Adolescents' challenging and grief-filled transitions when living with a parent with ALS: A qualitative interpretive study.

OBJECTIVE: The study aimed to explore the meaning for adolescents of living with a parent with amyotrophic lateral sclerosis (ALS). METHODS: The design is qualitative. Interviews were conducted between December 2020 and April 2022 with 11 adolescents (8-25 y), living in households with a parent with ALS in Sweden. The analysis was phenomenologically hermeneutical. RESULTS: The adolescents were in a difficult and exposed situation, especially if the parent had a severe disability and assistant care providers were in the home. Witnessing the gradual loss of the parent in an indefinite battle against time, while still needing them, elicited grief-filled and hard-to-manage emotions. Everyday life was turned upside down, resulting in greater responsibility for the adolescents, not only in helping with household chores and assisting the ill parent, but also in emotionally protecting both parents. It forced the adolescents to mature faster and put their own life on hold, triggering experiences of being limited. This, together with changing family roles yet being more attached to home, reinforced the imbalance in the adolescents' lives. The interpreted whole of the adolescents' narratives revealed that living with a parent with ALS meant a challenging and grieving transition during an already transition-filled adolescence, which left the adolescents struggling to keep a foothold on a life torn apart. CONCLUSION: The unbalanced life situation may hinder the adolescents' identity formation and emancipation, which are developmentally important for managing a healthy and independent adulthood. The results emphasize the importance of early targeted support to reach this vulnerable group in order to secure their health.

Registered nurses' experiences on job satisfaction in nursing home settings.

AIM: To describe what registered nurses' experience to be important to job satisfaction in nursing home settings. DESIGN: This is a qualitative study based on data from individual interviews. METHODS: Sixteen registered nurses working in nursing homes were interviewed, and their responses were analysed with systematic text condensation. RESULTS: A total of six categories were developed to describe various aspects of job satisfaction among registered nurses at nursing homes: meaningfulness is essential, to possess control and manageability is central, a possibility to balance daily challenges with professional development, supportive leadership is imperative, the nursing team's competence and companionship, and being confident in one's own profession. CONCLUSION: In the present study, meaningfulness was essential to job satisfaction, and work was experienced to be meaningful and engaging when the demands were manageable, the workload controllable, and when the registered nurses felt supported by management and co-workers. Conversely, if the demands were too high, the workload was beyond their control and the nurses felt unsupported, then the work felt meaningless and thus unsatisfactory.

Pain in patients with motor neuron disease: Variation of pain and association with disease severity, health-related quality of life and depression - A longitudinal study.

OBJECTIVES: To describe levels of pain over time during disease progression in individual patients and for a total sample of patients with motor neuron disease (MND), respectively, and to examine associations between pain, disease severity, health-related quality of life (HRQOL), and depression. METHODS: A prospective cohort study was conducted on 68 patients with MND, including data collected on five occasions over a period of 2 years. Pain was assessed using the Brief Pain Inventory - Short Form. Depression was assessed using the Amyotrophic Lateral Sclerosis (ALS)-Depression-Inventory (ADI-12). Disability progression was measured using the Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised Version (ALSFRS-R). HRQOL was assessed using the Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-5). RESULTS: Participants reported great individual variation over time. The median level of pain was 4 (min 0 and max 10). Higher levels of pain during the last 24 h were associated with higher depression scores (ADI-12), poorer quality of life (ALSAQ-5), and lower reporting of fine and gross motor skills (ALSFRS-R). Baseline pain levels did not predict future values of depression and function. Individuals reporting average pain >3 experienced more hopelessness toward the future and reported higher depression scores compared with participants reporting average pain <3. SIGNIFICANCE OF RESULTS: Great within-individual variation of pain intensity was reported. Pain intensity was associated with depression, function and HRQOL cross-sectionally, but it did not have a strong prognostic value for future depression, function, or HRQOL. Patients with MND should be offered frequent assessment of pain and depressive symptoms in person-centered care, allowing for individualization of treatment.

Living with a parent with ALS - adolescents' need for professional support from the adolescents' and the parents' perspectives.

AIM: The aim of the study was to qualitatively investigate the adolescents' need for professional support when a parent has amyotrophic lateral sclerosis (ALS) - from the adolescents' and the parents' perspectives. METHODS: A total of 37 individual semi-structured single interviews with 18 families were conducted, including 11 adolescents aged 8-25 and 26 parents, 13 with ALS and 13 co-parents. Data was analysed using qualitative content analysis. RESULTS: Both adolescents and parents described the adolescents as needing professional support but found it difficult to articulate this need. However, the results indicate that the adolescents needed help in bringing manageability into their lives due to the uncertainty of living with the illness in the family. It was therefore essential to ensure that the adolescents were not forgotten in the disease context and that their needs for being involved as well as for obtaining information and understanding, was addressed. The importance of offering the adolescents support early was emphasized, but also of actively helping the families to master challenges in their everyday life. Support adapted to each family's unique situation and preferences was desired, as the adolescents' need for support seemed to be individual, disease-dependent and varied during different phases. CONCLUSION: Given the adolescents' need for information and understanding, healthcare professionals must actively work to reach the adolescents as early as possible. It is crucial to ensure that the adolescents are given the opportunity to be involved based on their own conditions, as well as to support the families to strengthen their communication.

The multiple faces of pain in motor neuron disease: a qualitative study to inform pain assessment and pain management.

Purpose: The aim was to explore personal experiences of pain in people with motor neuron disease.Materials and methods: Sixteen participants were individually interviewed on one occasion concerning their experiences of presentation, consequences, and management of pain. Qualitative content analysis with researcher triangulation was used to synthesize and interpret data.Results: Four themes emerged as the result of the analysis: (1) The multiple faces of pain, (2) The thin line between experience of pain and no pain, (3) The negative effects of pain on role functioning (4) Successful coping with pain requiring personal effort and competent engagement. The important findings were the experiences of unpredictability of pain breakthroughs, the efforts required to manage pain, consequences for activity and quality of life, and the suffering induced by diminishment and neglect of pain from both patients and staff.Conclusions: Pain in motor neuron disease seems to have certain and multiple characteristics, which is why there is a need to develop and implement pain assessment methods adapted to this population. Such methods may help make pain more predictable, and increase the possibilities to provide effective and individually tailored pain treatment.IMPLICATIONS FOR REHABILITATIONPain is a common, but often neglected, ailment in motor neuro disease, which deserves more attention from health care.Staff should provide information about the pain being possible to treat successfully with medication, by contrast to the possibility of curing the disease itself.Pain assessments should be implemented during the entire course of the disease, covering a time frame long enough to cover characteristic fluctuations of pain.Whenever possible, facilitate the performance of painful activities of daily living as much as possible to make room for engagement in other personally valued activities of importance for individual quality of life.

Coping with amyotrophic lateral sclerosis; from diagnosis and during disease progression.

To evaluate coping strategies among patients with Amyotrophic lateral sclerosis starting with diagnosis and during the disease progression, as well as investigate changes and correlations between coping strategies, emotional well-being and physical function. A total of 36 patients participated in the study. The patients filled out the Hospital Anxiety and Depression Scale and the Motor Neuron Disease Coping Scale. Physical function was measured using the revised ALS functional rating scale. Data were collected regularly from diagnosis and over a two years period. As a way to cope with the disease patients relied on both problem focused and emotional focused strategies. The use of coping strategies remained stable. Both physical disabilities and emotional well-being was related to some coping strategies, with some variation during the disease progression. Moreover, some coping strategies were related to symptoms of anxiety and depression. Irrespective of whether the coping strategies affect the emotional well-being or vice versa, the results show the importance of early and continuous evaluation of coping and emotional well-being to ease the emotional distress and provide support to the patient so that he/she can cope with the disease during the disease progression.

Coping strategies among patients with newly diagnosed amyotrophic lateral sclerosis.

AIMS AND OBJECTIVES: To prospectively identify different coping strategies among newly diagnosed amyotrophic lateral sclerosis patients and whether they change over time and to determine whether physical function, psychological well-being, age and gender correlated with the use of different coping strategies. BACKGROUND: Amyotrophic lateral sclerosis is a fatal disease with impact on both physical function and psychological well-being. Different coping strategies are used to manage symptoms and disease progression, but knowledge about coping in newly diagnosed amyotrophic lateral sclerosis patients is scarce. DESIGN: This was a prospective study with a longitudinal and descriptive design. METHODS: A total of 33 patients were included and evaluation was made at two time points, one to three months and six months after diagnosis. Patients were asked to complete the Motor Neuron Disease Coping Scale and the Hospital Anxiety and Depression Scale. Physical function was estimated using the revised Amyotrophic Lateral Sclerosis Functional Rating Scale. RESULTS: The most commonly used strategies were support and independence. Avoidance/venting and information seeking were seldom used at both time points. The use of information seeking decreased between the two time points. Men did not differ from women, but patients ≤64 years used positive action more often than older patients. Amyotrophic Lateral Sclerosis Functional Rating Scale was positively correlated with positive action at time point 1, but not at time point 2. Patients' psychological well-being was correlated with the use of different coping strategies. CONCLUSIONS: Support and independence were the most used coping strategies, and the use of different strategies changed over time. Psychological well-being was correlated with different coping strategies in newly diagnosed amyotrophic lateral sclerosis patients. RELEVANCE TO CLINICAL PRACTICE: The knowledge about coping strategies in early stage of the disease may help the nurses to improve and develop the care and support for these patients.