Maternal psychological health can be influenced by child's somatic health. Poor maternal psychological health may be deleterious for children's learning, development, and behavior (1). Feeding problems in chronically ill children may cause stress and anxiety in their caregivers (2–4), and treating the feeding problems may increase parental physical and psychological well-being (5), and thus have a positive influence on the child's situation. Most studies on effects of gastrostomy treatment have, however, focused on weight gain, complications, and gastroesophageal reflux (6–10). Possible effects on parental well-being have been less examined. We performed a study on the effects of gastrostomy in children with feeding problems on maternal psychological distress and parenting stress, hypothesizing that a gastrostomy would reduce psychological distress and parenting stress in mothers of children with major feeding problems. Furthermore, we wanted to identify variables that could affect the mothers’ psychological distress and parenting stress, and register changes in child health, including child quality of life.
During a 3-year period from January 2003 to December 2005, 87 chronically ill children with major feeding problems were admitted to Oslo University Hospital, a tertiary hospital, for gastrostomy placement. Fifty-eight mothers and children were included in a longitudinal observational study. Twenty-nine mothers/patients were excluded (age <4 weeks, concomitant surgery, not understanding the written language, mothers refusing). Of the 58 included, 34 answered questionnaires concerning psychological distress and parenting stress, and were included in this part of the study. Responders and nonresponders did not differ in age of both mother and child, underlying disease, and sex of child. The mothers were assessed before (T0), 6 months after (T6), and 18 months after (T18) gastrostomy placement. At T6, 1 child received total parenteral nutrition, and 1 child had removed the gastrostomy tube, thus the mothers were excluded from follow-up. Twenty-four questionnaires were returned at T6. At T18, 3 more mothers were excluded (2 children had undergone antireflux surgery, and 1 child had died). Twenty returned questionnaires at T18. Nineteen mothers returned questionnaires at all 3 assessments.
Child Clinical Data
Information concerning child health was obtained from medical records and a semistructured interview with the mothers at all 3 time points. Age, underlying disease(s), weight, and height were recorded from medical records, preoperatively. The presence of nasogastric tube, main nutritional route, duration of tube feeding, dysphagia, and vomiting were assessed preoperatively during interview with the mothers. Weight, height, main nutritional route, vomiting, and peristomal complications (hypergranulation, skin problems, pain, and leakage) were assessed 6 months (T6) and 18 months (T18) after gastrostomy placement. Mothers were asked whether their child's quality of life was changed after gastrostomy placement (improved-unchanged-worse), and whether their preoperative expectations for the gastrostomy were fulfilled.
Maternal Sociodemographic Data
Age, ethnicity, and level of education were assessed using a self-report questionnaire. Life events during the last 12 months that could influence maternal psychological distress and parenting stress were registered. In accordance with Abidin (11), the events registered were experienced pregnancy, marital reconciliation/marriage, divorce/separation, substantially decreased income/went deeply into debt, substantially increased income (20% or more), alcohol/drug problems, death of immediate family member or close family friend, or legal problems in their immediate family.
Maternal Psychological Distress
Maternal psychological distress was assessed by General Health Questionnaire 30-item version (GHQ-30). GHQ-30 has shown good reliability and validity (12), and has previously been used in similar populations (13,14). GHQ-30 includes 5 subscales: anxiety, well-being, depression, coping failure, and social dysfunction (15). Each question has 4 answering categories. Overall psychological distress was calculated using Likert score (0–1–2–3) resulting in GHQ total sum score (range 0–90). Higher scores indicate increased distress level. The subscale scores were also calculated using Likert score (0–1–2–3), but divided with the numbers of items in the subscale, giving a range from 0 to 3. To be included in the analysis, at least 80% of the items of each subscale had to be completed.
Maternal Parenting Stress
The Parenting Stress Index (PSI) is a well-documented, valid self-report questionnaire assessing stress related to parenting (11). The PSI contains 101 items scored on a 5-point Likert scale, and divided into 2 subscales: parent domain (range 54–270) and child domain (range 47–235). Parent domain mainly focuses on stress related to the parenting role, and child domain focuses on stress related to the child's behavior. Not more than 5 items were accepted as missing from the entire PSI to include the questionnaires in the analysis, and not more than 3 items missing from either child domain or parent domain (11). Higher scores indicate increased stress level.
Maternal Concerns Related to the Child's Feeding Problems
We used the Impact of Event Scale (IES) to assess stress related to mothers’ concerns for the child's feeding problems. IES is a 15-item questionnaire with 2 subscales: 7 items measure intrusion, and 8 items measure avoidance. This questionnaire is usually applied to evaluate subjective stress related to a specific traumatic life event (16). It has not been used to evaluate stress related to daily events (17). We accepted 1 missing in each subscale. The scoring range for each item is 0 (not at all) to 5 (very much), resulting in an avoidance score (range 0–40) and intrusion score (range 0–35). Higher scores indicate increased stress level.
Consent was obtained after oral and written information when the child was admitted in hospital for gastrostomy placement. The study was approved by the Regional Ethics Committee for Medical Research.
For comparison of repeated categorical data we used the McNemar test, and compared T0 with T6 and T18, respectively. We used linear mixed models with a random intercept term to analyze psychometric scores over time. The linear mixed model is an extension of regression analysis to model repeated measurements. The method assumes that missing data are missing at random, and may be more resilient than other methods when response rate is low. To analyze effects of different variables on our main outcomes (GHQ total sum score and parent domain PSI), we also used linear mixed models and adjusted for time. Possible effect modifications were examined using an interaction term and the model fit assessed with Akaike's information criterion (AIC). If not otherwise stated, continuous variables are described using mean and standard deviation (SD). A 5% statistical significance level was chosen. All of the analyses were performed using PASW Statistics version 18 (IBM, Armonk, NY).
Child Clinical Data
Child clinical data are presented in Table 1. There was no difference regarding age and underlying disease between those lost to follow-up and those who answered questionnaires at follow-up. Follow-ups were performed at mean 5.2 (SD 3.2) (T6) and 21.1 months (SD 5.2) (T18) after gastrostomy placement. Twenty-eight children had a nasogastric tube for median 9 months (range 0.5–38.0 months) before gastrostomy insertion. After gastrostomy, the percentage of children who vomited daily and the percentage who had low weight (weight-for-height ≤2.5 percentile) were not changed significantly (P = 0.38 and P = 1.0, respectively) (Table 1). During follow-up 83% (T6) and 70% (T18) experienced 1 or more peristomal complications, and all of the children had experienced complications at least at 1 of 2 time points (Table 1). Four children had undergone major heart surgery between T6 and T18. Otherwise, no major interventions to improve the medical situation of the children had occurred. Mothers reported that 75% (18/24) of the children had improved quality of life at T6, and at T18 the number was 85 % (17/20).
Mothers were median 32 years old (range 23–50 years). All of the mothers were white. Forty-four percent (15/34) had more than 12 years of education. There was no difference regarding age of mothers or their education level in mothers who answered questionnaires at follow-up and those who did not. At the first follow-up (T6), 79% (19/24) felt that their preoperative expectations to the gastrostomy were fulfilled, and at T18 85% (17/20) reported the same.
Mothers’ overall psychological distress was unchanged 6 months after (T6) and significantly reduced 18 months after (T18) gastrostomy placement (Table 2); however, their intrusive stress (stress related to concerns for the child's feeding problems) was reduced already after 6 months. Parenting stress did not change significantly (Table 2). There were no major differences of psychological distress and parenting stress before gastrostomy placement in mothers who responded at T18 and those who did not.
We tested mother's education, mother's age, negative life events, child's age, sex, neurological impairment, preoperative nasogastric tube, dysphagia, main nutritional route, daily vomiting, peristomal complications, and intrusive stress to find out whether these variables had any effect on the mothers’ psychological distress and parenting stress. When age of the mother increased it seemed that parenting stress was reduced (slope in regression model [B] = −1.2, P = 0.048). We also found that intrusive stress (IES) influenced overall psychological distress (GHQ total) over time. Including measured intrusive stress (IES) from each observation time as a covariate in a multiple model reduced the effect of time on GHQ total (Table 3).
Main caregivers’ health is of extreme importance for a child's health and development. For a chronically ill child the caregivers’ health is even more crucial. Thus, it is important to evaluate and possibly improve parental mental health, it being 1 of the strongest contributors to adjustment in children with chronic diseases (18). The mothers of children admitted for gastrostomy placement reported high psychological distress compared with the mothers of children with esophageal atresia (19). Eighteen months after gastrostomy placement was, as hypothesized, maternal psychological distress significantly reduced. Also, stress related to concerns for the child's feeding problems (intrusive stress) decreased.
Maternal stress related to concerns for the child's feeding problem (intrusive stress) influenced the mother's overall psychological distress. The intrusive stress was reduced already 6 months after gastrostomy placement, whereas a significant reduction in overall psychological distress was not recognized until 18 months postoperative. One explanation can be that gastrostomy reduced the concerns for the child's feeding problems relatively instantly, whereas overall psychological distress takes a longer time to change. Mothers may also need time to acknowledge the gastrostomy and to familiarize with everyday care. Insecurity concerning the care and use of the gastrostomy may result in absence of improvement in maternal overall psychological distress 6 months after gastrostomy placement.
We registered a positive effect of gastrostomy on maternal psychological distress that is in accordance with other reports of reduced demands on caregiving and improved parental quality of life after changing from nasogastric to gastrostomy tube feeding (20–22). Despite the recorded positive effect on maternal well-being, the parenting stress did not change after gastrostomy placement. Comparing the level of parenting stress in our study, the mothers had higher stress than mothers of preterm and term 1-year-old infants (23), but less parenting stress than mothers of 11-year-old children with asthma or epilepsy (24). Furthermore, The PSI manual presents scores from a normative sample, which is in the same range as the PSI scores in our study (11). This may imply that the child's feeding problems do not influence parenting stress in mothers as much as it influences the mother's psychological distress.
We found that the child's health was mainly unaffected by gastrostomy placement, although mothers reported improved quality of life for the child. This is supported by other studies (20,22,25,26), although Mahant et al (27) found no improvement in child quality of life after gastrostomy placement, but the parents in that study reported that the gastrostomy had a positive effect on their child's health.
The percentage of children with low weight-for-height percentile was not significantly reduced. In the present study we did not register detailed weight change in each child, so it was possible that most children experienced weight gain, but not enough to reach normal weight. Many studies have shown the effect of gastrostomy tube feeding on growth (8,28,29). Before and after gastrostomy placement, the majority of children were mainly tubefed. We have published that caregivers report an increase in oral intake after gastrostomy placement (25), but this increase does not result in change in main nutritional route. We would expect that some of the children will continue to increase their oral intake, and may in the future be able to remove their gastrostomy tube. It is important to instruct the parents to continue to feed the child orally when safe. Studies have reported that parents often feel depressed when not being able to feed their child orally and thus depriving their child for social activities with food (30). Generally, feeding by mouth is an important social activity that parents feel their child will miss when they are tubefed (31).
Peristomal complications were a major problem, and during the study period all of the children experienced at least 1 peristomal complication. All of the mothers got information from a stoma nurse during the first hospital stay, but no systematic follow-up of the stoma was offered. We hope that a systematic follow-up of the gastrostomy complications could have reduced these problems; however, despite stomal problems, the mothers felt that the gastrostomy was a “good thing.” Concerns for the child's feeding problems seem to have a greater effect on the mothers than managing the peristomal complications. Although we did not find peristomal complications to affect maternal psychological distress or parenting stress, the high rate of peristomal complications is important and needs to be addressed.
Many parents are reluctant to gastrostomy placement in their child. The broad recognition of maternal psychological health as a foundation for family well-being speaks to support mothers in caring for the chronically ill child. Knowing that placement of a gastrostomy will reduce mother's psychological distress is important and should also be notified when prioritizing children for surgical service; however, even if we know that better maternal health will improve the child's situation, it is important to consider if it is justified to administer a surgical procedure to decrease maternal stress. Our results imply that somatic complications do not increase maternal psychological distress, but we cannot say for sure that peristomal complications do not worsen the child's health. The mothers in our study did, however, report improved overall situation for the child, so our conclusion is that the complications following gastrostomy placement do not have a major influence on the child's health.
In the present study the response rate is rather low (34/58 = 59%) and only 19 mothers answered questionnaires at all 3 occasions. Statistically, we used linear mixed model because this method assumes that missing observations are “missing at random.” “Missing at random” implies that given the observed data, the missingness mechanism does not depend on the unobserved data (32). One major problem with a low response rate is that those answering may not be a representative selection of the whole group (selection bias), for example, responders are more resourceful than nonresponders. We have compared the groups that did respond and those that did not respond at the different time points and did not find any major differences concerning sociodemographics or psychometric scores preoperatively. Thus, based on these results we assumed that missing observations were missing at random. Another concern when using questionnaires at 3 different time points is changes in reliability over time. The GHQ has been shown to have a better test-retest reliability when used in a population with high prevalence of disorder than in the general population (12). Both PSI and IES has shown good stability, but only few studies have investigated the test-retest reliability and with limited number of participants (11,16). It is necessary to explore the test-retest reliability with larger studies to assess that the questionnaires are reliable over time.
The present study confirms that gastrostomy in children reduces maternal psychological distress despite a high rate of peristomal complications. The mothers also reported improved quality of life in the children.
1. Mensah FK, Kiernan KE. Maternal general health and children's cognitive development and behaviour in the early years: findings from the Millennium Cohort Study. Child Care Health Dev
2. Sleigh G. Mothers’ voice: a qualitative study on feeding children with cerebral palsy. Child Care Health Dev
3. Pedersen SD, Parsons HG, Dewey D. Stress levels experienced by the parents of enterally fed children. Child Care Health Dev
4. Hazel R. The psychosocial impact on parents of tube feeding their child. Paediatr Nurs
5. Raina P, O’Donnell M, Rosenbaum P, et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics
6. Thomson M, Rao P, Rawat D, et al. Percutaneous endoscopic gastrostomy and gastro-oesophageal reflux in neurologically impaired children. World J Gastroenterol
7. Hament JM, Bax NM, Van DZ, et al. Complications of percutaneous endoscopic gastrostomy with or without concomitant antireflux surgery in 96 children. J Pediatr Surg
8. Craig GM, Carr LJ, Cass H, et al. Medical, surgical, and health outcomes of gastrostomy feeding. Dev Med Child Neurol
9. Sullivan PB, Juszczak E, Bachlet AM, et al. Gastrostomy tube feeding in children with cerebral palsy: a prospective, longitudinal study. Dev Med Child Neurol
10. Kawahara H, Mitani Y, Nose K, et al. Should fundoplication be added at the time of gastrostomy placement in patients who are neurologically impaired? J Pediatr Surg
11. Abidin RR. Parenting Stress Index. Odessa, FL:Psychological Assessment Resources Inc; 1995.
12. Goldberg D, Williams P. A User's Guide to the General Health Questionnaire GHQ. Berkshire:The NFER-NELSON Publishing Company Ltd; 1988.
13. Ehrlich TR, Von Rosenstiel IA, Grootenhuis MA, et al. Long-term psychological distress in parents of child survivors of severe meningococcal disease. Pediatr Rehabil
14. Thompson MJ, Stevenson J, Sonuga-Barke E, et al. Mental health of preschool children and their mothers in a mixed urban/rural population. I. Prevalence and ecological factors. Br J Psychiatry
15. Huppert FA, Walters DE, Day NE, et al. The factor structure of the General Health Questionnaire (GHQ-30). A reliability study on 6317 community residents. Br J Psychiatry
16. Horowitz M, Wilner N, Alvarez W. Impact of Event Scale: a measure of subjective stress. Psychosom Med
17. Gokbayrak NS, Thelemaque LD, Itzkowitz SH, et al. Descriptive characteristics of a colon disease family registry at an urban hospital. Cancer Epidemiol
18. Drotar D. Relating parent and family functioning to the psychological adjustment of children with chronic health conditions: what have we learned? What do we need to know? J Pediatr Psychol
19. Faugli A, Emblem R, Veenstra M, et al. Does esophageal atresia influence the mother-infant interaction? J Pediatr Surg
20. Sullivan PB, Juszczak E, Bachlet AM, et al. Impact of gastrostomy tube feeding on the quality of life of carers of children with cerebral palsy. Dev Med Child Neurol
21. Petersen MC, Kedia S, Davis P, et al. Eating and feeding are not the same: caregivers’ perceptions of gastrostomy feeding for children with cerebral palsy. Dev Med Child Neurol
22. Samuel M, Holmes K. Quantitative and qualitative analysis of gastroesophageal reflux after percutaneous endoscopic gastrostomy. J Pediatr Surg
23. Kaaresen PI, Ronning JA, Ulvund SE, et al. A randomized, controlled trial of the effectiveness of an early-intervention program in reducing parenting stress after preterm birth. Pediatrics
24. Chiou HH, Hsieh LP. Parenting stress in parents of children with epilepsy and asthma. J Child Neurol
25. Avitsland TL, Kristensen C, Emblem R, et al. Percutaneous endoscopic gastrostomy in children: a safe technique with major symptom relief and high parental satisfaction. J Pediatr Gastroenterol Nutr
26. Smith SW, Camfield C, Camfield P. Living with cerebral palsy and tube feeding: a population-based follow-up study. J Pediatr
27. Mahant S, Friedman JN, Connolly B, et al. Tube feeding and quality of life in children with severe neurological impairment. Arch Dis Child
28. Sullivan PB, Alder N, Bachlet AM, et al. Gastrostomy feeding in cerebral palsy: too much of a good thing? Dev Med Child Neurol
29. Cook S, Hooper V, Nasser R, et al. Effect of gastrostomy on growth in children with neurodevelopmental disabilities. Can J Diet Pract Res
30. Enrione EB, Thomlison B, Rubin A. Medical and psychosocial experiences of family caregivers with children fed enterally at home. J Parenter Enteral Nutr
31. Mahant S, Jovcevska V, Cohen E. Decision-making around gastrostomy-feeding in children with neurologic disabilities. Pediatrics
32. Ibrahim JG, Molenberghs G. Missing data methods in longitudinal studies: a review. Test