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Development of cancer needs questionnaire for parents and carers of adolescents and young adults with cancer

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Abstract

Purpose

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.

Methods

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.

Results

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.

Conclusions

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.

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Acknowledgements

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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Authors and Affiliations

  1. Priority Research Centre for Health Behaviour, Faculty of Health, The University of Newcastle, Callaghan, NSW, Australia

    Mariko L. Carey, Tara Clinton-McHarg & Robert William Sanson-Fisher

  2. National Drug and Alcohol Research Centre (NDARC), University of New South Wales, Sydney, NSW, Australia

    Anthony Shakeshaft

  3. The University of Newcastle, Room 266 David Maddison Building, University Drive, Callaghan, NSW, Australia, 2308

    Mariko L. Carey

Authors
  1. Mariko L. Carey
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  2. Tara Clinton-McHarg
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Correspondence to Mariko L. Carey.

Appendix

Appendix

We are trying to find better ways to help the parents, partners and carers of young people who have had cancer.

To do this, we are asking parents, partners and carers about the physical, psychological and social needs that they may have had since the young person’s cancer diagnosis.

For each question, please choose the answer that best describes your level of need. There are five choices:

No need

All my needs were met for this issue or this was not a problem for me

Low need

I needed a low amount of help with this problem but was not able to get it

Moderate need

I needed a moderate amount of help with this problem but was not able to get it

High need

I needed a high amount of help with this problem but was not able to get it

Very high need

I needed a very high amount of help with this problem but was not able to get it

There are no right or wrong answers. The survey will take around 20 min to complete. Your answers will remain strictly confidential.

The following questions ask about any needs you may have had at any time since the young person’s cancer diagnosis.

figure a
  1. 1.

    Cancer treatment staff

    figure bfigure bfigure b
  2. 2.

    Cancer treatment centre

    figure cfigure c
  3. 3.

    Education

    figure dfigure d
  4. 4.

    Work

    figure efigure e
  5. 5.

    Information

    figure ffigure f
  6. 6.

    Feelings

    figure gfigure gfigure g
  7. 7.

    Relationships

    figure hfigure hfigure h
  1. 8.

    Daily life

    figure ifigure i

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Carey, M.L., Clinton-McHarg, T., Sanson-Fisher, R.W. et al. Development of cancer needs questionnaire for parents and carers of adolescents and young adults with cancer. Support Care Cancer 20, 991–1010 (2012). https://doi.org/10.1007/s00520-011-1172-2

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  • DOI: https://doi.org/10.1007/s00520-011-1172-2

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