Choosing the harder road: Naming the challenges for families in person-centred planning.

Person-centred planning (PCP) has underpinned disability service provision in many Western countries for the past 30 years. For many people with an intellectual disability, family members are central to this process and are important allies in facilitating positive change. This article presents findings from an evaluation of a family resourcing and capacity building project in New South Wales (NSW), Australia. Accounts from families show the merits of such work, but family efforts can be undermined by apathy and discrimination to disability from extended family, community and service providers. Asking families to be the primary support in PCP initiatives may potentially ignore the impacts of structural and psycho-emotional disablism on all family members. For families to support people with intellectual disability in PCP, there is a need to acknowledge and respond to the material, cultural and personal challenges for all family members in planning processes.

Relinquishing or taking control? Community perspectives on barriers and opportunities in advance care planning.

OBJECTIVE: This paper reports on the experiences and perspectives of community members in relation to advance healthcare directives and enduring power of attorney, including the factors that encourage or discourage engagement in advance care planning (ACP). METHODS; A qualitative methodology was used involving 26 in-depth telephone interviews with community members (mean age 66 years). The aims of the interview question were to gain an understanding of: (1) motivations for engaging in ACP; (2) barriers that prevent people from engaging in ACP; and (3) suggestions for promoting ACP. RESULTS: The findings suggest that: (1) community members lack knowledge about ACP; (2) forms appear inaccessible and complex; (3) community members avoid ACP due to fear, mistrust and concerns over control; and (4) there are misperceptions regarding the relevance of ACP based on age and health. CONCLUSIONS: There is unnecessary fear, avoidance and mistrust around ACP activities, largely resulting from misinformation. There is an undoubted need for greater education and support to be offered to individuals and their families regarding ACP, its benefits and its limitations.

It's just too hard! Australian health care practitioner perspectives on barriers to advance care planning.

This article presents findings from six focus groups with health care practitioners in an Australian hospital during 2010, which sought to elicit their perspectives on the barriers for people to plan their future health care should they become unwell. Such knowledge is invaluable in overcoming the barriers associated with advance care planning and enhancing the uptake of advance directives and the appointment of an enduring power of attorney for people of all ages. A person's rights to self-determination in health care, including decision making about their wishes for future care in the event they lose cognitive capacity, should not be overlooked against the backdrop of increasing pressure on health care systems. Findings suggest that multiple barriers exist, from practitioners' perspectives, which can be divided into three major categories, namely: patient-centred, practitioner-centred and system-centred barriers. Specifically, patient-centred barriers include lack of knowledge, accessibility concerns, the small 'window of opportunity' to discuss advance care planning, emotional reactions and avoidance when considering one's mortality, and demographic influences. At the practitioner level, barriers relate to a lack of knowledge and uncertainty around advance care planning processes. Systemically, legislative barriers (including a lack of a central registry and conflicting state legislation), procedural issues (particularly in relation to assessing cognitive capacity and making decisions ad hoc) and questions about delegation, roles and responsibilities further compound the barriers to advance care planning.

Preventing abuse in accommodation services: from procedural response to protective cultures.

This article reviews current approaches of disability accommodation services to addressing the abuse and neglect of people with intellectual disability who live in them. We review international literature and provide practice examples from accommodation services for people with intellectual disability in Australia to develop a framework of current research, policy and practice in this area. The results of this review show that dominant policy and practice approaches do not give adequate consideration to the prevention and protection of people from harm, focusing primarily on responding to individual instances of maltreatment. Managerial, compliance-based systems may be deflecting attention from recognizing and responding more effectively to abuse and neglect at individual, systemic and structural levels. The current dominant approach fails to develop a culture of prevention and protection for people with intellectual disability. Further, some systemic and structural preconditions are set which make abuse and neglect less likely to be prevented.

Crafting and retelling everyday lives--disabled people's contribution to bioethical concerns.

This commentary draws out themes from the narrative symposium on "living with the label "disability"" from the perspective of auto/biography and critical disability studies in the humanities. It notes the disconnect between the experiences discussed in the stories and the preoccupations of bioethicists. Referencing Rosemarie Garland-Thompson's recent work, it suggests that life stories by people usually described as "disabled" offer narrative, epistemic and ethical resources for bioethics. The commentary suggests that the symposium offers valuable conceptual tools and critiques of taken-for-granted terms like "dependency". It notes that these narrators do not un-problematically embrace the term "disability", but emphasize the need to redefine, strategically deploy or reject this term. Some accounts are explicitly critical of medical practitioners while others redefine health and wellbeing, emphasizing the need for reciprocity and respect for the knowledge of people with disability, including knowledge from their experience of "the variant body" (Leach Scully, 2008).

A qualitative study of the transition from hospital to home for individuals with acquired brain injury and their family caregivers.

PRIMARY OBJECTIVE: To explore the transition experiences from hospital to home of a purposive sample of individuals with acquired brain injury (ABI). RESEARCH DESIGN: Phenomenological, qualitative design. METHODS AND PROCEDURES: Semi-structured interviews were conducted with 13 individuals with ABI (mean time since discharge = 15.2 months) and 11 family caregivers. Each interview was recorded, transcribed verbatim and then inductively analyzed. RESULTS: Through the inductive analysis process, a summary coding framework was developed that included that following eight main categories: the hospital experience; the transition process; the role of family caregivers; post-discharge services; friendship networks and community involvement; meaningful activities and time management; physical and psychological wellbeing; and barriers and facilitators. CONCLUSIONS: The results of the study provide valuable insights into the lived experiences of participants and provide evidence to support the existence of a distinct transition phase within the ABI rehabilitation continuum; additional to and closely associated with the acute, post-acute and community integration phases.

Email-facilitated qualitative interviews with traumatic brain injury survivors: a new and accessible method.

PRIMARY OBJECTIVE: To trial the method of email-facilitated qualitative interviewing with people with traumatic brain injury (TBI). RESEARCH DESIGN: Qualitative semi-structured email-facilitated interviews. PROCEDURES: Nineteen people (17 severe diagnosis) with a TBI participated in email interviews. MAIN OUTCOMES AND RESULTS: Findings indicate that this method facilitates the participation of people with TBI in qualitative interviews. Advantages include increased time for reflection, composing answers and greater control of the interview setting. In addition, the data indicates that people with a TBI are capable of greater insight, reflection and humour than indicated by previous research. CONCLUSION: Findings indicate that new technologies may advance data collection methods for people with cognitive-linguistic impairments who face participation barriers in face-to-face interviews.