Background: Structured psychotherapy is recommended as the preferred treatment of personality disorders. A substantial group of patients, however, has no access to these therapies or does not benefit. For those patients who have no (longer) access to psychotherapy a Collaborative Care Program (CCP) is developed. Collaborative Care originated in somatic health care to increase shared decision making and to enhance self management skills of chronic patients. Nurses have a prominent position in CCP’s as they are responsible for optimal continuity and coordination of care. The aim of the CCP is to improve quality of life and self management skills, and reduce destructive behaviour and other manifestations of the personality disorder. Methods/design: Quantitative and qualitative data are combined in a comparative multiple case study. This makes it possible to test the feasibility of the CCP, and also provides insight into the preliminary outcomes of CCP. Two treatment conditions will be compared, one in which the CCP is provided, the other in which Care as Usual is offered. In both conditions 16 patients will be included. The perspectives of patients, their informal carers and nurses are integrated in this study. Data (questionnaires, documents, and interviews) will be collected among these three groups of participants. The process of treatment and care within both research conditions is described with qualitative research methods. Additional quantitative data provide insight in the preliminary results of the CCP compared to CAU. With a stepped analysis plan the ‘black box’ of the application of the program will be revealed in order to understand which characteristics and influencing factors are indicative for positive or negative outcomes. Discussion: The present study is, as to the best of our knowledge, the first to examine Collaborative Care for patients with severe personality disorders receiving outpatient mental health care. With the chosen design we want to examine how and which elements of the CC Program could contribute to a better quality of life for the patients.
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This study tries to understand the power of knowledge within collaborative care networks to provide insights for designing successful collaboration within care networks by combining intersectionality and epistemic (in)justice. Becoming an informal carer for someone with an acquired brain injury (ABI) causes a dramatic disruption of daily life. Collaboration between professionals and carers with a migration background may result in unjust and unfair situations within care networks. Carer experiences are shaped by aspects of diversity which are subject to power structures and processes of social (in)justice in care networks. In this study, intersectionality was used to both generate complex in-depth insights into the different active layers of carer experiences and focus on within-group differences. Intersectionality was combined with the theoretical concept of epistemic (in)justice to unravel underlying dynamics in collaborative care networks contributing to the understanding that carers with a migration background are often not seen as ‘knowers of reality.’ This qualitative study conducted in the Netherlands between 2019 and 2022 incorporated three informal group conversations (N = 32), semi-structured interviews (N = 21), and three dialogue sessions (N = 7) with carers caring for someone with an ABI. A critical friend and a community of practice, with carers, professionals, and care recipients (N = 8), contributed to the analysis. Three interrelated themes were identified as constituting different layers of the carer experience: (a) I need to keep going, focusing on carers' personal experiences and how experiences were related to carers social positioning; (b) the struggle of caring together, showing how expectations of family members towards carers added to carer burden; and (c) trust is a balancing act, centering on how support from professionals shaped carers' experiences, in which trusting professionals' support proved challenging for carers, and how this trust was influenced by contextual factors at organizational and policy levels. Overall, the need for diversity-responsive policies within care organizations is apparent. Carers with a migration background need to feel heard so they can meaningfully tailor care to meet recipients' needs.
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Abstract Background: To address the lack of social interaction and meaningful activities for persons with dementia (PWD) in nursing homes an artistic Photo-Activity was designed. The present study aims to develop a digital version of the Photo-Activity and to investigate its implementation and impact on nursing home residents with advanced dementia, and their (in)formal carers. Methods: First, within a user-participatory design, a digital-app version of the Photo-Activity will be developed and pilot-tested, in co-creation with (in)formal carers and PWD. Next, the feasibility and effectiveness of the Photo-Activity versus a control activity will be explored in a randomized controlled trial with nursing home residents (N=90), and their (in)formal carers. Residents will be offered the Photo- Activity or the control activity by (in)formal carers during one month. Measurements will be conducted by independent assessors at baseline (T0), after one month (T1) and at follow up, two weeks after T1 (T2). Qualitative and quantitative methods will be used to investigate the effects of the intervention on mood, social interaction and quality of life of the PWD, sense of competence of informal carers, empathy and personal attitude of the formal carers, and quality of the relationship between the PWD, and their (in)formal carers. In addition, a process evaluation will be carried out by means of semi-structured interviews with the participating residents and (in)formal carers. Finally, an implementation package based on the process evaluation will be developed, allowing the scaling up of the intervention to other care institutions. Discussion: Results of the trial will be available for dissemination by Spring 2023. The digital Photo-Activity is expected to promote meaningful connections between the resident with dementia, and their (in)formal carers through the facilitation of person-centered conversations. Trial registration: Netherlands Trial Register: NL9219; registered (21 January 2021); NTR (trialregister.nl)
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Abstract Background: To address the lack of social interaction and meaningful activities for persons with dementia (PWD) in nursing homes an artistic Photo-Activity was designed. The present study aims to develop a digital version of the Photo-Activity and to investigate its implementation and impact on nursing home residents with advanced dementia, and their (in)formal carers. Methods: First, within a user-participatory design, a digital-app version of the Photo-Activity will be developed and pilot-tested, in co-creation with (in)formal carers and PWD. Next, the feasibility and effectiveness of the Photo-Activity versus a control activity will be explored in a randomized controlled trial with nursing home residents (N=90), and their (in)formal carers. Residents will be offered the Photo- Activity or the control activity by (in)formal carers during one month. Measurements will be conducted by independent assessors at baseline (T0), after one month (T1) and at follow up, two weeks after T1 (T2). Qualitative and quantitative methods will be used to investigate the effects of the intervention on mood, social interaction and quality of life of the PWD, sense of competence of informal carers, empathy and personal attitude of the formal carers, and quality of the relationship between the PWD, and their (in)formal carers. In addition, a process evaluation will be carried out by means of semi-structured interviews with the participating residents and (in)formal carers. Finally, an implementation package based on the process evaluation will be developed, allowing the scaling up of the intervention to other care institutions. Discussion: Results of the trial will be available for dissemination by Spring 2023. The digital Photo-Activity is expected to promote meaningful connections between the resident with dementia, and their (in)formal carers through the facilitation of person-centered conversations. Trial registration: Netherlands Trial Register: NL9219; registered (21 January 2021); NTR (trialregister.nl)
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In Nederland verleent ongeveer een derde van de volwassen bevolking onbetaalde zorg. Het verlenen van mantelzorg kan in normale tijden zeer belastend zijn, maar de impact van een volksgezondheidscrisis op mantelzorgers is grotendeels onbekend. Deze studie richt zich op de vraag hoe de belasting van mantelzorgers veranderde na de COVID-19 pandemie en welke kenmerken verband hielden met deze veranderingen. We gebruiken zelfgerapporteerde gegevens van een steekproef van 965 mantelzorgers uit Nederland na 3 maanden pandemie om te onderzoeken hoe de objectieve belasting (d.w.z. uren besteed aan mantelzorg) en de subjectieve belasting waren veranderd, en wat hun zorggerelateerde kwaliteit van leven (CarerQol) was. We vonden dat de subjectieve belasting gemiddeld licht was toegenomen (van 4,75 naar 5,04 op een schaal van 0-10). Uit onze analyse bleek echter dat sommige zorgverleners er meer last van hadden dan anderen. De zwaarst getroffen zorgverleners waren vrouwen, met een laag inkomen, een betere lichamelijke gezondheid, een verminderde psychische gezondheid, zorgtaken voor kinderen, een langere duur van de zorg en zorgverleners die zorgden voor iemand met een verminderde lichamelijke en psychische gezondheid. Gemiddeld bleef de tijd die aan zorg werd besteed gelijk (een mediaan van 15 uur per week), maar bepaalde groepen zorgverleners ervoeren wel een verandering, namelijk degenen die zorg verleenden aan mensen in een instelling en aan mensen met een betere psychologische gezondheid vóór de pandemie. Bovendien hadden zorgverleners die veranderingen in objectieve belasting ervoeren niet dezelfde kenmerken als degenen die veranderingen in ervaren belasting en kwaliteit van leven ervoeren. Dit laat zien dat de gevolgen van een volksgezondheidscrisis voor zorgverleners niet kunnen worden gevangen door alleen te kijken naar objectieve of subjectieve belastingsmaten of kwaliteit van leven. Beleid voor langdurige zorg dat erop gericht is zorgverleners te ondersteunen om vol te houden tijdens een toekomstige crisis, moet gericht zijn op zorgverleners met een verhoogd risico op subjectieve belasting en een lagere CarerQol, zoals vrouwen, mensen met een laag inkomen en mensen met zorgtaken. Dergelijk beleid moet er rekening mee houden dat een vermindering van de objectieve belasting niet noodzakelijk leidt tot een vermindering van de subjectieve belasting voor alle zorgverleners.
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The transition from home to a nursing home can be stressful and traumatic for both older persons and informal caregivers and is often associated with negative outcomes. Additionally, transitional care interventions often lack a comprehensive approach, possibly leading to fragmented care. To avoid this fragmentation and to optimize transitional care, a comprehensive and theory-based model is fundamental. It should include the needs of both older persons and informal caregivers. Therefore, this study, conducted within the European TRANS-SENIOR research consortium, proposes a model to optimize the transition from home to a nursing home, based on the experiences of older persons and informal caregivers. These experiences were captured by conducting a literature review with relevant literature retrieved from the databases CINAHL and PubMed. Studies were included if older persons and/or informal caregivers identified the experiences, needs, barriers, or facilitators during the transition from home to a nursing home. Subsequently, the data extracted from the included studies were mapped to the different stages of transition (pre-transition, mid-transition, and post-transition), creating the TRANSCITmodel. Finally, results were discussed with an expert panel, leading to a final proposed TRANSCIT model. The TRANSCIT model identified that older people and informal caregivers expressed an overall need for partnership during the transition from home to a nursing home. Moreover, it identified 4 key components throughout the transition trajectory (ie, pre-, mid-, and post-transition): (1) support, (2) communication, (3) information, and (4) time. The TRANSCIT model could advise policy makers, practitioners, and researchers on the development and evaluation of (future) transitional care interventions. It can be a guideline reckoning the needs of older people and their informal caregivers, emphasizing the need for a partnership, consequently reducing fragmentation in transitional care and optimizing the transition from home to a nursing home.
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This paper reports on the research methods used in five different projects aimed at supporting people living with dementia in their everyday lives and activities of daily living. In all five projects, people living with dementia and their informal carers were involved. Applied methods ranged from passive involvement in the form of observations to very active involvement consisting of consultation rounds and think-aloud sessions. The projects highlighted that people living with dementia can still contribute to the development of solutions that support them in the self-management of their symptoms and challenges, as well as technological solutions that support them in daily living. LinkedIn: https://www.linkedin.com/in/jvhoof1980/
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A burden scale is described that is conceptually specific by concentrating on an assessment of different aspects of distress of care-giving burden and conceptually sensitive by distinguishing two dimensions: the relationship of the carer and the care-receiver and the limitations in the personal life of the carer. To develop a burden scale an analysis was carried out on a database of an intervention study in which 89 informal caregivers of psychogeriatric patients were interviewed twice. A principal components analysis was carried out showing two main factors that could be interpreted as the two dimensions mentioned above. Reliability analysis showed a Cronbach's alpha of 0.84 for the total care-giving burden scale (13 items) and 0.77 for both subscales (7 and 6 items), confirmed in an independent sample. An analysis of the hierarchy of items (Mokken Scale Analysis) showed a strong and moderate hierarchy for the subscales and the total scale, respectively. Finally, an analysis of construct validity showed strong correlations of care-giving burden with depression of the carer and deviant behaviour of the patient.
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Psychogeriatric patients are a very vulnerable group among the elderly. A relative large proportion is institutionalized. In addition, many studies point to the heavy burden on the informal carers of psychogeriatric patients, frequently leading to depression. Geriatric expertise in primary care, however, is limited. To complement this expertise, an experiment was conducted involving a geriatric assessment unit in a nursing home. An evaluation study was carried out including 96 patients, 89 of whom were looked after by informal carers. Data were collected from the unit and two ‘external controls’, both the GP and the informal carer, were interviewed before and 3 months after the intervention. The results show that, in a majority of cases, a new psychiatric or somatic diagnosis could be arrived at. Advice was given on drugs and physiotherapy and the monitoring of behaviour. The impact of the behavioural problems of patients was diminished after the intervention according to the informal carers. Moreover, the sense of competence of the informal carers was enhanced. The health status of the informal carers and the social support they received remained the same. Furthermore,
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Challenges in keeping healthcare affordable make informal care increasingly important. It is essential to understand the context in which people provide informal care and gain insight into their wishes with regard to the division of care responsibilities. A total of 37 interviews and eight focus groups were conducted to investigate how Dutch carers’ care attitudes are shaped. Results show that carers’ intersecting social positions, such as gender, migration background, socio-economic status and stage of life, largely influence their care attitudes. Carers want to provide care but experience challenges in doing so. They request a government that takes the lead and facilitates cooperation with professionals.
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