Social support and the chronically ill individual

Nurses caring for the chronically ill need to be alert for the problems of social isolation and social impairment. Families often respond initially to serious illness by becoming over-protective and fostering dependence and a sense of impaired competence in the ill person. As the illness continues, families often experience exhaustion because of the demands of new roles, depleted finances, and other aspects of a changed lifestyle. Feelings of anger, guilt, and helplessness occur in the network, often leading to withdrawal of support--especially as the ill person's ability to reciprocate support is impaired. Nursing interventions in situations of social isolation focus on reducing isolation by promoting social interaction as appropriate, and by directly or indirectly mobilizing or expanding the social network. The problem of impaired social interaction may occur secondary to the personality changes that often accompany chronic illnesses, or as a function of the chronic illness or disability itself, as in the case of mental illnesses. Social impairment is an appropriate nursing diagnosis in abusive families. Nursing interventions range from educational programs for social skill development to reduction of the amount of contact within the network to involvement of protective and psychotherapy services. Chronic illness has profound effects on social support and the social network of both the ill person and his or her family. As both long-term illnesses and family involvement in care giving increase, nursing care in situations of chronic illness must include attention to issues of social support. Nursing diagnosis provides a framework for nurses to include social support in their care of the chronically ill patient. Social isolation and social impairment can be reduced by nursing interventions.     

Management of chronic illness: voices of rural women

BACKGROUND: The prevalence and cost of chronic illness globally and in the United States of America continue to escalate and the day-to-day management of these conditions presents a major challenge. The burden of chronic illness disproportionately affects vulnerable populations such as women and those living in rural areas. AIM: To add to the knowledge base of illness management by chronically ill rural women through examining their individual perceptions of the illness experience. METHOD: The Women to Women project provided a nursing research-based computer intervention model for conducting support groups, providing health education, and fostering self-care, via personal computers and evaluated its effect on the women's psychosocial health. FINDINGS: Fatigue and pain were the major physical symptoms that impacted the women's quality of life, with depression and stress being the primary emotions they experienced. The characteristics of humour, hope, and courage were key in their successful adaptation to living with chronic illness. CONCLUSIONS: The women's voices relate how they manage their illness responses and adaptation mechanisms. The data provide nurses with information to heighten their sensitivity to clients' day-to-day needs and experiences. It will assist them in their designing and planning of interventions that will enable clients to adapt and to have the best quality of life possible within the limitations of their chronic illnesses. The data are also important to nurses involved in rural research and theory development concerning self-management and adaptation to chronic illnesses.     

Care for chronically ill children and elderly in the People's Republic of China

This paper examines home care for urban chronically ill elderly and children in the People’s Republic of China. Seventy-five families with a chronically ill child living at home and 75 families with a chronically ill elderly person living at home responded to in-depth interview questions. These data provide insights into many dimensions of this home care situation including the severity of the illness and problems experienced by family caregivers. Study results show the difficulties of home health-care and provide a basis for nursing’s role in China’s future home care.     

Self-care and the chronically ill patient

The care of patients coping with chronic illness is a major priority and challenge to nursing. This is a result of the increased incidence of chronic illness and a recognition that effective care can significantly retard its progression and interference in the life of the patient. However, because most care in chronic illness is on an ambulatory basis, effective care is directly related to the extent to which patients practice self-care. As a result, the role of the nurse in working with chronically ill patients is less as a provider of treatment and more a facilitator of self-care by the patient. In addition, characteristics of chronic illness and treatment emphasize the complexity of factors and variables that impact on care. The model of self-care in chronic illness has been described to guide nurses in assessing the major issues that influence patients' participation in self-care. Regular assessment of patients' perceptions and circumstances relative to the variables identified by the model will guide nurses in promoting and supporting self-care by chronically ill patients.     

Spirituality and Chronic Illness

Purpose: To present a comprehensive overview of spirituality and identify strategies to support the spiritual dimensions of nursing care for people with chronic illness, focusing specifically on HIV-related illness and AIDS.
Significance and Scope: The AIDS crisis has brought new emphasis to the need to develop therapeutic interventions to support the coping resources of people living and dying with chronic illness. Conceptual, theoretical, and empirical knowledge related to spirituality was reviewed, integrated, and interpreted within the context of nursing care for this population, emphasizing the spiritual needs of people with HIV-related illness and AIDS.
Conclusions and Implications: Spirituality has evolved beyond religious considerations to encompass multidimensional and existential perspectives that are integral to maintaining well-being for the chronically ill. A deeper understanding of spirituality enhances the potential for nurses to identify spiritual needs and incorporate spiritual caring into practice.     

Adaptation to chronic illness. Analysis of nursing research

The review of reported nursing research on chronic illness has many implications for nursing practice. Results of these studies may be implemented in many of the interventions provided for chronically ill patients. There needs to be collaboration between the researcher and practitioner to share knowledge of interventions that promote adaptation to chronic illness, and to investigate new and innovative therapies. Another contribution to nursing practice is the psychosocial variables that affect adaptation of chronically ill patients. Depending on the health problem and practice setting, nurses need to identify which variable may increase the effectiveness of their interventions and how they can best promote adaptation. Particularly noticeable was the absence of studies on the prevention of chronic illness. Although there is documented evidence of the relationship between stress and illness, and predictions that future environments will be even more stressful, a needed area for nursing research is prevention of chronic health problems. Areas such as stress management, health promotion, relaxation training, and behavior modification are timely subjects for nurses to research for prevention of these problems. There are merits to studying a particular chronic health problem in depth and in studying the commonalities among several chronic illnesses. With knowledge of both the physical and psychosocial, nurses are in an ideal position to contribute to the knowledge base of human responses to chronic illnesses.     

Care of patients with chronic obstructive pulmonary disease in primary health care

Aim.  This paper is a report of a study of nurses' perceptions of caring for patients with chronic obstructive pulmonary disease.
Background.  Chronic obstructive pulmonary disease is a global health problem and the number of patients being treated with this disease in primary healthcare settings is increasing. This places new demands on the nurses involved.
Method.  A phenomenographic approach was adopted, using a purposive sample. Data were generated between February and May 2003 from 20 interviews with district nurses and general nurses who cared for patients in primary healthcare settings with chronic obstructive pulmonary disease.
Findings.  In most cases, nurses cared for older people with moderate to severe chronic obstructive pulmonary disease. They described this care from two overall orientations: task and individual. The nurses' perceptions of the care of these patients were described as creating commitment and participation by establishing a good relationship with patients and supporting them in their personal care, educating patients by supplying information and knowledge in various ways, co-operation by co-operating with or referring to other caregivers, and arranging and implementing clinical examinations and treatments.
Conclusion.  The type of care depended on who the patient met: either a task-oriented nurse or an individual-oriented nurse. Therefore, nursing programmes should pay special attention to the support and guidance of new and inexperienced and task-oriented nurses. Healthcare planners should take into consideration the need for individualized care when organizing care and allocating resources for chronically ill people.     

Chronic disease and severe disability among working-age populations

BACKGROUND: Recent work has shown that rates of severe disability, measured by the inability to perform basic activities of daily living, have been rising in working age populations. At the same time, the prevalence of important chronic diseases has been rising, while others falling, among working age populations. Chronically ill individuals are more likely than others to have activity of daily living limitations. OBJECTIVE: We examine the extent to which chronic disease trends can explain these disability trends. DATA: We use nationally representative survey data from the 1984-1996 National Interview Survey, which posed a consistent set of questions regarding limitations in activities of daily living over that period. METHODS: We decompose trends in disability into 2 parts-1 part due to trends in the prevalence of chronic disease and the other due to trends in disability prevalence among those with chronic disease. RESULTS:: Our primary findings are that for working age populations between 1984 and 1996: (1) disability prevalence fell dramatically among the nonchronically ill; (2) rising obesity prevalence explains about 40% of the rise in disability attributable to trends chronic illness; and (3) rising disability prevalence among the chronically ill explains about 60% of the rise in disability attributable to trends in chronic illness. CONCLUSIONS: Disability prevention efforts in working age populations should focus on reductions in obesity prevalence and limiting disability among chronically ill populations. Given the rise in disability among these population subgroups, it is unclear whether further substantial declines in elderly disability can be expected.     

Management of complex medication regimes in chronic illness - challenges and support needs from the health professional's view

While chronic illness are mostly treated with pharmaceutical means, the management of medication regimes in everyday life often remains inadequate, especially for elderly people. In Germany, most efforts to change this situation focus on the role of physicians or pharmacists respectively. In contrast, this study concentrates on home care nurses and posits their potential to improve the management of complex medication regimes. To explore the professional's view 26 expert interviews with representatives of the different healthcare professions were conducted and analysed. The results indicate that regardless of their profession, all interviewees see a need to modify existing medication regimes and share the view that there is a necessity of communicative and educational support of patients. They also agree that improvements in the management of medication require a multi-professional approach and that home care nurses could provide substantial support to chronically ill in managing their daily medication regimes. Nevertheless, the experts also report structural and professional barriers to hinder professionals in meeting these demands. We conclude that an enhancement of nurses' clinical and educational skills is inevitable, if they are to support chronically ill in managing their daily medication regimes in cooperation with other professions.     

Managing the caseload: a qualitative action research study exploring how community children's nurses deliver services to children living with life-limiting, life-threatening, and chronic conditions.

PURPOSE; The number of children living with life-limiting, life-threatening, and chronic conditions nursed at home/in the community is increasing. There is limited literature on how community children's nurses (CCNs) manage their caseloads. DESIGN AND METHODS: A qualitative-action research study used in-depth interviews. RESULTS: The study generated a number of insights about the sorts of phenomena that contribute to CCNs' perceptions of workload. Themes included strategy, being proactive, purposeful visit, and knowing families. PRACTICE IMPLICATIONS: Using a workload tool may help CCNs manage caseloads. Further work in other areas is required to identify issues of cultural specificity.     

Frank's story of nursing art: Ask me who I am.

This patient's story was constructed from a study designed to describe how the art of nursing was perceived and understood by patients during a critical illness. Two in-depth interviews were conducted during the recovery phase of this person's illness to answer the question "When is nursing (considered) art?" The initial lead-in to the discussion was, "Tell me a story about a nursing situation that really stood out in your mind--one that was significant and meaningful." The interviews were tape recorded, transcribed, condensed into a short story, and shared with the participant. The researcher, also, composed a response to the person's story that personally expressed what the story triggered for her. Undergraduate nursing students were invited to reflect and respond to the "aesthetic face" of nursing from the perspective of a person who was nursed while critically ill. An example of a student response is included.     

Justine's story of nursing art: The presentation of nursing.

This patient's story was constructed from a study designed to describe how the art of nursing was perceived and understood by patients during a critical illness. Two in-depth interviews were conducted during the recovery phase of this person's illness to answer the question, "When is nursing (considered) art?" The initial lead-in to the discussion was, "Tell me a story about a nursing situation that really stood out in your mind--one that was significant and meaningful." The interviews were tape recorded, transcribed, condensed into a short story and shared with the participant. The researcher, also, composed a response to the person's story that personally expressed what the story triggered for her. Undergraduate nursing students were invited to reflect and respond to the "aesthetic face" of nursing from the perspective of a person who was nursed while critically ill. An example of a student response is included.     

Social competence of school-aged children with chronic illnesses.

This study examines social competence among 67 chronically ill children, aged 7 to 14 years, whose families participated in a grounded theory study of how families define and manage a child's chronic illness. Child Behavior Check List ratings (Achenbach & Edelbrock, 1983) by both fathers and mothers indicated a significantly greater risk for social competence difficulties among the chronically ill children as compared with the normative sample. Case vignettes, drawn from extensive interviews with family members, are used to show contrasting styles of family management and child coping and to suggest nursing interventions aimed at fostering social competence.     

'The intruder': spouses' narratives about life with a chronically ill partner

Aim. The aim of this study was to illuminate the meaning of middle‐aged spouse's experiences of living with a chronically ill partner. A purposive sample of four female spouses was selected for interviews using a narrative approach. Background. When someone is diagnosed with a chronic illness, it is easy to understand that a considerable number of devastating consequences follow, both for the afflicted as well as for the family. Families often feel neglected and that their problems and needs are underestimated, if they do not personally draw attention to this fact. Methods. A phenomenological hermeneutic method, inspired by the philosophy of Ricoeur, was used when interpreting the interview text. Results. The experiences of spouses living with a chronically ill partner often brought a feeling of detachment from their partner's lives. The women experienced changes in their relationships because of their partners’ disabilities; they had emotions of loneliness, despite living together as a couple. Through their actions, the women sought reassurance and support in order to maintain a meaningful partnership with their spouses and this is expressed in three themes: feelings of limitation, the struggle of everyday life and a striving for normalization. Conclusions. Middle‐aged women living with a chronically sick partner are still of an active disposition and regard themselves as still being in mid‐life. They wish to be loved as a wife and not as a care provider. Relevance to clinical practice. The findings from this study can help increase the knowledge and understanding of the problems and concerns encountered by middle‐aged spouses living with chronically ill partners and can be useful in the education and supervision of nurses and in relationship with relatives.     

I am not alone: spirituality of chronically ill rural dwellers.

Spirituality plays a vital role in adjusting to chronic illness and rehabilitation nurses strive to gain understanding of their patients' spirituality in order to improve patient care and outcomes. The purpose of this qualitative study was to explore the nature of spirituality in chronically ill rural dwellers and how it relates to their illness. As a part of this pilot project, 10 women with chronic illness volunteered to participate in a phone interview to discuss their spirituality. Content analysis was used to analyze the data. The theme Means the World to Me described what spirituality meant to participants. The following themes described how spirituality related to chronic illness: I Am Not Alone, Putting on a Happy Face, Others Are Worse Off, Transcending Despair and Letting Go. Participants were able to use spiritual coping measures to transcend despair. Results from this study provide rehabilitation nurses with insight into the spirituality needs of chronically ill rural-dwelling women.     

Nursing to care or caring to nurse: a qualitative investigation of perceptions of new recruits

This article discusses the perceptions of nine student nurses at the commencement of a 3-year diploma programme in nursing. In particular, it focuses on new recruits' perceptions of nursing. As part of a larger longitudinal study which examines the impact of the nursing curriculum on perceptions of health, data were collected from a sample of students concerning their perceptions of nursing, health, illness and the course. Content analysis of indepth interviews identified four themes concerning perceptions of nursing. These were caring, nurture, healing and self-development. These themes are discussed in relation to the student nurses life experiences and in the context of a notion of health as a central goal for nurse education. The students' perceptions of nursing at the commencement of the course suggest that nursing may be a moral choice as an occupation underpinned by the desire to do something worthwhile, whilst the relationship between nursing and health was not explicit.     

How do nursing students regard their future career? Career preferences in the post-modern society

This article presents findings from a study of 301 Norwegian nursing students' opinions of their future career. The initial survey took place 7 months after the commencement of nursing training in 1998/99 with a follow-up after 2 1/2 years. Data was collated using a questionnaire with closed questions and supplemented by semi-structured in-depth, audio taped interviews concerning the students' professional socialisation. The findings from the initial survey indicate that motives like human contact, helping others and job security (i.e. low risk of being laid off) were important. Plans for further education after finishing the bachelor programme in nursing were abundant. Analysis of the second data-set will show whether there is a change in the students' plans for their future education and career. For nearly 80% of the students it was very important that the bachelor degree could serve as a basis for further education. Multiple regression analysis showed that nursing students who emphasise this importance are less interested in giving care and help to others, and this attitude is confirmed in the interviews. Career preferences were often midwifery, public health or practice in high tech areas like anaesthetics, and not care for chronically ill or elderly patients; areas where there is a shortage of nurses.     

Frances's story of nursing art: The most wonderful person in the world.

This story is the second in a series constructed from a study designed to describe how the art of nursing was perceived and understood by patients during a critical illness. Two in-depth interviews were conducted during the recovery phase of this person's illness to answer the question "When is nursing (considered) art?" The initial lead-in to the discussion was, "Tell me a story about a nursing situation that really stood out in your mind-one that was significant and meaningful," and, "What was the experience like for you?" The interviews were tape recorded, transcribed, condensed into a short story, and shared with the participant. The researcher also composed a "response" to the person's story that personally expressed what the story triggered for her. Undergraduate students were invited to reflect and respond to the "aesthetic face" of nursing from the perspective of a person who was nursed while critically ill. Two examples of student response are included.     

Student nurses' lived experience of the sudden death of their patients

This phenomenological study looks at the lived experience of third-year student nurses caring for dying patients in surgical, medical and elderly care units. Informal interviews were tape recorded and interpretive analysis was applied to narrative accounts of the nursing students' experiences. Themes which emerged from the students' narrative accounts included sudden death experience, vulnerability and support. These are evaluated in terms of their meaning for students and the possible implications for clinical care. In addition, the use of students' narratives is also suggested as a valuable learning tool both within clinical and academic frameworks.