APTIC: a knowledge repository for parents and caregivers of children with chronic diseases

Manuel Armayones *1, Beni Gómez-Zúñiga*2, Eulàlia Hernández Encuentra *3 Noemí Guillamón Cano*4 Modesta Pousada*5,,Begonya Nafría Escalera*6, Anna Bosque**

*Psychology and Educational Sciences Department. Internet Interdisciplinary Institute (IN3) Psinet Research Group.UOC,

Barcelona, Spain 1marmayones@uoc.edu bgomezzu@uoc.edu

3ehernandez@uoc.edu 4nguillamon@uoc.edu

5mpousada@uoc.edu 6bnafria@uoc.edu

** Espacio de Asociaciones. Hospital Materno Infantil St. Joan de Déu. Esplugues de Llobregat. Barcelona,

abosque@hsjdbcn.org

Abstract—

The APTIC social network has been developed by Psinet research group at the Universitat Oberta de Catalunya, together with the Hospital of St. Joan de Déu,and Fesalud Foundation, and it has beenpartially funded by Tic Salut Foundation (Health Department of the Catalan government). Our social network aims at enabling individual members of patient’s associations (mostly parents of children with chronic and rare diseases) to share experiences, information, advice and, ultimately, to offer them on-line tools to improve the quality of life of the entire family. To access APTIC it is necessary to request a username and password and to fill out a questionnaire on personal data and motives for accessing APTIC. Simultaneously, we launched a Facebook group through which the facilitator made the platform known to various associations, and encouraged them to join APTIC. We carried out in-depth interviews with six APTIC users. We describe the dimensions and opinions that emerged in the content analysis of interviews: User motivation to use of APTIC, evaluations of contents, advantages over Facebook and opinion about the role of the facilitator in APTIC

I. INTRODUCTION

Though networks of people are part of everyone’s personal and professional lives, they take on special significance for the aging, the disabled and the chronically ill [1]. The associations of patients and

their relatives are particularly aware of the fact that collective action is necessary to improve, as much as possible, the quality of life of people with a particular health condition [2].v From the point of view of the health system, knowledge created by patients and their families is of non-expert nature. However, it clearly embodies the experience of living with the illness (about which healthcare professionals usually does not have direct experience) by forming partnerships with health professionals [3, 4] or having impact on health policies [5, 6, 7, 8]. While the healthcare system is obviously concerned with improving the quality of care, no evidence base for the effects of the use of services, quality of care, satisfaction, or health of patients has been created from a systematic review of the effects of involving patients in the planning and development of health care [9]. In this framework, where the balance in shared responsibilities is shifting over time to patients and their families, and requires continued learning and keeping up to update with treatments, self-care and scientific findings [10], the number of associations

for patients, healthcare-users and caregivers is increasing exponentially [11]. These associations argue that the health system should be designed to meet the needs and preferences of patients [12], and, to this end, they have made various proposals for declarations, such as the Barcelona Declaration of Patients' Associations, the Spanish Patient Forum [13] or the Declaration on-patient centered healthcare from the Alliance of Patients' organizations [14].

An example of an innovative initiative for collaboration between patients associations and the health system is the Associations Area at the Sant Joan de Déu Pediatric Hospital in Barcelona (Spain). This is a physical space, managed by the hospital, where patients' associations can meet and provide information and support to patients and their families, using the center’s resources and facilities. Thus, this area is configured not only as an ideal environment for intervention, but also for the evaluation of the processes that take place there. This is why this Hospital was choosen to develop the APTIC project, The APTIC social network has been developed by PSiNET research group at the Universitat Oberta de Catalunya together with Hospital de St. Joan de Déu and Fesalud Foundation, and it has been partially funded by Tic Salut Foundation (health department of the Catalan government). Our social network aims at enabling the individual members of patients’ associations (mostly parents of children with chronic and rare diseases) to share experiences, information, advice and, ultimately, to offer them on-line tools to improve the quality of life of the entire family. Participation in specialized social networks, like APTIC, offers a great opportunity to use technology with low cost and with a large impact on health to improve quality of life. From the health psychology perspective, variables such as the perception of self-efficacy, empowerment, and social support are key to improve quality of life. We are examining these variables and network usage in order to establish whether social networks are indeed useful for parents.

Our social network has been built on open source software and through collaborative work between organizations:the hospital itself, patients' associations, and individual users. We will offer our first results and some thoughts about the work with patients and families through social networks. Our goal is to enhance their positive effects. But we consider that is impossible to analyze the isolated effect of one health social network like APTIC. Usually, users are linked to more than one network, and we think that we must consider the “personal network experience” of each user, instead of the “APTIC experience”. In our paper we will try to analyze the different use for health purposes of two social networks: Facebook and APTIC.

II. METHODS

We perform a qualitative and quantitative analysis on data from two sources: in one hand, a qualitative analysis of in-depth interviews; on the other, the analysis of quantitative data on access and users behavior in APTIC.

In the qualitative analysis, a sample of six APTIC users participated in interviews through instant messaging. Thematic coding with constant comparison was used for interview transcript. Participants were selected among the most active users of APTIC because the high level of participation was an inclusion criterion. Another inclusion criterion was to have an active account in Facebook and to use Facebook for health purposes. All users interviewed were seeking help for others, because they were parents of children with a chronic disease. The facilitator of the social network conducted interviews, and a group of three researchers, who were members of the research team but, other than that, had no relationship with the subjets.

Socio-demographic data analysis of APTIC users. Analysis of data from Google Analytics and analysis of user behavior data extracted through different pluggins for Elgg.

III. RESULTS

We analyzed the transcripts of interviews for emerging themes concerning four dimensions:

a) User motivation to use of APTIC b) Evaluations of contents c) Advantages over Facebook d) Opinion about the role of facilitator in APTIC We describe the main results of each dimension

with transcripts of different users:

a) User motivation to use of APTIC

They use APTIC to ask questions to other parents with kids with the same condition, to find support and help, and as a way to meet other families that can share information about the disease. They consider that the privacy of APTIC allows users to have a “private” space for personal purposes. Users say: U4:“For health issues, I prefer closed networks” U3: “With APTIC I don't feel alone”. U2: “Users of this network have in common a relative (particularly children) with a disease ... and these are not things to talk openly to just anyone ... U2: “Contacts with other mothers of children suffering of X are only through APTIC and not with FB”

b) Evaluations of contents.

They consider that APTIC allows an easy access to content and resources about different diseases and disabilities. They appreciate the advantage (with respect to Facebook) to ba able to organize the information in different groups, and with different tools (blogs, web pages, uploading text files, uploading video, open forums, creating bookmarks, etc.) Users say:

U2... “If I want to search for "serious" content, I prefer APTIC ...” U3:… APTIC contents are good, interesting and useful.”

c) Advantages/Disadvantages over Facebook The users value positively the privacy of our network. This is a key element because they feel that in Facebook they are less likely to find “real solidarity” and real support from other people like them. In APTIC, they find “clear and real altruism in a social network”. APTIC is a non-profit project, without publicity, and it is absolutely free. Users consider this to be evidence of “real altruism”. Another advantage is the fact that APTIC is hosted in the St. Joan de Déu’s servers, and, in the case of Facebook, users don’t know where is hosted their personal information. The main disadvantages are that in Facebook you can find more users, more connected people, and information can be spread easily. Users say: U1:“APTIC is for personal purposes; FB for social purposes” U2: “I don't like FB, actually, but all the people are in FB” U3 “In APTIC I don't upload pictures of my holidays. In Facebook I don't write like I write in APTIC”.

d) Opinion about the role of facilitator in APTIC

APTIC has a facilitator, a professional that offers guidance, information, advice about the use of the social network (creating groups, solving technical problems, giving advice about different possibilities, etc.)

Users say that the facilitator has a key role to build trust and confidence about APTIC and increase the chances that there are professionals behind. U2: "APTIC has a team that manages and coordinates the network. It has a much more professional and serious structure”. U1 “I think it's that the work you develop as a motivator is vey important. Having professionals behind the network increases confidence”.

IV. CONCLUSIONS

In its first year of activity, APTIC has become a reservoir of information about disabilities and rare diseases affecting children and teenagers. Thus, APTIC adds value to its users because the information included in the social network becomes knowledge available to all members.

However, and contrary to what we expected, APTIC has not developed into forums, a space for dialogue or exchange of personal experiences, but into repository of information. Users evaluate very positively the structure of the platform and the possibility to save the information.

Moreover, social networks such as Facebook have become the main way of promotion and dissemination most users have learned about the network through Facebook.

Parents and families are using our social network in ways different from those originally planned, and we need to continue adapting it to their needs and actual use. APTIC is becoming something a “collaborative workspace” (a space for uploading videos, files, etc.), ratherthan a space for “social relations”.

Users (nov 2011): 421 Mail messages between users:

21681

Bookmarks: 483 File uploads: 291 Videos: 277

Blogs entries: 152 Events in Calendar: 129 Forums Topics : 71 Quotes of the day: 65 Messages in friend's wall: 734

Figure 1: Description of use of APTIC

ACKNOWLEDGMENT

The authors want to thank Hospital St. Joan de Deú, Fundació TIC-SALUT (Health Department Catalonia Government) and Fundación Fesalud for their contribution to our project.

REFERENCES

1. Fox S. Participatory Medicine: Text of my speech at the Connected Health symposium. 2008 Nov 3. URL: http://e-patients.net/archives/2008/11/participatory-medicine-text-of-my-speech-at-the-connected-health-symposium.html. Archived at: http://www.webcitation.org/5sjuF9DxZ 2. Department of Health. Patient and Public Involvement in Health: The Evidence for Policy Implementation. London: Department of Health Publications;2004. URL: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4082334.pdf. Archived at: http://www.webcitation.org/5sjuM9lib http://www.webcitation.org/5sjuM9lib 3. Ferguson T. Online patient-helpers and physicians working together: a new partnership for high quality health care. BMJ 2000 Nov 4;321(7269):1129-32. 4. Lorig KR, Holman H. Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med 2003 Aug; 26(1):1-7. 5. Fundación Farmaindustria. El paciente en España. Mapa nacional de asociaciones de pacientes. URL:http://www.farmaindustria.es/idc/groups/public/documents/publicaciones/farma_1071.pdf.

Retrieved at: http://www.webcitation.org/5sjuWt4bh http://www.webcitation.org/5sjuWt4bh8. 6.García-Sempere A, Artells J. Organización, funcionamiento y expectativas de las organizaciones representativas de pacientes. Encuesta a informadores clave. Gaceta Sanitaria 2005; 19 (2): 120-126. 7. Quennell P. Getting a Word in edgeways? Patient group participation in the appraisal process of the National Institute for Clinical Excellence. Clinical Governance: an International Journal 2003; 8(1): 39-45. 8. Herxheimer A. Relationships between the pharmaceutical industry and patients’ organisations. British Medical Journal 2003; 326 (7400), 1208-1210.

9 Crawford MJ, Rutter D, Manley C, Weaver T, Bui J, Fulop N, Tyrer P. Systematic review of involving patients in the planning and development of health care. BMJ 2002 Nov; 325: 1-5. 10. Brink SJ, Miller M, Moltz KC. Education and multidisciplinary team care concepts for paediatric and adolescent diabetes mellitus. J Pediatr Endocrionol Metab 2002; 15 (8): 1113-1130. 11. Baggott R, Forster R. Health consumer and patients’ organizations in Europe: towards a comparative analysis. Health Expectations. 2008; 11(1): 85-94. 12. Web pacientes. URL: http://www.webpacientes.org/fep/. Retrieved at: http://www.webcitation.org/5skylOVmr