Encountering the downward phase: biographical work in people with multiple sclerosis living at home

This qualitative study examines how individuals in an advanced stage of multiple sclerosis (MS) who live at home, accommodate to their illness. The downward phase in the illness trajectory of MS often consists of a lengthy period of gradual decline. According to Corbin and Strauss's framework, accommodation is conceptualized as biographical work that refers to the actions taken to retain control over the life course and to give life meaning again. For our purpose semi-structured interviews with 22 people with MS were conducted and compared with 21 interviews with their family caregivers. The analysis consisted of fragmenting and connecting the data and involved close reading and constant comparison. The continuity of biography is at risk since body and performance failures lead to the loss of salient aspects of self. Participants interpret MS as an all-encompassing illness and emphasize the process of having to give up everything. Four case stories are described to demonstrate the complex intertwining of the biographical processes and to show the range in biographical accommodation. Some patients are capable of putting their lives back together again, while others retreat or do not consider MS a part of their lives. The unpredictable course of MS makes it impossible to give new direction to the life course.Multiple sclerosis Chronic illness Biography Illness trajectory The Netherlands Belgium

A systematic review of predictors and screening instruments to identify older hospitalized patients at risk for functional decline

AIMS AND OBJECTIVES: To determine a valid, reliable and clinical user-friendly instrument, based on predictors of functional decline, to identify older patients at risk for functional decline. The predictors of functional decline are initially considered and, subsequently, the characteristics and psychometric qualities of existing screening instruments are investigated. BACKGROUND: Functional decline is a common and serious problem in older hospitalized patients, resulting in a change in quality of life and lifestyle. Studies have shown that 30-60% of older people develop new dependencies in activities of daily living (ADL) during their hospital stay. Adverse health outcomes such as mortality, a prolonged hospital stay, nursing home placement and increased dependency of older people at home are the results. Not only are the personal costs high but also, in a rapidly growing older population, the impact on health-care costs is also high. RESULTS: Age, lower functional status, cognitive impairment, preadmission disability in instrumental activities of daily life (IADL), depression and length of hospital stay were identified as predictors of functional decline. Three screening instruments to identify hospitalized patients at risk for functional decline were found in the literature: the Hospital Admission Risk Profile, the Identification of Seniors at Risk and the Care Complexity Prediction Instrument. The reported validity was moderate. Reliability and the ease of use in the clinical setting were not well described. CONCLUSION: These three instruments should be further tested in a hospitalized older population. RELEVANCE TO CLINICAL PRACTICE: Screening is a first step to identify patients at risk for functional decline and this will make it possible to treat patients who are identified so as to prevent functional decline. Because of their ability to observe and to guide the patients and the overall view they have, nurses play a key role in this proces

Adherence to HAART:processes explaining adherence behavior in acceptors and non-acceptors

In order to explore and clarify the underlying processes which lead to (non)-adherence behavior in patients treated with highly active antiretroviral therapy (HAART), a qualitative study was conducted. Thirty-seven in-depth interviews were held with 30 Caucasian HIV-positive patients. Additional data were collected by diaries kept by some participants. The analysis took place in a cyclic process; selection of themes was alternated with input of new material. Adherence to HAART is mainly influenced by the experience of being HIV positive. Acceptance or non-acceptance of HIV leads to one of two basic stances toward adherence: being determined to be adherent or medication is subordinate to other priorities in life. This stance determines the commitment to therapy and influences how patients cope with adherence. Patients who are determined to be adherent find solutions to adherence problems. Patients who are not determined to be adherent solve problems only if the solution does not compromise important aspects of their lives. Insight is provided into the manner in which prevalent themes; start of HAART, attitude toward medication, HAART in daily life, contextual factors, health and HAART and being informed, influence adherence behavior. Before starting HAART the focus should be on helping the patient to accept HIV as a part of life. The findings need to be taken into account in adherence-promoting interventions

The role of HIV nursing consultants in the care of HIV-infected patients in Dutch hospital outpatient clinics

Objective: In the Netherlands HIV nursing consultants have participated in HIV-care since 1985: their profession has changed with developments in HIV-treatment over time. The study goal was to gather information about their role in HIV-care and to provide an useful example to other (HIV-)care settings over the world. Methods: Interviews were held with HIV nursing consultants from all AIDS treatment centres. Descriptive analyses and statistical tests to detect differences between centres categorized by care model (parallel/unstructured/alternating), were performed. Results: 58% centres perform substitution of care. HIV nursing consultants see almost all patients at least once a year and see all patients when treatment is started/altered. The frequency of consultations for HIV-patients in stable condition varies, 2-4 times a year. Substitution leads to a slight, non-significant decrease in number of consultations. Adherence support is provided at the start of and during treatment. Regular patient discussions are common. All respondents are acquainted with the guidelines. Detailed knowledge of the adherence issues is limited: 58.3% had read the adherence chapter. Conclusion: Substitution of care model is an appropriate and effective method for the management of HIV-infected patients. Practice implications: Further development of and research into this new role of HIV nurse consultants is appropriate. (C) 2009 Elsevier Ireland Ltd. All rights reserved

Strategies to Promote Adherence to Antiretroviral Therapy Applied by Dutch HIV Nurse Consultants:A Descriptive Qualitative Study

This study describes strategies used by Dutch HIV nurse consultants to promote adherence to anti retroviral therapy (ART) and the assumptions on which these strategies were based. The study used a descriptive qualitative design with individual and focus group interviews. Individual semi-structured interviews (n = 23) focusing on adherence-supporting procedures and case-based focus groups (3 groups with 5-7 participants each) focusing on adherence strategies were held with HIV nurse consultants (n = 19). The strategies described were mainly based on experience. Theoretical principles were rarely discussed and participants seldom referred to the literature. Adherence-promoting strategies were identified for two phases: (a) before beginning ART and (b) during follow-up care while on ART Strategies that were not used in one specific phase were categorized under "all phases." Data yielded useful ideas for the care of HIV-infected patients, and findings can be applied to the development and use of adherence-promoting strategies. (Journal of the Association of Nurses in AIDS Care, 21, 489-502) Copyright (C) 2010 Association of Nurses in AIDS Car

Parental experience at the end-of-life in children with cancer: 'preservation' and 'letting go' in relation to loss

For children with incurable cancer death usually is anticipated and preceded by a phase of palliative care. Despite recognition that parents have difficulty adapting to a palliative perspective there is little insight into this process. This study explored, from a parental perspective, the process parents go through when cure is no longer a possibility. A multicenter study using qualitative research was undertaken during the EoL phase. One-time and repeated open interviews were conducted with 44 parents of 23 children with incurable cancer. Feelings of loss play a prominent role during the EoL phase. Dealing with loss is a process of stepwise relinquishing that becomes manifest in an internal struggle between preservation and letting go. Preservation means that parents try to maintain the child's status quo. Letting go means parents give up their resistance to loss in service of their child's well-being. Although the relative measure of each changes over time, parents have great difficulty making the transition because it implies a change in source of control. A timely completion of this transition positively influences the child's well-being as well as the evaluation of enacted parenthood. For parents the essence of the palliative process is not to accept death but to deal with the loss of their child. Although the need to avoid loss and gain control by means of preservation is fully understandable, the study indicated that parents who made the transition to letting go had an increased receptiveness of their child's real situation and needs