20/70 Self-neglect in the community: commissioning brief
Open: July 08 2020 Close: 28 Jan 2021 (two stage – Stage 1 to Stage 2)
The James Lind Alliance Priority Setting Partnership Adult Social Work (2018) identified self-neglect as one of their top ten priorities. The implementation of Statutory Guidance to the Care Act in 2015  provides a new framework for adult social care and the issue of self-neglect has been included within the framework’s safeguarding category. This has a range of implications and brings self-neglect within the remit of the Safeguarding Adult Board (SAB), which has a statutory duty under the Care Act to help and protect adults with care and support needs who experience, or are at risk of, abuse and neglect and are unable to protect themselves . Self-neglect intervention at times involves an interface between the Care Act and the Mental Capacity Act and/or the Mental Health Act, as well as a wider range of legal rules, frequently making the management of self-neglect complex and requiring a coordinated and multi-sectoral response.
The data on the estimates of the prevalence of self-neglect in the UK is limited. Self-neglect cases are estimated to range from 157 to 211 per 100,000 population over a three-year period in Scotland . A retrospective study of public health nurses’ caseloads in Ireland suggests a prevalence rate of 142 self-neglect cases per 100,000 population . The lack of data on prevalence is also complicated by the absence of consensus on an operational definition of self-neglect and variation in the use of screening tools and interventions . The shift in policy and the legal position, combined with a lack of prevalence data or a definition, makes it even more important to understand the dynamics of self-neglect and how best health and social care and other community agencies should approach the issues it raises.
The scope of this call includes self-neglect of all forms, encompassing different manifestations such as hoarding behaviour, squalor and infestation in relation to a variety of underlying conditions such as psychological or psychiatric conditions or cognitive impairment. These may result from any cause e.g. dementia, trauma or learning disability as well as self-neglecting behaviour where the underlying cause is not known. Other conditions may also be considered, such as self-neglect associated with frailty or obesity making it difficult to self-care and keeping the surrounding environment clean.
To be within remit for the call, research must focus on any or all the following:
- a person-centred approach to self-neglect
- understanding barriers to the implementation of tools, framework and standard assessment approaches
- the impacts of interventions used
- effective and cost-effective models of multi-agency working to achieve positive outcomes for individuals who experience self-neglect.
The following issues are of interest, though other issues may be proposed. All applications should align with the existing and ongoing evidence base and should provide a careful justification of the importance of the proposed research and the potential impact it will have on health and social care services and a broad range of public health services such as fire and environmental services.
- Service user perspectives: How are the assessment process and the interventions to address self-neglect seen by individuals who experience self-neglect and how does this affect their short and longer-term outcomes and change their perspective?
- Empowerment and Dignity: What are the most effective approaches to building respectful and trusting relationships with individuals who self-neglect whilst maintaining their rights, dignity and confidentiality? How can these approaches be used to empower individuals as much as possible, considering the varying degrees of capacity that might exist in cases of self-neglect?
- Assessment Tools: What are the barriers and factors that facilitate the implementation of assessment in self-neglect? What are the most effective tools, frameworks and standard assessment approaches to detect and identify individuals with self-neglect or identify those at risk from slipping into problems? Which of these are the most reliable, valid, culturally sensitive, appropriate to the individual’s circumstances, and help them feel empowered throughout the process?
- Effective Interventions and Outcomes: How effective are the different interventions in self-neglect being utilised in health and social care, and the wider interagency network, including cost analysis? How do these interventions impact on individual’s, their carers’ and families’, health and social care outcomes (short and long term) and safety? What is the impact of these interventions on neighbours and wider communities?
- Multi-Agency Models: What is the evidence for different multi-agency models that enhance role clarity and a coordinated way of working towards a shared goal with positive outcomes? Which organisational models and care pathways facilitate multisector responses and effective outcomes?
- Workforce Capacity: How can local, regional and national organisations and professional bodies improve tools and strategies to strengthen workforce capacity within their own remit and to ensure a joined up multidisciplinary person-centred approach for community delivery of responses to address self-neglect?
Purpose of the call
The Statutory Guidance to the Care Act suggests self-neglect “covers a wide range of behaviour neglecting to care for one’s personal hygiene, health, or surroundings and includes behaviour such as hoarding” . Self-neglect is an extreme lack of self-care, sometimes associated with hoarding behaviour and other issues such as addictions. People who neglect themselves often decline help from others and in many cases do not feel that they need help. Currently there is some limited guidance including hoarding protocols that may support professionals in decision making and signpost both the individual who is self-neglecting and the professional to support services and interventions. However, this still causes challenges for professionals, who frequently feel concerned about risks and are uncertain as to what can or should be done. The self-neglect care pathway is often positioned at the interface between different agency responsibilities, engaging multiple professional bodies and complex procedural arrangements. Recent research  suggests that although there is a body of evidence to support interventions used in social care for self-neglect, there are still evidence gaps around the individual’s perspective of self-neglect, innovative tools and strategies or assessment and interventions, a person-centred approach to the use of interventions and their impact on individuals and effective multiagency systems and care pathways.
Self-neglect may occur as a result of various underlying disorders, such as dementia, brain damage and learning disability or may be symptomatic of a variety of mental illnesses, such as depression or psychotic disorders, obsessive compulsive disorders, addictions, traumatic life changes or reduced motivation as a side effect of medication. However, it is not always possible to establish the root cause for self-neglecting behaviours, which may reflect a complex interaction of a variety of underlying issues. Self-neglect of the home environment covers a multitude of manifestations including squalor, dilapidation of home, hoarding behaviour and infestation that can themselves be the result of self-neglect of the individual, including a lack of domestic and personal hygiene.
These different manifestations frequently bring a host of legal, ethical and practical difficulties for professionals involved in deciding when someone’s self-neglecting behaviour requires an intervention. Referrals may arise from complaints or concerns by neighbours to different agencies. At times, individuals who are self-neglecting may be brought to the attention of agencies by others in the community out of concern for themselves rather than the person who is self-neglecting and may be less sympathetic to them. Additionally, different perspectives and levels of understanding of the underlying drivers for self-neglect can influence the response and attitudes by different agencies, which in turn may result in longer term negative consequences for the individual involved.
Capacity is a complex attribute, involving the ability to understand not only the consequences of a decision but also the ability to execute the decision. A crucial determinant of response to self-neglect includes the differentiation between an individual’s ability and unwillingness to care for oneself, and the capacity to understand the consequences of their action. The number of studies on the perception of people who neglect themselves is limited. The autonomy of an adult with capacity is likely to be respected however, some Safeguarding Adult Reviews indicate capacity is not always sufficiently probed or assessed in people who are self-neglecting. There is confusion between presumption of capacity as a valid legal threshold and imperative not to question someone’s capacity unless it’s obvious that they lack capacity, and ideally the assessment of capacity needs to be recorded and monitored . Moreover, efforts towards maintaining supportive, trusting and empowering relationships are important in enabling interventions to be accepted by individuals who self-neglect to ensure positive short- and longer-term outcomes for them.
Some assessment tools currently used for self-neglect do not take full account of the complex nature of an individual’s mental capacity. Comprehensive and individually tailored assessment is emphasised, using screening tools to assist professionals in identifying capabilities and risks. In the UK, the responses to self-neglect may vary depending on the involvement of different agencies and therefore greater importance needs to be given to interagency communication, collaboration and sharing of risk and information . Going forward, effective multi-sectoral models of care are required to facilitate a co-ordinated response which maintains the dignity and respect of the individual involved, whilst ensuring good short- and longer-term outcomes for them.
Existing evidence  shows variable responses, where situations of self-neglect place unusual and challenging demands on health and social care and other professionals (housing providers, fire and environmental services, carers and families), and many feel they are under-prepared in terms of understanding the various manifestations of self-neglect, awareness of interventions and knowledge of the legal framework. As self-neglect is related to someone’s home environment and its condition, it therefore creates further challenges for local authority housing professionals in the absence of clear policies and procedures. Low levels of staff training have been found to be a risk factor in failing to identify abuse or neglect in older adults  suggesting training is effective but with the caveat that not all approaches to training may be equally effective. A study focused on adult safeguarding training suggested a 20% increase in knowledge led to increased staff confidence. More confident staff offered more sophisticated responses regarding improving safeguarding processes. Training needs to be considered in the context of factors that influence its effectiveness such as clear goals, processes, support and supervision, a positive learning climate, appropriate working environment, leadership, policies, user involvement and adequate staffing .
Interventions used in self-neglect may include occupational therapy, behaviour change therapy, domiciliary care, welfare benefit advice and assistance with daily living such as personal care, preparing and eating food or using toilet facilities. Enforcement interventions are used to reduce risks when all efforts of engagement have failed. Examples of such legal interventions include the power of entry or use of enforcement notices by the environmental health agencies of local authorities who can become involved as the result of complaints from neighbours. Studies on effective interventions for adults with hoarding behaviour put emphasis on engaging with and connecting people with community-based resources. A study reports the effectiveness of relationship-based and outcome-based focus in self-neglect but is limited by the study’s design and sample size in terms of generalisability . Research evidences the value of interventions to support daily living. However, cleaning interventions alone, where home conditions are of concern, do not emerge as effective and cost-effective in the longer term. As described by one of the experts who reviewed this commissioning brief, a typical clearance can involve more than ten people in different roles (housing, contractors, community warden, cleaning, waste disposal, utilities etc.) and often costs approximately £5000. If this resource is spent on a person-centred approach, then the need to repeatedly use cleaning interventions can be prevented. Interventions should, therefore, take place as part of an integrated, multi-agency plan which addresses the concerns the person who is self-neglecting may have about their lives.
Identified research need
Further research is needed on self-neglect interventions focussing on understanding the individual’s perspective and building a trusting relationship that respects an individual’s rights, dignity, and their confidentiality, whilst enabling positive short and longer-term outcomes for all those concerned. Evaluation and implementation of assessment tools for self-neglect need to be comprehensive to ensure that professionals fully understand the nature of an individual’s capacity in respect of any decision-making. An understanding of what the potential barriers to implementation of assessment tools are, may lead to the effective management of self-neglect. Research focussing on multiagency approaches and what components enhance interdisciplinary working and co-ordination of work towards shared goals is required. At organisational level, research into providing greater clarity of roles and responsibilities to improve efficient multi-agency responses is needed. As described by an expert who reviewed this commissioning brief, consideration should be given in certain circumstances to information sharing of protocols and an understanding that General Data Protection Regulation (GDPR) allows the sharing of information. There also needs to be more trust of information gathered by different agencies to increase continuity of professional involvement and decrease repetitiveness for the concerned individual, whilst maintaining their confidentiality.
Research proposals should ideally be co-produced with national organisations and professional bodies, health and social care service commissioners, environmental agencies, fire service, housing providers, carers (including friends, families and neighbours) and service users. Links with health and social care planners and professional bodies is encouraged to facilitate the impact and scaling up of research findings to benefit the wider health and social care system.
The COVID-19 outbreak is having a significant impact both directly and indirectly across our Health and Social Care Systems. As this research will be conducted during the COVID-19 response and recovery stage, the following research questions will benefit from being framed within a real-life perspective, including a recognition of the impacts of the COVID-19 outbreak. Please build in flexibilities and consider how the COVID-19 response and recovery may affect your ability to conduct your research and the indirect impacts upon your research area if relevant. Applications that are directly related to Covid-19 are encouraged to consider applying to the COVID-19: Recovery and Learning funding opportunity.
The NIHR is committed to actively and openly supporting and promoting equality, diversity and inclusion (EDI). All NIHR applications need to demonstrate they have met the requirements of the Equality Act (2010) by embedding EDI throughout the research proposal, ensuring there is no discrimination across the following domains; age; disability; race, including colour, nationality, ethnic or national origin; religion or belief; sex; sexual orientation; gender reassignment; being married or in a civil partnership; being pregnant or on maternity leave. Applicants are expected to pay attention to populations in locations with greatest need, socioeconomic disadvantage, which have disproportionately less access to health and social care services and are of an under researched area.
The NIHR Health Services and Delivery Research (HSDR) programme supports applied research with the aim of improving health and social care services across the nation. In order to enhance the success of a proposal a clear theory of change and pathway to impact with links into the NHS and social care delivery process is suggested. It is useful to consider in your study design how outcomes could be scaled up to maximise impact and value for money across the NHS and social care– the focus is on applied research with tangible impacts on systems that improve the quality, accessibility and organisation of health and social care services. This also includes stakeholder engagement and the development of processes, tools and guidelines to strengthen workforce capacity. Further general information about the Health Services and Delivery Research Programme can be found here.
The programme is open to any methodology which is appropriate to answer the proposed research question. This must be fully explained and justified. Further information on the background to this call, including evidence gaps and relevant research is given in the call supporting information document.
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