Views of family carers and older people of information technology

This article is the second in a series of four describing recent developments in Sweden aimed at promoting partnerships between older people, their families and formal service providers. The last article (Vol 11(11): 759-63) described the development of an information and communication technology (ICT) project ACTION -- Assisting Carers using Telematics Interventions to meet Older persons' Needs -- and focused on the use of CT to help family carers to be more prepared for their caregiving role. This article focuses on the concept of usability within the ACTION project and the importance of working closely with participants in order to create an information and communication service that is both acceptable and of direct benefit to family members in their everyday caring situations. Nielsen's (1993) Model of Usability is described within the overall context of the project and is used as a framework for the cycle of development and testing that underpin ACTION. A variety of research methods are highlighted, with a central theme being that of user involvement, with particular reference to the USERfit approach (Poulson et al, 1996). The education and training of older people and their family carers to use the ACTION technology is outlined and examples are given of the empowering effects of the use of the service and its user-driven focus. Recommendations for the further technical development of ACTION are firmly based on the comments and suggestions provided by older people and the family carers themselves.     

Supporting family carers through the use of information and communication technology--the EU project ACTION

Assisting Carers Using Telematics Interventions to meet Older persons' Needs (ACTION) is an EU project designed to improve the quality of life of frail older and disabled people and their family carers by the use of information and communication technology. It involved Sweden, England, Northern Ireland, the Republic of Ireland and Portugal. This article provides an overview of the research and development process of the ACTION system and services. The focus is upon the evaluation results with regard to the quality of life of older people and their family carers, the usability of ACTION and cost considerations. Recommendations are made regarding user-focused technology such as ACTION.     

Respite care for frail older people and their family carers: concept analysis and user focus group findings of a pan-European nursing research project

This paper provides a concept analysis of respite care for frail older people and their family carers. The authors re-examine the broader conceptualization of respite care delineated by Nolan & Grant, namely, users' needs for information, education and support about respite care, based on a review of recent literature and on a user focus group study. This work was undertaken by the Sheffield arm of the ACTION Project research team. ACTION is a 36-month project (1997-1999), involving Northern Ireland, The Republic of Ireland, Portugal, Sweden and England and is the largest nurse-led project to have received funding from the European Union TIDE sector (DGXIII Telematics Applications Programme, Disabled and Elderly). The authors discuss the key elements of respite and, more specifically, how they can be successfully used so that the potential of respite may be realized fully by family carers. Recommendations within the context of the ACTION research project are put forward to enable family carers and the persons they care for to make informed choices about respite care.     

Supporting family carers using interative multimedia

ACTION (Assisting Carers using Telematic Interventions to meet Older persons' Needs) is a nursing led Pan-European project (1997-2000). Its primary aim is to maintain the autonomy, independence and quality of life of frail older and disabled persons and their family carers by the application of telematic technology. This article describes the development of two multimedia programmes created as part of the ACTION project. Programme 1 'Planning ahead' helps family carers and frail older people to think about and plan for the future. Programme 2 'Break from caring' assists carers and older people to explore the range of respite care options available. Both programmes have been developed using a multimethod, user-centred approach. Preliminary evaluation data have indicated that frail older people and their carers have used the programmes to assist them when making difficult decisions such as selecting a nursing home, or exploring the use of respite care facilities.     

'I wanted to learn how to heal my heart': family carer experiences of receiving an emotional support service in the Well Ways programme

Family carers of people with mental illness provide an immense contribution to society in caring for mental health consumers. However, carers can experience substantial burdens and poor health outcomes themselves. Recognition of their needs for education and support has led to the development of a range of family education programmes. Throughout Australia, the Mental Illness Fellowship Australia offers the Well Ways programme, a group-based, family-to-family, education programme that provides information and aims to increase carers' capacity to care effectively for themselves, their families, and the mental health consumers. This paper describes a qualitative evaluation of an emotional support service piloted in a Well Ways programme in rural Queensland, Australia. The pilot service comprised individual emotional support offered to family carers attending the weekly Well Ways group education programme. Six of eight family carers who received the emotional support engaged in semistructured interviews exploring their experience of receiving the support. Three themes emerged from their experience: dealing with difficult times, connecting through shared experience, and exploring different options. Family carers found the emotional support beneficial, and reported that it enhanced their capacity to manage their own well-being, as well as their caregiving roles.     

Palliative care in patients with chronic obstructive pulmonary disease

This article considers the place of palliative and end of life care in the management of people with end-stage chronic obstructive pulmonary disease (COPD). This respiratory disease has considerable morbidity and mortality, which affect patients, their families and carers, and healthcare provision. Many nurses working with older people will encounter patients with advancing COPD which may be their main problem or part of multiple comorbidities. This article aims to help nurses recognise declining respiratory status and understand the challenges faced by this particular group of patients, their families and carers. It follows recommendations that end of life care should be considered and dealt with in this group of patients (Department of Health 2008, National Clinical Guideline Centre 2010). It explores palliation and end of life and then considers more practical applications to support nursing care at the end stage of the disease.     

Informal carers of older family members: how they manage and what support they receive from respite care

Aims. To describe informal carers’ coping strategies and their experiences of the support provided by respite care. Background. The target set in the Finnish national old age policy strategy is that 90% of the population over 75 should be able to live at home. A major source of support for older people and their families is respite care in an institution. Design. Survey. Methods. The data were collected among informal carers who regularly use respite care services (n = 143). Two structured questionnaires were used: the Carers’ Assessment of Managing Index ( Nolan et al. 1995 ) and an index developed by the researchers. Results. Informal carers who provided care for younger individuals or people who needed less help had a better quality of life. Spouse carers and older informal carers were less satisfied with their quality of life than younger carers. Periods of respite care had a major influence on informal carers’ quality of life: 93% said they felt invigorated. Care periods remained rather isolated episodes in the lives of the older patients in that there was hardly any discussion at the institution about the family’s situation, the objectives of respite care, or about how the informal carer was coping. Altogether, 47% of the nurses remained fairly distant. The most useful coping strategies involved creating alternative perspectives in the caring relationship. Conclusions. The results strengthen the knowledge base of informal caregiving by showing how caregivers cope and what kind of support they need in their demanding caring role. Relevance to clinical practice. Respite care nurses should invest greater effort in supporting informal carers. The service should be developed as an integral part of home care for older people. Nurses and informal carers should see each other as partners who share a common goal, i.e. the well‐being of the entire family.     

The experiences of working carers of older people regarding access to a web‐based family care support network offered by a municipality

Policy makers in Sweden and other European Member States pay increasing attention as to how best support working carers; carers juggling providing unpaid family care for older family members while performing paid work. Exploring perceived benefits and challenges with web‐based information and communication technologies as a means of supporting working carers' in their caregiving role, this paper draws on findings from a qualitative study. The study aimed to describe working carers' experiences of having access to the web‐based family care support network ‘A good place' (AGP) provided by the municipality to support those caring for an older family member. Content analysis of interviews with nine working carers revealed three themes: A support hub, connections to peers, personnel and knowledge; Experiencing ICT support as relevant in changing life circumstances; and Upholding one's personal firewall. Findings indicate that the web‐based family care support network AGP is an accessible, complementary means of support. Utilising support while balancing caregiving, work obligations and responsibilities was made easier with access to AGP; enabling working carers to access information, psychosocial support and learning opportunities. In particular, it provided channels for carers to share experiences with others, to be informed, and to gain insights into medical and care issues. This reinforced working carers' sense of competence, helping them meet caregiving demands and see positive aspects in their situation. Carers' low levels of digital skills and anxieties about using computer‐based support were barriers to utilising web‐based support and could lead to deprioritising of this support. However, to help carers overcome these barriers and to better match web‐based support to working carers' preferences and situations, web‐based support must be introduced in a timely manner and must more accurately meet each working carer's unique caregiving needs.     

Older Unpaid Carers’ Experiences Supporting Adults with Cerebral Palsy and Complex Communication Needs in Hospital

Older unpaid carers provide vital support to their adult sons or daughters with cerebral palsy who have complex communication needs during hospital stays. To date, there is little research into their experiences or the impact of providing such care on the carer and other family members. Knowledge of the experiences of the older unpaid carer is needed to inform development of a) strategies for supporting older carers of adults with disability who are unable to speak in hospital, and b) other alternatives for provision of support to these adults during periods of hospitalization. Such information could be used in training health care providers to adequately care for the adult with cerebral palsy and complex communication needs when the older carer is no longer able to provide support. This review will summarize the literature relating to older unpaid carers of adults with cerebral palsy and complex communication needs in hospital, and identify directions for future research and development in the field of supporting older carers of adults with complex communication needs.

User-friendly technology to help family carers cope

BACKGROUND: Increases in the older adult population are occurring simultaneously with a growth in new technology. Modern technology presents an opportunity to enhance the quality of life and independence of older people and their family carers through communication and access to health care information. AIM: To evaluate the usability of a multimedia software application designed to provide family carers of the elderly or disabled with information, advice and psychological support to increase their coping capacity. INTERVENTION: The interactive application consisted of an information-based package that provided carers with advice on the promotion of psychological health, including relaxation and other coping strategies. The software application also included a carer self-assessment instrument, designed to provide both family and professional carers with information to assess how family carers were coping with their care-giving role. DESIGN: Usability evaluation was carried out in two stages. In the first stage (verification), user trials and an evaluation questionnaire were used to refine and develop the content and usability of the multimedia software application. In the second (demonstration), stage evaluation questionnaires were used to appraise the usability of the modified software application. FINDINGS: The findings evidenced that the majority of users found the software to be usable and informative. Some areas were highlighted for improvement in the navigation of the software. CONCLUSIONS: The authors conclude that with further refinement, the software application has the potential to offer information and support to those who are caring for the elderly and disabled at home.     

Respite care innovations for carers of people with dementia

The importance of family carers to making a reality of community care policy is now widely recognized. The central role of carers was recently confirmed by the launch of 'The Carers' National Strategy' (Department of Health (DoH), 1999). In his foreword to this document, the Prime Minister, Tony Blair, acknowledged carers as the 'unsung' heros of British life' and pledged to raise the level and quality of the support that carers receive. Although the primary responsibility for meeting carers' needs still rests with local authorities the strategy charges everyone involved in the caring services with paying greater attention to supporting family members. In allocating monies to move the strategy forward the Government identified the provision of short breaks as one of the major priorities. This article describes the development of an innovative service for people with dementia and their carers in Sheffield. The service evolved following a research study on the views of carers and of people with dementia which identified the need for the provision of short breaks which were flexible, responsive and person-centred.     

A review of the information and support needs of family carers of patients with chronic obstructive pulmonary disease

Aims and objectives. The objectives of this narrative review were to identify: (1) The information and support needs of carers of family members with chronic obstructive pulmonary disease; (2) appropriate interventions to support carers in their caregiving role; (3) information on carers’ needs as reported in studies of patients living with COPD in the community. Background. Chronic obstructive pulmonary disease is a major health problem in the UK resulting in significant burden for patients, families and the health service. Current National Health Service policies emphasise, where medically appropriate, early discharge for acute exacerbations, hospital‐at‐home care and other models of community care to prevent or reduce re‐hospitalisations of people with chronic conditions. Understanding carers’ needs is important if health care professionals are to support carers in their caregiving role. Design. A narrative literature review. Methods. Thirty five papers were reviewed after searching electronic databases. Results. Few studies were identified which addressed, even peripherally, carers’ needs for information and support, and no studies were found which described and evaluated interventions designed to enhance caregiving capacity. Several studies of hospital‐at‐home/early discharge, self care and home management programmes were identified which included some information on patients’ living arrangements or marital status. However, there was little or no detail reported on the needs of, and in many cases, even the presence of a family carer. Conclusions. This review highlights the dearth of information on the needs of carers of chronic obstructive pulmonary disease patients and the need for future research. Relevance to clinical practice. There is little research based knowledge of the needs of carers of chronic obstructive pulmonary disease patients and interventions to assist them in providing care. This knowledge is critical to ensure that carers receive the information they need to carry out this role while maintaining their own physical and emotional health.     

Nurses’ experiences and expectations of family and carers of older patients in the emergency department

BackgroundOlder people are often accompanied by family/carers to the emergency department (ED). Few studies investigate nurses’ experiences of interacting with these family/carers.AimThis study was an exploration of the experiences and expectations that ED nurses have of family and carers accompanying the older adult patient.MethodFocus group interviews (four, n = 27) were conducted and interviews were audio-taped, transcribed and then thematically analysed.ResultsThree themes emerged relating to the way nurses judged family/carers of the older person, with the main theme the importance of time. Family/carers were evaluated as supportive and helpful when they saved nurses time and demanding and obstructive when they cost nurses time. A second theme was the family/carer as a knowledge resource. Nurses evaluated family/carers according to whether they could provide timely and useful information on the older patient. The third theme centred on nurses’ evaluations of family/carers getting in the way of assessing or treating the patient, by their physical presence and demands and by limiting open communication with the patient.ConclusionEmergency nurses have clear expectations of older patients’ families and/or carers. Future research must determine how nursing roles can sustain positive interactions with older patients’ families and/or carers in the ED.     

Assisting carers using the ACTION model for working with family carers

This article is the first in a series of four that describes recent developments in Sweden aimed at promoting partnerships between older people, their families and formal service providers. The focus in this article is on the use of information and communication technology (ICT) to help family carers to be more prepared for their caregiving role. It is based upon the PREP (preparedness, enrichment and predictability) model of nursing intervention (Archbold et al, 1995) which is applied in the context of a major ICT project called ACTION (Assisting Carers using Telematics Interventions to meet Older persons' Needs). The way in which ACTION has developed is briefly considered and the range of interventions used is described. Subsequent articles in the series reflect upon users' perceptions of the acceptability of the ACTION approach and a case study of the benefits of ACTION is also presented. Finally, the series concludes with an article which outlines the development of a call centre which is used to complement and augment the ACTION service.     

Avoidance of issues in family caregiving

Effective communication between older people and their family carers is necessary for providing appropriate and quality care. However, family carers and carereceivers may avoid discussing issues of concern and this may adversely affect the quality of the caring relationship. This study investigated the content of, and avoidance of issues in communication between 84 spousal and filial carers and carereceivers. The study findings indicate that family carers and carereceivers do avoid discussing issues of concern. Nurses working with families are well placed to promote more effective communication in the caring context to augment more satisfying caring relationships for both carers and carereceivers.     

Exploring the emotional support needs and coping strategies of family carers

This paper explores the emotional support needs and coping strategies of family carers derived from two focus group interviews, each group comprising seven family carers. The interviews were carried out in Northern Ireland as part of phase one of the ACTION (Assisting Carers using Telematics Interventions to meet Older persons Needs) project. The purpose of the interviews was to investigate family carers' needs and experiences, but this paper focuses specifically on the emotional support needs and coping strategies identified by group members. The issues discussed included information and social support needs, the emotional impact of caring, and coping with and adaptation to the caring role. The findings reveal that for the majority of family carers their experience was one of constant searching for support and information. The anxiety and frustration associated with inconsistent and irregular support and lack of information was a major source of concern for the carers in the study. However, the carers employed a number of positive and negative coping strategies to deal with the stress associated with their caregiving role. The study concluded with the recommendation for nurses and other health care professionals to become more proactive in assessing and meeting carers' emotional support needs.     

Improving care of older people through intermediate services

The aim of intermediate care, according to the National Service Framework for Older People, is to provide integrated services to promote faster recovery from illness, prevent unnecessary acute hospital admissions, support timely discharge, and maximise independent living. In Hackney, east London, this has resulted in two innovative approaches to meeting the NSF target. Homerton University Hospital NHS Foundation Trust has developed one post that addresses the needs of informal carers, and another that ensures older people who need help with their finances are able to access expert advice and support.     

Family carers for older relatives: sources of satisfaction and related factors in Finland

This study focuses on sources of satisfaction among family carers for older relatives and related factors in Finland. It is part of a major international project concerned with the coping of family carers in four countries. The results reported here are based on questionnaire data collected among 290 family carers from three Finnish towns. The questionnaire included the Carer's Assessment of Satisfaction Index (CASI) developed by Nolan and Grant (1992). The data were processed using SPSS statistical software. The results suggest that carers derived most satisfaction from seeing they could help their relative feel more comfortable, making them feel needed and wanted. Among factors relating to interpersonal dynamics, carers felt that this is one way in which they can show their love for the person they cared for. The family carer's as well as the dependent person's gender, the family carer's age, care burden and general life satisfaction were associated with sources of satisfaction. The results are compared with earlier findings on family carers' sources of satisfaction in Sweden and the UK. Implications for policy and practice are considered.