Jolanda Tuinstra

Distress in couples coping with cancer: A meta-analysis and critical review of role and gender effects

Research concerning distress in couples coping with cancer was integrated using meta-analysis and narrative critical appraisal. Individual levels of distress were determined more by gender than by the role of being the person with cancer versus that persons partner. That is, women reported consistently more distress than men regardless of their role (standardized mean difference = 0.31). The association between patient and partner distress within couples was only moderate (r = .29) but is sufficient to warrant further consideration of the notion that these couples react as an emotional system rather than as individuals. It is noteworthy that this association is not moderated by gender. With a general lack of comparison groups, the question of how much distress can be ascribed to the cancer experience cannot be answered decisively; elevations in distress are probably modest. We critically discuss these results, identify important unanswered questions, and indicate directions for future research. Attention needs to be directed toward factors other than cancer as direct influences of distress in these couples and to mediators and moderators of the cancer experience.

Psychosocial factors associated with indices of cortisol production in women with breast cancer and controls

The present study was designed to (i) explore which psychosocial factors were associated with indices representing the early morning peak, diurnal cortisol rhythm and area under the curve (AUC); (ii) examine whether the relationships between psychosocial functioning and these cortisol indices were consistent and (iii) explore whether these relationships were influenced by the clinical status of the participant. Newly diagnosed breast cancer patients (n = 85) and healthy control women (n = 59) were recruited. State and trait measures of psychosocial functioning (i.e. anxiety, depression, distress, neuroticism, extraversion, marital satisfaction and mastery) were undertaken. In addition, all participants provided four saliva samples (on waking, 30 min later, between 11 and 1 p.m., before lunch and between 8 and 10 p.m., at least 2h after evening meal) over two consecutive days to assess cortisol levels. The results highlighted the divergent nature of the four cortisol indices; revealed the presence of some significant relationships between the psychosocial measures and the cortisol indices; but highlighted inconsistencies in the relationships evident for patients and those observed for control women.

A Taxonomy of Care for Youth: Results of an Empirical Development Procedure.

Purpose: Statements about potentially effective components of interventions in child and youth care are hard to make because of a lack of a standardized instruments for classifying the most salient care characteristics. The aim of this study is to present an empirically developed taxonomy of care for youth (Tocfy) which is feasible for use in daily practice, including an explanation of the developmental process itself. Methods: The development procedure, comprising of different stages, contributed significantly to the foundation of the taxonomy. Results: The operational version consists of six domains: (1) contents of the intervention; (2) judicial context; (3) duration of the intervention; (4) intensity of the intervention; (5) intervention recipients; and (6) expertise of professionals. The terminologies used to describe treatment programs and the levels of classification were standardized for each organization participating in our study. By doing so, the feasibility and manageability of the taxonomic system in daily practice increased. Discussion: Using tocfy in daily practice provides the opportunity to gather information on care and treatment characteristics within care organizations. The strength of tocfy is that its framework can be extended to other care organizations within child and youth care. Replication of the findings of our study in other child and youth care settings is needed, because this study only covered one province in the Netherlands.

Fatigue in patients with Juvenile Idiopathic Arthritis: relationship to perceived health, physical health, self-efficacy, and participation

BackgroundFatigue is common in patients with JIA and affects daily life negatively. We assessed the presence and severity of fatigue in patients with JIA, including factors presumed associated with fatigue (e.g., disease activity, disability, pain, physical activity, exercise capacity, and self-efficacy), and whether fatigue is related to participation in physical education classes, school attendance, and sports frequency.MethodsThe current study used baseline data of 80 patients with JIA (age 8–13) who participated in an intervention aimed at promoting physical activity. Primary outcome measurements were fatigue, assessed using the Pediatric-Quality-of-Life-Inventory (PedsQl)-Fatigue-scale and energy level assessed using a VAS scale. Other outcome measurements were disease activity (VAS Physician Global Assessment Scale), disability (Childhood Health Assessment Questionnaire), physical activity (accelerometer), exercise capacity (Bruce treadmill test), self-efficacy (Childhood Arthritis Self-Efficacy Scale), and participation (self-report).ResultsSixty percent of patients with JIA suffered from daily low-energy levels; 27% suffered from very low-energy levels more than half the week. Low energy levels were best predicted by disability and low physical activity. Fatigue measured with the PEDsQL was higher compared to the control-population. Disability and low self-efficacy were main predictors of fatigue. Self-efficacy was a predictor of fatigue but did not act as moderator. Fatigue was a predictor for sports frequency but not for school attendance.ConclusionFatigue is a significant problem for JIA patients. Interventions aimed at reducing perceived disability, stimulating physical activity, and enhancing self-efficacy might reduce fatigue and thereby enhance participation.Trial registrationTrial number ISRCTN92733069

De invloed van Dementia Care Mapping (DCM) op moeilijk hanteerbaar gedrag van mensen met dementie en de arbeidstevredenheid van verzorgenden: een pilotstudie

SamenvattingDe prevalentie van probleemgedrag bij verpleeghuisbewoners met dementie is hoog. Uit de praktijk blijkt dat probleemgedrag afneemt naarmate het zorgteam beter in staat is de individuele psychosociale behoeften van patiënten te herkennen en daarop in te spelen. Dementia Care Mapping (DCM) is ontwikkeld om zorgteams te ondersteunen in het geven van belevingsgerichte zorg. In een One-Group Pretest-Posttest design is geëvalueerd of er na implementatie van twee DCM-cycli veranderingen optreden in het gedrag en de mate van agitatie van cliënten met dementie, en in de arbeidstevredenheid van degenen die hen verzorgen. Het gedrag van cliënten met dementie werd gemeten met de GIP-28 (Gedragsobservatieschaal voor de Intramurale Psychogeriatrie) en de mate van agitatie met de CMAI (Cohen Mansfield Agitation Inventory). De arbeidstevredenheid van verzorgenden werd gemeten met de MAS-GZ (Maastrichtse Arbeidssatisfactie Schaal voor de GezondheidsZorg). Gerapporteerd wordt over de gegevens van 45 cliënten met dementie en 27 verzorgenden. Zij verbleven en werkten op zeven verschillende afdelingen van een Friese zorginstelling, waaronder dagbehandeling voor mensen die nog thuis wonen, groepsverzorging en zorg in een kleinschalige woonvorm.De resultaten van de pilotstudie wijzen op een afname van de affectieve problematiek (subschaal GIP-28: gevoelens van angst, achterdocht en somberheid) en op een afname van de verbale agitatie (subschaal CMAI: buitensporig aandacht vragen, klagen en negativisme) in de groep cliënten met dementie. Op de overige subschalen en in de totaalscores van de GIP-28 en CMAI treden geen veranderingen op. In de algehele arbeidstevredenheid van verzorgenden treedt ook geen verandering op. Alleen over het contact met de cliënten zijn de verzorgenden na introductie van DCM meer tevreden. Implementatie van DCM in de zorg voor mensen met dementie heeft enkele positieve gevolgen voor zowel cliënten als verzorgenden. Grootschaliger onderzoek met controlegroepen wordt aanbevolen, waarin tevens gecontroleerd wordt voor de aard en ernst van de dementie.The influence of Dementia Care Mapping (DCM) on behavioural problems of persons with dementia and the job satisfaction of caregivers: a pilot studyThe prevalence of behavioural problems in nursing home residents with dementia is high. Knowledge based on practical experiences suggests that problems diminish when caregivers are better able to recognize and acknowledge the individual psychosocial needs of residents. Dementia Care Mapping (DCM) is a method designed to support caregivers in providing person centered care.After implementing two DCM-cycli in a Dutch care facility changes in behaviour and level of agitation of clients with dementia and changes in job satisfaction of caregivers were evaluated in a One-Group Pretest-Posttest design. The GIP-28 (Dutch Behavioral Rating Scale for Psychogeriatric Inpatients) and the CMAI (Cohen Mansfield Agitation Inventory) were used to measure potential changes in behaviour and level of agitation of the clients. The MAS-GZ (Maastricht Scale of Satisfaction with Labour in Health Care) was used to measure potential changes in job satisfaction of caregivers. The data of 45 clients with dementia and 27 caregivers were analyzed. They stayed and worked in seven different wards of the care facility including day-care for clients who were still living at home, group care and smallscale- living care for residential clients.The results of this pilot study show that problems related to affective behaviour (subscale GIP-28: emotions of anxiety, mistrust and melancholy) as well as verbal agitation (subscale CMAI: excessively asking for attention, complaining and negativism) decreased in the group clients with dementia. No changes occurred in the other subscales and in the total score of the GIP-28 and CMAI. The overall job satisfaction of caregivers did not change, but their contentment with the extent to which they feel connected with clients improved.In conclusion, the results of this pilot study indicate that implementing DCM in care facilities for persons with dementia could have some positive consequences for both clients and caregivers. A large-scale controlled trial including diagnosis and stage of dementia as baseline measures, is recommended.

Fatigue in patients with juvenile idiopathic arthritis: A systematic review of the literature

OBJECTIVE To perform a systematic review of the current literature on studies related to fatigue in children with JIA. We studied the measurements that were used to assess fatigue and we focused on three outcome measurements, namely, (1) the prevalence of fatigue in JIA patients, (2) the determinants of and associations with fatigue in JIA patients, and (3) the impact of fatigue in JIA patients on daily life. METHODS A search was conducted in the electronic databases Pubmed and Embase from January 1, 2000 until August 27, 2015. The quality in prognostic factors (QUIPS) tool was used to assess the risk of bias (ROB) in the selected studies, focused on the outcome fatigue. Of all, two authors independently judged the ROB. RESULTS A total of 15 studies were included in this review. To assess fatigue, two unidimensional and three multidimensional scales were used, which hampered comparison. Fatigue was reported to be present in 60-76% of the patients with JIA and was related to time of day, disease activity, pain, psychosocial factors, and sleep. Minor consequences for daily life were found, though this was not studied extensively. CONCLUSION Fatigue is common in patients with JIA. The cause reflects a complex interplay of different factors. Based on results from this review and its body of knowledge, a conceptual model for fatigue in patients with JIA is proposed. Consensus is needed for future studies on how to assess fatigue. We promote the use of a combination of unidimensional and validated multidimensional measurements.

Opening the black box: Toward classifying care and treatment for children and adolescents with behavioral and emotional problems within and across care organizations

Objective: The Taxonomy of Care for Youth was developed to gather information about the care offered to children and adolescents with behavioral and emotional problems in various care settings. The aim was to determine similarities and differences in the content of care and thereby to classify the care offered to these children and youth within and across care organizations. Method: Interventions (N = 56) offered in primary health care, child and youth care, and mental health care were assessed by using descriptors. Professionals scored the degree of applicability of these descriptors and interventions with similar descriptors were merged. Results: As a result, the interventions could be classified into 7 main types of support and the total number of interventions reduced to 27. Conclusion: The descriptors used in this study were able to classify the various kinds of care offered based on their content, thereby creating an overview of distinct interventions.

Looking into care: The reliability and feasibility of a Taxonomy of Care for Youth

Summary Classifying the care provided to children with emotional and behavioural problems can provide empirical insights into the relationship between child characteristics, the care offered and outcomes after leaving care. The Taxonomy of Care for Youth (TOCFY) has recently been shown to validly classify this care in six domains covering all aspects of care. The aim of this study was to assess the inter-rater reliability and feasibility of TOCFY. Two raters independently classified the care provided to 200 children (50 per organisation) from organisations in primary health care, child and youth care, and mental health care (two organisations), based on their care records. We assessed inter-rater reliability and the degree to which TOCFY categories could be applied anyhow, that is its feasibility. Findings Mean agreement was 89.8% between raters; excluding the cases scored as ‘unknown’, the mean agreement was 82.2%. TOCFY-categories could be applied for over 90% regarding each of the six domains. Applications TOCFY is a valid, reliable and feasible instrument to classify care within different types of care organisations. Give these promising findings, application and further evaluation of TOCFY is recommended.

Differences in care provided to children with behavioral and emotional problems in a delineated region by using the Taxonomy of Care for Youth (TOCFY)

ABSTRACT Behavioral and emotional problems can lead to severe restrictions in the functioning of children and to an impaired development. The types of support for children vary greatly between care providers. The aim of this study is to apply the Taxonomy of Care for Youth (TOCFY) and to make an inventory of the core elements and program elements of the various types of support for children with behavioral and emotional problems that were offered overall and per main types of providers in a delineated region. We assessed the types of support to children (N = 621) by applying TOCFY. The study showed that by using Tocfy we could make an inventory of the various types of support offered. ‘Individual child support’ and ‘family support’ were provided most often, and therefore, most interventions were aimed at the child or at the child and his/her parents/caretakers. Support was mostly provided without judicial interference and within an ambulatory/outpatient or home-based setting. TOCFY could be helpful by mapping of information on the support offered to children across various types of care providers. More information on the core and program elements of these types of support may help to optimize care for children and their families.

Mantelzorg en Mindfulness

SamenvattingUit verschillend onderzoek blijkt dat mindfulness een waardevolle interventie kan zijn om de stress te verminderen die de zorg van een naaste met zich meebrengt. Behalve tot stressreductie kan mindfulness ook tot een hogere kwaliteit van leven leiden en tot het gevoel meer grip op het leven te hebben. Maar blijven dergelijke uitkomsten ook na de gevolgde mindfulnesstraining bestaan of doven ze uit en zijn ze slechts van korte duur? Dat is een van de centrale vragen van het onderzoek onder mantelzorgers dat is uitgevoerd door de Wetenschapswinkel Geneeskunde en Volksgezondheid van het Universitair Medisch Centrum Groningen (UMCG).AbstractInformal care and mindfulness: outcomes of a Mindfulness-Based Stress Reduction training on quality of life of burdened informal caregiversA number of studies has shown that mindfulness can be regarded as a valuable intervention to reduce stress associated with an informal caregiver’s burden of caring for a relative. Besides its potential to reduce stress mindfulness is also believed to enhance quality of life and to stimulate a sense of caregiver competence. The present study among 62 informal caregivers shows that the training Mindfulness-Based Stress Reduction (MBSR) -2,5 hours during eight weeks, with additional 45 minutes’ homework exercises during six days a week- leads to an enhanced quality of life and sense of competence, as well as a reduced experienced care burden. This positive effect on quality of life seems to have a durable character, since three months after the end of the training 90% of the informal caregivers still report a significant higher quality of life and is still practising their daily exercises. Keywords: informal care, mindfulness training, quality of life, sense of competence, care burden