The relationships between our Homecare Worker (HCW) and their client and family is a unique one. This collaboration, trust and support enables the link towards better health outcomes.
Due to the nature of chronic health conditions such as CF, management and treatments are adjusted according to the individuals’ symptoms and progression of the condition over time. A client-centred approach with the clients driving and contributing to the management of their health, facilitates individuals to have a more positive outlook. This self-management model starts from diagnosis and requires the support and guidance of all members of the tertiary and community CF team to manage the many challenges that people living with CF face.
At CFWA our HCWs, in collaboration with the CFWA physio, community nurse and the treating tertiary CF teams, encourage self-management and the approach is targeted to the specific stages and the individual client.
RED interviewed our HCW Ishbel, about her role and how she helps support her clients and families on the road to self-management:
Stage 1. 0-3 years (Emotional adjustment/parenting/child care/positive reassurance)
How do you, as a HCW, collaborate with your families to provide support in the early years?
With my initial meeting with the family, I focus most of my attention on the parent and their child’s experiences so far. Collaborating with the parents to establish or maintain a solid routine is important and it pays off in the long term.
I provide information about the support services CFWA offer such as equipment loans or subsidy information and availability of education sessions at day care centres, kindy and/or with extended family. I also keep the families informed about CFWA support events such as the Parents Retreat and the Ladies High Tea, which are events where parents have an opportunity to chat with other parents in a relaxed atmosphere and establish some new friendships.
How do you keep the child interested and co-operative?
I give lots of positive reinforcement, clapping, smiling and having fun. Playing afterwards shows that I am here for fun too. Using the TV or iPad to watch cartoons during percussion is a great distraction. I always ensure the parent is happy with what I am doing – usually they are happy to have some time to themselves!
Stage 2. 4-9 years (Move to primary school/participation in own treatment)
This is a time for increasing independence. How do you help the child develop new skills, stay engaged, actively participate and continue to support the family?
I like to make contracts with the kids who are learning to read and write. I encourage their input and I get them to sign their contract to signify that they agree and have made a commitment to their treatments. I find this a very positive step towards them gaining some control.
At this age the kids begin to ask questions about why they have to do their physio. It is important to check in with parents to see what they know or what they want their child to know. I always listen and try my best to answer their questions as honestly as possible.
Getting kids involved with building and washing their neb equipment is good too. Mum or dad have usually been doing this day-in and day-out for years. It is good for the kids to realise they are responsible for their equipment. I make it fun and we always finish washing up with a bubbly hand ‘jacuzzi’! All these strategies assist in building a firm foundation in developing self-management routines and skills.
Stage 3. 10-13 years (Primary to high school/more formally introduce independent health care behaviours)
How do you manage adherence at this age?
When daily physio has been a part of your life for 10 plus years, I think the kids find it tough and really isolating. As they should, they want to be more independent and they start socialising more with friends and noticing the things they have to do that their friends don’t. I think it is important that friends see the physio-side of things, so that they can gain some understanding about living with CF and have the opportunity to offer encouragement. I always try to remember their friends’ names and get to know them too because they are probably the most important people to them at this age.
Even if the child has had a good routine from the get-go, they still question why they need to adhere to daily treatments. I find calling a challenge is a helpful motivator! For example, ‘can you do physio every day for a whole month?’
Making them tick off charts made for their bedroom walls or filling in a personalised journal shows them what they have achieved, and providing small incentives helps too. Kids don’t really see the health benefits of daily physio and want short-term gratification, which is usually a fancy donut!
I like to ask about after-school activities and sports and what they like to do and tell them about famous people, or just instafamous people with CF, so they feel less alone. A lot of kids are on Snapchat, Instagram and Musical.ly so that is a way to keep everything current and fun.
How do you bring CF education into your sessions?
Again, checking in with parents to see how much they are happy for me to explain to their child is very important, as well as keeping it all relevant to the individual child. Education is ongoing and is generally driven by the child’s inquiring mind. I answer in language that the kids understand and am honest but always guided by the parents.
I have asked kids to explain to me what their tablets are for. This way, they gain an understanding of why they have to take them and a little about how they work. YouTube is really helpful with this too.
Stage 4. 14-15 years (Starting to think about life goals/risky behaviours/moving towards independence)
How do you manage building independence? How do you encourage ongoing health literacy – managing medications, cleaning of equipment etc?
Working closely with the services team at CFWA is essential as they communicate regularly with the CF team at Princess Margaret Hospital and the CFWA services team support my role by providing updates on current treatments and treatment goals. At this age, teens can omit important details and changes made at their recent clinic appointments or just not know! Having input from CFWA prompts me to inquire about their clinic visits. For example, I would ask what they thought about their current lung function and reinforce the rationale for their treatments and continue to encourage routine, independence and self-management.
Being honest and frank about the consequences of regularly not taking medications and frequently missing physio is sometimes necessary, as they can experiment with “hmmm let’s see how I feel if I don’t take this tablet.”
Being equipped with the tools and skills learned at our HCW training sessions and meetings, I like to take the opportunity, when it arises, to spend extra time chatting with my teens about the unfairness of life and the hand they have been dealt. Having someone to talk to that is not a parent, a family member, friend or health professional, can be helpful. Having someone that you have learned to trust just to talk to about how you are feeling, and your challenges, can assist in the transition to adulthood and in becoming an independent self-motivated and self-managed individual.
With the future looking brighter for most people living with CF, I talk to them about plans for employment, enrolling in university, or plans to apply for an apprenticeship. I regularly reinforce their health literacy, with chats about current medications and treatments, encouraging equipment cleaning and promoting responsibility for their own care.
Stage 5. 16-17 years (Peer influence/risky behaviours/acceptance of CF/semi-independence)
This is somewhat of a daunting time for this age group, especially with the thoughts of leaving the safety network you have become so familiar and comfortable with at the paediatric hospital. How do you support your older teens?
I am lucky in the sense that the teens I see seem to have got off on the right foot with groups of friends and know that they don’t want to go down the wrong path. Being that I am young(ish) and can share stories from my late teens (that don’t feel too far away!), I’d like them to feel like I am a relatable adult that comes around a couple of times a week to hang out while they do physio and other treatments. I make sure I ask the teen straight out about aspects of their condition and how their days have been when I haven’t seen them, but respect times of silence if that’s the vibe. I also tell them funny stories about myself so they know I am a human being and usually we end up having a good laugh.
I have had teens ask me questions about things that have made my eyes widen in horror, but I think it’s good they can trust me. I’d rather they asked me and be informed rather than isolate themselves from peers. Keeping them motivated for their future and offering practical support for things happening after high school, holidays, learning to drive etc. I really hope they feel like I am a person they can collaborate with into adulthood.
I am lucky to be a part of a really strong team within CFWA that provides practical answers for just about anything that CF will throw at families. I feel like I am not usually lost for options when I am faced with a family with questions or issues and while we are not perfect, I think we all do a pretty good job!
Article from RED Magazine, Edition 1, 2018.