Elisabeth Dorant

Because of societal changes, family caregivers are becoming vital in long-term care provision for geriatric patients after discharge from hospital. Hospital-based geriatric care teams need tools to prepare and support family caregivers for their future caregiving role in the home environment. To explore the actual state and needs for implementing a suitable family caregiver support concept in a large geriatric hospital in Germany, a Participatory Health Research methodology was chosen. An academic investigator, assisted by a critical friend, facilitated all research steps. Geriatric care professionals joined as co-researchers and performed qualitative data collection using semi-structured interviews and focus group discussions. The entire co-research team took part in the thematic analyses. The existing family caregiver support was perceived as uncoordinated and incomplete, and a lack of knowledge about support programmes in the community was apparent. The needs regarding a comprehensive family caregiver support concept that acts on both individual caregiver as well as on system level, but also connects the two levels, were formulated. High grades of participation of hospital-based co-researchers could be achieved. A critical reflection on the research strategy revealed that the participatory methodology, although time-consuming, was perceived as a useful strategy within the hierarchically organized hospital.

Family care-givers are the backbone of the long-term support system for care receivers at home. Care for stroke survivors after rehabilitation primarily rests on the shoulders of family members, often of older age themselves. We report the outcomes of a new complex support programme, the Care-givers’ Guide, on both individual and system levels. Psycho-social support and personalised information were the main ingredients of this intervention. A two-level multi-methodological approach was needed, with two concurrent interconnected studies. Family care-givers reflected on outcomes at an individual level in a quant-QUAL study with a pre–post quantitative questionnaire and a post-intervention qualitative semi-structured interview. Practitioners participated in a QUAL-QUAL studyex postinterview, reflecting on the outcomes on the care-givers and on their own stroke care system. Individual family care-givers showed an increase in health literacy and level of psycho-social health. Qualitative analysis revealed improvement in knowledge, capability to act and individual empowerment; and stabilisation of sense of certainty, life balance and emotional wellbeing. Practitioners observed an optimisation of the stroke support system by improving professionals’ daily routine, augmenting the institutional support offer, securing the quality of patient care and increasing inter-institutional co-operation attempts. Positive outcomes of the support programme were observed on both evaluation levels: family care-givers showed improved health literacy and psycho-social health, whereas the professionals noticed an optimisation of the support system.

Background: Because of an expected increase in the number of family caregivers, there is a growing public and scientific interest in family caregiving and more specifically in the combination of family care with paid employment. It is important to gain insight in the family caregivers’ strain and determining factors in the job and family domain.Aim: The aim of the study was to examine the associations of job and family demands and job and family resources with indicators of caregivers’ psychological strain, that is caregiver burden, work‐related emotional exhaustion and general ill mental health. In our research, we focused on individuals who combine paid employment with family caregiving.Methods: A cross‐sectional design was used. The study sample was derived in 2011 from a Dutch financial organisation and a healthcare organisation. A digital fully structured questionnaire was used. The sample consisted of 187 employees who identified themselves as family caregivers. Descriptive statistics and hierarchical linear regression analysis were performed.Results: Job demands (i.e. workload, work–family conflict) and family demands (i.e. family care hours and family–work conflict) were significantly positively associated with all three domain‐specific indicators of strain. The resources of work–family and family–work enrichment and autonomy did not contribute to less experienced strain. More supervisor and colleague support was associated with lower ill mental health.Conclusion: Our study showed that job demands (workload, work–family conflict) and family demands (family care hours, family–work conflict) were clearly associated with caregiver strain, while associations for job and family resources were not evident. It remains necessary to pay attention to the demanding aspects of dual roles of family caregivers but also to investigate the resources they have available at work as well as in their home situation and explore their potential reducing effect on family caregivers’ strain.

Complex public health programmes may suffer from ‘teething problems’ during their implementation in practice, especially when programmes are developed top-down without the participation of end-users and service providers. Trying out and optimising a new concept in practice with stakeholder´s participation may enhance the programme´s chance of success. In this article we describe the participatory optimisation process of a German primary prevention programme for stroke caregivers, performed before its full-scale implementation. A Participatory Action Research (PAR) approach was applied immediately after the development of the preliminary programme that was led by the professional research team. Iterative PAR-cycles were composed of: observe, reflect, plan and act. Through PAR a matured concept, containing eight Conceptual Building Blocks, was obtained. The five preliminary building blocks: `Content´, `Human resources´, `Personalised approach´, `Timing´, and `Setting´, were prioritised to be the core blocks, providing the base for individual caregiver support. Three new building blocks: `Network building´, `Communication´, and `Social safety-net´ were designated as facilitating blocks, interconnecting and safeguarding the programme. PAR was found to be vital in systematically detecting the conceptual weaknesses of the preliminary concept and in adjusting its components to the needs of the key stakeholders, before full-scale implementation.

Background: Stakeholders are important contributors in the implementation of a complex public health intervention. During the development phase of an implementation, alongside careful design of its components and investing in the exploration of the dynamic multi‐stakeholder stroke rehabilitation setting, it is essential to assess possible implementation risks. Systematic stakeholder and risk analyses can guide the exploration process and enable teams involved in complex interventions to develop context‐tailored implementation management instruments.Purpose: To develop instruments that facilitate the implementation of the complex stroke caregiver intervention project in the real‐life support system.Methods: Systematic stakeholder and risk analyses were conducted composing five activities. Project stakeholders were identified, classified and assessed using a top‐down approach, while implementation risks were identified and assessed by applying a bottom‐up approach. Data were collected through interviews and focus groups.Results: Based on the knowledge provided by the stakeholders, two context‐tailored implementation management instruments were designed with a top‐down approach: (1) a comprehensive ‘stakeholder‐risk atlas’ providing individual stakeholder information, such as role, access, contribution, power and interest, expectations, perceived risks and specific engagement activities and (2) an overall ‘project implementation strategy’ concentrating on communication, transparency, network building and professionalism.Conclusion: Complex interventions will benefit from early and comprehensive stakeholder and risk analyses. The early involvement of stakeholders, with their insightful knowledge, enables the research team to develop context‐tailored implementation management instruments. Instruments will support the team during implementation and may impact positively on the outcome of the intervention. Knowledge can be obtained by combining top‐down and bottom‐up working approaches.

Background: Most young carer studies on parentification, resilience and coping concentrated on child carers up to age 18 years, whereas the group of young adult caregivers (18–24 years) has been neglected. In our study, we focused on these young adult caregivers, who are in a life phase in which young people usually are distancing themselves from their families and are striving for autonomy and freedom.Aim: To explore young adult carers’ perceptions of parentification, resilience and coping compared to young adult noncarers.Design: Cross‐sectional.Methods: In 2014/2015, data were collected on 297 healthcare students from a school for vocational education and a university in the Netherlands. A fully structured questionnaire was used. Young adult carers were compared with young adult noncarers on parentification, resilience and coping.Results: Fifty‐six students identified themselves as a carer: 40 vocational education students and 16 university students. Carers scored significantly higher than noncarers on three out of six parentification dimensions. No differences were found for resilience and problem‐focused coping behaviour, whereas results for emotion‐focused coping demonstrated a higher score for the carers compared to the noncarers.Conclusion: Although it is important to take care of the needs of all young carers, special attention should be given to those who are at the start of their adult lives, undergoing extensive changes and taking major decisions on study and career issues. Home‐care professionals and school counsellors should be able to recognise this group and their needs and activate support from specialised services and significant others.

Family caregivers are the backbone of the long-term care support system within the home environment. Comprehensive caregiver support programs require collaboration and coordination within the system. A new public health concept, Vade Mecum, aims to harmonize and professionalize family caregiver support initiatives in geriatric care settings in the Euregion Maas-Rhine. Exploration of the new concept recently started in Germany to gain in-depth insight into current support and the needs of the geriatric care team and family caregivers. Within the context of an exploratory qualitative study, a participatory health research (PHR) strategy was applied to make optimal use of experience and knowledge from the system. Care professionals, engaged as co-researchers, were responsible for decisions about the research question, data collection methods and procedures of engaging family caregivers. A research team representing all professions within the geriatric department was formed. Research objectives were formulated and an appropriate mix of qualitative data collection methods consisting of interviews, focus groups and story-telling was chosen. Needs and expectations of the new concept, and practical solutions for involving family caregivers were discussed. A PHR strategy resulted in initiating a qualitative study in a geriatric care setting carried out by care professionals from the department. Knowledge was generated in a co-creative manner, and co-researchers were empowered. A comprehensive understanding of the system serves as a starting point for advancement of the new family caregiver concept.

We provide an introduction on complexity in public health interventions, accentuate the exploration of stakeholders and project risks, and promote a systems thinking approach. Elementary aspects of project management will be presented. The example of a young informal caregiver intervention will be introduced, focusing on their needs and possible stakeholders.

Background: Stroke affects the entire family system. Failure to meet the needs of caregivers leads to physical and mental overburdening. Stroke caregivers may benefit from professional support. The literature reviews have shown that there is still no clarity concerning the most appropriate set‐up of a support programme. In Germany, there is no stroke caregiver support programme that operates throughout the course of rehabilitation.Aim: The aim was to develop a complex intervention programme for stroke caregivers in North‐Rhine Westphalia, Germany.Methods: A naturalistic enquiry approach, using a mixed‐methods design, was applied. Within one overarching qualitative study, three separate, explorative, inductive, qualitative substudies were conducted: (i) seven explorative interviews with experienced stroke caregivers, (ii) six semi‐structured interviews with professionals working within stroke rehabilitation and (iii) seventeen participant observations with focus on professional–caregiver interactions. Regional stroke units, rehabilitation centres, outpatient services and the home environment of caregivers were included. By means of a four‐step qualitative content analysis, all three data sets were coded, categorised and subsequently condensed into subthemes, clustered into main themes, and finally translated into ‘Conceptual Building Blocks’ of the programme.Results: The need for a personalised, holistic and multicomponent caregiver support programme emerged from all three substudies. Fourteen themes were condensed from the subthemes. Caregivers should be approached directly after stroke using outreach counselling. Support should be provided by a specially trained focal person across the entire patient's rehabilitation trajectory. The newly developed support programme consists of five flexible ‘Conceptual Building Blocks’: Content, Human Resources, Personalised Approach, Timing and Setting.Conclusion: Through a qualitative mixed‐methods design, an in‐depth contextual understanding of stroke caregiver needs within the rehabilitative support system was reached. This allowed the development of a context tailored comprehensive caregiver support programme consisting of five ‘Conceptual Building Blocks’.