We organize findings around three themes: I) The most commonly described interventions, II) different types of challenges to and within participation; and III) what successful participation can look like according to service providers.
I) Commonly described interventions
In this section, we find the most commonly described social interventions with youth and families. As mentioned above, participants spoke predominantly of the difficulties engaging youth and families in services. We describe 1) the various actors discussed by participants and their perceived roles and 2) their location and movements between locations.
1) Actors and their perceived roles
Five core groups of actors emerged as essential partners with different roles and responsibilities for effectively providing services to youth and their families: a) service providers; b) youth; c) parents; d) extended families; e) the community.
Service providers. Service providers are described as having to share information with other professionals. They are seen as having to communicate with parents in order to obtain consent to offer services to youth who are under the age of 14. Service providers feel that they often take the first steps in initiating contact and follow-up.
Youth. Service providers do not describe youth as having a particular role or responsibility. Youth are often described for their willingness to receive services, their behaviours, symptoms and family contexts. They are rarely mentioned by service providers, despite the fact that interviews are specifically on child and youth mental health and wellbeing.
Parents. Service providers describe parental involvement as essential in the service delivery process. A mental health nurse explains:
“Ideally with children and teens you want to work with their families, with the school, and obviously the youth. It’s really difficult when you don’t have the support of the family. If we do not have the support of the family, we will not be able to solve the mental health problem.”
Parents are sometimes described as potential coordinators of services. A doctor explains that parents can have a beneficial impact on the continuity and coherence of services as they can relay information from one service to another:
“What goes best in paediatrics is when the parents are able to take on the role of kind of coordinating the care, it's really when it goes well. Yeah, for coordinating and also for speaking for the child. Like, “You sent me for that specialist but that wasn't the one I needed. What I needed was this”. So when there's that kind of empowerment and ability, then those really go best”.
Service providers also described how parents can support professionals in finding solutions for youth:
“The parents came in for a meeting and we discussed the plan with the parents and [they] gave us their feedback about how it (the plan) would affect their children and some ideas were put forward”.
Extended family: Service providers described the role of extended family members as support systems for parents when they are not physically or emotionally available. In fact, extended family is considered the first placement option when children must be removed from the immediate family environment. A Crown attorney emphasized how extended family can also be a source of information for service providers:
“Family members will get involved most of the time, to help to find a solution for the child to be protected. Maybe they’ll take the child home and then this way the parents will maybe get a break for a while because sometimes it's difficult for them. So yes, family members will help, and will also help me understand the situation a little bit better by giving me input, information.”
Community Finally, service providers often described “community” as a necessary and needed collaborator for effective care and more specifically for prevention. Service providers spoke of their desire to have community members guide their work and “mobilize” around health and social issues. This broad system is seen as a possible locus for change however it is unclear who is seen as a `target participant`. One teacher spoke about the supporting role that community must play for a young girl with behavioural issues:
“She needs hope. How do we give hope? It's a community thing so we just need the people now to be better role models. We need to do our best and hope that she does her best, and that the community speaks to her and we need to hope that everyone will do their best (to help).”
These five groups of actors are reported as having distinct yet highly connected roles and responsibilities: In order for the service provider to work with the youth they must interact with parents; for parents to be supportive towards their children and youth service providers feel that they need support from extended friends and family, who is turn require the support of community. However, services providers rarely describe interactions with extended family or with community representatives or organisations.
2) Locations and movements
The physical locations of services and of those seeking services played an important role in service provider narratives about the role of participation in care. Children and youth often met with service providers inside organisations such as youth protection offices, nursing stations, and schools. Parents were at times described as partners within the services, although mostly described as being difficult to reach and outside of services. They were described as being in their homes, in their community, and the Coop or Northern (grocery store chain).
Participants used a variety of action verbs including go to, come to, send, and call that imply the need for movement when speaking of their attempts to collaborate with families and communities. These movements seem to take place each time an actor goes towards another actor, or every time an actor poses a gesture meant to invite (hospitably or forcefully) another actor towards them. These movements occur within the different health and social services (between professionals), from the community to services (youth and parents seeking services), from services to the community (service providers attempting to meet with families and community members) and within communities (between families and community members).
Service providers generally described their movements and actions towards families and youth as attempts to invite youth and parents to come see them, or asking parents for consent to work with the youth. They describe using email, letters, and phone calls, or at times going directly to their homes. However, they also spoke of feeling uneasy going to peoples’ home, especially if they know that the family has difficult psychosocial dynamics. At times they will ask a colleague from another service to accompany them. They describe the movements and actions from services towards community to sometimes include individual consultations with particular members of the community, such as the mayor or an elder.
Regarding youth and families, very rarely do service providers speak of active steps taken by youth towards services. Instead, youth were described as being “picked up” by service providers
“But of their own will? Would youth come consult themselves? Teens? Because they aren’t doing well? No! What happens most of the time is that a youth will attempt suicide in the middle of the night and be admitted to the nursing station. We have youth attempting suicide every week, mostly teens. Sometimes serious, sometimes less… well less intention of dying. But we bring them to the hospital. We keep them over for the night. The next day we talk to them. We meet a social worker and all that. And often we start a follow-up, either medical or with DYP. But it wasn’t intentional, or it wasn’t youth who were brought in by their family. We just picked them up at the hospital in a crisis situation. The fact is that at least three quarters will not continue the follow-up. Its just a quarter that will continue”.
II) Challenges to and within encounters
Service providers’ narratives about patient involvement in care emphasized two broad types of challenges in relation to making connections with youth and families: 1) Challenges that inhibit the use of services by youth and families (as understood by service providers); and 2) Challenges that impact service providers’ ability and desire to go towards youth, families and communities;
1) Inhibitors in the use of services, according to service providers
In this section we identified four broad categories that influence families’ use and perception of services: a) history; b) Service provider’s attitudes; c) fear and stigma; d) limited service mandates.
History. Only a few participants spoke of how colonial histories influence how families might interact with services. These participants described how history could influence community and family wellbeing, families’ feelings towards non-Inuit service providers, and their feelings towards the system. A nurse explained the irony of the situation:
“They lived in igloos and they had their traditional way of life, and then we came in and said we're gonna give you those villages and we're gonna kill your dogs. We're gonna force a different kind of food on you and we're gonna basically manage you the way we want to. Then we're gonna put you in schools, where a lot of you are gonna get it and abused and whatnot. Then suddenly we're in 2014 and we're asking: How come you guys are not taking care of you own life?”
This nurse described a feeling of frustration and disempowerment in the larger social context where Inuit families are asked to trust services and mobilize healthcare plans made within a colonial system. Similarly, a psychiatrist explained:
“Of course, sometimes there are people who are reluctant, and with good reason because colonial history has not been rosy. There are still people with a mentality of domination so it (colonisation) isn’t just a thing of the past, unfortunately. So we can understand (families) mistrust.”
Service provider attitudes. Participants feel that service providers’ attitudes influence whether or not services are deemed acceptable by youth and families. Some participants described negative, and at times hostile, attitudes amongst their colleagues who act in ways that enact or reinforce colonial relations. These discriminatory attitudes can directly influence families’ abilities to trust the services. A family doctor at the hospital described some of the judgemental attitudes that she has observed among her colleagues, which she believes may impact families’ comfort in using services:
“I find there are lots of people who judge quickly (…) Like, my child is half Inuk and she says that when she goes to the hospital, if she is with me, she sees a difference in how she is treated. When she isn’t with me, she says that they don’t always treat her nicely. I feel there can be discrimination.”
Some participants also felt that certain service providers interpret and label behaviours as `cultural ways,` rather than truly attempting to understand the uniqueness of a person, and the complexities and contexts within which behaviours take place. This tendency creates another obstacle to deeper respect and understanding. As an example of this type of attitude, an Inuk youth protection worker described the negativity that she hears from some of her colleagues who might believe that Inuit do not talk very much or share particular aspects of their life for cultural reasons:
“Some workers make conclusions like, “ahhh it's because of their culture, she can't tell me this or she can't talk.”
Families’ Fear of services and of the stigma attached to using services. Some service providers feel that families might see services as a form of punishment rather than as a source of support. They also feel that for some parents, seeking help through services can be stigmatizing within their community. Other parents may fear service providers taking away their children or the police getting involved in their family life. A child psychiatrist gave an example of a family dealing with this fear:
“The mother was very traumatized by the DYP (Departement of Youth Protection), so she will stay away from the `medical` (services) as much as possible; basically all that is `White`. It's a shame because the children… they (families) need help, they have a lot of learning difficulties and then they go to look for help. Sometimes a mother accepts, then she withdraws because she is so afraid (…) she remains scared that her children will all be removed again.”
A social worker described how parents might feel guilty when a service provider or teacher approaches them with a situation concerning their child, which can lead to distancing themselves from the service providers:
“Well, if there is any [problem], there is tension with the family. If your child is not doing well at school, the parent feels guilty about everything, and then they close-down”.
A crisis center coordinator felt that families might fear being judged by other community members by accessing particular services, for example, related to mental health:
“I think a lot of the families have a hard time when it's mental illness and with the medication. A lot of family members won't want them taking the medication 'cause they don't want to say they have a mental health problem. There is sometimes stigma associated with our clients, which is too bad, with people in the community as well.”
Service mandates. Several service providers also described how different understandings of the role and mandate of the services could impact how patients access and use services. A mental health nurse shared how he responded to a situation when a youth misunderstood the role of his youth protection worker:
“Often they don’t understand. Like for example, I was following a youth under DYP. The youth verbalised that he hated his DYP worker but he didn’t understand her role at all, what she was doing for him. Sometimes I spent time with him, telling him: Listen she wants what is best for you, she is there to ensure this, that and that. She wants to help you go back to school.”
2) Factors that influence service providers’ ability and desire to go towards youth, families and communities
The following is organized around five themes: a) Parental consent; b) lack of resources within the community; c) language; d) culture; e) mismatched timing.
Parental consent. Participants spoke of legal challenges to truly engaging youth and families in service provision. Parental consent is legally required for youth under 14 years old. Consent is also required to share information with other service providers. Service providers described a dynamic between themselves and families where they feel dependent on parents until they either receive consent or instead chose to use the institutional power of youth protection services to oblige service provision. A social worker from the nursing station who also worked at a local school described the challenges to obtaining parental consent:
“I always try to get consent from parents, especially when the youth is under 14 and well, sometimes they refuse. You cut the grass under my feet, I can’t do anything. Sometimes I work in collaboration with DYP and then they might be able to get a consent from parents after trying very hard. I have to send a paper, they have to sign it, and then I never see the parents. They sign, I have the paper, we invite parents to come meet, again with pressure from the youth protection and often the parents won’t show up.”
The required consents are necessary in order to ensure parents are decision-makers in a process of care for their children however they seem to construct and formalize particular types of relationships between the service providers and the families.
Lack of resources. Service providers perceived a lack of resources as a challenge to setting up alternative services that would better respond to people’s needs, for example related to emergency housing, in-community alcohol and drug rehabilitation services, psychotherapy, and financial assistance. One youth protection worker, a specialist in clinical activities, explained how the lack of resources for children who are signalled under youth protection directly impacts the chain and quality of services that health workers can provide for youth:
“There is a lot of placement and there are very specific protocols and frameworks on when to put a child in and what to try, how to do it, and how to prioritize and what to do with it… The law can be rigid. But here, unfortunately, we do not have foster families. So we end up placing [youth] in places that are not necessarily better, or place with Whites who will eventually go one day. And I do not judge, but that's it anyway. So we take children, we take them away [from their families] and they lose all contact because the Whites who speak Inuktitut are not many.”
Service providers like this youth protection worker described feeling frustrated and discouraged that they do not have more adequate resources to develop/implement comprehensive solutions/plans that better meet the needs of the youth and family they work with.
Language. Participants identified language as a major impediment to developing positive interactions with families. Communication challenges seem to create frustrations for both service providers and family members who feel that their exchanges are limited when they would like to go further. One psychoeducator explained:
“One of the problems I have, it's Inuktitut. I do not speak Inuktitut, because the problem I have is when you have young people, when you get into the emotions, it's all in Inuktitut. They spit it to you and you would have liked to understand what is said. There are young people who know I do not speak Inuktitut, but sometimes I get a sentence in Inuktitut and they are discouraged that they do not know how to say it in French or in English.”
Service providers rarely speak Inuktitut. At times they will have learned a few basic words. Moreover, for many service providers English is a second language. In these cases both the family and the worker are exchanging in a second language. This is challenging in any situation, but particularly tedious when speaking about emotions and relationships.
Culture. Some participants spoke of the ambivalence and complexities related to learning about and from Inuit culture. On one hand, some participants remarked that making such efforts may be perceived as a form of respect. On the other hands, participants suggested that these efforts can also be perceived as “wanting to be Inuit.” Participants described how community members can limit non-Inuit access to cultural activities, and general interactions with these individuals if they are perceived as not being authentic in their attempts to learn, or if they are view as attempting to appropriate traditional activities. A nurse explained:
“There are some (non-Inuit) who will be able to speak Inuktitut (…) They always come up with Inuktitut sentences in the meetings. Then Inuit will tell me: damn they annoy us (...). But it was only after a few years that I started hearing that. In the beginning you think `I have to become like that, I have to`. But now, collaboration for me ... It's about being yourself.”
Cultural challenges also emerge when people have different and often incompatible expectations. One social worker offered examples like school teachers expecting youth to attend classes every day and all day and social workers hoping youth attend prevention sessions on a regular basis, whereas families might feel that activities such as hunting, camping or staying at home are most helpful for the youth.
Mismatched timing. From the perspective of service providers, families use services at times and in ways that are inconsistent with the way services are delivered. Indeed, service providers report that families often ask for help when they are in a precarious situation. However, because of the lack of resources, families often only receive help when the situation becomes critical. A planning officer at the Youth Family Service described the situation of a family who had been asking youth protection services for help because they felt that their teenager was displaying problematic behaviors including drug use and sexualized behaviors. In a moment of crisis, one family member hit the teenager. Youth protection services then got involved and placed the children in foster care. In another example provided by an intervention worker, a parent called the police to ask for help to deal with their teenager who was heavily intoxicated. Yet the police did not see themselves as having a mandate or a role in this situation. In these two examples, families reached out for help but could not access these services at the moments they were needed the most.
Furthermore, many service providers described their impression that in times of crisis, families expected services to take charge of a situation and of their children, relegating their parental responsibilities entirely. A psychiatrist described how youth can end up hospitalised alone in Montreal:
“Sometimes, youth that are hospitalised, their parents don’t come to see them. We have to run after the parents. The social services try to reach the parents. The youth is a minor and doesn’t have family around. We have extended family who might be there a bit and that is really helpful. Or else, they end up alone.”
In a contrasting example, one social worker explained how families might show up in times of crisis:
“People call when they are having a big issue, big distress, cries, they are really upset. They aren’t able to keep their child, not able to keep their elderly parent, or not able to deal with alcohol problems of a family member. It’s pretty much what we deal with. Yes, we offer support, but it stops there. Because if people don’t take things into their own hands, well the problem just starts all over again. Me, I try to show the cycle of dependence. I try to show ways out, ways of affirming oneself, how to face our own problems.”
Family members may seek services on different occasions or may stay at home feeling that the resources are not helpful. If the situation spirals into a crisis, families may either feel the need to go back for support or end up forcefully receiving court-ordered services. This spiral has multiple repercussions. In the moment when services are offered or available, the family may have already fallen into feelings of hopelessness and disengagement towards the situation.
Service providers spoke of feeling frustrated when situations ended in crisis when they thought that the crisis could have been prevented. This frustration was at times articulated by a general belief that families and communities, or even Inuit in general, are not `prevention oriented` as can be observed in the following quotation.
“In general, health services are very well received by the population. Typically, the Inuit population is a population that lives from day to day. So when we talk about curative health care, yes they are engaged, they come to seek this care. Less when we talk about prevention, it is not necessarily a population that will be compliant with prevention programs or come for their medical appointments. If it is beautiful that day, they will go fishing and then hunt. They will not come to their appointments. Then I say that we are not adapted to this reality.”
These generalisations and frustrations may be felt and heard by other service providers as well as by the families, who may feel judged or misunderstood. One elder explained the challenges of having a genuine community voice within services:
“Even if we meet and talk and say what we need as a people, there are too many other things that influence decision-making, things we cannot see. So in the end we don’t feel heard, we don’t feel understood. What is the point?”
With these mismatched timings between the services that are offered (at the breaking point) and the services that are needed (before breaking point) seems to impact both service providers’ and families’ perceptions of one another, limiting their ability to truly collaborate towards a common goal.
III) Building on strengths
Despite the multiple challenges above, few service providers also described successful encounters with youth and families as well as specific ingredients or approaches that they felt would lead to more positive and meaningful participation of youth, families and communities. We organized the results around 5 categories: a) developing trusting relationships; b) informal encounters; c) reaching out to extended family and community; d) responding to the right needs; e) attitude and care from service providers. These findings allow us to reflect on ways of learning from positive experiences and building on existing strengths.
Developing trusting relationships. Participants spoke of service providers who have lived in a community for many years and who have established a trusting relationship with families. They felt that when this was the case, families would mobilize in their care and proactively seek help. A child psychiatrist described how her ongoing relationship with and commitment to the community helps build trust and collaboration:
“I've been there for a few years. [Families are] starting to recognize me, they greet me. Then they'll come to the airport and then they'll tell me "you know my daughter, such, such thing". It is in the long term that the relationship is established and then the collaboration is done”.
After having received training from an Indigenous organisation, a nurse reflected on what she learned through the training:
“Often when Inuit go towards services, it’s because they are in crisis and they just don’t have any other choice. But, would they really just go when they are in crisis if they felt that they had strong trusting relationships and if services were adapted? I don’t think so because I know people who have good relationships with workers and they don’t just go when they are in crisis.”
When a relationship has been difficult to establish with a patient or family, some service providers spoke of building on another service provider's trusting relationship by asking the colleague to speak with the family for them or to accompany them in their meeting with the family. This approach was particularly relevant with Inuit colleagues. In the next citation, an Inuk youth protection worker describes how she has collaborated with her non-Inuit colleagues:
“Literally for every intervention. I heard so many [of my colleagues], like “it's impossible to get to this mother, it's impossible to go to this house” ‘cause they are alone, you know? Like, we discussed before, you should have an Inuk with you every time you go to someone's house. So I follow to people's houses just to go translate and it usually works.”
Another Inuit psychosocial worker described playing a similar role:
“When I was in charge of this service, we had caseloads and we had waiting lists and everything. But we could work much faster and quicker with Inuit families because we're Inuit. I had an assistant who was also Inuit, and elderly experienced people working with us as community workers and going to visit families and knocking on doors and working with the police. So it was much more community-oriented.”
Informal encounters Informal approaches such as “having an open door to just come and meet” were also helpful for facilitating encounters and the participation of families in their care. A social worker described what this open door could potentially look like:
`there’s got to be an open door. You know, I was even discussing with a couple of the local staff in the school - how cool would it be if once a month, we just had like an open-door night for a few hours? Like, not parent-teacher night, not talking about report cards… we are not discussing the academics. Just come and meet the teacher. Come have a coffee, relax, you know? It doesn’t have to be fancy, it doesn’t have to be organised. The idea that the teacher is not this scary entity that sits in a classroom, right? That we are human beings and we’re just here to help your kids.”
One teacher explained that he tends to spend a lot of time within the community, at events and just walking around chatting with people:
“I guess it's also about being in the community a fair amount, so I am very close with a lot of parents. Like, I know them on a social basis. And I'll talk to them about their kids at those points, too. I think it helps sometimes.”
Having the community offer support, education, and spaces to go in the community are seen as very important. An Inuk complaints commissioner gave the example of a community kitchen:
“There is a community kitchen that happens every Monday, Wednesday, Friday. Three times a week, going on here at school for the whole family. Sometimes I bring my children and then you can bring your children; they have animators for the children. I think little things like that can help relationships between parents and young people.”
Reaching out to extended family and community. Working with extended family members such as grandparents, aunts and uncles, and cousins as well as key members of the community can also help service providers connect with the family and youth. One general practitioner explained:
“[The] times I've seen beautiful interventions were often [with] the grandparents who know the children well, and the grandparents really have a respect here from young offenders. I think it's often them who have a lever to try to reason youth and talk to them about more emotional things.”
A psychiatrist explained the particular involvement of extended family in Nunavik:
“I find that compared to the south, the extended families really get very involved with patients (…) Aunts, cousins, there is really this sense of family that goes beyond the nuclear family. And generally it goes pretty well with them when they see that we are interested in them, that their opinions count, that we are soliciting them for that, when we thank them for their support for example. They are often really pleased. They have a collaborative mindset”.
A few participants spoke of these types of consultations, yet admitted only seeking this wider community engagement once or twice during their time in the north. More frequently, service providers encouraged patients to consult extended family as well as members of the clery.
“When I started working in my two regular villages, I went to see the Mayor of each community to ask what he saw, as a leader, what were the main problems. And what he thought could be done to adapt service more to their culture. I did it at the very beginning of my practice. I was well received each time. The Mayors were very grateful. But after that, I never did it again”.
On a more individual basis, a program manager, a planning officer and a school director described trying to “go towards community” as a way of learning from community and integrating the environment they live and work in. They spoke of attempting to learn Inuktitut or trying traditional activities, going on the land, participating in community activities, and integrating themselves into the community.
Responding to (the right) needs. Many participants articulated the importance of responding to families’ needs as they were understood and communicated by families, and not only as they were understood by service providers. This can mean diverging from service mandates. One teacher provided examples of ways in which he has adapted his work approach and how he thought others could do the same:
“I have been trying to volunteer like a workshop, like to train parents by doing home visits, just teach them the basic needs and what they need at home. It's a lot of fun because it's a lot of interactions and some parents they don't know what to do so it would be fun to have home visits. Talk about what kind of support they need; the resource team is there to help them. They could help them to get jobs, not there to force them but to help them. Maybe tell them what kind of job is open in the community and the father, for sure he needs support to, non judgmental cause he is affecting the whole family.”
Attitude and care. Finally, participants spoke of how attitudes of respect and care for families can allow for positive interventions built on trust. A doctor explained the importance of recognizing the role that families play in patient care:
“To feel that [service providers are] interested in what [families] have to say, that their opinion counts, that they have been asked for that, that they are thanked for the support they give for the patient, for example. They are often very happy with that”.
In the quotation below, a psychosocial worker recounted the story of a foster family and youth protection agent who respected the importance of the mother in the child’s life, despite her challenges:
“The baby is placed in foster care in the South, but this foster family is so available and open. They text [the mother] and they talk to each other every day [on] Facebook, so that the mother can keep a link with [her] baby, [her] daughter who is 2 years old. But this foster family there, so available. Then the social worker who works with her, she is very aware about the reality of First Nations, the importance of maintaining links, culture. That, for me anyway, I think it's a beautiful success story”.
We have organized our description of results around the more commonly described interactions (section 1), the challenges that explain these interactions, and the more positive interactions that we can build on (section 3).
The first figure illustrates the interventions that are more common. Service providers might speak to each actor but rarely together and services providers and family members occupy distinct spaces within the community making it difficult to meet. The second figure illustrates successful and desired intervention that are collaborative and place the youth and the family at the center. `Collaborative` is understood as many people sharing the work and decision-making related to a patient or a family in a way that recognizes and respects the strengths and the knowledge of all those involved. The patient, the youth the family are all seen as equal partners in the decision-making for their health and wellbeing. As the interviews show, there are many challenges to putting this vision into practice. As we have seen, the challenges are numerous: capacity to acquire parental consent, human and material resources, mandate of the service providers (ex: prevention vs crisis intervention vs postvention), history of coloniality, fear and stigmas, having a trustful relationship with the community, etc.