Parents’ Reported Experiences When Having a Child with Cataract—Important Aspects of Self-Management Obtained from the Pediatric Cataract Register (PECARE)
2.1. Participants and Selection
- Sense of coherence (SOC) describes a person’s ability to cope with inner and outer stressors operationalized to comprehensibility, manageability and meaningfulness . A person with a strong SOC will view stressful stimuli as predictable, understandable (comprehensible) and as challenges that are worthy of engaging in (meaningful), as well as believing that she/he possesses or can acquire the resources to overcome stressful stimuli (manageable) . We used the short form of the SOC comprising 13-items on a 7-point Likert scale with a score range of 13–191, which has been validated for Swedish use by .
- Fatigue was explored by the Multidimensional Fatigue Inventory Scale (MFI-19) , which consists of 20 questions (one question was omitted in the present study) with five subscales: general fatigue (GF), physical fatigue (PhF), reduced activity (RA), reduced motivation (RM) and mental fatigue (MF). The MFI-19 has been validated for Swedish use by .
- Parental social support was measured by the Multidimensional scale of perceived social support (MSPSS) . Social support is composed of emotional and instrumental support, where the latter includes providing tangible help, such as child care support, transportation, household assistance and providing money or shelter . The MSPSS scale addresses the subjective assessment of social support, and is designed to evaluate perceptions from three specific sources: family, friends and significant other . It consists of 12 questions and has been validated for Swedish use by .
- The Perceived Collective Family Efficacy Scale (PFES) was used to explore self-efficacy, which is defined as the patient’s confidence in her/his ability to adequately manage the demands of her/his illness . The PFES contains 19 items assessing belief in the family’s efficacy to operate as a whole system in accomplishing tasks necessary for family functioning .
- How satisfied are you with the treatment of your child’s cataract?
- How satisfied are you with your efforts as a parent of your child with a cataract?
- Do you experience that you receive enough support from the clinic that treats your child’s cataract?
- Do you feel that you have been taken seriously by the clinic that treats your child’s cataract?
2.3. Statistics and Ethics
3.1. Findings in the Whole Group
3.2. Subgroup Analysis
3.2.1. Parents of Children Suffering from Bilateral Cataract and Co-Existing Systemic Disorders
3.2.2. Parental Gender Differences
3.2.3. Parents’ Ages and Life Situation
3.3.1. Parents’ Reported Experience Measures
3.3.2. Family Self-Efficacy
Strengths and Limitations
5. Reflections on the Findings
5.2. PREM and Being Taken Seriously
5.3. Gender Perspectives and Family Structure
5.4. Organizing Care to Support Parents
6.1. Clinical Implications
- Affirm that parents of children with cataracts are tired and that mothers experience more fatigue than fathers.
- Acknowledge that parents of children with bilateral cataracts are more fatigued than other parents.
- Identify and pay extra attention to those parents who are not living with the other parent.
6.2. Future Research Questions
Conflicts of Interest
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|PARENTS||N = 231||N||%|
|Range: 27–65, Mean: 40.39, SD: 6.41, Median: 40|
|Social status||living with other parent||201||87|
|not living with other parent||29||12.6|
|on parental leave||12||5.2|
|on sick leave||3||0.9|
|CHILDREN||N = 231||N||%|
|Age at study (years)|
|Range: 0–20, Mean: 7.6, SD: 3.89, Median: 7|
|Age at surgery (months)|
|Range: 0–100, Mean: 23.45, SD: 27.44, Median: 8|
|SOC-Sense of Coherence||25||75|
|General Fatigue GF||231||0||5–24||4||20||11||8||15|
|Physical Fatigue PhF||231||0||5–24||3||20||8||5||12|
|Reduced Activity RA||231||0||5–24||3||20||8||5||11|
|Reduced Motivation RM||231||0||5–24||3||18||7||5||9|
|Mental Fatigue MF||231||0||5–24||2||14||6||4||9|
|MSPSS Social Support|
|Satisfaction with treatment from clinic||231||0||1–100||1||100||90||75||100|
|Satisfaction with own effort||230||1||1–100||30||100||80||70||95|
|Support from clinic||230||1||1–100||1||100||85||70||100|
|Taken seriously by clinic||231||0||1–100||1||100||95||80||100|
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Gyllén, J.; Magnusson, G.; Forsberg, A. Parents’ Reported Experiences When Having a Child with Cataract—Important Aspects of Self-Management Obtained from the Pediatric Cataract Register (PECARE). Int. J. Environ. Res. Public Health 2020, 17, 6329. https://doi.org/10.3390/ijerph17176329
Gyllén J, Magnusson G, Forsberg A. Parents’ Reported Experiences When Having a Child with Cataract—Important Aspects of Self-Management Obtained from the Pediatric Cataract Register (PECARE). International Journal of Environmental Research and Public Health. 2020; 17(17):6329. https://doi.org/10.3390/ijerph17176329Chicago/Turabian Style
Gyllén, Jenny, Gunilla Magnusson, and Anna Forsberg. 2020. "Parents’ Reported Experiences When Having a Child with Cataract—Important Aspects of Self-Management Obtained from the Pediatric Cataract Register (PECARE)" International Journal of Environmental Research and Public Health 17, no. 17: 6329. https://doi.org/10.3390/ijerph17176329