Information systems and healthcare XXVIII : the information needs of family carers in collaborative healthcare

While the important role of family carers has been increasingly recognized in healthcare service provision, particularly for patients with acute or chronic illnesses, the family carer's information needs have not been well understood or adequately supported by health information systems. In this study, we explore the information needs of a family carer by analyzing the extensive online diary of a Vietnamese family carer supporting his wife, who was a lung cancer patient. The study provides a deep understanding of the information needs of the family carer and suggests a four-stage information journey model including identification, searching, interpretation and information sharing, and collaboration. A number of themes emerge from the study including the key role of the carer, information filtering by the carer, information sharing and collaboration, and the influence of Vietnamese culture. The paper concludes with a discussion of the requirements for health information systems that meet the needs of family carers.

Identifying the health and mental health information needs of people with coronary heart disease, with and without depression

Objective:
To identify the health and mental health information needs of people with coronary heart disease (CHD), with and without comorbid depression.

Design and setting:
A qualitative study conducted in Melbourne in 2006, using thematic analysis of semi-structured interviews on the types of health information that patients with CHD considered useful to assist with the management of their illness. Structured clinical interviews were used to assess current and prior depressive episodes in these patients.

Participants:
14 general practice patients (eight with current or prior history of major depression) who had experienced myocardial infarction, coronary artery bypass graft surgery, angioplasty or angina (confirmed via testing).

Results:
Four themes relating to information on how patients could manage their cardiovascular health and improve their psychosocial wellbeing emerged: psychosocial; physical activity; medical; and information for family. The most prominent information needs included identification and management of risk-related physical symptoms, and psychosocial information, most notably to enhance patients’ social support. Patients considered this information important for alleviating health anxiety and negative affect.

Conclusion:
This small patient sample endorsed the need for health and mental health information on a range of psychosocial and physical health topics. Participants desired specific types of information to assist with the self-management of their health and to assuage their health concerns.

Addressing online information needs in palliative care : an action research-inspired approach

Whereas user participation has been embraced worldwide as a means to provide better patient outcomes, the implementation of formative, action research approaches in online health information has remained under-explored. The purpose of this study is to present an action research-based methodology that allows the scoping of health information and design needs in complex, multi-user online environments. The project's four main stages were informed by an iterative, formative approach involving continuous expert and user evaluation. The study suggests that an action research-inspired formative approach can be successfully employed to generate user-participation. Moreover, sustained user-participation effectively addresses most quality issues regarding content, language, and accessibility raised in the recent literature. The paper concludes that an action research approach geared to develop online health resources deserves more attention.

The education and information needs of young adults with type 2 diabetes : a qualitative study

Aims and objectives. To identify the preferred content and delivery mode of education information for people aged 25 to 45 with type 2 diabetes to enable them to effectively self-manage their diabetes.

Background. People with type 2 diabetes are required to manage their own health and initiate behavioural changes. Self-management education and resources have typically been targeted at people aged 50 years and older. Little is known about the concerns and needs of younger people in managing type 2 diabetes, which are likely to be different from those of older people.

Design. A qualitative design was considered the most appropriate to elicit participants' views and perceptions of their type 2 diabetes information needs.

Methods. Data were obtained from one focus group (n = 9) and telephone interviews (n = 4) with people aged 25 to 45 with type 2 diabetes conducted in 2008.

Results. Implicit in participants' responses was their need to be active partners in managing their diabetes. Participants wanted information that is easy to understand, brief, consistent, age-specific and about a number of topics that are not adequately covered at present. They wanted a centralised source of information and a range of delivery mode options. Participants expressed some ambivalence about the Internet as a source of information. Participants also wanted age-specific group sessions, support from peers, psychological support, increased understanding of type 2 diabetes in the community, and a focus on preventing diabetes.

Conclusions. Young people with type 2 diabetes have specific diabetes needs and preferred information delivery modes. Participants felt current diabetes education programs do not cater specifically to their age group. Education and information resources need to be developed for the target group, addressing their content and format preferences.

Relevance to clinical practice. Health professionals need to utilise appropriate delivery modes and include information relevant to younger people when providing education information to young adults with type 2 diabetes.

Information skills and the distance education student : an exploratory study into the approaches of Southern Cross University distance educators to the information needs of external students

This study unites the concepts of self-directed learning and information literacy in the external higher education environment. It asserts that many attempts by librarians at building better working relationships with distance educators have failed because the approaches of distance educators to the information needs of students are not adequately addressed. This exploratory and qualitatively based study examines the approaches of ten distance educators at Southern Cross University (SCU) to the information needs of their external students. It then makes recommendations based on these interviews which aim to improve relationships and co-operation between libraries and distance educators and to promote self-directed learning approaches by external students.

Supporting information needs of senior citizens in community aged care

To address the challenge of an ageing population in an information society, it is important to introduce information systems to assist the aged people in maintaining and improving their quality of life. An understanding of what information aged people need, how they seek and use information, and how they adopt Information and Communication Technology (ICT) is required. This paper reports the findings of an empirical study undertaken in Australia to understand the information needs of senior citizens who reside in the community. The study aims to understand how ICT can support the independent living of senior people in the community from both the social and health perspectives. We offer a new understanding of the information needs of aged people in the community and extend the information systems research in aged care. This research also contributes to the development of innovative ICT enabled aged care service solutions in community aged care.

Information needs in community aged care

This paper focuses on the information needs and behaviours of senior citizens and their carers in the community. Two case studies concerning elderly stroke patients and their carers are described and discussed. Analysis of the case study data reveals a number of themes including the actual information needs and information behaviours of the senior citizens, the importance of proxy information seekers and advocates and the need for usable, accessible and useful tool to support the needs of care recipients. A preliminary framework is developed that highlights important aspects of supporting the information needs of care recipients and carers in community aged care. Finally we suggest opportunities for technology interventions that address various information needs of senior citizens in the community.

Information needs and the implications for monitoring health systems : the Australian experience

This paper outlines the information needs underlying the health information system in Australia and the implications these have for the ability to monitor the performance of the health system. We discuss the use of indicators in performance monitoring and the role of information frameworks in providing a basis for their development. The major Australian data sources to support the development of performance indicators are outlined, and their current and likely futures uses for performance monitoring discussed.

Information needs of young adults with type 2 diabetes : a literature review

Background Type 2 diabetes (T2DM) is increasingly prevalent in young adults but there is very little information about what information they need to undertake diabetes self-management.

Aim To undertake a structured literature review to identify what information people with type 2 diabetes aged 25 to 45 years need to manage their diabetes and how they would like to receive it.

Methods A structured literature search was conducted. The MEDLINE, CINAHL, AMI, APAIS-Health databases were searched for articles published between 1980 and 2011. The reference list of journals and relevant websites were searched. Inclusion criteria were: literature about T2DM in young adults and literature about education and information needs of young adults with T2DM.

Results Only one article specifically focussed on the information needs of young people with T2DM and two reports included some information about T2DM and young adults. The limited data available suggested young adults with T2DM have specific information needs that are not sufficiently addressed in current resources, and have some needs different from young people with type 1 diabetes. Young people with T2DM want clear, consistent information from credible sources, delivered in a range of formats. They also want psychological support and counselling, age-specific education groups, after hours access to health professionals and education provided to family members and the community about T2DM in young people and about how to support people with T2DM.

Conclusion With the prevalence of T2DM in young adults continuing to increase, the need to address the specific information needs and learning styles of people with T2DM aged 25 to 45 is increasingly important.

Information needs of family carers of people with diabetes at the end of life: a literature review

Background:
Recent research identified the issue that family carers of people with diabetes at the end of life (EOL) did not receive sufficient information to enable them to help their relative manage their diabetes at the EOL.

Aim:
The aim of the current study was to undertake a literature review to identify the information needs of family carers of people with diabetes at the EOL.

Method:
A comprehensive review of the literature was conducted by searching the following databases: CINAHL, PubMed, PsychInfo, Scopus, and SocINDEX. The grey literature was also searched for papers relevant to the aim. All study designs were included. A content analysis of relevant papers was undertaken to identify themes.

Results:
Sixteen of the more than 300 papers identified addressed the information needs of family carers of people with diabetes at the EOL and were included in the review. Five key themes were identified from the papers reviewed: (1) performing diabetes care tasks, (2) focus of care, (3) blood glucose management, (4) EOL stages, and (5) involving patients and family carers in decisions about diabetes care. Most of the 16 papers represented the views of health professionals and focused on the need to provide information about the medical aspects of diabetes management.

Conclusions:The review suggests further research is needed to identify the information needs of family carers of people with diabetes at the EOL to enable interventions to be developed to support the family carers and meet their unique information needs.

The information needs of older people who choose supportive care over dialysis: A case study approach

Background: Supportive care is increasingly being viewed as an appropriate alternative option to dialysis or transplantation for older people with advanced chronic kidney disease (ACKD). The purpose of this study was to explore the information needs of older people with ACKD who choose supportive care as their treatment. Methods: A case study approach using semi-structured interviews and medical case note review methods was used to explore the information needs of six older people receiving supportive care. Results: The majority of the information the participants had recalled receiving placed a greater emphasis on dialysis over supportive care. Although they did not want dialysis, they were not clear on what supportive care meant or whether they had a supportive care plan. Participants perceived they had never been given specific information about supportive care. Medical case note review revealed infrequent and non-systematic documentation in medical case notes. Conclusions: In the absence of a formal nephrology supportive care program, information may be provided in an unplanned, non-systematic approach to older people and their families who choose supportive care.

Information provision and information needs in adult survivors of childhood cancer

BACKGROUND Knowledge about their past medical history is central for childhood cancer survivors to ensure informed decisions in their health management. Knowledge about information provision and information needs in this population is still scarce. We thus aimed to assess: (1) the information survivors reported to have received on disease, treatment, follow-up, and late effects; (2) their information needs in these four domains and the format in which they would like it provided; (3) the association with psychological distress and quality of life (QoL). PROCEDURE As part of the Follow-up survey of the Swiss Childhood Cancer Survivor Study, we sent a questionnaire to all survivors (≥18 years) who previously participated to the baseline survey, were diagnosed with cancer after 1990 at an age of <16 years. RESULTS Most survivors had received oral information only (on illness: oral: 82%, written: 38%, treatment: oral: 79%, written: 36%; follow-up: oral: 77%, written: 23%; late effects: oral: 68%, written: 14%). Most survivors who had not previously received any information rated it as important, especially information on late effects (71%). A large proportion of survivors reported current information needs and would like to receive personalized information especially on late effects (44%). Survivors with higher information needs reported higher psychological distress and lower QoL. CONCLUSIONS Survivors want to be more informed especially on possible late effects, and want to receive personalized information. Improving information provision, both qualitatively and quantitatively, will allow survivors to have better control of their health and to become better decision makers. Pediatr Blood Cancer 2014;61:312-318. © 2013 Wiley Periodicals, Inc.