Author/

year

Design

Location

Participants

Genetic risk

Primary study focus

Findings

Carlsson & Nilbert 2007

Qualitative research design; interviews

Sweden

19 interviews with relatives (both carriers and non-carriers)

Lynch syndrome

To explore experiences from and perceived impact on life after genetic testing for HNPCC

The importance of conveying the information to relatives was mentioned by almost all carriers and half of the non-carriers. Counsellees experienced a feeling of responsibility to inform relatives at risk, which was felt for both close relatives as well as for relatives with whom there is a geographical distance. Counsellees experienced disclosure as a burden, because they needed time to cope with their diagnosis. Expected reactions and views on individual functioning of relatives influenced disclosure. Relatives could not be informed when there were no or limited contact details available. In addition, it was found hard to find the right moment or to write a letter to relatives with whom there is no personal contact. Counsellees experienced disclosure as a burden, because they needed time to cope with their diagnosis. Expected reactions and views on individual functioning of relatives influenced disclosure. Relatives could not be informed when there were no or limited contact details available. In addition, it was found hard to find the right moment or to write a letter to relatives with whom there is no personal contact. However, sharing the information with relatives also could provide support. Disclosure should be performed in a way that stresses the importance, but also provides support and hope that cancer can be prevented. Communication aids were preferred.

Crotser & Dickerson 2010

Qualitative research design; in-depth interviews

United States, New York

19 interviews (of 17 nuclear families) with women informed about genetic risks on BRCA

BRCA 1/2

To describe experience of women learning about family BRCA1/2 mutation and to explore the meaning of genetic risk to female biological relatives of BRCA 1/2 mutation carriers

Counsellees thought that relatives should have the possibility to make an informed choice. Some counsellees even felt they had to convince relatives at risk of the importance of the information.
Disclosure went similar to communication of other non-urgent information. It was often a common discussed subject in families prior to genetic testing. Counsellees preferred face-to-face disclosure, in order to provide emotional support and physical presence when needed. Psychosocial support for counsellees was preferred as well. Some counsellees wished to prevent the burden on relatives and experienced feelings of guilt because of passing on the gene to future generations. At the same time however, relatives were needed to provide support.

Dancyger 2011

Qualitative research design; semi-structured interviews

United Kingdom

Interviews with 10 probands and 24 relatives

BRCA 1/2

To investigate how families communicate about BRCA genetic testing and how this communication may have been influenced by family relationships

Many counsellees felt responsible or even obliged for informing relatives at risk, because they had the right to know the information. In families with an open communication style, sharing the information with relatives was also congruent with the family’s pattern of communication. Counsellees felt discharged from their responsibility when they informed relatives who subsequently could inform their direct relatives. Participants perceived parents as responsible for informing children. However, they felt responsible for disclosure, some counsellees experienced it as a burden. Relatives were not informed because of no or limited contact with relatives, or because it was considered as irrelevant for male relatives or relatives without children. Disclosure was influenced by personal circumstances of relatives, not finding the right moment or because counsellees wished not to alarm relatives at risk.

Dheensa 2017

Qualitative research design; interviews

United Kingdom

35 interviews with probands (n = 7), relatives (n = 27) &partners (n = 1)

Diverse (onco-, cardio- and neurogenetics)

To explore problems around the use of family letters to communicate about genetic risk

Counsellees felt responsible for informing relatives at risk. Some even had the feeling they had to convince their relatives of the importance of the information. One participant thought that the HCP should be responsible as well. Some counsellees experienced informing relatives as a burden, because they had to cope with their own diagnosis while putting emotional and practical effort in sharing the information with relatives at risk. Family letters supported probands with disclosure and for relatives with getting referred to a clinical genetics centre. However, both probands and relatives experienced more pressure to respectively inform relatives or to get tested. Sending the family letter to relatives with whom there was no or poor relationships felt uncomfortable, as they believed an unexpected family letter could cause anxiety or distress in relatives. Support of an HCP, (e.g. a family communication officer) was preferred by some participants.

Forrest Keenan 2005

Qualitative research design; semi-structured interviews

United Kingdom

Interviews with counsellees attending genetic counselling for HD (n=16) or HBOC (n=21) and their partners (HD: n= 12, HBOC: n= 7)

HD & HBOC

To explore with whom individuals communicate, what determines whether information is passed on (or not), and what individuals see as their obligations.

In general, counsellees felt responsible for informing their relatives at risk, with parents being responsible for informing children. However, in the HBOC group there was more ambivalence about the responsibility of HCPs in disclosure. Some even felt responsible for convincing them of the importance. This feeling of responsibility was restricted to relatives with whom they had personal contact or with whom they had an emotional relationship. Women felt, more often than men, responsible for disclosure. The majority of participants was of the opinion that someone in the family should inform relatives at risk. However, also a majority thought that support of HCPs was needed. Barriers to inform relatives at risk were no or limited contact with relatives at risk, having no emotional relationship with relatives and that it was unclear who should be informed. In the HBOC group, some participants believed the information was not important for male relatives.

Forrest 2003

Qualitative research design; semi-structured interviews

United Kingdom, Aberdeen

37 interviews with counsellees (HD: n=16; HBOC: n=21) and 19 partners (HD: n=12, HBOC: n=7)

HD & HBOC

To explore the factors which influence whether patients share information with relatives about late-onset disease and with whom they share it.

Counsellees felt responsible for informing relatives at risk. HD participants were clear that this responsibility did not belong to HCPs; HBOC participants were more ambivalent regarding HCPs responsibility. In general, they believed parents were responsible for informing their children. Some counsellees expressed feelings of frustration when relatives did not inform their direct relatives. Disclosure was experienced as a burden by some counsellees, because they needed time to cope with their diagnosis. Barriers to disclosure were no or limited contact with relatives at risk, the wish to not cause alarm in relatives and the idea that the information would be irrelevant for some relatives. All counsellees with HD were in favour of the family-mediated approach, half of HBOC counsellees felt the same way. In the HBOC group, participants thought support of HCPs was needed to legitimize the information.

Foster 2007

Qualitative research design; in-depth interviews

United Kingdom

15 interviews with counsellees during the period prior to and after receiving their genetic test result

BRCA1/2

To investigate communication between healthy women, who had a genetic test for BRCA1/2 and their relatives both before and after the test result

Counsellees thought it was important to inform relatives at risk, because of the importance of making health decisions. In addition, they felt a responsibility to disclose the information. Some counsellees felt they had to convince their relatives of the importance of the information and felt frustrated when relatives decided to not have genetic testing. Barriers against disclosure were that counsellees tried to prevent worry or alarm in relatives at risk. It was mentioned there was a conflict experienced between the feeling of responsibility to inform and the wish to respect needs of their relatives. In addition, some mentioned that it was complex information to convey.

Gaff 2005

Qualitative research design; telephone semi-structured interviews

Australia, Melbourne

12 interviews with probands

HNPCC

To explore the experiences of probands with HNPCC when informing relatives and obtain their perceptions of the utility of genetic counselling and communication aids in this process

In general, counsellees were satisfied with the family-mediated approach, except one counselee. Participants wanted to provide relatives the possibility to make choices regarding their genetic risks. Although most participants felt prepared to inform relatives at risk, barriers against disclosure were mentioned, including no or limited contact with relatives at risk, no emotional relationship with relatives, expected disinterest of relatives and the expectation that genetic testing would not be available for relatives. Information material was preferred in case of family barriers. The majority of counsellees thought that information material should not contain information about which relatives should be informed. Some counsellees preferred communication aids.

Green 1997

Qualitative research design; in-depth interviews

United Kingdom, Cambridge

Interviews with counsellees at risk pre- (N= 46) and post genetic testing (N= 40)

HBOC

To explore to whom probands communicate, what determines whether information is passed on and what do probands see as their obligations

Counsellees felt responsible for informing relatives at risk because of their right to know, with parents being responsible for informing their children. The majority of counsellees was in favour of direct contact. However, it was expected that direct contact could cause more alarm or worry in relatives. Counsellees preferred to be informed in person, and not by telephone or letter. Barriers against informing were geographical distance, no or limited contact with relatives at risk and no emotional relationship with relatives and the wish to prevent worry or alarm in relatives. In addition, some counsellees mentioned it was unclear which relatives should be informed.

Mesters et al, 2005 (16)

Qualitative research design; in-depth interviews

The Netherlands

30 interviews with counsellees, of which 11 participants with a confirmed carriers

HNPCC

To investigate people’s perspective regarding information informing one’s biological family on the hereditary predisposition for HNPCC

Counsellees felt generally a moral obligation to inform relatives at risk. Another reason to inform relatives at risk was anticipated regret when not informing relatives. Respondents indicated that although internal cues are often felt, external cues of HCPs or medical organizations would give people the feeling that informing relatives was the right thing to do. Reasons to not inform relatives at risk were young age of relatives, conflicting opinions of probands and partners regarding offspring and having limited or no contact with relatives at risk. Counsellees thought that their task was to notify relatives at risk, while the task of HCPs would be to subsequently provide additional (written) information.

Ormondroyd 2014

Qualitative research design; semi-structured interviews

United Kingdom, Oxford

22 interviews with relatives, 18 HCM en 4 LQTS

Inherited cardiac disease

To explore the process of cascade genetic testing within families for either of the two most common ICCs (LQTS & HCM), to understand how people learn about risk and make decisions about undergoing PSGT, to evaluate the psychosocial impact of such testing and to explore attitudes to direct contact of relatives about the ICC and availability of PSGT

Participants clearly appreciated to be informed about their genetic risks. However, sometimes family barriers or the wish to prevent harm made disclosure complex. Counsellees experienced barriers against disclosure, including no or limited contact with relatives at risk, considering information not relevant for certain relatives (e.g. those at older age), no emotional relationship with relatives and the wish to prevent worry or alarm in relatives. The majority of counsellees was in favour of direct contact by the HCP, with consent of the affected relative. Benefits of direct contact would be that direct contact could overcome family barriers, that it can help improve relationships, that probands are not qualified to inform relatives at risk and that an HCP could legitimize information provided by the proband. However, disadvantages would be that family conflicts and personal circumstances of relatives would not be taken into consideration and that direct contact could cause more worry in relatives that a family-mediated approach.

Pentz 2005

Qualitative research design; semi-structured interviews

United States, Texas

Probands, relatives and spouses of 16 families (N=80)

HNPCC (12/16 families mutation detected)

To describe HNPCC family members' perceptions about who has a right to know about a genetic mutation in the family and who should disclose this information to family members, with a focus on the role that should be played by health professionals in disseminating this information

Counsellees felt they had a responsibility to inform relatives. Some also thought HCPs had a certain responsibility. The majority thought that parents would be responsible for informing their children, one third of them considered the HCP responsible. Counsellees considered a conflict of duties regarding health importance, the right to know of relatives and the right on privacy of probands. They considered the health importance more important than the right on privacy. The majority thought that someone in the family should inform relatives at risk, one third believed that the HCP would be suited as well. Some believed consent should be asked for direct contact. Benefits of direct contact would be that correct information would be conveyed, barriers against disclosure could be overcome and that privacy would be warranted. Some participants mentioned confidentiality of probands and believed that individual test results should not be shared with relatives.

Peterson 2003

Qualitative research design; semi-structured interviews

United States, Texas

Interviews with relatives (N=29) and partners (N=10)

HNPCC

To describe how information about the identification of an HNPCC gene mutation was disseminated in these families, when and under what circumstances this information was shared and how relatives reacted to and acted on this information

Counsellees were generally satisfied with the family-mediated approach. They viewed themselves as responsible for informing relatives, with parents being responsible for informing their children. Probands thought it was important for relatives to have genetic testing, as this was a possibility to gain health information. A majority felt they had to convince relatives of the importance of the information. One family believed that relatives should make their own decision without interference by others. Several members expressed their wish to prevent worry or alarm in relatives at risk.

Ratnayake 2010

Qualitative research design; semi-structured telephone interviews

Australia, Sidney

50 interviews with relatives (both carriers and non-carriers)

BRCA1/2

To investigate the information dissemination preferences of individuals from families at risk of developing HBOC.

The majority of counsellees preferred to inform their relatives themselves, some with assistance of HCPs. Half of the counsellees were in favour of direct contact as well. Follow-up of probands regarding disclosure was preferred. The majority of counsellees preferred disclosure by letter, some personally and only a few by telephone. A personal explanation about the letter was preferred. Relatives preferred a personal family letter, with stepwise information and in simple language.

Van den Nieuwenhoff 2006

Qualitative research design; semi-structured interviews

The Netherlands

Interviews with probands (N=8) and relatives (N=8)

Familial hypercholesterolemia

To explore how the information packages influenced the decision of index patients to disclosure genetic information to their relatives (and the quality of the disclosure); and the way the packages influenced the decision of relatives to be tested

Counsellees viewed probands as having the responsibility to inform relatives at risk, which was limited to first-degree relatives. However, disclosure was experienced as burdening, which resulted in some probands to avoid it. Barriers experienced with the family-mediated approach were that informing relatives with whom there was no or limited contact was complex and belief that relatives would not be interested. The majority of counsellees was in favour of direct contact by the HCP. Benefits were that HCPs could legitimize information provided by the proband and that HCPs would have a neutral role in disclosure. However, they also thought that the right of privacy would be harmed. One proband thought direct contact would be better, although he would prefer to be informed by someone family. All participants were in favour of personal contact instead of disclosure by letter. Adjuvant information material was preferred. It was perceived as supportive with disclosure. In addition, information material was a cue to action, both for probands to inform relatives at risk as well as for relatives to have genetic testing. Stepwise information was preferred. A disadvantage of the family letter would be that it could induce fear in relatives, which could a barrier for having genetic testing.

Vavolizza 2015

Qualitative research design; open-ended focus groups and interviews

United States, New York

50 interviews representing 32 families, both probands and relatives

Inherited cardiac disease

To determine the attitudes and beliefs of participants regarding their subjective experience of receiving a cardiogenetic diagnosis, the motivations and goals behind disclosing genetic testing information and the extent to which individuals believe they should share this information with their family were investigated

Counsellees felt responsible for informing relatives at risk. A majority believed an individual is even obliged to share the information with relatives, a few thought this should not be an obligation. Relatives should have the possibility to make an informed decision regarding their own health and health of future generations. However, barriers against disclosure were reported, including the wish to prevent worry or fear in relatives, that it was hard to convey complex information or answer relatives' questions and that being the bad messenger was burdening. Counsellees reported to feel lonely in this disclosure process. In addition, they experienced feelings of frustration, either because relatives decided not to have genetic testing or because relatives did not inform their direct relatives. Written information material of the counsellor was preferred as support.

Whyte 2016

Qualitative research design; semi-structured interviews

United Kingdom, Cardiff

Interviews with relatives who had undergone predictive genetic testing (N=9)

Inherited cardiac disease

To gain a better understanding of the process of family communication from individuals who had received either a positive or a negative predictive result for HCM or LQTS

Counsellees considered it important to inform their relatives about their genetic risks. They felt they were responsible for disclosure, with parents being responsible for informing their children. Counsellees experienced barriers against disclosure, including no or limited contact with relatives, geographical distance, having no emotional relationship with relatives, expected disinterest of relatives and the expectation that relatives would not understand the information. Furthermore, it was unclear who should be informed, and some thought they should convince relatives of the importance of the information. Some counsellees felt frustrated when relatives did not inform their direct relatives. All participants preferred disclosure in person above disclosure by letter. The majority searched extra information on the internet. However, some experienced an information overload, which caused more worry. Stepwise information is preferred.

Aktan-Collan 2007

Quantitative research design; record & survey study

Finland

147 relatives in direct contact group, 401 relatives in family-mediated group

HNPCC

To examine attitudes and reactions towards a direct-contact approach and to compare the data with results from an earlier study on family members who had been informed by their relatives (family-mediated approach)

The majority of participants (92%) was in favour of direct contact by the HCPs. Both participants in the direct approach group and the family-mediated approach group were satisfied with the disclosure process.

Aktan-Collan 2011

Quantitative research design; survey study

Finland

248 respondents

Lynch syndrome

To investigate whether lynch syndrome carriers inform their children and what challenges are in this disclosure process. In addition, the wish for professional support was explored.

27% would have liked to attend a family meeting with a genetic counsellor or clinical geneticist, 10% would like to receive this option but would probably not attend en 63% indicated that a family meeting was not needed. 37% of respondents felt that parents should inform their offspring, 25% indicated that close relatives were responsible and 22% thought that HCPs should inform offspring. 10% thought both relatives and HCPs should share the information with offspring and 6% believed that every person could convey the information. Of women, 39% believed that informing offspring was a responsibility of the parents. Of men, 37% thought that close relatives were responsible, compared to 15% of the female respondents. Women (28%) more often than men (17%) indicated that HCPs should inform offspring.

Blandy 2003

Quantitative research design; record & survey study

France, Paris

30 probands (response rate 75%)

BRCA1/2

To describe the diffusion of information by probands and assess understanding of the information by probands and their satisfaction with the testing process

Both male and female counsellees felt responsible for informing relatives at risk. Some felt frustrated when relatives decided not to have genetic testing. Counsellees believed information material with information on the risks of offspring was preferred.

Bonadona 2001

Quantitative research design; survey study

France, Lyon

23 probands (response rate: 74%)

HBOC & HNPCC

To gain insight into the experiences of cancer patients after diagnostic genetic testing through the psychological impact of a positive result and their role as a messenger in their families

Counsellees generally felt it was complex information to convey. Some experienced disclosure as a burden. The majority was in favour of the family-mediated approach. However, 39% of participants perceived disadvantages of this approach.

De Geus 2017

Quantitative research design; survey study

The Netherlands

154 probands (response rate: 43%), of which 144 completed T1, 139 completed the intervention and 121 completed T2

HBOC & HNPCC

To assess the feasibility and acceptability of an intervention based on motivational interviewing to enhance family communication about cancer genetic risks, including an explorative and informative part

54% of participants reported that the intervention supported them in which relatives should be informed. 73% of participants who participated in also the informative part of the intervention reported that advantages and disadvantages were discussed, 72% that difficulties with disclosure were mentioned and 65% that participants brainstormed how to inform relatives at risk. 59% felt motivated and 73% indicated they felt more confident about disclosure. Participants gave the intervention an average score of 8.

Dilzell 2014

Quantitative research design; survey study

United States, Stanford

50 probands and 24 relatives (response rate could not be calculated because the denominator is unknown)

Lynch syndrome

To ascertain which educational materials probands with lynch syndrome provide to relatives and identify relationships between receiving educational materials and pursuing clinical follow-up, including genetic counselling and testing

Respondents reported several barriers against disclosure, including no or limited contact with relatives at risk, the wish to prevent alarm in relatives, and expected disinterest in relatives. Some counsellees decided to not inform certain relatives, because of high age or disease. In addition, some informed certain relatives with the idea that they would subsequently inform their direct relatives. Counsellees preferred extra information material concerning amongst others advices regarding timing of controls, guidelines for young adults and consequences for insurance or mortgages.

Gilbar & Barnoy 2012

Quantitative research design; survey study

Israel

564 counsellees

Prenatal screening & cancer genetic screening

To explore patients' attitudes to disclosure of genetic information to relatives and to examine the similarities and differences between prenatal screening and for carrier testing for cancer

Counsellees in both groups felt it was important to inform relatives. The intention to inform was higher in the HBOC group than in HD group. However, different motivations were mentioned. In the oncogenetic group, respondents thought it was important because of the health implications. Having treatment options was related to the intention to inform relatives at risk. In addition, they felt responsible for disclosure. They thought relatives had the right to know. Other motivations mentioned were that the information was familial, not personal and because of good relationships with their relatives. Respondents believed direct contact by the HCP was only a possibility when consent of the proband was received. Of the participants, 5.3% did not intend to inform relatives, with being the main reason that genetic information is personal and not familial.

Hayat Roshanai 2009 and 2010 (2 papers)

Quantitative research design; randomized survey study

Sweden, Uppsala

147 counsellees and 81 at-risk relatives (response rate: 66%)

HBOC & HNPCC

To explore to which extent counsellees disclosed the genetic information to their at-risk relatives, counsellees experience of sharing genetic information with at-risk relatives and how at-risk relatives were informed and their emotional reactions toward receiving genetic information. In addition, an intervention, consisting of providing additional information by a nurse specialist to probands, was investigated.

68% of participants reported neutral feelings regarding disclosure. The majority of participating relatives was satisfied with the disclosure procedure. In the intervention group, 53% of participants believed someone in the family should inform relatives, compared to 29% in favour of a direct contact approach by the HCP. These percentages in the control group were respectively 33% and 47%.

Julian-Reynier 1996

Quantitative research design; survey study

France

124probands and 85 relatives attending pre-test genetic counselling (response rate: 84.3%)

HBOC

To investigate the attitudes towards breast cancer predictive testing of women with a first degree relative with cancer and towards the transmission of information about the cancer risk to their relatives

89.7% of participants would inform their relatives at risk. The majority was in favour of the family-mediated approach. Only a minority of 15.5% had a positive opinion regarding a direct contact approach. However, barriers in the disclosure process were perceived, including no or limited contact with relatives, the wish to prevent worry or alarm in relatives, expected disinterest in relatives and having the opinion that the information would not be relevant for relatives at risk.

Kardashian 2012

Quantitative research design; randomized survey study

United States, San Francisco

19 probands (response rate: 51.3%)

 BRCA1/2

To assess the feasibility and acceptability of the ShaRIT intervention (provides index patients with educational resources and support mechanisms, as well as personal risk assessment information for relatives)

In the control group, 70% of participants found the information useful, 20% would have liked more information about reproductive options. One participant would have liked to receive contact details of HCPs in other clinical genetics centres for relatives. In the intervention group, all participants reported they found the information package useful. 44% reported they planned to give the information package to relatives at risk and 22% would like some information to be adjusted, for example information in other languages to provide to relatives, or electronic instead of paper information.

Kohut 2007

Quantitative research design; survey study

Canada, Ontorio

105 colorectal cancer patients (response rate 46.3%), of which 9 mutation carriers

HNPCC

To survey participants regarding their duty to warn family members about a HNPCC-causing mutation

Participants felt a certain responsibility to inform relatives at risk, which was most strongly felt for first-degree relatives. Half of participants was in favour of direct contact by the HCP. 73.5% would consent to direct contact.

Leenen 2016

Quantitative research design; survey study

The Netherlands, Rotterdam

177 individuals with a personal or family history (both probands and relatives)

Lynch syndrome

To evaluate experiences and attitudes towards a family-mediated approach in a Lynch Syndrome cohort of both tested and non-tested individuals.

Most counsellees (82%) believed probands have a responsibility to inform relatives about their hereditary risks. 63% of counsellees thought that HCPs have a more duty in disclosure as well. 73% of the participants was satisfied with the family-mediated approach. A majority of participants (77%) would consent with direct contact, with women more often in favour of a direct contact approach than men.

Segal 2003

Quantitative research design; survey study

Canada, Ontorio& Australia, Melbourne

31 carriers (response rate 77.5%) with adult and minor offspring

BRCA1/2

To investigate the content and process of disclosure from BRCA1/2 carriers to their offspring

Counsellees thought it was important to inform relatives (including children), because of their right to know. However, barriers were mentioned, including the idea that some relatives should not be informed and because of worry about the consequences for relatives for insurances or mortgages. Some probands experienced feelings of confusion regarding disclosure. Furthermore, some probands felt not confident in informing relatives at risk. In general, counsellees were satisfied with the information procedure. A majority believed a follow-up of probands was needed. Participants expressed a need for extra information material.

Auteur

Vraag 1

Vraag 2

Vraag 3

Vraag 4

Vraag 5

Vraag 6

Vraag 7

Vraag 8

Vraag 9

Vraag 10

Conclusie

Beoordelaar

A

B

A

B

A

B

A

B

A

B

A

B

A

B

A

B

A

B

A

B

Van den Nieuwenhoff 2006

Y

Y

Y

Y

Y

Y

T

Y

Y

Y

N

N

N

N

Y

Y

Y

Y

Y

Y

8 Y

Carlsson & Nilbert 2007

Y

Y

Y

Y

Y

Y

Y

Y

Y

Y

N

N

Y

Y

Y

Y

Y

Y

Y

Y

9 Y

Crotser & Dickinson 2010

Y

Y

Y

Y

Y

Y

Y

Y

Y

Y

N

N

Y

Y

Y

Y

Y

Y

Y

Y

9 Y

Dancyger 2011

Y

Y

Y

Y

Y

N

Y

Y

Y

Y

N

N

N

N

Y

Y

Y

Y

Y

Y

7 Y

Dheensa 2017

Y

Y

Y

Y

Y

N

Y

Y

Y

Y

Y

Y

Y

N

Y

Y

Y

Y

Y

Y

8 Y

Forrest Keenan 2003

Y

Y

Y

Y

Y

N

Y

Y

Y

Y

Y

Y

Y

Y

Y

Y

Y

Y

Y

Y

9 Y

Gaff 2005

Y

Y

Y

Y

N

N

Y

Y

Y

Y

Y

Y

N

N

N

N

Y

Y

Y

Y

7 Y

Green 1997

Y

Y

Y

Y

N

N

Y

Y

Y

Y

N

N

Y

Y

N

N

Y

Y

Y

Y

7 Y

Vavolizza 2015

Y

Y

Y

Y

N

N

Y

Y

Y

Y

Y

N

Y

Y

Y

Y

Y

Y

Y

Y

8 Y

Ormondroyd 2014

Y

Y

Y

Y

Y

Y

Y

Y

Y

Y

N

N

Y

Y

Y

Y

Y

Y

Y

Y

9 Y

Pentz 2005

Y

Y

Y

Y

N

N

Y

Y

Y

Y

N

N

Y

Y

Y

Y

Y

Y

Y

Y

8 Y

Peterson 2003

Y

Y

Y

Y

Y

Y

Y

Y

Y

Y

T

N

Y

Y

Y

Y

Y

Y

Y

Y

9 Y

Forrest Keenan 2005

Y

Y

Y

Y

Y

Y

Y

Y

Y

Y

Y

Y

Y

Y

Y

Y

Y

Y

Y

Y

10 Y

Ratnayake 2011

Y

Y

Y

Y

N

N

Y

Y

Y

Y

T

N

Y

Y

Y

Y

Y

Y

Y

Y

8 Y

Foster 2004

Y

Y

Y

Y

Y

Y

Y

Y

Y

Y

N

N

Y

Y

Y

Y

Y

Y

Y

Y

9 Y

Whyte 2016

Y

Y

Y

Y

Y

Y

Y

Y

Y

Y

N

N

Y

Y

Y

Y

Y

Y

Y

Y

9 Y

Mesters, 2015

Y

Y

Y

Y

Y

N

N

Y

Y

Y

8 Y

Auteur

Vraag 1

Vraag 2a

Vraag 2b

Vraag 2c

Vraag 2d

Vraag 3a

Vraag 3b

Vraag 4a

Vraag 4b

Conclusie

Beoordelaars

A

B

A

B

A

B

A

B

A

B

A

B

A

B

A

B

A

B

Kardashian 2012

2

2

1

1

0

0

1

1

1

1

0

0

0

1

1

1

2

2

9; 60% M

Segal 2003

0

1

0

0

2

0

1

1

1

1

0

0

0

0

1

1

0

0

4; 27% L

Blandy 2003

2

2

0

0

0

0

1

1

2

2

0

0

0

0

1

1

2

2

8; 53% M

Bonadona 2002

2

2

0

2

0

0

1

2

1

2

0

0

0

0

1

1

0

0

9; 60% M

De Geus 2016

2

2

1

1

2

0

2

1

2

1

0

0

0

0

1

1

0

0

6; 40% L

Dilzell 2014

2

2

0

1

0

0

1

1

1

1

0

0

0

0

1

1

1

1

7; 47% L

Aktan-Collan 2007

2

2

1

1

1

0

1

1

2

2

0

0

0

0

1

1

2

2

9; 60% M

Aktan-Collan 2011

2

1

2

2

1

0

0

1

2

11; 73% M

Kohut 2007

2

2

1

1

1

0

1

1

1

1

0

0

0

0

1

1

0

0

6; 40% L

Gilbar 2012

2

2

1

1

2

0

1

1

1

1

0

0

0

0

1

1

0

0

6; 40% L

Hayat Roshanai 2010

2

2

2

2

1

1

1

1

2

1

0

0

0

0

1

1

0

0

8; 53% M

Leenen 2016

2

2

1

2

2

0

1

1

2

2

0

0

0

0

1

1

1

1

9; 60% M

Hayat Roshanai 2009

2

2

2

2

2

1

2

1

2

2

0

0

1

1

1

1

2

2

12; 80% H

Julian-Reynier 1997

2

2

1

1

1

0

1

1

2

2

0

0

0

0

1

1

1

1

8; 53% M

Appleton 2000

Niet over familiecommunicatie

Binedell 1998

Geen pt voorkeuren

Douglas 2009

Meer ervaringen dan pt voorkeuren

Etchegary 2008

Gaat alleen over verantwoordelijkheid, niet over pt voorkeuren

Farkas Patenaude 2013

Met minderjarige kinderen

Gilbar 2016

Geen pt voorkeuren

Hallowell 2006

Geen pt voorkeuren

Hallowell 2005

Over kinderen en mbt pt voorkeuren onduidelijk

Hallowell 2003

Alleen pt ervaringen, geen voorkeuren

Hamilton 2016

Geen pt voorkeuren

Hamilton 2005

Niet echt pt voorkeuren

Hitch 2014

Fam communicatie niet focus van artikel, wel pt voorkeuren hierover vermeld

Kasparian 2015

Geen familiecommunicatie

Katapodi 2011

Geen pt voorkeuren

Kenen 2003

Geen familiecommunicatie

Kenen 2004

Geen pt voorkeuren

Landsbergen 2009

Beperkt over familiecommunicatie

Mangset 2014

Geen familiecommunicatie (en kinderen)

McCann 2009

Geen pt voorkeuren

McClellan 2013

Geen pt voorkeuren

McGivern 2004

Geen pt voorkeuren

Mellon 2006

Geen familiecommunicatie

Metcalfe 2011

Met kinderen

Patenaude 1996

Met kinderen

Plumridge 2012

Geen familiecommunicatie

Sermijn 2004

Geen pt voorkeuren

Shaw 2009

Onjuiste pt populatie

Shin 2014

Beperkt over familiecommunicatie + onjuiste pt populatie

Sobel 2003

Geen familiecommunicatie

Suthers 2006

Geen pt voorkeuren

Tercyak 2002

Met kinderen

Van den Nieuwenhoff 2007

Meer pt perspectief

Wilcke 1999

Onjuiste pt populatie

Ashida 2010

Geen familiecommunicatie

Batte 2015

Geen pt voorkeuren

Bradbury 2012

Met kinderen en geen pt voorkeuren

Bradbury 2009

Geen pt voorkeuren

Bruwer 2013

Geen pt voorkeuren

Claes 2005

Geen pt voorkeuren

Condello 2007

Geen familiecommunicatie/pt voorkeuren

Dagan 2009

Geen familiecommunicatie

Duncan 2010

Geen familiecommunicatie

Dure 2008

Met kinderen en over research participation

Esplen 2007

Geen pt voorkeuren

Fisher 2014

Met kinderen, maar ook geen pt voorkeuren

Forrest Keenan 2015

Geen familiecommunicatie

Forrest 2008

Interventiestudie, zeer beperkte evaluatie

Godino 2016

Geen pt voorkeuren

Graves 2014

Geen pt voorkeuren en research

Gritz 1999

Geen pt voorkeuren/familiecommunicatie

Halbert 2004

Geen familiecommunicatie

Hidayatallah 2014

Geen familiecommunicatie

Ho 2003

Geen familiecommunicatie

Ishii 2011

Geen pt voorkeuren

Jacobs 2015

Geen familiecommunicatie

Kasparian 2006

Meer pt perspectief dan pt voorkeuren en beperkt over familiecommunicatie

Kasparian 2007

Geen familiecommunicatie

Katapodi 2011

Geen pt voorkeuren

Katz 2016

Geen pt voorkeuren

keller 2002

Geen familiecommunicatie

Koehly 2009

Geen pt voorkeuren

Landsbergen 2005

pt voorkeuren zeer beperkt en niet duidelijk gerelateerd aan familiecommunicatie

Lapointe 2013

Niet over familiecommunicatie, maar over sociale steun

Lynch 2014

Geen primair artikel

MacDonald 2007

Geen pt voorkeuren

Mays 2014

Met kinderen en geen pt voorkeuren

McKinnon 2007

Geen pt voorkeuren over familiecommunicatie

Mendes 2011

Geen familiecommunicatie

Mireskandari 2009

Geen familiecommunicatie

Montgomery 2013

Geen pt bevraagd

Nippert 2003

Geen familiecommunicatie

Nycum 2009

Geen primair artikel. Literatuurlijst gecheckt -->geen nieuwe referenties

Ormondroyd 2008

Research resultaten

Ormondroyd 2007

Research resultaten

Peshkin 2010

Met kinderen en geen pt evaluatie van interventie

Rauscher 2015

Geen pt bevraagd/voorkeuren

Riedijk 2005

Geen familiecommunicatie

Rona 1994

Onjuiste pt populatie

Smith 2002

Geen pt voorkeuren

Sobel 2000

Meer pt perspectief dan pt voorkeuren en beperkt over familiecommunicatie

Stefansdottir 2016

Geen familiecommunicatie

Stromsvik 2010

Meer pt perspectief dan pt voorkeuren

Stromsvik 2009

Geen primair artikel. Literatuurlijst wel gecheckt -->geen nieuwe referenties

Subasic 2013

Geen familiecommunicatie + pt voorkeuren

Sussner 2011

Geen familiecommunicatie

Taber 2015

Geen pt voorkeuren

Taylor 2004

Met kinderen en geen pt voorkeuren

Tercyak 2013

Geen pt voorkeuren

Tercyak 2001

Met kinderen en geen pt voorkeuren

Van Oostrom 2007

Geen pt voorkeuren

Vos 2011

Geen pt voorkeuren

Walsh 2012

Geen pt voorkeuren

Yushak 2016

Geen familiecommunicatie

d'Agincourt-Canning 2001

Te lage kwaliteit volgens CASP, zeer beperkte methode sectie