Assessment of parent/caretaker satisfaction with child and adolescent mental health services in a tertiary care setting

Introduction: Service users' views in Psychiatry are sought globally to make services more responsive to patients' needs. The views of parents are essential in the evaluation of the quality of care provided by child psychiatric services. There has been minimal research on Parent/ Caretakers satisfaction with the Child Psychiatric services in Pakistan. The objective of this research is to measure the frequency of parent/caretaker satisfaction with child and adolescent mental health services in a tertiary care setting and its association with various demographic


Introduction
Psychiatric disorders are common in Children and Adolescents with a 20% prevalence. 1 Pakistan harbors one of the youngest populations in the world. 17% of children in Pakistan suffer from common mental disorders in primary schools. 2 Specific diagnoses remain unclear in children but criteria of psychiatric disorders are fulfilled as they reach early adulthood. 3 It is fairly established that mental disorders in adolescence are a predictor of mental illness in adulthood. 4 This presses the need for sensitizing parents, teachers, and doctors so that timely referral can be ensured to prevent the development of critical illness. 5 It requires a holistic approach that picks up disorders in different settings such as home, school, and primary settings. 6 The concept of patient satisfaction in child and adolescent psychiatric care is still underdeveloped and that few valid instruments have been developed to measure the concept. The perception of quality of care differs among parents and children. 7 In the case of children with mental health problems, the stakeholders not only include the children but their parents or caretakers also. Attention Deficit Hyperactivity Disorder 8 , Learning Disability, Autistic spectrum disorders 9 , Epilepsy 10 , Depression 11 are the disorders where treatment strategies involve the active participation of the parents and caretakers. Easy accessibility and involvement of parents in therapy are strong predictors of parental experiences with outpatient Child and Adolescent Mental Health Services (CAMHS). 12 The parents' satisfaction or dissatisfaction depends on whether parents see themselves as experts or non-experts on their child's situation and their opinions on the goal of the intervention or of the services they received. 13,14,15 Parent satisfaction is influenced by healthcare settings, technical management, interpersonal care, and staff interactions. 16 Families' satisfaction with healthcare services needs to be an integral part of family interventions. 17 Parent assessment of outpatient child and adolescent mental health services (CAMHS) is now part of the Norwegian quality indicator system. 18 In Malaysia, the latest National Health System Review (NHSR) has highly recommended a study on client satisfaction and deemed it essential to improve the efficiency of the current services. 19 Unfortunately very little is known about the issues considered important to the Child and Adolescent psychiatric patients and their caretakers/parents from developing countries like Pakistan. Addressing these issues would be a great help in improving doctorpatient relationships, patient satisfaction, caretakers/parents satisfaction, and compliance with treatment. Child and adolescent psychiatric unit of Benazir Bhutto Hospital, which has a large catchment area, covering the districts of Rawalpindi, Chakwal, Attock, Jhelum, and those of Azad Jammu and Kashmir in addition to other areas like Khushab, Abbottabad, and Gujrat with an average number of patients offered outpatient care about 3500 per annum. The current study aims to address the satisfaction level of parents/caregivers of children and adolescents with the psychiatric services in the Child Psychiatric Unit at the Institute Of Psychiatry, Benazir Bhutto Hospital, Rawalpindi, and finding an association between demographic variables and level of satisfaction to improve patient and caretaker's satisfaction and compliance to treatment.

Materials and Methods
This cross-sectional study was conducted from 20 th February 2014 to 19 th August 2014 at the Child Psychiatry Unit of the Institute of Psychiatry, Benazir Bhutto Hospital, Rawalpindi. A sample size of 130 subjects was calculated by using WHO sample size calculator; taking confidence level 95 %, anticipated population proportion 68.3% and absolute precision required 8%. 20 Non-probability, consecutive sampling was used to include Parents/Caretakers of those children whose age is ≤ 16 years. The satisfaction was assessed upon their second visit during the time period of study. All adult caretakers/parents from both genders aged ≥18yrs but <65years were included. Subjects were excluded if they were mentally retarded, had severe cognitive impairment, serious co-morbid physical illnesses like cerebrovascular accidents and frank psychosis. The subjects were also excluded if they could not understand the Urdu language. Consent for the study was obtained from the subjects and they were given a choice to leave the study at any point. Demographic details of the participants were obtained through a proforma. Parental/ Caretakers' Satisfaction Questionnaire was then orally administered in the native language (Urdu) for the administration of the scale in the given population. Parent/ caretakers satisfaction questionnaire is a 20-Item Questionnaire that was adopted, modified, and translated from the original 27 item Questionnaire with permission from the authors of a German study 20 . The 20 questions were divided into three domains like Original Questionnaire. These domains included 7 Questions related to Infrastructure and Organization, 9 Questions related to Professional Competence (of whom 2 were related to the staff and 7 were related to the doctor) and 4 Questions were based on the Assessed result. 7 Questions not applicable in our setup were omitted. The questionnaire was translated into the Urdu language. A pretest was performed by giving an Urdu questionnaire to 30 parents/ caretakers to check for potential difficulties in the level of understanding and finding out if some statement is not clear. Cronbach's alpha was 0.910 which shows high reliability. Means of all items ranged between 3.33 to 3.93 which is a good indicator for satisfaction. Each item is scored on a 4point Likert scale with a score range of 1-4, with 1 meaning 'very unsatisfied', 2 meaning 'unsatisfied', 3 meaning 'satisfied', and 4 meaning 'very satisfied'. The overall satisfaction score was measured by summing up all the individual responses yielding a score range of 20-80. ≤20 is the score signifying "unsatisfied", 21-60 "satisfied" and >60 "very satisfied". Data collection was also completed by making a telephone call to those parents/ caretakers who underwent a second visit during the study period but didn't fill questionnaire then but consented to be part of the study. Data was entered and analyzed using SPSS -16. Frequencies and percentages of categorical variables were calculated. Chi-square (χ2) test was used to find association of age of informant, informant's relationship with the child, employment status, monthly income, and educational status with the level of satisfaction. The p <0.05 was considered significant. Table 1 shows the frequencies of various demographic variables of our participants like the category of parent/caretaker who came with the child and filled satisfaction questionnaire, their age groups, their educational status, their employment status, and monthly income in Rupees. Out of 130 individuals, 56% were mothers (n=73), 33% fathers (n=43) and 11% caretakers (n=14). With respect to age groups 21.5% (n=28) of the parents/caretakers were between 18-30 years of age, 50% (n=65) were between 31-42 years of age, 26.2% (n=34) were between 43-55 years of age and 2.3% (n=3) were between 56-64 years of age. Most of the participants were educated till Matric i.e. 30% and the least number of participants qualified as high as post-graduation i.e. 4.6%. The majority were earning less than Rs. 10000 (35.4%). 43.8% (n=57) were employed and rest were unemployed.  Table 2 shows the frequency of parents/caretakers satisfaction with child psychiatric services. Amongst 130 participants 73.1% (n=95) were very satisfied (satisfaction level>60), 24.6 %( n=32) were satisfied (satisfaction level between 21-60) and only 2.3 %( n=3) were unsatisfied (satisfaction ≤20). Figure 1 shows the bar chart representation of the frequency of satisfaction of parents/caretakers   Parents of children aged zero to six appeared more satisfied than parents of older children. Our findings didn't find any association between the age of the child and parental satisfaction. Garland et al assessed both youth and their parental satisfaction with Usual Care Psychotherapy at the level of entry and six months follow-up visit. 23 Youths and parents reported generally high satisfaction, but the correlation between them was low. Our study findings can be supported by Bladder's study 24 . It was a longitudinal assessment of parental satisfaction of inpatients children and adolescents at 3, 6, and 12 months after discharge. At discharge the satisfaction level was high but over the course of 3, 6, and 12 months significant decline in satisfaction level was attributed to increased behavioral problems in children. This finding was not possible to be obtained as our data was collected at a cross-section. Our study didn't find any correlation between sociodemographic variables and satisfaction level. This finding is supported by Holmboe et al study which evaluated the predictors of parents' experiences with three aspects of outpatient CAMHS. 25 Organisations of the clinic such as easy accessibility and engagement were much stronger predictors of overall satisfaction than demographics. Similarly, another study by Bowling et al measured patients' expectations which revealed that most patients expected proper information, punctuality by doctors, and provision of knowledge in a simple and easy manner 26 . A Massachusetts Child Psychiatry Access Project Parent Satisfaction Study revealed that among 69% of parents 50% agreed or strongly agreed that their child's condition had improved following their contact with the services and the services were in accordance with their needs. 27 Zolaly studied parental satisfaction with physicians' communication skills. Most of the respondents were mothers (85%) like our study (73%). The average satisfaction scores for relationshipbuilding were high for mothers and children with chronic diseases 28 .

Results
Our study results were supported by a recent study on Treatment Satisfaction with CBT in adolescents which showed a high treatment satisfaction in the patient, parent, and the therapist ratings (completely/predominantly satisfied: 87.8% in the patient, 92.0% in the parent, and 64.0% in therapist ratings).
Patient-related or socio-demographic variables were not relevant predictors of treatment satisfaction. 29 Our local literature is scarce with respect to parental satisfaction studies but few studies are available to compare our study's findings. Khan et al's crosssectional study on parents attending pediatric emergency in Mayo Hospital Lahore depicted the mean satisfaction level to be 69.57%. 30 These findings are closer to our satisfaction findings where 73.1% of parents were very satisfied. The difference is in the type of services assessed. Paediatric emergency is far different from Paediatric Mental Health OPD whereby parents' expectations are different. Ejaz et al's study focused on the communication skills of doctors in the paediatric department which are a major determinant of parent satisfaction 31 . Amongst various findings, the one that was consistent with our unsatisfied parents/caretakers was lack of parental understanding as one of the important reasons for lack of effective communication and subsequent low level of satisfaction. Though in our study it was just an observational finding and no statistical significance was found.
Our study findings can be compared to a study by Gani et al on Patient satisfaction with Psychiatric services which was conducted in Benazir Bhutto Hospital, Rawalpindi but in the adult population 32 . Among the participants, 72% were mostly satisfied, 18.7% mildly satisfied, and 9.3% dissatisfied with psychiatric care. Although age was significantly associated with satisfaction in adults however no such associations could be found in our study. The strengths of the study were that it was the first study of its kind conducted in the child and adolescent psychiatry department. Measuring parent/caretakers satisfaction could provide well-grounded guidance for further development of Child and adolescent mental health care systems since parent satisfaction is a basic driving force behind a child's compliance which is essential for the improvement of mental health disorders. Further questions can be added based on cultural background and expectations of parents as well as if new services are introduced with time. The Questionnaire can be translated into other languages to take into account those who do not understand either of the two languages. The Parent/caretaker Satisfaction Questionnaire is brief, simple, and easy to administer in our population. There are a number of limitations. The results of this study cannot be generalized to a bigger population since the sample size was small. The study didn't consider the nature and severity of mental disorders in children which can have a major bearing on parental satisfaction or otherwise. It is very possible that parents and caretakers were hesitant to critically analyze the services out of politeness or fear of consequences. Some of the participants' native language was not Urdu which created difficulty for them to understand the exact meaning of even basic questions that had to be further simplified according to their level of understanding. This study has various implications for future research since measuring parents/caretaker's satisfaction can provide solid ground for further development of CAMHS as parents' satisfaction is the driving force behind a child's compliance and treatment. Further questions can be added to this scale keeping in mind various childhood psychiatric disorders as well as cultural understanding and expectations of parents.

Conclusion
Our study revealed a high level of parent/caretaker satisfaction with Child and Adolescent mental health services in a tertiary care setting. No significant association was found between socio-demographic variables and parent/caretakers' satisfaction. Further research is needed in this area to find out the association of individual factors with the level of satisfaction as well as factors that can improve quality of care.