The anorexic adolescent: Challenges to nursing care. Literature review
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1 The anorexic adolescent: Challenges to nursing care Literature review 1
2 Table of Contents Abstract..3 Introduction 4 Search Method 5 Therapeutic Relationship 6-7 Weight Restoration.8-9 Family Centred Care Conclusion Further Research Recommendations 14 References
3 Abstract Background: Anorexia nervosa can be defined as a psychological illness, characterized by an obsessive desire to lose weight by refusing to eat. The typical onset of anorexia nervosa occurs between the ages of Currently, there is a growing weight loss culture and anorexia nervosa is becoming an increasingly salient issue in nursing care. While anorexia nervosa is a widely researched topic, the writer found there to be limited research into difficulties nursing staff are faced with when caring for the anorexic adolescent. Aim: The purpose of this literature review is to explore the challenges presented to nursing staff when caring for an adolescent suffering from anorexia nervosa. Method: A literature review was undertaken by searching the databases CINAHL, PsycArticles, PsycInfo and PubMed. Articles gathered range in date from articles were selected to be included in the literature review; 11 qualitative, 13 quantitative and 2 literature reviews. Results: Three main challenges to nursing care emerged from the literature; a therapeutic relationship, weight restoration and family-centred-care. Conclusion: Overall, it is evident that the anorexic patient can be a challenge to nursing staff. Through difficulties in building a therapeutic relationship, resistance to weight restoration, incorporating the family into care and resolving family conflicts, providing treatment can be problematic. As a result, it is evident that nurse education is pertinent in order to overcome the challenges presented by the anorexic patient and successfully provide appropriate care. 3
4 Introduction Anorexia nervosa, hereafter referred to as AN, can be defined as a psychological illness, characterized by an obsessive desire to lose weight by refusing to eat (Soanes & Stevenson, 2008). There is an annual incidence of 10 cases of AN per 100,000 of the population in females and 0.5 for males (DoHC, 2006). The typical onset of AN occurs between the ages of (WHO, 2004). AN is a serious condition with a 20% mortality rate in chronic patients (DoHC, 2006). It is suggested that this is as a result of a strong sense of denial within the anorexic population, leading to late presentation. The anorexic patient often does not accept diagnosis, minimizes the implications of the illness and refuses treatment (Couterier & Lock, 2006). Therefore, providing treatment is difficult (DoHC, 2006). Furthermore, for patients suffering from AN, a sense of self worth can be dependant on thinness (Paterson et al., 2007). As a result, patients can view treatment as a fight for control and become resistant to care (Halvorsen & Heyerdohl). Consequently, providing care for the AN patient can be challenging for nursing staff. Currently, there is a growing weight loss culture and AN is becoming an increasingly salient issue in nursing care (King & Turner, 2000). While AN is a widely researched topic, the writer found there to be limited research into difficulties nursing staff are faced with when caring for the anorexic adolescent. Consequently, the purpose of this literature review is to explore the challenges presented to nursing staff when caring for an adolescent suffering from AN. 4
5 Search Method A literature review was undertaken by searching the databases CINAHL, PsycArticles, PsycInfo and PubMed. The search terms anorexia, anorexia nervosa, nursing care, weight restoration, family therapy, challenging behaviour, therapeutic relationship, adolescent and family-centred-care were utilized to gather relevant research articles. Articles gathered range in date from articles that the writer found to be the most pertinent were selected to be included in the literature review; 11 qualitative, 13 quantitative and 2 literature reviews. Three main themes emerged from the literature; building a therapeutic relationship, weight restoration and family-centred-care. 5
6 Therapeutic Relationship Patients suffering from AN often do not consider themselves entitled to expressing emotions (Fox, 2009). Emotions are seen as being bad or wrong and evoke feelings of fear and shame as a result. Eating disorders can be used as a coping mechanism to block emotions, with food restriction used to control and deal with painful emotional states felt by the individual (Harrison et al., 2009). Anorexic patients often experience difficulties in expressing themselves and frequently have compulsive traits, striving for perfectionism (Nilsson et al., 2007). Fassion et al. (2001) describe anorexic patients as being conflict avoiders, who turn anger towards themselves. As a result, an eating disorder can develop as a means of controlling anger in a manner that does not require it being communicated (Fox, 2009). Consequently, in can be difficult for nurses to engage with the anorexic patient who appears devoid of emotional expression. Therefore, building a therapeutic relationship, an essential component in the treatment of the anorexic patient, can be challenging. In a qualitative study, King & Turner (2000) identified difficulties in building a rapport with the AN patient. In-depth interviews were carried out with 5 registered nurses in a general hospital in Australia, in order to explore the experience of registered nurses caring for adolescent anorexic females within a paediatric ward setting. The nurses did not have a mental health background, but had cared for an anorexic adolescent patient within the previous 6 months. The study suggests that for effective care and optimum compliance with nursing interventions, forming a therapeutic relationship with the patient is imperative. This relationship should be founded upon trust, compassion and reliability. The study suggests that continuity of care can be of great importance and regular staff meetings may allow for consistency in care. However, the study found that patients might be incompliant with care, dishonest and untrustworthy, which could cause difficulties in building a therapeutic relationship. Patients were found to be deceitful, untruthful and unable to nurture a trusting relationship due to their avoidance of emotion. As a result, the nurses found it difficult to remain non-judgmental and build a rapport with the patient. Further evidence to support the importance of an individualized and consistent approach to care was also identified by Colton & Pistrong (2004). This phenomenological study researched 19 AN inpatients from two inpatient units, using semi-structured interviews. The aim of the study was to provide a detailed description of the inpatient experience of 6
7 anorexic adolescents. This study highlighted that patients want to be viewed as unique characters with varying emotional needs, and not solely as a typical anorexic patient. The patients studied expressed the importance of nurses making themselves available to discuss concerns and fears. Patients valued this time and it assisted the formulation of a therapeutic relationship. This study however, did have some limitations. Due to the small sample size, and the fact that only two inpatient units were researched, one cannot generalize the findings. However, the study did identify a gap in research and suggested that further studies should be carried out to consider the association between the patient s experiences of care and the final outcome of the treatment provided. Similar to King & Turner and Colton & Pistrong, George (1997) discusses the importance of a therapeutic relationship. This literature review describes a potential for guarded and scheming behaviour. Due to this dishonest conduct, nurses found it difficult to maintain a trusting relationship. The review suggests that nurses should understand that patients might experience sincere difficulty in giving away control of eating habits, and acknowledge that this may appear as uncooperative behaviour. However, this behaviour may in fact be a cry for help, as the adolescent searches for attention and battles with giving up power over her body. The review found that by continually building upon a dependable relationship, patients can be facilitated to open up and express feelings, which could potentially lead to a trusting relationship and increased compliance with nursing interventions. In summary, the literature suggests that a therapeutic relationship is pertinent in the care of the AN patient. However, due to a struggle for control, avoidance of emotion and dishonest behaviour, nurses found it difficult to remain non-judgmental and build a rapport with the patient (King & Turner, 2000). Consequently, it is imperative that nurses recognize uncooperative behaviour as a struggle for control and a cry for help, and aim to continuously build upon a trusting and nurturing relationship despite challenging behaviour (George, 1997). 7
8 Weight Restoration The weight restoration process of the anorexic adolescent can pose a significant challenge to nursing staff. Intense fears of eating and weight gain are central symptoms in AN (Halvorsen & Heyerdohl, 2007). Consequently, patients suffering from AN are often resistant to commencing treatment and gaining weight (Patel et al., 2003). AN has become a part of their identity and a fight for control (Halvorsen & Heyerdohl, 2007). This can result in poor patient compliance and difficulties in providing treatment. In a quantitative study, Karpowicz et al. (2009) examined 38 female patients at a specialist AN ward. The participants took part in a self-evaluation questionnaire when admitted to the ward and again, after 3 months. The study found that as a result of a phobia of gaining weight, a fixation with eating food and caloric intake developed. Furthermore, the study identified the anorexic patients feelings of low self-esteem, which appeared to be central in the patients urge for thinness. However, due to the small sample size, short follow-up period and the absence of a control for comparison, this study had significant limitations. However, a strength of the study is that the clinical implication of low self-esteem is discussed; the importance of working on low self-esteem in conjunction with weight restoration in order to reduce the patients fear of gaining weight. Similar to Karpowicz s et al. (2009) findings, Van Ommen s et al. (2009) qualitative study of 13 adolescent AN patients identified a strong sense of food aversion and a fear of gaining weight. The study found that the anorexic patients were unable to break obsessive patterns of weight loss alone. As a result, nurses contributed substantially to the anorexic patients recovery. Consequently, it is suggested that nurses would benefit in receiving advance training in order to effectively work with the AN population. However, a limitation of the study is that the patients were interviewed retrospectively, leading to a potential for recall bias. The resumption of menses is an important indicator of biological health for female AN patients. In a quantitative study, Golden et al. (2008) followed 56 anorexic patients weight gain every three months until the resumption on menses. The aim of the study was to determine the body mass index percentile at which the return of menses occurs. A significant limitation of this study is that it cannot be applied to the male anorexic population. Golden et al. (2008) argue that the patient may have a normal body weight but this does not in actual fact signify optimal nutrition or health. Despite a normal weight, if the patient is restricting caloric intake, amenorrhea will occur. The study also identified the 8
9 challenge of setting a weight target. Adolescents are often still growing making it difficult to identify a set goal weight target. Therefore, it is suggested that a weight range, as opposed to target, may be preferable in practice. However, Roots et al. (2006) found that eating disorder services place a lot of value on setting a goal weight target. In this quantitative study, 21 specialist inpatient eating disorder services for adolescents completed a questionnaire and it was identified that weight restoration is used as a central determinant in deciding discharge readiness. These findings are consistent with research carried out by Lund et al. (2009) where emphasis was also placed upon achieving a goal weight target, with the patient ideally gaining 0.8kg/week or more in order to optimize recovery. Interestingly, Gila et al. (2005) carried out a study on the male anorexic population. This quantitative study consisted of self-report questionnaires completed by 30 male adolescents with AN and a comparison group of 421 male adolescents from the general population. The study found that the lower the body mass index of the patient, the higher the body over estimation. This correlated significantly with abnormal eating habits and a drive for thinness. However, due to a lack of research within the male anorexic population, the results were validated by female studies. Therefore, a limitation of the study is that aspects may be more or less relevant for males. Nonetheless, a strength of this study is that a significant gap in research has been identified; the male population suffering from AN. Consequently, further research was recommended into male AN patients in order to investigate particular psychological characteristics relating to males and to enhance treatment programs. In summary, as a result of a phobia of gaining weight, the anorexic patient may be resistant to, or comply poorly with treatment (Patel et al., 2003). This creates a challenge for nursing staff to commence and maintain the patient s weight restoration. Not only is the weight restoration process difficult, it is also problematic to set an expected weight target. Adolescents are often still growing and as a result, a weight range, as opposed to target, may be preferable in practice (Golden et al., 2008). 9
10 Family-Centered-Care In the initial stages of treatment, the perception of AN as an individual issue should be changed and viewed as a family problem that necessitates the family s active involvement and shared efforts in treatment. However, practicing family-centered-care can be a challenging process for nurses. Families may have little education regarding AN and family conflicts may have arisen due to the impact of AN on familial relationships. Consequently, nurses should place importance on the family s joint effort to work out the hidden conflicts that have developed as a result of the disorder. This should challenge dysfunctional family attitudes and promote insight and understanding of each other s viewpoints (Ma, 2008). Education is core to family-centered-care and is a recurring theme throughout the literature. In a qualitative study using in-depth interviews with 24 parents, Honey et al. (2008) aimed to identify what support parents of teenage girls with AN want from clinicians. Parents discussed wanting information about AN, its impact on the family, advice and emotional support. Turrell et al. (2005) recognized that nurses have frequent contact with patients and their family and therefore, have the opportunity to integrate parents into part of the team. This was found to be beneficial by Carlton & Pyle (2007) in their quantitative study of a family based approach to care. The study aimed to investigate the effects of a multidisciplinary education and support program for parents of adolescents with AN. The results of the study showed that parents who were provided with education and support felt less excluded from their child s care in comparison to parents who had not received this. Additionally, the parents who did receive education and support also felt significantly more prepared to take their child home. However, 53 out of 82 parents questioned answered the questionnaire retrospectively. Consequently, recall biases might be present within the study. The success of treatment may have altered responses; if their child had successfully recovered, they may have given more positive feedback then if recovery had not been successful. Family conflicts are also central in adolescent AN research. In a quantitative study Sim et al. (2009) aimed to determine the nature of family distress in girls with AN. This study compared 20 anorexic girls with 20 insulin dependant diabetic girls and 20 healthy controls. When compared with the healthy girls, mothers of the girls with AN spoke of more family disputes and less fulfillment in the parenting role. Mothers of girls with AN 10
11 were also found to feel considerably more emotional consequences of their daughter s anorexia, such as depression. These findings are consistent with qualitative research carried out by Honey et al. (2006), where parents discussed feeling distressed, anxious and worried about the impact of AN on siblings. Consequently, it is suggested that by resolving the parents emotional distress parents can be empowered to become involved in the treatment of their child s anorexia. Similarily, Kyriacou et al. (2009) discuss the emotional consequences for parents with a child who is suffering from AN. Six parents completed a questionnaire and described feeling emotionally blackmailed and manipulated as a result of not being able to express their emotional reactions to their child s AN, for fear of being met with a refusal to eat. However, due to the small sample size in this study, further research is needed to determine if this is applicable to a larger group of individuals with AN. In contrast to research into AN causing family distress, Dollos & Denford (2008) investigated how a negative family life can lead to the development of AN. Through semistructured interviews with four families, each containing an adolescent who had been suffering from AN, a sibling and the parents, the impact of negative family relationships was established. The anorexic adolescents described a sense of continuous conflict between the parents, being pressurized into taking sides and feeling caught in-between the arguments. Therefore an insecure and confusing family environment was created. Consequently, not eating evolved as a form of control of an otherwise frightening and confusing family life. As a result, the study suggests that nurses enable relationship building and open discussions about feelings and anxieties. In summary, continuous family participation is imperative, in particular for the adolescent patient living with their parents because family concerns must be tackled (Patel et al., 2003). Incorporating education, open discussion and resolving disputes is pertinent in the nursing care of the anorexic adolescent. The family should be empowered to work together in an effort to resolve issues and combat AN together (Ma, 2008). 11
12 Conclusion This literature review aimed to explore challenges to nursing staff when caring for an adolescent patient suffering from AN. Three main themes emerged from the literature; the therapeutic relationship, weight restoration and family-centered-care. The theme of a therapeutic relationship showed that anorexic adolescents often avoid experiencing and expressing emotions and use eating disorders as a mechanism for blocking out emotions (Harrison, 2009). As a result it can be challenging for nurses to engage with the adolescent and form a therapeutic relationship. The therapeutic relationship should be founded upon trust, compassion and reliability. However, the patients can be dishonest, untrustworthy and resistant to treatment. As a result, building a therapeutic relationship can be problematic as nurses struggle to remain non-judgmental and nurture a trusting relationship (King & Turner, 2000). The theme of weight restoration showed that patients can have a strong fear of gaining weight (Karpowicz et al., 2009). As a result, patients can be resistant to the weight restoration process (Patel et al., 2003). The literature suggests that the nurse should work on self-esteem in conjunction with weight restoration in order to lessen the fear of gaining weight (Karpowicz et al., 2009). Furthermore, it was identified that as adolescents are often still growing, setting a weight target can be problematic. As a result, the literature suggests that a weight range, as opposed to target, may be preferable in practice (Golden et al., 2008). Additionally, the resumption of menses was found to be a significant indicator of health. A patient can have a normal weight, but if caloric intake is being restricted, menses will not occur (Golden et al., 2008). The theme of family-centered-care identified the need for parent education. Parents wanted information about AN and its impact on the family (Honey et al., 2008). Nurses are in close contact with patients and their families and are in an optimum position to collaborate with parents as a part of the team, including them in the treatment of their child (Turrell et al., 2005). However, due to family conflicts, family-centered-care can become problematic. Parental distress should be confronted in order to empower parents to successfully care for their child (Honey, 2006). Furthermore, negative family relationships should be resolved in order to create a secure family environment, where the adolescent 12
13 does not stop eating in an attempt to gain control over the familial situation (Dollos & Denford, 2008). Overall, it is evident that the AN patient can be a challenge to nursing staff. Through difficulties in building a therapeutic relationship, resistance to weight restoration, incorporating the family into care and resolving family conflicts, providing treatment can be problematic. However, through continually building upon a trusting relationship (George, 1997), working on low self-esteem in combination with commencing weight restoration in order to reduce the phobia of gaining weight (Karpowicz et al., 2009), providing education (Honey et al., 2008) and changing family attitudes (Ma, 2008), compliance with care can be increased. As a result, it is evident that nurse education is pertinent in order to overcome the challenges presented by the AN patient and successfully provide appropriate care (Van Ommen et al., 2009). 13
14 Further Research Recommendations While a wide range of literature surrounds the topic of AN, a gap in research relating to the problems faced by nursing staff was identified. Consequently, further research into the challenges of providing care interventions for the AN adolescent should be carried out. Furthermore, the literature available mainly focuses on female AN patients, with very limited research into male patients. Further studies should aim to explore the male s experience of AN. Additionally, small sample sizes were commonly used throughout the research. Further research should utilize larger sample groups in order to validate current findings with a wider AN population. 14
15 References Carlton, P. & Pyle, R. (2007) A program for parents of teens with anorexia nervosa and eating disorders not otherwise specified. International Journal of Psychiatry in Clinical Practice 11(1) Colton, A. & Pistrong, N (2004) Adolescents experiences of inpatient treatment for anorexia nervosa. European Eating Disorders Review 12, Couturier, J. & Lock, J. (2006) Denial and minimization in adolescents with anorexia nervosa. International Journal of Eating Disorders 39(3) Dallos, R. & Denford, S. (2008) A qualitative exploration of relationship and attachment themes in families with an eating disorder. Clinical Child Psychology 13, Department of Health & Children (2006) A Vision for Change Report of the Expert Group on Mental Health Policy. Stationary Office, Sun Alliance House, Molesworth Street, Dublin 2. Fassino, S., Doga, G., Piero, A., Leombruni, P. & Rovera, G. (2001) Anger and personalities in eating disorders. Journal of Psychosomatic Research 51, Fox, J. (2009) A qualitative exploration of the perception of emotions in anorexia nervosa: A basic emotion and developmental perspective. Clinical Psychology and Psychotherapy 16, George, L. (1997) The psychological characteristics of patients suffering from anorexia nervosa and the nurse s role in creating a therapeutic relationship. Journal of Advanced Nursing 26,
16 Gila, A., Castro, J., Cesena, J. & Tora, J. (2005) Anorexia nervosa in male adolescents. Body image, eating attitudes and psychological traits. Journal of Adolescent Health 36, Golden. N., Jacobson, M., Sterling, W. & Hertz, S. (2008) Treatment goal weight in adolescents with anorexia nervosa: Use of BMI percentiles. International Journal of Eating Disorders 41(4) Halvorsen, I. & Heyerdohl, S. (2007) Perception in adolescent onset of anorexia nervosa: Retrospective views of patients and parents. International Journal of eating Disorders 40(7) Harrison, A., Sullivan, S., Tchanturio, K. & Treasure, J. (2009) Emotion recognition and regulation in anorexia nervosa. Clinical Psychology and Psychotherapy 16, Honey, A., Broughtwood,D. Clarke, S., Halse, C., Kohn, M. & Madden, S. (2008) Support for parents of children with anorexia: What parents want. Eating Disorders 16, Honey, A., Clarke, S., Halse, C., Kohn, M. & Madden, S. (2006) The influence of siblings on the experience of anorexia nervosa for adolescent girls. European Eating Disorders Review 14, Karpowicz, E., Skarsater, I. & Nevonen, L. (2009) self-esteem in patients treated for anorexia nervosa. International Journal of Mental Health Nursing 18, King, S. & Turner, D. (2000) caring for adolescent females with anorexia nervosa: Registered nurses perspective. Journal of Advanced Nursing 32(1) Kyriacou, O., Easter, A. & Tchanturia, K. (2009) Comparing views of patients, parents and clinicians on emotions in anorexia: A qualitative study. Journal of Health Psychology 14,
17 Lund, B., Hernandez, E., Yates, W., Mitchell, J. Mckee, P. & Johnson, C. (2009) Rate of inpatient weight restoration predicts outcome in anorexia nervosa. International Journal of Eating Disorders 42(4) Ma, J. (2008) Patients perspective on family therapy for anorexia nervosa: A qualitative inquiry in a Chinese context. Australian & New Zealand Journal of Family Therapy 29(1) 10-16/ Nilsson, K., Abrahamsson, E., Torbiornsson, A. & Hagglof, B. (2007) Causes of adolescent onset anorexia nervosa: Patient perspectives. Eating Disorders 15, Patel, D. Pratt, H. & Greydanus, D. (2003) Treatment of adolescents with anorexia nervosa. Journal of Adolescent Research 18(3) Paterson, G., Power, K., Yellowlees, A., Park, K. & Taylor, L. (2007) The relationship between two-dimensional self-esteem and problem solving style in an anorexic inpatient sample. European Eating Disorders Review 15, Roots, P. Howker, J. & Gowers, S. (2006) The use of target weights in the inpatient treatment of adolescent anorexia nervosa. European Eating Disorders Review 14, Sim, L. Homme, J., Lteif,A., Vande Voort, J., Schak, K. & Ellingson, J. (2009) Family functioning and maternal distress in adolescent girls with anorexia nervosa. International Journal of Eating Disorders 42(6) Soanes, C. & Stevenson, A. (eds) (2008) Concise Oxford English Dictionary 11 th edn. Revised. Oxford University Press, Great Clarendon Street, Oxford, Ox2 6DP. Turrell, S., Davis, R., Graham, H. & Weiss, I. (2005) Adolescents with anorexia nervosa: Multiple perspectives of discharge readiness. Journal of Child and Adolescent Psychiatric Nursing 18(3)
18 Van Ommen, J., Meerwijk, E., Kars, M., Van Elburg, A., Van Meijel, B. & (2009) Effective nursing care of adolescents diagnosed with anorexia nervosa: the patients perspective. Journal of Clinical Nursing 18, World Health Organization (2004) Prevention of Mental Disorders. Effective Interventions and Policy Options Summary Report. World Health Organization Dept. of Mental Health and Substance Abuse; in collaboration with the Prevention Research Centre of the Universities of Nijmegen and Maastricht, Marketing and Dissemination, World Health Organization, 20 Avenue Appia, 1211 Geneva 27, Switzerland. 18
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