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Sugar and Spice Blog series
Collaboration of Stakeholders for Positive Outcomes – Part 1
July 28, 2021

For a child who develops Type 1 diabetes at a very young age, the parents, healthcare professionals and the teaching fraternity become the primary stakeholders in ensuring the healthy growth of the child without any life-threatening episodes of hypoglycemia or the adverse impact of hyperglycemia (consistently high sugar blood levels for a long time). Essentially, it is the parents, especially the mother who plays a major role in the management of diabetes in her T1D child. This includes not only ensuring that the child gets timely  insulin doses as recommended by the doctor, but also  the right kind and portion of food, involves in physical exercises such as play and monitors sugar levels regularly, keeping low sugar episodes at bay. Initially, till learning happens on the part of the mother/parents or the child, regular visits to the diabetic doctor are indispensable, till such time that both the parents and the doctors are confident that day-to-day handling of sugar levels is satisfactory to both parties.

Collaboration of Stakeholders for Positive Outcomes

Type 1 Diabetes for children and young adults is a societal issue and needs a collaborative care approach by all stakeholders concerned, to ensure that we develop healthy young adults who can contribute to the society effectively. A study has proved that the collaborative care model that includes multiple health care professionals with different professional backgrounds in collaboration with patients, families, caregivers and communities to deliver optimal care has resulted in positive outcomes such as achieving targeted HbA1c levels, fasting blood glucose, body mass index,, body weight, blood pressure, hospitalizations, risk of diabetic-related complications and mortality.

I would like to conclude this blog series with a focus on the role of each stakeholder in diabetes management of T1D individuals simply because if this condition is understood well, we will have millions of young adults world over who can grow up to be healthy and well-adjusted individuals and can live well contributing to various fields. Even today we have several T1D persons amongst us who are doing amazing work in their chosen fields and continue to inspire everyone to pursue a path of love, kindness and support.

Self-care in Persons with T1D

 When infants and children are diagnosed with type 1 diabetes, it is the parents who play a major role in diabetes care, fixing appointments with doctors, purchasing medicines and preparing diabetes-friendly food apart from the usual responsibilities such as helping with school work, play and social life.

During the initial years, the T1D child feels lost, is overwhelmed by the responsibilities of managing diabetes at a very young age and is traumatized by the continuous need for multiple injections and finger pricks. At this point in time what is essential for the child is a lot of love, support, kindness, understanding and a gentle but firm approach, apart from continuous handholding by the parents. Over protection or austerity, both affect the child adversely. The reaction of the child to this condition initially is one of horror, denial, non-acceptance and sometimes rebellion.

Apart from succor from parents and family members, it is important for the parents to ensure that the child learns to accept the condition and for this, unconditional acceptance by the family is essential. This will help the child develop self-confidence and also help prevent depression, melancholy, withdrawal and self-loathing. Parents must play an important role in developing self-esteem and self-worth in the child.

By the time the child steps into teenage, management of diabetes should have become a part of their life and it is time for them to step into the zone of self-care, with the guidance of parents and healthcare professionals. That is also the time when they face a lot of challenges after completing school and are on the threshold of managing college, friendships, relationships, money and sometimes work.

By the time they step out of teenage, they should be able to manage their everyday insulin needs, whether it is injections or devices, be able to monitor their sugar levels using a sensor or finger-prick method and assess the food portion size as well as the quality of food and step towards independently handling doctor appointments and check-ups. Self- discipline and a systematic approach are the most important qualities the T1D child must acquire to lead an independent life without hassles.

T1D individuals need to lead well-planned and systematic lives. They need to organize their medicines and supplies, fix appointments with their doctors at regular intervals and have check-ups as advised by their doctors. They need to have a buffer stock of medicines and supplies till they can get the next lot of supplies. All T1D should always carry healthy snacks and glucose capsules or juices etc., for emergency low sugar dips and water with them. They need to keep the contact details of their doctors and a card saying they have T1D and directions on how to deal with the situation if they are found unconscious. Close friends and colleagues should know about their condition and how to help them in case of need.  In today’s world, it is easier for them to be in constant touch with their parents and doctors through WhatsApp or their smartphones.

Parents

Parents are the most important stakeholders in the case of T1D individuals. Other than normal parental responsibilities, they need to take steps to ensure that their child is safe in school and gets the same opportunities that any other child gets. They have to go the extra mile to develop a healthy attitude in the T1D child, teach the child acceptance, and guide the child to become responsible about self-care. They need to be in constant touch with the school teachers and healthcare professionals, educating the school teachers and classmates about the condition and to deal with their child with acceptance, support and understanding.

Family support has been found to be the strongest predictor that teens and young adults will stick with their diabetes treatment plan. While supporting the child and exhibiting compassion and understanding, they must also instill a sense of self-discipline in the child. As the child becomes confident of taking on aspects of self-care gradually, parents must respect and trust that the child would be able to display good diabetic self-care. The child must also be confident that parents are always available to help and support them in case of need. In addition, the child must be comfortable with channels of communication at the parental home such that they feel confident enough to disclose any problems, including relationships issues, career insecurities, monetary problems etc. All these will pave way for a confident and self-assured healthy adult who can handle diabetes self-care with finesse.

Siblings

Siblings play a huge role in the lives of T1D persons, and in families with a healthy outlook, they can emerge to be additional pillars of support, apart from the parents or partners. In families with a T1D child, it is a tight-rope walk for the parents to attend to the child and also make the sibling feel equally taken care of. During the initial stages of diagnosis when parents are grappling with the issue themselves and are not aware of the constant demands of diabetic care  on their time and energy, it is natural for siblings to feel neglected, especially when they face their own struggles and problems , whether it is the school, friends, lessons or their own needs.

Collaboration of Stakeholders for Positive Outcomes The only way to dispel such feelings is to try to be available to the sibling too, as far as practicable and also involve the sibling in the  diabetic care , which will not only develop understanding on the part of the sibling, but will also make them feel wanted and not left out. Siblings can be a huge support and grow up to be a close friend and confidante of the T1D person over the years. Siblings are also protective of their sister or brother and can be a great ally in school. T1Ds with an understanding and supportive sibling will experience much less stress than those who do not.

The bond that a sibling develops with a T1D person is an assurance to the parents that there is someone who has been with their child right from the beginning, and will be there to look out for their T1D child even after them. Siblings of children with disabilities tend to develop a compassionate approach toward human interactions and also develop great maturity and dynamism at a very young age. They  can evolve as mentors to their T1D sibling, irrespective of their age, guide them and stand as a strong pillar of support, wherever they are and however involved they are in their careers and family lives.

Note:  In this series, I will be putting down facts and events that have happened to me as a matter of fact. Anything I say in these articles is based on my own understanding and experiences and not on any scientific research.  I would also like to mention here that I would be drawing upon  those experiences of my eventful life, which I believe are relevant to the discussion of the emergence of autoimmune conditions in my child, who we think is  different from many other children. I will be trying to make it as relevant to parents of T1D children as possible, but with a plea not to infer anything, compare or follow any of the practices we as a family followed. Simply because, every family is different, every child is different and so are circumstances. The takeaway should be confined to the existence of various possibilities, opportunities and a positive approach toward creating a fulfilling life for your child.

 

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