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We sought to engage parents and caregivers in research to understand their health literacy needs related to the use of second-generation antipsychotic medications (SGAs) in children and youth.
Two focus groups with a total of 14 participants were conducted in two distinct geographical regions of British Columbia.
Participants expressed that they had numerous questions about the medications but had few reliable resources available to them. They currently obtain information from a wide variety of sources including: psychiatrists, pharmacy print-outs, pediatricians, other parents, the Internet, and books. They expressed a preference for information to be initially delivered verbally, on a ‘one-to-one’ basis by their medical professional (preferably psychiatrist, psychologist, pediatrician), and then supplemented by accessible, written- and video-reference materials that would also be available online from a single reputable source (e.g., BC Children’s Hospital). The weight gain and other potential metabolic side effects were of great concern to parents. Educational resources that address healthy nutrition and promotion of physical activity need to address the specific issues that parents looking after children with mental health concerns face.
Families are key partners in the management and treatment of child and adolescent psychiatric disorders. The findings from this study support the value of including the “family” voice in developing educational strategies related to medications such as SGAs.
Faire participer les parents et le personnel soignant à la recherche sur les connaissances qu’ils doivent avoir sur les antipsychotiques de deuxième génération administrés aux enfants et aux adolescents.
Quatorze participants ont été répartis en deux groupes dans deux régions distinctes de Colombie-Britannique.
Les participants avaient de nombreuses questions à poser sur les médicaments, mais peu de ressources fiables à leur disposition. Ils s’informaient généralement auprès de diverses sources (psychiatre, pédiatre, autres parents, fiche pharmaceutique, Internet et livres). Ils préféraient les informations données oralement et individuellement par le professionnel de la santé (psychiatre, psychologue ou pédiatre). Ils complétaient leurs connaissances en consultant des documents ou en visionnant les vidéos mis en ligne par des sources fiables (British-Columbia Children’s Hospital par exemple). Les parents étaient extrêmement préoccupés par la prise de poids de leurs enfantset les autres effets secondaires possibles sur le métabolisme de ceux-ci. Les informations sur la diététique et l’activité physique fournies à titre éducatif doivent répondre aux questions spécifiques que se posent les parents.
Les familles sont des partenaires essentiels dans la gestion et le traitement des troubles psychiatriques des enfants et des adolescents. Les conclusions de cette étude appuient la thèse selon laquelle la famille doit avoir son mot à dire dans l’éducation sur les antipsychotiques de deuxième génération.
Family involvement is integral in the treatment of child and adolescent psychiatric disorders. A diagnosis of a psychiatric disorder catapults families into an unfamiliar world where they must cope with a range of medical, home, and school issues. Family education and support are essential components in the successful treatment of child and adolescent psychiatric disorders. When medications are used as part of the treatment plan, parents and caregivers are the ones responsible for administering and monitoring medications at home on a day-to-day basis. They can also provide valuable observations of symptoms and treatment efficacy (Osher, Osher, & Blau, 2008).
Valuing the wisdom in the day-to-day experiences of families and viewing them as partners in children’s mental health are hallmarks of family-inclusive, responsive approaches to mental health care. Collaborating with families is regarded as a best practice and results in better outcomes for children and youth with psychiatric disorders (DeChillo, Koren, & Shultze, 1994; Morrissey, Kane, & Prinz, 1999; Osher, van Kammen, & Zaro, 2001; Vander Stoep, Williams, Jones, Green, & Trupin, 1999; Friesen & Stephens, 1998).
The use of SGAs for the treatment of psychotic disorders (Armenteros & David, 2006) and other psychiatric conditions (Findling, Steiner, & Weller, 2005; Olfson, Blanco, Liu, Moreno, & Laje, 2006) in children and adolescents has become a widely accepted practice. In a survey of Canadian child psychiatrists (Doey, Handelman, Seabrook, & Steele, 2007), 94% of respondents reported prescribing SGAs, but there was wide variation in the type and frequency of monitoring. There is increasing evidence linking SGA-treatment with weight gain and other metabolic side-effects such as diabetes and dyslipidemia (Panagiotopoulos, Ronsley, & Davidson, 2009; Correll, Manu, Olshandskiy, Napolitano, Kane, & Malhotra, 2009; Shin, Bregman, Frazier, & Noyes, 2008; Correll, 2008; Correll, 2007; Newcomer, 2005; Cheng-Shannon, McGough, Pataki, & McCracken, 2004). Thus, children and adolescents who are prescribed SGAs require careful monitoring (Panagiotopoulos et al., 2009) combined with anticipatory guidance regarding healthy eating and physical activity. Parents play a key role in managing their child’s medication use (Brinkman et al., 2009). Therefore, working in partnership with families helps to ensure that the child receives the most benefit from the medication while minimizing the potential risks. This partnership requires that families are knowledgeable in medication management at home and empowered to promote healthy active living within their entire family.
In this article, we report on an exploratory qualitative study which is part of a larger health literacy initiative targeted at both families and health care professionals to develop educational resources and programs to improve awareness of the metabolic effects of SGAs and to promote healthy active living. This health literacy initiative is a collaborative partnership between clinician researchers at BC Children’s Hospital and the F.O.R.C.E. (Families Organized for Recognition and Care Equality) Society for Kids Mental Health. The F.O.R.C.E. Society is a family-based organization that provides education, support and advocacy for families dealing with child and youth mental health disorders.
Engaging parents as partners in research is a fundamental way to utilize the expertise of the family in determining services needed and outcomes that are meaningful to families. This partnership recognizes the different expertise that researchers and families bring to the table. Working collaboratively helps to ensure that educational resources will meet the needs of families and result in improved outcomes.
Focus groups offer a useful vehicle for involving users in care management and strategy development, needs assessment, participatory planning and evaluation of health promotion and nutrition intervention programs (Gregory, 1991; Duke, Gordon-Sosby, Reynolds, & Gram, 1994; Kitzinger, 1995; Higingbottom, 1998; Richardson & Rabiee, 2001; Van Dillen, Hiddink, Koelen, de Fraaf, & van Woerkum, 2003; Nichol, Retallack, & Panagiotopoulos, 2008). More specifically, within the realm of child and adolescent mental health, focus groups have been used to explore parents’ decision to use stimulant medication for treating their child’s ADHD disorder (Charach, Skyba, Cook, & Antle, 2006). The opportunity to be involved, to be valued as experts, and to be given the chance to work collaboratively with researchers can be empowering for many participants (Goss & Leinbach, 1996). Partnering with families enables researchers to gain a new perspective on their field of interest – that of the lived experience.
The project was reviewed and approved by both the Children’s and Women’s Research Review Committee and the University of British Columbia Behavioural Research Ethics Board. Informed written consent was obtained from all study participants.
An invitation to participate in a focus group on SGA use in children and adolescents was sent out through the F.O.R.C.E. Society network in two geographically distinct communities within British Columbia. The focus groups were held in a community center within the respective communities and were two hours in length. Transportation and childcare costs were reimbursed for parents if needed.
Each focus group consisted of 7 participants. All but one of the participants were mothers of children and adolescents who had been diagnosed with various psychiatric disorders including ADHD, depression, and psychosis. One participant was a caregiver for her nephew. Although it was beyond the scope of this project to collect socio-demographic data on the families, a number of mothers indicated that their child or youth had been diagnosed with more than one disorder. Most of the families indicated that they were currently using an SGA as part of their child’s treatment plan. A few families had children or adolescents who were no longer on an SGA. Some mothers also indicated they were single parents and had limited finances.
Both focus groups were facilitated by the same individual [NC]. A research assistant from BC Children’s Hospital and two F.O.R.C.E. Society support staff parents (one for each focus group) took notes during the sessions, and the sessions were also tape-recorded. The session began with an explanation of the purpose of the focus group and the link with the broader study on SGAs and the promotion of metabolic monitoring and healthy active living through the creation of educational resources. The participants were encouraged to ask questions at any point in the session. The discussion questions focused on two general areas: (1) Families’ information needs with respect to SGA use with their child, and (2) Promotion of healthy eating and physical activity (barriers and facilitators).
A professional medical transcriptionist transcribed the tapes. The transcripts along with the notes taken by the research assistant and support staff formed the basis for the results.
The transcripts were reviewed in detail by the focus group facilitator [NC] who extracted re-occurring themes for each of the topics. The transcripts were reviewed until no further themes could be derived. The themes were then sent back to all of the participants who were asked to review the document for accuracy and completeness. None of the participants requested any additional changes. The principal themes that emerged from the groups are presented below.
The results are organized into five tables: (1) Families’ experience in accessing information about medications; (2) Recommendations for provision of information about medications; (3) Healthy Eating: Barriers and Strategies; (4) Physical Activity: Barriers and Strategies; and (5) Recommendations on Resources for Healthy Active Living. The topics and themes that arose from the discussions are presented with examples using quotes from the participants. The parents/caregiver who attended the focus groups reported they were the ones who took on the responsibility for learning about medications. They were very pleased to participate in the research as they viewed medication management as a crucial and important component of their child’s overall care.
The participants received information about their child’s medication from a variety of sources including: doctors, the hospital, pharmacists, family, friends, the library, mental health organizations and agencies, schools, and the Internet. Most of the participants looked to more than one source for their information.
When asked about current resources available to families, one participant commented on how each family seemed to get different bits of information. The parents/caregiver expressed concern about the quality and accuracy of information, particularly on sites that provided information on alternative therapies. Quality of information and credibility of the source were identified as important issues, and the participants tried to access information from trusted sources such as hospital websites. Table 1 summarizes the themes and examples of quotes that arose out of the discussion related to families’ experience in accessing information about medications.
The prescribing physician was seen as the one who should be (at least initially) providing information about medication to families. The participants felt it was important to have both face-to-face dialogue and printed/electronic resources that families could take home. Videos or DVDs that doctors could hand out to families to take home would also be helpful.
A number of the participants indicated that they would like to have access to a provincially based website from a reputable organization such as a hospital for information about SGA treatment in children. The following were suggestions for helpful resources to be included on the website:
Participants wanted information presented in a way that was easy to understand, as currently available information on the Internet was not always comprehensible to them (ie. academic articles with medical terminology). One participant described how her doctor explained the difference between first generation antipsychotics and SGAs:
Dr. __ explained it to me. It’s an older antipsychotic so it’s kind of like using a shotgun as opposed to using a bullet. The bullet is the risperidone. It hits particular receptors and works really well, because of that way. This one is a shotgun thing and it does a little bit of everything, but no problems with the … gland and thus with the weight gain.
The participants expressed great concern about the side effects of SGAs with weight gain being the predominant one. They suggested that information about weight gain and the need to monitor a child’s eating should be provided prior to a child starting the medication so that parents can implement a plan from the start.
Participants thought that families should know what to watch out for (e.g., the child seems to eat constantly and doesn’t seem to know when they are full; child craves carbohydrates). They wanted to know why the weight gain occurred and the associated health risks. All were aware of the need for metabolic monitoring (e.g., measuring height, weight, waist circumference, blood pressure, blood work) but noted that it was not occurring for all children or on any regular basis. A number of participants expressed a desire to know more about long-term effects of SGAs on children.
Table 2 summarizes the themes and examples of quotes that arose in the discussion on recommendations for the optimal provision of information about medications.
In the second half of the focus groups, the discussion turned to how families manage healthy eating and physical activity or exercise with their children.
A summary of the themes that emerged relating to barriers to healthy eating and strategies used by families is provided in Table 3. All the participants recognized the need for a healthy diet for their children.
Barriers to healthy eating included the child’s refusal to eat certain foods, negative external influences, limited income (single parent status or need to take time off work), and dealing with carbohydrate/sugar cravings. Within the home, participants noted that controlling how much a child would eat could be challenging, and attempting to restrict foods sometimes led to violent reactions from the child or adolescent.
Strategies to promote healthy eating included providing vegetables at home as a healthy snack and eliminating sweets as much as possible. One parent described how she limited the size of food portions. Another parent described how she dealt with her child’s desire to eat junk food by compromising and having a “treat” night such as going out for pizza.
The themes and examples that arose in discussions about the barriers that parents face and strategies they employ to encourage and support their child to engage in physical activity are presented in Table 4.
The side-effects of the medication created additional challenges to exercising. Weight gain, loss of energy, and sore muscles were cited as specific side-effects that made it more difficult for children to engage in physical activity. One participant noted her child’s phobia made it difficult to get her child to go outside. A number of participants noted that there seemed to be few opportunities for their child to be around other children. Others noted that children with mental health challenges often have difficulty in socializing with other children and were teased by other children.
Parents’ strategies to get their children active included: walking home from school, exercise equipment in the home; paper route; swimming; and encouraging the child to set up their own exercise program. One participant described how modeling by engaging in regular exercise helped encourage her daughter to set up an exercise routine.
Throughout the discussions, the participants offered a number of recommendations with respect to the development of resources on SGAs and healthy living strategies for families who have a child or adolescent with a mental illness. Examples of these strategies are presented in Table 5.
The participants discussed how information provided in resources needed to be relevant and useful to families who face special challenges because of the mental health issue and not just the typical suggestions for healthy eating and exercise. Most of the publicly available guides and resources were seen as not being helpful as what might work for a typical child often did not work for children with mental health concerns.
Participants wanted to have access to a nutritionist/dietician and occupational therapist that were knowledgeable about working with children who had mental health problems. Individualized funding would enable parents to choose what services they needed for their child, and could, in part, support paying for exercise programs. Participants liked the idea of having programs where the children could learn how to select and prepare healthy snacks.
To our knowledge, this study is the first Canadian initiative where parents are participating in the development of resources for children and adolescents related to pediatric mental health. The parents and caregivers were very pleased to participate in this study, as they saw this topic as very important. One participant noted the lack of resources available when she first started to seek information surrounding the relationship between SGAs and weight gain.
It’s nice that they’re finally doing this study, because I remember [name], you know, when we met, when this group first started like two years ago, and you asked me about weight gain in kids and I asked Child & Youth Mental Health and I didn’t get any answers and that was, you know, two years ago.
Families expressed that they had numerous questions about medications but had few reliable resources available to them. They currently obtain information from a wide variety of sources, but are concerned about its accuracy and applicability to children and adolescents. They expressed a preference for information to be initially delivered verbally, on a ‘one-to-one’ basis by their medical professional (preferably psychiatrist, psychologist, pediatrician), and then supplemented by accessible, written- and video-reference materials that would also be available online from a single reputable source (e.g., BC Children’s Hospital). These findings are consistent with a previous study (Jackson, Baird, Davis-Reynolds, Smith, Blackburn, & Allsebrook, 2007) where parents also expressed a preference for verbal, ‘one-to-one’ delivery of information by professionals that was supplemented by reference materials. Families also expressed a need for reputable information that would help them better understand both the benefits and short- and long-term risks associated with SGA use. The weight gain and other potential metabolic side effects were of great concern to parents. Educational resources that address healthy nutrition and promotion of physical activity need to address the specific issues that parents looking after children with mental health concerns face.
These findings, although preliminary, help to shed light on what these two groups of parents in separate communities in British Columbia expressed as important in order to participate effectively in their child’s care. Plans are already underway to further engage families in the creation of educational resources that promote healthy active living for children and adolescents with a psychiatric disorder. This will include capturing strategies and techniques that have worked for families and providing a venue by which families can share their experiences to help others.
Dr. Panagiotopoulos is supported by the Child & Family Research Institute and Canadian Diabetes Association Clinician Scientist Awards. This work was also funded by The Lawson Foundation.