What aspects of health and wellbeing are most important to parent carers of children with disabilities?

INTRODUCTION: Parent carers of children with special educational needs or disabilities are at risk of poorer health and wellbeing outcomes because of the distinct and challenging circumstances they face. Evaluations of interventions promoting the health of parent carers should focus on measuring the aspects of health and wellbeing which are most relevant to this group. As part of a programme of research on parent carer-focused interventions, this study aimed to understand which aspects of health and wellbeing are perceived by parent carers as most meaningful and important. METHODS: A qualitative study using semistructured online interviews was conducted. A purposive sample of parent carers was interviewed about relevant health and wellbeing outcomes. Transcripts were analysed thematically. RESULTS: Thirty parent carers were interviewed, 19 of whom had experienced a health-promoting intervention, either as participants (n = 14) or facilitators (n = 5). Three main themes were identified: 'self, identity and beliefs'; 'social connections and support' and 'health-promoting practices and outcomes.' Each theme encompassed the challenges participants faced, and the changes that helped them overcome these challenges. 'Self-identity' challenges focused on the overwhelming nature of the parental care role and the emotional impact of this. Changes were brought about by developing a positive mindset, increasing confidence, and reconnecting with aspects of their identity which were important to them before they became parent carers. Challenges related to 'social connections' reflected parent carers' isolation. Change was brought about through increased peer support and peer interactions. Parent carers experienced challenges in terms of 'health-promoting activities' because they lacked free time and experienced poor physical health. Changes were brought about by engagement in health-promoting activities of various kinds. CONCLUSION: Parent carers view health and wellbeing in terms of overcoming the common challenges they face as a group. These challenges reflect the ways in which their physiological and psychological needs are often unmet. Researchers interested in measuring parent carer health and wellbeing should consider the specific challenges this group face, as well as theoretical frameworks which can make sense of these challenges, such as self-determination theory. PATIENT OR PUBLIC CONTRIBUTION: Our team carries out patient and public involvement (PPI) through a Family Faculty group facilitated by a Family Involvement Co-ordinator (A. McD.) who is herself a parent carer. A study-specific PPI working group was established which included members of the Family Faculty. The PPI group advised on various aspects of the research as reported in the paper. The manuscript was co-authored by the team's Family Involvement Co-ordinator (A. McD.).

The compassionate love for humanity scale (CLS-H-SF): psychometric properties of the Persian version.

Compassionate love is beneficial in a variety of domains, including in education, health, and law, as well as in people's personal lives. The topic of compassionate love has therefore attracted growing interest from researchers interested in its psychological and social dimensions. Given the importance of compassion to the education and health sectors, and the expansion of these sectors in Iran, this paper aims to provide Persian (Farsi) speaking practitioners and researchers with an effective instrument for measuring compassion. As such, the authors have translated the compassionate love for humanity scale-short form (CLS-H-SF) into the Persian language, and assessed the psychometric properties of this instrument among a sample of the Iranian population. A sample of 827 adults (49.9% women and 51.1% men) completed the Persian version of the CLS-H-SF through an online survey. Concurrent validity was assessed using the Persian versions of the positive and negative affect scale, self-esteem scale, and satisfaction with life scale. The CLS-H-SF positively correlated with positive affect, self-esteem and life satisfaction, and negatively correlated with negative affect. These findings indicate acceptable concurrent validity for the CLS-H-SF. Cronbach's alpha for the scale was 0.88, indicating good internal consistency between items. A confirmatory factor analysis supported a one-factor model same as the English version of the CLS-H-SF. The findings of this study showed the Persian version of CLS-H-SF had acceptable validity and reliability in assessing compassionate love for humanity in Iranian adults.