting with the Norwood surgical procedure soon after birth. | 9 mothers, aged 22–48 mean 34 years 7 fathers, aged 30–50, mean 36 years | 9 children: 3 boys, 6 girls aged 2 months to 5 years All with hypoplastic left heart syndrome | Unstructured interactive interviews, face to face and phone based/Constructivist grounded theory | The mothers and fathers in this study exemplified extraordinary parenting. Their children with HLHS were survivors of advancing surgical technology and a learning experience for many health care professionals, who therefore were not in a position to provide parents with direction for care. |
18 | Lan et al. (2007) Taiwan | To investigate the essence of the experience of mothers during the decision-making process when facing their less than three-year-old child undergoing heart surgery due to congenital heart disease (CHD). | 9 mothers Aged 27–39, mean 32 years | 9 children: 5 female, 4 male 6 tetralogy of fallot, 3 ventricular septal defect (1 also transposition of the great arteries and atrial septal defect) | Interviews/Colaizzi’s Phemomenological Analysis | The essence of the maternal experience themes during the decision-making process included (i) understanding the surgery step by step, (ii) role pressure, (iii) constructing care-taking ability, (iv) endeavouring to maintain family functioning while preparing for surgery and (v) deliberate consideration to make the correct decision. |
19 | Leuthner et al. (2003) USA | To examine the impact of an abnormal fetal echocardiogram (echo) on expectant parents’ experience of pregnancy. We hypothesized that the fetal echo marked a critical point of emotional response, coping and decision making, and that we would observe differences in the way men and women respond to the information and experience provided by this technology. | 9 mothers 7 fathers Aged 28–36 years | 11 pregnancies at 16–34 weeks gestation at time of fetal ECG. 2 complex single ventricle, congenital heart block and cardiomyopathy, transposition of the great arteries, truncus arteriosis, TAPVR, Epstein’s anomaly, Hypoplastic left heart syndrome. | Focus groups/Thematic content analysis | The women expressed strong emotions of guilt, fear and sadness or hopelessness. They coped by attaching and bonding to the fetus, and were realistic about the future. The women began grieving at the time of the fetal echo. The men experienced emotions of anger and anxiety. They coped by remaining optimistic, and focused on supporting their wives. Men grieved after the birth of the baby. The fetal echo was felt to be beneficial and not harmful by the parents. The fetal echo led to significant changes in the couples’ perceptions of themselves and their relationships. Clinicians performing fetal imaging must be aware of parental affective responses and coping mechanisms in order to provide the required psychological support. |
20 | Kendall et al. (2003) UK | To obtain the views of their parents about the need for, and shape of, services for rehabilitation. | 17 parents | 19 children aged 5–18 | Interviews/Framework analysis | Parents would welcome more help and support from health professionals to enable them to manage more effectively the condition with their children. Particular areas of concern relate to the information they receive about the condition; communication between themselves and health professionals; establishing safe levels of activity; and managing the condition at school. |
21 | Gantt (2002) USA | To study the effect of congenital heart disease (CHD), a potentially life-threatening chronic illness, on the mother–daughter relationship. | 11 mothers | 11 daughters | Unstructured interviews/Content analysis | Normalizing in the face of chronic illness was the overriding theme of the study. Two subthemes related to normalizing arose from the data. “It’s no big deal” was found to best describe how most mothers and their daughters with heart disease viewed their lives and relationships. One other subtheme, “Sometimes it’s a very big deal,” was described by those mothers and daughters who could not, due to ongoing health problems, normalize their lives. Relationships with family as well as age, severity of illness, and developmental stage, were seen as mediators of normalizing in the lives of the participants. |
22 | Gudmundsdottir et al. (1996) USA | Exploratory study, the broad purpose of which was to examine the impact of CHD on the parent-adolescent dyad during adolescence. | 7 mothers 1 father | 8 children (3 girls, 5 boys) Age at interview 13–25 | Semi-structured interviews/Grounded theory | There were two distinct patterns of coping within the parent-adolescent dyad: (1) coping that was similar between parent and child, and (2) coping that was dissimilar. Within each of these categories were subcategories that referred to the styles of managing the illness situation. The category of similar coping included the subcategories of (a) mutual protection; (b) being accepting of each other; (c) dealing with the illness by normalizing it; (d) approaching the illness mechanically; and (e) keeping the illness in its place. A parallel problematizing and withdrawing mode of managing the illness was the only subcategory identified under dissimilar coping. |
Criteria/reference for study | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 | 11 | 12 | 13 | 14 | 15 | 16 | 17 | 18 | 19 | 20 | 21 | 22 |
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
1. Clear statement of, and rationale for, research question/aims/purposes | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 0.5 | 1 | 1 | 0.5 | 1 | 1 | 1 | 1 | 1 | 0.5 | 1 | 0.5 | 1 | 1 |
2. Study thoroughly contextualised by existing literature | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 0.5 | 1 | 1 | 1 | 0.5 | 0.5 | 1 | 1 |
3. Method/design apparent, and consistent with research intent | 0.5 | 1 | 0.5 | 0.5 | 1 | 1 | 0.5 | 1 | 1 | 0 | 1 | 0.5 | 1 | 1 | 0.5 | 0.5 | 1 | 1 | 0 | 0.5 | 0.5 | 0.5 |
4. Data collection strategy apparent and appropriate | 1 | 0.5 | 1 | 1 | 0 | 1 | 0.5 | 0.5 | 1 | 1 | 1 | 1 | 0.5 | 1 | 1 | 1 | 0.5 | 0.5 | 1 | 1 | 0.5 | 1 |
5. Sample and sampling method appropriate | 1 | 0.5 | 1 | 0 | 0.5 | 0.5 | 0.5 | 1 | 1 | 0.5 | 1 | 0.5 | 0.5 | 0.5 | 0.5 | 0.5 | 0.5 | 0.5 | 0.5 | 0.5 | 0.5 | 0.5 |
6. Analytic approach appropriate | 0.5 | 0.5 | 0.5 | 0.5 | 0.5 | 1 | 1 | 0.5 | 0.5 | 1 | 1 | 0.5 | 1 | 0.5 | 1 | 0.5 | 0.5 | 1 | 0.5 | 0.5 | 1 | 0.5 |
7. Context described and taken account of in interpretation | 0.5 | 0.5 | 1 | 0.5 | 0.5 | 1 | 1 | 0.5 | 0.5 | 1 | 1 | 0 | 0.5 | 0.5 | 0.5 | 0.5 | 0.5 | 0.5 | 0.5 | 0.5 | 0.5 | 1 |
8. Clear audit trail given | 1 | 0.5 | 1 | 0 | 1 | 1 | 1 | 0.5 | 1 | 0.5 | 1 | 0 | 1 | 0.5 | 0 | 0 | 0 | 0.5 | 0 | 1 | 1 | 0 |
9. Data used to support interpretation | 1 | 0.5 | 1 | 0.5 | 1 | 1 | 0.5 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 |
10. Researcher reflexivity demonstrated | 0.5 | 0 | 0 | 0 | 0 | 0.5 | 0 | 0 | 1 | 0 | 0 | 0 | 1 | 0 | 0 | 0 | 0.5 | 0.5 | 0 | 0 | 0.5 | 0 |
11. Demonstration of sensitivity to ethical concerns | 1 | 1 | 0.5 | 0 | 1 | 1 | 1 | 1 | 1 | 1 | 0.5 | 1 | 0.5 | 0.5 | 1 | 1 | 0.5 | 1 | 0.5 | 0.5 | 0 | 0.5 |
12. Relevance and transferability evident | 1 | 1 | 1 | 1 | 1 | 1 | 0.5 | 1 | 1 | 1 | 1 | 0.5 | 1 | 1 | 0.5 | 1 | 1 | 0.5 | 0.5 | 1 | 0.5 | 1 |
Total (category) | 10 (A) | 8 (B) | 9.5 (A) | 6 (B) | 8.5 (B) | 11 (A) | 8.5 (B) | 9 (A) | 10.5 (A) | 9 (A) | 10.5 (A) | 7 (B) | 10 (A) | 8.5 (B) | 7.5 (B) | 8 (B) | 8 (B) | 8.5 (B) | 6 (B) | 7.5 (B) | 8 (B) | 8 (B) |