COMMUNITY
Engagement is really important for wellbeing and happiness. The hustle and bustle of life whirling around us, particularly when you have a child with special healthcare needs, can be overwhelming and, at times, socially isolating. Building positive relationships within the community can be a life-changing experience and can facilitate practical and emotional support. The types of communities we have access to nowadays are very different to the traditional sense of community, which centered around the immediate local geographical area. As a parent of child of special health care needs it can be useful to explore a wide variety of community supports to get a sense of what is available to you but also to figure out what works for you.
Building and nurturing relationships with friends; with local, national and international health care professionals, who have expertise in your child’s health condition; with educators who meet your child daily; and importantly with others who share your experiences can make the everyday joys and demands of parenting an easier and more meaningful journey. For instance parent-driven support groups can provide emotional and social support, facilitate positive relationships, provide informational support (through knowledge and experience), and build a sense of personal empowerment.
Videos - LIVED EXPERIENCE
In these videos parents discuss the practical challenges faced while parenting a child with special healthcare needs, they also discuss the role of peer support, the challenges faced with healthcare providers and educators, and the impacts of bias and stigma.
Videos - professional Advice
In this video, Dr Linda Campbell talks about the biases and stigma faced by parents when engaging with health professional and some ways to overcome these barriers. Dr Campbell also talks about how to facilitate better support from doctors, educators, and other allied health professionals, how parents can become effective advocates for their child and the types of resources available to families of children with special healthcare needs.
In this interview Dr Burnett talks about the biases and stigma faced by parents and how to facilitate positive partnerships with doctors, educators, and other allied health professionals to promote better outcomes for their child and family.
Dr Tracey Dudding-Byth talks about the challenges faced by parents when engaging with health professionals and some ways to develop positive relationships with your child’s doctors. Dr Dudding-Byth also shares her experience on how parents can become effective advocates for their child and the types of resources available to families and parents of children with special healthcare needs.
In this interview Dr Chris May talks about the challenges faced by health professionals when engaging with parents of a child with special needs. Dr May also also provides recommendations on how to facilitate better support from health professionals and the types of resources available in the community to support parents. He also talks about the challenges faced by fathers of children with special needs and the strategies used by fathers to manage the difficult emotions associated with parenting their child.
In this video Nicole talks about the challenges face by parents when engaging with health professionals. Nicole provides recommendations on how to improve relationships with healthcare professionals, how to be an effective advocate for your child . She also provides some information about community resources available to parents of children with special needs.
Interview with Maria Kamper - President VCFS 22q11 Foundation INC 22q Foundation Australia & NZ.
Interview with Heather Renton, the founder of Syndromes without a name (SWAN).
Wellbeing By Community engagement
Psycho-education AND TIP SHEETS
Peer Support
For parents of children with special healthcare needs, finding support groups with parents who experience similar situations can help provide parents with the social and emotional support they may need. Support groups provide shared social identity, learning from the experience of others, personal growth, and supporting others. Support groups become a valuable resource for parents coping with the emotional, physical and social challenges of caring for their child, themselves and their family. You can find some useful links below.
Expectations
When there is a discrepancy between our, often unspoken, expectations and what we actually receive from others it can result in conflict. This reading is about unrealistic and unfulfilled expectations and on how to clearly communicate with others.
Managing Stigma
Stigma not only affects the individual with a special healthcare condition, it also affects others they are closely associated with, e.g., parents and siblings. Research shows that stigma towards parents of children with special healthcare needs can lead to several adverse outcomes that can impact the overall functioning of the parent and child. Stigma can affect the psychological wellbeing of parents and can lead to parental stress, increased caregiver burden and a lower quality of life. Experiences of stigma may also lead to low self-esteem and reduce help-seeking behaviours.