RESUMEN
BACKGROUND: Lesbian, gay, bisexual and/or trans (LGBT) people have higher risk of certain life-limiting illnesses and unmet needs in advanced illness and bereavement. ACCESSCare is the first national study to examine in depth the experiences of LGBT people facing advanced illness. AIM: To explore health-care experiences of LGBT people facing advanced illness to elicit views regarding sharing identity (sexual orientation/gender history), accessing services, discrimination/exclusion and best-practice examples. DESIGN: Semi-structured in-depth qualitative interviews analysed using thematic analysis. SETTING/PARTICIPANTS: In total, 40 LGBT people from across the United Kingdom facing advanced illness: cancer ( n = 21), non-cancer ( n = 16) and both a cancer and a non-cancer conditions ( n = 3). RESULTS: In total, five main themes emerged: (1) person-centred care needs that may require additional/different consideration for LGBT people (including different social support structures and additional legal concerns), (2) service level or interactional (created in the consultation) barriers/stressors (including heteronormative assumptions and homophobic/transphobic behaviours), (3) invisible barriers/stressors (including the historical context of pathology/criminalisation, fears and experiences of discrimination) and (4) service level or interactional facilitators (including acknowledging and including partners in critical discussions). These all shape (5) individuals' preferences for disclosing identity. Prior experiences of discrimination or violence, in response to disclosure, were carried into future care interactions and heightened with the frailty of advanced illness. CONCLUSION: Despite recent legislative change, experiences of discrimination and exclusion in health care persist for LGBT people. Ten recommendations, for health-care professionals and services/institutions, are made from the data. These are simple, low cost and offer potential gains in access to, and outcomes of, care for LGBT people.
Asunto(s)
Accesibilidad a los Servicios de Salud/organización & administración , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Disparidades en Atención de Salud/organización & administración , Disparidades en Atención de Salud/estadística & datos numéricos , Minorías Sexuales y de Género/estadística & datos numéricos , Enfermo Terminal/estadística & datos numéricos , Personas Transgénero/estadística & datos numéricos , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Reino Unido , Adulto JovenRESUMEN
BACKGROUND: People with intellectual disabilities often present with unique challenges that make it more difficult to meet their palliative care needs. AIM: To define consensus norms for palliative care of people with intellectual disabilities in Europe. DESIGN: Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for Palliative Care reviewed and approved the final version. SETTING AND PARTICIPANTS: Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members' networks. RESULTS: A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents' comments, several items were modified and one item was deleted. CONCLUSION: This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice.
Asunto(s)
Consenso , Discapacidad Intelectual , Cuidados Paliativos , Comités Consultivos , Técnica Delphi , Europa (Continente) , Humanos , Calidad de la Atención de Salud , Encuestas y Cuestionarios , Enfermo TerminalRESUMEN
Around 1-3% of the world's population has intellectual disabilities (Mash and Wolfe, 2004). Communication difficulties are a major obstacle in providing effective palliative care to this group. Problems may arise due to a lack of comprehension and a lack of verbal skills, affecting assessment and the provision of psychosocial support. This paper maps the communication difficulties experienced by people with intellectual disabilities within a palliative care setting, drawing on several research studies carried out by the authors. These include the time-consuming nature of effective communication, and difficulties around breaking bad news. The paper explores the ways in which people with intellectual disabilities may (mis)understand verbal information. Strategies for managing communication difficulties are outlined, including ways to use clear, unambiguous language. The authors conclude that the ability to communicate effectively with people with intellectual disabilities is a useful skill that will benefit all patients.
Asunto(s)
Barreras de Comunicación , Discapacidad Intelectual/psicología , Neoplasias/psicología , Cuidados Paliativos/métodos , Personas con Discapacidades Mentales/psicología , Adulto , Comprensión , Femenino , Humanos , Discapacidad Intelectual/complicaciones , Discapacidad Intelectual/enfermería , Masculino , Neoplasias/etiología , Comunicación no Verbal , Evaluación en Enfermería , Cuidados Paliativos/psicología , Educación del Paciente como Asunto , Semántica , Apoyo Social , Factores de TiempoRESUMEN
The end-of-life care model Preferred Place of Care and the philosophy known as person-centred planning both aim to make patient choices and views central to any service delivery. This article compares the two strategies.