Nursing people with intellectual disability and dementia experiencing pain: An integrative review

Dillane, Imelda; Doody, Owen

doi:10.1111/jocn.14834

Cited by 22 publications

(17 citation statements)

References 49 publications

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“…A further study of ED encounters by Fry, Arendts, Chenoweth, and MacGregor (2015) also identified the older person with a cognitive impairment as likely to experience an even longer delay receiving analgesia than those older persons who were cognitively intact. An integrated review by Dillane and Doody (2019) on the older person with intellectual disability and advanced dementia identified often their pain is also unrecognised.…”

Section: Introductionmentioning

confidence: 99%

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

Harmon

Summons

Higgins

2019

Journal of Clinical Nursing

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Aims and objectives To present an ethnographic insight into the older hospitalised person (those aged over 65 years) perceptions and experiences of pain care provision by nurses in acute care. Background Pain care provision by nurses remains less than optimal for the older hospitalised person despite numerous evidence‐based guidelines. There is a paucity of research providing input from the experiences of the older hospitalised person in relation to their perspectives of pain care provision by nurses in acute care. Pain care research needs more involvement from those older persons with documented diagnoses of dementia, delirium or cognitive impairment, and intellectual disabilities and those in their end stage of palliation. Design A focused ethnographic study. The consolidated criteria for reporting qualitative research (COREQ) were used to report the findings of this study. Methods A focused ethnographic study was conducted in 8 acute care units within 2 large tertiary referral hospitals on the east coast of Australia. Consisting of semi‐structured interviews (n = 12) of cognitively intact older persons (11 hr). Twenty‐three (23) semi‐structured interviews with nine (9) RN participants (12 hr and 38 min). Participant observation period totalled 1,041 hr. Results The older persons’ experiences of receiving pain care were based on a formulaic assessment process focusing on intensity of pain and pain management options provided often lacked their input. The older persons often did not perceive their pain care provision as being of benefit to themselves. The nurses lacked insight and understanding on the nature of pain for the older person. Conclusion Understanding was gained into how the older persons’ pain care was hampered due to the lack of appropriate, and meaningful pain care provision and provides insight into why the older hospitalised person continues to experience a less than optimal experience. Relevance to clinical practice Older hospitalised persons can gain continuity of pain care when nurses negotiate with them to repattern or restructure their nursing routines for pain care provision. Older people need inclusion into pain care decisions. All vulnerable older persons require nurses to use an evidence‐based pain assessment tool.

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Section: Introductionmentioning

confidence: 99%

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

Harmon

Summons

Higgins

2019

Journal of Clinical Nursing

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“…For all but two participants, the use of HR monitoring led to some change in caregivers' understanding of the participant. 17,27,28 HR monitoring may improve this situation.…”

Section: Change Of Care Practice Following Hr Monitoringmentioning

confidence: 99%

“…[8][9][10] In the majority of cases, the condition is evident early in life. Approximately 5% of persons with ID have severe ID (IQ: [20][21][22][23][24][25][26][27][28][29][30][31][32][33][34] or profound ID (IQ < 20). 11,12 These patients are entirely dependent on their caregivers, but intellectual shortcomings limit their ability to communicate with them.…”

Section: Introductionmentioning

confidence: 99%

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Increased heart rate as a signal of acute distress in non-communicating persons with intellectual disability. A real-world study.

Kildal

Stadskleiv

Boysen

et al. 2020

Preprint

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Intellectual disability (ID) affects approximately 1% of the population. Some patients with severe or profound ID are essentially non-communicating and therefore risk experiencing pain and distress without being able to notify their caregivers, which is a major health issue. This study aimed to see if heart rate (HR) monitoring could reveal whether non-communicating persons with ID experience acute pain or distress in their daily lives. We monitored HR in 14 non-communicating participants with ID in their daily environment to see if specific situations were associated with increased HR. We defined increased HR as being > 1 standard deviation above the daily mean and lasting > 5 seconds. In 11 out of 14 participants, increased HR indicated pain or distress in situations that were not previously suspected to be stressful, e.g. passive stretching of spastic limbs or being transported in patient lifts. Increased HR suggesting joy was detected in three participants (during car rides, movies). In some situations that were previously suspected to be stressful, absence of HR increase suggested absence of pain or distress. We conclude that HR monitoring may identify acute pain and distress in non-communicating persons with ID, allowing for improved health care for this patient group.

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“…Due to frequent co-morbid conditions that involve pain, pain is highly prevalent in persons with dementia and with other diseases that cause cognitive impairment or difficulty expressing pain, such as intellectual disability [1][2][3][4]. Various dementia types may differently affect the way pain is being perceived (threshold and intensity), processed, and communicated, but typically about half of persons with dementia are in pain [1,5,6].…”

Section: Introductionmentioning

confidence: 99%

Probable Pain on the Pain Assessment in Impaired Cognition (PAIC15) Instrument: Assessing Sensitivity and Specificity of Cut-Offs against Three Standards

et al. 2021

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Observational pain scales can help to identify pain in persons with dementia who may have difficulty expressing pain verbally. The Pain Assessment in Impaired Cognition-15 (PAIC15) covers 15 items that indicate pain, but it is unclear how probable pain is, for each summed score (range 0–45). We aimed to determine sensitivity and specificity of cut-offs for probable pain on the PAIC15 against three standards: (1) self-report when able, (2) the established Pain Assessment in Advanced Dementia (PAINAD) cut-off of 2, and (3) observer’s overall estimate based on a series of systematic observations. We used data of 238 nursing home residents with dementia who were observed by their physician in training or nursing staff in the context of an evidence-based medicine (EBM) training study, with re-assessment after 2 months in 137 residents. The area under the ROC curve was excellent against the PAINAD cut-off (≥0.8) but acceptable or less than acceptable for the other two standards. Across standards and criteria for optimal sensitivity and specificity, PAIC15 scores of 3 and higher represent possible pain for screening in practice, with sensitivity and specificity against self-report in the 0.5 to 0.7 range. While sensitivity for screening in practice may be too low, a cut-off of 4 is reasonable to indicate probable pain in research.

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Nursing people with intellectual disability and dementia experiencing pain: An integrative review

Cited by 22 publications

References 49 publications

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

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

Increased heart rate as a signal of acute distress in non-communicating persons with intellectual disability. A real-world study.

Probable Pain on the Pain Assessment in Impaired Cognition (PAIC15) Instrument: Assessing Sensitivity and Specificity of Cut-Offs against Three Standards

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