Table 4 Study characteristics

Champagne M. and Ongeau S. (2012): Effects of respite care services in a children’s hospice: the parents’ point of view

English/Canada

To describe parents’ perspective and ability to care.

To analyze, from the parents’ point of view, the effects of respite services offered at a children’s hospice.

13 suffered from degenerative diseases, 12 had severe disabilities, and 2 had cancer

Qualitative study

Semi-structured interviews with open ended questions

Thematic analysis

25 families

25 mothers and 8 fathers, involving 27 children, average age children 9 years, ranging from 11 months to 17 years

Living at home. Receiving respite care

Respite stays allow parents to get some rest, to feel liberated from the responsibility of taking care of their sick child for a few days, to focus on their other children and their life as a couple, and to break their social isolation. For siblings, the main benefits are having their parents to themselves and sharing activities with them

Weidner NJ. Et al. (2011): End-of-life care for the dying child: what matters most to parents

English/UK

To identify and define the dimensions of pediatric end-of-life (EOL) care that are important to parents who have children or infants who died either in hospital or at home under hospice care as a result of an illness, chronic condition, or birth defect.

Malignancy; premature birth; and cardiac, neurologic, and gastrointestinal illnesses

Qualitative data derived from semi-structured interviews and one focus group interview with 18–20 participants

Content analysis

Parents (133 families) of children who died in the home [19] or in an a hospital (114)

29 parents (Sex: na.) from 20 families, the children of 8 of the families had received hospice care

Seven dimensions of pediatric EOL care were identified-respect for the family’s role, comfort, spiritual care, access to care and resources, communication, support for parental decision making, and caring/humanism

Davies R. (2005): Mothers’ stories of loss: their need to be with their dying child and their child’s body after death

English/UK

To gain an understanding of mothers’ needs based on their perspectives and to inform care and practice.

To explore the loss of a child from parents’ perspectives.

Leukemia, severe cerebral palsy, solid tumor, Maple Syrup syndrome, Hunter’s disease, Hallevorden Spatz, Niemann Pick syndrome, Cogenital dystrophy

Qualitative interviews

Hermeneutic phenomenology

10 mothers

Child died at home, hospice or at hospital

Interviews enabled comparisons to be made between care and support received in hospital, at home and in a children’s hospice. Their stories identified their need for time, space and privacy with their dying child and their child’s body after death. Also, that memories of these events continued to affect them, giving further support to new theoretical understandings of parental grief

Eaton N. (2008): ‘I don’t know how we coped before’: a study of respite care for children in the home and hospice English/Wales, UK

To describe the experiences of families, whose children have life-limiting and life-threatening conditions and who have complex healthcare needs, of receiving respite care at home or in a hospice.

Hospice respite care: epilepsy, cerebral palsy and complex special needs

Home respite care:

Similar to those in the hospice respite care

Semi-structured interviews

Constant comparison method of Strauss and Corbin (1998)

Total of 11 families receiving nursing care service in community.

Hospice respite care: six families with seven children aged between 7 and 16 years

Home respite care: five families with five children aged between 3 and 15

Two families in the latter group received care both at home and in the hospice

The areas of concern identified as significant to all the families were referral to respite service, service organisation, communication, relinquishing control to respite carers and satisfaction with service

Hsiao J.L. et al. (2007): Parent and child perspectives on physician communication in pediatric palliative care

English/USA

To identify the aspects of physician communication that children with life-limiting illnesses and their parents perceived to be facilitative or obstructive in pediatric palliative care.

Oncology 10 [50]

Cardiology 10

Semi structured interviews

Children were interviewed separately from their parents- without the parents present.

Interviews were both audio- and video taped

Grounded theory

20 parent (17 mothers, 1 father, 2 legal guardian) and child pairs of pediatric oncology and cardiology patients (mean age 14.25 years, range 9–21 years) with a poor prognosis

Both children and parents identified five domains of physician communication deemed to be highly salient and influential in quality of care; relationship building, demonstration of effort and competence, information exchange, availability, and appropriate level of child and parent involvement. Parents identified coordination of care as important communication domain

Price, J. et al. (2012): Comparing the needs of families of children dying from malignant and non-malignant disease: an in-depth qualitative study

English/UK

To examine the experiences of bereaved parents concerning the care provided to children who died from cancer compared to those who died from a non-malignant condition.

Cancer (n = 6) and a non-malignant condition (n = 10)

Qualitative in-depth interviews with bereaved parents

Thematic analysis

25 parents (16 mothers and 9 fathers) talked about the life and death of 16 children

Home, hospital or hospice

Parents of children with cancer considered care at the end of life as well resourced and responsive to their and their child’s needs. In contrast, parents of children with non-malignant conditions reported under-resourced and inadequately responsive services.

Hechler T. et al. (2008):

Parents’ perspective on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying from cancer

English/Germany

To investigate bereaved parents’ perspective on five essential areas: 1) symptoms and quality of life, 2) characteristics of the child ‘s death, 3) anticipation of their child’s death and care delivery, 4) end-of-life decisions and 5) impact of the child’s death on the parents and perceived social support by the health care team

Cancer

Leukemia, 14 brain tumor, 10 neuroblastoma, 9 non-Hodgkin lymphoma, 3 other solid tumors e.g. soft tissue tumor, bone tumor

Semi-structured interviews- on distressing symptoms and quality of life of their children during the end-of-life care period, using a German version of the questionnaire developed by Wolfe et al. (2000)

Descriptive statistics

Parents (11 fathers and 45 mothers) of 48 children (31 boys, 17 girls) who had lost their child to cancer

48% of the children died at home even though 88% of the parents chose ‘at home’ as the most appropriate locale of death in hindsight. Parents anticipated their child’s death on average 9 weeks prior to the child’s death. 41% of the parents provided palliative home care for their child and the majority (88%) rated the quality of care as good or very good. 64% discussed end-of-life decisions with the health care team, 36% did not have a discussion. Parents were clearly affected by their child’s death. However, 15% of the parents were not contacted by the health care team following the child’s death

Ling, J. et al. (2016): Parental decision-making on utilization of out-of-home respite in children’s palliative care: Findings of qualitative case study research - a proposed new model

English/Ireland

To examine the views and experiences of parents of children with life-limiting conditions on out-of-home respite care and to present a proposed new model of care based on the findings of this research

Not stated

In depths interviews

From a larger longitudinal, qualitative case study

Thematic analysis

19 in-depth interviews with nine families (9 mothers and 3 fathers)

The children’s ages ranged from 6 months to 18 years, all were under the care of a children’s palliative care team

Up to three interviews each

Each family reported vastly different needs and experiences of respite from their own unique perspective. Cross-case comparison showed that for all parents utilizing respite care, regardless of their child’s age and condition, home was the location of choice. Many interlinking factors influencing these decisions included: past experience of in-patient care, and trust and confidence in care providers. Issues were raised regarding the impact of care provision in the home on family life, siblings and the concept of home

Goldstein et al. (2013): Parents’ Views of Their Child’s End-of-Life Care: Sub analysis of Primary Care Involvement

English/US

To explore current involvement of primary care pediatricians (PCP)‘s when their patients face the end of life and bereaved parents’ attitudes toward it.

SIDS, prematurity, cardiac, neurological, oncological, GI, “other”

Individual, in-depth, semi-structured interviews were conducted using a focused ethnographic technique

Qualitative analysis

Parents of 16 children who died aged 1 month to 11 years were interviewed

Four categories of themes was highlighted: 1) the role of individual PCP in decision making and care at end of life; 2) general attitudes about the care provided by the PCP; 3) the impact of practice infrastructure on the PCP’s care; and 4) bereavement involvement

Vickers, J. L and Carlisle C. (2000): Choices and control: parental experiences in pediatric terminal home care

English/UK

Describes the experience of caring for a dying child at home from a parent’s perspective

Cancer

A qualitative research design was used to conduct and analyze data. Non standardized, focused interviews

Parent(s) of 10 families (10 children between 2 and 14 years, 11 siblings)

“Choice and control” was the major theme that linked all the other concepts, and it appeared to be fundamental to parental coping strategies. Most parents were willing to take responsibility for the nursing care of their child, including administration of intravenous medication. The patient’s home was the overwhelming choice of parents for delivery of terminal care, with most parents perceiving it as their child’s choice also

von Lutzau P. et al. (2012): Children dying from cancer: Parents’ perspectives on symptoms, quality of life, characteristics of death, and end-of-life decision

English/Germany

Investigated the experience of children who died of cancer, as perceived by their parents

Cancer

Semi-structured questionnaire via telephone or in person

Thematic content analysis Descriptive statistics

Fisher’s exact test

Parents of 48 children who had lost a child to cancer

11 interviews with both parents and 37 interviews with one parent via telephone or in person

Nearly all of the children had suffered from at least one distressing symptom. Pain and fatigue occurred most frequently. Symptoms were successfully treated over 65% of the time. In all, 64% of the children received home care services; 50% died at home, and only 10% in the ICU

Rallison L. B and Raffin- Bouchal S. (2013): Living in the in-between: families caring for a child with a progressive neurodegenerative illness

English/Canada

To explore the experience of families caring for their child at home

Progressive

Neurodegenerative Illness (PNDI)

Qualitative method Audio recorded interviews

Hermeneutic phenomenology

Six families, 27 family members. A total of 6 ill children were observed

(13 interviews, including 4 couples, 4 mothers on their own, 2 siblings, 1 ill child, and 2 caregivers who were considered family)

We discovered many metaphors that spoke to the child’s/family’s life and explored the paradox of duality, such as holding both joy and sorrow, and containing both suffering and love.

Steele, R.G. (2000): Trajectory of certain death at an unknown time: Children with neurodegenerative life-threatening illnesses English/Canada

To describes

1 families’ perceptions and experiences change over time

2 the impact on the family of living with a child who has an neurodegenerative life-threatening illness (NLTI)

3 families’ perceptions of the factors that influence their ability to care for their child with NLTI

Neurodegenerative life-threatening illness (NLTIs)

Interviews together with observations of 8 families

Each family member was interviewed individually and then as a family

Grounded theory

29 family members with total of 10 sick children Children aged between 3 and 13 years.

The siblings ranged from 2 to 9 years

Families moved through a process of navigating uncharted territory as they lived with their dying child. The illness trajectory of certain death at an unknown time was not a steady decline. Instead, families lived much of their lives on plateaus of relative stability where they often felt alone and isolated from health-care professionals. Inevitably, periods of instability originated in subsequent precipitating events in the process that led to families dropping off the plateau on the way to the child’s inevitable death.

Davies B. et al. (2004): Living in the dragon’s shadow: fathers’ experiences of a child’s life-limiting illness

English/USA

To report findings from a study that focused on fathers of children with a serious illness that they die from

Cancer [5], spinal muscular atrophy [2], and Tay Sachs [1]

In-depth, unstructured interviews

Grounded theory Unstructured interviews

8 bereaved fathers whose children (3 months-14 years) received care in a home-based hospice program

Every aspect of fathers’ lives was affected by their experiences, which were described in metaphoric terms as living in a dragon’s shadow. Fathers dealt with life in the dragon’s shadow by battling the dragon (the illness)-the core social process. Battling was a conscious, active, continuous process that required strength, willpower, and work. Battling occurred within the context of fathers’ experiences with fathering and fatherhood and was characterized by 3 aspects: battling with uncertainty, battling with responsibility, and battling with everyday disruption. Fathers were assisted by supportive work environments and by supportive relationships with health care providers. Unsatisfactory relationships with medical personnel compounded fathers’ battling with life in the dragon’s shadow

Inglin S. et al. (2011): Palliative care for children and adolescents in Switzerland: A needs analysis across three diagnostic groups English/Switzerland

To explore the perceptions and needs of families who care for a child with a life-limiting disease.

Three diagnostic groups:

(a) cancer, (b) neurological disorders, and (c) non-cancer/non-neurological conditions

Qualitative, explorative study

Content analysis

15 parents whose child had been treated in one of four children’s hospitals and received palliative care or had died within the previous 2 years were interviewed

Irrespective of the center of care, parents of children with diagnoses other than cancer reported a lack of support concerning practical issues of care and psychosocial aspects. Parents of children with cancer expressed difficulties related to coordination of care especially when care was provided at home. Bereaved parents emphasized their wish for bereavement support

Kars M. C. et al. (2015): The parents’ ability to attend to the “voice of their child” with incurable cancer during the palliative phase English/the Netherlands

To describe and offer an explanation for the parents’ actions in expressing and handling of “the voice of the child”.

Cancer

A multicenter, qualitative research study with in-depth interviews with all parents individually

Thematic analysis

44 parents of 23 children (0–18 years old)

In total 57 interviews were held, of which 37 were conducted during the palliative phase and 20 soon after the child’s

Death. 12 parents interviewed twice and one parent three times

The “voice of the child” becomes manifest in the parents’ expressions of the child’s needs and perceptions. Parents who actively searched to understand their child’s inner perspective used direct and indirect strategies. Parents preferred indirect strategies when their child avoided talking or when they considered the conversation as threatening for the child, or for themselves. Even if the parents show an intense involvement in the care and support of their child; they can still have difficulty acknowledging the child’s perspective. An inability to take into account the child’s perspective was largely due to the parents’ own struggle to cope with loss.

Verberne L.M. et al. (2017): Parental experiences with a paediatric palliative care team: A qualitative study

English/the Netherlands

To gain insight into the parents’ experiences with a multidisciplinary paediatric palliative care team (PPCT), supporting children and families throughout complex palliative care processes.

15 children had non-malignant disease and 9 children had a malignant disease

Interpretative qualitative study

Inductive thematic analysis

42 parents (24 mothers, 18 fathers) of 9 children (0- > 16). In total, 47 interviews of which 11 parents were interviewed after the child’s death

In advance, parents had limited expectations of the paediatric palliative care team. Some had difficulty accepting the need for palliative care for their child. Once parents experienced what the team achieved for their child and family, they valued the team’s involvement. Valuable elements were as follows: [1] process-related aspects such as continuity, coordination of care, and providing one reliable point of contact [2]; practical support; and [3] the team members’ sensitive and reliable attitude.

Eskola K, Bergstraesser E, Zimmermann K. Cignacco E. (2017): Maintaining family life balance while facing a child’s imminent death—A mixed methods study

English/Switzerland

To understand parents’ experiences and needs during a child’s end-of-life (EOL) care

at home and to identify systemic factors that influence its provision. To provide a comprehensive understanding

of parental experiences and needs during their child’s EOL care at home and to determine which system factors influenced provision of EOL home care in Switzerland.

Cardiac, neurological or oncological condition

Concurrent embedded mixed methods design

Quantitative data were

extracted from: [1] a retrospective chart review and [2] a parental

questionnaire survey and qualitative data from

semi-structured parental interviews

Thematic analysis

and merging qualitative and quantitative data

10 interviews (7 mothers, 1 father

and 2 couples)

Children 0–18

Parents created an intimate lifeworld and a sense of normality for the child at home. They constantly balanced the family’s lifeworld with the requirements and challenges posed by the outside world. This work exhausted parents. Parental ‘readiness’ and social support drove EOL care for children at home. Parents needed practical help with housekeeping and had negative experiences when dealing with insurance. In only 34.8% of cases was a child’s EOL home care supported by paediatric palliative care team

Castor C, Landgren K., Hansson H, Hallström I,K. (2017): A possibility for strengthening family life and health: Family members’ lived experience when a sick child receives home care in Sweden

English/Sweden

To elucidate family members’ lived experience when a sick child received home care from county-based primary

healthcare services.

Cancer, chronic lung disease, congenital hiatal hernia, heart disease and Lyme disease

A descriptive qualitative design

Interviews

A hermeneutic phenomenological approach

12 families; 4 children (6 months to 14 years), 10 siblings (3–16 years) and 23 parents

The family members’ lived experience was described in three essential themes: “Strengthening family life” relates to how home care induced freedom and luxury in a strained period of life and supported the families’ everyday life. Usual social activities and relations were maintained as time and energy was saved when receiving home care. “Promoting health” relates to how the family members’ burden of illness decreased as the child’s signs of illness alleviated and the well-being of the whole family increased when the child received care in the home. This provided a peaceful respite for family members’ psychosocial recovery. The third theme, “Creating alliances,” relates to the importance of creating trustful alliances for communicating participation in care. If trustful alliances were not created, parents felt an overwhelming responsibility and family members became anxious

Mariyana R, Allenidekania A, Nurhaeni N. (2018): Parents’ Voice in Managing the Pain of Children with Cancer during Palliative Care

English/Indonesia

To know how the experiences of mothers managing their children’s pain during palliative care following cancer diagnosis

cancer

semi-structured interviews using snowball sampling descriptive phenomenology

8 participants, comprised of 7 mothers and 1 father

Identifications of 8 themes: the dimensions of pain experienced by children undergoing palliative care; mothers’ physical and psychological responses; mothers’ emotional responses; barriers encountered by mothers when taking care of their child at home; mothers’ interventions to reduce their child’s pain; mothers’ efforts to distract their child from pain; giving encouragement when the child is in pain; and mothers’ efforts and prayers to make their child comfort.

Imperal-Perez F. Heilemann M.V. (2019): Having to Be the One: Mothers Providing Home Care to Infants With Complex Cardiac Needs

English/USA

To explore and describe the perceptions and lived experiences of mothers of infants after palliative or corrective surgery for complex CHD at birth who were discharged to home and subsequently readmitted.

complex congenital heart disease

Interviews grounded theory

10 mothers

1 category, “having to be the one,” which had 3 properties: having no choice but to provide complex care at home, handling unexpected roles, and grappling with the possibility of death.

Verberne L.M. et al. (2017): Aims and tasks in parental caregiving for children receiving

palliative care at home: a qualitative study

English/The Netherlands

To provide a generic and

comprehensive overview of parental caregiving, based on the

lived experience of parents caring for a child with a LLD.

Malignant (MD) and non-malignant diagnoses (NMD)

Single or repeated interviews

47 interviews telephone with 42 parents of 24 children (0–18)

24 mothers and 18 fathers

Parents strived to be a ‘good parent’, parents caring for a child with a life-limiting disease strived for three aims: controlled symptoms and controlled disease, a life worth living for their ill child and family balance. These aims resulted in four tasks that parents performed:

providing basic and complex care, organising good quality

care and treatment, making sound decisions while managing

risks and organising a good family life.

Verberne L.M. et al. (2019): Parental experiences and coping strategies when caring for a child

receiving paediatric palliative care: a qualitative study

English/The Netherlands

To provide insight into the most prominent experiences of parents caring for a child with a malignant or non-malignant LLD/LTD at home and to identify the main coping strategies they adopt to allow themselves to continue with their daily lives.

Malignant (MD) and non-malignant diagnoses (NMD)

Single or repeated interviews

An interpretive qualitative study using an inductive thematic analysis

Same sample as Verberne L.M. et al. 2017. See above

Prominent reported parental experiences were daily anxiety of child loss, confrontation with loss and related grief, ambiguity towards uncertainty, preservation of a meaningful relationship with their child, tension regarding end-of-life decisions and engagement with professionals. Four closely related coping strategies were identified: suppressing emotions by keeping the loss of their child at bay, seeking support, taking control to arrange optimal childcare and adapting to and accepting the ongoing change(s).