'With every fibre of their being': Perspectives of healthcare professionals caring for children with non-malignant life-limiting conditions.

BACKGROUND: Children with non-malignant life-limiting conditions (NMLLCs) constitute the largest proportion of children requiring palliative care. In part, due to technological advances, growing numbers of such children are experiencing improved survival. Care is mostly provided at home by the family, with significant professional input at different points in the child's life trajectory. This study explored the experience of healthcare professionals caring for this cohort of children. METHODS: A qualitative descriptive study design using single-occasion one-to-one semi-structured interviews collected data from 12 healthcare professionals' including nurses, social workers and doctors. Data were analysed using thematic analysis. RESULTS: The findings highlighted the unfailing determination and dedication of healthcare professionals who provided care despite challenges with what seemed like 'with every fibre of their being'. Three key themes marked such strength and commitment; those were 'being there', 'being focused' and 'being strong'. 'Being there' explicitly highlighted expert care that was individualized and responsive to the child and family's unique needs. The provision of such care was often threatened and potentially compromised by the intricacies and challenges associated with children's palliative care (CPC) and service provision. 'Being focused' captured the sense that the healthcare professionals remained entirely focused on providing expert care despite these challenges. 'Being strong' epitomized the personal and professional impact on healthcare professionals who are working in this area and the manner in which they sustain themselves in 'being focused' and in 'being there'. CONCLUSIONS: The healthcare professionals demonstrated their unwavering commitment to deliver quality care required by children and families, however against a background of issues relating to organizational constraints. The findings have implications for education/service providers such as the need for specific palliative care education at both pre-registration level and continuing professional development.

Camp Draws You Back Into Life Again: Exploring the Impact of a Therapeutic Recreation-Based Bereavement Camp for Families Who Have Lost a Child to Serious Illness.

This qualitative study explores the perceptions of impact associated with engaging in a therapeutic recreation-based bereavement camp for families whose child has died from serious illness. Interviews were completed with 12 parents who had participated in a three-camp cycle of the program over 12-month period, including a subgroup who had also attended a reunion camp. Interviews were also conducted with program staff. Thematic analysis generated key themes relating to the perceived impact which suggest that those engaged in this program perceived positive contributions associated with participation, including perceptions of positive impact on coping with bereavement, access to support and implications for family functioning. This study highlights the areas of impact associated with engagement in a therapeutic recreation-based bereavement intervention, and the potential contribution of wider access to these programs for families whose child has died from serious illness.

Risk and Protective Factors for Social Anxiety Among Sexual Minority Individuals.

Minority stress processes represent clear determinants of social anxiety among sexual minority populations. Yet sources of resilience to social anxiety are less explored as are stressors experienced from within sexual minority communities (i.e., intraminority stress). Based on minority stress theory and the psychological mediation framework, we hypothesized that experiences of discrimination and intraminority stress would predict proximal minority stress processes, including internalized homonegativity, sexual concealment behavior, and rejection sensitivity, as well as two resilience factors-sense of coherence and LGBTQ community connectedness-to explain social anxiety among sexual minority individuals. Self-identified cisgender sexual minority women (n = 245) and men (n = 256) residing in the Republic of Ireland completed an online survey. Results from a structural equation modeling analysis indicated that the data fit the hypothesized model well for both women and men. For both sexual minority women and men, experiences of discrimination and intraminority stress were indirectly associated with social anxiety via two paths (1) increased rejection sensitivity and (2) reduced sense of coherence. Intraminority stress was indirectly associated with social anxiety via increased concealment behavior for sexual minority men only. Experiences of discrimination were indirectly associated with social anxiety via a sequential pathway through increased proximal minority stress (i.e., concealment behavior and internalized homonegativity), and reduced LGBTQ community connectedness solely among sexual minority women. Findings are discussed in terms of implications for future research and clinical practice with sexual minority individuals who suffer from social anxiety.

'Starting Out in Haziness': Parental Experiences Surrounding the Diagnosis of their Child's Non-Malignant Life-Limiting Condition in Ireland.

PURPOSE: To explore parental experiences surrounding the diagnosis of their child's non-malignant life-limiting condition. DESIGN AND METHODS: A qualitative descriptive study design using single-occasion one-to-one semi-structured interviews collected data from twenty-three parents of children diagnosed with non-malignant life-limiting conditions. FINDINGS: 'Starting out in haziness' was the central concept when parents' recounted the time they learnt of their child's diagnosis. Analysis revealed three main distinct but interconnected themes within this concept helping us better understand the experiences of parents at this particular time, those being: 'Entering a whole new world', 'Acquiring a learner permit' and 'Navigating the unknown territory'. CONCLUSION: Learning of their child's diagnosis was highly distressing for parents and was marked with emotional chaos. Parents' process of realization regarding the diagnosis was related to the diagnostic process. Information and communication needs should be individualized accordingly. The findings have implications for service provision, particularly with regard to how supportive care is delivered at this time.

Staff and Parent Perspectives on a Therapeutic Recreation-Based Bereavement Camp for Families Whose Child Has Died From Serious Illness.

This study explores the nature of a therapeutic recreation-based bereavement camp for families whose child has died from serious illness. Open-ended surveys and interviews were conducted with parents attending a three-camp cycle over a 12-month period or a reunion camp. Thirteen parents completed open-ended surveys before and after each camp and six of these also completed interviews after the final camp. Six additional parents completed interviews after the reunion camp. Six staff working with families during the camps were also interviewed. Content analysis of surveys and thematic analysis of interviews revealed the aims, structure, and content of the camp. The findings suggest a model whereby shared experience allows for normalization and offers a nonjudgmental place to share stories, discuss difficulties come together as a family, and create a support network. These findings highlight the value of therapeutic recreation-based bereavement interventions for families whose child has died from serious illness.

Integration of palliative care in services for children with life-limiting neurodevelopmental disabilities and their families: a Delphi study.

BACKGROUND: The aim of this study was to explore expert professionals' opinions on service provision to children under six with life-limiting neurodevelopmental disabilities (LLNDD), including the goals of care and the integration and coordination of palliative care in general and specialist services. METHODS: A Delphi design was used with three questionnaire rounds, one open-ended and two closed response rounds. Primary data collected over a six-month period from expert professionals with five years' (or more) experience in pediatric, intellectual disability and/or palliative care settings. Ratings of agreement and prioritization were provided with agreement expressed as a median (threshold = 80%) and consensus reported as interquartile ranges. Stability was measured using non-parametric tests. RESULTS: Primary goals of care were achievement of best possible quality of life, effective communication and symptom management. Service integration and coordination were considered inadequate, and respondents agreed that areas of deficiency included palliative care. Improvement strategies included a single care plan, improved communication and key worker appointments. CONCLUSIONS: The findings suggest that services do not serve this group well with deficiencies in care compounded by a lack of information on available services and sub-optimal communication between settings. Further research is needed to develop an expert-based consensus regarding the care of children with LLNDD.

Reflections on the development of a therapeutic recreation-based bereavement camp for families whose child has died from serious illness.

While bereavement camps serve as a support for children, this study examines a therapeutic recreation-based camp for families who have lost a child. The study triangulated documents, researcher reflection, and staff interviews to highlight the themes of Searching & Finding, Getting to Know, Finding the Balance, and Joining. Developing opportunistically through internal and external factors, the camp's evolution represents a closing of the loop, from supporting families of living children to also supporting the families of children who have died. Understanding the camp's evolution may facilitate other programs by highlighting the challenges in developing the program and the lessons learned.

'Managing an unexpected life - a caregiver's career': Parents' experience of caring for their child with a non-malignant life-limiting condition.

Parents of children with non-malignant life-limiting conditions frequently accept roles that exceed the conventional activities of parenting in relation to the intensity, complexity and temporal nature of the family caregiver experience. This paper explores the prevalent and all-consuming experiences of parents caring for their children. A qualitative descriptive study design was used. Twenty-three parents (both mothers and fathers) were interviewed. Transcribed interview data were analyzed using thematic analysis. 'Managing an unexpected life' was the central concept when parents recounted ongoing efforts to address the emotional and practical effects of their child's condition on their life and that of their family. Analysis revealed three main distinct but interrelated themes within the concept of 'Managing an unexpected life' helping us enhance our understanding of parents' experiences: 'Striving for normality', 'Becoming the expert' and 'Fighting for your child'. Findings suggest that the central concept of 'Managing an unexpected life' appeared to be in keeping with a caregiver's career. Findings likewise suggest the need for improved and focused support and services to enhance parents' career caregiving.

Perceived impacts of a therapeutic recreation based hospital outreach programme (HOP) for children with chronic or severe illness: Qualitative analysis.

BACKGROUND: While Therapeutic Recreation (TR) camp programmes have been extensively analysed, less is known about hospital outreach programmes (HOPs). This study examined parent, volunteer and health care provider (HCP) perceived core features and outcomes of a hospital-based TR programme for children with serious illness. METHODS: Participants were either 1) a HCP within a hospital setting, 2) a volunteer with HOP, or 3) the parent of a child with serious illness. Semi-structured interviews were completed remotely and analysed using a reflexive thematic approach. RESULTS: Nineteen participants (5 parents, 5 HCPs, 9 volunteers) were interviewed. Core features of the HOP included the importance of playas an anchor to the present moment and as a vehicle to challenge and grow, creation of a safe space allowing child and family needs to be met, and meeting families where they are. Perceived outcomes of attending the HOP included changing the focus from being sick to being a child, and developing a sense of solidarity amongst peers for both children and parents. CONCLUSIONS: These results highlight the important contribution of the HOP in supporting children regain a sense of self that is greater than illness, allowing them to reconnect with their values and express themselves, while supporting growth and self-esteem.

Review of family-based psychosocial interventions for childhood cancer.

OBJECTIVE: To report the findings of a systematic review of family-based psychosocial interventions with pediatric oncology populations. METHODS: A number of intervention studies documenting psychosocial interventions for childhood cancer populations, that incorporated multiple family members, were examined. RESULTS: Twenty-one studies were identified that met the criteria for inclusion and provided the data necessary for synthesizing the results. Findings illustrate that multiple family members are integrated into interventions for childhood cancer in a number of ways. Considerable variation was observed regarding the family member combinations targeted and the intervention modalities employed. A minority of interventions met the criteria for empirically validated treatments; however, evidence of beneficial outcomes was observed across the majority of interventions reviewed. CONCLUSIONS: Findings suggest the feasibility, acceptability, and potential effectiveness of family-based psychosocial interventions in pediatric oncology. Recommendations for conducting future intervention studies are provided including the integration of qualitative methods in evaluations of family-based interventions.

The core features and outcomes of a specialised camp programme for children with life-limiting conditions and their families: A qualitative multi-perspective approach.

Previous research has reported that the families of children with enduring and life-limiting health conditions are at risk of negative psychosocial effects. Adjunct to medical interventions, specialist camp programmes have been developed to promote familial adjustment. However, limited research has been carried out in this area. The aim of this study was to describe the core features and outcomes of a specialised camp programme for children with life-limiting conditions (LLC) and their family. Semi-structured interviews were conducted with four professionals, three volunteers involved in facilitating the programme and two mothers representing families that attended the programme. Multiple perspectives were sought to gain a detailed understanding of the programme and outcomes. Data were analysed through an inductive thematic approach. There was considerable overlap among participant groups on the core features and outcomes of the programme. Thematically, core features are described in terms of familial togetherness, peer interaction, safety and positive experiences. Noted outcomes include lasting memories, continued peer relations for parents and siblings and enhancement of relationships between family members and professionals. Findings suggest that specialised camp programmes may provide families of children with LLC with positive experiences that support adjustment, although further research is required.

Children's voices: qualitative data from the 'Barretstown studies'.

This paper describes the experiences of children (7-16 years) affected by life-threatening illness, attending a therapeutic recreation programme. In total, 240 children completed self-report questionnaires prior to the programme, with decreased response rates at follow-up. This paper focuses on children's responses to open-ended questions. The main findings showed that children's expectations focused on the activities and social interactions they were looking forward to, while some were concerned about being away from home. Also two-thirds felt that they had acquired personal and social functioning skills. These findings are discussed in relation to the value of qualitatively accessing children's views and experiences.

Outcomes associated with participation in a therapeutic recreation camping programme for children from 15 European countries: Data from the 'Barretstown Studies'.

In recent years, specialised camping programmes, based largely on the premise of therapeutic recreation, have emerged as a form of intervention for children with chronic illnesses, and their siblings. Although these programmes are proliferating, little systematic evaluation of their outcomes has been undertaken, particularly within a European context. The aim of this research was to investigate the symptom and psychosocial outcomes of The Barretstown Gang Camp therapeutic recreation programme in Ireland, a programme aimed at European children with chronic illnesses and their siblings, in the short and longer term. Measures assessing children's physical, psychological and social functioning, specifically their self-reported physical symptoms, affect, self-esteem and quality of life, were translated into 12 European languages and administered at 3 time periods: 2 weeks before each child participated in the programme (Time 1), 2 weeks after participation (Time 2) and at 6 months following participation (Time 3). Benefits were noted in their experience of physical symptoms, affect pertaining to physiological hyperarousal and quality of life in the short and longer term. Positive changes were also noted in relation to self-esteem as it pertains to global self-worth and physical attractiveness though these were, for the most part, in the longer term only and were preceded by adverse effects in the short term. While some of these positive changes were global, there were group differences based mostly on children's age, and patient/sibling status and to a lesser extent on their nationality. However, no benefits were evident in many aspects of children's functioning, either at a global or a group level, in the short and longer term. These findings clarify previous research and suggest that camping programmes have an important role to play as a complementary intervention in facilitating adjustment to chronic illness.

Children's Perspectives of Therapeutic Recreation: Data from the 'Barretstown Studies'.

Camps offering therapeutic recreation-based programmes seek to provide a positive experience for children with life-threatening illnesses, and their siblings. While such programmes are undoubtedly motivated by the best of intentions, there are very little data available on children's own experiences in them. This article addresses this by investigating children's experiences in The Barretstown Gang Camp in Ireland. A questionnaire was completed by 449 children from 15 European countries. Feedback was factor analysed to construct an empirical model of how liking for activities in the programme clustered. Eight distinct components were identified.. Results indicated that children's level of liking for some components and whether they felt their friends would like to come to camp were influenced by their age, gender, nationality, level of understanding of explanations in camp and patient/sibling status. Children's descriptions of their camp experience emphasized themes pertaining to fun, activities, scenic surroundings, staff and multiculturalism.

The Revised-Perceived Illness Experience Scale (R-PIE): data from the Barretstown studies.

The Perceived Illness Experience Scale (PIE) was developed to measure children's perception of their illness experience. In this article, the authors examine the previously uninvestigated factor structure of the PIE using the responses of 184 European children (mean age = 11.61 years, SD = 2.31) with life-threatening illnesses. The findings showed a 6-factor solution: (1) School/Peer Rejection, (2) Thinking About Illness, (3) Physical Appearance, (4) Interference With Activity, (5) Parental Responses, and (6) Manipulation. Children's mean scores on each subscale and for the composite Revised PIE (R-PIE) were generally low, suggesting that as a group, children do not perceive that their illness has an especially negative impact on their lives. There were differences between the children's mean scores on some subscales depending on their gender nationality grouping, and type of illness. These findings provide empirical support for the R-PIE and suggest its usefulness in measuring children's experience of different illnesses in multinational settings.

Children's participation in shared decision-making: children, adolescents, parents and healthcare professionals' perspectives and experiences.

PURPOSE OF THE RESEARCH: Despite decision-making featuring throughout the trajectory of cancer care, children's participation in decision-making remains an area much under-researched and complicated by conflicting opinions. This study explored children's participation in shared decision-making (SDM) from multiple perspectives from one haematology/oncology unit in Ireland. METHODS AND SAMPLE: Qualitative research design was used to explore participants' experiences of children's decision-making. Interviews were conducted with children(1) aged 7-16 years (n = 20), their parents (n = 22) and healthcare professionals (n = 40). Data were managed with the aid of NVivo (version 8). KEY RESULTS: Parents and children's roles in decision-making were significantly influenced by the seriousness of the illness. Cancer is a life-threatening illness and so the treatment 'had to be done'. Children were not involved in major decisions (treatment decisions) as refusal was not an option. They were generally involved in minor decisions (choices about care delivery) with the purpose of gaining their cooperation, making treatment more palatable, giving back a sense of control and building trusting relationships. These choices were termed 'small' decisions that would not compromise the child's welfare. Some adolescents were aware that choices were not 'real' decisions since they were not allowed to refuse and expressed feelings of frustration. CONCLUSIONS: Healthcare professionals and parents controlled the process of SDM and the children's accounts revealed that they held a minimal role. Children appeared content that adults held responsibility for the major treatment decisions. However, they desired and valued receiving information, voicing their preferences and choosing how treatments were administered to them.

Psychosocial issues and care in pediatric oncology: medical and nursing professionals' perceptions.

BACKGROUND: Children with cancer and their families have psychosocial support needs. Medical and nursing professionals in pediatrics and pediatric oncology are in a position to identify and help manage these. However, little is known about their perceptions of psychosocial issues and interventions. OBJECTIVE: The purpose of this study was to investigate physicians' and nurses' perceptions of psychosocial issues in pediatric oncology including their awareness of the psychosocial impact of childhood cancer on families and their knowledge and views of psychosocial interventions. METHODS: A phenomenological approach was taken whereby semistructured interviews were conducted with a purposive sample of 10 physicians and nurses. RESULTS: Findings showed that despite a lack of formal training in psychosocial issues, professionals identified a number of psychosocial issues associated with childhood cancer, including effects for family members. In addition, findings illustrated the psychosocial roles that they frequently adopt in relation to the identification, treatment, and referral of psychosocial issues. Finally, physicians and nurses recognized the value of formal intervention, reporting benefits for children, families, and themselves. CONCLUSION: These findings give a preliminary insight into physicians' and nurses' perceptions and awareness of the psychosocial issues experienced by children with cancer and their families and their knowledge of psychosocial interventions. They highlight ways to enhance the delivery of care in pediatric oncology. IMPLICATIONS FOR PRACTICE: Specifically, they suggest the need for more formal training on psychosocial issues for medical and nursing professionals, for additional experienced psychosocial professionals to be recruited, and for more access to services for both families and medical and nursing professionals.