Stage One — Formative Qualitative Study
Consultation Meetings with Stakeholders. A total of 34 stakeholders including the representatives of government bodies, NGOs, and caregiver attended the meeting. Two representatives from WHO and Autism Speaks, and all MTs also attended. The following section reports their perspectives on the WHO-CST in the first adaptation meeting.
Sustainability and the Local Context. The stakeholders agreed that sustainability should be supported by building the programme into existing services in the health care and social service systems, such as a community-based rehabilitation programme, a community-based child health developmental service or other types of health services. There are 19 Parent Resource Centres (PRCs) providing community support for the parents and caregivers of persons with disabilities throughout the 18 districts in HK. It was suggested that parents and caregivers could participate in the WHO-CST-HK delivered by staff who run the PRCs and caregivers could also exchange lived experience and establish mutual support.
Opportunities. There are a growing number of health care and social services for families of children with ASD or developmental delays or disorders. Many stakeholders were, therefore, supportive that implementing WHO-CST-HK is essential as an intervention for the entire community. The implementation should be “as inclusive as possible” and should address the needs of as many families as possible:
(For) child and adolescent psychiatric services, we have a severely long waiting time, hence there is an extreme demand for services.
Most parents are misinformed or uninformed about what is really happening in HK. Many parents are deprived of information…Let’s find a way to reach those who are in need. The very purpose of the (WHO-CST) programme is to discover how to reach out to people at a low cost, make it sustainable, and make it effective…so (let’s) make it inclusive.
Many parents in HK are in need. No matter whether their children are diagnosed with special needs or not. They need these parenting and play skills.
In addition to fulfilling familial needs, one stakeholder highlighted that teachers in kindergarten and primary schools also need to learn the skills offered by the WHO-CST-HK:
To a certain extent, teachers also need these skills, as they may not be intensively trained in (the) application of behavioural management techniques or communication techniques with children.
Home visits were identified as a barrier for implementing the WHO-CST-HK. It was mentioned that some families may be over-concerned about confidentiality and reluctant to, or refuse to, invite “strangers” to visit their homes for evaluation and the provision of services. However, some stakeholders reflected that in their experiences of conducting parent training programmes, home visits are important to build up initial engagement between the interventionists and the caregivers. Families welcome home visits if the purpose has been explicitly stated at the outset. It was suggested that interventionists could evaluate whether the caregivers could apply the techniques learned during sessions in real-life situations:
We conduct the home visit again to know what they have learned from the group and how they apply it in their home settings.…So we understand that home visits are very important to understand the family and their needs. Some of my colleagues (who) conducted home visits will know, in a real living environment, what kinds of strategies they can apply or cannot apply.
Challenges. Although the WHO-CST-HK was generally well-accepted by most stakeholders, some challenges regarding its sustainability were identified. One challenge was related to the perceptions of interventionists on programme implementation in the primary health care settings. One stakeholder pointed out that some of the potential interventionists in the health care settings are nurses who may not be ready to shift their delivery of care from tertiary sectors to primary sectors:
The health care services in here have been skewed in secondary and tertiary care…the Hospital Authority is now shifting the services to a more community-based level, (focusing more) on maintenance care and preventive measures…It was a great challenge, (since) not all psychiatric nurses are ready to equip (themselves) to deliver services to primary health care. It is a new chapter for us to reach out and to collaborate with community partners. It is another set of competencies that they need to develop and to communicate.
Training and Supervision of Master Trainers and Facilitators. It was suggested that MTs could be general or specific health care providers, such as pediatricians, psychologists, mental health nurses or counsellors, while the facilitators could be community health workers or peer caregivers. Contrasting views were revealed among the stakeholders regarding the need for professional qualifications for the interventionists (i.e., either master trainers or facilitators). Some stakeholders supported the idea that peer caregivers could be the interventionists (i.e., facilitators), given that they are more willing to share their caregiving experiences, are committed to providing services to their peers, and willing to build up social connections within their peer groups:
We welcome parents or nonprofessionals as facilitators. Many years before we ran our training programmes in parent resource centres, and we trained a group of parents. They went through the difficulties and they want to be the volunteers to partner with other parents of children who are newly diagnosed with ASD. So, we provide some training for them and they became the coaches for other parents…. It’s very meaningful as many years afterwards, these parents still keep contact with the coach, such as “yum cha”, and they still support each other in the community in the long run.
Parents could also be the facilitators…Peer parents regularly come to our centres and make some “care calls” to other parents. We also think that facilitators who are the parents of children from different age groups are good because ASD is a lifelong condition. At different life stages, parents encounter different challenges, and they could share their experiences of what they have gone through, so that parents could get some mutual support.
Nevertheless, one stakeholder reflected that some parents in HK prefer professionals to lead the training programmes. She also noted that from her hosting institution experience, which had provided training to parents in HK, it was difficult to engage them due to their busy working schedule:
In parents’ minds, they trust professionals. If the facilitators are not professionals, they may not trust the programme, (for example), ….it is difficult to engage caregivers for sustainable training due to their family and work engagements.
Some stakeholders suggested the need for ongoing training and supervision after the training of MTs offered by WHO and Autism Speaks. Various strategies were suggested based on the stakeholders’ experiences of organizing parent training programmes, such as reviewing videotaped sessions and online training:
Ongoing training and sharing among our staff are very important because during the process when we hold different groups, we may come across different types of difficulties or parents’ issues. (Hence) we continue with in-service training; we videotape some sessions when running groups. New staff and programme facilitators can watch the videos to learn to facilitate the skills that are more appropriate for our parents.
We may have difficulty in officially releasing staff members to attend the five-day training. It may help if the training can be delivered in another kind of format, like e-training or online training.
Adaptation and Implementation Plan. In the planning meeting, several stakeholders raised concerns regarding the need to limit the number of group sessions (e.g., from nine weekly sessions to six weekly sessions) and to shorten the duration of each group session (e.g., from 2 hours to 1 hour) due to the caregivers’ busy schedules. A few stakeholders, in particular, parents’ representatives supported following the original version of the WHO-CST programme, rather than bringing in preconceived ideas about the programme (e.g., long schedule) without trying out the first round of actual implementation.
Let us not think about efficiency version or whatever…let’s just do the full version because that’s what it is basically designed for…Adaptation, to me, is to make the programme more efficient, try to connect with people more efficiently and meaningfully. Other than that, we should not make it more compromised. Let us find out and have it implemented in full and see…
Just go straight away, to see how it (the WHO-CST programme) implements with parents as it also depends on the facilitators, how they (parents) interpret and localize it into daily life situations. Adaptation and translation are an ongoing process, with feedback not just from the parents, but also from the facilitators and all stakeholders.
One of the important aspects of the WHO-CST programme is to collect and analyze the data to examine the feasibility and acceptability of the locally adapted programme. These data can also provide core information to guide implementation and the possibility of scaling up the WHO-CST to an international level. However, there were concerns related to the need for ongoing research among service providers in the future. One stakeholder found that it could be a challenge for social workers and other health care providers to be involved in a research study as they perceived that research is not related to service provision. Hence, frequent communication is required to allow staff to understand the rationale for the research:
Sometimes it is difficult for us to have an randomized controlled trial (RCT) study because most of the social workers and frontline workers do the frontline work with the parents only. But for the research study we must commit to lots of things, some administrative work, and some preparatory work…not really related to direct service. So, we must communicate with our staff and colleagues a lot first…we must educate our staff that it is necessary to do research. Sometimes we may forget about the study as we focus on the service.
A few stakeholders raised concerns regarding the difficulty of recruiting eligible and adequate numbers of families to participate in the pilot stage, which is a randomized controlled trial study. One stakeholder, however, shared her experience of collaborating with a university institution to conduct a trial study of a parent-mediated programme and stated that recruiting subjects was not that difficult if the study was carefully monitored and explained to the caregivers in detail. The parents would, in those circumstances, be aware of the importance of commitment throughout the study:
Ongoing monitoring is very important…in the process it is also important to let our target parents know what we are doing because sometimes it is easy for them to drop out. Sometimes their child is sick, or other things. They may have to withdraw, or they may have to skip some sessions. So, at the start, we tell the parents what we are doing and there is research behind it…I think we must let the parents know the importance of commitment.
The programme was regarded as an essential intervention for the local community in response to the rising trend of children with ASD or developmental delays or disorders. Other favourable factors supporting the sustainability of the programme include the availability of venues to support the group sessions and the acceptability of conducting home visits among HK Chinese families. Some foreseeable challenges were revealed during the pilot planning meeting, such as the difficulty of promoting the programme because of the variety of parent training programmes already available.
Review of Draft World Health Organisation Caregiver Skills Training Materials. From April to July 2019, the research team, the MTs, and a few invited individuals, including caregivers, reviewed all back-translated WHO-CST materials and drafted the localized version. The back translation was completed by two trilingual undergraduate students majoring in psychology and counselling who had a strong interest in ASD and who were supervised by the research team. An official written language instead of a dialect version was used so that the materials could be shared with other Chinese societies. In the review, cultural differences, contextual and methodological considerations, and issues of feasibility and acceptability were addressed, such as whether use of particular wording was acceptable to the local community. Most of the content remained consistent with the original version and only a few key terms were debated. The terms “routine”, “show and say” or “show and tell”, and “set-up environment” were adapted to the local language. The illustrations of culturally diverse characters and settings remained unchanged. Character names were translated but not altered to local names. Only minimal changes were made to the translated version as suggested by the WHO17.
Need Assessment Focus Group Interviews of Caregivers of Children with Autism Spectrum Disorder. A total of 15 caregivers (three Nepalese, twelve Chinese), who were mothers, participated in the focus group interviews, one in group 1, two in group 2 and three in group 3, 4, 5, and 6, from 3 to 22 December 2018. All the caregivers identified themselves as their child’s primary caregiver. Among the caregivers (age M=38.1, SD=2.2, range: 34–41), one was a working mother (part-time) and the rest were housewives. Most caregivers (n=14) had lived with the target child since birth and belonged to nuclear families (see Table 1). They were asked for their view on the acceptability and feasibility of the programme.
All had participated in various types of parent training programmes, such as the Preschool Autism Communication Trial (PACT) (n=2); Happy Parenting (n=2); Louis Programme (n=2); The Hanen Programme (n=1); The SCERTS® Model (n=1); Applied Behavioural Analysis (n=1) and a mindfulness programme (n=1).
All participants in the focus group interviews supported the implementation of the WHO-CST programme in HK. Since the majority (n=12) had attended various types of parent training programmes, they perceived the WHO-CST programme as “another choice for parents” and “like other supporting programmes organized by NGOs”. One mother, who had participated in the Preschool Autism Communication Trial (PACT), mindfulness course, and Happy Parenting programme, expressed her views as follow:
Parents often need to make lots of effort, but for those who have not received any training, they will not know the cues for helping their child, so that is why they need to attend the course and learn.
Another mother, who had participated in the Social Communication, Emotional Regulation, Transactional Support (SCERTS) model course, shared her views:
If (we) could search for other courses, they will usually introduce what autism really means to us. It is just a sharing only; it will not be as practical as you just mentioned.
Nepalese mothers emphasized the need for WHO-CST because of the language barriers of attending other training programmes, which were all delivered in Chinese:
We learned the techniques from teachers at schools in Chinese…they provide translators to us. But the practical part is in Chinese and that is the major problem for us. At home we used English and my child may not respond to that. So, we messed up everything.
Apart from showing their appreciation and support towards the WHO-CST programme, the participants shared their perspectives on the implementation process of the programme, covering the following areas: (1) directions of implementation and sustainability; (2) inclusion and exclusion criterion for target participants; (3) screening and recruitment procedures; (4) programme content; (5) attributes of MTs and facilitators, and (6) assessment method for impact measurement – videotaping. Furthermore, several suggestions for improving the acceptability and sustainability of the programme were given by these caregivers.
(1) Directions of implementation and sustainability
Be specific and practical. Many participants (n=12) highlighted the importance of establishing clear goals and applicability to real-life practice at the beginning of promoting the WHO-CST programme or scaling up to the territory level. These participants shared their experiences of attending multiple parent training programmes in their lifetime, but finally they found these programmes were too theoretical and could not help their child when applying their skills in real situations. Caregivers are looking for programmes specifically addressing their needs and challenges in caring for their child:
The goal (of the WHO-CST programme) must be made much clearer, what target participants are looking for, because sometimes I found after I participated in a programme, oh (I) joined the wrong course, a wrong one.
The useful stuff I will take it, but not just theoretical inputs, because after you listen to them (note: skills learned from the training programmes), during that moment you may understand, but as time goes by, you would forget. It’d great if that moment it is useful.
One NGO, (it costs) one hundred dollars only (note: course fee), but I still don’t want to join, as it’s not attractive and has no practical use…it’s better than nothing, but if (those programmes) are more target-orientated for each individual child’s situation that’d be more attractive.
Be universal. Four participants were thinking of whether the WHO-CST could be a universal parenting programme that could serve the families who are in need. One mother, who had been living in Canada since being a teenager, had recently moved to HK. She found that many families in HK with a child with ASD were not yet prepared to receive services, while those who were ready to commit to the WHO-CST (e.g., complete the group sessions and home visits), could access other resources and may not be the ones who “really need the service”:
ASD families have ASD characteristics, right at the beginning you need us to commit to so many tasks (note: home visits, video recordings). I believe that you just simply scared people away. Then that means you would have only those families who are opened-up, and even without your programme they could still access services, they are able to search for resources that could support them.
Highlight the uniqueness of the WHO-CST in Hong Kong. During the interviews, almost half of the participants (n=7) asked about the uniqueness of the WHO-CST programme when compared to the other parent-mediated programmes in HK. Those who had joined other programmes before asked, “why do we need an additional one?” Some caregivers mentioned that for improving knowledge, they could search for information from the internet; for self-care, they could join mindfulness courses and other relaxation exercises; for behavioural skills training, they could also join PACT, Positive Parenting Programme (Triple P) or other training workshops.
Every year the school provides similar stuff (note: programme or course) to us, then a single education talk will be fine, it’s just similar, so why attend? Even (we need to) attend nine sessions, so please don’t bother (me), so some parents may think in this way. Teaching parenting skills…in fact, hey they’re just all the same.
I do not know why the WHO needs to organize this programme? There are so many skills training programmes, and there is so much (information) online, up to the point that we cannot digest so much. If (you teach me) ten skills and I could use one to two skills at home, that could save my life, or relieve me. I think that is more important than that three-month WHO programme.
(2) Inclusion and exclusion criterion for target participants
Most participants (n=10) agreed that the child’s age range of 2 to 9 as one of the eligibility criteria for joining the WHO-CST programme was acceptable.
Yes, parents of children in different age groups need these supporting programmes. These services should not be discontinued when the child is at primary school.
At the beginning (when the child) is aged 2 years, (he/she) would be alert to what the adults are doing, so it’s better to start (the programme) at the age of two. The golden period would be on or before aged 8. That’s why all the resources are cut at age 8 for the primary schools and you are required to seek (resources) yourself. They are thinking everything is fixed already. There’s no more about (the child) that can be changed, nothing can be changed. So for me, if the training could last till aged 9 it’s better.
(3) Screening and recruitment procedures
From caregivers’ perspectives, whether they are eligible to participate in parent training programmes is due to “chance”, while how to increase the reach of the WHO-CST programme is another area of concern among the participants (n=5). One mother recalled her difficult experience of searching for appropriate training courses and she finally realized that her perception of “challenging the accuracy of the screening test” might be the reason behind this difficulty:
Why could I not find these courses at the very beginning? …Oh! Indeed, when we (note: participant and her husband) knew (the results), I think it was not that case, so we didn’t do anything, my husband and I thought it was impossible, we thought he does not have developmental delay, the assessment had problems…
Three participants proposed that, in addition to promoting the WHO-CST programme in NGOs, maternal child health clinics (MCHCs) under the Department of Health and kindergartens could be sites for recruiting eligible caregivers. Most caregivers and their children need to receive services from MCHCs, and it is mandatory for the child to attend kindergarten.
I think in MCHCs we need to have a pamphlet (about the WHO-CST programme) that means to alert the parents, so if you encounter your child’s situation, you could search for these programmes to offer help, but it is unnecessary to wait for the services provided by Child Assessment Centre, which means it would be a long waiting journey.
To make the kindergartens better aware (of the child’s problem), if some teachers have such alertness, and (they know) the child has such problems, they could tell the (parents) there is a programme (called WHO-CST programme) and suggest they participate in that, which could save time and resources.
Support the use of the WHO Ten Questions Screen to identify eligible participants. Use of the Ten Question Screen, a 10-item questionnaire as a screening tool, was welcomed by the majority of participants (n = 11). By using this screening tool, the participants perceived that the health and social service providers trusted the parental reports of the child’s developmental problems, and it increased the chance of participating in the WHO-CST programme. In view of the lack of resources during medical consultations in MCHCs or CACs, some caregivers would rather exaggerate how difficult the child’s behaviour was at home in order to be diagnosed and offered appropriate resources. One mother described such experiences as traumatizing. If the Ten Question Screen could be used, caregivers perceived the tool to be user-friendly and the WHO-CST would not be limited to those families where their child had received the diagnosis. Those awaiting diagnosis by health care professionals could also receive the service.
I am so excited about what you’ve just mentioned (note: about the Ten Question Screen). I’d say please do not rely on those reports. Those reports are based on what the parents told (to the doctors) during the interview. Often parents would share what they perceived their child’s problems to be. Because of fighting for resources, (many parents) would rather seek for the reports, so if (you) want to serve the parents, the principle is to ask less. It’s not necessary to obtain so many child reports.
(4) Programme content
Programme setting, timeslots, and session number. Some participants (n =3) suggested that the venue for the group sessions should be convenient for them (e.g., near their home) and the preferable timeslots would be during weekday mornings (i.e., during the child’s school days). Nevertheless, half of the participants (n = 6) found that the group sessions arranged on a weekly basis would be “too rushed” or “too packed” for the caregivers. If the WHO-CST programme is a multicomponent programme, it was recommended to provide time for the caregivers to understand the materials and to practice in real-life situations:
Too rushed. I have not understood most of the materials and then the next session, the programme (sessions) are too packed, because every week we need to attend, (we have) to understand, to digest, and then to use them. It is very demanding.
Because for my child, it is not like an injection, it’s not like after the nine sessions that suddenly (my child) would know everything all in a sudden, it’s not like that, it takes time, or during practice if I encounter difficulties, I’d not know how to solve them...
One mother proposed that the group sessions of the WHO-CST programme could be arranged every other week:
The benefit (of arranging the programme) on a bi-weekly basis is it will not be too difficult, for travelling back and forth…otherwise I won’t have my own time, or time to rest. (I) won’t have time for the housework…
Home visits. Including home visits as one of the intervention strategies of the WHO-CST programme was actively discussed during the focus group interviews with contrasting views. For those participants who supported home visits, they perceived it as an opportunity for building up connections and trust in one-to-one relationships. More importantly, the interventionists (i.e., MTs and facilitators) could better understand the difficulties that the caregivers are encountering and offer specific intervention strategies:
You really must visit to his or her home, possibly (you) may realize lots of issues, and (the interventionist) could directly point out the issue, and demonstrate to you at once, (for example), how difficult it could be to help the child to wear a pair of shorts, even though for helping the interventionists, I think they could understand.
It’d better to have some “tailor-made” time for us, that means (we could) raise questions, such as how to manage our child’s problems, for the home visits, if some professionals could provide one-to-one service, that’d be appropriate. Because there are many training programmes that could serve general situations, but they’re not specific enough…
You come and understand what exactly the problems are currently facing each individual family, and then the trainer could know how to train the entire family as the ASD problem could be associated with the entire family unit.
One mother from an extended family suggested that interventionists may play a significant role in teaching other family members in managing the child’s problem.
Face-to-face (interviews) could allow the interventionist to get in touch with the entire family, teach the grandparents, or teach the father or the brother, so (home visits) are good, and the interventionist could observe the entire home environment.
Some participants hesitating about the home visits think that their living areas are too small and that may not be favourable for home visits. If the caregiver is living with other extended family members, such as grandparents, home visits may not be acceptable among these families.
You know the living space is small in HK, that means I may not (allow home visits), and for those living with grandparents, they may even refuse the home visits, and even three visits seem too much.
One mother raised a concern that the Chinese term for home visits symbolized that the child may not behave well at school:
With the term “home visit” I could feel pressurized, as in HK, the only issue when you need a home visit is because your child misbehaves at school. You’d immediately think of something bad (about your child).
(5) Qualities of master trainers and facilitators
Professionalism of MTs and facilitators is another concern raised by some participants (n=5). From caregivers’ perspectives, those who had attended various types of training programmes before expected MTs and facilitators to be skillful, knowledgeable, and down-to-earth. These caregivers did not want their child to be “tested” or “experimented on”:
Maybe for those so-called professionals who just received training from a lecture, (they) may not have much experience in managing a child, because studying and conducting real-life practice is different. I am expecting that at least they have experience in caring for these children, know how to play with them, and know how to communicate with them.
For those who just recently graduated and are just treating your child for the sake of doing an experiment, then please don’t. It’s not that I don’t want to spend the time. We don’t have much time to be spent (in this way). And I even don’t have time to tackle our child’s problem, so how come I would have time to spend for those so-called professionals.
(6) Assessment method for impact measurement – videotaping
Videotaping the child’s interaction with the caregiver as an assessment method of the WHO-CST programme was the issue that raised the most concern during the focus group interviews. Some participants thought that videotaping at home would make them feel uncomfortable because of the issues of privacy and confidentiality. Furthermore, a couple of enquires were raised among the participants, such as “what is the purpose of videotaping?”; “how would the videotapes to be handled?”; and “will the video records be disclosed for publicity, public education, reviewing with other caregivers during group sessions, and/or researchers to do the analysis?”.
I am so afraid, oh my god if you really did the video recording, how would you handle the tapes?
Because it’s just like taking off all your clothes. Let the others see what’s going on. Your home is so messy, or your home is that dirty. Parents do mind this, would have feelings of discomfort.
If video recordings are made I could not be that relaxed, and I’d considered the video records as taboo. There’ll be some requirements. (I) don’t feel very comfortable with that.
One mother raised another concern about whether videotaping could impact on the effect of the WHO-CST programme on caregiver-child interactions, given that the behaviour and emotions of children with ASD can fluctuate significantly.
The child’s performance could fluctuate, because even if (the child) is at home, for that moment, whether you could record that situation it’s hard to say. You may not really be able to see their improvements, and I think (that improvement) it’s just by chance, so I think you may not see the effect.
(7) Suggestions for improvement
At the end of the focus group interviews, the participants proposed several strategies that could improve the feasibility and acceptability of implementing the WHO-CST programme. Some participants suggested conducting a briefing session for all the eligible participants of the WHO-CST programme before the first round of home visits. This briefing session could particularly address the need for home visits and video recording so that caregivers would have a clearer idea of the whole implementation process.
Another noteworthy issue was related to ongoing support after completing the programme. Using follow-up calls, apps, focus group interviews, and establishing an online platform for the caregivers to share their caregiving experiences were strategies proposed:
After I complete the programme the service would be immediately cut off, so what shall I do? If it isn’t, we do need to have back-up, can approach the nurses or social workers. It could be apps, it could be very simple, just like these focus group interviews. (We) could have a very informal discussion, these could help the parents a lot…
There is a platform for us to share, if I encounter this problem, if I forgot something, or anything that (I) could do better…indeed I found (this support) is important.
Poor couple relationship is one of the problems that was raised by several participants (n =3). These participants found that their husbands find it difficult to accept that their child has ASD or developmental delays. They suggested that the WHO-CST programme content could also address couples rather than single caregivers.
My husband still doesn’t accept (the child as having ASD). It has been three years that he doesn’t accept it. The parenting strategies won’t be consistent with each other. There are lots of arguments throughout the day. An all-rounded (programme) would be better that serves couples, for one to two sessions that serve couples, it’d be great.
In summary, all the participants had experiences of participating in various types of parent training programmes. Most participants welcomed the WHO-CST-HK and felt it would fill the gap caused by increasing service demand for families of children with ASD, developmental delays, and developmental disorders. Nevertheless, the participants highlighted a few potential enhancements during the programme implementation. For instance, the programme aim needs to be specific, the content needs to be practical and universal, and serve families who are in need. The uniqueness of the WHO-CST programme, when compared to the rest of the existing local training programmes, should be emphasized.
Stage Two — Prepilot Field Test of the Adapted Materials
(I) Pre and post CST programme qualitative evaluation with focus group interviews
Thirty-eight caregivers of children with ASD joined pre-CST programme focus group interviews immediately after they had attended the briefing session at the HKU for joining the WHO-CST-HK between 23 March and 28 May 2019. There were seven participants in group 1, six in group 2, nine in group 3, three in group 4, four in group 5, six in group 6, and three in group 7. While some had proceeded to attend the CST prepilot sessions, others had terminated due to scheduling issues or were lost in the follow-up, resulting in 18 caregivers remaining to participate in three post CST programme focus group interviews between 22 July and 20 September 2019. There were five participants in group 1, two in group 2, four in group 3, three in group 4, and three in group 5. During both interviews, focus group guides developed by the WHO were used to direct the flow of the group discussion. The Chinese version of the guides was adapted by the postdoctoral fellow and circulated and agreed among all the MTs and the principal investigator. All focus group interviews were conducted by researchers of HKU with the assistance of the involved MTs.
Preintervention focus group
Through the focus group interviews with caregivers, and the major themes included 1) perceived benefits of the programme, 2) useful elements in the programme, 3) environmental and cultural barriers, and 4) major challenges and proposed solutions.
Prior to joining CST sessions, caregivers expressed hopes for improving communication between themselves and their child, better understanding the needs of their child, and preparing their child for social situations.
So I want to communicate more with (my child), firstly for more communication, and secondly to engage in paired reading more often.
…teach him how he should express himself and how he should act.
Some caregivers were expecting to learn skills that would better fit their own situation.
Usually, after learning skills from other courses, they are hard to implement back at home. Now that you will come to my home, I am hoping that you could tell me how to better train my child in my own setting.
Some caregivers were hoping to understand and manage their child’s inappropriate behaviour.
Sometimes he doesn’t like to wash his hair, he can throw a big tantrum like crazy. I want to learn something about it.
Many caregivers expressed hopes that home visits would help them in implementing the skills taught during sessions, as well as help them pick and choose the right skill to use. However, many of them came across the barrier of their other family members not supporting their decision to join the programme.
I and my wife hold different opinions on the matter. That’s why sometimes you will see me accepting certain situations, but she doesn’t. Sometimes I think it is right, but she does not, something about order. We also have an elderly relative at home who may be uncooperative at times.
Many caregivers understood that the older generation may have a different caregiving method and were worried that it might clash with skills taught in CST. In addition, caregivers lacked confidence in carrying out home practice. Caregivers expected the child to be uncooperative during practice and were not confident that they could apply the learned skills.
Even if you asked him, he won’t come over.
Most reported expectations were child-orientated, hoping that CST would directly impact on their child.
Postintervention focus group
During the postprogramme focus group interviews, five prominent themes emerged: 1) overall reduction in challenging situations, 2) improvement of caregiving skills, 3) management of own emotions as a caregiver and taking better care of themselves, 4) understanding and management of child’s inappropriate behaviours, and 5) home visits as a helpful element.
After participating in all the CST sessions, caregivers reported observing a significant reduction in challenging situations.
Initially we would fight over something constantly, but later in the programme, the fighting reduced. There is literally no more fighting over anything.
There is no third choice, nothing to choose.
Caregivers learned to offer only two choices, with no third choice for bargaining, and the child must pick between the two. As a result, many felt that they had improved on their caregiving skills. Caregivers also recognized the importance of managing their own emotions, particularly after the last session. They reported placing more focus on themselves, which helped them improve in caregiving skills. Caregivers indicated that CST helped them understand their child’s inappropriate behaviour from a different perspective:
Now that I have taken the course, I understand my child’s behaviour. I know what methods I could use to help him, now his (behaviour) improved. My angle and stance changed.
All caregivers also agreed that home visits were particularly helpful in enhancing caregiver skills. Many stated that they would like more time per visit, and some wanted to have a copy of their own video for revision and as an example for other family members.
(II) Pre and post CST programme quantitative evaluation with questionnaires
Forty-two caregivers joined six WHO-CST-HK groups in the prepilot. Approximately 80% of caregivers were female (age M=37.12, SD=4.16, range: 30–44), 21.4% of caregivers were male (age M = 39.44, SD = 6.82, range: 30–49). In general, for most of the chosen scales for evaluation, statistically significant differences were not found before and after the programme participation in the caregivers’ mental health and confidence in caregiving (see Figures 1 and 2, respectively). Participants found that most of the 12 sessions, and especially the home visits, were relatable, useful, and helpful. Caregivers generally found the materials of session 8: problem solving, and self-care to be the most relatable (M=4.09, SD=.82) and useful (M=4.13, SD=.80).