Health-related quality of life, anxiety, depression and distress of mothers and fathers of children on Home parenteral nutrition. Issue 4 (August 2019)

• Record Type: Journal Article
• Authors: van Oers, Hedy A.; Haverman, Lotte; Olieman, Joanne F.; Neelis, Esther G.; Jonkers-Schuitema, Cora F.; Grootenhuis, Martha A.; Tabbers, Merit M.
• Is Part Of: Clinical nutrition. Volume 38:Issue 4(2019)
• Page Start: 1905
• Page End: 1912
• Publication Date: 2019-08
• Subjects: Parents -- Caregivers -- Psychosocial -- Home parenteral nutrition -- Intestinal failure -- Pediatrics; PN Parenteral Nutrition -- HPN Home Parenteral Nutrition -- HRQOL Health-Related Quality of Life -- TAAQOL TNO-AZL Quality Of Life Questionnaire -- HADS Hospital Anxiety and Depression Scale -- DT-P Distress Thermometer for Parents -- PROMs Patient Reported Outcome Measurements -- SPSS Statistical Package for Social Sciences -- ORs Odds Ratios; Critically ill -- Nutrition -- Periodicals; Diet therapy -- Periodicals; Parenteral feeding -- Periodicals; Enteral feeding -- Periodicals; Enteral Nutrition -- Periodicals; Parenteral Nutrition -- Periodicals; Metabolism -- Periodicals; Diétothérapie -- Périodiques; Alimentation parentérale -- Périodiques; Alimentation entérale -- Périodiques; Nutrition -- Périodiques; Diet therapy; Enteral feeding; Nutrition; Parenteral feeding; Electronic journals; Periodicals; Electronic journals; 615.854
• DOI: 10.1016/j.clnu.2018.06.981
• Languages: English
• ISSNs: 0261-5614

Abstract

Summary: Background & aims: Parents of children with intestinal failure, dependent on Home Parenteral Nutrition (HPN), may experience psychosocial problems due to the illness and intensive treatment of their child. Literature concerning psychosocial problems is scarce. Therefore, we aimed to investigate Health-Related Quality of Life (HRQOL), levels of anxiety, depression, distress and everyday problems of these mothers and fathers. Methods: A multicenter study was conducted among 37 mothers and 25 fathers of 37 children on HPN (response-rate 37/49 = 76%, mean age children = 5.1 years, SD = 4.6). Parents completed three questionnaires to measure different outcomes on the KLIK website (www.hetklikt.nu ): the TNO-AZL QOL Questionnaire (TAAQOL) to measure HRQOL, the Hospital Anxiety and Depression Scale (HADS) to measure anxiety and depression, and the Distress Thermometer for Parents (DT-P) to measure distress. Scores were compared to Dutch reference mothers and fathers using Mann–Whitney U-tests. Results: No differences were found in HRQOL, measured by the TAAQOL, between HPN parents compared to the reference groups, except for the subscale 'depressive emotions' for mothers (p = .01) and 'daily activities' for fathers (p = .04). HPN mothers reported higher levels of depression compared to reference mothers (p = .001). In addition, HPN mothers and fathers reported higher levels of distress than reference mothers (p = .001) and fathers (p = .03). HPN mothers reported significantly more problems in the practical, emotional, cognitive and parenting domains, fathers in the social, emotional and parenting domains. Conclusions: On HRQOL, anxiety and depression, HPN parents generally did not show much differences compared to reference parents. However, when asked about parental distress and everyday problems, HPN treatment of their child seems highly stressful for some parents and influences daily functioning. Therefore, structural screening for parental psychosocial problems in clinical practice, e.g. using the DT-P, is necessary in order to improve the well-being of both these parents and their children dependent on HPN.