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Table 2 Data charting form, data extraction from the included articles

From: Community-based support for children who are next-of-kin for a parent experiencing illness or disability – a scoping review

  P: Children who are next-of-kin of their parents in the event of illness I: Interventions regarding support for children from community health service/preferences and expressed need for support O: Outcomes of children’s preferences/needs and interventions regarding support
Studies (n = 28) First author, year, country Aim Study design/data collection Participants Parental diagnoses Intervention/needs and preferences for support Relevant outcome
1 Bröning et al. (2019) Germany To examine a low-threshold psycho- education preventive intervention Multicentre RCT, with pre- and post-tests 2 weeks prior, 1 week and 6 months after intervention.
Questionnaires measuring: Stress, Coping, Health-related quality of life, Self-concept, Addiction-related knowledge
Intervention group: 130 children (68 males and 62 females), 6–14 yrs.
Control group (fun-and play group): 88 children (46 males and 42 females), 6–14 yrs
Substance abuse TRAMPOLINE (psycho-education preventive intervention) Children from both groups reported reduced mental distress, reduced avoidance in coping with family stress, improved self-perceived autonomy, and a better parent–child relationship.
Social isolation and addiction-related knowledge improved significantly more in the intervention group. No changes were observed in self-efficacy, physical stress symptoms, and in other health-related quality of life aspects.
2 Davey et al. (2011) USA To explore how African American youth cope with the diagnosis and treatment of parental breast cancer, and to identify culturally sensitive ways to recruit and sustain participation of this vulnerable population in intervention programmes Qualitative descriptive design.
Focus groups
12 African American youth (3 males and 9 females), aged 11–18 yrs Breast cancer Preferences for support A need for being included and appreciated by staff treating the parent was implicitly expressed.
The youth described peer-support groups close to diagnosis and during treatment important, to talk, relax, have fun and get a break from cancer.
3 Davey et al. (2013) USA To evaluate the effectiveness of a culturally adapted family intervention in improving family communication among African American parents coping with cancer and their school-age children.
A secondary objective was to determine its impact on other symptoms of psychosocial distress (depression and anxiety).
The third objective was to assess for acceptability and feasibility
Two-arm pre-intervention and post-intervention prospective design (2-year pilot).
Data were collected at baseline and at end of treatment (10 weeks).
Questionnaires measuring: Consumer satisfaction,
Parent–adolescent relationship, General communication, Anxiety Depression. Open-ended narrative responses
19 children (8 males and 11 females), 10–18 yrs. from 12 families
Intervention group: 7 African American families
Control group (psychoeducation): 5 African American families
Various cancer diagnoses Culturally adapted family intervention (CAFI) Parents and children who completed the intervention reported significantly better communication with each other compared to the control group.
Children and parents were more satisfied compared to those in the control group.
No changes were noted in symptoms of anxiety or depression.
Children especially valued the family session.
4 Dunlop & Tsantefski (2018) Australia To explore child participants’ experience of EAT, with the aim of generating a greater understanding of how psychosocial outcomes occur, or do not occur, as a result of EAT Qualitative descriptive design.
Individual interviews
33 children (15 males and 18 females), 7–13 yrs.
28 children were interviewed
Substance abuse Horse Club, an equine-assisted therapy programme The children described emotional and physical safety and security with the horses and programme environment; feeling attachment and an opportunity for joy.
Regarding personal and social development, they described finding new friends, mastering fears, increasing confidence and improving interpersonal behaviours.
5 Foster et al. (2012) Australia To provide a framework for practice for nurses working with consumer parents in order to improve outcomes for parent, reduce burden of care for families, and provide preventive and supportive care for children Theoretical paper   Mental illness Family-focused care Nurses could promote wellbeing in parent, child, and family by supporting the internal and external protective factors and reducing the risk factors
6 Gladstone et al. (2014) Canada To examine children’s behaviours in and responses to the Children’s Group to understand whether they shared the goals of the programme, and how, or if, their needs were met Qualitative descriptive design:
A critical discourse analysis of the programme manual,
observation and informal interviewing during group interactions,
Group interview with the children directly after the final session
7 children: 7–13 yrs Mental Illness A peer support group for children Children were given explicit language to explain and talk about mental illness and their experiences and to articulate their needs and feelings. They developed an understanding about individual, yet common circumstances.
7 Goodyear et al. (2009) Australia To extend the evidence base for the effectiveness of peer support programmes for children utilising outcome measures targeting self-esteem coping styles, connectedness and relationship problems, both within and outside the family unit Observational study. Pre- and post-evaluation of a pilot intervention.
Data were collected at baseline and 4 weeks after programme completion.
Questionnaires measuring: Self-esteem, Coping skills, Connections and Relationship problems
69 children,
6–13 yrs.
School holiday programme: 31 (7 males and 24 females)
After-school programme: 38 (13 males and 38 females)
34 of the 69 children attended both programmes
Mental illness CHAMPS (Children and Mentally ill Parents)
School holiday and school peer support programmes
Post intervention, there were significant improvements in self-esteem, coping and connections within the family, and reductions in relationship problems for both programmes. The school holiday programme had the additional benefit of improving problem-focused coping. The impact on children’s wellbeing differed according to the intensity of the programme (consecutive days or weekly programme).
8 Grove et al. (2015) Australia To examine the impact of the DVD on families and particularly how the intervention empowers children;
1. Children’s mental health knowledge and help-seeking behaviour pre- and post- exposure to the DVD;
2. Children’s perspectives regarding the DVD;
3. The ways in which the DVD had been employed by families and particularly children
Mixed methods design.
Pre- and post-test.
Questionnaire data were collected before watching the DVD and approximately 1 week after, focusing on:
Mental illness-related knowledge,
DVD evaluationz.
Individual telephone interviews about the use of the DVD were conducted approximately 2–4 weeks after exposure to the DVD
29 children provided pre- and post-test questionnaire data (18 males and 11 females), 8–12 yrs.
18 children were interviewed (8 males and 10 females), 8–12 yrs
Depression and/or anxiety Family-focus psycho-education DVD intervention, based on Beardslee’s family talk intervention The children’s knowledge improved, and misconceptions were challenged. They rated themselves having been provided with some coping strategies, and ways of talking to someone in their family, besides their parents, about mental health issues. They preferred to talk to someone within the family, instead of someone outside the family. Most children preferred to watch the DVD together with a parent.
9 Grové et al. (2016) Australia To present young people’s preferences for support and interventions Mixed methods design.
Study-specific questionnaire about what types of support young people want when a parent has a mental illness.
Individual interviews
172 young people (all girls), 13–17 yrs.
6 of them participated in individual interviews, as well
Mental Illness Preferences for support 94% of participants wanted support.
They wanted information, to learn more about the illness, how to cope, knowledge that the mental illness is not their fault, as well as a place to relax.
The interviews revealed that confidentiality and anonymity was an issue, as was the opportunity to talk to friends and to have support from school and healthcare professionals who are knowledgeable about the parental illness. DVD with information would be valuable on top of personal support.
10 Landry-Dattée et al. (2016) France To evaluate the way in which the group responded to the various expectations of the children and to assess the impact of participation in the group on intra-family communication about cancer and on the children’s symptoms and the distress perceived and expressed by them. A qualitative retrospective design (an evaluation of 12 yrs. of support groups for children and their parents).
Individual interviews
19 children and young people (14 males and 5 females), 5–23 yrs. Cancer A parent–child group at the cancer centre (hospital and research centre) The children expressed better understanding of the disease, reduction of symptoms such as distress and loneliness, and enjoyed meeting others in similar situations. They had reduced difficulty in speaking about cancer and increased knowledge about the hospital.
11 Martinsen et al. (2019) Norway To investigate young next of kin’s need for information and involvement, to examine the ways they cope with situations involving coercion related to the treatment of their relative, and to identify ethical challenges Qualitative descriptive design.
Individual interviews
7 young next of kin, (3 males and 4 females), 14–22 yrs.
3 were a child of a person with mental health problems and 4 were siblings
Mental health problems Preferences for support The adolescents wanted information, and interaction with their sick relative at the hospital.
12 Maybery et al. (2015) Australia To evaluate
a family recovery planning model by examine the goals set by families with parents with mental illness (MI) and those families where a parent has a dual substance and mental illness (DD)
Observational study.
Outcome variables were: the predetermined goals set by the children in the MI and DD groups after having completed three reviews of goals over a 12–18-month period
50 children from 10 mental illness families (10 males and 14 females) and from 10 dual illness families (16 males and 10 females) Mental illness (MI) or dual substance and mental illness (DD) Northern Kids Care—On Track Community Program (NKC-OTCP) Important goals for children in both groups were related to education, interpersonal skills, mental health knowledge, family connectedness, lifestyle, child development and community, and social connectedness. The most important goal for both groups were education, as well as interpersonal skills for the MI group.
During the programme period, the children in the MI group made good progress on goals related to acquiring mental health knowledge, but less progress on their other goals.
Children in the DD group made good progress on all their most prominent goals and had greater progress toward goals than children whose parent had a MI.
13 Maynard et al. (2013) Australia Identify what has been helpful for young people who have a parent diagnosed with cancer Qualitative descriptive design.
Individual telephone interviews with children whose parent had fallen ill with cancer during the last 5 yrs
15 children (6 males and 9 females), 14–18 yrs Cancer Preferences for support Meeting the doctor who provided medical care to their parent was helpful for obtaining information and for humanizing the doctor.
The children needed: time alone, time away and distraction from the cancer-affected environment and opportunities for emotional outlet.
It was helpful that people at school were informed about the parent’s illness.
Spending time with the ill parent and actively contributing to the family was considered important.
It was helpful having extended social support including peers who had been through the same experience.
14 McAndrew et al. (2012) England The study reports on the outcome of a participatory project aimed at better understanding the needs of young people caring for a parent Participatory qualitative research design.
After the event, the project team, together with the VOCAL group, established which of the issues raised were believed to be a priority to address with people attending the World Café
6 young carers who are members of VOCAL—the Forum for Young Carers in Salford, aged 13–17 yrs Not defined World Café event for young carers, the volunteer sector, health and social care practice, and education sector. The issues that were believed to be most important to address for the volunteer sector, health and social care practice, and education were:
Young carers need to be at the centre of discussions impacting on their lives. Organizations need to listen, engage, and have meaningful communication with young carers.
Schools need to be flexible in order to meet the needs of young carers.
Educators must listen to and recognize the experience of young carers.
Young carers need practical and emotional support.
They need a safe place to go where they can relax and where they will be listened to.
There is a need for funding to continue and expand services.
15 O’Neill et al. (2019) Ireland To examine how a group psychosocial intervention Children’s Lives Include Moments of Bravery (CLIMB®) helped young children to navigate parental cancer Qualitative descriptive design.
Focus groups, individual interviews and artwork (drawings and writing)
19 participants;
7 children (4 males and 3 females), 6–11 yrs.
7 parents
Cancer A psychosocial child-focused group intervention (CLIMB®) CLIMB® was evaluated as a positive experience for children through giving emotional support/navigating emotions, providing knowledge about cancer and related treatments, and by creating skills and space to talk about cancer and meet others in the same situation, which reduced feelings of isolation and alleviated anxiety
16 Philips & Prezio (2017) USA To evaluate the outcomes of a community based psychosocial intervention targeted to children
dealing with parental or primary caregiver cancer
Cross-sectional design.
Secondary analysis of survey data, a multi-year sample of survey results.
The data collection was completed within 6 months of the closure of the intervention.
The questionnaires covered 9 topics related to the child:
Sleep behaviours, eating habits, school performance, communication about illness, interacting with schoolmates, feeling secure at home, feeling anxious, relationship with ill family member and ability to separate from parent/caregiver
287 children (130 males and 157 females), 2- > 19 yrs., belonging to 156 families
The primary respondent was the ill mother to these children
Cancer Wonders & Worries (W&W) intervention The amelioration of multiple children’s issues was reported, including: improved communication skills about illness, reduced anxiety, increased feeling of security at home, improved school performance, improved sleep behaviours, improved relationship with ill family member, eating habits and ability to separate from parent/caregiver. On all variables, some children’s issues remained stable and some worsened; here, most often reported was the difficulty to separate from parent/caregiver.
17 Pihkala et al. (2012) Sweden To explore children’s experiences of the Family Intervention (FI) and what it meant for them to participate, and to explore parents’ perspectives on how the FI was for their children Qualitative descriptive design.
Qualitative interviews with children and parents the same year and the year after the family had participated in the intervention
14 children (7 males and 7 females), 6–17 yrs. and 14 parents from 9 families Mental illness Beardslee’s family intervention The intervention led to increased knowledge and more open communication about parental illness and closeness to parents. The children also experienced a sense of relief from worry about the parent. Practical support at home arranged by professionals released the children from excessive responsibility and made it possible to spend more time with friends. There was a mutual understanding between parent and child about the effect of the FI. Two children experienced minimal benefits from the FI.
18 Reupert et al. (2012) To identify issues when engaging children whose parents have a dual diagnosis in research, and present their needs and preferred support Qualitative descriptive design.
Qualitative interviews
12 children (6 males and 6 females), 8–15 yrs. Dual diagnosis of mental illness and substance abuse disorders Preferences for support The children reported that their family needed support to become closer and more connected.
The children needed someone to talk to about their feelings and support in managing their parent.
Financial support was also needed.
19 Riebschleger et al. (2009) To report early findings of a still-developing Youth Education and Support (YES) pilot intervention of multifamily group psychoeducation for youth with a parent with a psychiatric illness Observational study with pre- and post-test design.
Data were collected at the beginning of group one (pre-intervention) and at the end of the group six (post-intervention).
Questionnaire measuring:
Knowledge of psychiatric illness and recovery and
Adolescent coping orientation to problem experiences
17 children (13 males and 4 females), 10–16 yrs. Mental illness Youth Education and Support (YES) pilot intervention The children’s knowledge about psychiatric illness and rehabilitation/recovery increased.
There was no significant improvement in coping after the programme.
20 Semple & McCaugghan (2013) Ireland To explore the experience of families when a parent has cancer and the impact of a psychosocial intervention to support young children whose parent has cancer (CLIMB) Qualitative descriptive design.
Focus groups (separate for children and parents).
Individual interviews with professionals delivering the psychosocial intervention.
Data were collected 1 week after completionof the programme
7 children, (3 males and 4 females), 6–11 yrs)
Parents, n = 6
Professionals, n = 2
Cancer Children’s Lives Include Moments of Bravery (CLIMB) Children sensed that something is wrong and wanted to know about parental illness.
Children wanted to be involved; open communication rendered trust.
CLIMB normalized the experience of parental cancer. It also improved children’s understanding of cancer, reduced misconceptions and equipped them with coping strategies. Communication about difficult emotions was eased. Children appreciated the peer support within CLIMB, meeting with children in a similar situation within a relaxed and fun environment. They felt less isolated and their experience was normalized. The intervention created a safe place, where they could forget about worries. The group in CLIMB should not be too small, to allow for dropouts during the intervention while remaining a group.
21 Seng (2019) USA To describe the impact of parental migraine on adolescent children (aged 11–17) living at home with a parent with migraine Cross-sectional observational study.
Online survey to assess the impact of parental illness on children and a needs assessment on what helped to mitigate the impact of parental illness on children
40 parent–child dyads (10 male and 10 female children) with a mean age of 13.6 years Migraine Preferences for support 57.5% reported that services or interventions would be helpful. The most mentioned was having somebody to talk to about migraine (92.5%), having support from friends and family (90%), having ways to cope with anger (90%), and relying on parents for information about migraine (82.5%). The least mentioned was that it would help to talk to social services about any help provided (7.5%).
22 Suchman et al. (2011) USA To investigate whether the benefits of MTP at posttreatment were sustained at the 6-week follow-up A randomized pilot study.
The control group took part in a parent education programme
This was a 6-week follow-up study.
Data for the purpose of this review were collected by means of observations of caregiving behaviour and child behaviour
47 mothers. The intervention group comprised 23 mothers, with a mean age of 31 years, whose child was about 19 months old
The mean age of the 24 mothers in the control group was 29 years, and their child’s mean age was 17 months
Substance use The Mothers and Toddlers Program (MTP) The interaction between mother and child was moderately affected. No statistically significant effect was seen on child behaviour.
23 Templeton et al. (2011) England To present qualitative data from children and young people who had attended three new family-focused services Qualitative descriptive design.
Individual interviews evaluating the intervention
23 young people (12 males and 11 females), aged 10–17 yrs) Substance use Moving Parents and Children Together (M-PACT),
Base Camp, and
Breaking the Cycle.
The young people were nervous before attending the service, not knowing who to meet, what to do and how to react. The young people benefitted through meeting other people in a similar situation (both children and adults) and having an opportunity to talk and share experiences, learn about addiction and understand and control their emotions. The programmes made the young people feel more positive. The worker involved in the programmes was an important figure. Their families became safer, healthier and more cohesive.
24 Van Santvoort et al. (2014) The Netherlands To examine the effectiveness of Dutch support groups for children Randomized Controlled Trial.
Parents and children completed questionnaires at baseline and three and six months later
Questionnaire for children measured:
Child’s social support, cognitions, perceived competence and parent–child interaction
Questionnaire for parents measured:
Emotional and behavioural problems in the child.
Children from 254 families were randomly assigned to the intervention (n = 180) or a control group with three sessions of leisure activities (n = 74)
63.9% of the intervention group were female, vs 59.5% in the control group
Mean age in intervention group was 10.37 yrs. vs 9.97 in the control group
Mental illness Support groups for children aged 8–12 yrs Children in the intervention group experienced a greater decrease in negative cognitions and sought more social support, immediately after participation and 3 months later, as compared to control group children. They also remained stable in their feelings of social acceptance (competence aspect) immediately after the intervention, whereas these feelings declined in control group children.
The intervention and control groups both improved over time in terms of cognitions, competence, parent–child interaction and emotional and behavioural problem scores.
25 Werner & Malterud (2017) Norway To explore informal adult support experienced by children with parental alcohol problems to understand how professionals can show recognition in a similar way Qualitative descriptive design.
Qualitative retrospective interviews about childhood and adolescence experiences
9 participants (3 males and 6 females), 25–54 yrs. Alcohol abuse Preferences for support It was important to recognize the children’s needs and respond to these.
These needs included social support, by providing a safe harbour and a sense of normality, for example being with friends and their families or a neighbour and escaping difficulties at home without having to talk about their problems. The need for practical support was also reported.
Silent support not followed by an intervention or invitation to talk could lead to feeling of betrayal
26 Woolderink et al. (2015) The Netherlands To gain knowledge about the expectations, experiences, and perspectives of participants and providers of the online Kopstoring course Qualitative descriptive design.
Individual interviews evaluating the intervention.
No information given about the duration between intervention and interviews
13 children/young people (1 male and 12 females), 16- > 18 yrs.
4 providers of the intervention
Mental illness or addiction Online preventive course (Kopstoring) Participants experienced positive effects related to peer contact that led to feeling less alone, relieved, and less guilty.
Learning about the illness or addiction of the parent gave insight into their parents’ behaviour.
Learning how to cope with parents’ behaviour and problems led to acceptance and more family peace.
All themes were perceived to be important for the course to be effective, especially the ‘rate your week’ part, which was a platform for questions and peer contact.
Providers’ attitude and availability were appreciated.
Online delivery was perceived to be ideal for participation in a safe and self-selected environment and the anonymity of the participant encouraged the participants to be more open.
Barriers identified were related to: privacy in the home, technical problems, lack of time to discuss the homework assignments, too much focus on the younger participants, and complicated homework.
27 Wong et al. (2017) UK To examine perceived social support
among children of parents diagnosed with cancer, including positive and negative evaluations of various forms of social support
Qualitative descriptive design.
Individual interviews
29 participants (9 males and 20 females), 18–38 yrs., who had been children (8–17 yrs) when the parent had cancer Cancer Preferences for support The participants received and valued the following support: listening and understanding, encouragement and reassurance, tangible assistance, communication about cancer and treatment, and engaging in normal life experiences.
28 Zeighami et al. (2018) Iran To explore the mental health needs of children of parents with mental illness Qualitative descriptive design.
Individual interviews
12 children of a parent with mental illness (4 males and 8 females), 17–26 yrs.
Two healthy mothers, one daughter-in-law and four healthcare professionals
Mental illness Preferences for support The children’s needs changed in different phases of their parents’ illness
In the pre-illness phase (early onset), they needed someone who understood and to whom they could talk about their problems.
In the illness phase, they needed consolation and sympathy about the problems and the opportunity for rapid hospitalization.
In the hospitalization phase, children did not like to be alone.
In the borderline and the normal phases, children needed guidance on how to manage their newly-discharged parents and education about patient’s illness, care and legal issues.