Mieke Grypdonck

Adherence in antiretroviral therapy: a review of qualitative studies.

Since the introduction of HAART, HIVand AIDSrelated mortality has declined tremendously [1,2]. The continuous, lifelong treatment with antiretroviral therapy has significantly improved life expectancy and turned HIV from a terminal infection into a chronic disease. In HAART, adherence is of utmost importance. Poor adherence, indeed, may lead to medication failure, viral mutations and development of drug resistance [3,4]. Future treatment options become limited because of cross-resistance [5]. The risk of transmission of resistant viruses makes adherence a public health concern [6,7]. Research and daily practice have shown that strict adherence is difficult to achieve for many of the HIVinfected patients treated with antiretroviral therapy [8,9]. Adherence to HAART requires patients to behave in a way that cannot easily be incorporated into daily life.

Moral Problems Experienced by Nurses when Caring for Terminally Ill People: a literature review

This article is a review of the literature on the subject of how nurses who provide palliative care are affected by ethical issues. Few publications focus directly on the moral experience of palliative care nurses, so the review was expanded to include the moral problems experienced by nurses in the care of the terminally ill patients. The concepts are first defined, and then the moral attitudes of nurses, the threats to their moral integrity, the moral problems that are perceived by nurses, and the emotional consequences of these moral problems are considered in turn. The results show that the moral behaviour of nurses, which is theoretically grounded in commitment to care and to the patient, appears to be shaped by specific processes that lead to engagement or to mental and behavioural disengagement in morally difficult situations. Nurses often appear to fail to recognize the moral dimensions of the problems they experience and also to lack the skills they need to resolve moral problems adequately. Although the findings show that several elements that are beyond the control of nurses, owing to their lack of autonomy and authority, influence their moral experience, intrinsic factors such as feelings of insecurity and powerlessness have a profound effect on nurses’ perceptions and attitudes in the face of moral problems. The moral problems perceived by these nurses are related to end-of-life issues, communication with patients, the suffering of patients, and the appropriateness of the medical treatment.

Living with dementia from the perspective of older people: Is it a positive story?

Dementia, even at an early stage, may pose problems and challenge ones quality of life. Having accurate knowledge of what one experiences when living with dementia is important for developing proactive care for individuals with dementia and their families. The aim of our Grounded Theory study was to explore what it means for elderly people to live with early-stage dementia. We interviewed 20 elderly people with probable mild dementia and their family members. Living with dementia was often presented as a positive narrative, one that told of only minor problems and which stressed abilities and contentment with life. Being valued, rather than losing ones cognition or identity was central in their experience. More in-depth analyses of participants’ narratives revealed, however, that they were constantly balancing their feelings of value and worthlessness, struggling to remain someone of value. This struggle was prompted by threats posed by dementia and by the persons’ interactions with others. Superficially, a positive narrative may be understood as a lack of awareness or as denial due to cognitive loss. Our findings suggest, however, that we should look beyond this superficial view and seek to understand the narrative as an expression of ones attempt to counterbalance devaluation.

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 Strausss 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.

Prevalence of Symptoms in Older Cancer Patients Receiving Palliative Care: A Systematic Review and Meta-Analysis

CONTEXT Symptom control is an essential part of palliative care and important to achieve optimal quality of life. Studies showed that patients with all types of advanced cancer suffer from diverse and often severe symptoms. Research focusing on older persons is scarce because this group is often excluded from studies. Consequently, it is unclear which symptoms older palliative care patients with cancer experience and what is the prevalence of these symptoms. To date, no systematic review has been performed on the prevalence of symptoms in older cancer patients receiving palliative care. OBJECTIVES The objective of this systematic review was to search and synthesize the prevalence figures of symptoms in older palliative care patients with cancer. METHODS A systematic search through multiple databases and other sources was conducted from 2002 until April 2012. The methodological quality was evaluated. All steps were performed by two independent reviewers. A meta-analysis was performed to pool the prevalence of symptoms. RESULTS Seventeen studies were included in this systematic review. Thirty-two symptoms were identified. The prevalence of these symptoms ranged from 3.5% to 77.8%. The most prevalent symptoms were fatigue, excretory symptoms, urinary incontinence, asthenia, pain, constipation, and anxiety and occurred in at least 50% of patients. CONCLUSION There is a high degree of uncertainty about the reported symptom prevalence because of small sample sizes, high heterogeneity among studies, and the extent of instrument validation. Research based on rigorous methods is needed to allow more conclusive results.

Advance Care Planning in terminally ill and frail older persons

OBJECTIVE Advance Care Planning (ACP) - the communication process by which patients establish goals and preferences for future care - is encouraged to improve the quality of end-of-life care. Gaining insight into the views of elderly on ACP was the aim of this study, as most studies concern younger patients. METHODS We conducted and analysed 38 semi-structured interviews in elderly patients with limited prognosis. RESULTS The majority of participants were willing to talk about dying. In some elderly, however, non-acceptance of their nearing death made ACP conversations impossible. Most of the participants wanted to plan those issues of end-of-life care related to personal experiences and fears. They were less interested in planning other end-of-life situations being outside of their power of imagination. Other factors determining if patients proceed to ACP were trust in family and/or physician and the need for control. CONCLUSIONS ACP is considered important by most elderly. However, there is a risk of pseudo-participation in case of non-acceptance of the nearing death or planning end-of-life situations outside the patients power of imagination. This may result in end-of-life decisions not reflecting the patients true wishes. PRACTICE IMPLICATIONS Before engaging in ACP conversations, physicians should explore if the patient accepts dying as a likely outcome. Also the experiences and fears concerning death and dying, trust and the need for control should be assessed.

The Process and the Meaning of Hope for Family Members of Traumatic Coma Patients in Intensive Care

In this study, the authors examined the process that family members go through when they are confronted with traumatic coma. They conducted 24 semistructured interviews with 22 family members of 16 coma patients and analyzed the data using the constant comparative method as proposed by grounded theory. Hope was the most prominent theme. It can be described as keeping a possible positive outcome in mind in an uncertain situation, knowing that this outcome is unlikely to happen. Hope was found to evolve stepwise up and down, dependent on further events and information: big steps at first, smaller later on. Hope helps family members to keep going and to manage care for the patient and for each other. Family members were found to protect themselves against false or unjustified hope by seeking valid information. They alternate their moments of despair, and in their interactions they respect each others hope.

Palliative Care, Care for Life: A Study of the Specificity of Residential Palliative Care

In this study, the authors describe the concept of palliative care as applied in a palliative care unit. They conducted in-depth interviews with 8 patients, 9 relatives, and 24 caregivers from two residential palliative care units. Observation of the care and of team meetings and analysis of patient records provided additional data. Palliative care involves a specific concept of care, the central focus of which is life. This is realized by two strategies. The first is to create space to live by diverting attention from the sick body, moving the illness into the background. The second is to fill the space as meaningfully as possible, so that patients can enjoy life even in the face of death. The quality of the caregiving process in palliative care is determined by a range of conditions and processes that reflect its complexity.

Nursing Students’ Responses to Ethical Dilemmas in Nursing Practice

In literature as well as in nursing practice a growing concern about nurses’ ethical competence can be observed. Based on the cognitive theory of moral development by Kohlberg, this research examined nursing students’ ethical behaviour in five nursing dilemmas. Ethical behaviour refers not only to the ethical reasoning of nursing students but also to the relationship between reasoning and behaviour. Kohlberg’s definition of morality was refined by adding a care perspective. The results show that the majority of students can be located in the fourth moral stage according to Kohlberg’s theory, that is, the conventional level of moral development. This finding implies that students are still guided by professional rules, norms and duties, and have not (yet) succeeded in making personal ethical decisions on the basis of their own principles and acting according to such decisions.

The quality of the working alliance between chronic psychiatric patients and their case managers: process and outcomes

The concept of a working alliance is rooted in psychotherapy and has been studied extensively in that field. Much less research has been conducted into working alliances between chronic psychiatric patients and their case managers. The aim of this review was to identify what is known about the working alliance between chronic psychiatric patients and their case managers. An extensive survey of the literature produced 14 articles for this review. The results of studies conducted show that a good working alliance has positive effects on the functioning of patients, and that the quality of the alliance depends on both patient characteristics and the behaviour of the case managers. The results also indicate that the working alliance is largely determined in the first 3 months of the contact. Further research into the development of working alliances is necessary.