Evaluation of a group based cognitive behavioural therapy programme for menstrual pain management in young women with intellectual disabilities: protocol for a mixed methods controlled clinical trial

Abstract

BackgroundMenstrual pain which is severe enough to impact on daily activities is very common amongst menstruating females. Research suggests that menstrual pain which impacts on daily functioning may be even more prevalent amongst those with intellectual disabilities. Despite this, little research attention has focused on pain management programmes for those with intellectual disabilities.The aims of this pilot study were to develop and evaluate a theory-based cognitive behavioural therapy (CBT) programme for menstrual pain management in young women with intellectual disabilities.Methods/DesignThe study utilised a mixed methods controlled clinical trial to evaluate elements from a CBT programme called Feeling Better (McGuire & McManus, 2010). The Feeling Better programme is a modular, manualised intervention designed for people with an intellectual disability and their carers. The programme was delivered to 36 young women aged 12 – 30 years who have a Mild - Moderate Intellectual Disability, split between two conditions. The treatment group received the Feeling Better intervention and the control group received treatment as usual. To evaluate the effectiveness of the programme, measures were taken of key pain variables including impact, knowledge, self-efficacy and coping. Process evaluation was conducted to examine which elements of the programme were most successful in promoting change.DiscussionParticipants in the intervention group were expected to report the use of a greater number of coping strategies and have greater knowledge of pain management strategies following participation in the intervention and at three month follow-up, when compared to control group participants. A significant advantage of the study was the use of mixed methods and inclusion of process evaluation to determine which elements of a cognitive behavioural therapy programme work best for individuals with intellectual disabilities.Trial registrationCurrent Controlled Trials ISRCTN75567759

Current evidence for the identification and management of premenstrual syndrome in women with intellectual disabilities: a systematic review

“…Ten papers were identified for final qualitative analysis and extracted characteristics are summarised in Table I. In total, 17 screened papers were excluded for the following reasons: literature review article (n ¼ 2) (Albanese and Hopper, 2017;Jeffery et al, 2013), approach not in line with modern practice (n ¼ 2) (Huovinen, 1993;Kaminer et al, 1988), abstract only (n ¼ 1), (Ibralic et al, 2010), limited relevance for management of PMS (n ¼ 12) (Arvio et al, 2009;Backeljauw et al, 2004;Chou and Lu, 2009;Dickson et al, 2018;Greenwood and Wilkinson, 2013;Kennedy et al, 2014;Pikora et al, 2014;Roxburgh and West, 1973;Sinnema et al, 2011;Tracy et al, 2016;Wilkinson and Ceretto, 2008;Wingfield et al, 1994).…”

“…Current UK guidelines recommend that cognitive behavioural therapy (CBT) should routinely be offered to patients presenting with severe PMS (Green et al, 2017). There have been successful reports of modified CBT being an effective treatment of depression, anxiety and anger management in patients with mild-moderate ID (Busse et al, 2009;Kennedy et al, 2014). This has been explored by Kennedy et al (2014) in the management of menstrual pain in women with ID.…”

“…There have been successful reports of modified CBT being an effective treatment of depression, anxiety and anger management in patients with mild-moderate ID (Busse et al, 2009;Kennedy et al, 2014). This has been explored by Kennedy et al (2014) in the management of menstrual pain in women with ID. Specifically, they adapted the McGuire and McManus ( 2010) "Feeling Better" programme, which is designed for patients with ID experiencing chronic pain.…”

Pain perception in people with Down syndrome: a synthesis of clinical and experimental research

“…In a case series, the authors of the treatment manual reported some preliminary evidence of the effectiveness of the programme (McManus and McGuire, 2014 ) but noted that more research is needed, including controlled clinical trials. Subsequently, a trial protocol has been registered (Kennedy et al, 2014 ) to evaluate the effectiveness of the Feeling Better programme for management of menstrual pain in young women with an intellectual disability. Treatment outcomes have not yet been reported but will be important as the first controlled trial to evaluate psychological management of pain for people with an intellectual disability.…”

Improving pain‐related communication in children with autism spectrum disorder and intellectual disability

“…7,12 To date, only two studies have examined psychological interventions focused on pain in individuals with a diagnosis of ID, both using cognitive behavioral therapy to teach self-management strategies for chronic pain. 13,14 These studies included individuals who were high functioning, with good verbal communication skills, and did not involve people with ASD and/or moderate ID. There is an ongoing need for research on interventions for people with more severe cognitive impairments and other complex presentations.…”