It has become increasingly apparent that caring for an individual with mental health difficulties can have a negative impact on the psychosocial wellbeing of the carer (Cohn, 2005, Kyriacou et al., 2008, McCaulife et al., 2014 and Whitney et al., 2005). Research exploring care-giving distress remains limited, although some studies do exist that investigate the burden associated with caring for individuals with an eating disorder (Coomber and King, 2012, Highet et al., 2005, Sepulveda et al., 2008 and Treasure et al., 2001).
The caregiver role has been associated with a broad range of issues including dependency, a sense of loss, a negative impact on family functioning including leisure and financial burden (Ma, 2011, Santonastaso et al., 1997 and Szmukler et al., 1996). In a recent study, some parents identified objective burden including disruption to life, and subjective burden related to the emotional costs of care-giving and attitudes towards providing care (Macdonald, Murray, Goddard, & Treasure, 2011). Moreover, parents providing care to adolescents with anorexia nervosa may experience further challenges that relate to a lack of information, stigma, difficulties accessing services, negative staff attitudes and a lack of psychosocial supports (Gisladottir and Svavarsdottir 2011, Haigh and Treasure, 2003, Hillege et al., 2006, Stewart et al., 2006, Treasure et al., 2001 and Whitney et al., 2005). Recent intervention studies incorporated family centred care approaches including education and support which significantly reduced negative aspects of caregiving commonly associated with anorexia nervosa (Carlton and Pyle, 2007, Honey et al., 2007 and Kyriacou et al., 2009). Additionally, collaborative care skills workshops enabled carer’s to address distress and improve interpersonal difficulties (Goddard, MacDonald, & Treasure, 2011). The literature suggests that nursing staff are in a position to engage and support parents in the care and treatment process (Turrell, Davis, Graham, & Weiss, 2005) and provide multidisciplinary educational support programmes (Carlton & Pyle, 2007).
Global statistics have shown that prevalence rates in the US, which were previously estimated at 0.3% (Bulik, Reba, Siega-Riz, & Reichborn-Kjennerud, 2005), have risen and more recently been estimated at approximately 0.5% in adolescent girls (Rosen, 2012). In Western countries, the prevalence of anorexia nervosa among young females is currently estimated as 0.2–1% (Zanetti, 2013). Lifetime prevalence studies in US and Canada indicated rates of 0.5–0.6% with up to 1% being reported in the Netherlands (Preti et al., 2009).
From an Irish perspective, official Government statistics report that up to 200,000 people are affected by eating disorders with approximately 400 new cases each year (Department of Health & Children, 2006). One study revealed that 1.2% of girls may be at risk of developing anorexia nervosa (McNichols, 2007). In terms of mental health services, available statistics show that eating disorders represent 18% of all inpatient child and adolescent admissions (Health Research Board, 2008). Despite these figures, there is a distinct lack of studies that investigate the experiences of parents in relation to an adolescent with anorexia nervosa.
Materials and methods
Aim of this Study
The aim of the current study was to investigate the subjective experiences of parents in caring for an adolescent diagnosed with anorexia nervosa.
Design
A qualitative descriptive approach was utilized to address the aim of this study. Data were collected through semi-structured interviews conducted with ten parents to explore their experiences of caring for an adolescent with anorexia nervosa.
Recruitment and Sampling
Parents of an adolescent with anorexia nervosa were recruited from an outpatient clinic in Ireland. The participants included both mothers (n = 7) and fathers (n = 3) from both rural and urban communities. An identified gatekeeper distributed information packs to parents who met the study inclusion criteria. Parents were eligible to participate if the adolescent had received a diagnosis of anorexia nervosa and were outpatients at the time of recruitment.
Ethical Considerations
Approval to carry out the study was granted by the University Ethics Committee and the relevant Hospital Ethics Board. Information packs were provided to both parents and adolescents detailing the purpose of the study. Informed consent was obtained from the parents while informed assent was obtained from the adolescents. Both parties were given the opportunity to discuss any questions they may have had prior to signing consent forms. Interviews were conducted individually in a private space in the clinic whereby the interviewer could gauge any discomfort, offer support, and answer any concerns. Participants consented to be audio recorded and were assured that they could stop the interview at any point. Anonymity was assured. All data was stored securely in accordance with the Data Protection (Amendment) Act 2003 (Government of Ireland, 2003).
