Carers' perspectives of a weight loss intervention for adults with intellectual disabilities and obesity: a qualitative study

Spanos, Dimitrios; Hankey, Catherine; Boyle, S.; Koshy, P.; Macmillan, Susan; Matthews, Lynsay; Miller, Susan A.; Penpraze, Victoria; Pert, Carol; Robinson, Nicola; Melville, Craig

doi:10.1111/j.1365-2788.2011.01530.x

Cited by 43 publications

(66 citation statements)

References 42 publications

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“…Participants who had study partners that reported more hassles had higher weights at the end of the 18-month study, and those who had study partners who reported higher self-efficacy had greater weight loss at the end of the study. This is in agreement with previous research (17, 20, 34) that suggests a successful weight management intervention needs to reduce barriers for not only the participants but also for their caregivers. Spanos et al (20) suggests that, in order to reduce caregiver barriers, weight management interventions need to incorporate small, established staff teams that can follow the weight loss plan consistently and to establish better communication and cooperation between the staff within the same support team.…”

Section: Discussionsupporting

confidence: 93%

“…While multiple study partners did not impact weight loss during the entire 18-month study, this finding still suggests that adults with IDD may benefit from having a consistent caregiver during a weight management intervention. Similarly, Spanos et al (20) reported that participants who are in homes with multiple staff would benefit from having consistent shift patterns and more one-on-one time allocated with the person they support.…”

Section: Discussionmentioning

confidence: 99%

“…However, caregivers experience many barriers to providing support for weight management to adults with IDD. Spanos et al (20) identified staffing issues (e.g. constant turnover and lack of communication between staff members) and lack of caregiver knowledge on diet and physical activity as the two greatest barriers to providing successful weight management support.…”

Section: Introductionmentioning

confidence: 99%

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Caregivers' effect on weight management in adults with intellectual and developmental disabilities

Ptomey

Gibson

Lee

et al. 2017

Disability and Health Journal

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Introduction Caregivers of adults with IDD often play a large role in the ability of adults with IDD to lose weight. Objective The purpose of this study was to determine to examine the effects of the caregivers’ perceived burdens and self-efficacy and their relationship to an individual (family member or paid staff) on weight changes across an weight management intervention for adults with IDD. Methods Overweight/obese adults with mild to moderate IDD, along with assigned caregivers who served as their study partner, were randomized to an 18-month weight management intervention. The living environment and caregiver relationship were assessed at baseline. Caregivers completed questionnaires regarding perceived hassles, uplifts, and self-efficacy in helping the participant follow a weight management intervention. Results 147 adults with IDD (~57% women and ~16% minorities) were included in data analysis. After 18 months, there were no differences in weight loss between participants who had a family member as their study partner and those who had a paid assistant as their study partner (−5.5 ± 5.2 % vs. −5.6 ± 5.3% p = 0.16). However, paid assistants reported more hassles with following the diet intervention at 6 months (p < 0.05). Participants who had a paid assistant as their study partner were more likely to have multiple study partners during the study, which was correlated with smaller weight loss. Conclusion While caregivers are important for weight management of adults with IDD, the caregiver’s relationship to the participant does not affect weight change in an intervention.

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Section: Discussionsupporting

confidence: 93%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Caregivers' effect on weight management in adults with intellectual and developmental disabilities

Ptomey

Gibson

Lee

et al. 2017

Disability and Health Journal

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“…The interview data will be used to inform future outcome and intervention studies. Carer involvement has been shown to be important in lifestyle behaviour change for adults with intellectual disabilities [28, 53]. Interviews with family members will allow us to gain insight into the influence that family can have on lifestyle behaviours in young people with intellectual disabilities.…”

Section: Methodsmentioning

confidence: 99%

“…In addition, families and carers play an important role in the lifestyle behaviours of an individual’s intellectual disabilities. Research has suggested that parents and carers’ own lack of motivation or time to be active can be a barrier to supporting an individual with intellectual disabilities to participate in physical activity [28]. Further, recent research [29] suggests that some paid carers and family members who were supporting individuals with intellectual disabilities to take part in a walking intervention rewarded walking and good behaviour with sweet treats and fizzy drinks.…”

Section: Introductionmentioning

confidence: 99%

‘Moving on and feeling good’: a feasibility study to explore the lifestyle behaviours of young adults with intellectual disabilities as they transition from school to adulthood—a study protocol

Mitchell

Jahoda

Hankey

et al. 2016

Pilot Feasibility Stud

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BackgroundThe transition from adolescence to adulthood is a ‘high-risk’ period for weight gain in the general population. There is speculation that this may also be a risk period for adults with intellectual disabilities; however, there has been no research which has monitored change in health indicators. Since adults with intellectual disabilities have higher rates of obesity and engage in more sedentary behaviour and less physical activity than the general population, there is a need to understand more about the lifestyle behaviours of this population during the transition to adulthood. This protocol paper will provide details of the moving on and feeling good feasibility study, designed for young people with intellectual disabilities.Methods/designA multi-point recruitment strategy will be used to recruit 30 participants with a mild-moderate level of intellectual disability. The aim of the feasibility study is to examine the feasibility of recruitment, participant retention and the measurement of relevant health behaviour outcomes. The study will assess the feasibility of monitoring weight, diet and physical activity levels in adolescents over a 12-month transitional period from school to adult life. This mixed method study will provide insight into the lives of young people with intellectual disabilities and will examine the use of Walker et al.’s social-ecological approach to promote self-determination specific to lifestyle behaviours, during this transition period. Baseline data will be collected during the final year of school, with follow-up data collection at 6 and 12 months. Anthropometric (weight, height, waist and hip circumference), objective physical activity measures (7-day accelerometer wear) and dietary and choice measures will be collected at each time point to assess the feasibility of measuring diet patterns, food frequency, physical activity and BMI. Furthermore, ten participants will be selected for short semi-structured scoping interviews at baseline and 12-month follow-up, to gain information on psychological, social and environmental factors which might affect behaviour change.DiscussionThe outcomes from the feasibility study will aid the development and piloting of a sufficiently powered randomised controlled trial. This would allow us to evaluate the effectiveness and sustainability of a lifestyle behaviour intervention, over a 5-year transition period.Electronic supplementary materialThe online version of this article (doi:10.1186/s40814-015-0044-9) contains supplementary material, which is available to authorized users.

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Remote delivery of weight management for adults with intellectual and developmental disabilities: Rationale and design for a 24 month randomized trial

Ptomey

Washburn

Mayo

et al. 2018

Contemporary Clinical Trials

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Adults with intellectual and developmental disabilities (IDD) represent an underserved segment of the US population with a high prevalence of obesity and limited options for weight management. Previous research has demonstrated clinically meaningful weight loss of 7% of total body weight in in adults with IDD using an enhanced Stop Light Diet (eSLD) in combination with monthly at-home face-to-face (FTF) behavioral sessions, and a recommendation for increased physical activity. However, the time and cost associated with FTF delivery (travel + sessions) limits the potential for scaling and implementation and suggests the need for the evaluation of less costly and burdensome strategies for intervention delivery. Therefore, we will conduct a 24-mo. randomized trial to compare a weight management intervention (6 mos. weight loss, 12 mos. maintenance, 6 mos. no-contact follow-up) delivered to 120 overweight/obese adults with IDD in their home, either remotely (RD) using video conferencing on a tablet computer, or during FTF visits. Our primary aim is whether RD is non-inferior to FTF for weight loss (0-6 mos.). Secondarily, we will compare the RD and FTF groups on mean weight loss, the proportion of participants who achieve clinically meaningful weight loss, and changes in quality of life across 24 months. We will also conduct cost analysis, cost-effectiveness, and contingent valuation analyses to compare the RD and FTF groups.

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Carers' perspectives of a weight loss intervention for adults with intellectual disabilities and obesity: a qualitative study

Abstract: This study identified specific facilitators and barriers experienced by carers during the process of supporting obese adults with ID to lose weight. Future research could utilise these findings to inform appropriate and effective weight management interventions for individuals with ID.

Cited by 43 publications

References 42 publications

Caregivers' effect on weight management in adults with intellectual and developmental disabilities

Caregivers' effect on weight management in adults with intellectual and developmental disabilities

‘Moving on and feeling good’: a feasibility study to explore the lifestyle behaviours of young adults with intellectual disabilities as they transition from school to adulthood—a study protocol

Remote delivery of weight management for adults with intellectual and developmental disabilities: Rationale and design for a 24 month randomized trial

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Carers' perspectives of a weight loss intervention for adults with intellectual disabilities and obesity: a qualitative study

Abstract: This study identified specific facilitators and barriers experienced by carers during the process of supporting obese adults with ID to lose weight. Future research could utilise these findings to inform appropriate and effective weight management interventions for individuals with ID.

Cited by 43 publications

References 42 publications

Caregivers' effect on weight management in adults with intellectual and developmental disabilities

Caregivers' effect on weight management in adults with intellectual and developmental disabilities

‘Moving on and feeling good’: a feasibility study to explore the lifestyle behaviours of young adults with intellectual disabilities as they transition from school to adulthood—a study protocol

Remote delivery of weight management for adults with intellectual and developmental disabilities: Rationale and design for a 24 month randomized trial

Contact Info

Product

Resources

About

Remote delivery of weight management for adults with intellectual and developmental disabilities: Rationale and design for a 24 month randomized trial