'Making it better': self-perceived roles of family caregivers of older people living in care homes: a qualitative study

BACKGROUND: With growing numbers of frail older people making the move to a care home, family carers are increasingly finding themselves in the position of assisting with this transition and establishing a new caring role within this context. However, the nature of the family caregiving role within the care home setting is poorly understood. AIMS AND OBJECTIVES: This paper draws on data from a study, which sought to better understand the experience of nursing home placement from the viewpoint of relatives. The focus here is on the self-perceived contribution of family carers to life within the home. METHODS: A constructivist methodology was used. Data were collected in 37 semi-structured interviews involving 48 people who had assisted a close relative to move into a care home. FINDINGS: Data analysis revealed three phases to the transition from the relatives' perspective. This paper reports on the findings which relate to the final phase: 'making it better', which documents experiences of establishing a new caregiving role within the care home. Relatives described three main aspects to their role: maintaining continuity, which involves helping the older person to maintain their sense of identity through the continuation of loving family relationships and through helping staff to get to know the resident as an individual; keeping an eye, by monitoring the care received, providing feedback to staff and filling any gaps, and contributing to community through interacting with other residents, relatives and staff, taking part in social events and generally providing a link with the outside world. RELEVANCE TO CLINICAL PRACTICE: Findings suggest that the potential contribution of relatives to promoting the well-being of both residents and staff is under-developed. Staff in care homes should seek to identify the role that relatives would like to perform and support them to achieve this.     

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.     

Relationship between the levels of family burden in caring for older people with the incidence of mistreatment

Background

Caring for older people can be a burden for the family that led to mistreatment.

The duality in using information and communication technology in elder care

AIM: The aim of this paper is to report a study illuminating values and perceptions held by professional carers of older people about the use of information and communication technology applications. BACKGROUND: Various information and communication technology applications have successfully been developed to help solve a variety of problems in elder care. Beside different technical barriers and the assumed negative attitudes among older people, staff values and attitudes have been found to be an important cause of resistance to change and slowness in introduction of information and communication technology in health care of older people. METHODS: An interview study was conducted in 2004 with 10 healthcare personnel with 3-26 years experience of working in home care and nursing homes in Northern Sweden. Qualitative content analysis was used to identify recurring themes in the data. RESULTS: The interpretation of values and perceptions among carers revealed a duality where the carers perceived information and communication technology as a promoter of both inhumane and humane care, a duality that seemed to make them defensive and resistant to change. Within the overall duality, other dualities were embedded that described both perceptions about the care of older people and about being a carer. There was evidence of resistance among professional carers towards an introduction of information and communication technology applications in elder care. Carers considered that the same attributes of information and communication technology that could promote humane care could also lead to dehumanized care. CONCLUSION: There should be an ethical discussion when introducing information and communication technology applications in elder care. The best caring alternative for all those concerned should be considered. It should promote aspects of wellbeing and dignity for frail older people and fears of inhumane care among carers must be recognized and discussed.     

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.     

Nursing and information and communication technology (ICT): a discussion of trends and future directions

This paper traces the development of information and communication (ICT) within health care and the emergence of telehealth as a key component of modern health care delivery as health care moves from the ‘face to face age’ to the ‘information age’. The paper examines the interface of ICT and nursing practice and highlights the limited evidence relating to the nursing contribution within telehealth particularly beyond data input and output analysis for other health care personnel. Additionally, the absence of research relating to the impact of ICT upon nurses and their working lives is identified. The paper concludes that nurses need to engage more fully with ICT so that they contribute to shaping the care system and emerge as leaders of the new care systems delivering future clinical activity.     

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.     

Meeting the communication and information needs of chronic heart failure patients

There is a lack of evidence on how best to meet policy guidance in fulfilling the information needs of patients with chronic heart failure (CHF) and their families. We aimed to generate guidance for appropriate information provision to CHF patients and their families through a cross-sectional qualitative methodology with constant comparison of emergent themes. Participants were 20 CHF patients (New York Heart Association Functional Classification III, III–IV, and IV); 11 family carers; six palliative care staff; and six cardiology staff. Patients and carers severely lacked understanding of CHF and its symptoms. None had discussed disease progression or advanced care planning with staff. Although patients expected honest discussion of disease implications, data from clinicians described an unwillingness to disclose poor prognosis. We identified four types of barriers to the discussion of disease progression: disease-specific; patient-specific; specialism-specific; and staff time and resources. This is the first study to integrate cardiology, palliative care, and patient and family views to develop feasible recommendations on meeting information needs. Three recommendations for hospital-based clinical practice were generated from the data: (1) improved methods of providing information; (2) introduction of mutual education and joint working; and (3) development of care pathways and referral criteria.     

Multi-stakeholder perspectives on information communication technology training for older adults: implications for teaching and learning

Abstract

Objectives: The objective of this research was to identify and conceptualize barriers and strategies for effective implementation of information communication technology (ICT) training for older adults.

Methods: A grounded theory approach was used to collect and analyze qualitative data from 61 participants in three stakeholder groups: older-adult ICT trainees, care providers and ICT trainers.

Results: Care providers expressed older adults’ reluctance, lack of affinity, fears and socio-contextual attributes as barriers to overcome with ICT training. ICT trainers highlighted motivation, trainer–trainee relationship, patience, self-reliance and mutual value as strategic themes. ICT trainees elucidated occupational accomplishment, challenges and a sense of competence as themes from their experience with training.

Discussion: While digital literacy and skill building have traditionally been the key focus of ageing-centred ICT training, a deeper approach to address internal (personal) and external (socio-contextual) barriers, as conceptualized in the study finding, is vital in yielding successful outcomes.

• Implications for rehabilitation

• Information communication technology (ICT) is a vital resource for older adults to age-in-place and for health professionals in delivery of tele-rehabilitation.

• Family members and care providers realize the scope of ICT for ageing-in-place but raise doubts on the inherent motivation and abilities of older adults to adopt ICT.

• On the other hand, older adults who engage in one-on-one ICT training value their new-found sense of accomplishment and competence in using the Internet and social media.

• Graduate students who provided the training greatly appreciate their own learning experience, and stress the need for mutual trust, patience and simplicity in teaching ICT.

• A major precursor to imparting digital literacy and skills in older adults who lack ICT exposure is to help them overcome deep-seated attitudinal and socio-contextual barriers through a one-on-one approach.

     

Coping strategies and styles of family carers of persons with enduring mental illness: a mixed methods analysis

A qualitative exploratory study investigated the experiences and needs of family carers of persons with enduring mental illness in Ireland. The current mixed-methods secondary study used content analysis and statistical procedures to identify and explore the coping strategies emerging from the original interviews. The majority of family carers reported use of active behavioural coping strategies, sometimes combined with active cognitive or avoidance strategies. The percentage of cares reporting use of active cognitive strategies was the lowest among those whose ill relative lived in their home, and the highest among those whose relative lived independently. Participants with identified active cognitive strategies often reported that their relative was employed or in training. Participants who reported use of avoidance strategies were significantly younger than participants who did not report use of such strategies. The lowest percentage of avoidance strategies was among participants whose ill relative lived independently, whereas the highest was among carers whose relative lived in their home. The findings of this study highlight the importance of a contextual approach to studying coping styles and processes. Further research questions and methodological implications are discussed.