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1.
Sci Rep ; 13(1): 14540, 2023 09 04.
Article in English | MEDLINE | ID: mdl-37666877

ABSTRACT

Parents of very low birth weight (VLBW) infants in a neonatal intensive care unit experienced additional stress during the SARS-CoV-2 pandemic due to the related restrictions in hospital visiting policies. Our study aimed to compare parents' burdens before and during the pandemic. This survey included 121 parents of 76 VLBW infants in two European Level IV perinatal centers before and during the pandemic. We performed standardized parent questionnaires with mothers and fathers separately to evaluate their emotional stress and well-being. The pandemic worsened the emotional well-being of parents of VLBW infants, particularly of mothers. During the pandemic, mothers reported significantly higher state anxiety levels (48.9 vs. 42.9, p = 0.026) and hampered bonding with the child (6.3 vs. 5.2, 0 = 0.003) than before. In addition, mothers felt more personally restricted than fathers (6.1 vs. 5.2, p = 0.003). Fathers experienced lower levels of stress than mothers; they were equally burdened before and during the pandemic. Restrictions in visiting policies for families of VLBW infants during the SARS-CoV-2 pandemic have a significant negative impact on parental stress and should therefore be applied cautiously.


Subject(s)
COVID-19 , Mothers , Child , Infant , Infant, Newborn , Female , Pregnancy , Humans , Male , SARS-CoV-2 , Intensive Care Units, Neonatal , Pandemics , COVID-19/epidemiology , Stress, Psychological/epidemiology , Fathers
2.
Scand J Occup Ther ; 30(7): 908-923, 2023 Oct.
Article in English | MEDLINE | ID: mdl-36368300

ABSTRACT

BACKGROUND: A survey showed European occupational scientists cover a broad range in occupational science (OS) research, however, no contemporary overviews of European OS research exists, and current research may provide valuable information for OS and occupational therapy. AIM: The aim was to provide an overview of contemporary European OS research. MATERIALS AND METHOD: A scoping review was performed, including studies conducted in Europe and published in the British Journal of Occupational Therapy (BJOT), the Scandinavian Journal of Occupational Therapy (SJOT) or the Journal of Occupational Science (JOS) between 2015 and 2020. The journals were systematically searched, and quality assessment and thematic analysis were undertaken. RESULTS: Findings from 93 articles identified many studies from the Nordic countries. Most studies applied qualitative research methods. Theoretical concepts from OS were used in data generating and discussions. A wide range of demographics, and living conditions were explored. Recent articles took a reflexive stance on the positionality of the researcher/s. CONCLUSIONS: This review highlights the diversity of OS research, suggesting a solid theoretical knowledge base within European OS research. SIGNIFICANCE: The results contribute to further development and maturation of the discipline of OS in Europe and internationally.


Subject(s)
Occupational Therapy , Humans , Europe , Nigeria , Occupational Therapy/methods , Scandinavian and Nordic Countries
3.
BMC Health Serv Res ; 22(1): 959, 2022 Jul 28.
Article in English | MEDLINE | ID: mdl-35902845

ABSTRACT

BACKGROUND: Reablement is a multi-professional and internationally established home-based health care service for mainly older people with the aim to reduce the need for long-term care and to promote self-determination. However, it is unknown which factors would facilitate the implementation of reablement in health care services. Therefore, the aim of this work was to identify relevant factors for the implementation process and to elucidate their importance based on the perspectives of experts. METHODS: Within an exploratory sequential mixed-methods design, a literature search followed by framework analysis was carried out using the five domains of the Consolidated Framework of Implementation Research (CFIR) to collect potentially relevant factors for implementation of reablement. A survey was then drawn up encompassing the factors identified. Within the survey international reablement - experts were asked to rate the relevance of these factors . RESULTS: The literature search identified 58 publications that served as sources for the framework analysis, where 40 potentially relevant factors were clustered into the five CFIR domains. These 40 factors were rated by experts in an online-survey. Based on the analysis of survey-data, 35 factors were considered as relevant for implementation of reablement services. The CFIR-domain characteristics of individuals, including teamwork and communication skills, was seen as most relevant. CONCLUSIONS: The implementation of reablement services is complex and requires the consideration of numerous factors, especially regarding the CFIR-domain characteristics of individuals. From the perspective of the survey´s participants one important factor of a successful implementation was the engagement of the persons involved. It requires team members with a strong, shared vision. Communication skills are highly important to promote teamwork and intensive training is needed to establish these skills. Further research on the implementation of reablement services is essential to realize its full potential.


Subject(s)
Home Care Services , Independent Living , Activities of Daily Living , Aged , Humans
4.
J Occup Environ Med ; 64(8): 694-698, 2022 08 01.
Article in English | MEDLINE | ID: mdl-35732038

ABSTRACT

OBJECTIVE: The aim of this study was to investigate the relationship among daily activities (paid work, childcare, caregiving, voluntary work, sports, and social contact), occupational balance, and depressive symptoms during the COVID-19 pandemic. METHODS: We analyzed data from the Austrian Corona Panel Project (four time points, 6-month period) using regression models with logarithmically transformed data and nonparametric repeated-measures tests (N = 871). RESULTS: Results showed higher depressive symptoms among women. Family caregivers (either parents or those caring for other relatives) were at the highest risk for occupational imbalance and depressive symptoms. Sports and social contact were initially associated with better outcomes, but the effects waned. There was a main effect for time point driven by the last wave (amidst the second lockdown), but no significant interaction effects between predictors and time point were found. CONCLUSION: The results provide a nuanced depiction of the relationship between different daily activities and health-related outcomes during the pandemic, highlighting groups at risk.


Subject(s)
COVID-19 , Austria/epidemiology , COVID-19/epidemiology , Communicable Disease Control , Depression/epidemiology , Female , Humans , Pandemics
5.
BMC Geriatr ; 22(1): 445, 2022 05 21.
Article in English | MEDLINE | ID: mdl-35596125

ABSTRACT

OBJECTIVES: Population ageing leads to a noticeable increase in demand for informal care. Informal caregivers experience high caregiver burden, such as restricted subjective health and well-being. Occupational balance is associated with subjective health and well-being. However, associations between occupational balance and subjective health and well-being of informal caregivers of older persons have not been investigated yet. Thus, the objective of this study was to explore associations between occupational balance and subjective health and well-being of informal caregivers of older persons. METHODS: From September 2016 to July 2020, a cross-sectional multicenter study design was employed in Austria. Informal caregivers' occupational balance, subjective health, and well-being as well as comorbidity of persons to be cared for were assessed with seven self-reported questionnaires. Spearman's rank correlation coefficients rs were calculated to determine associations between occupational balance and subjective health and well-being of informal caregivers of older persons. RESULTS: In total 118 informal caregivers, 102 (86%) female, and their persons to be cared for, 70 (59%) female, were considered for analyses. Median age was 58 years for informal caregivers and 81 years for persons to be cared for. Informal caregivers reported restrictions in occupational balance, subjective health, and well-being. Persons to be cared for showed comorbid health conditions. Significant associations between occupational balance and determinants of subjective health and well-being were identified (rs - 0.30 - 0.69; p ≤ 0.01). CONCLUSIONS: As population ageing and the demand for informal care progress, efforts to support informal caregivers and to strengthen their occupational balance, subjective health and well-being are vital.


Subject(s)
Caregivers , Diagnostic Self Evaluation , Aged , Aged, 80 and over , Aging , Cross-Sectional Studies , Female , Humans , Male , Surveys and Questionnaires
6.
BMC Health Serv Res ; 22(1): 372, 2022 Mar 21.
Article in English | MEDLINE | ID: mdl-35313879

ABSTRACT

BACKGROUND: Research on the optimal period for administering health services, especially rehabilitation interventions, is scarce. The aims of this study were to explore the construct of patients' convenient therapy periods and to identify indicators based on the perspectives of patients and different health professionals from inpatient neurological rehabilitation clinics. METHODS: This study was part of a larger project on patients' convenient therapy periods following a mixed methods approach. In the current study a grounded theory approach was employed based on the use of focus group interviews. Focus group interviews were conducted in three different inpatient neurological rehabilitation clinics. Patients and therapists from inpatient neurological rehabilitation clinics who were able to speak and to participate in conversations were included. RESULTS: A total of 41 persons, including 23 patients and 18 therapists, such as music and occupational therapists, participated in a total of six focus group interviews. The analysis of the focus group interviews resulted in the identification of a total of 1261 codes, which could be summarised in fifteen categories. However, these categories could be divided into five indicators and ten impact factors of convenient therapy periods. Identified indicators were verbal and non-verbal communication, mental functions, physiological needs, recreational needs, and therapy initiation. CONCLUSIONS: The results provide initial evidence that convenient therapy periods are clinically relevant for patients and therapists. Different states of patients' ability to effectively participate in a rehabilitation intervention exist. A systematic consideration of patients' convenient therapy periods could contribute to a personalised and more efficient delivery of intervention in neurological rehabilitation. To our knowledge, this study is one of the first attempts to research convenient therapy periods.


Subject(s)
Inpatients , Neurological Rehabilitation , Allied Health Personnel , Focus Groups , Humans
7.
Front Pediatr ; 10: 816221, 2022.
Article in English | MEDLINE | ID: mdl-35299673

ABSTRACT

Objective: Very low birthweight (VLBW) infants have an increased risk of mortality and frequently suffer from complications, which affects parental occupational balance. Occupational balance is the satisfaction with one's meaningful activities, which include everyday activities that people need to, want to, and are expected to do. In contrast to work-life balance, the construct of occupational balance addresses different activities equally and it applies to all persons, regardless of whether they are working or not. Parental occupational balance might be related to parents' and VLBW infants' health. Therefore, the objective of this study was to investigate associations between parental occupational balance, subjective health, and clinical characteristics of VLBW infants. Methods: A cross-sectional multicenter study was conducted in six Austrian neonatal intensive care units. Occupational balance and subjective health of parents of VLBW infants were assessed with six self-reported questionnaires. The following clinical characteristics of VLBW infants were extracted from medical records: gestational age, birthweight, Apgar scores, Clinical Risk for Babies II Score, and complications of prematurity. Spearman's rank coefficients were calculated. Results: In total, 270 parents, 168 (62%) female and their VLBW infants, 120 (44%) female, were included in this study. Parents' mean age was 33.7 (±6.0) years, mean gestational age of VLBW infants was 27 + 3 (±2) weeks. Associations between parental occupational balance, subjective health, and clinical characteristics of VLBW infants were identified (r s = 0.13 - 0.56; p ≤ 0.05), such as the correlation between occupational areas (r s = 0.22, p ≤ 0.01), occupational characteristics (r s = 0.17, p = 0.01), and occupational resilience (r s = 0.18, p ≤ 0.01) with bronchopulmonary dysplasia of VLBW infants. Conclusion: Occupational balance is associated with parents' and VLBW infants' health. Interventions to strengthen parental occupational balance might increase parental health and thereby also improve health and developmental outcomes of their VLBW infants.

8.
Scand J Occup Ther ; 29(5): 380-394, 2022 Jul.
Article in English | MEDLINE | ID: mdl-33161804

ABSTRACT

BACKGROUND: Occupational balance is a key concept in occupational science and occupational therapy. However, it is not well operationalized and instruments to evaluate occupational balance are scarce. AIM: To translate and validate a Danish version of the 10-item Occupational Balance Questionnaire (OB-Quest). MATERIAL AND METHODS: Translation was conducted using the dual-panel approach. Thereafter, data from 262 healthy Danish students were analyzed regarding fit to the Rasch model. RESULTS: The translation of the questionnaire to Danish required only minor cultural adaptations. Ninety percent of the participants were female. The mean age (±SD) was 26.10 (7.05) years. The reliability (person separation index) was questionable (0.63), and the scale showed multidimensionality. Two items (1 and 9) showed misfit to the Rasch model. Differential item function by gender was detected in one item (item 4). After deleting items 1 and 9 and splitting item 4 into two gender-specific items, the new 9-item scale showed good overall and individual item fit. However, reliability remained low (0.59) and some elements of the latent variable (occupational balance) were not sufficiently represented. CONCLUSIONS AND SIGNIFICANCE: Further development and testing of the Danish OB-Quest is needed before implementation in clinical practice or research involving healthy subjects.


Subject(s)
Translations , Adult , Denmark , Female , Humans , Male , Psychometrics , Reproducibility of Results , Surveys and Questionnaires
9.
PLoS One ; 16(12): e0261815, 2021.
Article in English | MEDLINE | ID: mdl-34941966

ABSTRACT

OBJECTIVES: Informal caregivers often experience a restriction in occupational balance. The self-reported questionnaire on Occupational Balance in Informal Caregivers (OBI-Care) is a measurement instrument to assess occupational balance in informal caregivers. Measurement properties of the German version of the OBI-Care had previously been assessed in parents of preterm infants exclusively. Thus, the aim of this study was to examine the measurement properties of the questionnaire in a mixed population of informal caregivers. METHODS: A psychometric study was conducted, applying a multicenter cross-sectional design. Measurement properties (construct validity, internal consistency, and interpretability) of each subscale of the German version of the OBI-Care were examined. Construct validity was explored by assessing dimensionality, item fit and overall fit to the Rasch model, and threshold ordering. Internal consistency was examined with inter-item correlations, item-total correlations, Cronbach's alpha, and person separation index. Interpretability was assessed by inspecting floor and ceiling effects. RESULTS: A total of 196 informal caregivers, 171 (87.2%) female and 25 (12.8%) male participated in this study. Mean age of participants was 52.27 (±12.6) years. Subscale 1 was multidimensional, subscale 2 and subscale 3 were unidimensional. All items demonstrated item fit and overall fit to the Rasch model and displayed ordered thresholds. Cronbach's Alpha and person separation index values were excellent for each subscale. There was no evidence of ceiling or floor effects. CONCLUSIONS: We identified satisfying construct validity, internal consistency, and interpretability. Thus, the findings of this study support the application of the German version of the OBI-Care to assess occupational balance in informal caregivers.


Subject(s)
Caregivers/psychology , Psychometrics , Self Report , Adult , Aged , Cross-Sectional Studies , Female , Humans , Male , Middle Aged
10.
PLoS One ; 16(11): e0259648, 2021.
Article in English | MEDLINE | ID: mdl-34780508

ABSTRACT

BACKGROUND: Parents' meaningful activities (occupations) and occupational balance are relevant to neonatal care. Valid and reliable self-reported measurement instruments are needed to assess parents' occupational balance and to evaluate occupational balance interventions in neonatal care. The aims of this study were to develop a self-reported questionnaire on occupational balance in informal caregivers (OBI-Care) and to examine its measurement properties including construct validity and internal consistency. METHODS AND FINDINGS: A mixed method multicenter study design was employed. Items of the OBI-Care were created with parents of preterm infants based on qualitative research methods. Measurement properties were analyzed with quantitative data of parents of preterm infants. Construct validity was assessed by determining dimensionality, overall and item fit to a Rasch model, differential item functioning and threshold ordering. Internal consistency was examined by determining inter-item and item-total correlations, Cronbach's alpha and Rasch's person separation index. Fourteen parents participated in item creation. Measurement properties were explored in data of 304 parents. Twenty-two items, summarized in three subscales were compiled to the OBI-Care. Items showed an overall fit and except one item, an item fit to the Rasch model. There was no evidence of differential item functioning and all items displayed ordered thresholds. Each subscale had good values of person separation indices and Cronbach's alpha. CONCLUSIONS: The OBI-Care demonstrates construct validity and internal consistency and is thus a suitable measurement instrument to assess occupational balance of parents of preterm infants in neonatal care. OBI-Care is generic and can be applied in various health care settings.


Subject(s)
Surveys and Questionnaires , Adult , Caregivers/statistics & numerical data , Female , Humans , Infant, Premature , Male , Middle Aged , Research Design , Self Report
11.
Hong Kong J Occup Ther ; 33(2): 33-41, 2020 Dec.
Article in English | MEDLINE | ID: mdl-33815022

ABSTRACT

BACKGROUND: Occupational balance, a fundamental concept in occupational therapy, is the arrangement of right amount and variety of occupations contributes to a person's health and well-being. This study was aimed to investigate the reliability and validity of the Chinese version of the Occupational Balance Questionnaire (OB-Quest) for people with insomnia. METHODS: The OB-Quest was translated into traditional Chinese and reviewed by an expert panel for content validity, cultural relevance and translation accuracy. Internal consistency, factor analysis and convergent validity, as well as test-retest reliability, were explored. RESULTS: The participants (n = 205), 115 adults with insomnia and 90 adults without insomnia, completed a survey of demographic background, the Chinese version of OB-Quest and the Chinese Insomnia Severity Index (C-ISI). The Chinese version of OB-Quest demonstrated excellent test-retest reliability (ICC= 0.98) and good internal consistency (Cronbach's α = 0.80). Factor analysis indicated that a single-factor solution explained 42% of the variance, and 9 out of 10 items had a factor loading of 0.4 or above. The Chinese version of OB-Quest had significant correlations with C-ISI (r = -0.88; p < 0.001). A significant difference was found in occupational balance between groups with different levels of insomnia severity and without insomnia (F = 169.72; p < 0.001). As in a previous study, age, living environment and life role had no significant relationship with occupational balance. CONCLUSION: The Chinese version of OB-Quest is a short, easy to understand and culturally relevant assessment for Chinese. It demonstrates satisfactory psychometric properties and had significant correlations with insomnia.

12.
PLoS One ; 13(8): e0202189, 2018.
Article in English | MEDLINE | ID: mdl-30153266

ABSTRACT

INTRODUCTION: Parents have a major impact on the outcome of health care of preterm infants. Parents' engagement in meaningful activities could have an impact on their own health and wellbeing and therefore be relevant in neonatal intensive care. The aim of this study was to explore meaningful activities of parents of very low birth weight (VLBW) preterm infants with the purpose to further the understanding of their clinical relevance and to foster their consideration in clinical practice and research of neonatal intensive care. METHODS: A total of 36 parents of preterm infants born prior to complete 37 weeks of gestation with VLBW (≤1.500 grams) were asked to participate in a focus group interview. Interview transcripts were used to analyse the content of the focus group interviews using meaning condensation method by Steinar Kvale. RESULTS: Thirty-six parents participated in a total of twelve focus groups. Parents reported that the meaning of certain activities changed due to preterm birth. Meaningful activities, like bathing the baby and gardening, could foster a transition from a feeling of parental immaturity to a feeling of maturity, following health care instructions to possessing health care skills, and a functioning-only state to a balance of activities. CONCLUSIONS: In neonatal intensive care, nurses contribute to delivering parental education and thereby facilitate experiences of being a mature parent and of possessing health care skills. Occupational therapy could be used to help re-engage in meaningful activities and maintain a balance of activities in parents of VLBW preterm infants.


Subject(s)
Behavior , Infant, Premature , Infant, Very Low Birth Weight , Parents/psychology , Adult , Education, Nonprofessional , Female , Focus Groups , Humans , Infant , Intensive Care, Neonatal , Interviews as Topic , Male , Parenting/psychology , Qualitative Research , Time Factors
13.
PLoS One ; 12(2): e0172056, 2017.
Article in English | MEDLINE | ID: mdl-28182787

ABSTRACT

OBJECTIVES: In Primary Sjögren's Syndrome (PSS), there is an apparent lack of data concerning the perspectives of patients, their needs, preferences and difficulties of daily life. This qualitative study was conducted to explore perspectives and needs of patients with PSS that influence health related quality of life (HRQL). METHODS: We recruited 20 PSS patients fulfilling the American-European consensus classification criteria out of the PSS cohort of the Medical University Graz, Austria. In total, 6 focus group sessions (with three to four patients per group) were performed. A modified meaning condensation procedure was used to analyse the data. RESULTS: The interview analysis resulted in 484 meaning units, 254 subconcepts and 86 concepts. The identified concepts were grouped into three dimensions: physical dimension, psychological & emotional challenges and social life & daily living. A dependency between the three categories was identified. The concepts most commonly reported by patients were related to the physical dimension: pain and dryness as well as complaints associated with/provoked by these symptoms. Patients also reported shortness of breath, fatigue und constipation. CONCLUSIONS: This qualitative study underpins that HRQL in PSS patients is affected by several factors. The problems are not limited to dryness, pain and fatigue while the complaints secondary to these symptoms are important to patients with PSS significantly affecting physical, psychological and social life components of HRQL. A disease-specific patient related outcome measures for clinical practice and trials should be developed considering the different aspects of HRQL in PSS.


Subject(s)
Fatigue/epidemiology , Patients/psychology , Quality of Life , Sjogren's Syndrome/epidemiology , Aged , Attitude , Female , Focus Groups , Humans , Male , Middle Aged , Sjogren's Syndrome/complications , Sjogren's Syndrome/psychology
14.
Psychoneuroendocrinology ; 65: 138-48, 2016 Mar.
Article in English | MEDLINE | ID: mdl-26773841

ABSTRACT

Growing evidence shows interrelations of psychological factors, neurological and immunological processes. Therefore, constructs like a balance of activities, the so called "occupational balance", could also have biological correlates. The aim of this study was to investigate potential associations between occupational balance, functioning, cytokines and C-reactive protein (CRP) in patients suffering from a chronic inflammatory disease like rheumatoid arthritis (RA) and healthy people. Moreover, we wanted to explore potential differences in gender and employment status. A descriptive study in patients with RA and healthy people was conducted using the Occupational Balance-Questionnaire (OB-Quest) and the Short-Form 36 Health Survey (SF-36). Serum levels of cytokines, such as interleukin 6 (IL-6) and 8 (IL-8), interferon alpha (INFα), tumour necrosis factor alpha (TNFα), rheumatoid factor (RF) and of CRP were measured. Descriptive statistics, as well as Mann-Whitney U tests and Spearmen's rank correlation coefficients (rs) were calculated. One-hundred-thirty-two patients with RA and 76 healthy people participated. Occupational balance was associated with functioning, cytokines and CRP. The strongest associations were identified in the unemployed healthy-people sample with cytokines and CRP being within the normal range. For example, the OB-Quest item challenging activities was associated with IL-8 (rs=-0.63, p=0.04) and the SF-36 sub-scale bodily pain was associated with IFNα (rs=-0.69, p=0.02). The items rest and sleep (rs=-0.71, p=0.01) and variety of different activities (rs=-0.74, p<0.01) correlated with the SF-36 sub-scale social functioning. Employed and unemployed people differed in their age and CRP levels. Additionally, gender differences were found in two OB-Quest items in that fewer women were able to adapt their activities to changing living conditions and fewer men were overstressed. In conclusion, we found preliminary biological evidence for the link between occupation and health in that the concepts encompassed in the construct of occupational balance were associated with functioning, cytokines and CRP.


Subject(s)
Activities of Daily Living , C-Reactive Protein/metabolism , Cytokines/blood , Adult , Aged , Arthritis, Rheumatoid/blood , Arthritis, Rheumatoid/psychology , Biomarkers/blood , Case-Control Studies , Employment , Female , Health Status , Humans , Male , Middle Aged
15.
Health Qual Life Outcomes ; 13: 27, 2015 Feb 25.
Article in English | MEDLINE | ID: mdl-25879438

ABSTRACT

BACKGROUND: Personal factors (PFs) are internal factors that determine functioning and the individuals' experience of disability. Their coverage by patient-reported outcome measures (PROMs) has not been examined in rheumatoid arthritis (RA) so far. The aims of this study were to identify PFs important in the life stories of people with RA and to determine their coverage by PROMs used in RA. METHODS: The qualitative data of people with RA was explored to identify PFs. Additionally a systematic literature search was conducted to find PROMs used in RA. PROMs items were linked to the components, domains and categories of the International Classification of Functioning, Disability and Health (ICF) to determine the coverage of important PFs by PROMs. RESULTS: Twelve PFs were found to be important in the life stories of people with RA. The PFs coping and reflecting about one's life in an optimistic way were covered most frequently, each by 14 of the 42 explored PROMs, while job satisfaction was not covered at all. The London Coping with Rheumatoid Arthritis Questionnaire, General Self-Efficacy Scale, Arthritis Self-Efficacy Scale, Rheumatoid Arthritis Self-Efficacy Questionnaire and Revised Ways of Coping Inventory covered most PFs. Nineteen PROMs did not cover any of the PFs. CONCLUSION: Several PFs were identified as important in the life stories of people with RA, but only 55% of the PROMS covered some of these PFs. When evaluating PFs important to people with RA, health professionals should be alert on which PROMs can be used to assess which PFs.


Subject(s)
Arthritis, Rheumatoid/classification , Arthritis, Rheumatoid/psychology , Disabled Persons/psychology , Patient Outcome Assessment , Quality of Life/psychology , Adult , Female , Humans , International Classification of Diseases/standards , Middle Aged , Outcome Assessment, Health Care/methods , World Health Organization
16.
Health Qual Life Outcomes ; 12: 45, 2014 Apr 05.
Article in English | MEDLINE | ID: mdl-24708642

ABSTRACT

BACKGROUND: Self-reported outcome instruments in health research have become increasingly important over the last decades. Occupational therapy interventions often focus on occupational balance. However, instruments to measure occupational balance are scarce. The aim of the study was therefore to develop a generic self-reported outcome instrument to assess occupational balance based on the experiences of patients and healthy people including an examination of its psychometric properties. METHODS: We conducted a qualitative analysis of the life stories of 90 people with and without chronic autoimmune diseases to identify components of occupational balance. Based on these components, the Occupational Balance-Questionnaire (OB-Quest) was developed. Construct validity and internal consistency of the OB-Quest were examined in quantitative data. We used Rasch analyses to determine overall fit of the items to the Rasch model, person separation index and potential differential item functioning. Dimensionality testing was conducted by the use of t-tests and Cronbach's alpha. RESULTS: The following components emerged from the qualitative analyses: challenging and relaxing activities, activities with acknowledgement by the individual and by the sociocultural context, impact of health condition on activities, involvement in stressful activities and fewer stressing activities, rest and sleep, variety of activities, adaptation of activities according to changed living conditions and activities intended to care for oneself and for others. Based on these, the seven items of the questionnaire (OB-Quest) were developed. 251 people (132 with rheumatoid arthritis, 43 with systematic lupus erythematous and 76 healthy) filled in the OB-Quest. Dimensionality testing indicated multidimensionality of the questionnaire (t = 0.58, and 1.66 after item reduction, non-significant). The item on the component rest and sleep showed differential item functioning (health condition and age). Person separation index was 0.51. Cronbach's alpha changed from 0.38 to 0.57 after deleting two items. CONCLUSIONS: This questionnaire includes new items addressing components of occupational balance meaningful to patients and healthy people which have not been measured so far. The reduction of two items of the OB-Quest showed improved internal consistency. The multidimensionality of the questionnaire indicates the need for a summary of several components into subscales.


Subject(s)
Autoimmune Diseases/psychology , Employment/psychology , Adult , Arthritis, Rheumatoid/psychology , Diabetes Mellitus, Type 1/psychology , Employment/statistics & numerical data , Female , Humans , Lupus Erythematosus, Systemic/psychology , Male , Middle Aged , Qualitative Research , Relaxation/psychology , Reproducibility of Results , Scleroderma, Systemic/psychology , Surveys and Questionnaires , Treatment Outcome
17.
J Crohns Colitis ; 8(1): 45-55, 2014 Jan.
Article in English | MEDLINE | ID: mdl-23375212

ABSTRACT

BACKGROUND AND AIMS: Busy clinical settings often restrict the possibility to focus on concepts that determine health in a positive way, commonly assessed by using patient-reported outcomes (PROs). We aimed to explore which determinants of health (DHs) are important to people with Crohn's disease (CD), to understand possible gender differences and to analyze whether these DHs are covered by PROs used in CD. METHODS: Two systematic literature reviews were done to identify relevant DHs and clinically relevant PROs. We conducted a qualitative narrative biographical study and mapped the patients' experiences to concepts that determine health in a positive way. Experiences, DHs and the items of the PROs were compared by the WHO International Classification of Functioning, Disability and Health (ICF) as a common framework. RESULTS: 15 people with CD with a median age of 46 years (IQR 34-60) and median disease duration of 15 years (IQR 8-30) participated. Self-efficacy, social support, job satisfaction and occupational balance were mentioned most frequently. While participation appeared to have greater meaning to men, appreciation and resilience seemed to be more important for women. Of 18 PROs the Perceived Stress Questionnaire (PSQ), the Inflammatory Bowel disease - Self-efficacy scale (IBD-SES), the Life Orientation Test - Revised (LOT-R) and the Patient Activation Measure 13 (PAM-13) cover most DHs. CONCLUSIONS: This is the first study elaborating the coverage of patient's perspective by commonly used PROs in CD. The findings could support health professionals to focus on DHs in people with CD in clinical practice and research.


Subject(s)
Crohn Disease/psychology , Patient Outcome Assessment , Social Determinants of Health , Surveys and Questionnaires , Adult , Female , Humans , Job Satisfaction , Male , Middle Aged , Psychological Distance , Qualitative Research , Resilience, Psychological , Self Efficacy , Sex Factors , Social Support
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