Opportunities for growth in families with a child affected by a developmental disorder

University of NewcastleA Research has done that when a child has a developmental disorder the entire family experiences a change in roles and expectations. Some families manage well, and others struggle to cope. Supportive family functioning is beneficial for all children and can also improve the quality of life for family members including siblings and parents. There is little research investigating the factors that contribute to this strong family functioning in Pakistan and in Australia amongst people with Pakistani origin. This study has been approved by the Human Research Ethics Committee at the University of Newcastle.

We are seeking to recruit parents of children with developmental disabilities. We are specifically seeking parents whose children have a disorder of a genetic origin or where the developmental disorder was present at birth even if recognised or diagnosed later. We are not in this instance seeking parents with children who have acquired developmental disabilities, that is disabilities caused by events after birth such as traumatic brain injuries or illnesses such as meningitis or severe asthma. 

You are invited to participate in the research being conducted by Dr Linda Campbell and Ms Shagufta Alam at the University of Newcastle, Australia.

Participation in this research is entirely voluntary as is involvement in the recruitment process. Should you not wish to assist you do not have to or they may decide to stop at any time without explanation.You have the right to have any questions about the study answered prior to assisting with recruitment. The researcher is available via email to discuss the study further with any of your staff should they wish to at any time.

Advertising material for the study will be provided including A3 posters and A6 take-home flyers for interested parents.

  • To display advertising materials within your organisation. For example, on brochure stands and or tables and posters on walls where appropriate.
  • Briefly advise parents of interest about the study and make information available to them.
  • If parents are interested, provide them with the information sheet, consent form and survey in an envelope or alternatively provide the participants with the information about the online study if appropriate.
  • If suitable, the researcher will brief your staff about the study and provide the opportunity to answer any questions and or concerns the staff may have prior to recruitment commencing.
  • Your feedback is invaluable and should your team have any feedback or suggestions regarding the recruiting process we ask that this be forwarded to the research team.
  • If agreed, collect the completed surveys when returned in the sealed envelopes and return the envelopes (still sealed) to the researchers as per agreement.

For parents participating in the research they can expect to invest approximately 60 minutes completing a user friendly online survey or may opt for a paper-based research pack provided by us to you.  The study includes questionnaires exploring the impact of the child’s disorder on the parents, parental well-being, resilience and growth.

You are not expected to invest much time in assisting with recruitment for this study. Firstly, it would only take a few minutes to display advertising material. 

The participation process should involve no physical harm, emotional discomfort and or other risks that extend beyond your everyday working routine.

Assistance in this study is entirely voluntary. There are NO reimbursements in return for your help however, we know you and your staff’s time is valuable! We are sincerely grateful for any assistance and hope that satisfaction is found in the knowledge that this is an important area of research that you and your team are helping with. We will provide you a summary of the research outcomes at the end of the study.

The University of Newcastle is committed to protecting and preserving a participant’s right to confidentiality. We therefore request that any personal details acquired during the course of this study be handled with the utmost respect. This includes ensuring that any identifying information is managed in a secure manner and only utilised for the purposes for which it was obtained. Any information is only to be provided to the research team using the phone, email and postage details provided to ensure the security of personal information.

The information will be reported and presented as a thesis to be submitted for Ms Alam’s degree with the intention for publication in scientific journals. Individual participants will not be identified in any of the reports arising from the project. All participants and organisations affiliated with the research will be provided with a summary of the research findings at the completion of the study.  

Should you have any queries regarding the study, any of the investigators will be glad to answer your questions at any time. Contact email and phone details have been provided in this document for your convenience.

If you or your organisation would like to assist us in this study, please complete the attached consent form and return this to linda.e.campbell@newcastle.edu.au. Your help is greatly appreciated and we are very grateful for the opportunity to work with your organisation.

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