Development of cancer needs questionnaire for parents and carers of adolescents and young adults with cancer
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In order to improve the service delivery for the parents and carers of adolescents and young adults (AYAs) with cancer, it is important to develop measures which assess the specific issues and concerns faced by this group. The aims of this study were to describe the development and acceptability of a measure of unmet needs of parents and carers of AYA cancer survivors and to assess the prevalence of unmet needs among the respondents.
A literature search and focus groups with consumers and health professionals were used to inform item development. AYA cancer survivors and their parents and carers were identified from seven hospitals in Australia. Parents and carers who consented for their contact details to be released to the research team were sent a paper-and-pencil questionnaire. One mailed reminder and one phone call reminder were made to non-responders.
The unmet needs survey consisted of eight domains and 150 items: (1) cancer treatment staff, (2) cancer treatment centre, (3) study, (4) work, (5) information, (6) feelings, (7) relationships and (8) daily life. Eighty-three parents and carers completed the survey. The mean number of high or very high unmet needs reported was 24, with information needs among the most prevalent high/very high unmet needs.
The questionnaire developed has demonstrable face and content validity and acceptability. Unmet needs are prevalent among parents and carers of AYA cancer survivors, suggesting the need for further psychometric testing of the measure.
KeywordsCancer Adolescent and young adult Unmet needs Psychosocial Parents Caregiver
This research was supported by a National Health and Medical Research Institute grant (300749). Dr. Carey is supported by a Hunter Medical Research Institute post-doctoral fellowship and Ms. Clinton-McHarg is supported by a Leukaemia Foundation post-doctoral fellowship. The authors gratefully acknowledge the following people who assisted with the recruitment of participants at treatment centres: Dr. Andrew Wei, A/Prof. Ian Kerridge, Dr. Julian Cooney, Ms. Kate Thompson, Dr. Michael Osborn, A/Prof. Paula Marlton, Dr. William Stevenson, Ms. Angela Bayley, Mr. Gavin Dyson, Ms. Gillian Myles, Ms. Megan Margaria and Ms. Molly Forbes. Thanks also to Dr. Pandora Patterson, CanTeen Australia, Professor Afaf Girgis, Dr. Frank Alvaro and The Paediatric Oncology Unit at the John Hunter Hospital who provided valuable assistance in refining the items included in the measure.
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