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Children’s Health Research: Audience Interest

The audiences that are interested in children’s health research in the UK are the healthcare specialists, healthcare organizations and universities, and families of seriously ill children. Some reasons why the organizations and specialists are interested in children’s health research are because these projects help them develop new skills, gain more knowledge, discover information that will help the pediatric medicine field, and lets them improve the lives of the children. The reason why the family members of an ill child are interested is to find hope during the medical crisis.

HEALTHCARE SPECIALISTS

  • The healthcare professionals and scientists from UCL have developed a project and scholarship of medical research for child health.
  • The purpose of the project is to research gene-therapy, regenerative medicine, stem cells, immunity, infections, childhood development, neurosciences, cancer, and metabolic defects on children.
  • MSc and Ph.D. students from the City University of London do child’s health research projects about maternity care, community health, education, perinatal mental health, public health, and maternal and child health.
  • A reason why the doctors conduct research projects in the universities is to develop the medical and research skills of the healthcare professionals, scientists, and students involved.
  • The chief scientific adviser of the UK’s Department of Health and Social Care, Professor Chris Whitty, explained that research is essential for the advancement of child healthcare and pediatrics.

HEALTHCARE ORGANIZATIONS AND UNIVERSITIES

  • The University College of London (UCL) is one of the organizations interested in conducting research for the health of children and using it in the education and development of its students.
  • Some other organizations interested in children’s health research are the National Institute for Health Research, Health Data Research UK, Innovate UK, the UK Research and Innovation, and the Royal College of Pediatrics and Child Health of the UK (RCPCH).
  • The RCPCH conducts and supports pediatric research in the UK and around the world, promoting hundreds of research projects and offering financial grants.
  • The children’s health research projects backed by the RCPCH, focus on topics like asthma on children, ataxia telangiectasia, therapy, medical equipment used in healthcare for children, cancer treatments, among others.
  • Great Ormond Street Hospital (GOSH) is also a partner in the MRes project for children’s health, leading a charity to support children’s health research about cancer, muscular atrophies, birth defects, immune system disorders, heart conditions, and metabolic conditions.
  • The RCPCH, the Wellcome Trust, and the Medical Research Council are members of the UK Child Health Research Collaboration (UKCHRC).
  • A reason why the organizations are interested in research is to make advances in pediatric healthcare and improve the life, well-being, and the health of the children.
  • The UKCHRC is interested in using children’s health research to involve the parents of ill children, raise awareness, support campaigns, charities, and foster engagement between the charities, industry, and public sector funders.
  • The Children’s Research Fellowship Fund is dedicated to support and bring opportunities for post-doctoral research.

FAMILY MEMBERS OF SERIOUSLY ILL CHILDREN

  • Charter is a program that supports families, seriously ill children, and healthcare professionals who want to understand the importance of children’s health research or want to be involved in a research project.
  • The family members of seriously ill children demonstrate their interest in children’s health research by participating in research projects from universities about maternity care, in screenings for birth-related PTSD, analysis of emotional expressions between mothers and children, online therapies to research perinatal psychological issues, among others.
  • Another reason why the family members of ill children are interested in supporting research activities and charities is because, in cases like rare medical conditions, these give them hope that they will get a better diagnostic or to discover a more effective and less painful treatment for their children.

Seriously ill Children: Impact on Others

Based on the study conducted by a pediatric palliative physician, Dr. Alastair McAlpine, seriously ill children care the most about the time they spend with their family, laughter/humor, memorable moments, small acts of kindness, story time, and their family’s well-being. The parents, siblings, and grandparents of seriously ill children suffer a negative impact on their relationships, social life, emotions, health, finances, and more.

WHAT SERIOUSLY ILL CHILDREN CARE MOST ABOUT

DR. ALASTAIR MCALPINE’S STUDY OF SERIOUSLY ILL CHILDREN

  • Dr. Alastair McAlpine is a physician dedicated to pediatric palliative care and works with children and young patients with life-limiting illnesses and life-threatening diseases.
  • He evaluated his patients’ attitude towards life, to understand what they care about, what makes them happy, and gives them joy, as part of an effort to maximize the quality of their lives.
  • The main takeaway was that children care the most for human relationships, pets, and moments. He summarized the aspects that were most valuable to these children into six lessons:
  • The results in detail were posted as a thread on Dr. McAlpine’s Twitter account on February 1st, 2018. The thread has received over 91.7 thousand retweets and more than 153 thousand likes.
  • This analysis was published worldwide and even addressed by the UK’s Independent newspaper and Australia’s Essential Kids online magazine.

SERIOUSLY ILL CHILDREN’S IMPACT ON FAMILY

IMPACT ON RELATIONSHIPS

  • A survey conducted in a charity for UK children’s palliative care by Together for Short Lives, indicated that 84% of the families who take care of a child with a life-limiting/threatening disease feel alone or isolated since the child’s diagnostic.
  • 90% of the families surveyed said that their friendships, relationship, or social life were negatively impacted after the diagnosis.
  • 74% consider that the relationship with their spouse or partner was affected.
  • 87% mentioned that the relationship they have with their immediate family was also impacted.
  • 50% of the bereaved families expressed that their friends and family’s relationships were affected by the child’s death.
  • 80% showed a lack of interest in having a social life since the child was diagnosed.
  • 58% said they reduced their social activities to less than one per month.
  • Some families expressed that this social exclusion has been caused by their exhaustion, their recurrence to cancel plans for medical emergencies, depression, focus on the ill child, lack of spontaneity for the safety of the child, etc.
  • The stress of having an ill child affects the relationship between the spouses/partners as some take work as an escape or build resentments for the different way each part deals with the circumstances.

IMPACT ON PARENTS

  • Parents may face stress of wanting their child to be better, having a limit to what they can do for them, the stress of what they can’t do for them, believing the child is capable or should do more to get better, hurt from what their ill child’s limits, seeing their child upset or hurt, tolerating the child’s pain or attitude changes, etc.
  • Throughout the disease, the parents’ hopes vary and this impacts the way they cope with the situation or make medical decisions at different stages.
  • Parents with seriously ill children face difficult health care decisions. They base these decisions in factors like the doctor’s recommendation, personal beliefs, their perception of what a good parent would do, personal values, urgency, and hopes for the child’s future.
  • The parents’ focus is on being available for the child, which leads them to put their own future aside and focus on the well-being of the child.

IMPACT ON SIBLINGS

  • Siblings who try to be involved give priority to staying in contact with the ill child. When communication with the ill child is challenged by distance, it can be more difficult.
  • For some younger siblings, it’s difficult to understand why the ill child can’t spend more time with them, why the ill child doesn’t want to interact or stay in contact. In some cases, it requires help from their parents to understand the behavior of the ill child.
  • Healthy children with ill siblings are impacted on their relationship with the family from reduced communication or a feeling that their needs are being ignored, getting little attention, or suppressing their own emotional needs to help their ill brother or sister.
  • These siblings develop their ways to deal with the circumstances and their emotions, even developing skills to meet their needs or adopting roles of caregivers for their ill sibling or parents.
  • Sometimes healthy siblings isolate themselves from other healthy relatives as they feel they are not being listened or because they don’t want to be a burden.
  • In some cases, the healthy siblings become unhappy, extremely self-sufficient, get closer to their family, or start resenting their family and creating distance.

IMPACT ON GRANDPARENTS

  • Grandparents can feel impacted if they live far from the ill child and are unable to stay close to the family members, making them anxious while waiting for news about the situation.
  • Some grandparents find themselves fighting to be the anchor of the family, adopting a supportive role.
  • They struggle with the possibility of their grandchild’s death, pain from the suffering of their grandchild and their child (the parent), or acquire responsibilities like working on the back to support their family and bringing stability to the child’s parents or siblings, etc.
  • Sometimes grandparents take financial responsibilities to support the suffering family, even acquiring debts to cover the hospitalization costs.

IMPACT ON FAMILY

  • Families will seriously ill children find themselves in a world filled with treatment plans, hospitalizations, medical bills, and increasing responsibilities like being on top of the sick child’s needs or needing to ask a sibling to be a donor.
  • These families also need to make plans when the incorporation of a child who survives, cope with the emotional impact of a sick family member, deal with financial and time impact, or emotional effects from a loss.
  • Caregivers of family members like children, spouse, siblings, or parents with serious illnesses, experience effects from the stress they live like exhaustion, lower defenses against common sickness, sleep deprivation, feeling forgetful, impatient, or irritated, being unable to enjoy things, social withdrawal, etc.
  • Caregivers also suffer depression and anxiety with symptoms like overeating or loss of appetite, sleeping issues, lack of energy, lack of interest, difficulty to make decisions, remember, or focus, feeling restless, crying excessively, headaches, or in some cases substance abuse, muscle tension, anger, and excessive worry.
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