The initial development of an instrument to assess the psychosocial needs and unmet needs of young people who have a parent with cancer: piloting the offspring cancer needs instrument (OCNI).

PURPOSE: This study aimed to identify the psychosocial needs of young people (12-24 years) who have a parent with cancer and to assess whether these needs are being met. This paper also presented the initial steps in the development of a need-based measure-the Offspring Cancer Needs Instrument (OCNI).
METHODS: Study 1 used qualitative methods to identify the needs of the target population, including a focus group (n = 6), telephone interviews (n = 8) and staff survey (n = 26). In study 2, a quantitative survey design was employed where 116 young people completed the 67-item OCNI and either the total difficulties score of the Strengths and Difficulties Questionnaire (SDQ-TD; 12-17-year-old) or Depression, Anxiety, Stress Scale-21 (DASS-21) (18-24-year-old). Tests of reliability (Cronbach's alpha) were used to assess the properties of each domain, where a level of 0.70 was deemed satisfactory as per scale guidelines. Construct validity was assessed by testing the proposed relationship between unmet needs and functioning where a coefficient of 0.03 was deemed satisfactory.
RESULTS: The qualitative data yielded eight need domains (information, peer support, feelings, carer support, family, school/work environment, access to support and respite and recreation), which were subsequently used to inform the item content of the OCNI. The survey data revealed that 90% of young people endorsed 10 or more needs, and nearly a quarter indicated >50 needs. It was also found that these needs often go unmet: 87% of the participants had at least one unmet need, 43% reported >10 and just under a quarter had >20 unmet needs. The two highest reported unmet needs related to understanding from friends and assistance with concentrating and staying on task. The OCNI exhibited face and content validity and acceptable reliability for most of the domains. Cronbach's alpha ranged from 0.64 (access to support) to 0.92 (information). Preliminary construct validity was assessed through the hypothesised positive relationship between unmet needs and the SDQ-TD for 12-17-year-old participants (r = 0.33, p<0.001) and the DASS-21 for 18-24-year-old participants (depression, r = 0.77, p < 0.001; anxiety, r = 0.66, p < 0.001; stress: r = 0.56, p < 0.05).
CONCLUSION: Young people (aged 12-24 years) who have a parent with cancer report a complex array of needs, many of which go unmet. The preliminary findings reported may be used to inform service providers in the development and evaluation of need-based programs to redress these unmet needs and thus ameliorate the effects of parental cancer. Services addressing information and school-based interventions are particularly pertinent given these current results.