Caregiving strategies in families of children with congenital heart disease: A qualitative study

Dalir, Zahra; Manzari, Zahra Sadat; Kareshki, Hossein; Heydari, Abbas

doi:10.4103/ijnmr.ijnmr_19_20

Cited by 14 publications

(14 citation statements)

References 25 publications

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“…46 Another study demonstrated that family members caring for a child with CHD learn to accept and adjust to the difficult caregiving role with time. 15 These findings emphasize that acceptance is an emotion regulation process that serves as a stress management and coping method for mothers and parents dealing with the challenges of having a child with CHD. While acceptance improves the psychological well-being of mothers of children with CHD, genetic counselors and other healthcare providers must address other potential psychological problems, such as guilt, self-blame, and denial, that may need to be navigated and resolved.…”

Section: Discussionmentioning

confidence: 84%

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Coping Strategies of Filipino Mothers of Children with Congenital Heart Disease in a Tertiary Hospital in the Philippines

2024

Acta Med Philipp

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Background and Objective. Mothers play a significant role as primary caregivers for children with congenital heart disease (CHD) within the family. Given the complex health needs of children with CHD, coping strategies are needed to deal with the challenges associated with caring for their children with the condition. Coping mechanisms encompass fostering resilience, seeking support, and maintaining a positive outlook to navigate stress, uncertainty, and obstacles throughout their child's medical journey with CHD. The objective of this study is to explore the coping strategies employed by mothers of children diagnosed with CHD in a tertiary hospital in the Philippines. Methods.Employing a descriptive qualitative study design, data was gathered through key informant interviews utilizing a semi-structured topic guide, which aimed to explore the perspectives and experiences of mothers with children with CHDs. Ethical approval was obtained, and data collection occurred from January to March 2016. Interview transcripts were recorded, transcribed verbatim, and underwent content analysis. Themes derived from the analysis were then validated and confirmed by the study participants.Results. A total of 11 mothers voluntarily participated in the study. These participants expressed utilizing various coping strategies to manage their child's condition, including seeking assistance from both physicians and traditional healers, advocating for their children, receiving support from their family and friends, regulation of emotion, and prayer and faith in God. Conclusion.This study sheds light on the coping mechanisms used by mothers in raising thier children with CHD, highlighting the value of spirituality and psychological support in their journey. Enhancing assistance for impacted families and advancing genetic counseling services are two benefits of incorporating these findings into healthcare practice.

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Section: Discussionmentioning

confidence: 84%

“…[12][13][14] Studies, on the other hand, have shown that parents and families are capable of adjusting to the presence and demands of CHD as a means of coping. 15 Coping refers to the numerous ways to handle emotional, physical, or psychological stresses. 16 Coping manifests itself in a variety of ways.…”

Section: Introductionmentioning

confidence: 99%

Coping Strategies of Filipino Mothers of Children with Congenital Heart Disease in a Tertiary Hospital in the Philippines

2024

Acta Med Philipp

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“…The questions we asked about the role of belief in God/spirituality were compared to those raised by other authors. Dalir et al (2021) reported that in stressful situations related to caring for an ill child, prayer and recitation of the Quran reduced tension and anxiety, and strengthened caregivers and parents of children with CHD. Ahn et al (2014) showed that both parents and children with CHD, for whom faith in God (spirituality) plays an important role, coped better with emotions than nonbelievers.…”

Section: Discussionmentioning

confidence: 99%

Life situation of a caregiver of a child with congenital heart defect and/or other cardiac problems: structure and preliminary validation of a new questionnaire

et al. 2023

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BackgroundIllness in a child with cardiac disease causes stress, brings additional responsibilities, reorganizes family life, and changes the functioning of the family.AimThis study aimed to validate a new questionnaire evaluating the life situations of caregivers/parents of children with congenital heart disease (CHD) and/or other cardiac diseases (OCD).Materials and methodsThe questionnaire comprised 10 questions aimed at assessing the life situation of an ill child’s caregiver in two main areas: personal and spiritual. The total score of the questionnaire assessing the life situation of the caregiver of a child with a CHD and/or OCD can range from 0 to 32 points, with scores <26 indicating a poor, 25 to 32 indicating an average, and >32 indicating a good level of life situation in the personal sphere of the caregiver. The questionnaire was assessed using Cronbach’s alpha tests, and repeatability was assessed using Cohen’s Kappa test (retest) within a time interval of two to 4 weeks from the first measurement.ResultsThe research covered 50 respondents. Cohesion in the personal sphere obtained a satisfactory value of Cronbach’s α = 0.72, in the spiritual sphere: Cronbach’s α = 0.83, and the result common for both sections was: Cronbach’s α = 0.66.ConclusionThe Life Situation Assessment Questionnaire for caregivers of children with CHD and OCD is a reliable and homogeneous tool for measuring the functioning of parents in the event of a child’s illness.

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“…Our study further found that children with CHD had an unusual growth track due to the disease, putting additional psychological pressure on the family. As Ladak et al (2019) suggested, surgery for children with CHD improves survival rates but is often reparative rather than curative, and health issues such as respiratory infections, frequent hospitalisations, developmental disorders, and worsening exercise tolerance levels are common, causing families to experience tension and psychological stress because their children are different (Dalir et al, 2020;Ni et al, 2019).…”

Section: Characteristicsmentioning

confidence: 99%

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

et al. 2023

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The objective of this study was to better understand the stressors in families of children with congenital heart disease (CHD) to assist with formulating targeted stress management plans for such families. A descriptive qualitative study was undertaken at a tertiary referral hospital in China. Following purposeful sampling, interviews were conducted with 21 parents of children with CHD regarding the stressors in their families. Following content analysis, 11 themes were generated from the data and categorised into six main domains: the initial stressor and associated hardships, normative transitions, prior strains, the consequences of family efforts to cope, intrafamily and social ambiguity, and sociocultural values. The 11 themes include confusion regarding the disease, hardships encountered during treatment, the heavy financial burden, the unusual growth track of the child due to the disease, normal events becoming abnormal for the family, impaired family functioning, family vulnerability, family resilience, family boundary ambiguity induced by role alteration, a lack of knowledge about community support and family stigma. Various and complex stressors exist for families of children with CHD. Medical personnel should fully evaluate the stressors and take targeted measures before implementing family stress management practices. It is also necessary to focus on the posttraumatic growth of families of children with CHD and strengthen resilience. Moreover, family boundary ambiguity and a lack of knowledge about community support should not be ignored, and further research is needed to explore these variables. Most importantly, policymakers and healthcare providers should adopt a range of strategies to address the stigma of being in a family of a child with CHD.

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Caregiving strategies in families of children with congenital heart disease: A qualitative study

Cited by 14 publications

References 25 publications

Coping Strategies of Filipino Mothers of Children with Congenital Heart Disease in a Tertiary Hospital in the Philippines

Coping Strategies of Filipino Mothers of Children with Congenital Heart Disease in a Tertiary Hospital in the Philippines

Life situation of a caregiver of a child with congenital heart defect and/or other cardiac problems: structure and preliminary validation of a new questionnaire

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

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