Caregiver Experiences of Supporting Adults with Intellectual Disabilities in Pain

Abstract

Background Caregivers have an intimate knowledge of the individuals they care for and are therefore an important source of information on pain experiences. They are often relied upon to recognize pain‐related behaviours and report them, but little is known as to how they experience their role. Methods Information was collected from 11 caregivers using semi‐structured interviews about their experiences of caring for adults with intellectual disabilities who were suspected or definitely in pain. Transcripts were analysed using Interpretative Phenomenological Analysis. Results Six superordinate themes were identified from participants' experiences: suffering in silence; searching for meaning to explain the complaint; knowledge and skills needed to recognize and manage pain; perceptions of the pain experience; acting to try and reduce pain; and the emotional impact of pain. Conclusions There seems an art to detect pain using existing skills and knowledge of the individual's ways of expressing pain. Despite best efforts, recognizing and treating pain was experienced as complex and ambiguous. Some caregivers described a negative emotional impact and dissatisfaction with the management of pain by health care services.

Experiences of the older hospitalised person on nursing pain care: An ethnographic insight

“…There is the position statement with clinical practice recommendations for pain assessment in the patient unable to self-report by Herr et al (2011) and a procedural pain management guideline by Czarnecki et al (2011). Findlay, Williams, Baum, andScior (2015) notes a person with an intellectual disability will often display their pain in ways which can be subtle, and their expressions of pain will be variable and often idiosyncratic (Doody & Bailey, 2019). The International Association for the Study of Pain (2019b) recommends for the older person with an intellectual disability and/ or diagnosis of advanced dementia; then, the use of an appropriate pain assessment tool in conjunction with previously recorded pain baseline observations will be required and a multidimensional approach with continuous reassessment with inclusion of family/caregivers (Findlay et al, 2015).…”

El proceso de duelo de personas con discapacidad intelectual

“…Por otro lado, también se considera necesario reducir el posible sesgo en las respuestas derivado de los autoinformes. Para ello, sería factible, entre otras alternativas, analizar el grado de convergencia de las respuestas obtenidas y aportadas por los profesionales con las derivadas de otros familiares próximos a los participantes, ya que suponen una importante fuente de información acerca de los cambios emocionales y comportamentales experimentados por las personas con DI (Findlay, Williams, Baum y Scior, 2015). El hecho de disponer de tal información, no solo en el momento del duelo, sino incluso antes de sufrirlo, será de gran relevancia para la prevención de duelos patológicos o complicados.…”

Access to primary and community health-care services for people 16 years and over with intellectual disabilities: a mapping and targeted systematic review

“…Of these, three dealt with general practice, 44,45,48 three dealt with a range of primary care services, 36,37,49 three dealt with carers working at residential or supported living homes [33][34][35]43 and two dealt with formal and informal carers of people with ID in residential or family homes. 38,39 The other three studies dealt with audiology services, 42 cervical and cancer screening 40 and sexual health. 41 The majority of the studies included in this cluster had a qualitative design.…”

“…There were 16 papers reporting 14 different studies in this cluster. Among these studies, health needs were identified by the person with ID, 34,36,38,41,44 family carers, 49,114 paid carers 33,35,39,40,42,48,73,114,115 and health professionals. 37,45,48 Identifying health need depends on some knowledge of potential risks to health.…”

“…Carers needed an in-depth knowledge of the client to be able to recognise and interpret health-related changes in behaviour, whether acute or long term; recognising when someone is unwell or in pain is an important first step towards accessing primary care services. Five papers 33,34,[37][38][39] reporting three studies explored pain recognition and management. One study was an audit exploring residential staff members' beliefs about pain, strategies for recognising and managing pain 33 and experiences of when people with ID had experienced pain.…”