**8. Discussion**

Consistent with previous research, our study found that parents of boys with DMD have many unmet needs, despite living in a country like Canada where health care is publically funded [Abresch et al, 1998; Buchanan et al, 1979; Firth et al, 1983]. Their needs may be unmet due to a lack of awareness or inability of available resources to adequately target their children needs. In this study we did not find a significant difference in the mean number of unmet needs across key stages of the illness, which suggests that families have needs throughout the course of the illness. As well, there was no significant difference in the mean number of needs by disease severity or parental socio-demographic characteristics.

Although the number of needs did not vary, the results of the group interview indicated that types of needs within the categories of information, financial, and psychosocial supports varied according to the stage of the illness and family situation. By using the DMD-FNS during clinic visits, health care professionals may be in a better position to understand each family's unique priority needs and strengths, instead of having to second guess what they might be or be influenced by clinician's personal bias [Gibson, 2001; Kinali et al, 2007]. The revised DMD-FNS that was used in this study incorporates topics specific to the care of individuals with DMD, and therefore may serve as an ideal prompt for parents to discuss these issues during their child's regular clinic visits. For example, it is important to acknowledge the frequent use of complementary or alternative therapies and the resultant financial burden on families of children with severe neurological disorders such as DMD [Soo et al, 2005]. The parents rated each identified need as very important, so the Likert scale did not provide additional information and we recommend it be removed from subsequent needs surveys for this population.

*things together and say, 'okay look, this is where you need to go; this is what you need to do, and these are the people you need to get money from … All those agencies, none of them talked to each other.*" Parents talked about how this forced them into an advocacy role in order to get necessary supports and services. They reported that lack of coordination and the subsequent need for them to act as advocates resulted in much wasted time, time that could be spent

At this point, parents' needs for information and psychosocial supports seemed to decrease. Parents of young adults with DMD described how they had accepted the reality that their child could die soon. Despite the relentless progression of the disease, these parents were able to offer meaningful support, encouragement, and practical advice to younger families, as summed up by one parent: "*I think it really teaches you that … the moment is the most important; this day is wonderful, … you learn a lot from your child actually, because they have this sort of innate* 

Across all the stages parents indicated that they were very interested in participating in research, particularly if it would eventually lead to a cure. Those that had been actively involved in research activities or fundraising indicated that it gave them hope for the future,

Consistent with previous research, our study found that parents of boys with DMD have many unmet needs, despite living in a country like Canada where health care is publically funded [Abresch et al, 1998; Buchanan et al, 1979; Firth et al, 1983]. Their needs may be unmet due to a lack of awareness or inability of available resources to adequately target their children needs. In this study we did not find a significant difference in the mean number of unmet needs across key stages of the illness, which suggests that families have needs throughout the course of the illness. As well, there was no significant difference in the mean number of needs by disease severity or parental socio-demographic

Although the number of needs did not vary, the results of the group interview indicated that types of needs within the categories of information, financial, and psychosocial supports varied according to the stage of the illness and family situation. By using the DMD-FNS during clinic visits, health care professionals may be in a better position to understand each family's unique priority needs and strengths, instead of having to second guess what they might be or be influenced by clinician's personal bias [Gibson, 2001; Kinali et al, 2007]. The revised DMD-FNS that was used in this study incorporates topics specific to the care of individuals with DMD, and therefore may serve as an ideal prompt for parents to discuss these issues during their child's regular clinic visits. For example, it is important to acknowledge the frequent use of complementary or alternative therapies and the resultant financial burden on families of children with severe neurological disorders such as DMD [Soo et al, 2005]. The parents rated each identified need as very important, so the Likert scale did not provide additional information and we recommend it be removed from subsequent

caring for their family.

*strength that is quite remarkable."*

**8. Discussion** 

characteristics.

needs surveys for this population.

**7.2.2.3 Needs at advanced stage of the disease** 

and helped them feel as if they were helping others.

As the families' ability to cope during the course of the illness may be modified by their interaction with HCP, a major implication of our results is that HCP should make it a priority to provide information to families about DMD that is accessible and customized to their situation [Fitzpatrick & Barry, 1986; Steele, 2002]. A second priority pertains to the coordination of community based services to assist families to access financial supports for equipment and housing modifications in a timely fashion. A third priority is the provision of ongoing psychosocial supports, which may include individual counselling or family peer support programs.

A limitation of the DMD-FNS study relates to the small sample size. The mixed methodology compensated for the low numbers by using a group interview to verify and extend the results of the mailed survey. Future studies could recruit a larger sample to further explore differences across stages of the illness and across family demographics. A second limitation was that we relied on parent report and did not directly survey older children and youth for their perceived needs. During the pilot we found that most boys in the initial pilot phase of the study did not have the ability to work independently through a lengthy questionnaire like the DMD Family Needs Survey. However, previous research indicates that the needs of adolescents may vary significantly from their parents, and it is important to give the youth a voice [Mah et al, 2006]. Future studies could use an abbreviated DMD youth survey to clarify the changing needs of adolescents and young adults with DMD over time. Lastly, our survey was limited to families of boys who were currently living with DMD and may not provide a complete picture of family needs at the final stage of the illness. It may be helpful to interview families after their child has passed away.

Parents who participated in the group interview reflected that they appreciated the opportunity to share and to meet each other and were glad to participate in a research project. They indicated that participation in research projects gave them hope for the future. Based on this experience we recommend that parents of boys with DMD be included in future research initiatives as they have an important perspective and stake in the outcomes of such research.
