The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review

Abstract

Background: Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing approaches comprehensively address parent caregivers’ needs. Aim: To examine support needs of parents caring for children with life limiting illnesses and identify specific approaches used to identify and address needs. Design: A scoping review Data sources: MEDLINE, EMBASE, PsycINFO, CINAHL and ProQuest Central, were searched for peer reviewed English language full text research published from 2008 to 2019. Study quality appraisal was undertaken. Fourteen quantitative, 18 qualitative and 12 mixed methods studies were synthesised and themed using summative content analysis and mapped to the Parent Supportive Care Needs Framework (PSCNF). Results: Themes were communication, choice, information, practical, social, psychological, emotional and physical. Communication and choice were central and additional to domains of the PSCNF. Unmet were needs for supporting siblings, for respite care, out of hours, psychological, home and educational support. Six articles reported using instruments to identify parent carer support needs. Conclusion: Support needs of parent caregivers of children with life limiting illnesses are substantial and heterogenous. While studies report evidence of burden and distress in parent caregivers, this rarely translates into improvements in practice through the development of interventions. A systematic and regular assessment of individual parent caregiver support needs is required by using instruments appropriate to use in clinical practice to move the focus to palliative care interventions and improved services for parents.

The effect of physical and psychosocial symptoms on caregiver burden of parents of children with cancer

“…There are many factors affecting the burden of care of parents (Boztepe et al, 2019). Characteristics of the caregiver (age, sex, educational status, income and working status), characteristics of the child (age and sex), characteristics of the child's disease (diagnosis and duration of treatment), formal care systems, social support status and the needs of the caregiver parent and the child are among the factors affecting the caregiver burden (Boztepe et al, 2019;Gill et al, 2021;Wang et al, 2017). In the literature, it is stated that single parents and parents with low education level, a physical disease, economic problems and low psychosocial status have higher caregiver burden (Edmond et al, 2016;Sulkers et al, 2015).…”

“…Caregiver burden is an important concept in the management of chronic and life-threatening diseases, and it is important that parents are regularly evaluated during the caregiving process, their needs are identified and they are supported and empowered in line with these needs (Gill et al, 2021). When the needs of parents are not evaluated and met during the long-term caregiving process (lack of respite care, lack of psychological support, lack of social support and lack of information support), physical symptoms such as loss of appetite, weight loss, chronic pain, fatigue and disruption in sleep patterns and psychosocial symptoms such as depression, anxiety, stress, feeling of guilt, helplessness, anger, fear, restlessness, burnout, decreased self-esteem, social isolation and decreased quality of life develop in parents, which all increase the burden of care (Gill et al, 2021;Johansen et al, 2018;Rost et al, 2018;Wiener et al, 2017). In the literature, it is seen that the factors affecting the caregiver burden in adult oncology caregivers are examined in multiple dimensions (Johansen et al, 2018;Muliira et al, 2019), while the limited factors affecting the care burden of parents in paediatric oncology group are evaluated (Boztepe et al, 2019;Wang et al, 2017).…”

Organizational and individual barriers and facilitators to the integration of pediatric palliative care for children: A grounded theory study

“…The importance of both dedication and availability as facilitators for palliative care is supported by other research on this topic looking at the parents' perspective, marking them as valued interpersonal behaviors. 26,39 Backer et al 40 stated that clinicians' dedication can be effectively translated into clinical practice, allowing to better address specific palliative and end-of-life care needs. Our results suggest that these exist in the context of the Israeli healthcare system as well.…”

“…25 In Australia and Holland, unmet palliative care needs of parents for off hour support, respite, and home support were also reported. 26 In Israel, palliative care was recognized as a medical specialty in 2013 and a nursing specialty in 2009 and mostly focused on the treatment of adults. 27,28 The vast majority of pediatric palliative care is provided in hospitals by primary oncology teams.…”

“…25 In Australia and Holland, unmet palliative care needs of parents for off hour support, respite, and home support were also reported. 26…”