Psychometric Testing of the Experience of Integrating Chronic Illness into Family Life Questionnaire.

Family members' experience of integrating chronic illnesses or chronic conditions into family life is valuable information for health care professionals, such as nurses, to understand, improve, and adjust the care provided to families of chronically ill patients. Furthermore, the assessment of the experience of integrating chronic illness into family life can support family nursing interventions and reduce suffering. This study aimed to adapt and psychometrically test a new Likert-type questionnaire on the experience of integrating pediatric chronic illness into family life (EICI-FLQ) in two European samples. A sample of 164 primary caregivers of children/adolescents with chronic illnesses/conditions in Iceland and another sample of 237 primary caregivers with children/adolescents with chronic illnesses/conditions in Portugal completed the online questionnaire. Exploratory factor analysis of the Icelandic sample yielded support for a one-factor solution with acceptable internal reliability (Cronbach's α = .866). Confirmatory factor analysis of the one-factor structure in the Portuguese sample indicated good model fit and similar internal reliability (Cronbach's α = .838). This instrument has good psychometric characteristics and is a promising tool for measuring the experience of integrating pediatric chronic illness into family life in clinical and research settings.

Cross-Cultural Adaptation and Psychometric Testing of the Portuguese Version of the Iceland-Family Illness Beliefs Questionnaire.

Illness beliefs have a role in the adaptation, coping, well-being, healing, and recovery in families of children/adolescents with chronic illness. The assessment of family illness beliefs can support family nursing interventions that address the suffering of family members when illness arises. The purpose of this study was to translate, cross-culturally adapt, and psychometrically test the Portuguese version of the Iceland-Family Illness Beliefs Questionnaire. A sample of 237 parents of children/adolescents who experienced chronic health conditions completed the online questionnaire. The original factor model was tested through confirmatory factorial analysis. The results showed satisfactory model fit indices (χ2/gl = 3.004; comparative fit index [CFI] = 0.90; root mean square error of approximation [RMSEA] = 0.092) and internal consistency (Cronbach's α = 0.74). The instrument showed good psychometric characteristics of validity and reliability, suggesting it may be useful in the assessment of illness beliefs in families experiencing a pediatric chronic illness.

Educational and personal burnout and burnout regarding collaborating with fellow university nursing students during COVID-19 in 2020-2021.

BACKGROUND: Knowledge is lacking about the effects of COVID-19 on nursing students' burnout symptoms. Burnout can lead to negative feelings and behaviours towards learning and poor mental health. AIMS: To describe and compare nursing/midwifery students' burnout, explore differences and detect predictors at two time points through COVID-19. METHODS: Students were offered participation in the spring semesters of 2020 and 2021 (N = 2046), during COVID-19. The response rate was 30-33%. By using reliable and valid instruments, the students' stress and burnout were analysed as well as the students' health and perceived support. RESULTS: Symptoms of academic burnout were higher among 1st and 2nd year BSc students in 2021. On the contrary, 3rd and 4th year students had higher academic and personal burnout than graduate students as well as than 1st and 2nd year students. Regarding academic burnout, 47% of the variability was explained by educational level, support, stress and the interactional effect of stress and support. Collaborational burnout, predicted by the students' educational level and support, explained 7% of the variability in the outcome. Additionally, educational level, and stress, predicted 52% of the variability in personal burnout. CONCLUSION: Educators or student counsellors need to facilitate effective learning practices and offer academic support, specifically during 3rd and 4th year to boost helpful coping strategies and handle uncertainty and stressors related to crises such as COVID-19.

Hospital and homecare nurses' experiences of involvement of patients and families in transition between hospital and municipalities: A qualitative study.

BACKGROUND: Involving patients and families in nursing care is essential to improve patients' health outcomes. Furthermore, families play an essential role in supporting patients by helping nurses understand the patient's everyday life. However, families also need support. Involvement of patients and families is especially important when patients are transferred between hospital and home as transitions heighten the risk of compromising quality and safety in care. However, no consensus exists on how to involve them. Consequently, this may challenge a systematic approach toward patient and family involvement. AIM: To describe hospital and homecare nurses' experiences with involving patients and their family members in nursing care in the transition between hospital and municipalities. METHOD: Focus group interviews were conducted in the Gastro unit at a large university hospital in Denmark. Participants included 10 hospital nurses from three wards at the Gastro unit and six homecare nurses from one of three municipalities in the hospital catchment area (total n = 16). Data were analysed using qualitative content analysis. The study is reported according to the Consolidated Criteria for Reporting Qualitative Research. FINDINGS: Our analysis revealed one overall theme - "The complexity of involvement" - based on four categories: gap between healthcare sectors increases the need for patient and family involvement, lack of time is a barrier to patient and family involvement, involvement is more than information, and involvement as a balancing act. CONCLUSION: The nurses experienced patients' and families' involvement as essential, but a discrepancy was found between nurses' intentions and their actions. Aspects related to a gap between healthcare sectors and various understandings of involvement challenged the systematic involvement of patients and families in the transition between healthcare sectors. However, the nurses were highly motivated to achieve a close cross-sectoral collaboration and to show commitment towards patients and families.

The relationship of family functioning and family health with hospital readmission in patients with heart failure: insights from an international cross-sectional study.

AIMS: The growing hospital readmission rate among patients with heart failure (HF) has imposed a substantial economic burden on healthcare systems. Therefore, it is essential to identify readmission associating factors to reduce hospital readmission. This study aimed to investigate the relationship of family functioning and family health with hospital readmission rates over 6 months in patients with HF and identify the sociodemographic and/or clinical variables associated with hospital readmission. METHODS AND RESULTS: This international multicentre cross-sectional study involved a sample of 692 patients with HF from three countries (Denmark 312, Iran 288, and Iceland 92) recruited from January 2015 to May 2020. The Family Functioning, Health, and Social Support questionnaire was used to collect the data. The number of patients' hospital readmissions during the 6-month period was retrieved from patients' hospital records. Of the total sample, 184 (26.6%) patients were readmitted during the 6-month period. Of these, 111 (16%) had one readmission, 68 (9.9%) had two readmissions, and 5 (0.7%) had three readmissions. Family functioning, family health, being unemployed, and country of residence were significant factors associated with hospital readmission for the patients. CONCLUSIONS: This study highlights the critical roles of family functioning and family health in 6-month hospital readmission among patients with HF. Moreover, the strategy of healthcare systems in the management of HF is a key determinant that influences hospital readmission. Our findings may assist the investigation of potential strategies to reduce hospital readmission in patients with HF.

Nurses' attitudes towards family importance in nursing care across Europe.

AIMS AND OBJECTIVE: To explore differences in nurses' attitudes regarding the importance of family in nursing care and factors associated with nurses' attitudes across 11 European countries. BACKGROUND: Family involvement in healthcare has received attention in many European healthcare systems. Nurses have a unique opportunity to promote family involvement in healthcare; however, their attitudes and beliefs may facilitate or impede this practice. DESIGN: A cross-sectional survey across European countries. METHOD: A broad convenience sample of 8112 nurses across 11 European countries was recruited from October 2017 to December 2019. Data were collected using the Families' Importance in Nursing Care-Nurses' Attitudes (FINC-NA) questionnaire. We used the STROBE checklist to report the results. RESULTS: There were significant differences in nurses' attitudes about families' importance in nursing care across Europe. Country was the factor with the strongest association with the total scores of the FINC-NA. Older age, higher level of education, increased years since graduation, having a strategy for the care of families in the workplace, and having experience of illness within one's own family were associated with a higher total FINC-NA score. Being male and working in a hospital or other clinical settings were associated with a lower total FINC-NA score. CONCLUSION: Nurses' attitudes regarding the importance of family in nursing care vary across 11 European countries. This study highlights multiple factors associated with nurses' attitudes. Further research is necessary to gain a deeper understanding of the reasons for nurses' different attitudes and to develop a strong theoretical framework across Europe to support family involvement in patient care. The inclusion of family healthcare programs in the baccalaureate curriculum may improve nurses' attitudes. RELEVANCE FOR CLINICAL PRACTICE: In clinical practice, the focus should be on identifying influencing factors on nurses' attitudes to enhance families' importance in nursing care across Europe.

Nursing students' perception of family importance in nursing care during the COVID-19 pandemic: A cross-sectional study.

BACKGROUND: Little is known about nursing students' illness beliefs and attitudes towards the involvement of families in nursing care during the COVID-19 epidemic. Focusing on family nursing throughout an undergraduate nursing education is not only appropriate or critical but also essential for advancing family nursing practice. OBJECTIVES: To evaluate the differences in undergraduate and graduate nursing students' perceptions of illness beliefs and their family nursing practice skills at the time of the COVID-19 pandemic. DESIGN: A cross-sectional study. SETTINGS: The Faculty of Nursing at the University of Iceland. PARTICIPANTS: Of the nursing and midwifery students, 109 participated in 2020 from one university. METHODS: Data was collected regarding illness beliefs and attitudes towards family involvement in nursing care, through questionnaires via the Red Cap software. RESULTS: The main finding indicated that the graduate students reported more confidence or reassurance regarding their knowledge of the cause of an illness, control, effect, suffering and what is the most and the least helpful in coping with an illness/health disorder when compared to the undergraduate students (t-value = -2.50, p-value = 0.014). Additionally, graduate nursing students also reported higher positive attitudes towards family importance in nursing care than undergraduate students (t-value = -2.16, p-value = 0.033). CONCLUSION: Even though the graduate students reported higher illness beliefs than undergraduate students, the undergraduate students reported a reasonably high or over medium high score, on the illness beliefs scale. University nursing educators need to be aware that nursing students' knowledge, skills and attitudes towards family nursing practice at the time of the COVID-19 pandemic shape clinical competence in family nursing within health care settings.

Effectiveness of Nursing Interventions for Patients With Cancer and their Family Members: A Systematic Review.

Cancer diagnosis poses enormous physical and psychosocial challenges for both the affected person and their families. This systematic review identifies the characteristics and effectiveness of nursing interventions offered to adult patients with cancer and their families. Five databases were searched, and 19 studies published from 2009 to 2020 were included. Interventions were categorized as follows: (a) interventions with supporting and cognitive components (n = 3), (b) interventions that included skills training for the caregiver (n = 3), (c) interventions to enhance care through managing symptoms (n = 8), (d) interventions focusing on the dyad or family-patient relationship (n = 4), and (e) interventions targeted to the patient's condition (n = 1). The results of this review offer an overview from which to carry out new studies and are useful for providing future directions within family nursing practice, taking into account the impact that the family has on the disease and the consequences the condition may bring to the whole family.

Healthcare practices and interventions in Europe towards families of older patients with cardiovascular disease: A scoping review.

BACKGROUND: In Europe, cardiovascular disease is one of the predominant causes of mortality and morbidity among older people over 65 years. The occurrence of cardiovascular disease can have a negative impact on the quality of life of older patients and their families and family health overall. Assuming that illness is a family affair shaped by culture and health care systems, we explored European health care practices and interventions toward families of older patients with cardiovascular disease and heart failure. AIMS: This paper aimed to determine the extent, range, and variety of practices and interventions in Europe directed to families of older patients and to identify knowledge gaps. MATERIALS & METHODS: A scoping review was conducted including studies published in Medline, CINHAL, or Cochrane library between 2009 and mid-2020. RESULTS: A total of 22 articles from 17 studies were included, showing diverse practices and interventions. The interventions targeted the family as a unit (six studies), dyads (five studies), patients alone, but assessed family members' reactions (five studies) or the family member primarily, but assessed the reaction of the patient (one study). Target outcomes were family caregiver burden; health-related QoL; and perceived control in patients; and family functioning and changes in health behavior or knowledge in both, family members and patients. Most studies did not include an integral view of the family as the unit of care but rather had a disease-centered approach. DISCUSSION: This scoping review provides insight into a variety of healthcare practices towards families of older patients with cardiovascular disease in Europe. Clarifying underlying assumptions to involve families is needed. More studies with family-focused approaches as integral models could lead to practices that improve families' well-being. Exploring integral models for their acceptance in health care and family systems appears pertinent to develop European policy to support and add to family health.

Predictors of university nursing students burnout at the time of the COVID-19 pandemic: A cross-sectional study.

BACKGROUND: Little is known about the stress and burnout experienced by undergraduate and graduate nursing students during the COVID-19 pandemic. Academic burnout among nursing students can have an impact on students' learning ability, health, and wellbeing and on the quality of care and intention to leave the profession post-graduation. OBJECTIVES: Evaluate the predictors of nursing students' personal, academic, and collaboration-related burnout during the COVID-19 pandemic. DESIGN: Cross-sectional two-site study. SETTINGS: Icelandic universities offering nursing education. PARTICIPANTS: Graduate and undergraduate nursing students in Iceland (N = 1044) were asked to participate in the study, with a response rate of 32.7%. METHODS: An online survey was used to evaluate the students' stress and burnout in spring 2020. RESULTS: The main findings show that 51% of the variability in the students' personal burnout was explained by their perceived stress, mental health, and perceived support. Furthermore, the students' perceived stress, support, and educational levels predicted 42% of the variability in their academic burnout. Burnout related to collaborating with fellow-students was explained by the nursing students' physical health and by their educational level, explaining 6% of the variability in fellow-students burnout. CONCLUSION: University administrators might consider adding academic support facilities into their undergraduate nursing programs and teaching their students healthy coping skills.

Effectiveness of a couple-based intervention on sexuality and intimacy among women in active cancer treatment: A quasi-experimental study.

PURPOSE: To evaluate the effectiveness of a strenghts-oriented therapeutic conversation intervention on confidence about how illness beliefs affect sexuality and intimacy and on perceived relationship quality among women in active cancer treatment and their partners. METHODS: A quasi-experimental single-group pre-post-follow-up design was used. Women in active cancer treatment and their intimate partners were randomly assigned to a nurse-managed couple-based intervention (experimental group, n = 30 couples) or wait-list (delayed intervention) control group (n = 27 couples) plus 4 additional couples who pilot tested feasibility of the intervention, prior to the RCT. However, baseline differences in demographic and clinical variables prevented comparisons between groups. Therefore, a repeated-one-group pre-post test setup was used, comparing women with cancer and their partners over three time points. The intervention consisted of three Couple-Strengths-Oriented Therapeutic Conversations (CO-SOTC) sessions. The participants also had access to web-based evidence-based educational information. Data were collected before intervention (T1, baseline), one to two weeks post-intervention (T2), and after a follow-up session at three months (T3). Data from 60 couples (N = 120) were analyzed. RESULTS: Significant differences were observed, for both women and intimate partners, over time in more confidence about how illness beliefs affected sexuality and intimacy (T1 versus T2, and T1 versus T3), and increased overall quality of the relationship (T1 versus T2, and T1 versus T3). No differences were found between dyad members' scores on illness beliefs or relationship quality at any time point. CONCLUSIONS: The CO-SOTC intervention was effective in supporting sexual adjustment among women in cancer treatment and their intimate partners. TRIAL REGISTRATION NUMBER: NCT03936400 at clinicaltrials.gov.

The Benefit of a Couple-Based Intervention Among Women in Active Cancer Treatment on Sexual Concerns: A Quasi-Experimental Study.

BACKGROUND: Sexuality-related problems are common in women with cancer, threatening their sexual well-being and intimate relationships. Evidence-based interventions addressing the full range of sexual concerns among women in active cancer treatment are scarce. OBJECTIVE: The aim of this study was to evaluate the benefits of a novel couple-based intervention focusing on sexual concerns among women undergoing cancer treatment, including a subgroup of women with breast cancer. A secondary aim was to assess changes in illness intrusiveness in daily life. METHODS: A quasi-experimental single-group pre-post follow-up design was used. The study was initially planned as a randomized controlled trial with waitlist control group receiving delayed intervention. However, substantial differences were observed in clinical and demographic variables between the treatment group and control group, resulting in using a single-group pre-post follow-up design. The intervention consists of 3 advanced nurse-led, face-to-face couple-based sessions supported by access to web-based information. RESULTS: Women in active cancer treatment participated in the study (n = 60) together with their partners (n = 60). The main results showed significant differences between time points in the outcome measures for concerns related to the sexual adverse effects of cancer treatment (T1 vs T2, and T2 vs T3), sexual concerns related to the women's partners (T1 vs T2), and for concerns related to communication with healthcare providers about sexuality-related issues (T1 vs T2). No significant changes were found over time with respect to illness interference on the intimacy or instrumental subscales. CONCLUSIONS: The results demonstrated that the approach of 3 couple-based therapeutic conversations is beneficial in reducing sexual concerns among women in active cancer treatment. IMPLICATIONS FOR PRACTICE: Advanced nurse practitioners can develop and offer brief psychoeducational support that is helpful in reducing sexual concerns among women in active cancer treatment.

Long-Term Effect of Receiving a Family Strengths-Oriented Intervention on Family Cancer Caregiver Stress, Anxiety, and Depression Symptoms: A Longitudinal Quasi-Experimental Study.

The aim of this longitudinal study was to evaluate the long-term effects of providing a therapeutic conversation intervention, based on Family Systems Nursing, to family caregivers of a close relative with advanced cancer over the period before and during bereavement. To prevent adverse outcomes, caregivers need ongoing support that begins pre-loss and extends into the post-loss period. This study employed a one-group pre-test, post-test quasi-experimental design. Twenty-four caregivers participated in two intervention trials conducted over a 42-month period, receiving two intervention sessions pre-loss (Trial 1) and one intervention session post-loss (Trial 2). Significant decreases in anxiety and stress were noted over the three post-loss assessments. The final post-loss stress outcome was significantly lower than the first pre-loss score. For the depression score, there was not a significant change over time within the pre- or post-loss period. The findings provide evidence of decreasing anxiety and stress following the implementation of an extended family nursing intervention for bereaved family caregivers.

A challenging journey: The experience of elderly patients and their close family members after major emergency abdominal surgery.

RATIONALE: Knowledge of how elderly patients undergoing major emergency abdominal surgery and their close family members experience the course of illness is limited. Little is known about how such surgery and hospitalisation affect elderly patients' daily life after discharge. It is well known that such patients have an increased risk of mortality and that their physical functional level often decreases during hospitalisation, which can make them dependent on family or homecare services. Critical illness and caregiving for a close relative can be a stressful experience for families, which are at risk of developing stress-related symptoms. AIM: To explore how elderly patients and their families experience the course of illness during hospitalisation and the first month at home after discharge. METHOD: A phenomenological study was conducted to gain in-depth descriptions through 15 family interviews with 15 patients who had undergone major emergency abdominal surgery and 20 of their close adult family members. Data were analysed using a phenomenological approach inspired by Giorgi. FINDINGS: The essence of the phenomenon is captured in three themes: (1) Being emotionally overwhelmed, (2) Wanting to be cared for and (3) Finding a way back to life. CONCLUSION: Patients and their close family members experienced the course of illness as a challenging journey where they longed for life to become as it was before illness. They experienced illness as a sudden life-threatening incidence. In this situation, it was crucial to be met with empathy from healthcare professionals. The patients' experience of fatigue and powerlessness remained intense one month after discharge and affected their and their close family members' lives.

The better sleep better well-being programme: Educating and training community healthcare nurses in developing interventions for families of infants with moderate sleep problems: a pilot study.

The main aim of this pilot study was to evaluate the benefit of the Better Sleep Better Well-being (BSBW) educational and training intervention programme regarding infants sleep problems for Community Health Care (CHC) nurses, on their perceptions on their family nursing practice skills and on their job demand, control and support. There were 6 CHC nurses who participated in the BSBW programme, and 26 nurses in the comparison group. The programme consisted of 4 sessions (8 hours per session) of lectures on the aetiology of infants sleep problems as well as on evidence-based and family relational practices and on 20 sessions of clinical cases, scenarios, discussions and reflections. The main finding indicated that the nurses in the intervention group reported significantly higher family nursing practices skills compared to the nurses in the comparison group. The findings are promising, since they offered additional resources to the CHC nurses, in their clinical practices.

The Impact of Receiving a Family-Oriented Therapeutic Conversation Intervention Before and During Bereavement Among Family Cancer Caregivers: A Nonrandomized Trial.

Effective communication is the foundation of quality care in palliative nursing. As frontline palliative home care providers, nurses could foster more effective bereavement coping skills through therapeutic conversations. The purpose of this study was to evaluate the impact of a nursing intervention offered to bereaved family cancer caregivers. This was a quasi-experimental design, with a posttest-only comparison of the intervention and control groups receiving usual care. Bereaved caregivers (n = 51) receiving services from a specialized palliative home care unit participated and completed measures of depression, anxiety, stress, and grief reactions 3, 5, and 6 months after their close relative had died.There was a significant decrease in anxiety symptoms in the intervention group compared with the control group across all 3 time points. Anxiety and stress symptoms also decreased over time in the 2 groups combined, but this decrease was not observed for depression. When evaluating grief reactions, the intervention group had a lower mean of controlled grief responses, across the posttest period, than the control group.Results demonstrate that providing bereaved family caregivers the opportunity to participate in a therapeutic conversation intervention might reduce distressing symptoms in early bereavement.

The Impact of Family Strengths Oriented Therapeutic Conversations on Parents of Children with a New Chronic Illness Diagnosis.

A growing number of families with children are dealing with a new diagnosis of chronic illnesses or health problems that are demanding. Nurses are in a prime position to provide support and empowerment to these families. The aim of the study was to evaluate the benefits of two sessions of a Family Strengths Oriented Therapeutic Conversation (FAM-SOTC) intervention, offered by advanced practice nurses (APNs) to mothers (N = 31) of children and adolescents in Iceland with newly diagnosed chronic illnesses/disorders. Families of children with Juvenile Idiopathic Arthritis (JIA), epilepsy, Type 1 diabetes (T1DM), or with sleep disturbance with attention-deficit/hyperactivity disorder (ADHD), reported significantly higher family support, greater conviction about their illness beliefs, increased quality of life, and greater satisfaction with health care services after receiving two sessions of the FAM-SOTC intervention (Time 2) compared to before the intervention (Time 1). The findings emphasize the importance of the APN's role and family nursing expertise in supporting families of children with a new diagnosis of chronic illnesses or disorders who are in active treatment.

The effectivness of a strengths-oriented therapeutic conversation intervention on perceived support, well-being and burden among family caregivers in palliative home-care.

AIMS: To evaluate the effectiveness of a two-session multicomponent family strengths- oriented therapeutic conversation intervention among family caregivers of an individual with advanced/final stage cancer during ongoing palliative home-care. BACKGROUND: Family caregivers of patients in the advanced/final phases of cancer, experience multifaceted psychological distress and morbidity. Psychosocial interventions improve the well-being of family members who are caring for their close relative. DESIGN: A pre-experimental design with a one-group pre-test/posttests measurements. METHODS: Forty-eight family caregivers were assigned to receive two 60-90 min sessions of the intervention. The primary outcome was perceived emotional and cognitive support and psychological well-being, measured at baseline (T1). Then the participants were offered the first session of the intervention. About 1 week later, the second session was administered. The participants answered the same questionnaires again (T2) and then 2-4 weeks later (T3). The guideline; Criteria for Reporting Development and Evaluation of Complex Interventions 2, guided the reporting of the study. RESULTS: Family caregivers reported significantly higher emotional and cognitive support post-intervention (T2) and at (T3). They also reported significantly reduced stress symptoms at (T3) and reduced caregiver burden post-intervention (T2) and at (T3). CONCLUSION: The provision of the intervention contributed to extending knowledge about the usefulness of family conversations in the context of advanced/final stage cancer care. IMPACT: There is a lack of knowledge about the benefit of therapeutic conversation interventions for family caregivers. The therapeutic conversation intervention offered, resulted in perceived support, decreased stress, and decreased caregiving demands among caregivers in palliative home-care. TRIAL REGISTRATION NUMBER: ISRCTN 21786830.

Predictors of quality of life for families of children and adolescents with severe physical illnesses who are receiving hospital-based care.

AIM: There is strong evidence regarding the impact of medical treatments on hospitalised children and their families after being diagnosed with a serious illness. Even though survival rates have increased for children and adolescents with illnesses such as cancer, kidney, liver and gastrointestinal diseases, lengthy medical procedures and symptom management may have an impact on the well-being and quality of life for families. Little is known, however, about promoting family quality of life in hospital-based paediatric settings. The main purpose of this study was to evaluate the predictors of quality of life (QOL) across physical health conditions among families of children and adolescents with cancer, kidney, liver and gastrointestinal diseases. Further, to evaluate the difference in perception on QOL among families of children with cancer compared to families of children with kidney, liver and gastrointestinal diseases. METHOD: The study design was cross-sectional. Thirty-eight families of children with cancer, kidney, liver or gastrointestinal diseases participated at a University Hospital. Data were collected using valid and reliable instruments to measure the study variables from March 2015 to May 2016. FINDINGS: The main result from the stepwise regression analysis indicated perceived family support and illness beliefs, significantly predicted quality of life of the family; approximately 41% of the variance in the families' perception of their quality of life was explained by the model. CONCLUSIONS: The findings emphasise the importance of supporting and maintaining quality of life for families of children with physical illnesses. RELEVANCE TO CLINICAL PRACTICE: Family level interventions within the healthcare system are needed for families of children with severe physical illnesses, since that can result in better outcomes for the child or adolescent and their family. Such an intervention would need to emphasise therapeutic conversations within a relational context, highlighting illness management, illness beliefs, and cognitive and emotional family support.