District nurses' experiences with involuntary treatment in dementia care at home: a qualitative descriptive study.

BACKGROUND: Research shows that half of person(s) living with dementia (PLWD) receive care which they resist and/or have not given consent to, defined as involuntary treatment. District nurses play a key role in providing this care. Knowledge about how district nurses experience involuntary treatment is lacking. Therefore, the aim of this study was to describe the experiences of district nurses who used involuntary treatment for PLWD at home. METHODS: A qualitative descriptive design using semi-structured interviews. Sixteen district nurses with experience in involuntary treatment for PLWD were recruited through purposive sampling. Data were analysed using the Qualitative Analysis Guide of Leuven. RESULTS: District nurses' experiences with involuntary treatment were influenced by their involvement in the decision-making process. When they were involved, they considered involuntary treatment use to be appropriate care. However, at the moment that involuntary treatment use was started, district nurses were worried that its use was unjust since they wished to respect the wishes of the PLWD. Eventually, district nurses found, from a professional perspective, that involuntary treatment use was necessary, and that safety outweighed the autonomy of the PLWD. District nurses experienced dealing with this dilemma as stressful, due to conflicting values. If district nurses were not involved in the decision-making process regarding the use of involuntary treatment, family caregivers generally decided on its use. Often, district nurses perceived this request as inappropriate dementia care and they first tried to create a dialogue with the family caregivers to reach a compromise. However, in most cases, family caregivers stood by their request and the district nurse still provided involuntary treatment and found this difficult to tolerate. CONCLUSIONS: Our results show that district nurses experience involuntary treatment use as stressful due to dealing with obverse values of safety versus autonomy. To prevent involuntary treatment use and obverse values, we need to increase their ethical awareness, communication skills, knowledge and skills with person-centred care so they can deal with situations that can evolve into involuntary treatment use in a person-centred manner.

District nurses' attitudes towards involuntary treatment in dementia care at home: A cross-sectional study.

One in two persons living with dementia (PLWD) at home receive care which they resist to and/or have not given consent to, defined as involuntary treatment. District nurses play a key role in the use of involuntary treatment. However, little is known how their attitudes and opinions influence the use of involuntary treatment. This cross-sectional study aims to investigate the attitudes of district nurses towards the use of involuntary treatment in dementia care at home, determinants and their opinion about its restrictiveness and discomfort. Results show that district nurses perceive involuntary treatment as regular part of nursing care, having neither positive nor negative attitude towards its appropriateness. They consider involuntary treatment usage as moderately restrictive to PLWD and feel moderately uncomfortable when using it. These findings underscore the need to increase the awareness of district nurses regarding the negative consequences of involuntary treatment use to PLWD at home.

Involuntary treatment in dementia care at home: Results from the Netherlands and Belgium.

AIMS AND OBJECTIVES: To gain insight into the request, use and associated factors of involuntary treatment in people with dementia (PwD) receiving professional home care in the Netherlands and Belgium. BACKGROUND: Most of the PwD remain living at home as long as possible. Due to complex care needs, this can result in an increased risk for care provided against the wishes of the client and/or to which the client resists, referred to as involuntary treatment. DESIGN: Secondary data analyses of two cross-sectional surveys. METHODS: Dementia case managers and district nurses filled in a questionnaire for each PwD in their caseload. This study included data of 627 PwD receiving professional home care in the Netherlands and 217 in Belgium. The same methodology (questionnaire and variables) was used in both samples. Descriptive statistics and multi-level logistic regression analyses were used to analyse the data. The study adhered to the STROBE checklist. RESULTS: More than half of the PwD (50.7%) living at home received involuntary treatment (Belgium 68.2% and the Netherlands 44.7%). Nonconsensual care (82.7%) was the most common, followed by psychotropic medication (40.7%) and physical restraints (18.5%). Involuntary treatment use was associated with living alone, greater ADL dependency, lower cognitive ability, higher family caregiver burden and receiving home care in Belgium versus the Netherlands. Involuntary treatment was most often requested by family caregivers. CONCLUSIONS: Involuntary treatment is often used in PwD, which is in line with previous findings indicating dementia as a risk factor for involuntary treatment use. More research is needed to gain insight into variations in prevalence across other countries, which factors influence these differences and what countries can learn from each other regarding prevention of involuntary treatment. RELEVANCE TO CLINICAL PRACTICE: To provide person-centred care, it is important to study ways to prevent involuntary treatment in PwD and to stimulate dialogue between professional and family caregivers for alternative interventions.

Prevention and reduction of involuntary treatment at home: A feasibility study of the PRITAH intervention.

Sometimes care is provided to a cognitively impaired person against the person's will, referred to as involuntary treatment. We developed the PRITAH intervention, aimed at prevention and reduction of involuntary treatment at home. PRITAH consists of a policy discouraging involuntary treatment, workshops, coaching by a specialized nurse and alternative interventions. A feasibility study was conducted including 30 professional caregivers. Feasibility was assessed by attendance lists (reach), a logbook (dose delivered and fidelity), evaluation questionnaires and focus group interviews (dose received, satisfaction & barriers). The workshops and coach were positively evaluated and the average attendance rate was 73%. Participants gained more awareness and knowledge and received practical tips and advice to prevent involuntary treatment. Implementation of the intervention was feasible with minor deviations from protocol. Recommendations for improvement included more emphasis on involvement of family caregivers and general practitioners and development of an extensive guideline to comply with the policy.

The use of involuntary treatment among older adults with cognitive impairment receiving nursing care at home: A cross-sectional study.

BACKGROUND: Respect for inherent dignity and individual autonomy is a basic principle in health care. However, several studies indicate that care-dependent older adults with a cognitive impairment, receiving nursing care at home, are at risk of care without their consent, referred to as 'involuntary treatment'. This includes the application of physical restraints (e.g. measures to prevent leaving bed or chair), psychotropic drugs (e.g. antidepressants, sedatives) and non-consensual care (e.g. forced hygiene, hiding medication). Research about involuntary treatment is scarce and only recently first studies have been conducted. OBJECTIVE: To investigate 1) the prevalence of involuntary treatment, 2) associated factors and 3) who requests and applies their use among older adults with cognitive impairment receiving nursing care at home. DESIGN: Cross- sectional study. SETTING: Homes of older adults receiving nursing care from district nurses in the eastern part of Belgium. PARTICIPANTS: Data were collected from 1194 randomly selected older adults with cognitive impairments receiving nursing care at home (mean age 83; 67% female). METHOD: District nurses completed an online questionnaire for each selected older adult in their caseload. Involuntary treatment was measured using a questionnaire identifying use of physical restraints, psychotropic medication and non-consensual care. In addition who requests involuntary treatment and who applies it was examined. Older adults sociodemographic characteristics, diagnosis of dementia, activities of daily living (ADL), cognitive status and informal caregiver burden were assessed. RESULTS: Involuntary treatment was used in 52% (95%; CI 49-55) of the total sample. Non-consensual care was most often used (73%; 95% CI 70-77), followed by psychotropic drugs (43%; 95% CI 39-47) and physical restraints (38%; 95% CI 35-42). The use of involuntary treatment was associated with dependency for activities of daily life (OR 1.50; 95% CI 1.33-1.69), cognitive impairment (1.39; 95% CI 1.25-1.55), informal caregiver burden (OR 1.05; 95% CI 1.01-1.10) and aging (OR 0.97; 95% CI 0.95-0.99). Informal caregivers (71%), followed by general practitioners (47%) most frequently requested the use of involuntary treatment, and nurses (81%) mostly applied it. CONCLUSION: In Belgium, involuntary treatment is often used in older adults with a cognitive impairment receiving nursing care at home. The implication of this study for clinical practice is that it confirms the need to develop an approach to prevent and reduce it. Further research is needed to plan and develop such an approach, in order to prevent and reduce the use of involuntary treatment.