Involving family members in cancer care: focus group considerations of patients and oncological providers

Speice, Jenny; Harkness, Janet; Laneri, Hope; Frankel, Richard M.; Roter, Debra; Kornblith, Alice B.; Ahles, Tim A.; Winer, Eric P.; Fleishman, Stewart B.; Luber, P.; Zevon, Michael A.; McQuellon, Richard P.; Trief, Paula M.; Finkel, Jerry B.; Spira, James; Greenberg, Donna; Rowland, Jem J.; Holland, Jimmie C.

doi:10.1002/(sici)1099-1611(200003/04)9:2<101::aid-pon435>3.0.co;2-d

Cited by 75 publications

(64 citation statements)

References 11 publications

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“…The initial unplanned presence of partners in early interviews proved beneficial in eliciting greater details from patients regarding the content of follow-up appointments. This is perhaps unsurprising given family members' involvement in cancer care and their role (when present) in prompting, or relaying, important details within consultations [60].…”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

“I wish I’d told them”: A qualitative study examining the unmet psychosexual needs of prostate cancer patients during follow-up after treatment

O’Brien

Rose

Campbell

et al. 2011

Patient Education and Counseling

101

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Section: Discussionmentioning

confidence: 99%

“…Men were asked to extend the invitation for interview to their partners if they wished, as there had been impromptu involvement of spouses in pilot interviews (Partners included n=18) (See [60] for a detailed discussion about the unplanned presence of spouses in interviews on cancer).…”

Section: Samplementioning

confidence: 99%

“I wish I’d told them”: A qualitative study examining the unmet psychosexual needs of prostate cancer patients during follow-up after treatment

O’Brien

Rose

Campbell

et al. 2011

Patient Education and Counseling

101

View full text Add to dashboard Cite

“…Many studies reported cases of individuals who went out of their way to disclose to more distant relatives with whom they had no contact or relationship. 15,17,29 Family forms A further layer of complexity follows from the fact that lay or social notions of family and the 'genetic family' do not always correspond. 17 Rather, there is a tendency to equate familial relation with emotional and social ties.…”

Section: Proximity Of Relationshipmentioning

confidence: 99%

Factors influencing intrafamilial communication of hereditary breast and ovarian cancer genetic information

2009

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What factors influence intrafamilial communication of hereditary breast and ovarian cancer (HBOC) genetic risk information? Such information can have health implications for individuals who undergo genetic testing, but it can also have implications for their blood relatives. This literature review adopts an ecological model to summarize factors at the individual, familial, and community levels, as well as cross cutting factors relating to the complexity of HBOC genetic information and responsibilities that this information can give rise to. These factors are complex and may result in conflicting senses of responsibility. Faced with the task of communicating HBOC genetic information, the response may be to attempt to balance the potential negative impact of the information on the well-being of the informee (eg, can s/he handle this information?) against the potential health benefit that the knowledge could result in. This balancing represents an effort to reconcile conflicting approaches to protecting family members, and is a moral dilemma. This review sheds light on the factors that contribute to resolve this dilemma. Keywords: BRCA 1/2; ecological; hereditary breast and ovarian cancer; genetic information; family; communication IntroductionHereditary breast and ovarian cancer (HBOC) genetic information has relevance not only for those who undergo genetic testing, but also for their genetic relatives. In light of this, intrafamilial communication of HBOC genetic information is important; but it is also highly complex and many factors weigh into the decision to communicate and the process of communication. This article is a review of factors influencing intrafamilial communication of HBOC genetic information. We adopt an 'ecological' model to categorize influencing factors at the individual, familial and community levels. Cross-cutting factors are also included, such as the complexity of the information and responsibilities that the information can give rise to (see Table 1). Improving the understanding of the factors that influence intrafamilial communication of genetic information may serve to guide genetics professionals and patients in decision making when it comes to intrafamilial communication and assist in the development of policy in this area. It may also help to guide the development of guidelines, particularly as there is a lack of guidance dealing specifically with intrafamilial communication of HBOC genetic information and genetic information more generally. This is especially important given the rapid development of new technologies for generating genetic information and the potential impact of this increase in information on families. This review is undertaken in the context of HBOC genetic information that living adults obtain in a clinical context. It does not consider communication with minor children, information about deceased adults or information generated in a research context. It also excludes studies of or theories on direct communication with family members by health professionals, 1,2 c...

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“…However, limited qualitative research has, more comprehensively, explored stakeholder experiences of and views concerning family involvement. The limited qualitative research conducted to date indicates that most patients appreciate and prefer family involvement in cancer consultations [7,8], and FMs themselves appreciate the opportunity to attend and contribute [9]. Whilst FMs report many positive experiences with oncology clinicians (e.g.…”

Section: Introductionmentioning

confidence: 99%

Attitudes and experiences of family involvement in cancer consultations: a qualitative exploration of patient and family member perspectives

Laidsaar-Powell

Butow

et al. 2016

Support Care Cancer

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FMs appear to make valuable contributions to cancer consultations, and their presence can benefit both the patient and the FM themselves in many ways. However, for some FMs, attending consultations can be challenging. Study findings point to the need for psychosocial support addressing FMs' needs and the development of communication strategies for oncology clinicians to positively engage with FMs. Further research is needed in these areas.

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Involving family members in cancer care: focus group considerations of patients and oncological providers

Cited by 75 publications

References 11 publications

“I wish I’d told them”: A qualitative study examining the unmet psychosexual needs of prostate cancer patients during follow-up after treatment

“I wish I’d told them”: A qualitative study examining the unmet psychosexual needs of prostate cancer patients during follow-up after treatment

Factors influencing intrafamilial communication of hereditary breast and ovarian cancer genetic information

Attitudes and experiences of family involvement in cancer consultations: a qualitative exploration of patient and family member perspectives

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