Anneli Ozanne

Factors that facilitate and hinder the manageability of living with amyotrophic lateral sclerosis in both patients and next of kin

AIM AND OBJECTIVES This study aims to illuminate factors that facilitate and hinder the manageability of living with amyotrophic lateral sclerosis in patients and next of kin. Fourteen patients and 13 next of kin were interviewed. BACKGROUND The whole family becomes affected when a person gets the disease. Therefore, it is important to identify strategies for managing the life situation among both patients and their next of kin. DESIGN A qualitative descriptive study. METHOD This study based on individual interviews was performed in spring 2007. The interviews were subjected to qualitative content analysis. RESULTS The results indicate constant fluctuation between opportunities and limitations in individual ability - of patients and family members - to manage the life situation. Both patients and next of kin devised strategies to manage their situations through acceptance, living in the present and perceiving real presence and support from family, friends and authorities. Dysfunctional relationships with family members, friends, or authorities reduced the manageability of the situation. Furthermore, patients experienced difficulties managing their situations when forced into passivity and increased dependence. Next of kin experienced decreased ability to manage because of burden, lack of own time and feelings of being controlled. CONCLUSION The fluctuations in manageability and the similarities and differences between the pairs, indicate the importance of support, both for the individual and the family. RELEVANCE TO CLINICAL PRACTICE Fluctuations in manageability and similarities and differences between approaches to managing the situation suggest a need for input from caregivers, for the whole family. Family members need support and time for their own needs and also the opportunity to increase their awareness and understanding of the needs of other family members. This study may give health personnel insight into how to help families devise strategies to manage a complex life situation.

Symptom Distress Profiles in Hospitalized Patients in Sweden: A Cross-Sectional Study

Symptom distress profiles of patients with a variety of diagnoses at two hospitals in Sweden were examined using a point-prevalence cross-sectional survey design. The sample included 710 patients present on internal medicine, surgery, geriatric, and oncology acute care hospital wards of each hospital on a single day. Symptom distress data were collected via structured interviews using a 0-10 numeric rating scale (NRS). Fatigue was the most prevalent symptom, experienced by 76.2% of the patients, followed by pain (65.2%) and sleeping difficulties (52.8%). Symptoms were fairly distressing (median NRS 5-6). Patients experiencing high distress from fatigue and pain were more likely to be female, living alone, and to have more symptoms. Latent class analysis revealed three symptom distress profiles that differed with respect to the degree of distress and number of symptoms. The profiles were not substantially differentiated by diagnoses. Symptom distress needs to be assessed and treated on an individual basis, rather than predicting distress levels based on diagnosis alone.

Wearables in epilepsy and Parkinson's disease : A focus group study

Wearable sensors that measure movement and physiological variables are attractive for clinical evaluation of neurological diseases such as epilepsy and Parkinsons disease (PD). The aim of this study was to explore perceptions regarding the use of wearable technology in disease monitoring and management as reported by individuals with epilepsy and Parkinsons disease as well as health professionals working with these patient groups.

Differences in Symptom Distress Based on Gender and Palliative Care Designation Among Hospitalized Patients.

Purpose To explore patient-reported symptom distress in relation to documentation of symptoms and palliative care designation in hospital inpatients. Design This cross-sectional study analyzed data from 710 inpatients at two large hospitals in Sweden using the Edmonton Symptom Assessment Scale and the Memorial Symptom Assessment Scale. Chart reviews focused on nurses’ and physicians’ symptom documentation and palliative turning point. Methods Descriptive statistics were calculated for all variables and provided summaries about the sample. Patients were grouped according to gender, age, palliative care designation, and symptom documentation. The t test and chi-square test were used to calculate whether symptom distress varied between groups. A two-way analysis of variance was conducted for multiple comparisons to explore the impact of gender and age on mean symptom distress. Findings Females reported higher levels of symptom distress than did males related to pain, fatigue, and nausea. When comparing symptom distress between males and females with documentation pertaining to symptoms, there were significant differences implying that females had to report higher levels of symptom distress than males in order to have their symptoms documented. Conclusions Females need to report higher levels of symptom distress than do males for healthcare professionals to identify and document their symptoms. It can be hypothesized that females are not receiving the same attention and symptom alleviation as men. If so, this highlights a serious inequality in care that requires further exploration. Clinical Relevance Considering that common reasons why people seek health care are troublesome symptoms of illness, and that the clinical and demographic characteristics of inpatients are changing towards more advanced ages with serious illnesses, inadequate symptom assessment and management are a serious threat to the care quality.

Subjective Experiences of Epilepsy Surgery in Adults

This chapter reviews the limited literature on patients’ subjective expectations and experiences of epilepsy surgery. Patients with drug-resistant epilepsy have widespread fears and misconceptions about epilepsy surgery and often see it as a “last resort.” Their expectations of epilepsy surgery include driving, employment, greater independence, and a better social life, as well as less likely changes such as improved memory and cognition. Patients with more practical expectations have been shown to be more likely to consider surgery a success. Certain gender and racial differences have also emerged in a few studies. Adjustment to life after surgery, especially the need to discard the sick role for those who become seizure-free, has been shown to take several years.

Is blogging a new form of communication in palliative health care? A qualitative research study

AIM To illuminate experiences of living with life-threatening diseases as described in blogs and the experience of blogging about these matters. METHODS A secondary analysis of 21 blogs was performed. RESULTS It was difficult for bloggers to accept what they perceived to be the unacceptable aspects of having an life-threatening disease. They searched for hope and acceptance, and tried to manage their life. They felt strengthened by supportive encounters with health professionals, relatives, friends, and from their blogging. However, they also felt that they were set aside in relation to both health professionals and relatives. CONCLUSION These patients appreciated being able to express their feelings and received support from their readers. Even if patient blogs can be used in health care, research and education, there is a lack of research studies that have examined the benefits of using blogging for any of these purposes.

Callosotomy in children — Parental experiences reported at long-term follow-up

Callosotomy is a palliative surgery method for selected individuals with severe, drug-resistant epilepsy. The aim of this retrospective study was to explore parental experiences of the familys life situation before and long after their child had undergone callosotomy. Semistructured interviews of the parents of 12 children were analyzed using a combination of inductive and deductive qualitative content analysis. Before surgery, parents felt that they lived in a chaotic bubble with an unbearable situation; their child had severe and frequent seizures and had to be looked after constantly. Most parents were both satisfied and dissatisfied with the given support and information. However, if the child did not improve after surgery, parents often felt that the information before surgery had not been adequate. After surgery, they found a glimpse of hope. They felt that the family got a new life; the reduced seizure severity led to a better life situation for the family. The support was described as both good and poor. The family life situation was complex, and even if they were partly satisfied with the support, it was still not enough. However, the life situation was also very stressful because of remaining seizures, behavioral problems, and sometimes, adverse effects of surgery. The families lived in disappointment and difficulty and had to fight for their rights. This indicates that these families need more information and social service coordination both before and long after surgery. They need not only tools to manage the childs disabilities but also substantial help to care for the child and to receive the social support they need.