Partnership nursing: influences on involvement of informal carers

Factors influencing family involvement in the care of children in hospital were explored in a survey of 243 inpatients in two hospitals Eighty-five per cent of the children were receiving some or all of their care from a family member, usually the mother Significant influences on the amount and type of involvement included acuity, type of illness, length of stay and the language spoken by the family Other social factors, such as distance from the hospital, number of dependent siblings, social class and ethnicity were not significant influencing factors in this population The influence of language on involvement, and conclusions from related literature, suggest that characteristics of the interaction such as communication and nursing style are more significant than social structural factors A typology of nursing approaches to informal carers is proposed which could apply beyond the paediatric context Further work is needed to test the hypothesis that such approaches are characterized by nurses excluding the carer, or permitting, making assumptions about, or negotiating carer involvement     

The role of the primary care team in support of informal carers

Caring for an elderly, frail or disabled person has effects on physical and psychological health as well as financial and social consequences. There are 6 million informal carers in the UK and the primary care team together with other community services is expected to provide the support they need. However, most primary care team members feel ill equipped to do so and there is very little evidence about which interventions are effective. This article reviews the reasons for this problem and suggests a strategy primary care team members could adopt until new evidence about effective strategies is available.     

Addressing the needs of informal carers: a neglected area of nursing practice

The British government's philosophy of maintaining dependency groups in the community, coupled with the rising numbers of frail elderly and dwindling pool of informal carers, has highlighted the need for appropriate professional interventions in this area. However, a failure to adequately conceptualize the needs of carers has, in the past, resulted in interventions often being inappropriate, irrelevant or unavailable. This paper advocates a major role for the nursing profession in redressing this balance. Using the findings of a postal survey on the problems and satisfactions of caring, the authors suggest how nurses might modify their current practice to maximize their contribution to this important but neglected area of their work.     

Evaluating the needs of informal carers

Abstract

Sore mouth is a common symptom in cancer patients which impacts negatively on their quality of life. This audit was performed on consecutive admissions to an in-patient palliative care unit in Perth, Western Australia to assess the incidence of mouth soreness and the associated microbiological culture and polymerase chain reaction (PCR) results. Of patients, 24% (20/83) recorded a sore mouth. The most common organism isolated was Candida spp. (n = 8), followed by herpes simplex virus type I (HSV; n = 5), Staphylococcus aureus (n = 2) and Klebsiella pneumoniae (n = 1). Only one of the five patients with HSV had the classic 'cold sore' lesion with crusting and ulceration on the lip. The others had non-specific findings such as erythema (n = 3), coated tongue (n = 2) or dry mouth (n = 3). The results highlight a greater incidence of HSV than previously reported and suggest further work to be performed on the aetiology and treatment of sore mouth in hospice patients.     

Community provision for informal live-in carers of stroke patients

Stroke is common and disabling. Most stroke patients are cared for at home by informal carers. This study of informal carers of stroke patients measured service provision and satisfaction with different aspects of community care received by these carers. Dissatisfaction was expressed with training and information provision for carers, communication between carers and community services, speed of response and coordination of community services, and perceived support. Problems of information provision were most marked for those patients with most disability and/or older carers.     

Information needs of the informal carers of women treated for breast cancer.

Although the vital role of informal carers has been acknowledged in government policy documents in the UK, the information needs of informal carers are not well documented. There is also uncertainty about where carers get their information from and whether they are satisfied with the information they receive. This study aimed to examine the information needs and sources of information for informal carers in the acute cancer setting; the informal carers of a sample of women treated for breast cancer. Both quantitative and qualitative data were collected from semi-structured interviews with 50 informal carers. Measures of information needs and sources were administered in addition to an in-depth exploration of information needs. The priority information needs of carers related to cure, spread of disease and treatments, a similar profile to that found for women with breast cancer in previous work. The main source of information for carers was the person they were caring for, although written information was also valued. Health professionals need to ensure that patients are well informed so that patients can provide information for carers and also need to take advantage of any opportunities to directly assess the information needs of carers to enable them to be more effective in their caring role.     

The pressures felt by informal carers of people with dementia

Caring for people with dementia is complex and demanding, and informal carers carry out much of the care. In this article, Madeline Armstrong outlines the different types of dementia and discusses the psychological approaches to care. Informal carers experience many stressors when caring for people with dementia and Admiral nurses play an important role in supporting carers.     

Experiences and challenges of informal caregiving for Korean immigrants

Title.  Experiences and challenges of informal caregiving for Korean immigrants.
Aim.  This paper is a report of a study designed to explore the caregiving experiences of Korean Americans.
Background.  Increasing numbers of older people in the Asian population place important long-term care demands on Asian caregivers, yet minimal attention has been given to the issue of caregiving in this group. The current study attempts to fill the gap by describing Korean American caregivers' unique caregiving experiences from their perspectives.
Method.  A qualitative research design using a focus group approach was employed to discuss caregiving experiences in a cultural context. Data were collected over an 8-month period in 2005. Twenty-four informants, mostly women, at varying points surrounding caregiving participated in a focus group interview. Each focus group lasted about 1 ½–2 hours. Thematic analysis was conducted by two bilingual researchers.
Findings.  Three key themes were identified: the caregiver role – competing priorities and beliefs, the extent and impact of caregiving, and the need for education and culturally-tailored support systems. Ten subthemes were identified within the three major themes: (1) facing double challenges; (2) changing attitudes about filial piety ( Hyo ); (3) providing care; (4) feeling out of control; (5) going through changing family dynamics; (6) being connected vs. providing connection; (7) paying back; (8) learning by themselves; (9) recognizing differences and (10) reconsidering geriatric care systems.
Conclusion.  The caregiving experiences described by Korean American families point to the need to identify and develop more focused outreach programmes as well as more culturally appropriate support services for this rapidly increasing population.     

Meaning-making for family carers in nursing homes

Kellett UM. International Journal of Nursing Practice 1998; 4: 113–119 Meaning-making for family carers in nursing homes This ontological hermeneutic study highlights the importance of understanding the human experience of family caring. In contrast to much family caregiving research which focuses upon the home care situation, this study involved in-depth audiotaped conversational interviews and observations with 14 family carers who continue to care within a nursing home context. Thematic analysis of the transcribed interviews/field notes uncovered a number of common themes of meaning which highlight the nature of family caring experience in nursing homes. Discussion of such findings will challenge practitioners to reconceptualise the nurse–resident–family carer relationship, appreciate the many ways in which a family member’s involvement in care provides meaning and significance in their lives, and understand family carers through a process of human relating which fosters families’ meaningful involvement in caring within a nursing home context.     

Identifying the concerns of informal carers in palliative care.

The purpose of this preliminary study was to identify the perceived support needs of informal carers (families and friends) of cancer patients receiving palliative care in the community. Changes in policy mean that increasing numbers of palliative care patients receive the majority of their care at home. This potentially places heavy demands on families and friends. Thirty-nine informal carers were recruited from two areas in southern England. Data were obtained on psychological morbidity (General Health Questionnaire), and caregiving burden (Carer Strain Index), and a semistructured interview was used to elicit data on perceptions of caring. Results indicate that 33 (84%) reported above normal levels of psychological distress and 16 (41%) experienced high levels of strain related to caregiving. Younger age and being female were found to be correlated with psychological morbidity and strain. Participants also reported life restrictions, emotional distress and limited support.     

The recognition and support of carers

Many carers are isolated and GP surgeries are often their first point of contact for support and resources. This article describes the role of a carer support and development worker, whose aim is to provide the support carers need.     

Living and coping with Parkinson's disease: perceptions of informal carers

A review of the literature highlights the important role informal carers play in the provision of palliative care in the community. In order to explore the caring experience of relatives with Parkinson's Disease (PD), interviews were conducted with 26 informal family caregivers. Interviews were taped, transcribed and subjected to content analysis. All caregivers were spouses, the majority female (n?=?17) and all were responsible for providing physical, social and emotional care in the home. Although they viewed care giving as their role and duty, the results highlight the widespread burden of providing care on the emotional and physical health of the caregivers. The financial implications for providing care were outlined, with many reporting difficulty in accessing benefits. From the point of diagnosis, which had a huge emotional impact on relatives and carers, carers did not feel health professionals integrated them within the caring journey. Since diagnosis, carers commented on the lack of continued and coordinated care plans for relatives, resulting in symptoms being mismanaged and care opportunities for relatives and carers missed. Stereotypes of the meaning and timing of palliative care were common with many viewing it as being synonymous with cancer and not applicable to a person with PD. As the well-being of the informal carer directly influences the care of the person with PD, support interventions are required to relieve their burden, maximize outcomes and ensure targeting of services.     

A longitudinal study of home care clients and their informal carers

The objective of the longitudinal study was to monitor physical and cognitive changes in a population of 330 older people being supported at home by health services. The participants were 75 years and older and classified as having moderate-to-high needs. A total of 210 primary informal carers were recruited to determine their specific needs and how they coped as dependency levels of their care-recipients changed. Data were collected using six different tools. Two questionnaires were mailed out to participating carers. Assessments of care recipients were carried out at three sampling points over the study period. The clients showed a significant increase in physical dependency and an overall increase in cognitive impairment over time. Only 32% of carers lived with care recipients, and changes in dependency, cognitive changes, lack of respite and performing activities of daily living were all major stressors for informal carers. The needs of informal carers are reported and discussed in the context of recommendations of the Commission on the Future of Health Care in Canada.     

Setting up a support group for carers of stroke survivors

A stroke specialist nurse enlisted the help of women carers to develop a self-supporting carers' group in Northern Ireland. Members are offered information, advice and a forum for service improvement suggestions. Two founding members discuss their experiences of attending meetings.     

Palliative care: the experience of informal carers within the Bangladeshi community

Optimal palliative care cannot be realized unless nurses have a full understanding of what the patient's family is experiencing. There is a gap in nursing knowledge related to informal care and ethnic minorities. The aim of this retrospective qualitative exploratory study was to investigate the experiences of Bangladeshi informal carers living in the UK, associated with caring for a dying relative. Semi-structured interviews using an interpreter were carried out and patient notes were examined. Four categories emerged from the data: caring, support, communication, and home and family. In addition to the demands and stresses caused by their relative's symptoms and the knowledge that they were dying, the Bangladeshi carers experienced communication barriers, isolation and anxieties regarding visas and housing--yet all were uncomplaining about their situation. Palliative care nurses working with Bangladeshi families need to be aware of the additional stresses that these families may experience and be able to offer strategies to enable them to cope with them.