The aim of this study was to explore parents' perceptions of the frequency and difficulty of stressful events and coping strategies during CMC care. A qualitative component provided additional meaning to the data collected in the surveys and facilitated further understanding of the factors influencing the coping strategies used by CMC parents.
Describe levels of frequency and difficulty of parental stress when caring for children with medical complexity
Describe types of coping strategies (dysfunctional, problem-based and emotion-focused) used by
Describe associations among children’s characteristics (gender, age, race and date of diagnosis)
Examine the impact of caring for children with medical complexity on parents through qualitative interviews
Wages lost by the parent providing the care were also more than $17 billion per year.4 The families of CMC had three times the health care expenses of healthy children.3. A lack of an accepted framework to address parent and child characteristics associated with parents' levels of stress and coping strategies exists in the CMC population. Various coping strategies are used by parents as they react to stress in caring for their CMC as described in the Transactional Model of Stress and Coping (Figure 1).8 Parents' levels of stress influence outcomes of their type of coping strategies.
Due to the lack of literature examining stress and coping strategies in parents of children. Limited studies examine how childhood illness characteristics, the etiology of the underlying illness, and date of diagnosis influence parents' coping strategies. Variability in these factors may be associated with a diversity of coping strategies used by parents.
The primary gap identified in the review of the literature is the lack of studies of child and parent characteristics of parents of CMC associated with parenting stress and types of coping strategies used. Previous work on coping strategies of parents for CMC has focused on some demographic characteristics of the parent.45 A review of the literature did not find a study that examines the constellation of both parent and child characteristics and their relationships to the level of stress and coping strategies of parents to CMC. Two main categories of coping strategies are widely recognized: problem-focused coping strategies (efforts to do something active to alleviate stressful circumstances) and emotion-focused coping strategies (efforts to regulate the emotional consequences of stressful or potentially stressful events).”8.
Navigating health care system experiences and interactions
A father of a 6-year-old girl said, "I just felt like a child with all my daughter's complex needs, it would be nice if there was a doctor who kind of jumped in and helped guide. A father of a 8-year-old boy said, “There's a great person at Complex Care who can answer any question I have, so I don't hesitate to call her.” A mother of an 11-year-old boy said, “I can't ask for better people than the complex care team and his pediatrician.” Other staff interactions negatively impacted parents, such as this mother of a 22-month-old girl who stated, “And we didn't get along with the nurses on that unit. I didn't get along with many of the nurses, but that's just the way it is, but the ones I didn't get along with didn't know how to do their job.”.
I kind of equate it to a lot of men coming in and out of her life.” One father of an 8-year-old boy said, “The huge missing piece that I've found is someone to help you navigate all the systems. But you don't think about it and you feel that way, I kind of wish, like someone said, that you should consider buying a van when he's in a big wheelchair. The mother of an 11-year-old boy said: “I wish doctors weren't so real like this is what you're going to be dealing with.
I know it sounds weird, but they kind of treated us like we were invisible, even when we were no different than parents of normal kids, but like we didn't deserve their time because.
Emotion and Cognition
A mother of a 15-year-old girl said: "We want her to be able to enjoy the ocean and the beach like everyone else." The mother of a 5-year-old girl felt the same way. A mother of a 6-year-old boy said: “I don't want to make it sound sad. He's a great little boy." A mother of a 22-month-old son shared: “My daily life has changed, but because of my work.
One mother of a 4-year-old boy said, "I think the thing that hurt the most was when he got his slow. A mother of a 15-year-old girl explained, "I think she's in her invited to one special needs birthday party all her life...but guess what she was the only one who couldn't get in and out of the water against. herself...It's awkward so you feel stupid and weird...like don't worry about me, I'll be here in the pool while you relax and talk.”. One mother of a 13-year-old girl said: “I can't leave her with an assistant all the time...you want to take her and include her, but sometimes it backfires...you feel like you're doomed if you do and damned if you don't… Another mother of a 15-year-old girl said, I'll feel guilty and terrible all the time, even though it's such an effort for us to take her places .” A mother of a two-year-old son expressed how difficult it is to be away.
I wanted to be the one to take care of him.” A mother of a 15-year-old daughter discussed how parents should be prepared in all aspects of life.
Coping strategies
Problem-Focused
It's hard for me to let go of control and hard to cope with the drastic change in my life before my son and now." A mother of a 4-year-old boy said: "It's still just doctor's appointment after doctor's appointment for him and me. They reported that even leaving their children in the care of medical providers was provocative. A mother of a 6-year-old son expressed her concern: “...And he can't communicate very well, so we are his voice.
A mother of a 13-year-old girl said: "Most parents don't have to think about the fact that as a parent of a girl who is non-verbal, who is now developing into a woman, she has to worry about getting shots to prevent sexually transmitted diseases, but this is my life. A mother of a 6-year-old daughter said, "Faith has helped me to feel more accepting of what life is instead of fighting it." A mother of a 15-year-old daughter said, "I probably take better care of myself now because I know she's going to need me forever."
A mother of a 2-year-old boy shared, “I seem to nurse more myself now than when I had him…
Reframing
She stated: “I think I'm doing what anyone would do in the same situation... it can happen to anyone. She's the hero, I'm not." Similarly, a mother of a 2-year-old son stated, "I think when I'm under pressure, I don't back down … it's easy. CMC parents reported that their personal acceptance helped to make caring for their CMC less difficult ... A mother of a 6-year-old son reported, “I think it's a little easier because of how happy my son is.” “I think it might be different for children who have known a different life.
This is the only life my son has ever known and...he is happy.” A mother of a 4-year-old girl said: "what your everyday attitude is to having a child with a complex medical condition, you can either feel sorry for yourself or put one foot in front of the other and make the best of it make. This." The mother of a 2-year-old son spoke candidly as she concluded her story "...I feel like he is a blessing. The purpose of this study was to examine stress and coping in parents of children with medical complexity (CMC ) This study investigated perceptions of frequency and difficulty of stressful events experienced by parents in caring for CMC.
The impact on parents of the medical complexities of caring for their children was also discussed.
Frequency and Difficulty of Parental Stressors
The study also examined the relationships between parent and child characteristics and coping strategies reported by parents. Stress and coping were operationalized with two instruments in the research portion of the study, with further depth and meaning added with the qualitative data.
Coping Strategies
Parental and Child Characteristics
Although statistical significance was not reached, associations indicated that there was a positive correlation between educational level and problem-based coping. The more advanced level of education of the parent was associated with increased reporting of problem-based coping. The parents who were younger in age and had a lower income were also more likely to use problem-based coping, but cause and effect was not established in the study.
The possibility that younger, lower-income parents have not taken care of their CMC as long as older parents may suggest time since diagnosis may lead to the development of poor coping strategies. Associations between parental characteristics such as gender, age, income, education, and marital status did not indicate which coping strategies were more effective in dealing with stressors. Interpreting this finding is difficult with such a small sample size, but previous research has shown that having a child with a chronic medical condition can affect families financially, emotionally, and physically. 10,.
78, 79 Whether this is a causal link is unknown, but the child's health may force parents to stay at home, reducing income, increasing social isolation, and making it more difficult for parents to focus on caregiving. for themselves.
Impact of caring for CMC
Resources MaCH. Children with Special Health Care Needs 2019 [updated August 2019
Quality of life and coping strategies for caregivers of children with physical and mental disabilities. A national profile of caregiver challenges among more medically complex children with special health needs. Stress and coping strategies of parents of children with physical, mental and hearing disabilities in Jordan.
Chronic grief in parents of children with a chronic illness or disability: An integrative literature review. Challenges for family carers of children with special needs for multiple, complex and ongoing care at home. Support needs and coping strategies as predictors of stress level among mothers of children with autism spectrum disorder.
Stress and coping strategies of parents of children with physical, mental and hearing disabilities in Jordan.
Vrijmoet-Wiersma CM, Egeler RM, Koopman HM, Bresters D, Norberg AL,
The Pediatric Inventory for Parents: Development of a short form in fathers of children with type 1 diabetes (T1D). Perceived stress and ways of coping among parents of children with intellectual disability in Lahore, Pakistan. Health and quality of life among the caregivers of children with disabilities: A review of literature.
8 Emotion and cognition The discussion focuses on emotional and cognitive experiences. 8.1 Anger/frustration The healthcare provider discusses feelings of anger or frustration. 12 Suggestions/needs The discussion is about the needs and suggestions of the caregiver. 12.1 Parental support Support groups, mentor/someone in a similar situation.
