Interactive Journal of Medical Research

Recent literature has discussed the unintended consequences of clinical information technologies (IT) on patient safety, yet there has been little discussion about the safety concerns in the area of consumer health IT. This paper presents a range of safety concerns for consumers in social media, with a case study on YouTube. We conducted a scan of abstracts on ‘quality criteria’ related to YouTube. Five areas regarding the safety of YouTube for consumers were identified: (a) harmful health material targeted at consumers (such as inappropriate marketing of tobacco or direct-to-consumer drug advertising); (b) public display of unhealthy behaviour (such as people displaying self-injury behaviours or hurting others); (c) tainted public health messages (i.e. the rise of negative voices against public health messages); (d) psychological impact from accessing inappropriate, offensive or biased social media content; and (e) using social media to distort policy and research funding agendas. The examples presented should contribute to a better understanding about how to promote a safe consumption and production of social media for consumers, and an evidence-based approach to designing social media interventions for health. The potential harm associated with the use of unsafe social media content on the Internet is a major concern. More empirical and theoretical studies are needed to examine how social media influences consumer health decisions, behaviours and outcomes, and devise ways to deter the dissemination of harmful influences in social media.

Given the inherent complexity of rare paediatric diseases and the sensitive emotional context of the situations they create (due to the patients’ age and the tense uncertainty surrounding the progression of the disease), communication between the adults involved is a key tool in the efforts to provide these children and youths a better quality of life. We conducted ten interviews with families of children with rare diseases, in the aim of exploring how communication between doctors and patients affect their daily lives. All participants, members of FEDER (a Spanish federation of associations of patients with rare diseases) were invited by phone or email to participate in a semi-structured interview including questions on clinical information, communication experiences with healthcare professionals, and the impact these had on the interviewees’ relationships with them. To analyse these interviews, we used the ‘grounded theory’ methodology and open and axial text coding techniques, in addition to those identifying the properties and dimensions of the categories formulated. The core category we have proposed is ‘adjustment of mutual trust’, with said category describing the attitude and behaviour of doctors who inspire trust in the parents of paediatric patients diagnosed with a rare disease. More specifically, said behaviours or sources of trust are: appearing human, sensitive and empathetic; showing transparency and communicative openness; being supportive of parental proactivity; and being available to families at all times. Trust is the cornerstone of parent-doctor communication in the field of children with rare diseases. If the sources of trust are present, they create a degree of trust that bolsters both parties in the search for a common goal: providing the child with the best possible care.

To describe the experience of parents caregiving children with visual impairment (VI), to determine how their quality of life (QoL) is assessed, and to summarize QoL indicators through a review of the literature. A thematic search through PubMed, PsycINFO, ProQuest and ERIC databases was performed of articles published in English in peer-reviewed journals between 1996 and 2016. Publications were included if they referred to both children or adolescents with VI and their parents, or the family context. The complete selection process disclosed 37 papers suitable for review. Researchers mainly used ad hoc interviews and questionnaires to investigate this topic. Two specific tools, the CarCGQoL (congenital glaucoma) and the OTI (congenital cataract), were identified. Most of the information collected referred to the parents' opinion concerning professional services, their needs and worries, the impact of VI on their emotional well-being and the strategies to assist parents to cope and adjust to the situation. The experience of caring for a child with VI is mainly influenced by psychosocial factors. Information and guidance to understand the child's visual condition are insufficient, and the available resources reinforce concerns of caregivers regarding the child's opportunities, expressed as negative emotional reactions.

Introduction: People with disabilities experience loneliness to a greater extent than people without disabilities. To better understand this problem, we have conducted a systematic review of studies that involved disability and loneliness. The aims are to research what loneliness is and to conceptualize and define it in the context of disability, and the intervention strategies that have been developed.Methods: The research protocol is based on the PRISMA guidelines. Two hundred and eighty-one papers were screened and 75 reports were assessed for eligibility.Results: We have not found whether loneliness in disability is a single construct or a collection of various subtypes. We have found that there are protective factors against loneliness in disabled people, such as having a job or living in an environment without physical barriers.Discussion: In terms of the interventions for people with disabilities, the same strategies have been adopted as for the non-disabled: social skills training, enhanced social support, opportunities for interactions, and cognitive training.

In this paper, we propose a vision of the role of parent/caregiver with children affected by a rare disease. This vision is rooted in data obtained from our own research; however, our analysis and interpretation of this data have been subsequently checked against existing theoretical models. The research aims to explore how parents who look after children with a rare disease experience their role as caregivers and how they assimilate their role identity in this task. Semi-structured interviews were performed with parents of 10 children, and a qualitative data analysis was conducted using grounded theory. We have identified ten main categories using a grounded theory approach: stress, disorientation, insecurity, isolation, faith, trust, attention, communication with professionals, private proactivity and public proactivity. Our results also show that when parents perceive a greater burden due to looking after a child with a rare disease, the result is a change in the usual parental role. In our contribution, we offer a general outline of how parents build a role identity centred on caring for a child with a rare disease. We posit that this role identity is the outcome of the parents’ success or failure in gradually overcoming fear through love. We have conceptualized this process as navigating between love and fear.