Needs Assessment in Parents of Children Affected by Cancer: A Qualitative Perspective
Abstract
:1. Introduction
Areas of Need and the Most Significant Issues for Parents of Children with Cancer
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- How does childhood cancer affect the parents of sick children?
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- In what areas do problems manifest most?
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- How do parents deal with such problems?
2. Materials and Methods
2.1. Study Population
2.2. Study Design and Data Collection
2.3. Data Analyses
3. Results
3.1. Sample Characteristics: Sociodemographic and Clinical Variables
3.2. Themes
3.2.1. Theme 1: Informal Social Support
“I don’t know what I want to do, I just want to spend as much time as possible with my children… If I didn’t have my children I would live alone, I wouldn’t need to be with my wife…”(Father, Participant 6)
“My partner does not listen to me much and rather discourages me. I make the decisions because he is very indecisive. He doesn’t do anything in the house when I’m with the girl. If I’m here for five days, he won’t sweep for five days”(Mother, Participant 10)
“I have friends who’ve been absent since my daughter got sick”(Mother, Participant 12)
“I lost many friends because I locked myself in and didn’t go out”(Mother, Participant 13)
“The neighbors keep asking about my daughter and that doesn’t support me. They do not understand the problem or the seriousness of the issue”(Mother, Participant 10)
3.2.2. Theme 2: Coping
“Seeing how she suffers every day and not being able to do anything…… I don’t like to live with uncertainty. I am overwhelmed by the feeling of not knowing and suffocating. I feel helpless in the face of what is happening to my daughter”(Mother, Participant 20)
“It makes me feel impotent and angry that my daughter can’t move. She still depends on her sister to help her…”(Father, Participant 3)
“The situation drags you along and doesn’t let me decide how to deal with it. I’m afraid I was wrong…”(Father, Participant 6)
“I am the support in my house. My children and my husband turn to me. Since my daughter became sick, I make all the decisions”(Mother, Participant 14)
“When you think about the future. Puff…, that’s the worst time of the day… There are days when you think all the time that you can die… I never think about anything positive”(Mother, Participant 20)
3.2.3. Theme 3: Fears and Concerns
“The main thing is to heal and not have any sequelae”(Father, Participant 9)
“… a possible relapse worries me very much … the repercussions that chemotherapy will have on his health in the future…”(Mother, Participant 11)
“I want my daughter to be cured and to be happy…”(Mother, Participant 7)
“I am worried about my sick daughter, my wife, and my other daughter because she is lonely and struggling to cope…”(Father, Participant 17)
“…that either of us could be out of a job”(Mother, 11)
“In the workplace I am afraid of the economic uncertainty and that the company may close”(Father, Participant 3)
“I would trade the time I took from my son (and my wife and family) for my job. I let something very valuable go. My son’s illness helped me change the “chip” and give importance to some things rather than others”(Father, Participant 2)
3.2.4. Theme 4: Stressors/Imbalances
“I feel a lot of impotence, anger, discomfort and indignation. Whatever I do, I don’t see any light. Whatever you do, it is very difficult to disconnect at all. My son’s illness is always on my mind… I am afraid of being wrong…”(Father, Participant 6)
“When she had the first lumbar puncture, I was in the room. Later I couldn’t bear it. When they prick her, I sometimes grab her because I suffer, I get tachycardia and can’t sleep; it’s all the result of seeing her screaming and crying”(Mother, Participant 7)
“Sometimes I had to prepare food at home for the rest of the family, then go to the hospital … I couldn’t do anything else”(Mother, Participant 1)
“There are days I get stressed, including double dates with doctors, car trips, after-school classes…”(Mother, Participant 4)
3.2.5. Theme 5: Health Problems in Parents
“…the mornings are especially bad, my stomach hurts and I feel nauseous, until I get up and start the day”(Mother, Participant 5)
“You live with fear, you’re not the same person as before… Everything is fear…”(Mother, Participant 5)
“…If I don’t take the pills, I’m so tired. I can’t stand up…”(Mother, Participant 20)
“I have very low self-esteem and I don’t love myself very much. It’s like I have absorbed energy. I don’t feel like talking to anyone. It’s like I don’t have a life or motivation. I don’t laugh much. On the days I feel more stressed for my child, I am overwhelmed, feel exhausted, and have breathing difficulties. For the last year, I have had discomfort in both eyes. I dry them, especially at night. I think it is because I think too much … Sometimes I get nauseous without knowing why and I get migraines. I have to take anti-inflammatory drugs every day and they relieve the symptoms. This happens every two or three days… I also drink a lot of caffeine and smoke. I find myself physically and mentally weaker than 2 or 3 years ago…”(Father, Participant 6)
3.2.6. Other Themes
- Work and the Family Economy
“I stopped working because of my son’s illness, because we moved to a hospital in another city. We were with my son for nine months after the first transplant. Since then, I haven’t been able to work”(Mother, Participant 12)
“I have many financial and work problems; I don’t have the job I want, and I get paid very badly. My wife and I quit our jobs because we’ve been with the girl constantly for over two years, and we’re both unemployed”(Father, Participant 3)
- 2.
- Education of Children
“She didn’t go to school for three years and attended little more than a month during the fourth year”(Father, Participant 3)
“He doesn’t know how to relate well with other children, they are more active. In certain ways, he’s less mischievous”(Father, Participant 6)
- 3.
- Formal Support and Social Resources
“I valued the medical team a lot…. They were very reassuring”(Father, Participant 2)
“Talking to the nursing staff made me less worried than talking to the doctors”(Mother, Participant 16)
“They helped me psychologically. Now, they even call me and ask about my daughter. You feel that you’re not disoriented and adrift, and when I needed something, they helped me and gave me advice …”(Mother, Participant 4)
“Now they’ve given us the disability card to park at the hospital. Before, we had to carry my daughter in our arms from the parking lot…. every day for weeks and months”(Father, Participant 3)
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
Appendix A
Theme | Subtheme | Some Sentences |
---|---|---|
Informal social support | Source of support: spouse, friends, co-workers and neighbors | “My wife has never supported me. Whenever I had an idea she has never been with me. I don’t get enough support. I think all my life I’ve supported her emotionally more than she has supported me” (Father, Participant 17). “When I looked for support from him I didn’t get it, but because he was worried too. We were both wrong. If I was wrong and leaned on him, I would burden him more” (Mother, Participant 16). “I have had my eyes opened regarding friends. They disappoint you emotionally”(Father, Participant 6). “The truth is that I have friends who have helped me a lot. The neighbors send me strawberries, because they know that the girl likes them. In the village they put candles for her...” (Mother, Participant 7). “My classmates are like my family. My neighbor has a continuous attention with my daughters. He even makes them food if necessary, it’s like family, they accompany me a lot” (Father, Participant 8). |
Isolated and dysfunctional support | “Sometimes friends and neighbors ask too much” (Mother, Participant 14). | |
Coping | Helplessness Active coping Negative coping | “See how chemotherapy affects our daughter. You see her sick and you see her lying on the couch and she vomits. That causes me a lot of pain” (Mother, Participant 11). “I have the feeling that everything we’ve tried hasn’t worked… this whole journey seems to have been worth nothing. I could have done more” (Mother, Participant 5). “One of the most important decisions I’ve made has been whether we stayed here for treatments or went to another hospital outside of this city. It didn’t take me long to decide. I know how to act fast” (Mother, Participant 11). “I try to focus on other positive things but I can’t” (Mother, Participant 15). “Sometimes, no matter how hard I try, I can’t see things on the bright side” (Father, Participant 9). |
Fears and worries | Sequelae and relapse Family stability Economic and work problems | “My main fear is that my daughter will relapse” (Mother, Participant 19). “I’m very concerned about how the child develops, or a possible relapse” (Father, Participant 9). “I worry about my son’s future because sometimes I see him as an insecure person. I’m worried about how he’s going to face things, although sometimes parents see children more helpless than they are” (Mother, Participant 1). “I am concerned about the stability of the family… The psychological state of my daughter causes discomfort in the family” (Mother, Participant 4). “May my husband not lack a job, even if he is not paid well, or on time” (Mother, Participant 12). “I’m very worried that either of us will be out of work and we won’t be able to care for our children” (Mother, Participant 11). |
Stressors/imbalances | Disease claims (emotional effects) Exposure to medical procedures Combined disease/family | “I feel impotence…I have the feeling that everything we have tried has not served…” (Mother, Participant 5). “When they give him a test, I get very nervous, even if I try to control myself” (Father, Participant 9). “It’s stressful having to be here with my daughter, and my other daughter has to stay with my mother or my mother-in-law. I work when I can: at night, at midday, …” (Mother, Participant 11). |
Health problems in parents | Physical symptoms Psychological pattern Unhealthy routines and practices | “I feel like I can’t breathe, and it seems my heart is going to jump out of my chest. I am exhausted, have headaches, nausea, vomiting … I have no motivation to get dressed and go out” (Mother, Participant 13). “You’re always afraid; you’re always looking out for him, regardless of whether he’s better or worse” (Mother, Participant 1). “I’m in very bad health but I don’t go to the doctor or the psychologist because I don’t have time” (Mother, Participant 15). |
Other themes | Work and family economy Education of children Formal support and social resources | “Ino longer perform well at work… Sometimes I think it’s because I can’t concentrate” (Father, Participant 8). “I stopped working. I didn’t think anything of it. I sold the house so I could cope with the payments that came about because of my daughter’s illness” (Mother, Participant 20). “He is more tired and perseveres less. After half an hour, he gets a headache. It’s hard for him to pay attention and memorize things … It’s hard for him to perform at the same level as before…” (Mother, Participant 4). “Nurses put me at ease, they’re exceptional” (Mother, Participant 15). “Yes, I’ve had support from doctors and nurses, but the first ones are colder. On a professional level, they’re excellent, but they’re lacking on a human level” (Mother, Participant 16). “The Association has offered us a volunteer to accompany the girl during school hours…” (Father, Participant 3). “I attended from the Association…. if I need anything help me and advise me” (Mother, Participant 4). |
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Topics | Central Questions |
---|---|
Introduction | Interviewer presentation and study objectives |
Health (symptoms) |
|
Stressors/Imbalances |
|
Coping |
|
Work/household economy |
|
Education |
|
Informal support |
|
| |
Formal support |
|
Formal resources |
|
Fears and concerns |
|
Others |
|
Theme | Subtheme | Meaning * |
---|---|---|
Informal social support | Source of support: spouse, friends, neighbors and co-workers Isolated and dysfunctional support | Source and perception of support understood as being from the spouse, as well as from friends, neighbors and co-workers, and being satisfied with it. |
Coping | Helplessness Active coping Negative coping | Classification of the different modes of coping expressed. |
Fears and worries | Sequelae and relapse Family stability: future and happiness, the family as a whole Economic and work problems | Identification, prioritization and justification of the participants’ fears and concerns in relation to the pathology. |
Stressors/imbalances | Disease claims (emotional effects) Exposure to medical procedures Combined disease/family | Circumstances/situations related to the disease that, in general, suppose an emotional imbalance or relate to family functioning. |
Health problems in parents | Physical symptoms Psychological pattern Unhealthy routines and practices | Physical and/or psychological symptomatology and/or related aspects. |
Other themes | Work and family economy, education of children, formal support and social resources | Other manifest demands or areas of their lives that have been negatively affected. |
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Bretones Nieto, B.; Pozo Muñoz, C.; Vázquez López, M.Á. Needs Assessment in Parents of Children Affected by Cancer: A Qualitative Perspective. Children 2022, 9, 1957. https://doi.org/10.3390/children9121957
Bretones Nieto B, Pozo Muñoz C, Vázquez López MÁ. Needs Assessment in Parents of Children Affected by Cancer: A Qualitative Perspective. Children. 2022; 9(12):1957. https://doi.org/10.3390/children9121957
Chicago/Turabian StyleBretones Nieto, Blanca, Carmen Pozo Muñoz, and María Ángeles Vázquez López. 2022. "Needs Assessment in Parents of Children Affected by Cancer: A Qualitative Perspective" Children 9, no. 12: 1957. https://doi.org/10.3390/children9121957