The Unmet Psychosocial and Supportive Care Needs of Young Adults who have a Parent with a Non-Communicable Disease

Abstract

AIMS Unmet needs have mainly been investigated with formal and informal adult caregivers and ill individuals within psycho-oncology; findings indicate unmet needs are associated with negative affective state and caregiver burden. Research relating to adolescent children’s experiences of unmet needs during parental illness has, in the main, been based upon parental reports or professional opinion, yet research suggests that parental reports can downplay the effects and it is important to ask the adolescent child for their opinion. Adolescence is a transitional time in development; this may make the illness experience and subsequent needs vary from those of formal and informal adult caregivers. This thesis pragmatically investigates adolescent children’s firsthand accounts of unmet psychosocial and supportive care needs when they have a parent with a non-communicable disease. METHODS Systematic Review To inform the direction of the thesis and capture all relevant published literature, a comparative systematic review was carried on adolescent’s experiences of unmet needs when they have a parent with a NCD, cancer or psychological problem. The review was conducted using standardized procedures and guidance from the Cochrane collaboration. Interpretative Phenomenological Analysis 3 Qualitative methodology was used to investigate seven adolescent’s experiences of unmet psychosocial and supportive care needs in relation to having a parent with a NCD. Participants were recruited through institutions of further and higher education. Quantitative Research Pearson’s correlation and multiple regressions were used to test associations between unmet needs, depression, stress, anxiety and quality of life, and to determine the applicability of the revised version of the Offspring Cancer Needs Inventory (OCNI) for individuals who have a parent with a NCD. One hundred and seven adolescent children completed the revised version of the OCNI, the DASS-21 (depression, anxiety, and stress) and AC-QoL (Adult carers’ quality of life) scales. FINDINGS Systematic Review In the review 1479 papers were considered. Seven met the inclusion criteria, of these five papers related to cancer, one to chronic illness and one to psychological problems. Results suggest that adolescents had informational, supportive and recreational needs, and did not want to worry parents by asking them questions. The lack of hits and the disparity between illness groups is problematic in making comparisons and drawing definitive conclusions. Interpretative Phenomenological Analysis Four interdependent themes emerged from the data, two relating to interpersonal needs (Information Needs and Support Needs), and two relating to intrapersonal needs (Need for 4 Acknowledgement and Need to be Them-Self), each had their own number of sub-themes. Adolescent’s had a variety of needs that could be partially met through honest and accurate information, interpersonal support and acknowledgment of their caring role within the family. The interdependence of the needs indicated that the fulfilment of one need has the potential of meeting other needs. Unmet needs were comparable to those of adolescent children who have a parent with cancer; as such it was deemed that the new version of the OCNI would be suitable for use with individuals who had a parent with a NCD. Quantitative Research Ninety-Three percent of adolescents reported at least one unmet need. Analysis suggests that the unmet needs variables were co-dependent and correlated with depression, stress, anxiety, and quality of life. Certain unmet need variables predicted stress, anxiety, depression, and quality of life. CONCLUSION The findings of this thesis indicate that adolescent children who have a parent with a NCD have a variety of unmet needs, and that these are associated with affective state and well-being. It is suggested that counselling psychologists are well placed to provide psychological and needs based interventions based upon the findings within this thesis. More research is required in this area to determine cause and effect; owing to counselling psychologists working with the lifespan they would be well placed to further the knowledge in this area.