Table 5 Summary table of included qualitative studies

Hinds Pet al. 200 [35]

To describe the way in which decision are made & factors considered in the decision-making process

Private semi-structured interviews within 24 hours to three weeks of participating in end-of-life decisions.

One parent per family (n = 11) of children whose disease had progressed to the terminal stage.

3 Hospitals: USA, Australia, Hong Kong.

The parental factors identified at all three sites:

Interview schedule piloted.

“The likely adverse effects of treatment.

Trained interviewers.

A convenience sample technique.

“Nothing more to do”.

“Believing that my child could not survive”

Data saturation not reported.

The children of these parents ranged in age from 1.8 to 19.11 years).

Treatment decisions:

Site-specific factors: the child’s preference, only at the US site (n = 4).

Content analysis technique.

─ Do not resuscitate status or terminal care (n = 11)

All parents assisted in making a treatment-related decision.

Most parents were women.

All five Hong Kong parents “felt forced” to participate in the decision-making process.

Hinds P et al. 2005 [36]

To identify the end-of-life care preferences and the factors that influenced their decisions.

Private and separately, face-to-face semi-structured interviews within 7 days of their participation in end-of-life decisions.

Children (n = 20) aged 10 to 20 years; mean, 17.4 years.

2 Hospitals: USA, Australia.

Children factors:

Interview schedule piloted.

Caring about others

Avoiding adverse effects.

Trained interviewers.

Parental factors:

A convenience sample technique.

Parents (n = 19)

The child preferences.

Trying for cure

Data saturation not reported.

Semantic content analysis.

Oncologist (n = 14), Most parents and children were women.

Oncologist factors: Patient’s prognosis and comorbid conditions.

Treatment decisions:

All participants were directly involved in the end-of-life decision.

Patient and family preferences.

─DNR status (n = 5),

─Terminal care (n = 7),

─Phase I RCT (n = 8).

Hinds P et al. 2009 [37]

To identify parental definitions of being a good parent. And the actions from clinicians that would be helpful to them in fulfilling this role.

Private and separately, face-to-face, semi-structured interviews within 72 hours of participating in no curative treatment decisions.

Parents (n = 62) of children (n = 58) whose disease had progressed to the terminal stage.

1 Hospital: USA

Good parent means: (i) Doing right by my child. (ii) Making decisions in the child’s best interest. (ii) Meeting the child’s basic needs.

Interview schedule piloted.

Trained interviewers.

Convenience sampling technique.

The children of these parents ranged in age from 0.6 to 21.6 years; median, 11.4 years).

Actions from clinicians:

Data saturation not reported.

To know that the child was receiving the best clinical care.

Treatment decisions:

Semantic content analysis.

─Do not resuscitate status or terminal care (48.3%),

Every theme was reflected in all three decision types.

Most parents were women.

Parents participated in the decision-making.

─Phase I Research Controlled Trial (51.7%),

Tomlinson D et al. 2006 [38]

To identify the factors influencing decision making about treatment options for end-of-life.

One focus group.

Parents (n = 7) of children (n = 5) who had died of cancer (from 0.6 to 14 years after death).

1 Hospital: Canada

Parental factors for chemotherapy:

Interview schedule piloted.

Trained interviewers.

Hope, time, relieve pain, child’s decision.

A convenience sampling technique.

Hypothetical situation was presented to parents.

For supportive care:

Data saturation not reported.

Age of children at death no declared.

Time, lessening suffering, nothing more to do, child preferences.

Content analysis.

Factors options:

Most parents were women.

Treatment offered:

Parents were the decision-makers.

Child’s quality-of-life, Survival time, Probability of cure.

─Palliative cytotoxic chemotherapy;

─Supportive care alone.

Percentages per group no declared.

Hannan J et al. 2005 [39]

To identify the factors influencing decision making about final place of care (home or hospital).

Private and separately open-ended interviews. Parents were the only decision-makers.

Parents of children (n = 5) who had died of cancer (from 1 to 2 years after death).

1Hospital: England

Valuing time left,

Interview schedule piloted.

Needing to feel safe and secure, and

Trained interviewer.

We did not know what to expect.

A purposive sampling technique.

No difference between home and hospital, other than the desire to have control themselves as a family.

Data saturation not reported.

Gender distribution was not reported.

Interpretative phenomenological analysis.

The children of these parents ranged in age from 10 to 19 years).

Place of care decisions:

Home (n = 3)

Hospital (n = 2)

Bluebond LM et al. 2007 [40]

Parents’ approaches to care and treatment.

Ethnographic study including

Parents of 34 children whose disease had progressed to the terminal stage.

2 Hospitals:

23 accepted CDT or look on their own or asked their doctor to do so.

Interview schedule piloted —unclear.

USA

Trained interviewer.

4 out of 23 cases to whom was offered CDT declined CDT.

Convenience sampling technique.

UK

Participant observation, Open-ended, semi structured interviews. Parents were the only decision-makers.

2 out of 11 cases to whom was offered only TC agreed.

Data saturation not reported.

The children ranged in age from 0.9 to 19.7 years; median 6.0 years).

Constant comparison analysis technique.

Treatment offered:

Gender distribution was not declared.

Cancer-directed treatment (n = 23), Terminal care (n = 11),

Steward JL et al. 2012 [41]

To describe and explicate the treatment decision-making process from the perspectives of parents.

Private and separately semi structured interviews, within six months of participating in major treatment decision-making.

Parents (n = 15) of children (n = 13) whose disease had progressed to the terminal stage.

3 Hospitals: USA

Parental motivations for making the right decision:

Interview schedule piloted.

(i) Doing right by my child. (ii) Making decisions in the child’s best interest. (ii) Meeting the child’s basic needs.

Trained interviewers.

The children of these parents ranged in age from 3 to 17 years; median, 10 years.

Most parents were women.

Convenience sampling technique.

Parents participated in the decision-making.

Data saturation not reported.

Treatment decisions:

─ Hematopoietic cell transplantation (n = 5),

Constant comparative analytic process.

─ Research Controlled Trial (n = 8).