Informing care through lived experiences: perspectives of consumers and carers regarding dietetic care for eating disorders in Australia

Abstract

Purpose Dietitians are important members of eating disorder treatment teams. Previous research indicates little is known about the experience of receiving nutrition care for eating disorders. This study aimed to explore the perspectives of consumers and carers regarding the care received from primary care dietitians for eating disorders. Methods This study qualitatively explored the perceptions of individuals aged ≥ 15 years, who (i) identified as having an eating disorder or (ii) had cared for someone with an eating disorder, and had received care from a dietitian in a primary care setting. Thematic analysis was used to identify themes from interview transcripts. Synthesized member checking was utilized to assess whether the identified themes resonated with participants’ experiences. Twenty-four individuals (21 consumers, 3 carers) participated in a semi-structured interview. Seventeen participants completed member checking and all supported the identified themes and subthemes. Results Three themes emerged inductively from the data: (1) valuing a person-centered approach to dietetic care; (2) the therapeutic alliance is central to engaging in dietetic care; and (3) sharing the complex journey. Conclusions This study advances the understanding of the aspects of dietetic care perceived as most helpful by consumers and carers. These insights highlight the importance of person-centeredness, empathy, trust and collaboration within eating disorder care. The findings can be used by dietitians and health professionals to inform practice. Further research is needed to understand how dietitians can be supported to provide optimal nutrition care to people and families impacted by eating disorders. Level of evidence V. Qualitative study.

“I Need Someone to Help Me Build Up My Strength”: A Meta-Synthesis of Lived Experience Perspectives on the Role and Value of a Dietitian in Eating Disorder Treatment

“…Participant age was reported in all but three studies [24][25][26] and ranged from 9 to 74. Four studies [26][27][28][29] included adolescent populations (i.e., under 18 years of age), three studies [26,27,29] explored parent or carer perspectives, and 11 studies [24,25,[30][31][32][33][34][35][36][37][38] considered only adult-client lived experience perspectives. Four studies [27,29,31,36] used mixed-sex samples, eight studies [24,28,30,[33][34][35][36]38] used female-only samples, one study [32] considered male-only samples, and two studies [25,26] did not report sex.…”

“…Logging eating and food diaries were cited by some individuals as importan to not only facilitate meal planning but also a reflective tool to facilitate change individual themselves as illustrated in the following extract: Seven of the papers identified that aspects of 'traditional' dietetic practice relating to nutrition and food were valued by individuals with lived ED experience [26][27][28][29][30]33,35].…”

“…"He [dietitian] was more balanced and helped me learn the difference between I guess (sic) healthy attitudes to wanting to eat well and exercise, versus the eating disorder thoughts wanting to be excessive with exercise and food restriction." (P19) [29] This extract highlights how nutrition education from a dietitian played a role in increasing understanding of how the individual's eating behaviours and nutritional intake impacted their health, as well as how these could be separated from their ED. This generated reasons for change that included to "feel better" (p.79) [33], and to take steps to shift their relationship with food to prevent further "hurting" (Mary) [30] the body and "losing muscle" (p.79) [33].…”

“…"There was nothing that I could do to help him, so I needed somebody else to be in charge" (p.488) [27] "I guess it was just having somebody else, who wasn't me, to reiterate the message of what was important. I saw the dietitian as a bit of an ally for me, to help me help her" (P18) [29] These extracts exemplify the sense of helplessness felt by carers whose efforts to encourage their loved ones to change their eating patterns recruited them into the sense that "there was nothing I could do to help him". In positioning the dietitian as "somebody else to be in charge" of their child's eating patterns, or "somebody else.…”

“…The importance of having a dietitian as part of a multidisciplinary team (MDT) in ED treatment surfaced substantially in six papers [25,26,29,33,36,38]. Subtheme 2(a): Enhancing Care through a Combined Front Some participants identified that they held "very strong belief[s]" about food and eating due to the ED.…”