Barriers and facilitators to discussing parent mental health within child health care: Perspectives of parents raising a child with congenital heart disease

2021 ◽  
pp. 136749352110580
Author(s):  
Melanie K Franklin ◽  
Allison Karpyn ◽  
Jennifer Christofferson ◽  
Linda G McWhorter ◽  
Abigail C Demianczyk ◽  
...  
Keyword(s):  
Mental Health ◽  
Health Care ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Health Care Providers ◽  
Congenital Heart ◽  
Barriers And Facilitators ◽  
Child Health Care ◽  
Care Providers ◽  
Parent Mental Health

This study aimed to identify barriers and facilitators to discussing parent mental health within child health care for parents of children with congenital heart disease (CHD). Seventy-nine parents of young children with CHD who received care across 40 hospitals in the United States responded to questions about barriers and facilitators to discussing their mental health with their child’s health care providers. Responses were analyzed using qualitative research methods. Parents described multiple barriers: (1) belief that parent mental health support was outside the care team’s scope of practice, (2) perceived expectation to “stay strong,” (3) fear of negative judgment or repercussion, (4) individual preferences for communication/support, (5) desire to maintain care resources on their child, (6) perceived need to compartmentalize emotions, and (7) negative reactions to past emotional disclosure. Parents also described several facilitators: (1) confidence in the care team’s ability to provide support, (2) intentional efforts by the care team to provide support, (3) naturally extroverted tendencies, and (4) developing personal connections with health care providers. It is important that health care providers normalize the impact of child illness on the family and create an environment in which parents feel comfortable discussing mental health challenges.

scholarly journals Struggling and Overcoming Daily Life Barriers Among Children With Congenital Heart Disease and Their Parents in the West Bank, Palestine

2018 ◽  
Vol 24 (4) ◽  
pp. 585-611 ◽  
Author(s):  
Kawther Elissa ◽  
Carina Sparud-Lundin ◽  
Åsa B. Axelsson ◽  
Salam Khatib ◽  
Ewa-Lena Bratt
Keyword(s):  
Health Care ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Health Care Providers ◽  
Congenital Heart ◽  
Daily Life ◽  
West Bank ◽  
Well Being ◽  
Negative Consequences ◽  
Care Providers

Advances in early diagnosis, treatment, and postoperative care have resulted in increased survival rates among children with congenital heart disease (CHD). Research focus has shifted from survival to long-term follow-up, well-being, daily life experiences, and psychosocial consequences. This study explored the everyday experiences of children with CHD and of their parents living in the Palestinian West Bank. Interviews with nine children aged 8 to 18 years with CHD and nine parents were analyzed using content analysis. The overall theme that emerged was facing and managing challenges, consisting of four themes: sociocultural burden and finding comfort, physical and external limitations, self-perception and concerns about not standing out, and limitations in access to health care due to the political situation. To provide optimum care for children with CHD and their parents, health care providers and policy makers must understand the negative consequences associated with sociocultural conditions and beliefs about chronic illness.

The adaptation process of mothers raising a child with complex congenital heart disease

2018 ◽  
Vol 22 (4) ◽  
pp. 520-531 ◽  
Author(s):  
Jeong-Ah Ahn ◽  
Sunhee Lee
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Health Care Providers ◽  
Congenital Heart ◽  
Child Rearing ◽  
Complex Congenital Heart Disease ◽  
Adaptation Process ◽  
Care Providers ◽  
Impact Phase ◽  
The Impact

Mothers of children with congenital heart disease (CHD) tend to be concerned about their child’s normal life. The majority of these mothers tend to experience negative psychological problems. In this study, the adaptation process of mothers raising a child with complex CHD was investigated based on the sociocultural context of Korea. The data collection was conducted by in-depth interviews and theoretical sampling was performed until the data were saturated. The collected data were analyzed using continuous theoretical comparisons. The results of the present study showed that the core category in the mothers’ adaptation process was ‘anxiety regarding the future’, and the mothers’ adaptation process consisted of the impact phase, standing against phase, and accepting phase. In the impact phase, the participants emotionally fluctuated between ‘feelings of abandonment’ and ‘entertaining hope’. In the standing against phase, participants tended to dedicate everything to child-rearing while being affected by ‘being encouraged by support’ and ‘being frustrated by tasks beyond their limits’. In the accepting phase, the subjects attempted to ‘accept the child as is’, ‘resist hard feelings’, and ‘share hope’. Health-care providers need to develop programs that include information regarding CHD, how to care for a child with CHD, and effective child-rearing behaviors.

scholarly journals The impact of the first wave of COVID-19 on those with lifelong conditions: a case study of congenital heart disease

2021 ◽  
Author(s):  
Jo Wray ◽  
Christina Pagel ◽  
Adrian H. Chester ◽  
Fiona Kennedy ◽  
Sonya Crowe
Keyword(s):  
Health Care ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Service Delivery ◽  
Congenital Heart ◽  
Discussion Forums ◽  
Care Providers ◽  
Related Factors ◽  
Delivery Of Care ◽  
The Impact

AbstractObjectivesGlobally, health care systems have been stretched to the limit by the COVID-19 pandemic. Significant changes have had to be made to the way in which non-COVID-19 related care has been delivered. Our objective was to understand, from the perspective of patients with a chronic, life-long condition (congenital heart disease, CHD) and their parents/carers, the impact of COVID-19 on the delivery of care, how changes were communicated and whether health care providers should do anything differently in a subsequent wave of COVID-19 infections.Design and settingA series of asynchronous discussion forums set up and moderated by three patient charities via their Facebook pages.ParticipantsPatients with CHD and parents/carers of patients with CHD.Main outcome measuresQualitative responses to questions posted on the discussion forums.ResultsThe forums ran over a 6-week period and involved 111 participants. Following thematic analysis of the transcripts, we identified three themes and ten subthemes related to individual condition-related factors, patient-related factors and health professional/centre factors that may have influenced how patients and parents/carers experienced changes to service delivery as a result of COVID-19.ConclusionsOur findings, whilst collected in relation to patients with CHD, are not necessarily specific to this population and we believe reflect the experiences of many thousands of people with life-long conditions in the UK. Drawing on what participants told us in the discussion forums, we have developed recommendations related to communication, service delivery and support during the pandemic that would, we think, improve patients’ experience of care and, potentially, their outcomes. Although the data were collected specifically in relation to COVID-19, a number of these recommendations are relevant to the wider delivery of care to patients with chronic underlying health conditions and reflect principles of good communication and service delivery.

scholarly journals Challenges for Adolescents With Congenital Heart Defects/Chronic Rheumatic Heart Disease and What They Need: Perspectives From Patients, Parents and Health Care Providers at the Institut Jantung Negara (National Heart Institute), Malaysia

2021 ◽  
Vol 11 ◽  
Author(s):  
Sue Kiat Tye ◽  
Geetha Kandavello ◽  
Syarifah Azizah Wan Ahmadul Badwi ◽  
Hariyati Sharima Abdul Majid
Keyword(s):  
Health Care ◽  
Heart Disease ◽  
Health Care Providers ◽  
Congenital Heart Defects ◽  
Congenital Heart ◽  
Heart Defects ◽  
Care Providers ◽  
Psychoeducational Program ◽  
Adolescent Transition ◽  
Rheumatic Heart

ObjectivesThis study aimed to describe the experiences and challenges faced by adolescents with moderate and severe congenital heart defects (CHD) or Chronic Rheumatic Heart Disease (CRHD) and to determine their needs in order to develop an Adolescent Transition Psychoeducational Program.MethodsThe study involved seven adolescents with moderate to severe CHD/CRHD, six parents, and four health care providers in Institute Jantung Negara (National Heart Institute). Participants were invited for a semi-structured interview. Qualitative data were analyzed through the Atlas.ti 7 program using triangulation methods.Results/conclusionsWe identified five themes concerning the experience and challenges of adolescents relating to: (1) emotional/psychological issues; (2) the progress of the illness; (3) relationship issues; (4) future preparation; and, (5) school and community. These themes were identified together with eleven subcategories. The staff expressed support for the development of the Adolescent Transition Psychoeducational Program and adolescents with CHD/CRHD and their parents were willing to participate in the program if their schedule allowed. Their suggestions to improve the program were classified into six categories, with two main themes, (1) the self-management of illness in life and the future; and, (2) social support. In conclusion, the findings from the situation analysis act as a basis for a conceptual framework that will contribute to the development of an Adolescent Transition Psychoeducational Program that aims to empower adolescents with CHD/CRHD, enabling them to manage challenges during the transition phase between childhood and adulthood.

Barriers and Facilitators to Seeking Mental Health Care Among First Responders: “Removing the Darkness”

2019 ◽  
Vol 26 (1) ◽  
pp. 43-54
Author(s):  
Sara Jones ◽  
Katherine Agud ◽  
Jean McSweeney
Keyword(s):  
Mental Health ◽  
Health Care ◽  
Mental Health Care ◽  
Health Care Providers ◽  
Help Seeking ◽  
First Responders ◽  
Barriers And Facilitators ◽  
Care Providers ◽  
Negative Experience ◽  
Convenience Sample

BACKGROUND: First responders (FRs) are at significant risk for developing mental health (MH) problems due to the nature, frequency, and intensity of duty-related traumatic exposure. However, their culture strongly esteems strength and self-reliance, which often inhibits them from seeking MH care. AIMS: This study explored factors that influenced FRs’ perceptions of MH problems and engagement in MH services. METHODS: A community-based approach and individual ethnographic qualitative interviews were used. Recruitment of a convenience sample of firefighters and emergency medical technicians/paramedics from across Arkansas was facilitated by our community partners. Interviews were analyzed using content analysis and constant comparison. RESULTS: Analysis generated three broad factors that influenced FRs’ perception of MH problems and engagement in MH services: (a) Knowledge, (b) Barriers to help-seeking, and (c) Facilitators to help-seeking. Knowledge was an overarching factor that encompassed barriers and facilitators: A lack of knowledge was a barrier to help-seeking but increased knowledge served as a facilitator. Barriers included five subthemes: Can’t show weakness, Fear of confidentiality breech, Therapist: negative experience, Lack of access and availability, and Family burden. Facilitators included five subthemes: Realizing “I’m not alone,” Buy-in, Therapist: positive experience, Problems got too bad, and Recommendations. CONCLUSIONS: Findings provide unique perspectives from FRs about how to best address their MH needs. First responders, as well as mental health care providers, need a more thorough understanding of these issues in order to mitigate barriers and facilitate help-seeking. As advocates, educators, and health care providers, psychiatric nurses are well-positioned to care for this at-risk population.

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