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Caregiver experiences of supporting adults with intellectual disabilities in pain.
J Appl Res Intellect Disabil 2015; 28(2):111-20JA

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.

Authors+Show Affiliations

Specialist Healthcare Team, Service for People who have a Learning Disability, South Essex Partnership University NHS Foundation Trust, Twinwoods Resource Centre, Clapham, Bedfordshire, UK.No affiliation info availableNo affiliation info availableNo affiliation info available

Pub Type(s)

Journal Article

Language

eng

PubMed ID

24909927

Citation

Findlay, Laura, et al. "Caregiver Experiences of Supporting Adults With Intellectual Disabilities in Pain." Journal of Applied Research in Intellectual Disabilities : JARID, vol. 28, no. 2, 2015, pp. 111-20.
Findlay L, Williams AC, Baum S, et al. Caregiver experiences of supporting adults with intellectual disabilities in pain. J Appl Res Intellect Disabil. 2015;28(2):111-20.
Findlay, L., Williams, A. C., Baum, S., & Scior, K. (2015). Caregiver experiences of supporting adults with intellectual disabilities in pain. Journal of Applied Research in Intellectual Disabilities : JARID, 28(2), pp. 111-20. doi:10.1111/jar.12109.
Findlay L, et al. Caregiver Experiences of Supporting Adults With Intellectual Disabilities in Pain. J Appl Res Intellect Disabil. 2015;28(2):111-20. PubMed PMID: 24909927.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Caregiver experiences of supporting adults with intellectual disabilities in pain. AU - Findlay,Laura, AU - Williams,Amanda C de C, AU - Baum,Sandra, AU - Scior,Katrina, Y1 - 2014/06/09/ PY - 2013/12/03/accepted PY - 2014/6/10/entrez PY - 2014/6/10/pubmed PY - 2015/11/17/medline KW - caregivers KW - experience KW - intellectual disabilities KW - pain KW - parents KW - service user KW - staff SP - 111 EP - 20 JF - Journal of applied research in intellectual disabilities : JARID JO - J Appl Res Intellect Disabil VL - 28 IS - 2 N2 - 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. SN - 1468-3148 UR - https://www.unboundmedicine.com/medline/citation/24909927/Caregiver_experiences_of_supporting_adults_with_intellectual_disabilities_in_pain_ L2 - https://doi.org/10.1111/jar.12109 DB - PRIME DP - Unbound Medicine ER -