Paper Beni Gómez - APTIC: a knowledge repository for parents and caregivers of children with chronic diseases


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Paper Beni Gómez - APTIC: a knowledge repository for parents and caregivers of children with chronic diseases

  1. 1. 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 1 3 4 5 6 ** Espacio de Asociaciones. Hospital Materno Infantil St. Joan de Déu. Esplugues de Llobregat. Barcelona, abosque@hsjdbcn.orgAbstract— their relatives are particularly aware of the fact that collective action is necessary to improve, as muchThe APTIC social network has been developed by Psinet as possible, the quality of life of people with aresearch group at the Universitat Oberta de Catalunya, togetherwith the Hospital of St. Joan de Déu,and Fesalud Foundation, particular health condition [2].vand it has beenpartially funded by Tic Salut Foundation (HealthDepartment of the Catalan government). Our social network From the point of view of the health system,aims at enabling individual members of patient’s associations(mostly parents of children with chronic and rare diseases) to knowledge created by patients and their families isshare experiences, information, advice and, ultimately, to offer of non-expert nature. However, it clearly embodiesthem on-line tools to improve the quality of life of the entire the experience of living with the illness (aboutfamily.To access APTIC it is necessary to request a username and which healthcare professionals usually does notpassword and to fill out a questionnaire on personal data and have direct experience) by forming partnershipsmotives for accessing APTIC. Simultaneously, we launched a with health professionals [3, 4] or having impact onFacebook group through which the facilitator made the platformknown to various associations, and encouraged them to join health policies [5, 6, 7, 8]. While the healthcareAPTIC. system is obviously concerned with improving theWe carried out in-depth interviews with six APTIC users. We quality of care, no evidence base for the effects ofdescribe the dimensions and opinions that emerged in the contentanalysis of interviews: User motivation to use of APTIC, the use of services, quality of care, satisfaction, orevaluations of contents, advantages over Facebook and health of patients has been created from aopinion about the role of the facilitator in APTIC systematic review of the effects of involving patients in the planning and development of health care [9]. I. INTRODUCTIONThough networks of people are part of everyone’s In this framework, where the balance in sharedpersonal and professional lives, they take on special responsibilities is shifting over time to patients andsignificance for the aging, the disabled and the their families, and requires continued learning andchronically ill [1]. The associations of patients and keeping up to update with treatments, self-care and scientific findings [10], the number of associations
  2. 2. for patients, healthcare-users and caregivers is Our social network has been built on open sourceincreasing exponentially [11]. These associations software and through collaborative work betweenargue that the health system should be designed to organizations:the hospital itself, patientsmeet the needs and preferences of patients [12], and, associations, and individual this end, they have made various proposals for We will offer our first results and some thoughtsdeclarations, such as the Barcelona Declaration of about the work with patients and families throughPatients Associations, the Spanish Patient Forum social networks. Our goal is to enhance their[13] or the Declaration on-patient centered positive effects. But we consider that is impossiblehealthcare from the Alliance of Patients to analyze the isolated effect of one health socialorganizations [14]. network like APTIC. Usually, users are linked to more than one network, and we think that we mustAn example of an innovative initiative for consider the “personal network experience” of eachcollaboration between patients associations and the user, instead of the “APTIC experience”.health system is the Associations Area at the Sant In our paper we will try to analyze the different useJoan de Déu Pediatric Hospital in Barcelona (Spain). for health purposes of two social networks:This is a physical space, managed by the hospital, Facebook and APTIC.where patients associations can meet and provideinformation and support to patients and their II. METHODSfamilies, using the center’s resources and facilities.Thus, this area is configured not only as an ideal We perform a qualitative and quantitativeenvironment for intervention, but also for the analysis on data from two sources: in one hand, aevaluation of the processes that take place there. qualitative analysis of in-depth interviews; on theThis is why this Hospital was choosen to develop other, the analysis of quantitative data on accessthe APTIC project, and users behavior in APTIC. In the qualitative analysis, a sample of six APTICThe APTIC social network has been developed by users participated in interviews through instantPSiNET research group at the Universitat Oberta de messaging. Thematic coding with constantCatalunya together with Hospital de St. Joan de comparison was used for interview transcript.Déu and Fesalud Foundation, and it has been Participants were selected among the most activepartially funded by Tic Salut Foundation (health users of APTIC because the high level ofdepartment of the Catalan government). Our social participation was an inclusion criterion. Anothernetwork aims at enabling the individual members of inclusion criterion was to have an active account inpatients’ associations (mostly parents of children Facebook and to use Facebook for health purposes.with chronic and rare diseases) to share experiences, All users interviewed were seeking help for others,information, advice and, ultimately, to offer them because they were parents of children with aon-line tools to improve the quality of life of the chronic disease.entire family. The facilitator of the social network conductedParticipation in specialized social networks, like interviews, and a group of three researchers, whoAPTIC, offers a great opportunity to use technology were members of the research team but, other thanwith low cost and with a large impact on health to that, had no relationship with the subjets.improve quality of life. From the health psychology Socio-demographic data analysis of APTIC users.perspective, variables such as the perception of self- Analysis of data from Google Analytics andefficacy, empowerment, and social support are key analysis of user behavior data extracted throughto improve quality of life. We are examining these different pluggins for Elgg.variables and network usage in order to establishwhether social networks are indeed useful for III. RESULTSparents.
  3. 3. We analyzed the transcripts of interviews for U2... “If I want to search for "serious"emerging themes concerning four dimensions: content, I prefer APTIC ...” a) User motivation to use of APTIC U3:… APTIC contents are good, interesting b) Evaluations of contents and useful.” c) Advantages over Facebook d) Opinion about the role of facilitator in APTIC c) Advantages/Disadvantages over Facebook We describe the main results of each dimensionwith transcripts of different users: The users value positively the privacy of our network. This is a key element because they a) User motivation to use of APTIC feel that in Facebook they are less likely to find “real solidarity” and real support from They use APTIC to ask questions to other other people like them. In APTIC, they find parents with kids with the same condition, “clear and real altruism in a social network”. to find support and help, and as a way to APTIC is a non-profit project, without meet other families that can share publicity, and it is absolutely free. Users information about the disease. consider this to be evidence of “real altruism”. They consider that the privacy of APTIC Another advantage is the fact that APTIC is allows users to have a “private” space for hosted in the St. Joan de Déu’s servers, and, personal purposes. in the case of Facebook, users don’t know where is hosted their personal information. Users say: The main disadvantages are that in Facebook U4:“For health issues, I prefer closed you can find more users, more connected networks” people, and information can be spread easily. U3: “With APTIC I dont feel alone”. U2: “Users of this network have in common Users say: a relative (particularly children) with a disease ... and these are not things to talk U1:“APTIC is for personal purposes; FB for openly to just anyone ... social purposes” U2: “Contacts with other mothers of children suffering of X are only through U2: “I dont like FB, actually, but all the APTIC and not with FB” people are in FB” U3 “In APTIC I dont upload pictures of my holidays. In Facebook I dont write like I b) Evaluations of contents. write in APTIC”. They consider that APTIC allows an easy access to content and resources about different diseases and disabilities. d) Opinion about the role of facilitator in They appreciate the advantage (with respect APTIC to Facebook) to ba able to organize the information in different groups, and with APTIC has a facilitator, a professional that different tools (blogs, web pages, uploading offers guidance, information, advice about the text files, uploading video, open forums, use of the social network (creating groups, creating bookmarks, etc.) solving technical problems, giving advice about different possibilities, etc.) Users say:
  4. 4. Users say that the facilitator has a key role to Blogs entries: 152 build trust and confidence about APTIC and Events in Calendar: 129 increase the chances that there are Forums Topics : 71 Quotes of the day: 65 professionals behind. Messages in friends wall: 734 Figure 1: Description of use of APTIC U2: "APTIC has a team that manages and coordinates the network. It has a much more ACKNOWLEDGMENT professional and serious structure”. U1 “I think its that the work you develop as a The authors want to thank Hospital St. Joan de Deú, motivator is vey important. Having Fundació TIC-SALUT (Health Department professionals behind the network increases Catalonia Government) and Fundación Fesalud for confidence”. their contribution to our project. REFERENCES IV. CONCLUSIONS 1. Fox S. Participatory Medicine: Text of my In its first year of activity, APTIC has become a speech at the Connected Health symposium. 2008reservoir of information about disabilities and rare Nov 3. URL:diseases affecting children and teenagers. Thus, adds value to its users because the medicine-text-of-my-speech-at-the-connected-information included in the social network becomes health-symposium.html.knowledge available to all members. Archived at: However, and contrary to what we expected, has not developed into forums, a space fordialogue or exchange of personal experiences, but 2. Department of Health. Patient and Publicinto repository of information. Users evaluate very Involvement in Health: The Evidence for Policypositively the structure of the platform and the Implementation. London: Department of Healthpossibility to save the information. Publications;2004. URL: Moreover, social networks such as Facebook become the main way of promotion and digitalassets/@dh/@en/documents/digitalasset/dh_4dissemination most users have learned about the through Facebook. Archived at: Parents and families are using our social network ways different from those originally planned, andwe need to continue adapting it to their needs and 3. Ferguson T. Online patient-helpers andactual use. APTIC is becoming something a physicians working together: a new partnership“collaborative workspace” (a space for uploading for high quality health care. BMJ 2000 Novvideos, files, etc.), ratherthan a space for “social 4;321(7269):1129-32.relations”. 4. Lorig KR, Holman H. Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med 2003 Aug; 26(1):1-7.Users (nov 2011): 421Mail messages between 21681 5. Fundación Farmaindustria. El paciente en España.users: Mapa nacional de asociaciones de pacientes.Bookmarks: 483 URL: uploads: 291 c/documents/publicaciones/farma_1071.pdf.Videos: 277
  5. 5. Retrieved at: 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: 1-5.6.García-Sempere A, Artells J. Organización,funcionamiento y expectativas de las 10. Brink SJ, Miller M, Moltz KC. Education andorganizaciones representativas de pacientes. multidisciplinary team care concepts for paediatricEncuesta a informadores clave. Gaceta Sanitaria and adolescent diabetes mellitus. J Pediatr2005; 19 (2): 120-126. Endocrionol Metab 2002; 15 (8): 1113-1130.7. Quennell P. Getting a Word in edgeways? Patient 11. Baggott R, Forster R. Health consumer andgroup participation in the appraisal process of the patients’ organizations in Europe: towards aNational Institute for Clinical Excellence. Clinical comparative analysis. Health Expectations. 2008;Governance: an International Journal 2003; 8(1): 11(1): 85-94.39-45. 12. Web pacientes. URL:8. Herxheimer A. Relationships between the Retrieved at:pharmaceutical industry and patients’ organisations. Medical Journal 2003; 326 (7400), 1208-1210.