Basic family involvement and support
The results from this study demonstrate a general lack of structures and standard procedures in Norwegian CMHCs, when it comes to family involvement and support for persons with psychotic disorders.
Several units had local resource persons with special competence in family involvement, who worked hard to increase the awareness and recognition of their field. During this survey, the project group took note of many exemplary practices that could inspire other units and clinicians in the subsequent phases of the IFIP trial. Some of the clinical sites had established local structures and routines for basic family involvement and support, and several had information meetings or other support measures for relatives.
In most units however, contact with and involvement of relatives appeared both random and inadequate, depending highly on the practice of the patient’s clinician. As such, the results of this systematic survey of mental health services is consistent with the findings of previous research on relatives’ experiences [2, 3]. The poor organisation of family involvement and support for adult relatives contrasted distinctly with the legally mandated structures, procedures and responsibilities for children as next of kin. Nearly all the units in our survey had personnel responsible for taking care of children as next of kin and written procedures on this subject, which were widely used among the remaining personnel. The legislation concerning children as next of kin was passed in 2009, whereas the guidelines on family involvement in the health- and care services were published in 2017. The differences in implementation rates may be primarily due to legal incentives (and sanctions) being more important to administrators than following guidelines, but also related to the longer time span and family work towards children receiving more attention. In any case, it shows that improvement in CMHCs’ family work is feasible with appropriate focus, support, and incentives.
Several clinicians had frequent contact with relatives by phone, and the BFIS scale does not include the penetration rate of such calls. The low percentage of relatives who were invited to a conversation at the CMHC, with or without the patient present, indicate that such conversations are not part of the standard approach in most units. The variable use of crisis plans and infrequent documentation of family involvement in the patients’ discharge reports may disrupt the continuity of care that is vital to this patient group and their next of kin.
The fact that none of the units had annual training of their clinical personnel in family involvement is a particularly important finding, since the education of health professionals in Norway have generally given limited attention to this subject. It therefore requires substantial effort within the health services to implement family involvement as a standard approach among clinicians.
There may be several reasons why family involvement has received such little attention, in both training and implementation in Norwegian mental healthcare. The research literature suggest that poor implementation is a problem internationally, and that barriers to family involvement exist on multiple levels. On a system level, these include a lack of financial incentives and explicit prioritization from managers and politicians, organisational cultures and paradigms, attitudes of leaders and staff towards evidence-based practices in general and/or family involvement in particular, inter-professional struggles, and poor access to training and supervision [4, 17, 18]. As part of the IFIP trial, we aim to investigate barriers to and facilitators for family involvement practices on a clinical, organisational and political level in the Norwegian context, trough qualitative methods.
The BFIS scale
The present model for basic family involvement and support is novel and has not yet been investigated scientifically as a whole. It consists of elements whose rationale varies from scientific evidence to legal frameworks and rights, as well as moral obligations. This reflects the composite nature of the guidelines that the model is based on. As such, the BFIS fidelity scale is one of the first instruments of its kind to measure the implementation of guidelines and practices that are not exclusively evidence-based. We would argue that this new application of the fidelity methodology is justified, since many practices within mental health services are based on predominantly ethical and/or legal considerations, rather than expectations of treatment effect. The scale should also be appropriate to measure basic family involvement and support for patients with other forms of severe mental illness. Perhaps, with some modifications, it may be suitable for health services towards other patient groups with chronic and severe illness.
Concerning psychometric properties, the scale shows promising IRR, appears to have relevant content and captures variability in practice, but we cannot yet establish its benchmark value. The percentage of exact agreement for each item was generally high, but the lack of standard procedures and high variability among practitioners complicated the scoring of some items. The fact that units who offered FPE did not score significantly better or worse on the BFIS scale, indicates that the scale measures practices that are independent of FPE, which may support the introduction of the scale. The Mann-Whitney U test was appropriate, because of the low sample size and the irregular distribution of the data. However, given the low sample size and generally low power of non-parametric tests, this lack of significant correlation should be interpreted with caution.
The Norwegian guidelines recommending structured family interventions as a first-line treatment for persons with psychotic disorders were published in 2013, and the evidence supporting such interventions has been available for much longer. Yet, only 4.2% of the patients with psychotic disorders in our participating units had received FPE, and nearly half of the sites did not offer FPE or any family intervention at all. These findings are consistent with the international research literature [4, 5].
In the units who did provide FPE, the penetration rate was low and the majority of sites lacked structures and procedures to identify and recruit eligible patients, and to coordinate FPE activities. However, the quality of the FPE provided was consistently high, suggesting that the training and supervision the units had received from The Early Intervention in Psychosis Advisory Unit for South East Norway (TIPS Sør-Øst) was excellent. Yet, training and guidance in FPE by itself did not appear sufficient to implement the intervention as an integrated part of the unit’s organisation and practice. This is revealed by the poor GOI scores, which illustrate the benefits of using scales that not only measure practice and content, but also organisation, implementation and individualisation . The BFIS scale is an attempt to combine these elements in a single instrument.
Strengths and limitations
One advantage of fidelity measurements is the standardised and structured assessment of all units in a sample . A weakness of this approach is that one does not investigate practices that are not addressed by the instruments. However, in our fidelity reports we recorded if the units had any family involvement practices that our instruments failed to credit, and these were few.
We could have included additional data sources, such as observations of FPE-sessions and interviews with patients and relatives. A review of randomly chosen patient records at each site would have strengthened the validity of our survey, particularly of the penetration rate items. Unfortunately, gaining access to the patient record software proved so legally complicated that this endeavour had to be abandoned.
When it comes to the representability of the sample, we only included units from the southeast of Norway and we exclusively measured their practice towards patients with psychotic disorders and their relatives. In terms of external validity, these findings do not necessarily reflect the situation in other regions of the country and/or practice towards other patient groups. Yet, the sample of clinical units in our investigation include both urban and rural sites and serves approximately 25% percent of the Norwegian population. Consequently, our survey measures specialist health services towards a large part of this patient group and their relatives in Norway. We have little reason to believe that the clinical units’ family involvement practices towards other patient groups with severe mental illness were more systematic or of higher quality.
The recruitment of clinical units, both in terms of sample size and type of units, was made considering the trial as whole, and not specifically this cross-sectional sub-study. It could be argued that units who did not offer FPE had greater incentives to join our research project, which could lead to a form of selection bias. However, most of the CMHCs in the region agreed to participate, and the ratio of units who offered FPE versus those who did not was the same among participant and non-participant CMHCs.