Helping the most vulnerable out of the poverty trap and reducing inequality: Policies, strategies, and services for individuals with Autism Spectrum Disorder, including intellectual and neurodevelopmental disabilities: BASE Project Report (Volume 2) NILT Survey Autism Module

The primary purpose of the BASE Project was to establish how to help individuals with Autism Spectrum Disorder out of poverty by promoting social inclusion. In order to achieve this, a range of methodologies were utilised that aimed to provide a baseline against which the effect of the Autism Act (NI) 2011 and the associated Autism Strategy (2013-2020) and Action Plans can be measured. The BASE Project is reported in 5 volumes. Volume 2 reports on the analysis of the autism module of the Northern Ireland Life and Times (NILT) Survey that assessed public awareness, attitudes, knowledge, and projected behaviours with regard to individuals with ASD (all primary data and technical reports are available at www.ark.ac.uk/nilt/).

The NILT (2012) survey first ever autism module (n=1204) offered a baseline against which the impact of new autism legislation, policies, and strategies can be measured. Key findings:

• 82% awareness: Most people in Northern Ireland are aware of autism (n=989).
• 50% of all participants knew someone with autism personally (n=606).

Of those who were aware of autism:
• 19% had a close family member with autism (n=186), and/or a friends/acquaintance (n=296), and/or a work colleague (n=79) with autism.
• Autism awareness was particularly low for those from ethnic minorities and those with no internet access.
• Awareness of autism specific legislation was low (20%).
• Good levels of knowledge about autism strengths and challenges, slight tendency to overestimate the occurrence of special talents.
• Prevalence of autism was underestimated (62% thought autism was much less prevalent than official figures or did not know).
• Fairly accurate perception about causes of autism, i.e., not caused by poor parenting (84%).
• Strong support for evidence-based behavioural interventions (77%), but confusion about interventions that are not evidence-based (64%).
• Strong positive attitudes towards children and adults in social, educational and employment settings.
• Autism not viewed as necessarily ‘lifelong’ (58%); support for independent living (78%), e.g., driving a car (83%).
• More business for employers who employ people with autism (12%).
• Strong support for families caring rather than residential care (64%).
• Confusion about service responsibility: education (26%) health (33%) or both (28%).

Given increasing prevalence rates of ASD it is important that the general population is aware of autism and able to respond responsibly to the associated strengths and challenges. The results of the NILT (2012) first ever autism module show that the general public was well aware of autism, had positive attitudes, and was relatively knowledgeable about the issues faced by individuals and families affected directly. However, there was a lack of clarity about responsibility for effective service delivery. The NILT results show that a shift in focus is necessary from ‘awareness raising campaigns’ to an approach that delivers clarity with regard to intervention and accountability.

A Comparison of Support Needs Between Rural and Urban Family Caregivers Providing Palliative Care

The present study examined the support needs for urban and rural family caregivers of a palliative family member using a cross-sectional telephone survey in northeastern Ontario, Canada (n = 140; 70 urban, 70 rural). Support needs identified as most important by both the groups were informational. Rural caregivers reported greater unmet needs in tangible support (P =.01). No differences were observed between the groups for emotional or informational support needs (P =.25 and P =.35, respectively). Rural and urban caregivers perceived care for care recipients as accessible (mean accessibility score 1.9, standard deviation [SD] = 0.09 and 1.7, SD = 0.7, respectively, P =.20); the majority indicated that when needed, services were easily and quickly obtained. Although there are similarities in the formal care experiences, rural caregivers experience greater unmet needs in receiving support for instrumental activities. © The Author(s) 2013.

Are family physician visits and continuity of care associated with acute care use at end-of-life? A population-based cohort study of homecare cancer patients

Background: Previous end-of-life cancer research has shown an association between increased family physician continuity of care and reduced use of acute care services; however, it did not focus on a homecare population or control for homecare nursing.

Aim: Among end-of-life homecare cancer patients, to investigate the association of family physician continuity with location of death and hospital and emergency department visits in the last 2 weeks of life while controlling for nursing hours.

Design: Retrospective population-based cohort study.

Setting/participants: Cancer patients with ≥1 family physician visit in 2006 from Ontario, Canada. Family physician continuity of care was assessed using two measures: Modified Usual Provider of Care score and visits/week. Its association with location of death and hospital and emergency department visits in the last 2 weeks of life was examined using logistic regression.

Results: Of 9467 patients identified, the Modified Usual Provider of Care score demonstrated a dose-response relationship with increasing continuity associated with decreased odds of hospital death and visiting the hospital and emergency department in the last 2 weeks of life. More family physician visits/week were associated with lower odds of an emergency department visit in the last 2 weeks of life and hospital death, except for patients with greater than 4 visits/week, where they had increased odds of hospitalizations and hospital deaths.

Conclusions: These results demonstrate an association between increased family physician continuity of care and decreased odds of several acute care outcomes in late life, controlling for homecare nursing and other covariates.©The Author(s) 2013 Reprints and permissions sagepub.co.uk/journalsPermissions.nav.

Comparing the experiences of rural and urban family caregivers of the terminally ill

Introduction: There are many challenges in delivering rural health services; this is particularly true for the delivery of palliative care. Previous work has identified consistent themes around end-of-life care, including caregiver burden in providing care, the importance of informal care networks and barriers imposed by geography. Despite these well-known barriers, few studies have explored the experience of palliative care in rural settings. The purpose of the present study was to compare the experiences of rural family caregivers actively providing end-of-life care to the experiences of their urban counterparts. Methods: Caregivers' perceived health status, the experience of burden in caregiving, assessment of social supports and the pattern of formal care used by the terminally ill were explored using a consistent and standardized measurement approach. A cross-sectional survey study was conducted with 100 informal caregivers (44 rural, 56 urban) actively providing care to a terminally ill patient recruited from a publicly funded community agency located in northeastern Ontario, Canada. The telephone-based survey included questions assessing: (i) caregiver perceived burden (14-item instrument based on the Caregiver's Burden Scale in End-of-Life Care [CBS-EOLC]); (ii) perceived social support (modified version of the Multidimensional Scale of Perceived Social Support [MSPSS] consisting of 12 items); and (iii) functional status of the care recipient (assessed using the Eastern Collaborative Oncology Group performance scale). Results: Rural and urban caregivers were providing care to recipients with similar functional status; the majority of care recipients were either capable of all self-care or experiencing some limitation in self-care. No group differences were observed for caregiver perceived burden: both rural and urban caregivers reported low levels of burden (CBS-EOLC score of 26.5 [SD=8.1] and 25.0 [SD=9.2], respectively; p=0.41). Urban and rural caregivers also reported similarly high levels of social support (mean MSPSS total score of 4.3 [SD=0.7] and 4.1 [SD=0.8], respectively; p=0.40). Although caregivers across both settings reported using a comparable number of services (rural 4.8 [SD=1.9] vs urban 4.5 [SD=1.8]; p=0.39), the types of services used differed. Rural caregivers reported greater use of family physicians (65.1% vs 40.7%; p=0.02), emergency room visits (31.8% vs 13.0%; p=0.02) and pharmacy services (95.3% vs 70.4%; p=0.002), while urban caregivers reported greater use of caregiver respite services (29.6% vs 11.6%; p=0.03). Conclusion: Through the use of standardized tools, this study explored the experiences of rural informal family caregivers providing palliative care in contrast to the experiences of their urban counterparts. The results of the present study suggest that while there are commonalities to the caregiving experience regardless of setting, key differences also exist. Thus, location is a factor to be considered when implementing palliative care programs and services. © K Brazil, S Kaasalainen, A Williams, C Rodriguez, 2013.

Building Family Emotional Resilience: Understanding the needs of families with children attending Special Schools in Northern Ireland

This report outlines a small-scale consultation with families of children attending Special Schools, in order to understand their unmet needs in terms of family emotional wellbeing. The research was commissioned by a consortium of organisations that provide emotional wellbeing services:
1. Niamh (Northern Ireland Association for Mental Health);
2. Barnardo’s NI ‘Time 4 Me’ school counselling service; and
3. TakeTen Limited.

Family Focused Practice in Mental Health Care: An Integrative Review

While mental health services are increasingly encouraged to engage in family-focused practice, it is a nebulous and poorly understood term. The aim of this paper was to examine and synthesize evidence on the concept and scope of family-focused practice in adult and child and youth mental health care settings. An integrative literature review method was used. Medline, Embase, CINAHL, PsycInfo and Proquest electronic databases were systematically searched forabstracts published in English between 1994-2014. Data were extracted and constant comparative analysis conducted with 40 included articles. Family-focused practice was conceptualised variously depending on who was included in the „family‟, whether the focus was family of origin or family of procreation, and the context of practice. As a finding of the review, six core and inter-related family-focused practices were identified: family care planning andgoal-setting; liaison between families and services; instrumental, emotional and social support; assessment; psychoeducation; and a coordinated system of care between families and services. While family is a troubled concept, „family‟ as defined by its members forms a basis for practice that is oriented to providing a „whole of family‟ approach to care. In order to strengthen familymembers‟ wellbeing and improve their individual and collective outcomes, key principles and practices of family-focused practice are recommended for clinicians and policy makers across mental health settings.

Supervisor Continuity or Co-Location: Which Matters in Residency Education? Findings From a Qualitative Study of Remote Supervisor Family Physicians in Australia and Canada

Purpose: Changes to health care systems andworking hours have fragmentedresidents’ clinical experiences withpotentially negative effects ontheir development as professionals.Investigation of off-site supervision,which has been implemented in isolatedrural practice, could reveal importantbut less overt components of residencyeducation. 

Method: Insights from sociocultural learningtheory and work-based learning provideda theoretical framework. In 2011–2012,16 family physicians in Australia andCanada were asked in-depth how theyremotely supervised residents’ workand learning, and for their reflectionson this experience. The verbatiminterview transcripts and researchers’memos formed the data set. Templateanalysis produced a description andinterpretation of remote supervision. 

Results: Thirteen Australian family physiciansfrom five states and one territory, andthree Canadians from one province,participated. The main themes werehow remoteness changed the dynamicsof care and supervision; the importanceof ongoing, holistic, nonhierarchical,supportive supervisory relationships; andthat residents learned “clinical courage”through responsibility for patients’ careover time. Distance required supervisorsto articulate and pass on their expertiseto residents but made monitoringdifficult. Supervisory continuityencouraged residents to build on pastexperiences and confront deficiencies. 

Conclusions: Remote supervision enabled residents todevelop as clinicians and professionals.This questions the supremacy of co-locationas an organizing principle forresidency education. Future specialists maybenefit from programs that give themongoing and increasing responsibilityfor a group of patients and supportive.

The impact of organisational factors and government policy on psychiatric nurses family focused practice with parents who have mental illness, their dependent children and families in Ireland

Government policy and organizational factors influence family focused practice in adult mental health services. However, how these aspects shape psychiatric nurses’ practice with parents who have mental illness, their dependent children and families is less well understood. Drawing on the findings of a qualitative study, this article explores the way in which Irish policy and organizational factors might influence psychiatric nurses’ family focused practice, and whether (and how) family focused practice might be further promoted. A purposive sample of 14 psychiatric nurses from eight mental health services completed semi-structured interviews in 2013. The analysis was inductive and presented as thematic networks. Both groups described how policies and organizational culture enabled and/or hindered family focused practice, with differences between community and acute participants seen. The need to develop national and international policies along with practices to embed information and support regarding parenting into ongoing care is implicated in this study.

Benefits and resource implications of family meetings for hospitalized palliative care patients: research protocol.

BACKGROUND:
Palliative care focuses on supporting patients diagnosed with advanced, incurable disease; it is 'family centered', with the patient and their family (the unit of care) being core to all its endeavours. However, approximately 30-50% of carers experience psychological distress which is typically under recognised and consequently not addressed. Family meetings (FM) are recommended as a means whereby health professionals, together with family carers and patients discuss psychosocial issues and plan care; however there is minimal empirical research to determine the net effect of these meetings and the resources required to implement them systematically. The aims of this study were to evaluate: (1) if family carers of hospitalised patients with advanced disease (referred to a specialist palliative care in-patient setting or palliative care consultancy service) who receive a FM report significantly lower psychological distress (primary outcome), fewer unmet needs, increased quality of life and feel more prepared for the caregiving role; (2) if patients who receive the FM experience appropriate quality of end-of-life care, as demonstrated by fewer hospital admissions, fewer emergency department presentations, fewer intensive care unit hours, less chemotherapy treatment (in last 30 days of life), and higher likelihood of death in the place of their choice and access to supportive care services; (3) the optimal time point to deliver FM and; (4) to determine the cost-benefit and resource implications of implementing FM meetings into routine practice.
METHODS:
Cluster type trial design with two way randomization for aims 1-3 and health economic modeling and qualitative interviews with health for professionals for aim 4.
DISCUSSION:
The research will determine whether FMs have positive practical and psychological impacts on the family, impacts on health service usage, and financial benefits to the health care sector. This study will also provide clear guidance on appropriate timing in the disease/care trajectory to provide a family meeting.

Worker, workplace or families: What influences family focused practices in adult mental health?

Introduction: Family focused practice is thought to lead to positive outcomes for all family members. However, there are multiple barriers and enablers in adult mental health services to practitioners undertaking these actions.
Aim: The aim of this study was to examine the relative importance of worker, workforce and family factors to predict family focused practices (FFPs) in adult mental health services.
Method: Three hundred and seven adult mental health workers completed a 45 items family focused practice measure of 16 family focused practices.
Thesis: It was found that worker skill and knowledge about family work and an ability to assess the degree of parental insight into the child’s connections to other family members and the community were important predictors of FFP, along with the closely related-worker confidence. While aspects of the worker, workplace and family each contribute to FFPs, this study highlighted the importance of worker skill, knowledge and confidence as central issues for adult mental health workers.
Implications for practice: Study implications include the need for training in specific FFPs, the provision of time to engage with clients on parenting issues and the need 5 to ensure that there are adequate services for workers to refer family members to

The Family Model - A transgenerational approach to mental health in families: personal, clinical, educational, research, systems and policy perspectives

The Family Model – A transgenerational approach to mental health in families This workshop will provide an overview on The Family Model (TFM) and its use in promoting and facilitating a trans­generational family focus in Mental Health services, over the past 10­ - 15 years. Each of the speakers will address a different perspective, including service user/consumer, clinical practice, education & training, research and policy. Adrian Falkov (chair) will provide an overview of TFM to set the scene and a ‘policy to practice’ perspective, based on use of TFM in Australia. Author: Heide Lloyd. The Family Model ­ A personal (consumer/patient) perspective | United Kingdom Heide will provide a description of her experiences as a child, adult, parent & grandparent, using TFM as the structure around which to ‘weave’ her story and demonstrate how TFM has assisted her in understanding the impact of symptoms on her & family and how she has used it in her management of symptoms and recovery (personal perspective). The Family Model ­ Education & training perspective ­ Marie Diggins | United Kingdom PhD Bente Weimand | Norway Authors: ­ Marie Diggins | United Kingdom PhD Bente Weimand | Norway This combined (UK & Norwegian) presentation will cover historical background to TFM and its use in eLearning (the Social Care Institute for Excellence)and a number of other UK initiatives, together with a description of the postgraduate masters course at the University Oslo/Akershus, using TFM. The Family Model ­ A research perspective PhD Anne Grant | Northern Ireland Author: PhD Anne Grant | Ireland Anne Grant will describe how she used TFM as the theoretical framework for her PhD looking at family focused (nursing) practice in Ireland. The Family Model ­ A service systems perspective ­ Mary Donaghy | Northern Ireland Authors: PhD Adrian Falkov | Australia ­ Mary Donaghy | N Ireland Mary Donaghy will discuss how TFM has been used to support & facilitate a cross service ‘whole of system’ change program in Belfast (NI) to achieve improved family focused practice. She will demonstrate its utility in achieving a broader approach to service design, delivery and evaluation.

Psychiatric Nurses’ Practice with Parents who have Mental Illness, their Children and Families, within Adult Mental Health Services in Ireland

Introduction: While it is recommended that mental health professionals engage in family focused practice (FFP), there is limited understanding regarding psychiatric nurses’ practice with parents who have mental illness, their children and families in adult mental health services.

Methods: This study utilized a mixed methods approach to measure the extent of psychiatric nurses’ family focused practice and factors that predicted it. It also sought to explore the nature and scope of high scoring psychiatric nurses’ FFP and factors that affected their capacity to engage in FFP. Three hundred and forty three psychiatric nurses in 12 mental health services throughout Ireland completed the Family Focused Mental Health Practice Questionnaire (FFMHPQ). Fourteen nurses who achieved high scores on the FFMHPQ also participated in semi-structured interviews.

Results: Whilst the majority of nurses were not family focused a substantial minority were. High scoring nurses’ practice was complex and multifaceted, comprising various family focused activities, principles and processes. Nurses’ capacity to engage in FFP was determined by their knowledge and skills, working in community settings and own parenting experience.