Family Health Leaders: Lessons on Living with Li‐Fraumeni Syndrome across Generations
Li‐Fraumeni Syndrome (LFS) is a hereditary disorder that confers an approximately 90% lifetime risk of cancer and requires comprehensive lifetime cancer screening. We explored healthcare roles for managing LFS‐related cancer risks and treatments that were assumed by parents, adolescents, and adult c...
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| Published in: | Family process Vol. 59; no. 4; pp. 1648 - 1663 |
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| Main Authors: | , , , , , , , , , , , |
| Format: | Journal Article |
| Language: | English |
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Blackwell Publishing Ltd
01-12-2020
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| Abstract | Li‐Fraumeni Syndrome (LFS) is a hereditary disorder that confers an approximately 90% lifetime risk of cancer and requires comprehensive lifetime cancer screening. We explored healthcare roles for managing LFS‐related cancer risks and treatments that were assumed by parents, adolescents, and adult children. Semi‐structured interviews were conducted with 23 families. Family groupings were comprised of 2–5 members, with the younger generation in each family ranging in age from 7 to 40 years. Using grounded theory methods, we conducted open and focused coding of interview transcript content. Family members described how the role of health leader was implemented in their family, as well as factors such as maturation of a child or death of a member that determined who assumed particular roles and how these roles shifted over time. They often expressed collective responsibility for helping relatives understand LFS and implement appropriate cancer risk management. Members demonstrated their health role by attending others’ medical appointments for support or information gathering. The health leader role was intergenerational and provided the family necessary support in navigating complicated healthcare decisions. Our findings provide insight into healthcare providers regarding how LFS patients and their relatives develop unique medical decision‐making and caring roles influenced by the hereditary nature of LFS, and how these roles change over time. Providers who are attuned to family role dynamics may be better able to meet relatives’ psychosocial and medical needs by understanding how living with LFS influences the family system’s functioning and facilitating members’ support for each other.
RESUMEN
El síndrome de Li‐Fraumeni (LFS) es un trastorno hereditario que concede aproximadamente un 90 % de riesgo durante toda la vida de contraer cáncer y exige exámenes completos para la detección del cáncer de por vida. Analizamos los roles sanitarios a la hora de manejar los riesgos y los tratamientos de cáncer relacionados con el LFS que asumieron los padres, los adolescentes y los hijos adultos. Se realizaron entrevistas semiestructuradas con 23 familias. Los agrupamientos familiares estaban compuestos por entre 2 y 5 familiares, donde la edad de la generación más joven de cada familia oscilaba entre 7 y 40 años. Utilizando los métodos de la teoría fundamentada, realizamos una codificación abierta y centrada del contenido de la transcripción de la entrevista. Los miembros de la familia describieron cómo se implementó el rol de jefe de la salud en su familia, así como factores como la maduración de un niño o la muerte de un miembro que determinaron quiénes asumieron roles particulares y cómo estos roles cambiaron con el tiempo. Con frecuencia ellos expresaron la responsabilidad colectiva de ayudar a los familiares a comprender el LFS y a implementar el manejo adecuado del riesgo de contraer cáncer. Los familiares demostraron sus roles sanitarios asistiendo a citas médicas de los demás para recibir apoyo u obtener información. El rol de jefe sanitario fue intergeneracional y proporcionó a la familia el apoyo necesario para manejarse ante decisiones complicadas sobre la asistencia sanitaria. Nuestros resultados brindan información para los prestadores de servicios médicos con respecto a cómo los pacientes de LFS y sus familiares desarrollan roles únicos para la toma de decisiones médicas y el cuidado influenciados por la índole hereditaria del LFS, y cómo estos roles cambian con el tiempo. Es posible que los prestadores que estén acostumbrados a la dinámica de roles familiares sean más capaces de satisfacer las necesidades psicosociales y médicas de los familiares si comprenden cómo vivir con LFS influye en el funcionamiento del sistema familiar y si facilitan el apoyo mutuo de los familiares.
摘要
李‐佛美尼综合症是一种遗传性的疾病，大概一生中有90%的患癌几率，它要求家庭成员终身接受综合性癌症筛查。本文研究医疗保健对管理李‐佛美尼综合症风险和治疗过程中所起的作用，这些风险和治疗均由家长，青少年和成年孩子们来承担着。参与研究的家庭有23个，采用半结构化的访谈。家庭的组成有2‐5个家庭成员，每个家庭的较年轻一代人年龄跨度7‐40岁。使用草根理论方法，我们针对访谈文稿进行了开放式和集中式解码。家庭成员描述了健康领袖的作用在家庭内如何实现的，还有孩子的成熟，某家庭成员的去世等因素，这些因素都决定了谁承担了什么角色，这些角色在一段时间范围内如何发生变化。他们通常会表达集体性的共同责任，帮助亲戚理解LFS症和实施合适的癌症风险管理。家庭成员通过陪同一起去就医来给与支持以及信息搜集的方式来实现他们的健康作用。健康领袖的作用是代际间的，提供了必要的支持给家庭，特别是在复杂的医疗保健方面的决定。我们的研究结果提供了健康医疗供给方的看法，主要是关于LFS病人和他们的亲戚如何作出特殊的医疗决策和发挥照料者的角色，这些都深受LFS遗传性特性的影响，和这些角色如何随着时间而发生变化。那些可以适应家庭角色动态变化的供给方可以较好地实现亲戚的社会心理和医疗的需要，主要是通过尽力理解承受LFS影响的家庭系统的功能，促进家庭成员们彼此的支持。 |
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| AbstractList | Li-Fraumeni Syndrome (LFS) is a hereditary disorder that confers an approximately 90% lifetime risk of cancer and requires comprehensive lifetime cancer screening. We explored healthcare roles for managing LFS-related cancer risks and treatments that were assumed by parents, adolescents, and adult children. Semi-structured interviews were conducted with 23 families. Family groupings were comprised of 2-5 members, with the younger generation in each family ranging in age from 7 to 40 years. Using grounded theory methods, we conducted open and focused coding of interview transcript content. Family members described how the role of health leader was implemented in their family, as well as factors such as maturation of a child or death of a member that determined who assumed particular roles and how these roles shifted over time. They often expressed collective responsibility for helping relatives understand LFS and implement appropriate cancer risk management. Members demonstrated their health role by attending others' medical appointments for support or information gathering. The health leader role was intergenerational and provided the family necessary support in navigating complicated healthcare decisions. Our findings provide insight into healthcare providers regarding how LFS patients and their relatives develop unique medical decision-making and caring roles influenced by the hereditary nature of LFS, and how these roles change over time. Providers who are attuned to family role dynamics may be better able to meet relatives' psychosocial and medical needs by understanding how living with LFS influences the family system's functioning and facilitating members' support for each other.Li-Fraumeni Syndrome (LFS) is a hereditary disorder that confers an approximately 90% lifetime risk of cancer and requires comprehensive lifetime cancer screening. We explored healthcare roles for managing LFS-related cancer risks and treatments that were assumed by parents, adolescents, and adult children. Semi-structured interviews were conducted with 23 families. Family groupings were comprised of 2-5 members, with the younger generation in each family ranging in age from 7 to 40 years. Using grounded theory methods, we conducted open and focused coding of interview transcript content. Family members described how the role of health leader was implemented in their family, as well as factors such as maturation of a child or death of a member that determined who assumed particular roles and how these roles shifted over time. They often expressed collective responsibility for helping relatives understand LFS and implement appropriate cancer risk management. Members demonstrated their health role by attending others' medical appointments for support or information gathering. The health leader role was intergenerational and provided the family necessary support in navigating complicated healthcare decisions. Our findings provide insight into healthcare providers regarding how LFS patients and their relatives develop unique medical decision-making and caring roles influenced by the hereditary nature of LFS, and how these roles change over time. Providers who are attuned to family role dynamics may be better able to meet relatives' psychosocial and medical needs by understanding how living with LFS influences the family system's functioning and facilitating members' support for each other. Li-Fraumeni Syndrome (LFS) is a hereditary disorder that confers an approximately 90% lifetime risk of cancer and requires comprehensive lifetime cancer screening. We explored healthcare roles for managing LFS-related cancer risks and treatments that were assumed by parents, adolescents, and adult children. Semi-structured interviews were conducted with 23 families. Family groupings were comprised of 2–5 members, with the younger generation in each family ranging in age from 7 to 40 years. Using grounded theory methods, we conducted open and focused coding of interview transcript content. Family members described how the role of health leader was implemented in their family, as well as factors such as maturation of a child or death of a member that determined who assumed particular roles and how these roles shifted over time. They often expressed collective responsibility for helping relatives understand LFS and implement appropriate cancer risk management. Members demonstrated their health role by attending others’ medical appointments for support or information gathering. The health leader role was intergenerational and provided the family necessary support in navigating complicated healthcare decisions. Our findings provide insight into healthcare providers regarding how LFS patients and their relatives develop unique medical decision-making and caring roles influenced by the hereditary nature of LFS, and how these roles change over time. Providers who are attuned to family role dynamics may be better able to meet relatives’ psychosocial and medical needs by understanding how living with LFS influences the family system’s functioning and facilitating members’ support for each other. Li‐Fraumeni Syndrome (LFS) is a hereditary disorder that confers an approximately 90% lifetime risk of cancer and requires comprehensive lifetime cancer screening. We explored healthcare roles for managing LFS‐related cancer risks and treatments that were assumed by parents, adolescents, and adult children. Semi‐structured interviews were conducted with 23 families. Family groupings were comprised of 2–5 members, with the younger generation in each family ranging in age from 7 to 40 years. Using grounded theory methods, we conducted open and focused coding of interview transcript content. Family members described how the role of health leader was implemented in their family, as well as factors such as maturation of a child or death of a member that determined who assumed particular roles and how these roles shifted over time. They often expressed collective responsibility for helping relatives understand LFS and implement appropriate cancer risk management. Members demonstrated their health role by attending others’ medical appointments for support or information gathering. The health leader role was intergenerational and provided the family necessary support in navigating complicated healthcare decisions. Our findings provide insight into healthcare providers regarding how LFS patients and their relatives develop unique medical decision‐making and caring roles influenced by the hereditary nature of LFS, and how these roles change over time. Providers who are attuned to family role dynamics may be better able to meet relatives’ psychosocial and medical needs by understanding how living with LFS influences the family system’s functioning and facilitating members’ support for each other. El síndrome de Li‐Fraumeni (LFS) es un trastorno hereditario que concede aproximadamente un 90 % de riesgo durante toda la vida de contraer cáncer y exige exámenes completos para la detección del cáncer de por vida. Analizamos los roles sanitarios a la hora de manejar los riesgos y los tratamientos de cáncer relacionados con el LFS que asumieron los padres, los adolescentes y los hijos adultos. Se realizaron entrevistas semiestructuradas con 23 familias. Los agrupamientos familiares estaban compuestos por entre 2 y 5 familiares, donde la edad de la generación más joven de cada familia oscilaba entre 7 y 40 años. Utilizando los métodos de la teoría fundamentada, realizamos una codificación abierta y centrada del contenido de la transcripción de la entrevista. Los miembros de la familia describieron cómo se implementó el rol de jefe de la salud en su familia, así como factores como la maduración de un niño o la muerte de un miembro que determinaron quiénes asumieron roles particulares y cómo estos roles cambiaron con el tiempo. Con frecuencia ellos expresaron la responsabilidad colectiva de ayudar a los familiares a comprender el LFS y a implementar el manejo adecuado del riesgo de contraer cáncer. Los familiares demostraron sus roles sanitarios asistiendo a citas médicas de los demás para recibir apoyo u obtener información. El rol de jefe sanitario fue intergeneracional y proporcionó a la familia el apoyo necesario para manejarse ante decisiones complicadas sobre la asistencia sanitaria. Nuestros resultados brindan información para los prestadores de servicios médicos con respecto a cómo los pacientes de LFS y sus familiares desarrollan roles únicos para la toma de decisiones médicas y el cuidado influenciados por la índole hereditaria del LFS, y cómo estos roles cambian con el tiempo. Es posible que los prestadores que estén acostumbrados a la dinámica de roles familiares sean más capaces de satisfacer las necesidades psicosociales y médicas de los familiares si comprenden cómo vivir con LFS influye en el funcionamiento del sistema familiar y si facilitan el apoyo mutuo de los familiares. 李‐佛美尼综合症是一种遗传性的疾病，大概一生中有90%的患癌几率，它要求家庭成员终身接受综合性癌症筛查。本文研究医疗保健对管理李‐佛美尼综合症风险和治疗过程中所起的作用，这些风险和治疗均由家长，青少年和成年孩子们来承担着。参与研究的家庭有23个，采用半结构化的访谈。家庭的组成有2‐5个家庭成员，每个家庭的较年轻一代人年龄跨度7‐40岁。使用草根理论方法，我们针对访谈文稿进行了开放式和集中式解码。家庭成员描述了健康领袖的作用在家庭内如何实现的，还有孩子的成熟，某家庭成员的去世等因素，这些因素都决定了谁承担了什么角色，这些角色在一段时间范围内如何发生变化。他们通常会表达集体性的共同责任，帮助亲戚理解LFS症和实施合适的癌症风险管理。家庭成员通过陪同一起去就医来给与支持以及信息搜集的方式来实现他们的健康作用。健康领袖的作用是代际间的，提供了必要的支持给家庭，特别是在复杂的医疗保健方面的决定。我们的研究结果提供了健康医疗供给方的看法，主要是关于LFS病人和他们的亲戚如何作出特殊的医疗决策和发挥照料者的角色，这些都深受LFS遗传性特性的影响，和这些角色如何随着时间而发生变化。那些可以适应家庭角色动态变化的供给方可以较好地实现亲戚的社会心理和医疗的需要，主要是通过尽力理解承受LFS影响的家庭系统的功能，促进家庭成员们彼此的支持。 Li-Fraumeni Syndrome (LFS) is a hereditary disorder that confers an approximately 90% lifetime risk of cancer and requires comprehensive lifetime cancer screening. We explored healthcare roles for managing LFS-related cancer risks and treatments that were assumed by parents, adolescents, and adult children. Semi-structured interviews were conducted with 23 families. Family groupings were comprised of 2-5 members, with the younger generation in each family ranging in age from 7 to 40 years. Using grounded theory methods, we conducted open and focused coding of interview transcript content. Family members described how the role of health leader was implemented in their family, as well as factors such as maturation of a child or death of a member that determined who assumed particular roles and how these roles shifted over time. They often expressed collective responsibility for helping relatives understand LFS and implement appropriate cancer risk management. Members demonstrated their health role by attending others' medical appointments for support or information gathering. The health leader role was intergenerational and provided the family necessary support in navigating complicated healthcare decisions. Our findings provide insight into healthcare providers regarding how LFS patients and their relatives develop unique medical decision-making and caring roles influenced by the hereditary nature of LFS, and how these roles change over time. Providers who are attuned to family role dynamics may be better able to meet relatives' psychosocial and medical needs by understanding how living with LFS influences the family system's functioning and facilitating members' support for each other. Li‐Fraumeni Syndrome (LFS) is a hereditary disorder that confers an approximately 90% lifetime risk of cancer and requires comprehensive lifetime cancer screening. We explored healthcare roles for managing LFS‐related cancer risks and treatments that were assumed by parents, adolescents, and adult children. Semi‐structured interviews were conducted with 23 families. Family groupings were comprised of 2–5 members, with the younger generation in each family ranging in age from 7 to 40 years. Using grounded theory methods, we conducted open and focused coding of interview transcript content. Family members described how the role of health leader was implemented in their family, as well as factors such as maturation of a child or death of a member that determined who assumed particular roles and how these roles shifted over time. They often expressed collective responsibility for helping relatives understand LFS and implement appropriate cancer risk management. Members demonstrated their health role by attending others’ medical appointments for support or information gathering. The health leader role was intergenerational and provided the family necessary support in navigating complicated healthcare decisions. Our findings provide insight into healthcare providers regarding how LFS patients and their relatives develop unique medical decision‐making and caring roles influenced by the hereditary nature of LFS, and how these roles change over time. Providers who are attuned to family role dynamics may be better able to meet relatives’ psychosocial and medical needs by understanding how living with LFS influences the family system’s functioning and facilitating members’ support for each other. RESUMEN El síndrome de Li‐Fraumeni (LFS) es un trastorno hereditario que concede aproximadamente un 90 % de riesgo durante toda la vida de contraer cáncer y exige exámenes completos para la detección del cáncer de por vida. Analizamos los roles sanitarios a la hora de manejar los riesgos y los tratamientos de cáncer relacionados con el LFS que asumieron los padres, los adolescentes y los hijos adultos. Se realizaron entrevistas semiestructuradas con 23 familias. Los agrupamientos familiares estaban compuestos por entre 2 y 5 familiares, donde la edad de la generación más joven de cada familia oscilaba entre 7 y 40 años. Utilizando los métodos de la teoría fundamentada, realizamos una codificación abierta y centrada del contenido de la transcripción de la entrevista. Los miembros de la familia describieron cómo se implementó el rol de jefe de la salud en su familia, así como factores como la maduración de un niño o la muerte de un miembro que determinaron quiénes asumieron roles particulares y cómo estos roles cambiaron con el tiempo. Con frecuencia ellos expresaron la responsabilidad colectiva de ayudar a los familiares a comprender el LFS y a implementar el manejo adecuado del riesgo de contraer cáncer. Los familiares demostraron sus roles sanitarios asistiendo a citas médicas de los demás para recibir apoyo u obtener información. El rol de jefe sanitario fue intergeneracional y proporcionó a la familia el apoyo necesario para manejarse ante decisiones complicadas sobre la asistencia sanitaria. Nuestros resultados brindan información para los prestadores de servicios médicos con respecto a cómo los pacientes de LFS y sus familiares desarrollan roles únicos para la toma de decisiones médicas y el cuidado influenciados por la índole hereditaria del LFS, y cómo estos roles cambian con el tiempo. Es posible que los prestadores que estén acostumbrados a la dinámica de roles familiares sean más capaces de satisfacer las necesidades psicosociales y médicas de los familiares si comprenden cómo vivir con LFS influye en el funcionamiento del sistema familiar y si facilitan el apoyo mutuo de los familiares. 摘要 李‐佛美尼综合症是一种遗传性的疾病，大概一生中有90%的患癌几率，它要求家庭成员终身接受综合性癌症筛查。本文研究医疗保健对管理李‐佛美尼综合症风险和治疗过程中所起的作用，这些风险和治疗均由家长，青少年和成年孩子们来承担着。参与研究的家庭有23个，采用半结构化的访谈。家庭的组成有2‐5个家庭成员，每个家庭的较年轻一代人年龄跨度7‐40岁。使用草根理论方法，我们针对访谈文稿进行了开放式和集中式解码。家庭成员描述了健康领袖的作用在家庭内如何实现的，还有孩子的成熟，某家庭成员的去世等因素，这些因素都决定了谁承担了什么角色，这些角色在一段时间范围内如何发生变化。他们通常会表达集体性的共同责任，帮助亲戚理解LFS症和实施合适的癌症风险管理。家庭成员通过陪同一起去就医来给与支持以及信息搜集的方式来实现他们的健康作用。健康领袖的作用是代际间的，提供了必要的支持给家庭，特别是在复杂的医疗保健方面的决定。我们的研究结果提供了健康医疗供给方的看法，主要是关于LFS病人和他们的亲戚如何作出特殊的医疗决策和发挥照料者的角色，这些都深受LFS遗传性特性的影响，和这些角色如何随着时间而发生变化。那些可以适应家庭角色动态变化的供给方可以较好地实现亲戚的社会心理和医疗的需要，主要是通过尽力理解承受LFS影响的家庭系统的功能，促进家庭成员们彼此的支持。 |
| Author | Pantaleao, Ashley Savage, Sharon A. Epstein, Norman B. Khincha, Payal P. Young, Jennifer L. Peters, June A. Carlson, Mae Greene, Mark H. Werner‐Lin, Allison Bremer, Renée C. Roy, Kevin Achatz, Maria Isabel |
| AuthorAffiliation | School of Medicine, Center for Biomedical Ethics, Stanford University, Stanford, CA Department of Family Science, School of Public Health, University of Maryland, College Park, MD Clinical Genetics Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, Rockville, MD School of Social Policy and Practice, University of Pennsylvania, Philadelphia, PA |
| AuthorAffiliation_xml | – name: Department of Family Science, School of Public Health, University of Maryland, College Park, MD – name: Clinical Genetics Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, Rockville, MD – name: School of Medicine, Center for Biomedical Ethics, Stanford University, Stanford, CA – name: School of Social Policy and Practice, University of Pennsylvania, Philadelphia, PA |
| Author_xml | – sequence: 1 givenname: Ashley surname: Pantaleao fullname: Pantaleao, Ashley email: apantale@umd.edu organization: University of Maryland – sequence: 2 givenname: Jennifer L. surname: Young fullname: Young, Jennifer L. organization: Stanford University – sequence: 3 givenname: Norman B. surname: Epstein fullname: Epstein, Norman B. organization: University of Maryland – sequence: 4 givenname: Mae surname: Carlson fullname: Carlson, Mae organization: University of Pennsylvania – sequence: 5 givenname: Renée C. surname: Bremer fullname: Bremer, Renée C. organization: National Cancer Institute – sequence: 6 givenname: Payal P. surname: Khincha fullname: Khincha, Payal P. organization: National Cancer Institute – sequence: 7 givenname: June A. surname: Peters fullname: Peters, June A. organization: National Cancer Institute – sequence: 8 givenname: Mark H. surname: Greene fullname: Greene, Mark H. organization: National Cancer Institute – sequence: 9 givenname: Kevin surname: Roy fullname: Roy, Kevin organization: University of Maryland – sequence: 10 givenname: Maria Isabel surname: Achatz fullname: Achatz, Maria Isabel organization: National Cancer Institute – sequence: 11 givenname: Sharon A. surname: Savage fullname: Savage, Sharon A. organization: National Cancer Institute – sequence: 12 givenname: Allison surname: Werner‐Lin fullname: Werner‐Lin, Allison organization: University of Pennsylvania |
| BackLink | https://www.ncbi.nlm.nih.gov/pubmed/31647118$$D View this record in MEDLINE/PubMed |
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| CitedBy_id | crossref_primary_10_1007_s12687_021_00523_6 crossref_primary_10_1007_s12687_024_00713_y crossref_primary_10_1016_j_ssmqr_2023_100282 crossref_primary_10_1016_j_jaging_2022_101027 crossref_primary_10_1542_peds_2021_053509I crossref_primary_10_1080_10720537_2022_2037113 crossref_primary_10_1002_cncr_33004 crossref_primary_10_1093_hsw_hlab032 crossref_primary_10_1016_j_critrevonc_2024_104431 crossref_primary_10_1111_cge_14042 |
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| Copyright | 2019 Family Process Institute 2019 Family Process Institute. 2020 Family Process Institute |
| Copyright_xml | – notice: 2019 Family Process Institute – notice: 2019 Family Process Institute. – notice: 2020 Family Process Institute |
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| Keywords | Hereditary Cancer Psychosocial 李-佛美尼综合症 Li-Fraumeni Syndrome 作用 Roles 遗传性癌症 社会心理 psicosocial síndrome de Li-Fraumeni Family cáncer hereditario 家庭 familia |
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| References | 2012; 83 2017; 7 2015; 37 2017; 3 2019; 95 2017; 26 2010; 19 2005; 115 2015; 121 2017; 23 2002; 1 2016; 122 2008; 149 2005 2012; 16 2016; 39 2016; 17 2005; 44 2005; 67 2003; 12 2018; 7 2009; 99 2017; 92 2015; 135 2011; 51 2004; 12 2015; 21 2019; 25 2018 2005; 32 2018; 30 2017; 19 2016 2012; 4 2016; 25 2018; 37 2005; 14 e_1_2_7_6_1 e_1_2_7_5_1 e_1_2_7_4_1 e_1_2_7_3_1 e_1_2_7_9_1 e_1_2_7_8_1 e_1_2_7_7_1 e_1_2_7_18_1 e_1_2_7_17_1 e_1_2_7_16_1 e_1_2_7_40_1 e_1_2_7_2_1 e_1_2_7_15_1 e_1_2_7_41_1 e_1_2_7_14_1 e_1_2_7_13_1 e_1_2_7_12_1 e_1_2_7_10_1 e_1_2_7_26_1 e_1_2_7_27_1 Walsh F. (e_1_2_7_38_1) 2016 e_1_2_7_28_1 e_1_2_7_29_1 Ersig A. L. (e_1_2_7_11_1) 2019; 25 e_1_2_7_30_1 e_1_2_7_25_1 e_1_2_7_31_1 e_1_2_7_24_1 e_1_2_7_32_1 e_1_2_7_23_1 e_1_2_7_33_1 e_1_2_7_22_1 e_1_2_7_34_1 e_1_2_7_21_1 e_1_2_7_35_1 e_1_2_7_20_1 e_1_2_7_36_1 e_1_2_7_37_1 e_1_2_7_39_1 Koehly L. M. (e_1_2_7_19_1) 2003; 12 |
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| Snippet | Li‐Fraumeni Syndrome (LFS) is a hereditary disorder that confers an approximately 90% lifetime risk of cancer and requires comprehensive lifetime cancer... Li-Fraumeni Syndrome (LFS) is a hereditary disorder that confers an approximately 90% lifetime risk of cancer and requires comprehensive lifetime cancer... |
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| SubjectTerms | Adolescent Adolescents Adult Adult children Cancer Child mortality Children Collective responsibility cáncer hereditario familia Families & family life Family Family - psychology Family Characteristics Family Health Family relations Family system perspective Female Grounded Theory Health Behavior Health care industry Health needs Health services Hereditary Cancer Heredity Humans Information gathering Interviews Leadership Li-Fraumeni Syndrome - psychology Li‐Fraumeni Syndrome Male Maturation Medical decision making Medical screening Medicine psicosocial Psychosocial Psychosocial factors Qualitative Research Relatives Risk management Role Roles síndrome de Li‐Fraumeni Tests Treatment methods Young Adult 作用 家庭 李‐佛美尼综合症 社会心理 遗传性癌症 |
| Title | Family Health Leaders: Lessons on Living with Li‐Fraumeni Syndrome across Generations |
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