Families under pressure: A qualitative study of stressors in families of children with congenital heart disease

Zhang, Yi; Zhou, Huayun; Bai, Yangjuan; Chen, Zhisong; Wang, Yanjiao; Hu, Qiulan; Yang, Ming-Wei; Wei, Wei; Ding, Lei; Ma, Fang

doi:10.1002/smi.3240

Cited by 3 publications

(1 citation statement)

References 80 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…However, many studies highlight the importance of early psychological support for parents, and in particular for mothers, to reduce maternal prenatal stress and optimize disease management [14]. Zhang et al [31] suggested that confusion and lack of understanding about the diagnosis of CHD can bring stress to the family, and for this reason early psychological support combined with education about the disease is fundamental to help families. Although there is no evidence on this subject, one possibility would be to promote Behavioral Cardiology for patients' disease management [32].…”

Section: Psychological Support For Parents During Pregnancy and After...mentioning

confidence: 99%

Psychological Impact of a Prenatal Diagnosis of Congenital Heart Disease on Parents: Is It Time for Tailored Psychological Support?

Mutti,

Ait Ali,

Marotta

et al. 2024

JCDD

View full text Add to dashboard Cite

The prenatal diagnosis of congenital heart disease (CHD) represents, for both parents, a particularly stressful and traumatic life event from a psychological point of view. The present review sought to summarize the findings of the most relevant literature on the psychological impact of prenatal diagnosis of CHD on parents, describing the most common mechanisms employed in order to face this unexpected finding. We also highlight the importance of counseling and the current gaps in the effects of psychological support on this population.

show abstract

Section: Psychological Support For Parents During Pregnancy and After...mentioning

confidence: 99%

Psychological Impact of a Prenatal Diagnosis of Congenital Heart Disease on Parents: Is It Time for Tailored Psychological Support?

Mutti,

Ait Ali,

Marotta

et al. 2024

JCDD

View full text Add to dashboard Cite

show abstract

Resiliency process in the family after childhood leukaemia diagnosis: A longitudinal qualitative study

Huang,

Chen,

Wang

et al. 2024

Journal of Clinical Nursing

View full text Add to dashboard Cite

AimsTo construct a conceptual framework on the process of family resilience during the first year following childhood leukaemia diagnosis.DesignA longitudinal qualitative interview study.MethodsA longitudinal qualitative study following a grounded theory methodology was employed. Semi‐structured interviews were conducted with parents of children with leukaemia in a general hospital. The participants were recruited through purposive and theoretical sampling and longitudinal engagement was achieved by conducting interviews at 1, 3, 6, and 12 months after the leukaemia diagnosis. The core category and categories were saturated following the enrolment of parents of children with leukaemia. Data collection and analyses were performed simultaneously.ResultsSixteen parents of children with leukaemia participated. The core category of ‘families living with childhood leukaemia’ refers to the process of family resilience during the first year following childhood leukaemia diagnosis, which includes three phases: (1) destruction and resiliency period; (2) adjustment and consolidation period; and (3) growth and planning period.ConclusionThis study explored the dynamic, complex and continuous processes of resilience among families coping with childhood leukaemia during the first year following diagnosis. Further research should design tailored family interventions that characterise the different phases of family resilience, aiming to support family well‐being, integrity and functioning.Implications for the profession and/or patient careBoth families and healthcare professionals must create an enabling environment that supports families coping with difficulties. Understanding the different phases of family resilience allows healthcare professionals to provide holistic care that meets the demands of families with childhood leukaemia.ImpactUnique knowledge emerged about the family's resiliency process when facing childhood leukaemia, suggesting a family‐led revolution in understanding and managing childhood leukaemia. Therefore, the development of phased, resilience‐based family interventions is imperative.Reporting methodThis study was reported using the COREQ checklist.Patient or public contributionPatients contributed via study participation.

show abstract

Exploring fathers’ experiences of caring for a child with complex care needs through ethnography and arts-based methodologies

Woodgate,

Gonzalez,

Ripat

et al. 2024

BMC Pediatr

View full text Add to dashboard Cite

Background Although the number of children living with complex care needs (CCN) is increasing worldwide, there is limited data on the experience of fathers caring for children with CCN. This paper reports on findings specific to fathers’ experiences of caring for their child with CCN and highlights recommendations provided for parents of children with CCN, service providers, and policymakers. The findings emerged from a larger study designed to examine how Canadian families of children with CCN participate in society. Methods We used the qualitative research approach of ethnography and arts-based methodologies (ecomaps and photovoice) as well as purposive and snowball sampling techniques. Four parents were engaged as advisors and twenty-nine fathers participated in interviews (all were married or in a relationship; age range of 28 to 55 years). In line with an ethnographic approach, data analysis involved several iterative steps including comparing data from the first, second, and third set of interviews and refining themes. Results One overarching theme, striving to be there for the child with CCN, was identified. Five supporting themes further exemplified how fathers strived to be there for their child: 1) contributing to the parental team through various roles; 2) building accessibility through adaptation; 3) engaging in activities with the child; 4) expressing admiration and pride in their children; and 5) meaning making. Recommendations for parents included making and nurturing connections and asking for help while recommendations for healthcare and social service providers included communicating authentically with families and listening to parents. Fathers also indicated that leadership and funding for programs of families of children with CCN should be priorities for policymakers. Conclusions In addition to documenting fathers’ active involvement in their child’s care and development, our findings provide new insights into how fathers make participation in everyday life accessible and inclusive for their children. Study findings also point to 1) priority areas for policymakers (e.g., accessible physical environments); 2) factors that are critical for fostering collaborative care teams with fathers; and 3) the need for complex care teams in the adult health care system. Implications for those providing psychosocial support for these families are noted as well as knowledge gaps worthy of future exploration such as the role of diversity or intersectionality in fathering children with CCN.

show abstract

Families under pressure: A qualitative study of stressors in families of children with congenital heart disease

Cited by 3 publications

References 80 publications

Psychological Impact of a Prenatal Diagnosis of Congenital Heart Disease on Parents: Is It Time for Tailored Psychological Support?

Psychological Impact of a Prenatal Diagnosis of Congenital Heart Disease on Parents: Is It Time for Tailored Psychological Support?

Resiliency process in the family after childhood leukaemia diagnosis: A longitudinal qualitative study

Exploring fathers’ experiences of caring for a child with complex care needs through ethnography and arts-based methodologies

Contact Info

Product

Resources

About