A qualitative study exploring why adults with intellectual disabilities and obesity want to lose weight and views of their carers

Appearance is a greater motivator for weight loss in adults with obesity and ID than health and there is a lack of agreement between adults with ID and their carers

This study agrees with others [16, 17] that health is a priority for carers. Carers’ perspectives of a weight loss intervention for adults with ID [17], revealed a theme of “carers perceptions of participants health”, including “reasons to lose weight.” Carers reported health, mobility and psychosocial factors as reasons why their client should lose weight. These mirrored a previous study [16] where carers were found to recognise the health benefits of healthier lifestyles for adults with ID, more readily than self image or quality of life benefits.

Although it has been suggested [11, 17] that, ascertaining views of carers of adults with ID is a reasonable way to reflect experiences of this population group, this study has demonstrated a lack of agreement between adults with ID and their carers. The difference in the wording of the question to the participant (asking why they would want to lose weight), compared to that asked of the carer (why they felt the participant should lose weight) was necessary as the carer would have heard the participant’s answer before they responded. This wording difference is unlikely to have contributed to the lack of agreement.

Carers have a pivotal relationship with the person they support and impact on compliance to many activities, including health interventions such as weight management [17]. Spanos et al (2012) found that discussing health benefits of weight loss, although a strong motivator for carers, was unsuccessful at motivating the participant. It was suggested that motivational goals are pertinent to each individual and may be more related to day to day priorities rather than health per se [17]. This study extends this knowledge, demonstrating that appearance and clothes are important motivating factors for adults with ID, particularly for women and adults with BMIs of ≥50, possibly reflecting the difficulties in finding clothes in larger sizes. “Appearance / clothes” and “fitness / activity / mobility” were the only reasons given by those with severe or profound ID, perhaps reflecting the immediate discomfort that these effects of weight give them, compared to the relatively abstract and more complicated notion of health.

Although health was not a strong motivating factor for adults with ID overall in this study, the frequency of citing “health”, increased with age, perhaps reflecting the greater health problems, medical consultations and medications associated with increasing age. Health was also cited more by those with milder ID, possibly due to them having a greater understanding of the link between weight and health and of their carer’s views prior to the question being asked. The men studied by Hankey et al (2001), were motivated primarily by health [3] and it is possible that the difference in motivation between adults with ID and those without is due to the degree of understanding of the link between weight and health.

These findings suggest carer’s awareness of their client’s motivating factors is poor and that views of the adult with ID differ from their own. Using “appearance” and “clothes” as topics of conversation surrounding weight loss and healthy lifestyles, could help initiate motivation to make lifestyle changes.

Motivating factors for weight loss differ between adults with obesity and ID, and those without ID

Previous studies exploring reasons that people without ID choose to lose weight have found “health” to be the most frequently reported [6, 8, 21–25]. Medical triggers, a recent health problem and physical symptoms resulting from excess body weight were found to stimulate behaviour change [8, 23], achieve greater initial weight loss and result in reduced weight re-gain [2, 6]. In successful weight losers, defined as having lost 10 % of their body weight and having kept it off for 3 months, a health anxiety prompted by a new health problem or diagnosis, was found to be their primary reason for wanting to lose weight, followed by the advice of a health professional and lastly appearance [10]. The main difference between reasons cited in the lower BMI range in adults with ID (30–39.9 kg/m²) in this study and men without ID of the same BMI [3] was that health followed by fitness was the most frequent response in men without ID. In this study, there were 8 men with a BMI of 30–39.9 kg/m² and between them provided 8 responses, equally split between fitness / activity / mobility, appearance / clothes, emotional / happiness and health.

Men [6, 8, 25] and particularly older men between 40 and 55 years old [3] seem from the literature to be more likely than women to cite health or medical triggers as a reason to intentionally lose weight. Two studies [21, 24] found no gender differences in reasons to lose weight, though the latter study examined reasons in a specific group of those diagnosed with binge eating disorder.

Appearance as a reason for weight loss was mentioned as a primary reason in women [8, 25], in younger men [3] and younger adults generally [2] and a secondary reasons in others [3, 8, 10, 22–24]. Overall, it appears that appearance is a greater motivator for younger people to lose weight [2, 3, 26] and it is not until the age of thirty five [2] or forty years old [3] that people want to lose weight for health reasons.

Emotional reasons such as “mood” or “psychological reasons” were mentioned infrequently in the papers identified [22, 23].

It is debateable whether having health or appearance as a motivating factor for weight loss is more beneficial in terms of long term weight loss maintenance. Roberts et al (1999) suggest that, over time, a health anxiety which may have initiated the behaviour change for weight loss may be replaced in part by the positive rewards of perceived improved appearance and fitness, enabling the person to sustain any behaviour change and thus sustain weight loss long term [10]. However, Lawrence et al (2001) warns against using short term weight loss triggers such as a forthcoming social event as the behaviour changes are harder to maintain once the event has passed [8].

It is uncommon for men without ID to cite “for others” as a reason for wanting to lose weight [3] and this was also the case for the adults with ID in this study. In this study, only those in the lower BMI range of 30–39 kg/m² cited “for others” as a reason for seeking weight loss and this lack of internal motivation in some could possibly reflect a lack of awareness, among the less obese individuals with ID, of the need to lose weight.

It is necessary and possible to ascertain views of adults with mild to moderate ID

With the emphasis on adults with ID having an active role in their lifestyle choices, goal setting and actions [17], it is becoming increasingly clear that we need a greater understanding of their views in order to inform future service provision. The literature suggests that obtaining views from adults with ID, although important in order to understand their experiences, views and aspirations [11, 15, 20], can be problematic [11, 14]. However, Beail and Williams (2014), conclude that, “If we want to hear the voices of people who have ID, then we need appropriate ways to do this” [20].

It has been said that, “The emphasis on research should be on overcoming the barriers that impede the involvement of inarticulate subjects instead of highlighting the difficulties they present,” [14]. Suggestions to facilitate communication and obtaining of reliable responses include using images, taking adequate time [15], considering the pros and cons of open versus closed questions, taking note of non-narrative communication and exploring different modes of questioning [14]. It may be the case that, for this patient group, the researcher needs to use different methods of questioning and conversation for different individuals and different methods compared to those used in qualitative research in adults without ID. “Loaning words” for example would be seen as putting words into a person’s mouth in research with adults without ID but may be necessary as part of options and general conversation for adults in this patient group [14].

Limitations

Although all individuals participating in the weight management intervention study [12] were asked their views, those with severe and profound ID were less able to provide an answer.

There was no significant association between reasons for weight loss and gender, age, ID and BMI and this could be partly due to the small sample size. The fact that 11 people could not express a reason, meant that a potential sample of 50 individuals with ID was reduced to 39.

There was no deeper exploration as to why a particular response was given and this could have led to a more thorough understanding of the reason for seeking weight loss. Using resources such as “talking mats” [27] and taking more time over the question, could lead to gaining further insight into the data.

Future work

Whether reasons for weight loss impact on weight outcomes in obese adults with ID is of interest given previous studies that have found such relationships in obese adults without ID [2, 6–10], as is the effect of participant–carer discrepancies. It would be beneficial to determine techniques to understand views of individuals with severe and profound ID.