People living with ALS/MND tell the diagnosis story : what happened before they knew

Background: Being told that one has a life threatening disease is shattering, but for some people it comes as a relief, following as it does the years of uncertainty and traumatic experiences that lead to diagnosis. The need to debrief the experience is paramount before the story of living with the disease can be told.
Objectives: The purpose of this paper is to describe the extended and often demoralising process of diagnosis for people with ALS/MND.
Methods: Grounded theory methodology was used to explore the life and world of people diagnosed and living with ALS/MND. Data were collected via in-depth interviews with 25 people with the disease, their stories and photographs, poems and books they identified as important, and field notes. The textual data were analysed using constant comparative analysis. All people who volunteered were included in the study. Many participants with communication challenges worked with the researcher to tell their stories.
Results: Participants recounted the processes they experienced prior to the time when they were finally given a reason for the perplexing behaviour of their bodies. The diagnosis story was revealed as a sequence of: ‘recognizing a problem’, ‘seeking medical help’, ‘being on the diagnostic roundabout’, ‘confirming ALS/MND’, ‘reevaluating life and the future’, then ‘living with ALS/MND’. Consequences included a loss of trust in the competence of the health care system, which had implications for seeking help later when living with the disease.
Discussion: Participant distress seemed to have more in common with the stress linked to post-traumatic stress disorder (PTSD). Participants continued to relive the diagnosis experience in their dreams and daily lives many months after diagnosis, which impacted negatively on their well-being. For this group of people, the diagnostic process itself was the traumatic stressor. It seemed that telling their stories gave them the opportunity to debrief and have their words recorded. Debrief support is recommended whenthe ALS/MND diagnosis is finalized, and continued, to prevent long-term reliving of the diagnostic process.
Conclusion: Health professionals continue to address the issues around the process of giving the ‘bad news’ of ALS/MND. This ‘diagnosis story’ may provide additional guidance in addressing the process so as to limit potential harm and promote well-being for people with the disease and their families.

Assessing advanced life support (ALS) competence: Victorian practices

Advanced life support (ALS) assessments are performed to assess nurses’ abilities to recognize cardiac arrest events, and appropriately manage patients according to resuscitation guidelines. Although there is evidence for conducting assessments after initial ALS education, there is little evidence to guide educators about ongoing assessments in terms of methods, format and frequency.

The aim of this study was to determine methods used by educators to assess ALS skills and knowledge for nurses in Victorian intensive care units. This descriptive study used telephone interviews to collect data. Data were analysed using content analysis. Twenty intensive care educators participated in this study. Thirteen educators (65%) were employed in public hospitals, and 7 educators (35%) worked in private hospitals across 12 Level 3 (60%) and 8 Level 2 (40%) intensive care units.

Results showed all educators used scenarios to assess ALS skills, with 12 educators (60%) including an additional theoretical test. There was variability in ALS assessment frequency, assessment timing in relation to initial/ongoing education, person performing the assessment, and the assessor/participant ratio. Nineteen educators (95%) reported ALS skill competency assessments occurred annually; 1 educator (5%) reported assessments occurred every 2 years. Assessments were conducted during a designated month (n = 10), numerous times throughout the year (n = 8), or on nurses’ employment anniversaries (n = 2). All educators reported many nurses avoided undertaking assessments.

Variability in ongoing ALS assessment methods was evident in Victorian intensive care units with some units applying evidence-based practices. Consideration should be given to the purposes and methods of conducting annual ALS assessments to ensure resources and strategies are directed appropriately. To encourage nurses to retain ALS skills and knowledge, regular practices are recommended as an alternative to assessments. However, further research is required to support this notion.

Living with amyotrophic lateral sclerosis/motor neurone disease (ALS/MND) : decision-making about 'ongoing change and adaptation

Aims and objectives. To present a model that explicates the dimensions of change and adaptation as revealed by people who are diagnosed and live with amyotrophic lateral sclerosis/motor neurone disease.

Background. Most research about amyotrophic lateral sclerosis/motor neurone disease is medically focused on cause and cure for the illness. Although psychological studies have sought to understand the illness experience through questionnaires, little is known about the experience of living with amyotrophic lateral sclerosis/motor neurone disease as described by people with the disease.

Design. A grounded theory method of simultaneous data collection and constant comparative analysis was chosen for the conduct of this study.

Methods. Data collection involved in-depth interviews, electronic correspondence, field notes, as well as stories, prose, songs and photographs important to participants. QSR NVivo 2® software was used to manage the data and modelling used to illustrate concepts.

Findings. Participants used a cyclic, decision-making pattern about 'ongoing change and adaptation' as they lived with the disease. This pattern formed the basis of the model that is presented in this paper.

Conclusion. The lives of people living with amyotrophic lateral sclerosis/motor neurone disease revolve around the need to make decisions about how to live with the disease progression and their deteriorating abilities. Life decisions were negotiated by participants to maintain a sense of self and well-being in the face of change.

Relevance to clinical practice. The 'ongoing change and adaptation' model is a framework that can guide practitioners to understand the decision-making processes of people living with amyotrophic lateral sclerosis/motor neurone disease. Such understanding will enhance caring and promote models of care that are person-centred. The model may also have relevance for people with other life limiting diseases and their care.