Internet use by the families of cancer patients—help for disease management?
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- Kirschning, S., von Kardorff, E. & Merai, K. J Public Health (2007) 15: 23. doi:10.1007/s10389-006-0070-4
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Not only the people with a disease but also their family members are increasingly investigating illness-relevant subjects on the Internet. The focus of this article deals with the questions: Why do family members conduct research on the net? Do they use the net for themselves or do they pass on internet-based information to the patients? How does the information passed on influence therapy decisions? The question of how the relatives of women with breast cancer and men with prostate cancer research illness-related subjects was examined by means of an online questionnaire. The survey comprised a total of 113 participants. Those surveyed came from Germany (93%), Austria (2%) and Switzerland (2%). The family members used the Internet primarily to inform themselves (91%) but also to convey information further to the sick person (78%). Approximately 40% said that the internet information they had found influenced treatment-relevant decisions. The main conclusions are that families judge the Internet as a great help and often do research for ill people who are not confident with this medium. Use of the Internet for illness-relevant information thus leads more often to reinforcement of the decision concerned than to non-compliance.
KeywordsCancer patientsFamily membersInternet useHealth-related internet informationOnline survey
Over the past years the Internet has developed into an important source of health- and disease-relevant information. The offerings of E-Health on the World Wide Web are significantly increasing, and, in the meantime, a large part of the population uses the Internet to inform themselves about illnesses, treatment possibilities, etc. Although the study “The Europe Patient of the Future” still states “Our telephone survey demonstrated that the internet is still relatively insignificant as a source of health information for European patients” (Coulter and Magee 2003, p. 247), only 10% gave the Internet as their first source of information for new treatment possibilities and 84% of the total population named the doctor as their first source of information of this kind (ibid. 2003 pp. 211ff)—already, in 2002, two-thirds of all US Internet users “prefer the Internet to their personal physician when it involves the choice of diagnostic or therapeutic methods” (Cap Gemini Ernst & Young U.S. cited in Jähn and Strehlow 2004 p. 851). Additionally, more than a third there used the net to inform themselves about kinds of cancer (cp. Satterlund et al. 2003).
While Internet usage by ill people is being increasingly investigated in a differentiated way (for example, Broom 2005; Pereira et al. 2000; Ziebland et al. 2001), the net usage by families of cancer patients—or people with general chronic illnesses—has, to a large degree, not been researched as yet. For quite a few years, however, the relatives themselves have been trying to make themselves heard and they expressly indicate that the Internet has been a valuable support (for example, http://www.alzheimerforum.de). User analyses by websites confirm their net presence. The website of the Cancer Services of the University of Pennsylvania, an important online offering for cancer patients and their relatives within the United States of America, showed in 2002 that more family members belonged to their main user group of this service than patients. While a third of the users were family members of patients, the user group of patients themselves was, at 16%, significantly smaller (cp. Scheiber and Gründel ibid. 2000). Statistics from the German Cancer Information Service (KID) for usage in 2002 also show that the interest of family members was higher than that of the patients (relatives: 47.2%, patients, 41.9%) (cp. Gaisser 2004 p. 35).
Those results are not surprising when one considers that near relations not only have to deal with the illness of a person but also with their own life changes and fears. This is because cancer affects the sum total of their lives. For several years the results of various investigations have confirmed that the partners of cancer patients are often more strongly psychologically affected than the patients themselves (cp. for example, Faller et al. 1995 p. 153; Verres 1996 p. 191; Schulz et al. 1998; a critical evaluation of the current stand of research is offered by Schönberger and von Kardorff 2004 p. 24).
While the patients receive attention, professionals and the social surroundings often do not recognise the need for help among the relatives. Only in exceptional cases do they also receive support from physicians in dealing with medical aspects of the illness, both in view of the consequences of the illness in their relationship with the patient, as well as managing their own fears. This situation stands against various studies on the need for help of family members that show that “family members want to be informed, involved, sometimes instructed and psychologically supported during the entire course of illness” (Schönberger and von Kardorff 2004 p. 23).
The focus of this article lies on the Internet usage of the family members and deals with the questions: Why do the family members conduct research on the net? Do they use the net for themselves or do they pass on Internet-based information to the patients? How does the information passed on influence the therapy decisions?
The online questionnaire that forms the basis of this article was carried out from October 2003 to April 2004. It was focused on the internet use of family members of women with breast cancer and men with prostate cancer (n=113).2 This seems to be a low number of participants, but those surveyed belonged to a group that is hard to reach. The conception of the questionnaire was not guided by hypothesis, because it was a new area of research. So, it is an exploratory study. Carrying out the online questionnaire took place in three steps: first, the questionnaire was developed. Because of the explorative nature of the study, most variables had a nominal scale level. For this reason a predominantly descriptive evaluation took place. This was followed by its Internet-appropriate preparation and advertising for respondents, including links with existing offers on the net (for example, http://www.inkanet.de, http://www.europadonna.de) (in detail, Kirschning et al. 2004 pp. 162 ff). The questionnaire for the family members was subdivided into five subject blocks: introductory questions (1), information search (2), experiences and dealing with information (3), communication with the ill and with physicians (4), and socio-demographic data (5).
The respondents found the questionnaire by chance, by a mouse click on the net or through advertisements in the printed media. They took the initiative themselves and participated. Because of the self-selection a selection-bias may have occurred. However, as a consequence of the relative small study population, it has not been taken into account. With online questionnaires the claim for representativeness is generally considered to be hard to accomplish, because the population is rarely known (cp. Janetzko 1999 p. 145). A random sample survey is characterised so that the meaning of the results can be evaluated.
Characteristics of the respondents
More than half of the respondents were between 40 years and 60 years old.
Significantly more than half of the respondents were employed; only one out of five women questioned was a housewife. This result is not surprising, because “onliners” have often learned to use the Internet in the context of their job activities.
The respondents lived overwhelmingly in a partnership, somewhat more than half lived in a family.
Half of the respondents had a household income of over €2,500/month.
In what way were the respondents related to those for whom they sought information on the Internet?
Relationship with person for whom research was done
Relationship with person for whom research was done
Gender of relative
Mother/father or mother-/father-in-law
Because the closeness of the relationship inevitably cannot be judged from the family relationship, the effects of the disease on the life of the respondents was queried. For each fifth person, life had fundamentally changed because of the disease (21%). With significantly more than half, the disease influenced their own lives (63.7%). The disease had little effect on only 11.5%, and for only 3.5%, no effect on their own lives.
The respondents were, thus, predominantly familiar with the situation in which the sick person was living. Of the respondents, 87% saw themselves as involved in the treatment decisions. Of the family members, 83% participated actively in decisions in the course of treatment. Somewhat more than half were present at at least one medical consultation (54%), approximately each second woman and each fifth man. Two-thirds stated that they were active participants in these consultations, and only a fifth declared that this consultation mainly took place between the doctor and the ill person. Almost half of all the respondents even consulted a physician without the presence of the sick person.
A certain scepticism among the respondents regarding the quality of the medical treatment can be interpreted: fewer than half of the family members believed that the correct treatment was chosen (47.3%). Only a third answered “yes” to the question of whether the disease had been recognised in time (31.3%).
Most of the respondents had done the research for patients whose state of health had worsened (34%); somewhat fewer had done the research for patients who were currently having treatment (30%). This was followed by research for those who had just finished acute treatment (28%), and in fourth place were those respondents whose experiences were related to collecting information for people who in the meantime had died (13%).
Seen as a whole, the results relate to a spectrum of people who had experiences with all disease phases.
What did the family members use the Internet for?
The family members used the Internet primarily to inform themselves (91%) but also to convey information to the sick person (78%). Often, they researched for a patient who was not familiar with the medium (60%). What is very likely playing a role here is that the quota of those who use the Internet significantly decreases with age (cp. (N) Onlineratlas 2005) and both the selected illnesses—particularly prostate cancer—are diseases of aging.
How was the important information handled?
Most of the respondents printed out the important information (86%). Half set up a collection (50%). Each fifth respondent mailed or e-mailed the information to the patient.
This shows that most of the responding family members did not do research sporadically for a person but, rather, conduct focused research over a longer period.
On which subjects did family members search for information on the Internet?
Proceeding from a health concept that is not only limited to the pathology of the body and its healing, but also covers all aspects of life that could be influenced by the illness, questions were asked that involved not only medical treatment, but also psychosocial aspects of the illness and legal aspects. The item list comprised 20 possible answers from which the respondents chose the subjects that they saw as the most important. Medical themes were in the first four positions: possible therapies was the most frequently asked subject area (88%), followed by interest in information about the course of disease (69%), healing-promoting measures (66%) and alternative healing methods (62%).
More than half of the relatives were interested in information on the psychological effects of the illness (55%), the long-term consequences of the illness (53%) and the choice of physician and clinic (53%). Half of the respondents wanted information on dealing with the patients (50%).
Those who accompanied their relatives to medical consultations were asked about which subjects were missing from the consultations. Only each seventh person stated that nothing was missing (13%). Approximately half missed consultation offerings about psychological burdens (54%), about the course of illness (53%) and about long-term consequences of the illness (49%). Around a third would have liked more information on the side effects of therapies (38%), further treatment possibilities (38%), on their own emotional situation (36%) and on dealing with the sickness within the family context (36%) as well as dealing with the patient (36%).
While interest in medical information dominated the net research, within the medical consultation most of the respondents expected attention to psychosocial matters next to the sharing of medical information.
Usage of illness-related forums and chatrooms
Nearly two-thirds of the respondents knew of illness-related forums and chatrooms. Each fifth person participated in the discussions (21%). Most, however, were “lurkers”, only reading the commentaries of others (35%).
The opportunities to obtain medical information were especially valued with this option (73%). In second place was communication about fears (61%), followed by the support received there (46%). Over a third used forums and chatrooms because they received information tailored to their own situation (36%) and were enabled to deal with their behaviour toward the sick person (36%).
This also showed a strong interest in medical subjects, but, at the same time, there was a clear wish to think about their own life situations and to discuss their relationship with the sick person.
Influence of Internet information on treatment-relevant decisions
A good third of the responding relatives said “yes” to the question of whether the information found by them on the Internet influenced treatment-relevant decisions (40%). Almost a further third (30%) answered this questions with “partially”. Therefore, it can be assumed that a total of at least half of the respondents attributed an influence on therapy decisions to the information conveyed. Likewise, a third allotted no importance to their research. This information contributed primarily to the continuation of an already chosen therapy (39%) or to the starting of further therapy (23%). Each fifth sick person began a parallel treatment on the basis of the information (21%). To a significantly smaller degree, this information led to cessation of therapy (16%) or not beginning physician-recommended therapy (14%).
The use of the Internet for illness-relevant information thus led more often to reinforcement of the decision concerned than to non-compliance.
Physician reactions to the integration of Internet-based information
Half of the respondents integrated Internet information into a medical consultation (56%). Significantly more than half produced a printout of the information they wanted to talk about (62%). Those respondents tried actively to involve the physicians in the interpretation of the information. The detectable reactions were surprising. Fewer than half noticed an interested reaction from the physician (41%).
General communication problems in the physician–patient–relative relationship are possibly shown here that should be analysed independently from Internet usage. Other reasons for this should be considered: perhaps the physicians addressed were not familiar with the medium, or they refused to use it because they felt controlled. The topicality and specificity of the information probably overwhelmed them, especially when it was presented in a foreign language. Many physicians may have hardly thought about appropriate reactions.
These differing aspects can clarify why, with a third of the respondents, there was the predominating impression that the physician was overwhelmed (36%).
Corbin and Strauss (1988) investigated coping strategies of relatives from a sociological and health care perspective. They brought the concept of work into scientific discussion. The behaviour of the relatives was looked at under three primary aspects within the work concept. One was aimed at the illness, the second at the biography and the third at everyday life. All three components were aimed at the re-establishment of the equilibrium (ibid. 1988 pp. 76ff); they proceed in processes that influence each other.
This poll of Internet usage shows that the Internet used for coping works in relation to all three components. The respondents researched subjects that belong to illness-related work. (1) They provided themselves with information on medical aspects of cancer; many conveyed it further and discussed it with the patient. In this context a marked interest in conventional medical subjects becomes clear. The reasons for this have to be ascertained in a differentiated way. It can be guessed, however, that the variety of possible therapies, the differing interpretations about appropriate treatments within medicine and the lack of transparency over the quality of those treatments contributed to the large number of inquiries.
Furthermore, a great interest in Internet usage for psychological relief and support was evident. The respondents used chatrooms and forums in particular for biographical work (2): they communicated about changes that they themselves directly experienced and changes in their relationship with the ill person. This kind of coping contributed to their managing their fears and supported the constructive new structuring of their lives (cp. for example, Broom 2005).
Among the partners of women with breast cancer, 25–50% had stress reactions that had disease status (cp. Hautzinger and Janssen 1995 p. 315)3; consequently, the partner of a cancer patient can “not automatically be considered as a support system” but, rather, must be seen “more as a burdened individual who him- or herself needs psychosocial help” (Baider et al. cited in Faller et al. 1995 p. 143). In view of this fact, particular services on the net for relatives should be considered. The respondents would have liked more support, especially during the diagnosis phase (70%).
Besides whatever offering could be developed, though, it can be ascertained that the existing offerings as a whole were judged positively. The respondents clarified not only a number of questions over the Internet (69%) and often found the information that they were looking for (68%), but also this research triggered important conversations (62%). And, this was often helpful in dealing with the ill person (60%) and eased everyday work (3). Particularly valued were: the variety on the net (96%), its easy accessibility (87%), the time independence of its usage (67%) and the opportunity to converse with others who were affected (59%).
Theoretically possible negative consequences of net usage—for example, that the information could result in arguments with the sick person (6%)—were hardly mentioned. Instead, 92% answered positively the question, “Have you experienced the Internet in your situation as helpful?” The result from the question “Where do you find support for coping with your life situation?” is meaningful in this context. The Internet followed in third place (41%) after family (78%) and personal values (53%). Its significance is more than that of religion (19%), physicians (16%) and specialists (10%).
There are opportunities wasted that are not recognised or used. Starting from the needs of relatives, concepts could be developed to exploit the technical possibilities that this medium provides.
Summing up, this explorative study shows that health-related Internet use is helpful for the majority. We assume that the questionnaires reached predominantly engaged relatives who had use of several resources that are necessary to obtain tailored information. Therefore, it would be interesting to analyse a representative sample. Maybe then the opinion about health-related Internet use would not be as positive as in this explorative study.
The original source on the Net was no longer accessible (14 July 2005).
The whole study contains three groups: family members, women with breast cancer (n=370) and men with prostate cancer (n=193).
No comparable investigation of the partners of men with prostate cancer is known to us, but one can assume that the results would turn out similarly.
This study was funded by the German Research Foundation (Deutsche Forschungsgemeinschaft, DFG). The study took place at the Institute for Rehabilitation Sciences at Humboldt University in Berlin.