Measuring psychosocial distress and parenting concerns among adults with cancer

Abstract

PURPOSE We conducted a two phase, mixed methods study to develop a Parenting Concerns Questionnaire (PCQ) for adults with cancer. Limited information about this area of psychosocial distress highlights the need for a measurement tool that can identify adult oncology patients with heightened parenting concerns who could benefit from additional intervention. PATIENTS AND METHODS Telephone focus groups were conducted with 16 oncology patients who had children 18 years old and younger. Group interview transcripts were analyzed to generate qualitative themes and candidate items for the PCQ. A 38-item version of the questionnaire was completed by 173 oncology outpatients with children 18 years old and under. Participants also completed the Distress Thermometer, HADS, and FACT-G. Exploratory factor analyses revealed the emergence of 3 subscales of 5 items each, yielding a 15 item questionnaire. Associations between total PCQ scores, standardized measures of distress, depression, anxiety, quality of life, and demographic and illness characteristics were examined. RESULTS The 15 item PCQ demonstrates good internal consistency (Cronbach’s α = .83). PCQ scores were significantly associated (p<.01) with standardized measures of psychosocial distress (Distress Thermometer, HADS, and FACT-G) in the expected directions. Higher PCQ scores were associated with female gender, single parenthood, metastatic or recurrent cancer, subjective understanding of incurable disease, co-morbid chronic health condition, and current mental health treatment. CONCLUSIONS The Parenting Concerns Questionnaire proved a reliable and valid measure of parenting distress among cancer patients meriting further study.

Psychometric properties of the Parenting Concerns Questionnaire in cancer survivors with minor and young adult children

“…In the clinical sample of outpatients of Muriel and colleagues , parents reported higher concerns than our population‐based sample of cancer survivors. Cancer patients in the original study mainly received treatment within the month prior the survey, whereas our sample involves cancer survivors up to 6 years after diagnosis.…”

Parenting concerns, quality of life, and psychological distress in patients with advanced cancer

“…They included parents without formal or informal adult caregivers who assisted with parenting responsibilities, divorced or separated individuals who shared parenting responsibilities with former spouses, and individuals who identified their own parents as important caregivers for their children. Therefore, we found single parenting status difficult to characterize, although it has been defined as a demographic variable associated with higher parenting concerns in other studies of adult cancer patients . While single parents in our sample reported equivalent levels of social support as measured by the MOS Social Support Survey, we suspect that single parents are at risk of greater parenting concerns because of the increased possibility that their children will lack an identified adult caregiver following the ill parent's death.…”

“…Total score range is 1–5, and responses are averaged with higher scores indicating higher parenting concerns. The PCQ has demonstrated good internal consistency and face validity . Cronbach's alpha for the study sample was 0.88.…”

Parenting changes in adults with cancer

“…Full details on the development and validation of the PCQ, as well as results from factor analyses of items, are described elsewhere. 7 …”

“…3,6 Prior research found that many parents report significant concern that illness-related changes in mood, cognition, physical functioning and family routines are affecting their children. 7 This was particularly true for parents who experienced poorer physical, functional, emotional and social quality of life. While parenting behavior was not directly observed, the findings suggest that parents themselves believe that their children are affected by cancer-related parenting changes, and this is particularly true for parents whose quality of life is most negatively affected by illness.…”