Living Well With Cystic Fibrosis

LWWCF Insights:
Social Support

Social Support – What Does It Mean?

Social support is help you receive from your personal social network – family, friends and community. This support can be:

  • Practical (e.g., financial assistance, transportation, child-care, help with domestic chores)
  • Psychological/emotional (e.g., having someone who will listen to you, validate your feelings and make you feel emotionally supported)
  • Informational support (e.g., a CF social media group who offer helpful information about resources and living with CF).

Having good social support is important for anyone, but particularly when you are living with the demanding daily treatment regimen, hospitalisations, mental health challenges and changes in physical health that can come with CF. The good news is there are SO many ways to increase your social support!

How Do I Foster Social Support?

The following steps aim to support you in fostering social support. These steps can be used to make changes in any area of your life, or reach any goal you have, and most importantly help you to live well. You can use the Living Well Worksheet to help guide you as you work through these steps.

1. Know you are in control

While you may not be in control of what stressful events happen in your life, you are in control of building a social support network of people who care and can help you when things get rough.

2. Identify how you are living now, and what you want to change

  • Ask yourself questions about the current level of support you have both in day-to-day life as well as difficult periods:
  • Who currently supports me? What type of support do they provide, and how helpful is it? Are there areas of my life or scenarios where I lack social support?

3. Make a plan

If you feel like you need to boost your social support, it is time to make a plan! To do this:

  • Identify clear and specific goals related to your challenges, needs and areas you want to make changes (e.g., I need more support with childcare and domestic tasks during CF exacerbations).
  • Recognise what is motivating you to improve your social support (e.g., I want to improve my physical health) as this will help you persevere when things get tough.
  • Finally, identify strategies. They can be ones you’ve used before or new strategies. To help you get started take a look at the list below.

4. Put your plan into action

  • Set yourself a timeframe so you know how long you will try your plan before reviewing how it’s going.
  • Remember that building social support takes time, so be realistic.
  • Then just go for it, do what you have planned to do and have fun!

5. Review

Review what is working well, what you need to change and try again – don’t give up!

“Realising that I may not be in control of what happens to me, but I am always in control of how I respond and my choices, has changed my life.”

– Young adult with CF

Strategies to Foster Social Support

  • Ask for and accept help. Our family and friends are often happy to help, but we need to ask and be specific about what we would find helpful.
  • Join groups or volunteer in your community. This can be a great way to do something you enjoy, give you purpose, get to know people in your community and make long-lasting friendships. Online groups can also be a great source of support and information.
  • Support is infectious. Consider going out of your way to do someone a favour, chances are they will be happy to return it.
  • Reflect on your current relationships. Are there friends, family, neighbours, colleagues or existing groups where you could develop your connections?
  • Start talking. Strike up conversations with people when out and about in your community, at work, in the coffee shop queue or even in the local supermarket. This can help you practice social skills, build confidence, and you may even make a friend.
  • Keep in touch. Schedule a regular catch-up with the people you care about, even if you feel you are too busy. Sending regular messages to check in can help nurture these relationships and maintain your sources of support.
  • Talk it out. If you find that you are stuck in a pattern of struggling to make or keep friends and you are not sure why, you can consider talking it through with someone. A mental health professional, in particular, may be able to offer helpful insights and advice.
  • Your healthcare team are key! Aside from your family and friends, your healthcare team are the people most invested in your health and wellbeing. If you are struggling with a lack of social support, reach out so they can provide any information and support you need to help you live well.

Hints and Tips

See the other LWWCF Insights resources for more topics and strategies to help you to live well. You can use the Living Well Worksheet in partnership with any of these.

Acknowledgement:

This resource was funded and facilitated by Vertex Pharmaceuticals (Australia) and developed by The Med Collective through collaboration with members of the LWWCF initiative Steering Group. We wish to acknowledge the content contribution and intellectual property of Dr Lucy Holland and Maggie Harrigan, and most importantly, the consumer and health professional experts who shared their experience and expertise to develop this work.

The resources in the LWWCF website and resource directory should be used in consultation with your healthcare practitioner or mental health professional.

References used to develop this LWWCF Insights Resource:

1. Baumeister RF, Leary MR. (1995). The need to belong: Desire for interpersonal attachments and fundamental motivation. Psychological Bulletin, 117(3), 497–529. 2. Flewelling KD, Sellers DE, Sawicki GS, Robinson WM, Dill EJ. (2019). Social support is associated with fewer reported symptoms and decreased treatment burden in adults with cystic fibrosis. Journal of Cystic Fibrosis, 18(4), 572-576. 3. Gulledge A, Miller S, Mueller M. (2021). Social support and social isolation in adults with cystic fibrosis: an integrative review. Journal of Psychosomatic Research, 150, 110607. 4. Torun T, Çavuşoğlu H, Doğru D, Özçelik U, Tural DA. (2021). The effect of self-efficacy, social support and quality of life on readiness for transition to adult care among adolescents with cystic fibrosis in Turkey. Journal of Pediatric Nursing, 57, e79-e84.