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.     

Information needs of women during early treatment for breast cancer

This study assessed the information needs of 70 women with breast cancer being treated by surgery, chemotherapy or radiation therapy. Information needs were measured by the breast cancer version of the Toronto Informational Needs Questionnaire (TINQ-BC). All women had high information needs, irrespective of type of treatment received. They mainly wanted information about their disease, treatments and investigative tests. An examination of individual items on the TINQ-BC revealed that all women wanted information about recurrence, specifically they wanted to know if the cancer would come back and how to tell if it had recurred. The results provide nurses with some direction as to what information to give women receiving early treatment for breast cancer.     

A qualitative analysis of the information needs of informal carers of terminally ill cancer patients

This article discusses issues relating to information arising from a qualitative study of the experiences of informal carers of terminally ill cancer patients. Qualitative data analysis, drawing on methods of literary criticism, revealed that information was a key area in carers' experience. The findings are presented in the context of needing to provide individualized care to every family and deal with information needs relating to the illness and prognosis. The question of who is in possession of what information is raised, and the effect that this can have on couples is discussed, together with the issue of false information which carers may receive. The discussion centres on the complexity of understanding carers' information needs and considers how these are affected by the context within which carers operate. The work of Glaser and Strauss on awareness contexts is discussed in this respect. Finally, the importance of the nurse's role as a sensitive mediator of information is considered.     

Lymphedema in women treated for breast cancer

OBJECTIVES: To review the clinical and evidence-based knowledge of lymphedema in women treated for breast cancer, including the anatomy, physiology, pathophysiology, diagnosis, management, and nursing role. DATA SOURCES: Research studies, review articles, clinical literature, American Cancer Society lymphedema work group proceedings. CONCLUSIONS: Arm lymphedema can be a consequence of treatment for breast cancer and may affect all aspects of quality of life at any time during recovery and long-term survivorship. Prevention and early treatment are vital. IMPLICATIONS FOR NURSING PRACTICE: As patient advocates, nurses can document patient complaints, conduct arm assessments, and reinforce arm precautions at every clinical visit. Knowledge of research and treatment advances is crucial to enhancing the quality of life of women treated for breast cancer.     

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.     

Information needs and sources of information for women with breast cancer: a follow-up study

This paper reports a study which examined the specific information needs and sources of information for 105 women with breast cancer at two time points, the time of diagnosis and a mean of 21 months from diagnosis At diagnosis the priority information needs concerned survival issues Further from diagnosis survival issues were still a concern, but information about the risk to family members of getting breast cancer showed a significant increase in importance Information about sexual attractiveness was ranked last at both the newly diagnosed and follow-up stages Information sources at the time of diagnosis centred around the specialist breast care service, while further from diagnosis few professional or voluntary sector sources were utilized, with women receiving most of their information from media sources such as women's magazines The relevance of these findings for nurses and other health care professionals is discussed     

Meeting the needs of younger women with breast cancer

In 1999 over 40,000 women were diagnosed with breast cancer, just over 8,000 of whom were under the age of 50 (Cancer Research UK, 2003). Premenopausal women who have been diagnosed with breast cancer often feel isolated and this article looks at some of the specific medical and psychosocial issues they may experience. Before examining these issues in depth, the article provides a brief overview of breast cancer and concludes by looking at the support and information services available to meet the needs of these women.     

Service needs of stroke survivors and their informal carers: a pilot study

This pilot study prepares the way for a controlled evaluation of counselling of disabled stroke survivors and their carers. It assesses feasibility of methods and outcome measures potentially useful in the main study. The study elicited information about the psychological, physical, social and service needs, and the feelings of stroke survivors and their informal carers. Twenty patients and their carers were interviewed separately in their own homes. Results describe research tools which were refined, and demonstrate several unmet needs in the psychosocial domain. The main findings were a requirement for more information about stroke and for counselling in relation to 'care' problems arising out of the disability of stroke disease and the changes in dependency produced.     

Evaluating the self-assessed support needs of women with breast cancer

Evaluating the self‐assessed support needs of women with breast cancer Aims of the study. The first aim of the study was to identify the self‐assessed support needs of women with breast cancer at various points of illness and, secondly, to establish if these needs formed clusters which could provide the basis for developing a standardized scale of needs for use by breast care teams in the evaluation of care. Background. It has been found that support given to women with breast cancer has a positive effect upon their reactions to the illness and may even prolong their survival. Given that breast cancer affects a large number of women it is obviously important that those affected receive, in addition to the best available medical treatment, the type of support that best meets their needs. This study aimed to provide information on the impact of breast cancer and the need for various types of support by examining women’s own assessment of their needs at different stages of their illness. Design and methods. A purposive sample of 12 women with a diagnosis of breast cancer was selected in one health authority in England, United Kingdom (UK). Women selected represented a wide age range (between 26 and 58), were married or in long‐term cohabiting relationships and were at different points on the illness trajectory. Women were invited to take part in a semi‐structured interview about their experiences of breast cancer. The data from these interviews were analysed using the software package Qualitative Solutions and Research, Nonnumerical Data Indexing, Searching and Theorizing (QSR*NUDIST). Following this content analysis, a questionnaire was formulated which divided statements into seven categories: diagnosis, treatment, support, femininity and body image, family and friends, information and after care, to be rated on a Likert scale ranging from ‘of no importance’ to ‘extremely important’. Questionnaire data were analysed by means of a one‐way analysis of variance (for three independent variables) or t‐test for two independent variables. Results. The questionnaire was sent to 971 women and achieved a response rate of 50·4%. The mean score for statements of need reached the level of point 4 on the Likert scale (important) with three exceptions: having professional help with family problems and domestic upheaval, coping with feelings of anger and dealing with the question ‘why me?’ Conclusion. With the above three exceptions, women experienced a high level of need associated with a diagnosis of breast cancer. Studies of this kind should enable resources to be targeted to areas of highest need.     

Meeting the needs of young carers.

Up to 40,000 young people in the UK may be caring for a sick or elderly relative but they may not be getting the support they deserve for themselves. This article suggests that health professionals and teachers do not always recognise the problems that young carers face, so cannot support them. The author recommends further training for these professionals to increase their awareness of young carers' needs.     

The needs of informal carers: a proposed assessment tool for use by public health nurses

AIM: To develop an assessment tool for the collection of information on carers' needs and to pilot test same. BACKGROUND: No formal assessment of the needs of carers is undertaken by Public Health Nurses (PHNs) in the West of Ireland. METHOD: An assessment tool which took the form of a questionnaire was designed based on an earlier needs analysis, a literature review and qualitative data obtained with carers at two focus groups. Sixty carers were involved in the pilot study of the tool. FINDINGS: Carers found this model made them feel valued, created awareness about the effects of caring and provided them with information. They recommended its introduction. CONCLUSION: The carers and PHNs found the assessment tool to be useful and comprehensive in its approach. However, it requires modification, with specific attention being paid to the validity and reliability of the tool.     

Assessing palliative care needs: views of patients, informal carers and healthcare professionals

AIM: This paper reports a study to assess the palliative care needs of the adult population served by a healthcare provider organization in Northern Ireland from the perspectives of patients, informal carers and healthcare providers. BACKGROUND: Assessing palliative care need is a key factor for health service planning. Traditionally, palliative care has been associated with end-of-life care and cancer. More recently, the concept has been extended to include care for both cancer and non-cancer populations. Various approaches have been advocated for assessing need, including the exploration of professional provider and user perspectives of need. METHOD: Semi-structured qualitative interviews were undertaken with a purposive sample of patients and lay carers receiving palliative care services (n = 24). Focus groups were also conducted with multi-professional palliative care providers (n = 52 participants) and face to face interviews were undertaken with key managerial stakeholders in the area (n = 7). The focus groups and interviews concentrated on assessment of palliative care need. All the interviews were transcribed verbatim and analysed using Burnard's framework. FINDINGS: Professional providers experienced difficulty in defining the term palliative care. Difficulties in communication and information exchange, and fragmented co-ordination between services were identified. The main areas of need identified by all participants were social and psychological support; financial concerns; and the need for choice and information. All participants considered that there was inequity between palliative care service provision for patients with cancer and non-cancer diseases. CONCLUSION: All patients, regardless of diagnosis, should be able to access palliative care appropriate to their individual needs. For this to happen in practice, an integrated approach to palliative care is essential. The study methodology confirms the value of developing a comprehensive approach to assessing palliative care need.     

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 information needs of women newly diagnosed with breast cancer

Nurses can play a key role in patient education, including providing patients with useful and approrate information Rather than focusing on the process of education or information giving by nurses, this study places emphasis on the content of that information by taking the patients'perspective and asking the patients themselves what particular types of information are perceived as important at a specific point in time The aim of the study was to explore what particular types of information were important to women newly diagnosed with breast cancer, to enable nurses and other health care professionals to utilize their time as effectively as possible and provide a high-quality service to individuals in their care Women with breast cancer (a mean of 2 5 weeks from diagnosis) were interviewed and asked to compare items of information The items of information were presented m pairs and the women stated a preference for one item in that pan- Thirty-six pairs were presented in total The analysis involved the use of a Thurstone scaling model, which allowed rank ordermgs, or profiles of information needs, to be developed, reflecting the perceived importance of each item Information about the likelihood of cure, the spread of the disease and treatment options were perceived as the most important items of information at the tune of diagnosis Other information needs, in order of descending priority, included information about the risk to family, side-effects     

Healthcare and support needs of women with suspected breast cancer

AIM: This paper is a report of a study to investigate changes in the healthcare and support needs during the diagnostic period, and factors that affect these needs in women with suspected breast cancer. BACKGROUND: Although the needs of women with breast cancer are well recognized, few studies have examined the needs of women with suspected breast cancer during the diagnostic period. METHOD: This longitudinal study used an investigator-developed, self-administered questionnaire to collect data from 127 women in Taiwan on three occasions: notification of need for breast biopsy, before biopsy and after diagnosis. The data were collected from November 2004 to April 2005. FINDINGS: Participants had high need levels before and after diagnosis, with their top needs in the domains of healthcare services for diagnosis, follow-up and consultation, and information about the disease. They needed disease- and treatment-related information more than emotional support. Need levels were higher (P < 0.01) before diagnosis than after, highest before biopsy, and lowest after diagnosis. Furthermore, needs were higher (P < 0.01) before than after diagnosis for diagnostic services, disease information, and involvement of family and friends. Higher needs were found in married women with more education and no history of benign tumours. Need level did not differ statistically significantly by age, religious status, degree of social support, family history and breast symptoms. CONCLUSION: Need levels of women with suspected breast cancer vary during the diagnostic period, are highest before breast biopsy, and related to personal characteristics and cultural context. Therefore, during this period, nursing staff should provide patients and families with culturally sensitive, individualized, supportive care.