— Case studies / Research
Documented case studies and research.
Abstract
More than one out of ten adolescents suffer from mental illness at any given time. Still, there is limited knowledge about their involvement in mental healthcare. Adolescents have the right to be involved in decisions affecting their healthcare, but limited research focuses on their engagement and decision-making. Therefore, this systematic review aims to explore the existing experiences with, the effectiveness of, and safety issues associated with user involvement for adolescents’ mental healthcare at the individual and organizational level. A systematic literature review on user involvement in adolescents’ mental healthcare was carried out. A protocol pre-determined the eligibility criteria and search strategies, and established guidelines were used for data extraction, critical appraisal, and reporting of results. Quantitative studies were analysed individually due to heterogeneity of the studies, while qualitative studies were analysed using thematic synthesis. A total of 31 studies were included in the review. The experiences with user involvement were reported in 24 studies with three themes at the individual level: unilateral clinician control versus collaborative relationship, capacity and support for active involvement, the right to be involved; and two themes at the organizational level: involvement outcomes relevant to adolescents’ needs, conditions for optimal involvement. The effectiveness of user involvement was reported in seven studies documenting fragmented evidence related to different support structures to facilitate adolescents’ involvement. The safety associated with user involvement was not reported in any studies, yet a few examples related to potential risks associated with involvement of adolescents in decision-making and as consultants were mentioned.
Abstract
Background: Previous research into improving patient safety has emphasised the importance of responding to and learning from concerns raised by service users and carers. Expertise gained by the experiences of service users and their carers has also been seen as a potential resource to improve patient safety. We know little about the ease of raising concerns within mental health services, and the potential benefits of involving service users and carers in safety interventions. This study aimed to explore service user and carer perceptions of raising safety concerns, and service user, carer and health professional views on the potential for service user and carer involvement in safety interventions.
Methods: UK service users, carers and health professionals ( n= 185) were recruited via social media to a cross-sectional survey focussed on raising concerns about safety issues and views on potential service user and carer participation in safety interventions. Data were analysed using descriptive statistics, and free text responses were coded into categories.
Results: The sample of 185 participants included 90 health professionals, 77 service users and 18 carers. Seventy seven percent of service users and carers reported finding it very difficult or difficult to raise concerns. Their most frequently cited barriers to raising concerns were: services did not listen; concerns about repercussions; and the process of raising concerns, especially while experiencing mental ill health. There was universal support from health professionals for service user and carer involvement in safety interventions and over half the service users and carers supported involvement, primarily due to their expertise from experience.
Conclusions: Mental health service users and carers experience difficulties in raising safety concerns meaning that potentially useful information is being missed. All the health professionals and the majority of service users and carers saw potential for service users and carer involvement in interventions to improve safety, to ensure their experiences are taken into consideration. The results provide guidance for future research about the most effective ways of ensuring that concerns about safety can be both raised and responded to, and how service user and carer involvement in improving safety in mental health care can be further developed.
Abstract
Background: As a response to evidence that mental health service users and carers expect greater involvement in decisions about antipsychotic medication choice and prescribing, shared decision-making (SDM) has increasingly come to be viewed as an essential element of person-centred care and practice. However, this aspiration has yet to be realised in practice, as service users and carers continue to feel alienated from healthcare services. Existing understanding of the factors affecting the use of tools to support SDM is limited to inter-individual influences and wider factors affecting potential implementation are underexplored.
Aim: To explore the potential use of a tool designed to enhance collaborative antipsychotic prescribing from the perspectives of secondary care mental health service users, carers and professionals.
Methods: We conducted a qualitative study (semi-structured interviews and focus groups) using a convenience sample of 33 participants (10 mental health service users, 10 carers and 13 professionals) involved in antipsychotic prescribing in one Trust in the North of England. Participants were asked about the potential implementation of a tool to support SDM within secondary mental health services. Framework analysis incorporating the use of constant comparative method was used to analyse the data.
Results: The study identified a divergence in the views of service users and professionals, including a previously undocumented tendency for stakeholder groups to blame each other for potential implementation failure. This dissonance was shaped by meso and macro level influences relating to paternalism, legislative frameworks, accountability and lack of resources. Participants did not identify any macro level (policy or structural) facilitators to the use of the tool highlighting the negative impact of mental health contexts. Our study indicated that inter-individual factors are likely to be most important to implementation, given their potential to transcend meso and macro level barriers.
Conclusions: Consideration of the meso and macro level influences identified areas for potential intervention, including challenging professionals’ and service users’ perceptions of each other, rebalancing the notion of accountability within services and introducing new means for service user feedback on the quality of SDM. Multi-level strategies for facilitating the implementation of tools to support SDM are also presented.
Abstract
What is known on the subject?: Current policy advocates for the participation of family carers in care planning. Caring for a person with a mental illness requires a significant commitment from families to support their relative's recovery.
What this paper adds to existing knowledge?: The evidence of family involvement in care planning is generally fraught with conflicting experiences related to different requirements between mental health professionals, families and service users. Confidentiality remains contentious at a practice level in terms of information sharing and decision-making. There is a requirement and need for a shared understanding around care planning between families and mental health professionals.
What are the implications for practice?: The provision of written information pertaining to families regarding confidentiality is required at service level. Educational workshops concerning care planning and treatment options should be provided for service users, families and mental health professionals. Further research into effective service-wide strategies that explore with families how their engagement can be positively fostered in mental health services is warranted.
Abstract
What is known on the subject?: UK NHS policy highlights the importance of user and carer involvement in health professional training. We know little about service user and carer motivations and experiences of accessing training courses for delivering training to health professionals and how well such courses prepare them for delivering training to healthcare professionals. 'Involvement' in training has often been tokenistic and too narrowly focused on preregistration courses. There is limited data on how best to prepare and support potential service user and carer trainers.
What does this paper add to existing knowledge?: This study adds to the international literature by highlighting service user and carer motivations for accessing a training course for delivering training to health professionals. Service users and carers wanted to gain new skills and confidence in presentation/facilitation as well as to make a difference to healthcare practice. We also learned that service users desired different levels of involvement in training facilitation - some wanted to take a more active role than others. A one-size-fits-all approach is not always appropriate. Encountering resistance from staff in training was a previously unidentified challenge to service user and carers' experience of delivering training in practice and is a key challenge for trainers to address in future. Professional training involvement can be enhanced via specialist training such as the EQUIP training the trainers programme evaluated here.
What are the implications for practice?: When training service users and carers to deliver training to mental health professionals, it is important that service users are equipped to deal with resistance from staff. It is important that service user and carer roles are negotiated and agreed prior to delivering training to healthcare professionals to accommodate individual preferences and allay anxieties. Training for service users and carers must be offered alongside ongoing support and supervision. Mental health nurses (and other health professionals) will be better able to involve service users and carers in care planning. Service users and carers may feel more involved in care planning in future.