The concept of participation, introduced through models such as the International Classification of Functioning, Disability and Health, has become increasingly important in health and social care. However, it has not been consistently defined or operationalised, and there is very limited research into participation in the context of advanced age and disability. This article reports a study which explored participation from the perspectives of communityliving people aged over 80 years with physical rehabilitation needs. Using a grounded theory methodology, 11 participants aged 81 to 96 years were recruited from a National Health Service Trust in the United Kingdom. The main finding was that participation was experienced as the enacting of values. Values provided the motivation for specific ways of participating in life, guided actions and behaviours, and were the means through which participation was interpreted. Commonly enacted values were: connecting with others; maintaining autonomy; affirming abilities; doing the best you can; being useful; maintaining self-identity, and pursuing interests. A process was evident whereby participation was challenged by deteriorating health and losses and the participants adapted (or not) to overcome these challenges. To promote participation in advanced age, health and social care policy and practice must consider the values important to older people. Interventions should be congruent with these values and promote strategies through which they can be enacted.
BackgroundPost amputation, the complication of phantom limb pain (PLP) is prevalent and difficult to manage. This study aimed to determine whether it was feasible and acceptable to undertake a definitive multicentred randomised controlled trial assessing the effectiveness of acupuncture for treating lower limb amputees with PLP.MethodsA mixed-methods embedded design, including a randomised controlled trial and semistructured interviews, was undertaken. A total of 15 participants with PLP were randomly assigned to receive either eight pragmatic Traditional Chinese Medicine acupuncture treatments and usual care or usual care alone over 4 weeks. Outcome measures were completed at baseline, weekly throughout the study and at 1 month post completion of the study and included: a numerical pain-rating scale, the Short-Form McGill Pain Questionnaire 2, the EQ-5D-5 L, the Hospital Anxiety and Depression Scale, the Perceived Stress Scale 10-item, the Insomnia Severity Index, and the Patient Global Impression of Change. Post completion of the trial, participants in the acupuncture group were interviewed about their experience. Feasibility-specific data were also collected.ResultsOf 24 amputees meeting the study inclusion criteria, 15 agreed to participate (recruitment rate 62.50 %). Qualitatively, acupuncture was perceived to be beneficial and effective. Quantitatively, acupuncture demonstrated clinically meaningful change in average pain intensity (raw change = 2.69) and worst pain intensity (raw change = 4.00). Feasibility-specific data identified that before undertaking a definitive trial, recruitment, practitioner adherence to the acupuncture protocol, completion of outcome measures at 1 month follow-up and blinding should be addressed. Appropriate outcome measures were identified for use in a definitive trial. Data were generated for future sample size calculations (effect size 0.64). Allowing for a 20 % dropout rate, a sample size of 85 participants per group would be needed in a future definitive trial.ConclusionsA future definitive trial may be possible if the areas identified in this study are addressed. As acupuncture may be effective at treating PLP, and as this feasibility study suggests that a definitive trial may be possible, a multicentred trial with adequate sample size and blinding is now needed.Trial registrationClinicalTrials.gov Identifier: NCT02126436, registered on 4 September 2014.Electronic supplementary materialThe online version of this article (doi:10.1186/s13063-016-1639-z) contains supplementary material, which is available to authorized users.
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