The main aim of this doctoral dissertation was to investigate how patients, parents and siblings experienced family-based inpatient treatment for adolescent anorexia nervosa. Gaining insight into service users’ personal and subjective experiences with treatment represents a valuable source of knowledge and helps inform future service delivery. The study reports from an understudied treatment setting and the dissertation should be useful for a) treatment providers working to optimize inpatient care, b) future patients and families, and c) generating new ideas for future research.
Family-based inpatient treatment for adolescent anorexia nervosa is a novel treatment approach designed to better support the whole family during an admission. Throughout treatment, parents, and sometimes siblings, are admitted together with the young person diagnosed with a severe form of anorexia nervosa. Several families receive treatment together. Although there is some research supporting the effectiveness of an inpatient family-based treatment approach, we know less about how service users experience treatment.
Family-based inpatient treatment represents a very complex treatment situation and treatment is reserved for complex and severe cases. Treatment is theoretically and practically informed by outpatient family-based treatment for anorexia nervosa, a manual-based treatment known for prioritizing collaborating with the young person’s parents.
Although not adhering strictly to a family-based treatment manual, inpatient staff is guided by five core features that characterize evidence-based outpatient family-based treatment. These features include: 1) the therapists hold an agnostic view of the eating disorder’s potential causative factors, 2) the therapists takes on a consultative, non-authoritarian stance during treatment, 3) parents are charged with responsibilities and empowered to bring about changes in meal management and aid recovery, 4) the eating disorder is rhetorically separated from the young person, and “externalized” as a means of alleviating guilt and shame, and to aid collaborations against the eating disorder’s influences on the young person’s mind and behaviors and the family, and 5) treatment is symptom-focused and predominantly oriented towards the here and now and developing future solutions. By intensifying collaborations with the family during admissions, one generally aims to co-create a treatment situation that enables more lasting change processes, as compared with admitting the young person alone.
The present research took place within a tertiary specialized inpatient eating disorder unit, providing a family-based inpatient treatment approach since 2008. The four original studies comprise part of a larger research project, known as “The Follow-up Study: ED outcome and family members’ experiences 1-7 years after family-based inpatient treatment”. Investigating user experiences involved conducting in-person, semi-structured, post-treatment interviews of former patients, parents and siblings. The research design is largely descriptive, inductive and exploratory. Transcribed interviews for all 61 study participants (N=37 former patients, N=14 parents, N=10 siblings) were analyzed by applying the pragmatic framework known as, Thematic Analysis. Papers 1-3 provide views and perspectives from the position of young persons with lived experience of anorexia nervosa and family-based inpatient treatment, and Paper 4 includes perspectives from parents and siblings of patients.
The first paper explores young patients’ perspectives on taking part in the family-based inpatient treatment program. Four main themes were developed. Results show that taking part in family-based inpatient treatment could be viewed as double-edged, a treatment both “Enabling new ways of understanding and relating,” but also “Enhancing or maintaining negative power dynamics.” Further, findings showed that the event of being admitted, and oscillating between the hospital unit and the home environment during planned leaves represents highly “Vulnerable transitions,” with the potential of both aiding change and nurturing the eating disorder. Findings also captured how the adolescents reflected upon the importance of sibling involvement during admissions, “Sibling relationships and different ways of involvement.”
The second paper explores how young persons with lived experience from a family-based inpatient treatment setting viewed therapeutic aspects related to staff-patient collaborations and staff-related behaviors. It demonstrates how former inpatients prefer treatment to be flexibly tailored and experienced as collaborative. Eight subthemes constituting two main themes were constructed: 1) “There are no ready-made solutions. Staff should facilitate collaboration by tailoring treatment toward the young person’s perspectives” and 2) “Emphasizing skills that matter: Staff should display a non-judgmental stance, educate patients, stimulate motivation, enable activities and prevent iatrogenic effects during the stay.”
The third paper investigates patient perspectives on factors valued as important for the recovery process. A thematic structure entailing three levels were generated. The superordinate theme was “Recovery is a long and winding journey: Recognizing the need for support and highlighting the need for action.” This captured three main themes which emphasized the importance of 1) “Realizing you have a problem,” 2) “Being involved in important relationships,” and 3) “Giving treatment a real chance.” Although participants largely recognized the importance of support from others, including family, friends and health care professionals, the most striking finding in this study was their distinctive emphasis on their own self-responsibility and their own determination to recover.
The fourth paper explores a subsample of eight families, including perspectives from patients, parents and siblings. Five main themes were generated. Results demonstrate that individual family members enter the treatment setting with very different expectations, perceived needs and knowledge about the upcoming admission. Further, we found that most parents and siblings favored interacting with other parents and siblings during the admission, whereas peer interactions were viewed as challenging for the young person with anorexia. We also found variation in perspectives on staff expertise and the structure of the eating disorder unit. Most parents appreciated that the admission facilitated weight gain, and that treatment helped re-establish more normalized meal routines and strengthened parental authority. Both parents and siblings emphasized the benefit of gaining insight into the young person’s challenges during treatment. Somewhat concerning was that some of the parents felt treatment could maintain them in a bystander position. This is a stark contrast to the hallmark of family-based treatment, which aims to empower parents. We also found that most participants experienced that treatment strengthened family relationships. Still, some noted the opposite, that treatment enhanced the experience of within-family fragmentation. We also found, aligning with Paper 1, that discharge represented a critical stage. Several questioned the rationale of transitioning back to a treatment setting where treatment had little or no effect in the first place. For most siblings, discharge represented ending treatment for good.
Collectively, this work has several treatment implications. First, results can inform strategies to better engage the entire family during treatment to maximize the benefit of family-based inpatient care. Findings also emphasize the importance of striking a balance between supporting parental empowerment with fostering the young patient’s treatment engagement. Importantly, results suggest enhancing pre-admission preparations to facilitate an optimal treatment starting point, tailoring treatment to the clients’ unique and individual needs, and ensuring treatment is collaborative. Additionally, findings emphasize the importance of staff cultivating relevant skills and competencies. Lastly, this thesis underscores the need to prevent negative peer dynamics during admissions, and carefully plan discharge to aid sustained improvements.