Access to palliative care for homeless people: complex lives, complex care.

BACKGROUND: People experiencing homelessness often encounter progressive incurable somatic diseases in combination with psychiatric and psychosocial problems, and many need palliative care at the end of their lives. Little is known about how palliative care for this group can be started in good time and provided optimally. The objective of this paper is to give insight into the extent people experiencing homelessness have access to good palliative care. METHODS: Qualitative in-depth interviews were held to reconstruct the cases of 19 people experiencing homelessness in the Netherlands. Eight cases concerned persons being in the palliative phase (using the surprise question) and the other 11 cases concerned persons recently died after a period of ill health due to somatic illness. We used purposive sampling until data saturation was reached. The total number of interviews was 52. All interviews were transcribed verbatim and analysed inductively. RESULTS: Three key themes were: 'late access', 'capricious trajectory' and 'complex care'. The first key theme refers to the often delayed start of palliative care, because of the difficulties in recognizing the need for palliative care, the ambivalence of people experiencing homelessness about accepting palliative care, and the lack of facilities with specific expertise in palliative care for them. The second key theme refers to the illness trajectory, which is often capricious because of the challenging behaviour of people experiencing homelessness, an unpredictable disease process and a system not being able to accommodate or meet their needs. The third key theme refers to the complexity of their care with regard to pain and symptom control, psychosocial and spiritual aspects, and the social network. CONCLUSIONS: The care for in the palliative phase does not satisfy the core requirements of palliative care since there are bottlenecks regarding timely identification, the social network, and the assessment and management of physical symptoms and psychosocial and spiritual care needs. Education in palliative care of outreach professionals, training staff in shelters in the provision of palliative care, and building a network of palliative care specialists for people experiencing homelessness.

Evaluation of an interaction-skills training for reducing the burden of family caregivers of patients with severe mental illness: a pre-posttest design.

BACKGROUND: Family members who care for patients with severe mental illness experience emotional distress and report a higher incidence of mental illness than those in the general population. They report feeling inadequately prepared to provide the necessary practical and emotional support for these patients. The MAT training, an Interaction-Skills Training program (IST) for caregivers, was developed to meet those needs. This study used a single-arm pretest-posttest design to examine the impact of the training on caregivers' sense of competence (self-efficacy) and burden. METHODS: One hundred family caregivers recruited from three mental health institutions participated in the training. Burden was assessed using the Involvement Evaluation Questionnaire, and self-efficacy using the Self-Efficacy Questionnaire. Analysis of variance with repeated measures was used to investigate whether participation in the training changed the level of family caregivers' burden and self-efficacy. Pearson's correlation was used to examine the relationships between self-efficacy and burden. RESULTS: Our results indicate that, after the training, self-efficacy increased significantly over time (p < 0.001) and that burden decreased significantly (p < 0.001). However, the results could not demonstrate the expected association between an increase of self-efficacy and decrease of burden. Caregivers expressed high appreciation for the training. CONCLUSIONS: After following the IST program, family caregivers of patients with severe mental illness experienced a greater sense of competence and a significant decrease in burden. The training was greatly appreciated and satisfied caregivers' need to acquire the skills required in complex caregiving situations. TRIAL REGISTRATION: This study was retrospectively registered (14/01/2018) in the ISRCTN registry with study ID ISRCTN44495131 .

Systematic review of self-management in patients with schizophrenia: psychometric assessment of tools, levels of self-management and associated factors.

AIMS: The aim of this study was to provide an overview of existing knowledge about self-management assessment tools used in patients with schizophrenia, and levels of self-management and associated factors in these patients. BACKGROUND: Self-management empowers patients with chronic conditions to manage their illness and psychosocial consequences. With respect to patients with schizophrenia, knowledge concerning self-management is scarce. A systematic review of existing literature focusing on self-management in these patients may contribute to further research programming and practice development. DESIGN: A systematic review of the literature. DATA SOURCES: A systematic literature search was conducted in March 2015 in Medline, Embase, PsycINFO and CINAHL. REVIEW METHODS: Twelve articles were included. Data were extracted and categorized following the objectives of this review: (1) self-management assessment tools and their psychometric properties; (2) level of self-management; and (3) factors associated with self-management in patients with schizophrenia. RESULTS: The PIH scale, the PAM-MH and the IMR scale were used to assess self-management. The overall psychometric quality of these instruments showed to be fair to poor. The level of self-management in patients with schizophrenia is comparable with other mental health conditions, higher than general population and lower than patients with physical health conditions. Several factors (e.g. sense of coherence, recovery and hope) were found to be associated. CONCLUSION: Further efforts are needed to increase the methodological quality of psychometric research on self-management assessment tools. More insight in the level of self-management and associated factors may enhance the development of future interventions.

Perceived need for care and health care utilization among depressed and anxious patients with and without suicidal ideation.

BACKGROUND: Information is scarce concerning the perceived needs and the amount of health-care utilization of persons with suicidal ideation (SI) compared to those without SI. AIMS: To describe the needs and health care use of persons with and without SI and to investigate whether these differences are associated with the severity of the axis-I symptomatology. METHOD: Data were obtained from 1,699 respondents with a depressive and/or anxiety disorder who participated in the Netherlands Study of Depression and Anxiety. Persons with and without SI were distinguished. Outcome variables were perceived needs and health-care utilization. We used multivariate regression in two models: (1) adjusted only for sociodemographic variables and (2) adjusted additionally for severity of axis-I symptomatology. RESULTS: Persons with SI had higher odds for both unmet and met needs in almost all domains and made more intensive use of mental-health care. Differences in needs and health-care utilization of persons with and without SI were strongly associated with severity of axis I symptomatology. CONCLUSIONS: Our results validate previous findings about perceived needs and health-care use of persons with SI. The results also suggest that suicidal persons are more seriously ill, and that they need more professional care, dedication, and specialized expertise than anxious and depressed persons without SI, especially in the domains of information and referral.