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Implementing and evaluating the first german young-carers project: intentions, pitfalls and the need for piloting complex interventions.

ABSTRACT: The aim of the study was to develop, implement and evaluate a concept for the first support program for young carers and their families in Germany. This paper intends to critically review the implementation of that study and describe the problems experienced by the research team, including: the complexity of the intervention itself, the difficulty of finding host organizations, the lack of infrastructure, different values and beliefs about the project aims held between the host organization and the research team, shortage of time, identifying and recruiting families among the hidden population of young carers. These initial problems led to the re-constructuring of the original research design. In order to evaluate factors that influenced these difficulties, the original research intentions, emerging problems and their consequences will be presented.

SUBMITTER: Schlarmann JG

PROVIDER: S-EPMC3109739 | biostudies-literature | 2011

REPOSITORIES: biostudies-literature

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Implementing and evaluating the first german young-carers project: intentions, pitfalls and the need for piloting complex interventions.

Schlarmann Jörg Große JG Metzing-Blau Sabine S Schnepp Wilfried W

The open nursing journal 20110407

The aim of the study was to develop, implement and evaluate a concept for the first support program for young carers and their families in Germany. This paper intends to critically review the implementation of that study and describe the problems experienced by the research team, including: the complexity of the intervention itself, the difficulty of finding host organizations, the lack of infrastructure, different values and beliefs about the project aims held between the host organization and ...[more]

PMID: 21660183

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Project description:BACKGROUND:Under the Doris Duke Charitable Foundation's African Health Initiative, five Population Health Implementation and Training partnerships were established as long-term health system strengthening projects in five Sub-Saharan Countries. In Zambia, the Centre for Infectious Disease Research in Zambia began to implement the Better Health Outcomes through Mentorship and Assessments (BHOMA) in 2009. This was a combined community and health systems project involving 42 public facilities and their catchment populations. The impact of this intervention is reported elsewhere, but less attention has been paid to evaluation approaches that generate an understanding of the forces shaping the intervention. This paper is focused on understanding the implementation practices of the BHOMA intervention in Zambia. METHODS:Qualitative approaches were employed to understand and explain health systems intervention implementation practices between 2014 and 2016. We purposively sampled six clinics out of the 42 that participated in the BHOMA project within three districts of Lusaka province in Zambia. At the facility-level we targeted health centre in-charges, health workers, and community health workers. In-depth interviews (n?=?22), focus group discussions (n?=?3) and observations were also collected and synthesised. RESULTS:The major health system challenges addressed by the BHOMA project included poor infrastructure, lack of human resources, poor service delivery, long distances to health centres and inadequate health information systems. In order to implement this in the districts it was necessary to engage with the Ministry of Health and district managers, however, these partners were not actively engaged in intervention design There was great variation in perceptions about the BHOMA interventions. The implementation team considered BHOMA as a 'proof of concept pilot project', running parallel to the public health system, while district health officials from the Ministry of health understood it as a 'long term partner' and were therefore resistant to the short-term nature of the intervention. CONCLUSIONS:The Normalization Process Theory provided a useful framework to understand and explain implementation processes for the BHOMA intervention in Zambia. We clearly demonstrated the applicability of all the four main components of the NPT: coherence (or sense-making); cognitive participation (or engagement); collective action and reflexive monitoring. We demonstrated how complex and dynamic the intervention played out among different actors and how implementation was affected by difference in appreciation and interpretation of the goal of the intervention. Our findings support the growing demand for process evaluations to use theory based approaches to examine how context interact with local interventions to affect outcomes intended or not. TRIAL REGISTRATION:ClinicalTrials.gov Identifier: NCT01942278 . Registered: September 13, 2013 (Retrospectively registered).

Project description:BackgroundPatients undergoing hemodialysis have a high mortality rate and yet underutilize palliative care and hospice resources. The Shared Decision Making-Renal Supportive Care (SDM-RSC) intervention focused on goals of care conversations between patients and family members with the nephrologist and social worker. The intervention targeted deficiencies in communication, estimating prognosis, and transition planning for seriously ill dialysis patients. The intervention showed capacity to increase substantially completion of advance care directives. The HIGHway Project, adapted from the previous SDM-RSC, scale up training social workers or nurses in dialysis center in advance care planning (ACP), and then support them for a subsequent 9-month action period, to engage in ACP conversations with patients at their dialysis center regarding their preferences for end-of-life care.MethodsWe will train between 50-60 dialysis teams, led by social workers or nurses, to engage in ACP conversations with patients at their dialysis center regarding their preferences for end-of-life care. This implementation project uses the Knowledge to Action (KTA) Framework within the Consolidated Framework for Implementation Research (CFIR) to increase adoption and sustainability in the participating dialysis centers. This includes a curriculum about how to hold ACP conversation and coaching with monthly teleconferences through case discussion and mentoring. An application software will guide on the process and provide resources for holding ACP conversations. Our project will focus on implementation outcomes. Success will be determined by adoption and effective use of the ACP approach. Patient and provider outcomes will be measured by the number of ACP conversations held and documented; the quality and fidelity of ACP conversations to the HIGHway process as taught during education sessions; impact on knowledge and skills; content, relevance, and significance of ACP intervention for patients, and Supportive Kidney Care (SKC) App usage. Currently HIGHway is in the recruitment stage.DiscussionEffective changes to advance care planning processes in dialysis centers can lead to institutional policy and protocol changes, providing a model for patients receiving dialysis treatment in the US. The result will be a widespread improvement in advance care planning, thereby remedying one of the current barriers to patient-centered, goal-concordant care for dialysis patients.Trial registrationThe George Washington University Protocol Record NCR213481, Honoring Individual Goals and Hopes: Implementing Advance Care Planning for Persons with Kidney Disease on Dialysis, is registered in ClinicalTrials.gov Identifier: NCT05324878 on April 11th, 2022.

Project description:BackgroundAccording to new Norwegian laws, mental healthcare for adults are obligated to assess all patients who are parents and to act on their children's needs. This article describes the study protocol of implementing the interventions Family Assessment and Child Talks for children of patients in the adult psychiatry of the University Hospital of Northern Norway. The project is designed to evaluate the process of changes in clinical practice due to the implementation of two interventions. The interventions to be implemented are a standardised Family Assessment Form and the intervention called Child Talks. The family assessment form is an intervention to identify children of mentally ill parents and their needs. The intervention Child Talks is a health-promoting and preventive intervention where the mental health workers talk with the family about the situation of the children and their needs.Methods/designThere are two groups of participants in this study: (1) mental health workers in the clinic (N=220) and (2) patients who are parents (N=200) receiving treatment in the clinic. (1) In the evaluation of clinical practice, the authors use a pre-test, post-test and 1-year follow-up design. At pre-test, the authors evaluate status quo among mental health workers in the clinic regarding knowledge, attitudes, collaborative routines and clinical practice related to families with parental mental illness. After the pre-test is finished, the project move on to implement the interventions Family Assessment Form and Child Talks in the clinic. At post-test and 1-year follow-up, the authors evaluate the impact of implementing the Family Assessment Form in terms of how many children were identified and offered Child Talks in the clinic or referred to other services for additional support. (2) In the evaluation of parents/patients experience with the interventions, the authors use a pre-test post-test design. To identify children of mentally ill patients, the authors collect data on demographical variables for the patient and the child at pre-measures, as well as data on parental competence (PSOC) and parental concerns (PEDS) about their children. At post-measures, the authors evaluate the impact of the intervention in terms of user satisfaction, as well as changes between pre- and post-measures on parental competence (PSOC) and parental concerns (PEDS) about their children.DiscussionThe implication of implementing new interventions to safeguard children of mentally ill patients and the limitation of not measuring child development directly are discussed.

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Implementing and evaluating the first german young-carers project: intentions, pitfalls and the need for piloting complex interventions.

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Implementing and evaluating the first german young-carers project: intentions, pitfalls and the need for piloting complex interventions.

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