| 1. |
- Jakobsson Larsson, Birgitta, 1965-, et al.
(author)
-
A prospective study of quality of life in amyotrophic lateral sclerosis patients
- 2017
-
In: Acta Neurologica Scandinavica. - : Hindawi Limited. - 0001-6314 .- 1600-0404. ; 136:6, s. 631-638
-
Journal article (peer-reviewed)abstract
- OBJECTS: The aim of this prospective and longitudinal study was to describe individual quality of life in patients with amyotrophic lateral sclerosis (ALS) and its correlations with physical function and emotional well-being from diagnosis and over time.MATERIALS AND METHODS: Thirty-six patients were included in the study. Individual quality of life was measured with the Schedule of Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), illness severity was assessed using the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALS FRS-R), and emotional distress was measured using the Hospital Anxiety and Depression Scale (HADS). Data were collected from diagnosis and thereafter, every six months for a period of two years. Twelve patients completed the 24-month follow-up.RESULTS: Family, friends and own physical health were important for overall quality of life, from diagnosis and during the disease progression. Most patients had good quality of life, which remained stable, despite changed physical functions. Several patients scored above the cut-off score for doubtful and clinical anxiety and depression early on after diagnosis, and there was a significant decrease in anxiety over time. Soon after diagnosis, there was a correlation between depression and quality of life.CONCLUSION: The family, social relations and own physical health are important for overall quality of life in patients with ALS. Thus, supporting the family and facilitating so that patients can continue to stay in contact with friends are important aspects during the disease. Conducting an early screening for depression can be important for preventing decreased quality of life.
|
|
| 2. |
- Jakobsson Larsson, Birgitta, 1965-, et al.
(author)
-
Quality of life among relatives of patients with amyotrophic lateral sclerosis : A prospective and longitudinal study.
- 2022
-
In: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 20:2, s. 203-211
-
Journal article (peer-reviewed)abstract
- OBJECTIVE: Relatives are often central in caring for patients with amyotrophic lateral sclerosis (ALS), involving considerable physical, emotional, and social challenges. The aim of this study was to describe individual quality of life (iQoL) among relatives of patients with ALS, from diagnosis through disease progression.METHOD: A total of 31 relatives were included. Data collection was performed at five time points: 1-3 months after their relatives had been diagnosed with ALS and every 6 months for 2 years. Quality of life was determined using the Schedule of Evaluation of Individual Quality of Life - Direct Weighting (SEIQoL-DW), emotional distress with the Hospital Anxiety and Depression Scale (HADS), and the illness severity of the patients was determined with the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALS FRS-R).RESULTS: The SEIQoL-DW involves participants nominating the important life areas. The most nominated areas were family, friends, health, and leisure. Although most relatives had overall good and stable iQoL, several had scores indicating poor iQoL on some occasions during the disease trajectory. The relatives' iQoL correlated with emotional well-being and the patient's physical function at different time points.SIGNIFICANT OF RESULT: Social relations, emotional well-being, and rapid decline in the patient's physical function influence the relatives' iQoL. Measuring both emotional well-being and iQoL, with a focus on the relatives' own descriptions of perceived iQoL and those factors contributing to their iQoL during the disease trajectory may improve the possibility of identifying and supporting those relatives with poor iQoL.
|
|
| 3. |
- Jakobsson Larsson, Birgitta, 1965-
(author)
-
Quality of life, Coping and need for Support during the ALS disease trajectory
- 2016
-
Doctoral thesis (other academic/artistic)abstract
- The overall aim of this thesis was to investigate quality of life, coping and emotional distress (i.e. anxiety and depression) among newly diagnosed ALS patients. An additional aim was also to investigate relatives’ experiences of the care for the patient and the support they received for themselves during the disease progression.The most nominated areas of importance for the patient’s overall QoL were family, friends and own physical health. Most patients rated their QoL as good, which did not change at subsequent measurement, despite their physical function having changed for the worse during disease progression. Some patients had symptoms of clinical anxiety and depression during the first year after diagnosis. The total quality of life score did not correlate with physical function but with depression early on after diagnosis. Most patients used support and independence as strategies to cope with the disease during the first six months after diagnosis. There were few changes early on after the diagnosis, and the patients used several different strategies. The results show that the use of coping strategies remained stable over time. Both physical function and emotional distress correlated significant with different coping strategies, with some variation during the disease progression. Relatives experienced the care of their loved one as positive and based on the patient’s needs and desires. The treatment, knowledge, support and help from the staff were important for the relatives’ feeling of security. Different factors influence the use of support for themselves. The relatives did not think of their own needs, but their focus was rather on the patient.The results of the thesis highlight the importance of providing support both to patients and their relatives during the disease progression. With early and regular evaluation on quality of life, coping and emotional well-being among the patients, the health professionals may be able to support the patients based on their specific needs, which probably will increase their quality of life.
|
|
| 4. |
- Jakobsson Larsson, Birgitta, 1965-, et al.
(author)
-
Registered nurses' experiences on job satisfaction in nursing home settings
- 2024
-
In: Nursing Open. - : John Wiley & Sons. - 2054-1058. ; 11:6
-
Journal article (peer-reviewed)abstract
- AimTo describe what registered nurses' experience to be important to job satisfaction in nursing home settings.DesignThis is a qualitative study based on data from individual interviews.MethodsSixteen registered nurses working in nursing homes were interviewed, and their responses were analysed with systematic text condensation.ResultsA 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.ConclusionIn 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.
|
|
| 5. |
- Jakobsson Larsson, Birgitta, 1965-, et al.
(author)
-
Symptoms of anxiety and depression in patients with amyotrophic lateral sclerosis and their relatives during the disease trajectory
- 2023
-
In: Journal of the Neurological Sciences. - : Elsevier. - 0022-510X .- 1878-5883. ; 455
-
Journal article (peer-reviewed)abstract
- OBJECTS: The aim of this study was to describe the presence of anxiety and depression among patients with Amyotrophic Lateral Sclerosis (ALS) and their relatives from diagnosis and during the disease progression. An additional aim was to explore if the patient's physical function correlated with the patients' or relatives' anxiety and depression.METHODS: A prospective and longitudinal study, including 33 patients with ALS and their relatives who filled out the Hospital Anxiety and Depression Scale (HADS) at the time of diagnosis and over a period of two years. The patient's physical function was measured with the revised Amyotrophic Lateral Sclerosis Functional and Rating Scale (ALS FRS-R).RESULTS: The results showed that many patients (45%) and relatives (58%) had symptoms of anxiety and that 13% of the patients and 29% of the relatives had symptoms of depression soon after the patient had been diagnosed with ALS. The prevalence of anxiety decreased over time in the group of patients but remained stable in the group of relatives. Relatives had more symptoms of anxiety compared to patients. There was a correlation between the patient's physical function and HADS in the group of relatives; however, no correlation was found in the group of patients.CONCLUSION: The results showed that many patients and relatives suffered from symptoms of anxiety quite soon after their diagnosis, and that many relatives had symptoms of anxiety during the disease trajectory. This highlights the need to continuously measure patients' anxiety/depression level but also to pay attention to symptoms among relatives.
|
|
| 6. |
- Malmstroem, Nina, et al.
(author)
-
Living with a parent with ALS-adolescents' need for professional support from the adolescents' and the parents' perspectives
- 2023
-
In: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. - : Taylor & Francis. - 2167-8421 .- 2167-9223. ; 24:7-8, s. 727-735
-
Journal article (peer-reviewed)abstract
- AimThe 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.MethodsA 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.ResultsBoth 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.ConclusionGiven 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.
|
|
| 7. |
- Spörndly-Nees, Sören, et al.
(author)
-
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
- 2023
-
In: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523.
-
Journal article (peer-reviewed)abstract
- ObjectivesTo 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.MethodsA 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).ResultsParticipants 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 resultsGreat 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.
|
|
| 8. |
- Åkerblom, Ylva, 1967-, et al.
(author)
-
Pain, disease severity and associations with individual quality of life in patients with motor neuron diseases
- 2021
-
In: BMC Palliative Care. - : BioMed Central (BMC). - 1472-684X. ; 20
-
Journal article (peer-reviewed)abstract
- Background: Up to 85% of people with motor neuron disease (MND) report pain, but whether pain has negative impact on quality of life is unclear. The aim was to study associations between pain, disease severity and individual quality of life (IQOL) in patients with MND.Methods: In this cross sectional study, 61 patients were recruited from four multidisciplinary teams in Sweden, whereof 55 responded to the pain measure (The Brief Pain Inventory – Short form) and were included in the main analyses. Disease severity was measured with the Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised Version, and individual quality of life was measured with a study-specific version of the Schedule for the Evaluation of Individual Quality of Life - Direct Weighting.Results: Forty-one (74%) of the participants who answered BPI-SF (n = 55) reported pain. Thirty-nine (71%) of those reported pain during the past 24 h. The severity of pain was on average moderate, with eight participants (14%) reporting severe pain (PSI ≥ 7). Satisfaction with IQOL for the entire sample was good (scale 1-7, where 1 equals poor quality of life): median 5, interquartile range (IQR) 2.75 and there was no difference in satisfaction with IQOL between those reporting pain/not reporting pain (median 5, IQR 2/median 5, IQR 3.5, Mann-Whitney U = 249, p = 0.452). There was neither any correlation between pain severity and satisfaction with IQOL, nor between disease severity and satisfaction with IQOL.Conclusions: The results add to the hypothesis that associations between non-motor symptoms such as pain prevalence and pain severity and IQOL in MND are weak. Pain prevalence was high and the results pointed to that some participants experienced high pain severity, which indicate that pain assessments and pain treatments tailored to the specific needs of the MND population should be developed and scientifically evaluated.
|
|
| 9. |
|
|
