Donna Macan Yadrich

Creating patient and family education web sites: design and content of the home parenteral nutrition family caregivers web site.

When managing chronic illnesses, caregivers repeatedly seek online information about providing complex, long-term care but often neglect to find information about how to care for themselves. Poor health among caregivers is not only detrimental to their own well-being but may also result in harm to those for whom they care. For this reason, caregivers need access to information and activities about caring for themselves in addition to the information about managing home care they are already likely to seek. The HPN Family Caregivers Web site was developed to guide caregivers through the process of caring for themselves by establishing a caregiving routine, self-monitoring their mental and physical health, and practicing good sleep hygiene, while also managing the complexities of home care. While Web site information, activities, and algorithms for managing chronic illnesses need to be specific to each population, the content guiding caregivers to care for their own health is universal.

Creating Patient and Family Education Web Sites Assuring Accessibility and Usability Standards

This article gives details about the methods and processes used to ensure that usability and accessibility were achieved during development of the Home Parenteral Nutrition Family Caregivers Web site, an evidence-based health education Web site for the family members and caregivers of chronically ill patients. This article addresses comprehensive definitions of usability and accessibility and illustrates Web site development according to Section 508 standards and the national Health and Human Services’ Research-Based Web Design and Usability Guidelines requirements.

A Clinical Trial of Translation of Evidence Based Interventions to MobileTablets and Illness Specific Internet Sites

This article describes a method to translate an evidence based health care intervention to the mobile environment. This translation assisted patient participants to: avoid life threatening infections; monitor emotions and fatigue; keep involved in healthy activities. The mobile technology also decreased costs by reducing for example travel to visit health care providers. Testing of this translation method and its use by comparison groups of patients adds to the knowledge base for assessing technology for its impact on health outcome measures. The challenges and workflow of designing materials for the mobile format are described. Transitioning clinical trial verified interventions, previously provided in person to patients, onto tablet and internet platforms is an important process that must be evaluated. In this study, our evidence based guides intravenous (IV) homeCare interventions (IVhomeCare) were delivered via Apple iPad mini™ tablet audiovisual instruction / discussion sessions and on a website. Each iPad audiovisual session (n = 41), included three to five families, a mental health specialist, and healthcare professionals. Patients and their family caregivers readily learned to use the wireless mobile tablets, and the IVhomeCare interventions, as described here, were successfully translated onto these mobile technology platforms. Using Likert scale responses on a questionnaire (1 = not helpful and 5 = very helpful) participants indicated that they gained problem solving skills for home care through iPad group discussion (M = 4.60, SD = 0.60). The firewall protected videoconferencing in real time with multiple healthcare professionals effectively allowed health history taking and visual inspection of the patients IV insertion site for signs of infection. Supportive interactions with peer families on videoconferencing were documented during discussions. Discussion topics included low moods, fatigue, infection worry, how to maintain independence, and need for support from others with their same lifelong IV experiences. The visual family interactions, discussions with professionals, and the iPad internet links were highly rated. Mobile distance care delivery can result in saved time and money for both healthcare professionals and families.

Identification of Depressive Signs in Patients and Their Family Members During iPad-based Audiovisual Sessions

Home parenteral nutrition requires a daily life-sustaining intravenous infusion over 12 hours. The daily intravenous infusion home care procedures are stringent, time-consuming tasks for patients and family caregivers who often experience depression. The purposes of this study were (1) to assess home parenteral nutrition patients and caregivers for depression and (2) to assess whether depressive signs can be seen during audiovisual discussion sessions using an Apple iPad Mini. In a clinical trial (N = 126), a subsample of 21 participants (16.7%) had depressive symptoms. Of those with depression, 13 participants were home parenteral nutrition patients and eight were family caregivers; ages ranged from 20 to 79 years (with 48.9 [standard deviation, 17.37] years); 76.2% were female. Individual assessments by the mental health nurse found factors related to depressive symptoms across all 21 participants. A different nurse observed participants for signs of depression when viewing the videotapes of the discussion sessions on audiovisual technology. Conclusions are that depression questionnaires, individual assessment, and observation using audiovisual technology can identify depressive symptoms. Considering the growing provision of healthcare at a distance, via technology, recommendations are to observe and assess for known signs and symptoms of depression during all audiovisual interactions.