Survey Data from the Menstrual Health in Adolescents with Down syndrome in the UK Study – Data Codebook

Persistent identifier

10.17037/DATA.00005282

Description

Survey data collected as part of a mixed-methods study to investigate the menstrual health of adolescents with Down syndrome in the United Kingdom. The online survey was completed by caregivers of adolescents aged 10-19 with Down syndrome, irrespective of whether they have begun menstruating. This was followed by interviews with selected participants (which are not made available to protect the participant confidentiality).

Data Codebook

The dataset contains the variables outlined below.

Variable Name Variable Label Answer Label Answer Code Variable Type
respondent Sex of child/young person     String
    Female female  
    Male male  
age How old is your child/young person with Down syndrome? Open ended   Numeric
part1ethnicity Please choose the option that best describes the ethnic group your child/young person belongs to     String
    White English/Welsh/Scottish/Northern Irish/British white  
    Irish irish  
    Gypsy or Irish Traveller gypsey  
    Any other White background other_white  
    White and Black Caribbean white_caribbean  
    White and Black African white_african  
    White and Asian white_asian  
    Any other Mixed/Multiple ethnic background other_mixed  
    Indian indian  
    Pakistani pakistani  
    Bangladeshi bangladeshi  
    Chinese chinese  
    Any other Asian background other_asian  
    African african  
    Caribbean caribbean  
    Any other Black/African/Caribbean background other_black  
    Arab arab  
    Prefer not to say prefer_not  
    Other other  
part1education Which of the following best describes the current educational setting of your child/young person with Down syndrome?     String
    Mainstream school mainstream  
    Mainstream school with special unit/facilities mainstream_unit  
    Maintained special school (funded and managed by the local authority) maintained_special  
    Non-maintained special school (independently run, often by charities or trusts) non_maintained_special  
    Section 41 school (independent special school approved by the Secretary of State as a school that can be named in an EHCP). section  
    Child is home-schooled home_schooled  
    Mainstream college mainstream_college  
    Specialist college specialist_college  
    Vocational centre vocational_centre  
    Not applicable – not currently in any formal education (skip next question) not_applicable  
    Other other  
part1education_other Current education setting - text response Open ended   String
part1school_year From September 2024 what school year is your child/young person in?     String
    Year 5 5  
    Year 6 6  
    Year 7 7  
    Year 8 8  
    Year 9 9  
    Year 10 10  
    Year 11 11  
    Year 12 12  
    Year 13 13  
    Not applicable not_applicable  
part1independence How independent is your child/young person with personal hygiene tasks like toileting, brushing teeth, showering and dressing?     String
    Completely independent no_assistance  
    Requires minimal prompting or assistance minimal_assistance  
    Requires moderate assistance moderate_assistance  
    Requires significant assistance significant_assistance  
    Requires full assistance full_assistance  
part1expressthemself Can your child/young person express their needs and wants (verbally or non-verbally)?     String
    Consistently uses words to express needs and wants words  
    Uses a combination of words, signs, and gestures to express needs and wants words_and_signs  
    Primarily relies on gestures and body language to communicate needs and wants signs  
    Has difficulty expressing needs and wants neither  
      0  
part1leisure How often does your child/young person participate in leisure activities (e.g. clubs, sports) with other people (family, friends, or peers)?     String
    Never – my child/young person does not engage in any activities with others never  
    Sometimes – my child/young person occasionally engages in activities with others sometimes  
    Often – my child/young person regularly (e.g. weekly) engages in activities with others often  
      0  
part1asd Has your child/young person with Down syndrome ever received a formal diagnosis of Autism Spectrum Disorder (ASD)?     String
    No no  
    Yes yes  
part1start_period Has your child/young person started menstruating (their periods) yet?     String
    No no  
    Yes yes  
age_menarche How old was your child/young person when they got their first period?   8 to 16 long
         
part1time_menstruating How long has your child/young person been menstruating for?     String
    Don't remember dont_remember  
    Less than 6 months under_6_mo  
    6 months – 1 year 6_mo_to_1_yr  
    1 – 2 years 1_to_2_yrs  
    2  – 5 years 2_to_5_yrs  
    More than 5 years more_than_5_yrs  
    Don’t know dont_know  
part2know_period Does your child/young person know what a period is?     String
    Yes, my child/young person has good understanding about periods e.g. they know that periods involve monthly bleeding and are a normal part of growing up for girls and women good_understanding  
    Yes, my child/young person has some understanding about periods e.g. they know that periods involve bleeding from the vagina some_understanding  
    No, my child/young person does not understand the concept of periods no_understand  
    I don’t know whether my child/young person understands the concept of periods dont_know  
part2confidence_discuss How confident do you feel in your ability to discuss menstrual biology & reproduction with your child/young person?     String
    Not at all confident not_confident  
    Slightly confident slightly_confident  
    Moderately confident moderately_confident  
    Very confident very_confident  
    Not applicable – My child/young person would not understand this topic, or I would not choose to discuss this topic with my child/young person not_applicable  
part2spoken_yet Have you or anyone else in your family spoken to your child/young person about menstruation yet?     String
      yes  
      no  
      0  
part2who_discuss Who in the family has spoken to your child/young person about menstruation? Select all that apply     String
    Female parent/guardian female_parent  
    Male parent/guardian male_parent  
    Female sibling female_sibling  
    Male sibling male_sibling  
    Other other  
part2what_discuss What did you/they discuss with your child/young person about menstruation? (Part 2) Open ended   String
part2info_school Has your child/young person received any information on menstruation at school yet? (Part 2)     String
    Yes, classes and information sent home yes_classes_home  
    Yes, classes in school only yes_classes_only  
    Yes, information sent home only yes_home_only  
    No no  
    Not applicable not_applicable  
    I don’t know dont_know  
part2inform_cover Were you informed about what would be covered in school before any lessons?     String
    Yes yes  
    No no  
      0  
part2info_relevant Do you think the information covered in school /sent home from school so far was relevant and appropriate for your child/young person?     String
    Yes yes  
    No no  
    Don't Know (I didn't see the information they covered in class) dont_know  
part2info_support_start Have you sought any information or support to prepare you and/or your child/young person for when they start their periods?     String
    Yes yes  
    No no  
part2info_sought_self What information or assistance have you sought to help you support your child/young person’s menstrual health? Select all that apply.     String
    Information about hormonal changes throughout the menstrual cycle hormonal_changes  
    Information on hormonal medication/contraceptives (to manage periods) hormonal_medication  
    Information on contraceptives (as contraception) contraception  
    Information on different menstrual products products  
    Information on managing menstrual pain pain_management  
    Strategies to support your child/young person’s (independent) management of their periods support_self_efficacy  
    Information to inform other settings involved in providing personal care about relevant specific cultural or religious aspects of menstruation cultural_info  
    None of the above none  
    Other other  
part2info_sought_self_other Please specify (What information or assistance have you sought to help you support your child/young person’s menstrual health?) Open ended   String
part2info_sought_child What information or support (specifically designed for people with learning disabilities) have you sought that explains menstruation so your child/young person can understand it? Select all that apply.     String
    Materials / resources to share with your child/young person about periods periods  
    Materials / resources to share with your child/young person about the menstrual cycle menstrual_cycle  
    Information on hormonal medication/contraceptives (to manage periods) hormonal_medication  
    Information on contraceptives (as contraception) contraception  
    Information on different menstrual products products  
    Information on managing menstrual pain pain_management  
    Information relevant to specific cultural or religious aspects of menstruation cultural_info  
    None of the above none  
    Other other  
part2info_sought_child_other Please specify (What information or support (specifically designed for people with learning disabilities) have you sought that explains menstruation so your child/young person can understand it?) Open ended   String
part2info_source Where did you go for this information or support? Select all that apply.     String
    Online resources (websites, blogs, social media) online  
    Books or pamphlets books  
    Medical professionals (doctor, nurse) medical  
    Teachers teachers  
    Family or friends family  
    Other parents/caregivers with a child/young person with Down syndrome other_parents  
    National charity / organisation supporting individuals with learning disabilities national_charity  
    Local Down syndrome support groups local_group  
    Other other  
part2info_source_other Please specify (Where did you go for this information or support?) Open ended   Numeric
part2access_all Have you been able to access/find all the information or support you have sought?     String
    Yes yes  
    No no  
part2materials_specific_not_yet Were any of the materials/resources you found intended specifically for a person with a learning disability?     String
    Yes yes  
    No no  
    Not applicable (didn’t look for this type of resource) not_applicable  
part2resources Could you please share details of any written resources (e.g.leaflets, books, websites) you have found particularly helpful so we can review them? (optional) Open ended   String
part2future_support What would you like information or support with going forwards? Select all that apply.     String
    Materials / resources to share with your child/young person about periods periods  
    Materials / resources to share with your child/young person about the menstrual cycle menstrual_cycle  
    Finding resources specifically designed for / accessible to young people with learning disabilities tailored_resources  
    Information about hormonal changes throughout the menstrual cycle hormonal_changes  
    Information on hormonal medication/contraceptives (to manage periods) hormonal_medication  
    Information on contraceptives (as contraception) contraception  
    Information on different menstrual products products  
    Information on managing menstrual pain pain_management  
    Strategies to support your child/young person’s (independent) management of their periods support_self_efficacy  
    Information to inform other settings involved in providing personal care about relevant specific cultural or religious aspects of menstruation cultural_info  
    None of the above - I do not need any information or support none  
    Other other  
part22confident_support How confident do you feel in your ability to practically support your child/young person when they start menstruating (e.g., keeping clean, selecting and using materials)? Select one.      String
    Not at all confident  not_confident  
    Slightly confident  slightly_confident  
    Moderately confident  moderately_confident  
    Very confident  very_confident  
part22confident_cope How confident do you feel in your child/young person’s ability to cope with menstruation? Select one.      String
    I have no concerns  no_concern  
    I have some general concerns, but their learning disability is not a major focus  some_gen_concern  
    I have some concerns about my child/young person’s ability to handle menstruation  some_concern_handle  
    I have significant concerns about my child/young person’s ability to handle menstruation  significant_concern  
    I am unsure how my child/young person will handle menstruation  unsure  
part22worried_manage How worried are you about how you and your child/young person will manage their menstruation? Select one.      String
    Not at all worried not_worried  
    Slightly worried  slightly_worried  
    Moderately worried  moderately_worried  
    Very worried  very_worried  
part22worry_aspect Which aspects of menstruation are you worried about? Select all that apply.  Open ended   String
    How they will cope (emotionally) with menstrual blood  cope_emotionally  
    How we/they will manage their periods (e.g. using menstrual products, hygiene)  manage_period  
    Dealing with their menstrual blood  deal_blood  
    How their hormones will affect their mood or behaviour  hormones_affect  
    Whether they will be socially appropriate during their menstruation  socially_appropriate  
    Whether their sleep will be interrupted  sleep_interrupt  
    The level of menstrual-related pain or discomfort they will experience  pain  
    How they will communicate any menstrual-related pain or discomfort  communicate_pain  
    Whether you as a family can prepare them properly prepare  
    Whether they will be properly supported at school/college support_school  
    Whether their period will affect their participation in regular activities/clubs affect_activities  
    Whether their period will affect their participation in school trips/residentials affect_school_trips  
    other Other  
part_twoknow_what_period Does your child/young person know what a period is? Select one.     String
    Yes, my child/young person has good understanding about periods e.g. that periods involve monthly bleeding and are a normal part of growing up for girls and women good_understand  
    Yes, my child/young person has some understanding about periods e.g. that they involve bleeding from the vagina some_understand  
    No, my child/young person does not understand the concept of periods  not_understand  
    I don’t know whether my child/young person understands the concept of periods  dont_know  
part_twoconfident_discuss How confident did you feel in your ability to discuss periods with your child/young person before they started menstruating? Select one. NB this is about whether you felt able to talk to your child/young person about this topic, not about whether you spoke to your child/young person about periods.      String
    Not at all confident  not_confident  
    Slightly confident  slightly_confident  
    Moderately confident moderately_confident  
    Very confident very_confident  
    Not applicable – My child/young person would not have understood this topic not_applicable  
part_twospeak_before Did you or anyone else in your family speak to your child/young person about menstruation before they started their periods?     String
    Yes yes  
    No no  
part_twowho_spoke Who in the family spoke to your child/young person about menstruation? Select all that apply     String
    Female parent/guardian  female_parent  
    Male parent/guardian  male_parent  
    Female sibling  female_sibling  
    Male sibling  male_sibling  
    Other other  
part_twowho_spoke_other Please specify (who spoke to your child/young person about menstruation) Open ended   String
part_twoinfo_school_before Did your child/young person receive any information on menstruation at school before they started menstruating?     String
    Yes, classes and information sent home  yes_classes_home  
    Yes, classes in school only  yes_classes_only  
    Yes, information sent home only yes_home_only  
    No no  
    Not applicable not_applicable  
    I don’t know dont_know  
part_twoinform_cover_before Were you informed about what would be covered in school before any lessons?      String
    Yes yes  
    No no  
part_twoinfo_school_relevant Do you think the information covered in school /sent home from school was relevant and appropriate for your child/young person?      String
    Yes yes  
    No no  
    I don’t know (I didn’t see the information they covered in class) dont_know  
part_twoseek_info Did you seek any information or support to help you prepare before your child/young person started their period? Open ended   String
    Yes yes  
    No no  
part_twoinfo_seek What information or assistance did you seek to help you support your child/young person’s menstrual health? Select all that apply.      String
    Information about hormonal changes throughout the menstrual cycle  hormonal_changes  
    Information on hormonal medication/contraceptives (to manage periods)  hormonal_meds  
    Information on contraceptives (as contraception)  contraceptives  
    Information on different menstrual products  mens_products  
    Information on managing menstrual pain  manage_pain  
    Strategies to support your child/young person’s (independent) management of their periods  support_periods  
    Information to inform other settings involved in providing personal care about relevant specific cultural or religious aspects of menstruation other_settings  
    None of the above  none  
    Other other  
part_twoinfo_explain What information or support (specifically designed for people with learning disabilities) did you seek that explained menstruation so your child/young person could understand it? Select all that apply.      String
    Materials / resources to share with your child/young person about periods  periods  
    Materials / resources to share with your child/young person about the menstrual cycle  cycle  
    Information on hormonal medication/contraceptives (to manage periods)  info_hormone_meds  
    Information on contraceptives (as contraception)  info_contraceptives  
    Information on different menstrual products  info_mens_products  
    Information on managing menstrual pain  info_manage_pain  
    Information relevant to specific cultural or religious aspects of menstruation cultural_religious  
    None of the above  none  
    Other other  
part_twowhere_info Where did you go for this information or support? Select all that apply.     String
    Online resources (websites, blogs, social media)  online  
    Books or pamphlets  books_pamphlets  
    Medical professionals (doctor, nurse)  med_prof  
    Teachers  teachers  
    Family or friends  family_friends  
    Other parents/caregivers with a child/young person with Down syndrome  parents_caregivers  
    National charity / organisation supporting individuals with learning disabilities  charity  
    Local Down syndrome support groups  support_groups  
    Other other  
part_twoaccess_info Were you able to access/find all the information or support you sought? Select one.      String
    Yes yes  
    No no  
part_twomaterials_specific Were any of the materials/resources you found intended specifically for a person with a learning disability? Select one.      String
    Yes yes  
    No no  
    Not applicable  (didn’t look for this type of resources) not_applicable  
part_twoinfo_going_forwards What would you like information or support with going forwards? Select all that apply.      String
    Materials / resources to share with your child/young person about periods  materials_period  
    Materials / resources to share with your child/young person about the menstrual cycle  materials_cycle  
    Finding resources specifically designed for / accessible to young people with learning disabilities  specific_design_disability  
    Information about hormonal changes throughout the menstrual cycle  info_hormone_changes  
    Information on hormonal medication/contraceptives (to manage periods)  info_hormone_meds  
    Information on contraceptives (as contraception)  info_contraceptives  
    Information on different menstrual products  info_mens_products  
    Information on managing menstrual pain  info_pain  
    Strategies to support your child/young person’s (independent) management of their periods  support_periods  
    Information to inform other settings involved in providing personal care about relevant specific cultural or religious aspects of menstruation info_cultural  
    None of the above - I do not need any information or support  none  
    Other other  
note_22before_worried_manage Before your child/young person started menstruating, how worried were you about how you and your child/young person would manage their menstruation? Select one.      String
    Not at all worried not_worried  
    Slightly worried slightly_worried  
    Moderately worried moderately_worried  
    Very worried very_worried  
note_22before_worried_menstruati Before your child/young person started menstruating, which aspects of menstruation were you worried about? Select all that apply.      String
    How they would cope (emotionally) with menstrual blood  cope  
    How we/they would manage their periods (e.g. using menstrual products, hygiene) manage  
    Dealing with their menstrual blood  deal  
    How their hormones would affect their mood or behaviour  hormones_affect  
    Whether their sleep would be interrupted  sleep_interrupt  
    Whether they would be socially appropriate during their menstruation  socially_appropriate  
    The level of menstrual-related pain or discomfort they would experience  pain  
    How they would communicate any menstrual-related pain or discomfort  communicate_pain  
    Whether you as a family could prepare them properly  family_prepare  
    Whether they would be properly supported at school/college  support_school  
    Whether their period would affect their participation in regular activities/clubs  affect_activities  
    Whether their period would affect their participation in school trips/residentials  affect_school_trips  
    None of the above none  
    Other other  
var84 Please specify (Before your child/young person started menstruating, which aspects of menstruation were you worried about) Open ended   String
note_22cope_first_period How did your child/young person cope when they got their first period? Select one.     String
    Seemed happy and excited  happy  
    Seemed surprised or confused  surprised  
    Seemed worried, anxious  worried  
    Seemed scared / distressed  scared  
    Didn’t react much / took it in their stride  no_reaction  
    Other other  
note_22cope_first_period_other Please specify (How did your child/young person cope when they got their first period?) Open ended   String
note_22current_concern Which aspects of menstruation currently cause you worry or concern? Select all that apply.     String
    How they cope (emotionally) with menstrual blood  cope  
    How you/they manage their periods (e.g. using menstrual products, hygiene)  manage  
    Dealing with their menstrual blood  deal  
    Heavy or irregular periods  heavy_periods  
    How their hormones affect their mood or behaviour  hormones_affect  
    Whether their sleep will be interrupted  sleep_interrupt  
    Their social appropriateness during menstruation  socially_appropriate  
    The level of menstrual-related pain or discomfort they experience  pain  
    Communication about and management of menstrual-related pain or discomfort  communicate_pain  
    Support at school / college  support_school  
    Their ability to participate in regular activities/clubs  participate_activities  
    Their ability to participate in school trips/residentials  participate_school_trips  
    None of the above  none  
    Other other  
part3take_hormonal_medication Does your child take hormonal medication (e.g. contraceptive pills, patches, implants) to help manage their periods?     String
    Yes yes  
    No no  
part3natural_period How often does your child/young person typically get their period? Select one.      String
    Mostly regular (approximately monthly, with a few days varying)  regular  
    Irregular (periods come at varying intervals with significant gaps between them)  irregular  
    I don’t know dont_know  
part3frequency_bleeding How often does your child/young person experience bleeding (periods)?     String
    They have planned breaks for bleeds (periods)  planned  
    They get unpredictable or irregular bleeding, or spotting  unpredictable  
    Their periods are completely suppressed (select if your child/young person never has any bleeding) suppressed  
part3period_last How long does your child/young person's period typically last? Select one.      String
    1-2 days  1_to_2_ds  
    3-5 days  3_to_5_ds  
    6-7 days  6_to_7_ds  
    7 days or more  7_ds_or_more  
    It varies  varies  
    I don’t know  dont know  
part3heavy_bleeding Does your child/young person currently experience any bleeding you would consider heavy or prolonged? E.g., possible signs of this might be they have to change their pad or tampon less than every 1 to 2 hours because it is soaked, bleed longer than 7 days, or they pass large clots. Select one.      String
    Yes yes  
    No no  
part3physical_symptoms Does your child/young person currently experience any of the following physical symptoms around their period? Select all that apply.      String
    Cramps  cramps  
    Bloating  bloating  
    Fatigue  fatigue  
    Headaches  headaches  
    Irregular or missed periods  irregular_missed_periods  
    Bowel symptoms  bowel_symptoms  
    None of the above  none  
    Other other  
part3endometriosis Does your child experience endometriosis?       
    Yes (diagnosed)  yes_diagnosed  
    Yes (undiagnosed)  yes_undiagnosed  
    No  no  
    I don’t know  dont_know  
part3behaviour_changes Does your child/young person currently experience any of the following changes in behaviour or mood around their period? Select all that apply.      String
    Increased anxiety  increased_anxiety  
    Increased irritability  increasedirritability  
    Mood swings or emotional outbursts  mood_swings  
    Increased challenging behaviour (more than usual/manageable ups and downs)  increased_challenging_behaviour  
    Difficulties sleeping  difficulties_sleeping  
    Changes in appetite  changes_appetite  
    Difficulty concentrating  difficulty_concentrating  
    Withdrawal from social activities  withdrawal_activities  
    None of the above  none  
    Other other  
note_32tell_pain Can your child/young person use words or gestures to tell you when they are uncomfortable or in pain? Select one.      String
    Yes yes  
    No no  
note_32experience_pain Does your child/young person typically experience any pain during their period? Select one.      String
    Always always  
    Sometimes sometimes  
    Never never  
note_32describe_pain How would you describe the ways your child/young person experiences pain during their period? Select all that apply.     String
    Crying or fussiness  cry  
    Withdrawing from activities  withdraw_activities  
    Difficulty sleeping  difficult_sleeping  
    Changes in appetite  changes_appetite  
    Verbal complaints of pain  verbal_complaints  
    Other other  
note_32describe_pain_other Please specify (How would you describe the ways your child/young person experiences pain during their period) Open ended   String
note_32interfere_daily_activitie Does the pain or discomfort they experience interfere with their daily activities? Select one.      String
    Always always  
    Sometimes sometimes  
    Never never  
note_32affect_daily_activities How are daily activities affected by pain or discomfort? Select all that apply.      String
    Difficulty completing self-care tasks  difficult_tasks  
    Decreased participation in school or social activities  decreased_participation  
    Mood changes (irritability, frustration)  mood_changes  
    Other other  
note_32affect_daily_activities_o Please specify (How are daily activities affected by pain or discomfort) Open ended   String
note_32strategies What strategies do you use to help manage your child/young person's menstrual pain? Select all that apply.      String
    Hormonal medication e.g. the pill or minipill, Depo-provera injection, hormonal patches, implant  hormonal_meds  
    Over-the-counter pain medication e.g. ibuprofen  OTC_pain_meds  
    Prescription-only pain medication e.g. naproxen and mefenamic acid (not codeine)  prescription_pain_meds  
    Codeine  codeine  
    Prescription-only medication to manage heavy flow e.g. tranexamic acid  prescription_flow_meds  
    Heating pad or warm compress  heating  
    Gentle massage  massage  
    Relaxation techniques e.g. deep breathing relaxation  
    Other other  
note_32strategies_other Please specify (What strategies do you use to help manage your child/young person's menstrual pain) Open ended   String
note_32effective_pain How effective are these strategies in managing your child/young person's pain? Select one.      String
    Not very effective  no  
    Slightly effective  slightly  
    Moderately effective  moderately  
    Very effective very  
note_drspeak_doctor Have you or another family member ever spoken to your child/young person’s doctor about any concerns about your child/young person’s menstruation e.g. heavy, painful or irregular periods? Select one.      String
    Yes yes  
    No no  
note_drhealth_professional_meds Did your healthcare professional suggest medication to manage these symptoms? Select all that apply.     String
    Yes, hormonal medication  yes_hormone  
    Yes, other medication  yes_other  
    No  no  
note_drsatisfaction_needs_met How satisfied were you that your child/young person’s menstruation needs were met by your healthcare professional? Select one.      String
    Not at all satisfied  no  
    Slightly satisfied  slightly  
    Moderately satisfied  moderately  
    Very satisfied  very  
note_33experience_incontinence Does your child/young person experience urinary or faecal incontinence in general (i.e. not related to their periods)? Select all that apply.     String
    Yes, urinary incontinence  yes_urinary  
    Yes, faecal incontinence  yes_faecal  
    Yes, both urinary and faecal incontinence  yes_both  
    No  no  
note_33pads_control Does your child/young person use incontinence products for bladder or bowel control? Select one.     String
      no  
      yes  
note_33pads_type What incontinence products do they use?     String
    Incontinence underwear incontinence_underwear  
    Single pads single_pads  
    Care slips care_slips  
    Bed pads bed_pads  
note_33tell_period Does your child/young person tell you/someone when they get their period? Select one.     String
    Yes  yes  
    No  no  
    Sometimes  sometimes  
    Not applicable – periods are completely suppressed with no bleeding  not_applicable_suppressed  
    Not applicable – periods are completely managed for my child/young person  not_applicable_managed  
note_33current_menstrual_product What menstrual products does your child/young person currently use to manage their menstruation? Please select all that apply.      String
    Pads pads  
    Tampons tampons  
    Period underwear period_underwear  
    Period swimwear period_swimwear  
    Menstrual cup menstrual_cup  
    None of the above  none  
    Other other  
var124 Please specify (What menstrual products does your child/young person currently use to manage their menstruation) Open ended   String
note_33current_meds Does your child/young person currently use any medication to manage their periods? Select all that apply.     String
    Hormonal medication (“the pill” i.e. combined pill or minipill)  hormonal_med  
    Hormonal injection e.g. Depo-Provera hormonal_inj  
    Hormonal implant hormonal_implant  
    None of the above  none  
    Other other  
note_33current_meds_other Please specify (Does your child/young person currently use any medication to manage their periods) Open ended   String
note_33decision_products Who made the decision to manage menstruation using these products / medications? Select one.     String
    Parent only  parent  
    Child/young person only  child  
    Parent and child/young person together  parent_child  
    Other other  
note_33decision_products_other Please specify (Who made the decision to manage menstruation using these products / medications) Open ended   String
note_33free_products Has your child ever obtained free menstrual products at their school? Select one.      String
    Yes  yes  
    No  no  
    I don’t know  dont_know  
    Not applicable  not_applicable  
      0  
note_33difficult_afford The cost of period products can sometimes be a burden. Have you ever faced difficulty affording period products for your child/young person?      String
    Yes yes  
    No no  
    Not applicable not_applicable  
note_33type_hormonal_medication Do you know which type of hormonal medication your child/young person is taking? Select one.     String
    Combination pill  combine_pill  
    Minipill  minipill  
    Don’t know  dont_know  
note_33take_pill How do they take their pill? Select one.     String
    21/7 regimen – pill free break after 21 days  21_7  
    Run several packets together with a break periodically e.g. every 3 months  together_periodic_break  
    Take continuously  continuous  
    Other other  
note_33take_pill_other Please specify (how they take their pill) Open ended   Numeric
note_33support What support do you provide to help your child/young person take their hormonal medication (i.e. “the pill”)? Select one.     String
    None, my child/young person is completely independent in taking their hormonal medication  none  
    I provide indirect support e.g. reminders  indirect  
    I give my child/young person their hormonal medication  give_meds  
note_33challenges_take_meds Does your child/young person experience any challenges taking their hormonal medication? Select all that apply     String
    Difficulties remembering to take the medication  difficult_remember  
    Difficulties swallowing the medication  difficult_swallow  
    Feeling unwell after taking the medication  unwell  
    Unpredictable changes in mood or behaviour after taking the medication  changes_mood_behaviour  
    Refusal to take the medication  refusal  
    No challenges  no  
    Other challenges, please specify other  
note_33challenges_take_meds_othe Other challenges (that child/young person experiences taking their hormonal medication) Open ended   String
note_33hormones_reduce_suppress_ Does the hormonal contraception your child/young person is taking (hormonal medication (the pill), injection, implant) to manage their periods reduce or suppress their periods? Select one.     String
    Yes, the medication completely stops my child/young person's periods yes_stop  
    Yes, the medication makes my child/young person's periods less frequent or lighter  yes_less_frequent  
    No, the medication does not affect my child/young person's periods  no  
    I don't know if the medication affects my child/young person's periods  dont_know  
    Other other  
var140 Please specify (Does the hormonal contraception your child/young person is taking (hormonal medication (the pill), injection, implant) to manage their periods reduce or suppress their periods) Open ended   Numeric
note_33satisfied_pain How satisfied are you with the hormonal medication for managing pain during your child/young person’s menstruation? Select one.      String
    Not at all satisfied  not_satisfied  
    Slightly satisfied  slightly_satisfied  
    Moderately satisfied  moderately_satisfied  
    Very satisfied  very_satisfied  
    Not applicable – e.g. menstruation is completely suppressed  not_applicable  
note_33satisfied_regulate How satisfied are you with the hormonal medication’s ability to regulate your child/young person’s periods? Select one.     String
    Not at all satisfied  not_satisfied  
    Slightly satisfied  slightly_satisfied  
    Moderately satisfied  moderately_satisfied  
    Very satisfied  very_satisfied  
    Not applicable – e.g. my child/young person has never experienced irregular periods not_applicable  
note_33satisfied_reduce_bleeding How satisfied are you with the hormonal medication’s ability to reduce the heaviness of bleeding? Select one.     String
    Not at all satisfied  not_satisfied  
    Slightly satisfied  slightly_satisfied  
    Moderately satisfied  moderately_satisfied  
    Very satisfied  very_satisfied  
    Not applicable – e.g. my child/young person has never experienced heavy bleeding not_applicable  
note_33take_hormone Has your child/young person ever taken the pill or hormonal injections? Select one.      String
    No no  
    Yes yes  
    Prefer not to say prefer_not_to_say  
note_use_of_menstrual_productsas Can your child/young person ask for help when they are experiencing difficulties related to their period? Select one.     String
    Yes yes  
    No no  
note_use_of_menstrual_productsco How comfortable is your child/young person using menstrual products? Please select one. NB this question is about how your child/young person feels about using menstrual products, not about whether they can use them independently.      String
    Not very comfortable  not_comfortable  
    Slightly comfortable  slightly_comfortable  
    Moderately comfortable  moderately_comfortable  
note_use_of_menstrual_productssu What support do you provide to help your child/young person use menstrual products at home? NB this question is not about hygiene. Select one.     String
    None, my child/young person is completely independent in selecting, using and changing/disposing of menstrual products  none  
    I provide indirect support e.g. visual aids, routines, visual or verbal reminders  indirect_support  
    I partially assist my child/young person with selecting, using, changing and disposing of menstrual products  partial_assist  
    I fully assist my child/young person with selecting, using, changing and disposing of menstrual products  full_assist  
var149 What support do others provide to help your child/young person use menstrual products at school/college? NB this question is not about hygiene. Select one.     String
    None, my child/young person is completely independent in selecting, using and changing/disposing of menstrual products  none  
    They provide indirect support e.g. visual aids, routines, visual or verbal reminders  indirect_support  
    They partially assist my child/young person with selecting, using, changing and disposing of menstrual products  partial_assist  
    They fully assist my child/young person with selecting, using changing and disposing of menstrual products  full_assist  
note_use_of_menstrual_productsex How often does your child/young person experience challenges related to leakage of blood even when wearing menstrual products? Select one.     String
    Never  never  
    Some of the time some_time  
    Most of the time most_time  
    All of the time all_time  
var151 What support do you provide to help your child/young person maintain their personal hygiene during their period at home? Select one.     String
    My child/young person does not require any specific support with their menstrual hygiene not_require  
    I provide indirect support, e.g. reminders and guidance, but they manage most aspects independently indirect_support  
    I partially assist my child/young person to manage their menstrual hygiene partial_assist  
    I fully assist my child/young person to manage their menstrual hygiene full_assist  
    My child/young person does not require any specific support with their menstrual hygiene not_require  
var152 What support do you provide to help your child/young person maintain their personal hygiene during their period at school/college? Select one.     String
    My child/young person does not require any specific support with their menstrual hygiene not_require  
    They provide indirect support, e.g. reminders and guidance, but they manage most aspects independently indirect_support  
    They partially assist my child/young person to manage their menstrual hygiene partial_assist  
    They fully assist my child/young person to manage their menstrual hygiene full_assist  
note_tracking_periodsapp_track Do you or your child/young person use (or have ever used) an app to track their menstrual cycle? Select one.     String
    Yes yes  
    No no  
      0  
note_tracking_periodsapp_use Which app(s) do they use/have they used? Open ended   String
note_tracking_periodssupport_app How much support do you provide in using this app? Select all that apply.      String
    None, my child/young person tracks their periods completely independent  none  
    I provide indirect support e.g. reminder when period starts  indirect_support  
    I use the app with my child/young person  use_with_child  
    I use the app myself  use_myself  
    We/they no longer use an app  no_longer_use  
note_34express_embarrassed Does your child/young person ever express feeling embarrassed or ashamed about their period? Select one.     String
    Never  never  
    Some of the time  some_time  
    Most of the time  most_time  
    All of the time  all_time  
note_34confident_currently_manag How confident does your child/young person currently feel managing their period in different situations (e.g., school/college, social activities)? Select one     String
    Not at all confident  not_confident  
    Slightly confident  slightly_confident  
    Moderately confident  moderately_confident  
    Very confident very_confident  
    Not applicable – child/young person is unaware of need to manage periods  not_applicable  
note_34stop_daily_activities How often does their period stop them from participating in daily activities? (e.g., social clubs, school/college). Select one.      String
    Never  never  
    Some of the time  some_time  
    Most of the time  most_time  
    All of the time  all_time  
note_34stop_trips How often has your child/young person’s period stopped them from participating in trips? (e.g., day trips, residential stays, holidays). Select one.      String
    Never  never  
    Once or twice  once_twice  
    Several times  several_times  
    Many times  many_times  
note_34wellbeing_impactphysical_ To what extent do your child/young person’s periods cause the following changes to their well-being? Physical discomfort (e.g. increased pain, fatigue, bloating, difficulty sleeping, changes in appetite)     String
    Not at all not_at_all  
    Mild mild  
    Moderate moderate  
    Severe severe  
note_34wellbeing_impactemotional To what extent do your child/young person’s periods cause the following changes to their well-being? Emotional changes (e.g. irritability, frustration, anxiety, mood swings)     String
    Not at all not_at_all  
    Mild mild  
    Moderate moderate  
    Severe severe  
note_34wellbeing_impactbehaviora To what extent do your child/young person’s periods cause the following changes to their well-being? Behavioural changes (e.g. changes in self-care routines, difficulty completing tasks, increased need for reassurance, social withdrawal)     String
    Not at all not_at_all  
    Mild mild  
    Moderate moderate  
    Severe severe  
note_35confident_current_support How confident do you feel currently in your ability to practically support your child’s menstruation (e.g., taking the pill, keeping clean, using materials)? Select one.     String
    not_confident Not at all confident   
    slightly_confident Slightly confident   
    moderately_confident Moderately confident   
    very_confident Very confident  
note_35anxious I feel anxious or worried about managing my child's needs     String
    never Never   
    some_time Some of the time   
    most_time Most of the time   
    all_time All of the time   
note_35frustrated I feel frustrated with the challenges of their menstruation     String
    never Never   
    some_time Some of the time   
    most_time Most of the time   
    all_time All of the time   
note_35overwhelmed I feel overwhelmed by the management of their periods     String
    never Never   
    some_time Some of the time   
    most_time Most of the time   
    all_time All of the time   
ethnicity Ethnicity category     Numeric
    white 1  
    mixed 2  
    asian 3  
    prefer not to say 4  
    arab 5  
disability_level Composite variable reflecting level of support needs as per definitions in manuscript     Numeric
    Low support needs (low/no assistance with personal care) 0  
    high support needs (moderate/high assistance with personal care, and/or ASD diagnosis) 1