Concerns of South Korean Patients and Family Members Affected with Genetic Conditions: A Content Analysis of Internet Website Messages

Kang, Haeyong; Veach, Patricia McCarthy; LeRoy, Bonnie S.

doi:10.1007/s10897-009-9277-1

Cited by 3 publications

(3 citation statements)

References 29 publications

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“…The study excluded genetic counseling sessions providing genetic test results, and none were from East Asian countries [5]. There is an increasing demand for culture-specific genetic counseling practice [9,10] and only few studies on Koreans have been published to date [11,12].…”

Section: Introductionmentioning

confidence: 99%

Psychological effects and risk perception after genetic counseling

et al. 2021

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Purpose: Demand for genetic counseling on cancer predisposition syndrome is increasing. We evaluated the psychological effect on counselees after genetic counseling at a clinic in a single center. Materials and Methods: We surveyed a total of 72 enrolled participants who visited a genetic counseling clinic at the Samsung Medical Center (SMC). The initial survey was conducted before the first genetic counseling session, and the second survey was conducted after the second genetic counseling session. A total of 43 participants completed both the initial and second surveys. Results: The initial survey of 72 participants indicated higher feelings of guilt in the group with religion, higher depression and anxiety in the group with a diagnosis of self, and higher anxiety in the group on self-referral to the genetic counseling clinic. In the completed survey of 43 participants, overall decreased depression was observed after the second genetic counseling session (P=0.013). Risk perception and anxiety decreased in the group diagnosed with benign variant/variant of uncertain significance (BV/VUS, 25/3) and increased in the group diagnosed with pathogenic variant (PV, 15). Risk perception and anxiety differed between the BV/VUS and PV groups (P<0.001 and P=0.03, respectively). Conclusion:The genetic counseling clinic at the SMC was effective in ameliorating the depression score. Assessment of survey results revealed different depression scores, feelings of guilt and anxiety, and different effects of the genetic counseling clinic, depending on the subgroups. Understanding the needs and psychological characteristics of different groups is necessary for improving genetic counseling services.

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Section: Introductionmentioning

confidence: 99%

Psychological effects and risk perception after genetic counseling

et al. 2021

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“…Moreover, a critical first step in designing and assessing interventions involves establishing the needs of the patients and families (Wen and Gustafson 2004). Research suggests that, while social support is a frequently reported need among patients with genetic disorders and their families (Kang et al 2010), specific support-related needs can differ among disorders (Siklos and Kerns 2006). Thus, the aim of this survey study was to determine the attitudes and needs of youth with NF1 and their caregivers regarding the use of ISGs.…”

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confidence: 99%

Attitudes About Internet Support Groups Among Adolescents and Young Adults with Neurofibromatosis Type 1 and their Parents

Martin

Wolters

Baldwin

et al. 2014

Journal of Genetic Counseling

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Youth with neurofibromatosis type 1 (NF1) have multiple, complex symptoms associated with physical, social-emotional, and cognitive difficulties. In addition, caring for a child with NF1 can be extremely challenging for parents. Since research with other chronic illness populations suggests that social support, including internet support groups (ISGs), can be beneficial, this survey study aimed to determine the attitudes and preferences of adolescents and young adults with NF1 and parents of a child with NF1 regarding ISGs. Thirty patients and 30 caregivers completed a 24-item survey about ISGs. Many patients and parents are not aware of any ISGs for NF1, but are interested in using one in the future for a variety of reasons, including to get answers to their questions about NF1, to find out about research studies, and to discuss problems and concerns about NF1. Specific concerns of interest include physical, social-emotional, and cognitive aspects of NF1. ISGs have potential as a social support intervention within the NF1 community. ISGs for the NF1 population should include patients with NF1 (or parents of children with NF1) as well as a health professional, and both chat rooms and discussion boards likely would be well-received.

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“…One Norwegian study investigated how parents of children with a rare genetic disorder were using the Internet. 16 They assessed concerns by analyzing messages posted on Web sites. A study of an online support group found participants used the group to express encouragement, share personal experiences, and to discuss spiritual issues.…”

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confidence: 99%

Cyber Support

Lichenstein

McDonough

Matura

2013

CIN: Computers, Informatics, Nursing

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The purpose of this study was to gain an understanding of how caregivers of people with pulmonary hypertension are using an online discussion board. The chronicity and complex medical needs of people with pulmonary hypertension warrant a holistic nursing approach combining the patient and caregiver concerns to adequately address their needs. A qualitative descriptive approach was utilized. A convenience sample over an 18-month period of those caregivers who posted Internet messages to the Pulmonary Hypertension Discussion Board was included. Sociodemographics collected were age and gender of the person with pulmonary hypertension and the relationship of the caregiver to the person with pulmonary hypertension. Clinical variables collected were medications and oxygen use and years since diagnosis. Thematic analysis was used to identify themes. A total of 98 caregivers posted to the discussion board during the 18-month period; 46% of those posting were mothers of children with pulmonary hypertension. Four themes emerged: fear and frustration, questions and concerns, someone to listen to, and moving on with life. These themes characterize how caregivers of people with pulmonary hypertension were using the discussion board. Caregivers of people with pulmonary hypertension may need more information and support from their healthcare providers to adequately care for those with pulmonary hypertension.

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Concerns of South Korean Patients and Family Members Affected with Genetic Conditions: A Content Analysis of Internet Website Messages

Cited by 3 publications

References 29 publications

Psychological effects and risk perception after genetic counseling

Psychological effects and risk perception after genetic counseling

Attitudes About Internet Support Groups Among Adolescents and Young Adults with Neurofibromatosis Type 1 and their Parents

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