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)

Patterson, Pandora; Pearce, Angela; Slawitschka, Emma

doi:10.1007/s00520-010-0933-7

Cited by 37 publications

(43 citation statements)

References 27 publications

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“…Parents were their major source of trust, safety, and comfort. Our findings partly confirm earlier studies concerning different kinds of difficulties at school (Su & Ryan-Wenger, 2007;Patterson et al, 2011), but school was also an important source of comfort and support. Maynard et al (2013) identified actions that parents can take to increase feelings of safety and support, including being available, inviting their children to talk, and spending quality time together.…”

Section: Discussionsupporting

confidence: 91%

Maintaining everyday life in a family with a dying parent: Teenagers' experiences of adapting to responsibility

2015

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Section: Discussionsupporting

confidence: 91%

Maintaining everyday life in a family with a dying parent: Teenagers' experiences of adapting to responsibility

2015

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“…This in turn may impair personal development resulting in high levels of emotional and psychological distress . It was not surprising to see a strong association between distress levels and unmet needs, which has been reported by others …”

Section: Discussionmentioning

confidence: 63%

“…Each offspring was given password‐protected access to a study‐specific website. Participants recorded demographic data and completed the Kessler‐10 questionnaire (K10) and the Offspring Cancer Needs Instrument (OCNI) . The K10 is a validated 10‐item questionnaire, which measures psychological distress experienced in the preceding 4 weeks (Data S1).…”

Section: Methodsmentioning

confidence: 99%

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Psychosocial consequences in offspring of women with breast cancer

Chan

Lomma²,

Chih

et al. 2019

Psycho-Oncology

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Objective Breast cancer (BC) accounts for 24% of female cancers, with approximately one quarter of women likely to have offspring aged less than 25 years. Recent publications demonstrate negative psychosocial well‐being in these offspring. We prospectively assessed for psychological distress and unmet needs in offspring of BC patients. Methods Eligible offspring aged 14 to 24 years were consented and completed the Kessler‐10 Questionnaire and Offspring Cancer Needs Instrument. Demographic and BC details were obtained. Results Over a 7‐month period, 120 offspring from 74 BC patients were included. Fifty‐nine mothers had nonmetastatic BC (nMBC), and 27 had metastatic BC (MBC) with median time from diagnosis of 27.6 and 36.1 months, respectively. The prevalence of high/very high distress was 31%, with significantly higher scores reported by female offspring (P = .017). Unmet needs were reported by more than 50% of offspring with the majority of needs relating to information about their mother's cancer. Greater unmet needs were seen in female offspring and offspring with none or one sibling for several domains (practical assistance, time‐out, dealing with feelings, and support from friends; P < .05). Greater unmet needs were seen in regard to feelings for MBC patients' offspring compared with nMBC but were similar for other unmet needs. Conclusions Our study confirms high levels of psychological distress in offspring of BC patients, with female offspring reporting significantly higher emotional distress and unmet needs. More than 50% of respondents reported unmet needs in areas that can potentially be supported, including greater information provision, improving practical issues, and enabling sufficient recreational time.

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“…books was high. This reflects the finding that information needs are high among AYAs affected by cancer (Clinton-McHarg et al, 2012;Patterson, Millar, Desille, & McDonald, 2012;Patterson, Millar, & Visser, 2011;Patterson, Pearce, & Slawitschka, 2011). In particular, the young people felt that the design and the ease of use of the book were excellent.…”

Section: Expectations and Satisfactionmentioning

confidence: 70%