**9. Implications for clinical practice**

Individuals with DMD and their families have to adjust to many challenges because of the progressive nature of the disease. The family resilience framework developed by Dr. Froma Walsh, Co-Founder and Co-Director of the Chicago Center of Family Health, can be applied to the neuromuscular population to serve as a guide to target and strengthen key processes that will encourage optimal adaptation of children and adolescents with DMD [Walsh, 2003]. Resilience involves a dynamic process that enables individuals "to withstand and rebound from disruptive life challenges, becoming strengthened, and more resourceful" [Rolland & Walsh, 2006]. Resilience is not innate or restricted to certain people only, and it can be learned over time. A resilience framework for supporting boys with DMD targets on strengths rather than problems, partnership instead of paternalism, and families (rather than the clinicians) as the center of attention. It acknowledges the family as the unit of operation, with tremendous potentials for growth and transformation. Each family in turn has unique perspectives, resources, strengths, and challenges.

Psychosocial Support Needs of Families of Boys with Duchenne Muscular Dystrophy 99

and their families. The modified Family Needs Survey for DMD is a useful tool for needs assessment, continuing dialogue with families, and tailoring services to address individual families' needs. It may be used as part of a family-centered approach to the care of boys with DMD, in order to promote family resilience and their increase their capacity to deal with the

The authors would like to thank the families who participated in the research studies, the contribution of Dr. Melanie Moore, other collaborators, research assistants, and the paediatric neuromuscular clinic staff in Calgary and Toronto for their on-going support. Funding was provided in part by the Alberta Center for Child, Family, and Community Research, the Stichting Porticus Foundation, the Cooperative International Neuromuscular Research Group, and the Alberta Children's Hospital Foundation. The Duchenne muscular

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Bach, J. R., & Martinez, D. (2011). Duchenne muscular dystrophy: Continuous noninvasive ventilatory support prolongs survival. *Respiratory Care*, *56*(6), 744-50. Bailey, D. B., Hebbeler, K., Scarborough, A., Spiker, D., & Mallik, S. (2004). First experiences with early intervention: A national perspective. *Pediatrics*, *113*(4), 887-96. Bailey, D B., & Simeonsson, R. J. (1988). Assessing needs of families with handicapped

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challenges related to this devastating disease.

**11. Acknowledgements** 

**12. References** 

According to Walsh, the key processes in family resilience focus on: 1) beliefs system, including making meaning of adversity, contextualizing distress, having a positive outlook, and developing transcendence and spirituality; 2) organization pattern (in partnership with community agencies, schools, healthcare, workplace and other larger systems) that provides flexibility, connectedness, social and economic resources; 3) communication strategy, with emphasis on clarity, open emotional expression, and collaborative problem-solving. Relational attributes of this framework include peers, extended family members, and other mentors. The goal of the resilience framework is to promote strong and enduring relationships, to help shape and sustain them to meet life challenges.

In practice, integration of the beliefs system should include: a) assessing family network and their prior experience; b) providing peers and extended family support; c) establishing routines for young children and their siblings; and d) offering genetic counselling to alleviate parental guilt. Positive outlook can be fostered by a) presenting research and current available supporting treatment as opportunities for hope; b) affirming the child's potentials and encouraging the family to look forward to college and beyond; and c) celebrating successes, initiatives, and perseverance, using life examples such as Jesse's Journey and other parent support organizations. In regards to transcendence and spirituality, it is helpful for family to: a) see the bigger picture and purpose, as one family said that they were "chosen to live a better life"; b) embrace spiritual domain of being human, which includes suffering and injustice; c) learn to living with paradox, to make the best out of the worst of times; and d) offer spiritual and inspirational support as necessary.

Using Walsh's conceptual approach, clinicians may be in a better position to help adolescents and their families to gain insight about their illness experience, to appreciate the strengths and vulnerabilities of each family member and the emerging adolescent developmental needs, and to recognize key family beliefs that explain their illness narratives and relationships with healthcare professionals. Clinicians can also foster the development of resilience through their direct interactions with DMD patients and their families. The discussion regarding the diagnosis and management of DMD should take place with both the child/adolescent and parents present, and they should be encouraged to participate in all treatment decisions. The treating physician should provide written information about the illness and realistic expectations regarding potential benefits of potentially new diseasemodifying therapies. Financial resources including funding for adaptive equipments should be offered regardless of parental employment status or family income.

Parents should encourage their teenagers to meet age-appropriate developmental goals, including gradual transfer of decision-making authority over time. A resilience-oriented approach also draws upon extended family and peer resources as potential mentors and positive role models in mediating adolescent adjustment to DMD. Clinicians can help families resolve conflicts, identify coping strategies, develop realistic goals, and seek help when needed. Periodic family meetings and multidisciplinary consultations for anticipated transitions, including going away for college and/or transfer to adult services, can facilitate proactive planning and alleviate unnecessary anxiety.

### **10. Conclusion**

DMD is a challenging chronic disease that requires multidisciplinary collaboration of healthcare professionals and individualized treatment approach for the adolescent patients and their families. The modified Family Needs Survey for DMD is a useful tool for needs assessment, continuing dialogue with families, and tailoring services to address individual families' needs. It may be used as part of a family-centered approach to the care of boys with DMD, in order to promote family resilience and their increase their capacity to deal with the challenges related to this devastating disease.

#### **11. Acknowledgements**

98 Neuromuscular Disorders

According to Walsh, the key processes in family resilience focus on: 1) beliefs system, including making meaning of adversity, contextualizing distress, having a positive outlook, and developing transcendence and spirituality; 2) organization pattern (in partnership with community agencies, schools, healthcare, workplace and other larger systems) that provides flexibility, connectedness, social and economic resources; 3) communication strategy, with emphasis on clarity, open emotional expression, and collaborative problem-solving. Relational attributes of this framework include peers, extended family members, and other mentors. The goal of the resilience framework is to promote strong and enduring

In practice, integration of the beliefs system should include: a) assessing family network and their prior experience; b) providing peers and extended family support; c) establishing routines for young children and their siblings; and d) offering genetic counselling to alleviate parental guilt. Positive outlook can be fostered by a) presenting research and current available supporting treatment as opportunities for hope; b) affirming the child's potentials and encouraging the family to look forward to college and beyond; and c) celebrating successes, initiatives, and perseverance, using life examples such as Jesse's Journey and other parent support organizations. In regards to transcendence and spirituality, it is helpful for family to: a) see the bigger picture and purpose, as one family said that they were "chosen to live a better life"; b) embrace spiritual domain of being human, which includes suffering and injustice; c) learn to living with paradox, to make the best out of the worst of times; and d) offer spiritual and inspirational support as necessary. Using Walsh's conceptual approach, clinicians may be in a better position to help adolescents and their families to gain insight about their illness experience, to appreciate the strengths and vulnerabilities of each family member and the emerging adolescent developmental needs, and to recognize key family beliefs that explain their illness narratives and relationships with healthcare professionals. Clinicians can also foster the development of resilience through their direct interactions with DMD patients and their families. The discussion regarding the diagnosis and management of DMD should take place with both the child/adolescent and parents present, and they should be encouraged to participate in all treatment decisions. The treating physician should provide written information about the illness and realistic expectations regarding potential benefits of potentially new diseasemodifying therapies. Financial resources including funding for adaptive equipments should

relationships, to help shape and sustain them to meet life challenges.

be offered regardless of parental employment status or family income.

proactive planning and alleviate unnecessary anxiety.

**10. Conclusion** 

Parents should encourage their teenagers to meet age-appropriate developmental goals, including gradual transfer of decision-making authority over time. A resilience-oriented approach also draws upon extended family and peer resources as potential mentors and positive role models in mediating adolescent adjustment to DMD. Clinicians can help families resolve conflicts, identify coping strategies, develop realistic goals, and seek help when needed. Periodic family meetings and multidisciplinary consultations for anticipated transitions, including going away for college and/or transfer to adult services, can facilitate

DMD is a challenging chronic disease that requires multidisciplinary collaboration of healthcare professionals and individualized treatment approach for the adolescent patients The authors would like to thank the families who participated in the research studies, the contribution of Dr. Melanie Moore, other collaborators, research assistants, and the paediatric neuromuscular clinic staff in Calgary and Toronto for their on-going support. Funding was provided in part by the Alberta Center for Child, Family, and Community Research, the Stichting Porticus Foundation, the Cooperative International Neuromuscular Research Group, and the Alberta Children's Hospital Foundation. The Duchenne muscular dystrophy Family Needs Survey (DMD-FNS) is available by request.
