Infectious Illness & Isolation

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Every question is optional. No one has to retell painful events, name a diagnosis, or choose a religion or identity to begin.

Pause or stop

Stop at any point. Nothing is sent anywhere, and nothing is shared unless the person chooses it in the sharing review.

Whose words

Record who said each thing: the person, a caregiver or surrogate, or a professional. A caregiver's needs get their own field.

Support to take part

Extra time, a quieter place, pictures, an interpreter or a trusted person can help someone say what matters. Ask what helps.

Barriers are not preferences

Cost, travel, work, housing, caring for others and digital access are written down as barriers, not as what the person wants.

Meaning, religious or not

Hope, purpose, faith, relationships and identity can be part of the conversation if the person wants. None is assumed.

• Doctor or nurse: The illness, treatment and how long precautions last.
• Infection prevention team: How visits and contact can happen safely.
• Social worker: Work, money, family and practical support.
• Community health worker: Support at home and in the community, where such roles exist.
• Chaplain or spiritual-care provider: Meaning, distress, hope and relationships, for people of any faith or none.
• Interpreter or communication specialist: Language and communication support so the person's own words come through.
• People the person chooses: Family, friends, or a community or faith contact, only if the person wants them. Never assumed safe, available or wanted.

Roles, titles and training differ by country and service. Not every role exists everywhere.

A small set of places chosen for contrast, not a ranking or a representative survey: Global, United Kingdom, India, Peru, Iran, New Zealand, Canada, Democratic Republic of the Congo, Vietnam, Zambia and South Africa. Each example states what its source establishes and what it does not. Policy on paper is not proof that a service is available.

• Global · Guidance · 2020

  WHO's September 2020 interim guidance on managing dead bodies in the context of COVID-19 said there was a lack of evidence for the common assumption that people who die of a communicable disease should be cremated.

  What others could learn: Infection-control rules after a death need not presume cremation or hasty disposal. The same guidance said a family that wishes to view the body may do so with precautions, and asked for local alternatives where touching or kissing the body is traditionally part of funerals.

  Conditions, limits and source

  Conditions that matter:

  Depends on hand hygiene supplies, personal protective equipment, trained staff, and mortuary and burial capacity. The guidance asks authorities to manage each body case by case, balancing the rights of the family, the need to investigate the cause of death and the risks of exposure to infection.

  Cannot be inferred:

  Does not show what national or local authorities required during COVID-19 or what families were actually allowed. Does not apply as written to other infections such as Ebola. Does not state what any tradition requires.

  Limits:

  Interim guidance for COVID-19 as of September 2020, marked as subject to revision; it updates a 24 March 2020 version. It sets out infection-control practice and does not report what families experienced or whether local rules followed it. Later revisions were not checked.

  Source: World Health Organization, Infection prevention and control for the safe management of a dead body in the context of COVID-19: interim guidance, 4 September 2020 (Key considerations, second bullet, printed p. 1 (PDF p. 1); family viewing of the body on printed p. 2; document WHO/2019-nCoV/IPC_DBMgmt/2020.2). Where: Global. Population: People who die of suspected or confirmed COVID-19, their families, and the people who tend to their bodies. Published 2020-09-04; retrieved 2026-10-12.

• Global · Guidance · 2017

  WHO's 2017 TB ethics guidance says voluntary or involuntary isolation is unethical if isolated people are not offered available treatment, infection control and humane living conditions, including access to communication with the outside world.

  What others could learn: For a person isolated with TB, contact with the outside world is part of humane conditions, not an extra. The same guidance says the least restrictive measure should be used, and that patients must be given the right to choose the place and person for monitoring their treatment, including community-based or video-observed options.

  Conditions, limits and source

  Conditions that matter:

  Needs effective treatment, infection control, shelter, sanitation, food, water and means of communication for people in isolation, and a pre-existing law or policy for any involuntary isolation. The guidance links high TB rates to deeper systemic issues such as poverty and lack of access to primary care, not refusal of medicines.

  Cannot be inferred:

  Does not show that any country meets these conditions. Does not set legal rules; national law governs isolation orders. Does not address COVID-19 or other infections.

  Limits:

  Ethics guidance from 2017, not an evaluation of practice. It sets conditions for isolation but does not report how often isolation meets them. This record covers one of several conditions the chapter lists. Later WHO TB guidance was not checked for changes.

  Source: World Health Organization, Ethics guidance for the implementation of the end TB strategy (Chapter 15 'Isolation and involuntary isolation', section 'When is it unethical to isolate persons with TB?', printed p. 36 (PDF p. 48); treatment-monitoring options in Chapter 8 'Supporting patients to adhere to treatment and other health care recommendations', printed p. 20 (PDF p. 32)). Where: Global. Population: People with TB, including people asked to isolate and the rare cases considered for involuntary isolation. Published 2017-03-22; retrieved 2026-10-12.

• United Kingdom · Measured outcome · 2019

  In a 2014-2016 trial at 22 clinics in England, 70% of people with TB on smartphone video-observed therapy completed at least 80% of scheduled observations in the first 2 months, versus 31% on directly observed therapy.

  What others could learn: Remote observation can fit treatment support around daily life instead of fixed visits. In this trial VOT also carried personal support: training with the observer, reminder and follow-up messages, and a way to report adverse events after each video.

  Conditions, limits and source

  Conditions that matter:

  Requires smartphones, data, good internet and cellular connections, a trained central observer team and a password-protected system. The authors think it plausible that VOT would work in high-incidence, low-income settings with good connections; the trial did not test this.

  Cannot be inferred:

  Does not show better cure or relapse outcomes. Does not show that every person prefers video to in-person contact. Not evidence for settings where people lack phones, data or a place to charge them.

  Limits:

  Measures observed doses, not cure, and could not distinguish doses not observed from doses not taken. Patients and observers were not blinded. People without access to charging a smartphone were excluded, and investigators supplied smartphones and data plans free. People with MDR TB were outside the randomized comparison. One high-income country.

  Source: The Lancet (Story A, Aldridge RW, Smith CM, et al.); PMC full text, Smartphone-enabled video-observed versus directly observed treatment for tuberculosis: a multicentre, analyst-blinded, randomised, controlled superiority trial. (Abstract, Findings; intervention components and limitations in Discussion (Lancet 2019;393(10177):1216-1224; PMC6429626)). Where: United Kingdom (England, 22 clinics). Population: 226 people aged 16 or older with active TB who were eligible for directly observed therapy; 131 (58%) had a history of homelessness, imprisonment, drug use, alcohol problems or mental health problems. Published 2019-02-21; retrieved 2026-10-12.

• India · Reported experience · 2018

  Twenty women treated for TB at one clinic in Kolkata, India, interviewed in 2016, described TB stigma mainly as isolation and avoidance from fear of contagion, gossip and verbal abuse, failed marriage prospects and family neglect.

  What others could learn: Asking who knows about the diagnosis, and who the person wants to know, can matter as much as clinical updates. Almost all participants said they had not told extended family, friends or neighbors, yet several said neighbors found out after seeing them collect medicines at the DOTS clinic.

  Conditions, limits and source

  Conditions that matter:

  The DOTS clinic sat near participants' neighborhoods, which limited privacy. Interviews needed local languages and a gender-matched interviewer in a separate room. Families were hesitant to disclose TB to prospective grooms, and younger, unmarried women tended to report more stigma around marriage.

  Cannot be inferred:

  Not representative of women with TB in India. Does not measure how common each form of stigma is. Does not show that the stigma-reduction strategies the authors suggest work.

  Limits:

  Small sample from one clinic; the authors advise caution in generalizing. Men and women who had not sought treatment were not included. Interviews took place at the clinic. The consequences of stigma, including mental health effects, are what participants described, not measured.

  Source: Annals of Global Health (Mukerji R, Turan JM); PMC full text, Exploring Manifestations of TB-Related Stigma Experienced by Women in Kolkata, India. (Abstract, Results; 'Lack of disclosure' in Results; limitations in Discussion (Ann Glob Health 2018;84(4):727-735; PMC6748300)). Where: India (Kolkata, one TB clinic). Population: Women (n=20) currently on or having completed TB treatment. Published 2018-11-05; retrieved 2026-10-12.

• Peru · Reported experience · 2023

  Adolescents treated for TB in Lima, Peru, their caregivers and nurses most often named inconvenient facility-based directly observed therapy, long treatment, adverse events and symptom resolution as barriers to completing treatment.

  What others could learn: Treatment support can be shaped around school and work. Regular DOT hours were limited to mornings and conflicted with school and work, and adolescents in all three adherence groups felt ashamed to be seen at DOT visits. The authors suggest home- or community-based DOT instead.

  Conditions, limits and source

  Conditions that matter:

  Ministry of Health guidelines at the time required daily, in-person directly observed therapy at the health center nearest home for the whole treatment. Caregiver support was the most critical facilitator; travel, relocation and bus fare were obstacles for some adolescents.

  Cannot be inferred:

  Does not show that home- or community-based DOT improves completion for adolescents. Not representative of adolescents with TB across Peru. Does not cover drug-resistant TB.

  Limits:

  The team could not contact nearly one-third of eligible adolescents lost to follow-up and did not reach thematic saturation in that group. Adolescents whose caregiver could not or would not take part were excluded. Interviews predate COVID-19 and come from one city. Several authors are affiliated with the partner organization, Socios En Salud.

  Source: BMJ Open (Chiang SS, Senador L, Altamirano E, et al.); PMC full text, Adolescent, caregiver and provider perspectives on tuberculosis treatment adherence: a qualitative study from Lima, Peru. (Abstract, Results; DOT hours, stigma and travel in Results; limitations in Discussion (BMJ Open 2023;13(5):e069938; PMC10201266)). Where: Peru (Lima, 32 public health centers). Population: 34 adolescents aged 10 to 19 who completed or were lost to follow-up from drug-susceptible pulmonary TB treatment, their primary caregivers, and 15 nurses or nurse technicians. Published 2023-05-18; retrieved 2026-10-12.

• Iran · Reported experience · 2021

  Of 16 family members interviewed in Iran in 2020 after a relative died of COVID-19, 14 described burials by sanitation workers without relatives or friends present and without a chance to embrace the person a last time.

  What others could learn: When infection-control rules change burial, families may need to know who will handle the body, how and where burial happens, and whether they can be present. Twelve participants described distress that the burial might not follow the rites they expected.

  Conditions, limits and source

  Conditions that matter:

  Rules at the time kept relatives from deathbeds and funerals. Participants also described financial strain, job insecurity and stigma from others, and the authors link added economic pressure to sanctions on Iran.

  Cannot be inferred:

  Does not establish what burial rules were in force in Iran or how often they applied. Not representative of bereaved families in Iran. Does not state what any religion requires.

  Limits:

  Small purposive sample interviewed online early in the pandemic. The abstract reports seven categories and the Results text nine; counts are given as the authors report them. The Discussion makes statements about what a religion requires; this record does not repeat them and covers only what participants described.

  Source: BMC Family Practice (Mohammadi F, Oshvandi K, Shamsaei F, et al.); PMC full text, The mental health crises of the families of COVID-19 victims: a qualitative study. (Results, theme 'Emotional shock', category 'Strange burial'; abstract Results (BMC Fam Pract 2021;22(1):94; PMC8123094)). Where: Iran (medical centers designated for COVID-19). Population: Family members (n=16: 6 wives, 3 husbands, 5 children, 2 mothers) of people who died of COVID-19 after hospitalization. Published 2021-05-15; retrieved 2026-10-12.

• New Zealand · Reported experience · 2023

  Families and clinicians interviewed in Aotearoa New Zealand in 2021 about hospital visiting restrictions at the end of life described themes including dying alone as an enduring harm, and strategies and workarounds.

  What others could learn: End-of-life visiting policy can treat family as part of the patient's care rather than as visitors. The authors call for transparent, publicly available, evidence-based guidelines produced with patients, families and ethicists, to avert a legacy of disenfranchised grief.

  Conditions, limits and source

  Conditions that matter:

  Visiting restrictions were enacted to reduce COVID-19 transmission and protect the health care system. The abstract describes families' and clinicians' agency, strategies and workarounds but not formal exception processes.

  Cannot be inferred:

  Does not measure how often people died without family present. Does not show which visiting policies reduced harm or transmission. Not representative of all New Zealand hospitals.

  Limits:

  Abstract only; the journal site and doi.org were unreachable. The abstract names themes but not how many participants described each, nor which hospitals or regions took part. Bereaved participants described events after the fact.

  Source: BMJ Quality and Safety (Collier A, Balmer D, Gilder E, Parke R); abstract via PubMed, Patient safety and hospital visiting at the end of life during COVID-19 restrictions in Aotearoa New Zealand: a qualitative study. (Abstract, Results (BMJ Qual Saf 2023;32(12):704-711)). Where: New Zealand (hospital end-of-life care). Population: 27 participants: 13 bereaved family members, 7 non-bereaved family members, and 7 nurses or physicians. Published 2023-02-14; retrieved 2026-10-12.

• Canada · Reported experience · 2025

  Health care providers interviewed in New Brunswick, Canada, in 2022 reported that some families kept relatives at home rather than admitting them to palliative care because they worried about COVID-19 visitor restrictions.

  What others could learn: Visitor rules can change where people receive care, not only who is at the bedside. Families described more positive experiences when a patient-centered approach was used, and the authors recommend clear communication about policies and consistent exceptions for people with life-limiting diagnoses.

  Conditions, limits and source

  Conditions that matter:

  Rules differed between hospitals run by regional health authorities and independently operated hospices, which had more flexible policies. Providers described extra time on the phone with families and enforcing restrictions. Keeping relatives at home increased families' caregiving burden.

  Cannot be inferred:

  Does not measure how many families avoided admission. Does not show which visitor policy best balances infection risk and family presence. Not representative of Canada.

  Limits:

  Small self-referred sample from one province; all 12 family members identified as women. The passage reports providers' accounts, which the authors say reflected family members' findings. Interviews took place in 2022, after many of the events. No separate limitations section was found in the saved full text. Most authors are affiliated with the regional health network.

  Source: BMC Palliative Care (Hanson N, Skerry L, Nesbitt M, et al.); PMC full text, The impacts of visitor restrictions for palliative patients during the COVID-19 pandemic on family members and healthcare providers: a Canadian qualitative study. (Results, HCP theme 'COVID restrictions led to people keeping loved ones at home'; abstract Results and Conclusions (BMC Palliat Care 2025;24(1):178; PMC12217996)). Where: Canada (New Brunswick). Population: 12 family members (all identified as women) of people with a life-limiting diagnosis or who received palliative care, and 11 health care providers. Published 2025-07-01; retrieved 2026-10-12.

• Democratic Republic of the Congo · Service in operation · 2023

  During the 2018-2020 Ebola epidemic in eastern Democratic Republic of the Congo, the safe and dignified burial package included community engagement, burial at a site agreed with the family, modified funerary customs and psychosocial support.

  What others could learn: Burial under infection control can still be negotiated with the family: where, how, and which customs are modified. Community or family nonacceptance was recorded for 13% of responses on site and was associated with very high odds of failure; static community-based teams were associated with lower odds of failure.

  Conditions, limits and source

  Conditions that matter:

  Relied on trained teams, body bags, protective equipment and transport, community volunteers liaising with families and community and religious leaders, and security. Insecurity and response suspensions disrupted the service; 61% of burials were successful against an 80% target.

  Cannot be inferred:

  Does not show how families experienced the burials. Does not establish the effect on Ebola transmission. Does not transfer directly to COVID-19 or other infections.

  Limits:

  Retrospective analysis of monitoring data not collected for research, with no direct observation; teams may have overstated success. Coverage could not be quantified. Families' and communities' own perceptions were not studied. Two authors are affiliated with the IFRC and one with the DRC Red Cross, which ran the service.

  Source: BMC Medicine (Warsame A, Eamer G, Kai A, et al.); PMC full text, Performance of a safe and dignified burial intervention during an Ebola epidemic in the eastern Democratic Republic of the Congo, 2018-2019. (Background, description of the SDB service; abstract Results; Results on nonacceptance; Study limitations (BMC Med 2023;21(1):484; PMC10696665)). Where: Democratic Republic of the Congo (Ituri, North Kivu and South Kivu provinces). Population: People who died with suspected or confirmed Ebola virus disease, their families and communities; 14,624 burial requests. Published 2023-12-05; retrieved 2026-10-12.

• Vietnam · Measured outcome · 2026

  In a 2024 survey of 200 people hospitalized with pulmonary TB at a national tertiary hospital in Hue, Vietnam, the authors report that 43.5% experienced perceived stigma and 87.0% disclosed their TB selectively to close family members.

  What others could learn: Disclosure is often partial, so a care conversation can ask who already knows, who the person wants to tell, and what support they need. Interviews linked stigma to social isolation, fear of contagion, misconceptions about TB and the visibility of a tertiary hospital.

  Conditions, limits and source

  Conditions that matter:

  Health insurance covered most TB treatment costs, with gaps for medicines for people with other conditions. The authors call for stigma reduction in routine TB programs, patient-centered counseling and stronger social support.

  Cannot be inferred:

  Not representative of people treated for TB in community settings in Vietnam. Does not establish causes of stigma. Percentages depend on the instrument and how responses were grouped.

  Limits:

  One tertiary hospital, inpatients only; the authors note selection bias and interviewer bias from hospital staff collecting data. The full-text Results describe the 87% as choosing carefully whom to tell, without naming close family, and the Discussion cites an 8.5% rate of selective disclosure; the claim follows the abstract and is attributed to the authors. Cross-sectional. Instrument items are not reproduced.

  Source: PLOS Global Public Health (Luong TTV, Le HTT, Nguyen AQ, Truong BQQ, Tran TTT); PMC full text, Perceived stigma among hospitalized pulmonary tuberculosis patients in Hue Central Hospital: A 2024 mixed method study in Vietnam. (Abstract; Results on survey responses; Discussion and 'Limitations of the study' (PLOS Glob Public Health 2026;6(7):e0006752; PMC13362144)). Where: Vietnam (Hue Central Hospital). Population: 200 people hospitalized with pulmonary TB; 13 in-depth interviews with inpatients and health care workers. Published 2026-07-13; retrieved 2026-10-12.

• Zambia and South Africa · Reported experience · 2018

  Health workers in 21 government clinics in Zambia and South Africa, interviewed 2015 to 2016, linked separate HIV service areas, distinctive client flow and items such as colored client cards to people living with HIV being identified by others.

  What others could learn: Health workers said people living with HIV were harder to identify where all clients shared the waiting area, registry and pharmacy. Suggested changes included matching card colors to other chronic conditions, appointment times, adherence clubs and turning waiting benches away from the entrance.

  Conditions, limits and source

  Conditions that matter:

  In most Zambian facilities antiretroviral services were in a separate building; in South Africa they were at the clinic periphery or in a separate prefabricated structure. Participants described people avoiding the nearest clinic, giving a wrong address or arriving early or late to avoid being seen; in Zambia, some described an informal paid "VIP" service.

  Cannot be inferred:

  Does not measure how often unwanted disclosure happens or whether integrated services reduce stigma. Does not report clients' own views directly. Does not describe facilities outside the trial communities.

  Limits:

  Health workers only, usually one per worker category per facility; clients who were not health workers were not interviewed. The authors report less detailed data from South Africa than from Zambia. Fieldwork took place inside a trial that added HIV staff and structures.

  Source: Health & Place (Bond V, Nomsenge S, Mwamba M, et al., for the HPTN 071 (PopART) study team), "Being seen" at the clinic: Zambian and South African health worker reflections on the relationship between health facility spatial organisation and items and HIV stigma in 21 health facilities, the HPTN 071 (PopART) study. (Abstract (Health Place 2019;55:87-99); Methods, Findings on client flow, items and avoidance strategies, and Limitations of data in PMC6358039 full text). Where: Zambia and South Africa (21 government health facilities in HPTN 071 PopART trial communities). Population: Health workers: 49 facility workers, 35 community health workers and 30 trial community HIV care providers; 37 self-identified as living with HIV (27 in Zambia, 10 in South Africa). Published 2018-12-07; retrieved 2026-10-12.

• The sourced examples include guidance, measured outcome, reported experience, service in operation. Each quote was matched to the source text; that is not independent expert review.
• The prompts and fictional case are original. They have not been tested with patients, caregivers or clinicians.
• Whether this workflow helps anyone is an open research question.
• Content is in English. Interface translations are not reviewed for this topic.