Nele Spruytte

The quality of the caregiving relationship in informal care for older adults with dementia and chronic psychiatric patients.

The present study focuses on the dyadic relationship between a family carer and a patient. Besides clarifying the quality of the caregiving relationship in two populations of chronically ill patients, this investigation examines whether patient characteristics, carer characteristics and network characteristics are predictive of relationship quality in dementia caregiving. Partners, children or children-in-law caring for a relative suffering from dementia (N = 144) and partners or parents of persons suffering from chronic mental illness (N = 77) were interviewed with a semi-structured questionnaire. The measurement of relationship quality is based on the literature of Expressed Emotion and covers two dimensions: the level of criticism and the level of warmth. In general, the relationship between a carer and his or her chronically ill relative was marked by a low level of conflict or criticism and a high degree of warmth. The main predictors of a poorer relationship quality were disturbances in the patients behaviour and the carers perception of these disturbances. Our results suggest that, rather than limiting investigations to the burden experienced by the family carer, future research and interventions on chronically ill patients should focus on the quality of the carer-patient relationship and its determinants.

The determinants of informal caregivers' burden in the care of frail older persons: a dynamic and role-related perspective

ABSTRACT Research into informal caregivers’ burden does not distinguish between different stages of impairment. This study explored the determinants of burden from an in-depth perspective in order to identify which determinants apply to which phases of impairment. Methods: This was a cross-sectional study including frail older persons aged 65 and above. Instruments used were the interRAI Home Care, the Zarit-12 interview and an ad hoc economic questionnaire. A combination of variables from the Stress Process Model and Role Theory and a sub-group analysis enabled refined multivariate logistic analyses. Results: The study population consisted of 4175 older persons (average age: 81.4 ± 6.8, 67.8% female) and their informal caregivers. About 57% of them perceived burden. Depressive symptoms, behavioral problems, IADL impairment, previous admissions to nursing homes and risk of falls yielded significant odds ratios in relation to informal caregivers’ burden for the whole sample. These determinants were taken from the Stress Process Model. When the population was stratified according to impairment, some factors were only significant for the population with severe impairment (behavioral problems OR:2.50; previous admissions to nursing homes OR:2.02) and not for the population with mild or moderate impairment. The informal caregiver being an adult child, which is a determinant from Role Theory, and cohabitation showed significant associations with burden in all strata. Conclusion: Determinants of informal caregivers’ burden varied according to stages of impairment. The results of this study can help professional caregivers gain a greater insight into which informal caregivers are most susceptible to perceive burden. Abbreviations: NIHDI: National Institute for Health and Disability Insurance; ZBI12: Zarit Burden Interview - 12 items; InterRAI HC: interRAI Home Care instrument; ADL: Activities of Daily Living; ADLH: interRAI Activities of Daily Living Hierarchy scale; IADL: Instrumental Activities of Daily Living; IADLP: InterRAI Instrumental Activities of Daily Living Performance scale; CPS2: InterRAI Cognitive Performance scale 2; DRS: InterRAI Depression Rating scale

A Comparative Analysis of Comprehensive Geriatric Assessments for Nursing Home Residents Receiving Palliative Care: A Systematic Review

BACKGROUND/OBJECTIVES Nursing homes become important locations for palliative care. By means of comprehensive geriatric assessments (CGAs), an evaluation can be made of the different palliative care needs of nursing home residents. This review aims to identify all CGAs that can be used to assess palliative care needs in long-term care settings and that have been validated for nursing home residents receiving palliative care. The CGAs are evaluated in terms of psychometric properties and content comprehensiveness. DESIGN A systematic literature search in electronic databases MEDLINE, Web of Science, EMBASE, Cochrane, CINAHL, and PsycInfo was conducted for the years 1990 to 2012. SETTING Nursing homes. PARTICIPANTS Nursing home residents with palliative care needs. MEASUREMENTS Psychometric data on validity and reliability were extracted from the articles. The content comprehensiveness of the identified CGAs was analyzed, using the 13 domains for a palliative approach in residential aged care of the Australian Government Department of Health and Aging. RESULTS A total of 1368 articles were identified. Seven studies met our inclusion criteria, describing 5 different CGAs that have been validated for nursing home residents with palliative care needs. All CGAs demonstrate moderate to high psychometric properties. The interRAI Palliative Care instrument (interRAI PC) covers all domains for a palliative approach in residential aged care of the Australian Government Department of Health and Aging. The McMaster Quality of Life Scale covers nine domains. All other CGAs cover seven domains or fewer. CONCLUSIONS The interRAI PC and the McMaster Quality of Life Scale are considered to be the most comprehensive CGAs to evaluate the needs and preferences of nursing home residents receiving palliative care. Future research should aim to examine the effectiveness of the identified CGAs and to further validate the CGAs for nursing home residents with palliative care needs.

Informed palliative care in nursing homes through the interRAI Palliative Care instrument: a study protocol based on the Medical Research Council framework

BackgroundNursing homes are important locations for palliative care. Through comprehensive geriatric assessments (CGAs), evaluations can be made of palliative care needs of nursing home residents. The interRAI Palliative Care instrument (interRAI PC) is a CGA that evaluates diverse palliative care needs of adults in all healthcare settings. The evaluation results in Client Assessment Protocols (CAPs: indications of problems that need addressing) and Scales (e.g. Palliative Index for Mortality (PIM)) which can be used to design, evaluate and adjust care plans. This study aims to examine the effect of using the interRAI PC on the quality of palliative care in nursing homes. Additionally, it aims to evaluate the feasibility and validity of the interRAI PC.MethodsThis study covers phases 0, I and II of the Medical Research Council (MRC) framework for designing and evaluating complex interventions, with a longitudinal, quasi-experimental pretest-posttest design and with mixed methods of evaluation. In phase 0, a systematic literature search is conducted. In phase I, the interRAI PC is adapted for use in Belgium and implemented on the BelRAI-website and a practical training is developed. In phase II, the intervention is tested in fifteen nursing homes. Participating nursing homes fill out the interRAI PC during one year for all residents receiving palliative care. Using a pretest-posttest design with quasi-random assignment to the intervention or control group, the effect of the interRAI PC on the quality of palliative care is evaluated with the Palliative care Outcome Scale (POS). Psychometric analysis is conducted to evaluate the predictive validity of the PIM and the convergent validity of the CAP ‘Mood’ of the interRAI PC. Qualitative data regarding the usability and face validity of the instrument are collected through focus groups, interviews and field notes.DiscussionThis is the first study to evaluate the validity and effect of the interRAI PC in nursing homes, following a methodology based on the MRC framework. This approach improves the study design and implementation and will contribute to a higher generalizability of results. The final result will be a psychometrically evaluated CGA for nursing home residents receiving palliative care.Trial registrationClinicalTrials.gov NCT02281032. Registered October 30th, 2014.

The Care Perception Questionnaire

Summary: Major changes have taken place over the last decade in the mental health care services in Belgium as well as in the rest of Europe. To track these developments, Shepherd and colleagues developed an instrument to assess the degree of perceived accomplishment of 11 key areas in such care. This instrument was translated and adapted as the Care Perception Questionnaire. In clinical settings the instrument can be a good tool for exploring the perspective of patients and professionals regarding the 11 key areas. However, for research purposes it is not practical to work with the 28 separate items or with the 11 key areas. The goal of this study is to reduce the 11 key areas to a smaller number of scales with good psychometric properties and with relevance to clinical practice. Using principal-component analysis by means of promax rotation and scale construction, we developed four statistically reliable and meaningful scales: (1) support in social relations and practical aid, (2) treatment and monitorin...

Usefulness, feasibility and face validity of the interRAI Palliative Care instrument according to care professionals in nursing homes: A qualitative study

BACKGROUND Nursing homes are important locations for palliative care. High quality palliative care requires an evaluation of the different care needs of the nursing home residents. The interRAI Palliative Care instrument is a comprehensive assessment that evaluates the needs and preferences of adults receiving palliative care. OBJECTIVES This study aims to evaluate the usefulness, feasibility and face validity of the interRAI Palliative Care instrument. DESIGN A qualitative study was conducted, based on the abductive reasoning approach. SETTING Fifteen nursing homes in Flanders (Belgium). PARTICIPANTS Calls for participation were sent out by four umbrella organizations of Flemish nursing homes (Belgium) and at a national conference for nursing home staff. Nineteen care professionals (nurses, certified nursing assistants, psychologists, physiotherapists, quality coordinators and directors) of 15 nursing homes voluntarily agreed to participate in the study. METHODS During one year, care professionals evaluated the needs and preferences of all nursing home residents receiving palliative care by means of the interRAI Palliative Care instrument. Data on the usefulness, feasibility and face validity of the interRAI Palliative Care instrument were derived from notes, semi-structured interviews and focus groups with participating care professionals and were thematically analyzed and synthesized. Data were gathered between December 2013 and March 2015. RESULTS In general, the interRAI Palliative Care (interRAI PC instrument) is a useful instrument according to care professionals in nursing homes. However, care professionals made a series of recommendations in order to optimize the usefulness of the instrument. The interRAI PC instrument is not always feasible to complete because of organizational reasons. Furthermore, the face validity of the instrument could be improved since certain items are incomplete, lacking, redundant or too complex. CONCLUSIONS Findings highlight the importance of adapting the content of the interRAI Palliative Care instrument for use in nursing homes. Furthermore, the use of the instrument should be integrated in the organization of daily care routines in the nursing homes. Tackling the critical remarks of care professionals will help to optimize the interRAI Palliative Care instrument and hence support palliative care of high quality in nursing homes.

Palliative care needs and symptoms of nursing home residents with and without dementia: A cross-sectional study.

The aims of the present study were: (i) to describe palliative care needs and symptoms of older adults anticipated to be in the last year of their life in Flemish nursing homes (Belgium); and (ii) to evaluate whether these needs differ between residents with and without dementia.

Werken in kleinschalige woonvoorzieningen in Vlaanderen

SamenvattingEr is al veel geschreven over hoe kleinschalig wonen voor mensen met dementie er uit moet zien en wat de voordelen zijn voor de bewoners. Veel minder aandacht is er tot nu toe geweest voor de ervaringen van medewerkers in deze woonvoorzieningen. In Vlaanderen is daarnaar een uitvoerig onderzoek gedaan.

Do physicians discuss end-of-life decisions with family members? : a mortality follow-back study

OBJECTIVE Deaths from chronic illness are often preceded by a potentially life-shortening end-of-life decision (ELD). Involving family in these ELDs may have psychosocial benefits for them and the dying person. This study aims to examine how often ELDs are discussed with relatives of the dying person and which characteristics determine their involvement in those ELDs. METHODS A questionnaire survey was conducted in 2013 among physicians attending a large, stratified and representative sample of deaths (n = 6188) in Flanders. RESULTS In 72.3% of ELDs preceding death, family of the dying person were involved. Discussion of an ELD with family members was more likely when the decision was also discussed with the dying person, the ELD was made with the explicit intention to shorten life, specialized palliative care was provided or death occurred in an ICU. CONCLUSIONS Involving family in end-of-life decision making appears to be related to the type of formal care services involved, communication with the dying person and the motives behind the decision. PRACTICE IMPLICATIONS Our findings suggest a need to further expand a palliative care approach with a focus on both the dying person and their family within and across a variety of health care services.

Pionierswerk dat meer aandacht verdient

SamenvattingB. Deltour, C. Meire, L. Lemey, K. Devreese & H. Huys (2008). Een steen in je hand. Dementie bespreekbaar maken.