Health Care Professionals’ Views of Sharing Information with Families Who Have a Child with a Genetic Condition

Gallo, Agatha M.; Angst, Denise B.; Knafl, Kathleen A.; Twomey, John G.; Hadley, Emily

doi:10.1007/s10897-010-9286-0

Cited by 11 publications

(11 citation statements)

References 24 publications

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“…Families should have access to multiple counseling sessions as their needs change through their child's developmental stages into adulthood. (McConkie-Rosell and Spiridigliozzi 2004) A family-centered approach may facilitate information sharing in families who have a child with a genetic condition (Gallo et al 2010). Multiple counseling sessions could also promote trusting relationships between LQTS families and professionals.…”

Section: Discussionmentioning

confidence: 99%

LQTS Parents’ Reflections About Genetic Risk Knowledge and their Need to Know or Not to Know their Children's Carrier Status

Mangset

Hofmann

2014

Journal of Genetic Counseling

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Long QT syndrome (LQTS) is a contributor to unexplained deaths in infants (SIDS), children, teenagers and young adults. A gene test result may allow for individual tailored treatment, but also pose a burden of knowing one's carrier status, with no treatment recommendation. Genetic risk knowledge in the case of LQTS can promote adjustment and coping, but also fear anxiety, ambivalence and moral dilemmas. This makes it challenging to respect both the right to know and the right not to know. The purpose of this study was to explore LQTS parents' perception of genetic knowledge, and their need to know or not to know about their children's carrier status. Qualitative, semi structured interviews were conducted with thirteen parents of LQTS-children. Results show that parents found it important to know the result of a gene test for LQTS including their children's carrier status. The risk was framed and incorporated into their everyday life and their life perspectives. Pertinent moral dilemmas concerned information disclosure to children and relatives. Parents thought that early and gradual disclosure to children would promote coping. Parents' moral dilemmas were rarely addressed during encounters with healthcare providers. The participants had several suggestions for improvement in that regard.

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Section: Discussionmentioning

confidence: 99%

LQTS Parents’ Reflections About Genetic Risk Knowledge and their Need to Know or Not to Know their Children's Carrier Status

Mangset

Hofmann

2014

Journal of Genetic Counseling

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“…33,34 Assisting consultands in the communication of information to at-risk relatives. This theme comprises nine papers with studies focussing on professionals' practice [35][36][37] and specific interventions to assist consultands in the communication of information to at-risk relatives. [38][39][40][41][42][43] Features of practice included psychoeducational guidance and information aids that were used as adjuncts to clinical practice.…”

Section: Studies Included In Quantitative Synthesismentioning

confidence: 99%

How communication of genetic information within the family is addressed in genetic counselling: a systematic review of research evidence

et al. 2015

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Supporting consultands to communicate risk information with their relatives is key to obtaining the full benefits of genetic health care. To understand how health-care professionals address this issue in clinical practice and what interventions are used specifically to assist consultands in their communication of genetic information to appropriate relatives, we conducted a systematic review. Four electronic databases and four subject-specific journals were searched for papers published, in English, between January 1997 and May 2014. Of 2926 papers identified initially, 14 papers met the inclusion criteria for the review and were heterogeneous in design, setting and methods. Thematic data analysis has shown that dissemination of information within families is actively encouraged and supported by professionals. Three overarching themes emerged: (1) direct contact from genetic services: sending letters to relatives of mutation carriers; (2) professionals' encouragement of initially reluctant consultands to share relevant information with at-risk relatives and (3) assisting consultands in communicating genetic information to their at-risk relatives, which included as subthemes (i) INTRODUCTIONSupporting consultands of genetic services to effectively communicate information about genetic risks with their relatives is key to obtaining the full benefits of genetic health care. 1 Genetic health practitioners typically rely on the proband (or, for child probands, the parents) to inform relatives about their potential at-risk status. Passing on such information can be problematic, which may prevent relatives from making informed choices regarding risk management of the disease and life planning decisions. 2 Individual characteristics and patterns of family behaviour and relationships, disease characteristics and cultural factors may withhold or delay disclosure of genetic information to atrisk relatives, even when consultands see this as their personal responsibility. [3][4][5][6][7] Although guidelines recommend that professionals should not contact family members directly, that also state that professionals should actively encourage consultands to transmit relevant risk information to relatives and support them throughout the communication process; however, there is lack of clarity regarding how this should be done. 8,9 There has been some discussion on how to cascade information about genetic health risks to the relatives of patients with familial hyper-cholesterolaemia, including the active contacting of relatives directly by professionals, although this depends entirely upon information provided by the proband. 10 With genetic diseases increasingly treatable and preventable, some recommend a more proactive role of genetic professionals. 11,12

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“…Although Gallo (2001; 2005; 2009a; 2009b; 2010) has significantly contributed to the literature regarding how families share information with children about genetic conditions and employs the family management style framework (FMSF) model, this does not sufficiently address the unique challenges faced by parents of children with 22q11DS. Parents and caregivers of children with 22q11DS have the need to communicate in a method suitable to a child with cognitive disabilities.…”

Section: Discussionmentioning

confidence: 99%

“…One of the initial challenges we faced when approaching this study was the lack of an appropriate conceptual model to guide our exploration of 22q11DS diagnosis disclosure, since the typical intellect of these children is in the borderline range and many models, such as the concept of open communication discussed previously, presume typically developing children. Although Gallo et al (2001Gallo et al ( , 2005Gallo et al ( , 2009aGallo et al ( , b, 2010 has significantly contributed to the literature regarding how families share information with children about genetic conditions and employs the family management style framework (FMSF) model, this does not sufficiently address the unique challenges faced by parents of children with 22q11DS. Parents and caregivers of children with 22q11DS have the need to communicate in a method suitable to a child with cognitive disabilities.…”

Section: Study Limitations/strengths and Future Directionsmentioning

confidence: 99%

Assessment of Parental Disclosure of a 22q11.2 Deletion Syndrome Diagnosis and Implications for Clinicians

Faux

Schoch²,

Eubanks

et al. 2012

Journal of Genetic Counseling

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Most children with chromosome 22q11.2 deletion syndrome (22q11DS) have an IQ in the range that may allow them to be capable of understanding a genetic diagnosis despite mild intellectual disabilities. However, there are no publications that relate to the disclosure of a 22q11DS diagnosis to the affected child, or the factors that influence parents’ disclosure to the child. A pilot study was conducted including eight semi-structured interviews with caregivers of children with 22q11DS, 10 to 17 years of age, to investigate the factors that influence how parents inform their children of the diagnosis. Six of eight participants had disclosed the diagnosis to the child, and most of these parents felt they could have benefited from additional advice from professionals to increase their confidence and success, as well as the child’s comprehension of the information. Those who had not informed the child were uncertain about the words to use, how to initiate the conversation, or were concerned about the child’s level of understanding. Our results demonstrate that genetics professionals should help prepare caregivers for conversations with their children about the diagnosis of 22q11DS, monitor the understanding of the diagnosis over time, and provide ongoing support.

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Health Care Professionals’ Views of Sharing Information with Families Who Have a Child with a Genetic Condition

Cited by 11 publications

References 24 publications

LQTS Parents’ Reflections About Genetic Risk Knowledge and their Need to Know or Not to Know their Children's Carrier Status

LQTS Parents’ Reflections About Genetic Risk Knowledge and their Need to Know or Not to Know their Children's Carrier Status

How communication of genetic information within the family is addressed in genetic counselling: a systematic review of research evidence

Assessment of Parental Disclosure of a 22q11.2 Deletion Syndrome Diagnosis and Implications for Clinicians

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